Hello all. I have been dealing with several symptoms for about a year now. I have posted here a few times and also on the Thyroid Board.

For the past year, some of my symptoms have been, ALWAYS tired and fatigued with NO energy to do anything. I am tired when I am sitting, which is pretty much all I do now a days because I have no energy to get up and do anything. I have lost weight ... lost about 30 pounds since the beginning of the year, am down to 125 pounds now and I have NEVER tried to lose weight. I keep trying to eat things now to gain weight, but I am not gaining any. I have sporadic bouts of high blood pressure which the doctors have done several tests for, but they came back normal. My arms and legs fall asleep VERY easily. If they are in a certain position for a few minutes, they will fall asleep. My hair is BIG TIME THINNING!!!!!! I am always cold or sweaty hot. I get brain fogginess, I feel like I forget things and cannot remember things like I used to. Like I will know I have to get something when I go into a room, I will go to the room, and forget what I am there to get, it is driving me crazy!!! I never used to be like that. There are times I get so tired from just walking up the stairs, sometimes my heart will beat really fast after I walk up the stairs too. It doesn't happen all of the time ... and I never know when it will happen, it just happens. Like I get to the top of the stairs and I am out of breath and my heart is eating really fast. My eyes have been doing this weird twitching back and forth thing ..... they both do it at the same time and they move back and forth really, eally fast. It will do it for like maybe 2 seconds, then it will stop. I am like ... what the heck is wrong with me!!

Have been back and forth to the family doctor, tested my thyroid, all came back normal. Did a full blood panel, all came back normal. Did cortisol tests, they came back high ... doctor says that because I have back problems, and am always in pain from my back, that could be why my cortisol levels are high. Have some hormone testing done .... FSH came back a little high, LH came back normal, Testosterone came back on the low side of normal, was 28. I had my Ferritin level checked the other month ... someone mentioned to me to have that done on the board here. I believe my level came back at like 20, 21 or 22. I don't have those results in front of me at the moment, but it was one of those numbers. People mentioned to me that my Ferritin level could be why my hair is thinning. I went back to the docs, told her what people were telling me. She said she doesn't go by Ferritin levels. She goes by what the Blood Panel results are when it comes to Anemia.

She then sent me to an Endocrinoligist. I went there last Friday. This doctor was not of any help either. She doesn't know why I am having all of these symptoms. She said I have several groups of symptoms, but when she thinks my symptoms could be one thing .... the other group of symptoms rule out what she was thinking. So she told me she was at "Aw" and doesn't know why I am having the symptoms I am having. I was like ok .... I left there and was MAD!! I was thinking, you are the specialist .... you know my symptoms, yet you can't help me?? Ohhh the one thing she did say was ... I could be lacking in B12, that could be why my hair is thinning. She even looked at my hair and used her hands through it to look at spots, and she was even saying .... "yes, you do have a lot of thinning spots through out your head". I was thinking ... UM YEAH! It's been big time falling out for months now. Soon, I am not going to have any hair and I am only 34 years old!

Anyway .... I go home and of course was mad. I figured I would try to order the B12 test myself. So, found an online lab, ordered the B12 test, went yesterday, had the blood drawn, and got my test results back today. Well, my B12 is low. I am just not sure if it is low enough to cause any of my symptoms. My level cam back at: 172. The normal lab ranges for B12 on the lab report is: (211-911).

I faxed them over to my family doctor and to the endocrinologist. I am not sure if they will do anything or not. Does anyone here have any information on B12 or any experience in B12? Is my level just a little below normal? Could my level be causing my symptoms? If you have any information or advice for me PLEASE let me know. I would GREATLY appreicate any advice. Thank you!!

Tifferz

Tifferzz- Sorry to hear about your trouble with the docs. I have had my share of that too. My endocrinologist wanted me to supplement with 325mg iron daily when my ferritin was 38 , so for sure I think your doc should get you started on iron supplements and then monitor your levels till you get in a good range. What the good range is seems to be subject to interpretation but I think 70 from my reading seems to be a threshold for real improvement. From what I have read alot of aches, pains and hair loss may be associated with low ferritin.
Also if you haven't had your vit d level checked it is a hugely important thing to do. My vit d was way low a 19, that was terrible. Vit d deficiency can also cause alot of aches and pains . You may want to check out the vitamin d council on the net. The phds and mds that are on the vitd council are world class scientists and affiliated with major universities. They think that proper vit d levels are critical for health and that deficiency can lead to greater chance of various cancers, autoimmune disorders , ms etc. etc. When my vit d and ferritin level increased I felt so much better. Much less of the aches and pains . Also I had leg pains at night for several years and they have just stopped. I am shocked. Because I moved the vit d and iron up at the same time, I won't ever really know which helped or whether it was the combination. In any event be sure to get your vit d level checked and do something about your ferritin.
I am hypothyroid due to hashimoto's autoimmune disorder and also have osteoporosis. I have to get these deficiencies dealt with to try to achieve a level of well being and health. I have burned through docs in this quest to get help. I am now finally feeling that it is coming together. So I know your frustration.
I think your gp is , according to what I have read, incorrect on not going by ferritin and instead just looking at blood panel for anemia. From what I have read anemia is the end point. Low ferritin will show you are moving in that direction. Which you are by the 20 ferritin number. So why wait till anemia. Others on this board will agree with this for sure. It is so hard and time consuming to get the ferritin up. To me, it seems your doc is not helping you but giving you frustration. Could you change docs??
On the B12 , I have supplemented for about a year. I take b12 in a multivit and also now take a sublingual(dissolves under your tongue) b complex tab with b12. All this contributed to a very decent b12 number on my labs, so maybe with supplementing you could bring yours up. From what I have read though some people have trouble taking in b12 or utilizing it due to some metabolic issue and thus can have pernicious anemia. I don't know if this would have anything to do with your situation. Maybe you should look at that as well.
Also I wonder about your extreme fatigue and weight loss. Something doesn't seem right. On your thyroid, what was your tsh level?? As to the weight loss, do you have any intestinal problems- cramping, diarrhea etc. Are you taking in enough calories?
Don't give up tiffer. You are going to need to push forward to get yourself the help that you need. We will support your effort here!

Hi there osteoblast and thank you for responding! Yeah, some people on the Thyroid board here told me to get m Ferritin level tested, so I did and then it came back that low. I went and got all of my lab reports. I had my ferritin level checked on August 08, 2007 and my level was: 21 ...... the normal lab ranges on the lab report are: (10 - 291). But people have told me that is still to low and it should be between 70-90 in women. Although, my family doctor said she doesn't go by that .... she just goes by the regular blood panels for anemia. So, I was like ok. The Endocrinologist also did not say anything about my low ferritin levels when I saw her last week .... Grrrr!!

Yes, I have my new Thyroid results. I will post them here. I was getting ready to post everything on the Thyroid board too. I will post them here first.

October 03, 2007

TSH: Mine Was: 1.110 ........ Normal Lab Results: (0.350 - 5.500)

Thyroxine (T4): Mine Was: 7.4 ....... Normal Lab Results: (4.5 - 12.0)

T3 Uptake: Mine Was: 34 ...... Normal Lab Results: (24 - 39)

Free Thyroxine Index: Mine Was: 2.5 ..... Normal Lab Results: (1.2 - 4.9)

Thyroxine (T4) Free, Direct: Mine Was: 1.14. Normal Lab Results: (0.61 1.76)

Antithyroglobulin Ab: Mine Was: <20 ...... Normal Lab Ranges: (0 -40)

Triiodothyronine, Free, Serum: Mine Was: 3.6 .... Normal Lab Rages: (2.3 - 4.2)


Vitamin B12 and Folate

Vitamin B12: Mine Was: 172 .... LOW .... Normal Lab Ranges: (211 - 911)

Folate (Folic Acid), Serum: Mine Was: 8.7 ...... Normal Lab Ranges: (>5.4)


Those were my results I got back today. I was reading on low B12 a little bit, and it said that low B12 can cause fatigue and weakness, hair thinning, the brain fogginess and weight loss and a couple of other symptoms. I am still trying to find more information on the B12 stuff. Maybe my problem is the low ferritin and the low B12. Heck, maybe they should just check all of my vitamin levels! I never knew about the D vitamin. Maybe I should have that checked too!! I think my thyroid results are all normal right?

Tiffer-Yes maybe alot is due to low ferritin , b12 and possibly vit d. I think other's will say your docs view on the ferritin is bizarre! Ferritin is to me like the gas tank level, anemia is like out of gas. Why not get the ferritin up instead of waiting for anemia. You are probably aware that ferritin is a measure of your iron stores--thus like a gas tank.
I am no expert but the thyroid levels seem to look ok.Others at the thyroid board are probably better to respond to that.
And, yes your b12 needs help that's clear from your labs. Provided you do not have a problem with b12 metabolism, then b12 supplementation should help. But, if it is a metabolic issue then that would need to be looked at.
Also the ferritin issue is somewhat the same way. If your iron stores are low, then the thing is to find out why. I am a vegetarian so the thinking is that it is my diet. I did have an endoscopy and will soon have a colonoscopy to be sure no internal bleeding . So, when the ferritin level is low - the cause should be looked at. Maybe it is dietary, maybe it is not. Your doc doesn't seem to have any curiousity about it though. With your symptoms and labs a doc needs to sit up and take notice and get moving on it.
Since you had the b12 test done on your own, I think you should just do the vit d- it is called 25oh test. On the d , as with the ferritin, you do not want to be at the bottom of the range. Check out the vit d council - I believe it's something like 50-60 they recommend. We have talked before here about docs who let you sit at the bottom of the range --it just doesn't make sense.
You didn't say about your weight loss as to whether you have any intestinal issues that may account for the weight loss -any suspected bowel disorder??
Are you taking in enough calories??
It sounds like you are highly motivated to feel better- that is half the battle, now you need to get the docs to do their job. Can you change docs??

Low B12 cause of some symptoms is an understatement. Please take this seriously because the worst symptom is death… I suffered from pernicious anemia for years which caused so many symptoms that it took three typed pages to list them all. It was the most difficult and horrible thing I have ever gone thru. It has taken me 14 months to get back to normal with some minor issues left. The longer you suffer with low numbers the more likely you are to have permanent nerve damage.

B12 is a requirement to every cell in your body and more severely affects the central nervous system. I would strongly suggest that you demand B12 injections right away from the doctor.

Good luck and best wishes

Tifferz,

I agree with IamUnique. Thank goodness you knew to have your B12 tested. Many doctors don't have a clue about B12 deficiency. Like IamUnique, my symptoms were horrible, and the only thing that has ever been found wrong with me is low B12 and low B6 (haven’t had vitamin D tested yet). My lab’s references for B12 are 200-1100pg/mL, and my B12 was 329 when it was first tested. Low, but “normal,” certainly higher than yours. Based on my symptoms, though, my doctor realized I desperately needed B12, so I’ve been having injections for three months and things are slowly improving. I hope you are able to get relief very soon.

Olwyn

Thank you ALL for responding!! I greatly appreciate it.

Yes, from what I have been reading over the past day online .... Low B12 can cause a lot of health problems and a lot of permanent nerve problems etc. Too be honest ..... I never knew that people had B12 in their bodies. I have heard of B12 and knew it was like in Vitamins and stuff but did not know much more than that until after my results yesterday. The only reason I decided to have it tested on my own ..... was because when I went to the Endocrinologist last week, she said that my thinning hair could be from a lack of B12 and she told me to take a Multi-Vitamin and see if that helps with my hair. She never said she would test me, my family doctor never said anything about me being tested for B12 either. I am just so sick of going back and forth to the doctors, going to specialist and they don't know what is wrong with me .... so I took it amongst myself to order the B12 test online, and went and had it done earlier in the week. I am SO glad that I did.

I did fax over the results of those Labs. last night to my family doctor and also to the Endo. doctor that I went to. I have not heard anything back yet from any of them. I sent a letter to my family doctor along with the results and I asked her if they can schedule an appointment for me with a Hematologist. I hope she will. I wish I could call and make the appointment myself, but I can't .... even though I have PPO Insurance, the doctor has to call to make the first appointment, which really stinks!!

I was surprised at allllllllllllllllllllllll of the symptoms that you can have from lack of B12. I wish I would have known this sooner!! I have just about every single symptom from low B12 ..... at least from tons of websites I have looked at online. My symptoms match perfectly! I have been dealing with this for a year now .... all of these symptoms .... no one knowing what is wrong with me .... uggghhhh!! I just wanna be back to myself. I actually just ordered the Iron test online .... and another regular CBC. I have never had an Iron blood test done ... so we'll see what that turns out to be. I had a CBC done in June 2007, but everything was normal then.

I appreciate everyone responding. It does help reading other peoples stories and having other people respond back to me with their opinions and suggestions etc. It definitely helps me!!

Drs. don't take B-12 issues serious enough sometimes. Japan considers anything below 500 to be too low. We are behind the times here. Many people start having problems when their level hit 300 or so.

Mine is right now 162, having fallen from 464 1 year ago. It was 184 5 years ago with symptoms so bad I was even tested for MS, and I had shots which brought it back up. I had just about every other nasty symptoms of it you can imagine.

Now I am back down again, and starting up with the shots again today for a while to see how it goes from there.

Hi there Isis498, you are 100% right about that!! I have read online that doctors learn about B12 stuff and the side affects of low B12 on people during their FIRST year of Med. School. I guess these doctors just forget?? I am just sooooooooo glad that I took up for myself and paid to get my B12 tested on my own! I do have insurance ..... but paid for this on my own because it seemed like I was getting NO WHERE with all of these doctors and other tests. The only reason I knew about B12 was when the Endo. doctor said "well you could be low on B12, that could be why your hair is falling out". She SHOULD have tested me! I shouldn't have had to pay for it out of my pocket. But actually ... I am glad I did, otherwise I would be back to square one. Not knowing what is wrong with me! Now, everything is coming together!! I am so happy about that. I will be even happier when I am back to my old self. I cannot wait for that day!!!!!

Do the shots hurt when you get them?? How long does it take for you to start feeling halfway good again after the start of getting the shots? I have an appointment with a Hematologist on October 29th. Will be my first appointment with one. It was actually a funny story how I got the appointment, but I don't wanna bore anyone or right a REALLY long post like I always tend to do LOL.

I also just went today ... for a few more blood tests. I had another CBC done. My last one was back in June 2007. Then I have never had an Iron test with TBIC?? I think thats the name of it. So I got that and then I got another Ferritin level. My last Ferritin level was 21 back in August 2007. I should have the results back tomorrow. So I am curious to see what the Iron test shows.

I hope you start feeling better REAL soon Isis!! Ohhh and one more question for you ..... how often do you have to get the B12 shots? Thank you!! :)

Hi Tifferz,

I also found out that I have a B-12 deficiency. My B-12 number was 155. I had alot of the same symptoms that you had (mentioned in this post). I started the B-12 shots about 2 weeks ago. The first week, I had to do them every day. Then I went to once a week for the next month and then monthly. Last week, I went to once a week and did not last long. I made it about 4 days before my feet started burning and the nausea came back. I ended up doing an extra B-12 shot that week. I am making through the 2nd week with one shot. No problems yet.

I do that shots at home. The nurse at my dr's office showed me how to do them in my stomach. The first couple were hard to do but now it's not so bad now. The only side effect that I had was some stomach upset around the 2nd or 3 day of doing the shots. The relief kicked in around the 3rd day. It was amazing to see the difference. I was alot more awake, the burning in my feet stopped and I was actually starting to gain some weight. When it wears off, I start to notice vision changes, nausea, feet hurt more and I start dropping weight.

If your B-12 is low, I would not wait till Oct 29 to start the shots. I would call your family dr now and have them show you how to do it. The sooner you do it, the better chance that you can reverse any damage. When I had to go in to my family dr to get more blood test, my family dr heard that my number was low and he immediately started me on B-12. Don't wait. Time is not on your side with this. The longer you wait, the more damage you will have.

Good luck
alaska

I have done some reading on-line that now says that they are finding sublingual B-12 to be just as good as receiving the injections.

I found some sublingual B-12 at Whole Foods. It is $20 per vial and each vial contains 75 dropperfuls. One dropper contains 1000 mcgs which is a good dose. I bought some. I'm not low on B-12 but my levels could stand to come up some so I thought I'd give it a try.

If you don't want to do the shots, you could try this. You just put in under the tongue.

Hi Tifferz,

I also found out that I have a B-12 deficiency. My B-12 number was 155. I had alot of the same symptoms that you had (mentioned in this post). I started the B-12 shots about 2 weeks ago. The first week, I had to do them every day. Then I went to once a week for the next month and then monthly. Last week, I went to once a week and did not last long. I made it about 4 days before my feet started burning and the nausea came back. I ended up doing an extra B-12 shot that week. I am making through the 2nd week with one shot. No problems yet.

I do that shots at home. The nurse at my dr's office showed me how to do them in my stomach. The first couple were hard to do but now it's not so bad now. The only side effect that I had was some stomach upset around the 2nd or 3 day of doing the shots. The relief kicked in around the 3rd day. It was amazing to see the difference. I was alot more awake, the burning in my feet stopped and I was actually starting to gain some weight. When it wears off, I start to notice vision changes, nausea, feet hurt more and I start dropping weight.

If your B-12 is low, I would not wait till Oct 29 to start the shots. I would call your family dr now and have them show you how to do it. The sooner you do it, the better chance that you can reverse any damage. When I had to go in to my family dr to get more blood test, my family dr heard that my number was low and he immediately started me on B-12. Don't wait. Time is not on your side with this. The longer you wait, the more damage you will have.

Good luck
alaska

You say you are getting these in the stomach; are these getting into the muscle there, not just into fatty tissue? Because B-12 must be given intramuscularly for real effect, usually arm or hip.

I have done some reading on-line that now says that they are finding sublingual B-12 to be just as good as receiving the injections.

I found some sublingual B-12 at Whole Foods. It is $20 per vial and each vial contains 75 dropperfuls. One dropper contains 1000 mcgs which is a good dose. I bought some. I'm not low on B-12 but my levels could stand to come up some so I thought I'd give it a try.

If you don't want to do the shots, you could try this. You just put in under the tongue.

There is a lot of different views on this. I agree with the tried and true method that if you have a very low level like the posters here mention, especially with the severe symptoms, you must have the injections to do well, and get better quickly. THEN, once levels are up, and you are feeling much better, it's worth it to try the sublinguals, then have bloodwork down the road and see how the levels stay.

After my injections and I got my level up, I switched to a prescription B-12 to keep mine up. Down the road, 5 years later, my level is once again lower than it was the first time.

It's a decision you have to make for yourself. Once the loading shots are over, usually you only have to take one every month or 2 anyway. Maybe 3. Not a bad thing.

Hi there Isis498, you are 100% right about that!! I have read online that doctors learn about B12 stuff and the side affects of low B12 on people during their FIRST year of Med. School. I guess these doctors just forget?? I am just sooooooooo glad that I took up for myself and paid to get my B12 tested on my own! I do have insurance ..... but paid for this on my own because it seemed like I was getting NO WHERE with all of these doctors and other tests. The only reason I knew about B12 was when the Endo. doctor said "well you could be low on B12, that could be why your hair is falling out". She SHOULD have tested me! I shouldn't have had to pay for it out of my pocket. But actually ... I am glad I did, otherwise I would be back to square one. Not knowing what is wrong with me! Now, everything is coming together!! I am so happy about that. I will be even happier when I am back to my old self. I cannot wait for that day!!!!!

Do the shots hurt when you get them?? How long does it take for you to start feeling halfway good again after the start of getting the shots? I have an appointment with a Hematologist on October 29th. Will be my first appointment with one. It was actually a funny story how I got the appointment, but I don't wanna bore anyone or right a REALLY long post like I always tend to do LOL.

I also just went today ... for a few more blood tests. I had another CBC done. My last one was back in June 2007. Then I have never had an Iron test with TBIC?? I think thats the name of it. So I got that and then I got another Ferritin level. My last Ferritin level was 21 back in August 2007. I should have the results back tomorrow. So I am curious to see what the Iron test shows.

I hope you start feeling better REAL soon Isis!! Ohhh and one more question for you ..... how often do you have to get the B12 shots? Thank you!! :)

When I first found my low level, I had to ASK for the test, my Drs. never even thought to do one, even with all the problems I was having. :( My Grandmother had PA and I wondered about it.

My hair is falling out too at the moment, bad. :mad: I hope it comes back.

The shots aren't bad at all; my DH gives them. I am on 1 a day for a week, then 1 a week for a month. Then 1 a month indefintly.

I have read, and also been told it takes up to 6 months or more to start to really feel better and neurological damage to correct itself. If you have had it too long, it may never correct itself.

Good luck to you, let us know how your tests come out.

Hi ALL, and thanks for responding Isis498, ChristineVA, and alaska_free, I appreciate it very much!! Isis, I heard that the B12 shots "sting" when they go in. Is that true? Also if that is true, how long does the sting last? I don't like watching needles go in me and even when I get my blood drawn, I look away. I am a baby LOL. I don't like things that hurt either .... BUT .... if the shots will help me get better .... faster ..... then I will do them definitely. The sooner I am back to myself .... the HAPPIER I will be. I am going to throw a BIG party when I am back to myself LOL. But .... before my party I want to make sure my old self is back .... (The OCD me where my house is spotless)!!! Clean my house, have my HAIR BACK, it is sooooooo thin right now, it makes me sad. My hair is straight ... and when I do it after I shower and I turn to the sides, I can see my ears through my hair. Like not my full ears .... but I can definitely see my ears. I hate it. I am soooooo ready to do things other than SIT all day long. I want my energy back. I am tired of sleeping 10 hours a day. I am tired of sitting in a chair, and I just fall asleep .... I don't even want to fall asleep but I get so tired sitting, that I just fall asleep. I want to be more into my daughter .... like I used to be. I used to remember everything .... ALL school stuff. I cannot remember things like I used to. I see her bring home a school paper. I keep it to the side and say to myself, "I need to remember this". Well, most of the time ... I forget. I have no energy to go to her sports games, which makes me REALLY sad. I don't think a lot of people TRUELY understand how dead tired this makes you. They think "oh she's just tired", but they have no clue. It's not that I am just "tired". I seriously cannot get up and do ANYTHING. But oh well, here I go into a long post again LOL ...... SORRY!!


As I was saying lol .... I was thanking all of you for responding and asking about the B12 shots stinging. Christine .... yeap my Dad told me about the B12 thingies that you stick under your tongue. I am hoping to do something like that after I see the doctor. I just wanna wait till after I see the Hematologist, that way he can tell me if I need the shots first to get my level up, or if I can just to something like under the tongue. I am thinking he may want to do the shots for a little bit since my level is pretty low. So, if he does the shots at first ... once I am regular, I will definitely do something like those things you stick under your tongue. I don't like the idea of getting stuck with a needle ALLLLLL the time, eeeekkkkk!! :(

Ohhh, also alaska_free, I wish I could just call my family doctor and get B12. But .... she has NOT called me back since my B12 results. She probably does not think that low B12 is a problem. She didn't think my low ferritin the other month was a problem. She said she doesn't go by ferritin levels since my CBC came back normal. But yeah, I did ask to have her call me, and a week went by, and no phone call back. Sooooo, that is when I took it amongst myself, to find a Hematologist. I called them and I said "can I set up an appointment on my own or do I need to have my family doctor do it". The lady was nice and said "normally your family doctor would call and set the appointment up IF you have never been seen by our office". I was like "Oh ok". Then the lady said "why, are you having a problem"? I said "well kinda". She then asked me what was going on. I explained to her that we have been trying to figure out what is wrong with me for the past year. I said we just found out last week that my B12 is low. The lady then asked what was the results. I said my results came back at 172 which was low on the lab report. She then said "have you had other blood work done"? I said yes. She said "how did that come back"? I said well I had some cortisol tests, they came back high. I said some of my hormone testing came back high and my testosterone was on the low side. I then told her that my CBC came back normal, and then I said my Ferritin test that I had done in August came back on the low side. She then said "what was your Ferritin level? I said it was 21. So, she said "can I put you on hold, I am going to call over to the lab and tell them about your B12 and Ferritin levels and I'll see what they say". I said ok. She came back on the phone and said "I talked to the senior lab tech, and he said that with your levels you do need to be seen, so I am going to go ahead and set up an appointment for you". I said ok. Then she said "call your family doctor and tell them you have an appointment with us and ask them to fax over all of your labs and physician reports over the past year". I said ok.

When I called the family doctor, I got a receptionist. I told her about my up-coming appointment. She was like "did we set this up for you". I said no, I have been waiting for the doctor to call me back but it's been a week and I haven't heard from her, so I called and asked if I could make the appointment on my own, and they said with my levels of low B12 and low ferritin that I need to be seen". The lady didn't sound to happy ... but oh well. I am tired of feeling this way. I wasn't getting anywhere before, so I have to do stuff on my own!! So, I am pretty sure the Hematology place set me up with the appointment for the first available appointment that they had available, and that was the October 29th appointment. Trust me ... I wish I could get in sooner!!

I know I am writing a book her ... sorry!! But ... I need to post one more thing. I just got my labs back from yesterday. I am going to post them here. My Iron stuff came back in the normal ranges! It's weird that you can have Low B12 and Low ferritin but normal Iron stuff. Here is my new blood work, ohh and my Ferritin level dropped since August too!

October 11, 2007

CBC With Differential/Platelet

WBC: 6.2 ------ Normal Lab Ranges: (4.0 - 10.5)

RBC: 4.43 ----- Normal Lab Ranges: (3.80 - 5.10)

Hemoglobin: 13.5 ----- Normal Lab Ranges: (11.5 - 15.0)

Hematocrit: 39.8 ----- Normal Lab Ranges: (34.0 - 44.0)

MCV: 90 ----- Normal Lab Ranges: (80 - 98)

MCH: 30.4 ----- Normal Lab Ranges: (27.0 - 34.0)

MCHC: 33.9 ----- Normal Lab Ranges: (32.0 - 36.0)

RDW: 12.8 ----- Normal Lab Ranges: (11.7 - 15.0)

Platelets: 336 ----- Normal Lab Ranges: (140 - 415)

Neutrophils: 36 - LOW ----- Normal Lab Ranges: (40 - 74)

Lymphs: 49 - HIGH ----- Normal Lab Ranges: (14 - 46)

Monocytes: 7 ----- Normal Lab Ranges: (4 - 13)

Eos: 7 ----- Normal Lab Ranges: (0 - 7)

Basos: 1 ----- Normal Lab Ranges: (0 - 3)

Neutrophils (Absolute): 2.2 ----- Normal Lab Ranges: (1.8 - 7.8)

Lymphs (Absolute): 3.0 ----- Normal Lab Ranges: (0.7 - 4.5)

Monocytes (Absolute): 0.4 ----- Normal Lab Ranges: (0.1 - 1.0)

Eos (Absolute): 0.4 ----- Normal Lab Ranges: (0.0 - 0.4)

Baso (Absolute): 0.1 ----- Normal Lab Ranges: (0.0 - 0.2)




Iron and TIBC

Iron Bind. Cap. (TIBC): 333 ----- Normal Lab Ranges: (250 - 450)

UIBC: 258 ----- Normal Lab Ranges: (150 - 375)

Iron, Serum: 75 ----- Normal Lab Ranges: (35 - 155)

Iron Saturation: 23 ----- Normal Lab Ranges: (15 - 55)




Ferritin, Serum

Ferritin, Serum: 10 ----- Normal Lab Ranges: (10 - 291)



* Thos Are My Latest Lab Results As Of October 11, 2007, Then My B12 Was 172 last week *

Sorry about the book I just wrote!! Just wanted to respond to those of you who posted, and give some answers and also post my latest labs. If you see anything or have any comments, PLEASE post them to me! Thank you!!

Tifferzz :)

Tifferzz-Glad to hear that the pieces of the puzzle are coming together for you! You have really done a great job being the proactive health consumer. Excellent work!!!! I like the way that you got right into the hematologist when your family doc didn't move it along. I hope the hematologist works together with you to resolve your issues and that soon you are up and moving around like you used to.
I know that Christine chimed in about her sublingual b 12 from the health food store that comes in a dropper. I am taking a product that is a b complex incl. b12 that also comes from the health food store that is a tablet that dissolves under the tongue so I guess there are different types of sublingual. It seems to be working for me , my b12 was at the top of the range last time I was tested. I am moving out from the usual md situation, I have an appt. with a naturopath coming up and understand that she is supposed to be one of the best in the large metro area in which I live. Her specialty is women's health issues and I am really looking forward to learning what she will recommend on lab tests and supplementation. I have found that the mds are just not that interested in advising about supplementation until you get in the deficient category. And, also there are some supplements that are known to be helpful for all that they just don't mention. I guess what I am missing is a doctor with a wellness, preventitve orientation. That is what I am looking for. One book that I found helpful in this area was The Real Age Makeover by Dr. Michael Roizen. I have also seen him on Oprah, sometimes with Dr. Oz and also on the public television station. As you are so proactive with your health , you may want to check out his book at the library or book store , it is interesting.

It really IS best to be on top of things like this, especially when some Drs. don't seem to be. Or when they kinda overlook things. Another thing; it is of more significance when a low B-12 shows up in a younger person like this, and the cause needs to be found. Unless you've been a strict Vegan or Vegetarian for quite a few years, had intestinal surgery, taking some sort of medicine that would cause it, maybe a few other reasons, it is not really normal for a younger person's B-12 to get very low.

Pernicious Anemia isn't that common in younger people, but it does happen.

It's best to find out why you have it; not just blindly treat it and go about your business.

Oh, and I reread my first post; my B-12 level was NOT 464 a year ago, it was 517. And has now, 6 months later fallen to 162. Thats a big drop for that short of a time. I think I need to mention that to my Dr., as I haven't had a chance yet.

No, I don't think the shots sting, it's just a quick jab like any other injection. :)

would you all PLEASE tell me what all your symtems were and wereyour numbers all REAl low? mine is low normal and the neouroligist is checking it for the 3rd time have seen that low normal can cause the same symtems . thanks :)

Hi there again Isis and osteoblast. Yeap osteoblast, I was determined to figure out what is wrong with me. I mean I knew it wasn't normal to go how I was ... to how I am now. I was tired of Doctors saying it could be this, it could be that and not test me. I was tired of Doctors not figuring it out. I mean it is their job to figure out what is wrong with us. I think if it wasn't for this message board and me being determined .... who knows where I would be right now. I would probably be a little guinea pig, just sitting here with no energy, listening to what doctors tell me. Telling me ohhhh, your levels are fine. Or oh I don't go by that on a lab report, I go by this. I was also thinking I was just getting old. I am 34 but I was like thinking to myself .... maybe this is what it feels like to get old?? This message board has helped me a lot and I learned sooooooo much from a lot of people here, so thank you all. I don't post all of the time, but I do read different sections of this board just about every day. Good luck with your up-coming appointment osteoblast!! It sounds like you will be going to an awesome place!! I will definitely keep in mind the supplements after my initial appointment with the Hematologist. I just don't want to take anything yet .... because I am not sure what tests he will do. I don't want to alter any tests that he may have planned and I want to make sure nothing else is causing my low ferritin levels and low B12. And ohhhhhhh I love Dr.Oz!!!!! He is awesome!! I will definitely check out that book that you mentioned, thank you!!

Isis, yeah I am curious to see why my B12 is low. I am not a vegetarian and I never have been. I eat meats and eggs and I LOVE dairy!! So, yeah I am curious to figure out why. The only other medication I am on is Percocet. I am on that for my lower back problems. I have had back problemes for yearsssss. I need an anterior/posterior spinal fusion. I don't want that right now, so I am on percocet until I decide to do the surgery. That is how I originally found this board a few years ago. I would always post in the back problems section. I was on Birth Control Pills until the end of August 2007. I am not on B.C. anymore and am just on percocet for my back. I am glad that the B12 shots don't hurt much. I was worried .... I was reading that they sting and stuff, and I was wondering to myself .... how much do they sting?? LOL. Wow your B12 is REALLY low too!! Do they know the cause of your low B12??

Hi meeganone43, I will list all of my symptoms that I have been having for about a year now, I hope this helps you. What kind of symptoms are you having? How low are your lab numbers?

My symptoms have been:

1. Always VERY tired and fatigued with NO Energy!!

2. Brown patches on my face and around my lips.

3. My arms and legs fall asleep VERY easily. Then occasionally my hands and feet will kind of tingle. It almost feels like they are about to fall asleep, but they don't. It's just like the initial tingle of them about to fall asleep, but then don't fully go asleep.

4. I get lightheaded, where I feel like I am going to faint.

5. I have lost 30 pounds since November/December 2006.

6. I bruise easily, I always have a black and blue mark on me somewhere.

7. I get irritated VERY easily now a days.

8. Vaginal Dryness

9. Loss of sex drive

10. Sometimes I get to where my brain cannot think and I forget simple things, my brain used to work VERY well, maybe too well LOL, but not anymore it doesn't!!

11. I am always either hot or cold ... always!! Especially cold hands and feet. During the whole summer, I pretty much had my robe on in the house. If I turned up the thermostat, then I would get really hot, and have to turn it back down. I wake up in the middle of the night sweaty (not every night but it does happen a few times a week).

12. Sometimes I get out of breath and my heart beats really fast just from walking up my steps in my house. It doesn't happen every single time. I never know when it is going to happen, it just happens.

13. I have sporadic bouts of high blood pressure.

14. My hair is thinning BIG TIME and falling out!

15. For the past 2 months or so, my eyes have been doing this weird moving thing. Like both eyes will move side to side really fast for like maybe 2 seconds maybe 3 seconds, but they move back and forth really, really fast and at the same time and I can't stop it. Like it will happen for those couple of seconds, then it will go away.

That is all of the symptoms that I have been having over the past year.

laying at night feels like ther are tinybugsbitingme have acuallygot out of bed and searched . not so much pins and needles in my legs but like sparks going off in them , tired , white patches on upper arms hot or cold , sweating although this statred a year ago they balme it onn menapause , i was 42 then, dizziness fuzzy thinking i don't know what my number is wish i did.:mad:

Tifferzz,

I agree with Isis498. It’s better to start with injections and then perhaps in the future try another method. When I finished my first full week of loading doses, I broke out in ugly, painful acne along my hairline. I asked my doctor if I could switch to sublinguals. She agreed (I’m the first patient she’s had with B12 deficiency), and I quickly went down hill fast. I felt so awful that I was afraid I’d totally messed things up. I quickly went back to injections of cyano B12. By the way, I’ve read that it’s the hydroxy B12 (used in the UK and other places) that stings, not cyano (used in US). My husband injects me in the arm, and the only time it stings is if he accidentally hits a blood vessel, but it’s no big deal at all. I’ve been on injections for three months. I’m supposed to be getting them once a month, but it’s been a struggle to make it to one week without what I call a “relapse.” So I still take shots once or twice every week. My recovery has been completely up and down with the downs being horrible and discouraging. In the past, when I read about other people feeling better, I never thought it could happen for me. But honestly, in the last couple of weeks, I’m finally beginning to have moments of optimism. I told my husband that he must tell me constantly that I’m going to get better; it helps!
I was at 329 when I began treatment; “normal,” but I was very, very sick. I felt like I was dying. New symptoms popped up all the time, and many of them caused anxiety. Even when I got up to 1200, my symptoms continued. I still have symptoms, but they don’t last as long and most are milder than they used to be. I’m tired 24/7, so I’m thinking that’s the last thing that will go away. The fatigue is not debilitating like it used to be, though. I can actually ignore it and forget about it until someone brings it up.

Olwyn

Hi meeganone43, have your doctors done any tests on you at all? If so, you could ask them for copies of all lab tests that they have done on you, that way you could see the reports and numbers on your own. That is what I started doing. They actually thought I had a Thyroid problem, They thought I was anemic (but my regular blood work, called a CBC, came back normal), they also thought I may be going through pre-menopause. I am still wondering if part of my problem could be that (the premonopause). That may explain my high FSH and low testosterone maybe??

Please tell us if you know what kinds of tests your doctors have done on you.

Hi olwynUFO :) Yeah .... that is what I am going to do. I am sure the Hematologist will want to do the shots on me at first. At least from what I have been reading lately ... that is what he should do, so we'll see what he says at my appointment. I hope I am not getting all excited here, and I go there and he turns out like some of these other doctors!! I will be sooooo mad. Although, from how the office staff was on the phone the other day ..... I don't think they will be like other doctors. I mean they scheduled the appointment for me without my family doctor calling them, after I gave them my lab numbers. So that was good! I just hope and pray that they are good and will listen to me and help me figure it out and get me on the right track.

Also it is soooooooooo good to hear about the "cyano". I am afraid of the sting LOL. I am a wuss when it comes to that stuff!! Wow, that is interesting about the acne .... I wonder why the B12 caused that? Is that a side affect of the shots? Eeeekkk ..... give my hubby a needle?? That is scarey, ha ha ha. He may try to get me back for being so irritable lately LOL. I have been reading that it can take awhile to feel better and not be so tired after giving your body the B12 it needs. I think I am thinking "oh, I will get the shots, in a week I will be back to myself". I better stop thinking that way! I am glad that things are looking better for you olwynUFO!! I am glad that the symptoms don't last long now and also glad the fatigue is starting to get a little better for you. I hope it continues to do so :)

Have they figured out why your B12 was low? Did you have anything else that was low or high? Like low ferritin or anything like that?

Hi Isi8,

I do subcutaneous injections for the B12. It goes about an inch below the skin in the fatty part of the stomach (or whats left of it). It gets absorb into the blood stream within a couple hours. From what I have been told and researched, it is common to get them this way.

Alaska

The only other thing that tested low for me was B6, so I'm taking a B-complex vitamin every day. My ferritin was 89 (10-232ng/mL), considered normal. I take Flintstone chewables; I read about them on this board. I've been a vegetarian for ten years and a vegan for three, and I never bothered taking vitamins before this. I've reintroduced dairy into my diet, but I'm afraid to eat meat besides fish. I used to eat lots of soy, but I've given that up since I've read how it can wreak havoc on your thyroid. Olwyn

Tifferzz,

The shots really don't hurt much. Thanks to the B-12 deficiency, part of my stomach is numb. So I don't really feel it. My dr has me use a very tiny-insulin needle. I am using the cyano and get no stingy at all. Just a tiny pitch and that's it.

I am actually having problems with my family dr. He refuses to believe the B-12 test that my neurologist ordered is correct. The same test that showed 155. The funny thing is that I got a call this afternoon from the neurologist office at a major medical hospital asking me to come in early for a follow up appointment to go over all the test. It took me almost 3 months to get in for a new patient but only a week for follow up. Makes me wonder if they know something that I don't. I can live with the B-12 deficiency, if we manage it correctly.

This is the first week that I have made it through with just one shot. Last week was pretty hairy going from 1 a day for 7 days to 1 a week. I relapse last Friday and it was scary.

alaska

Hi Meegan,

Alot of my symptoms started about 7-8 months ago. The symptoms progressed quickly during the last 3-4 months. Here are the symptoms

1. Weight loss. Lost about 20-25 lbs in the last year. It is hard to gain weight.

2. Nausea and no interest in eating

3. Neuropathy that started in the right foot, moved to left. Then moved to the knees, shoulder, and hands.

4. Weakness in the hands and some in the feet

5. Hair falling out

6. Dizziness and occasionally will pass out. Found myself on the floor several times.

7. Always tired but blammed it on grad school.

8. Heart always racing/beating fast.

9. High blood pressure

10. Bruise easily and extremely heavy periods.

11. In the past couple months, vision is weird. Some twitching and blurry vision.

My B-12 level in April was around 315. Now, in September it dropped to 155. The symptoms progressed around May-June.

alaska

Alaska Free

Are you in Anchorage? I just got word today that my B12 lab was 112. You have mentioned a few docs and was hoping for a good/bad report!

I learned about low b12 from a show one night. Mystery Diagnosis. I have been on several pain medications for almost 6 weeks following a cholecystectomy that only made my problems WORSE! I am in chronic pain, chronic fatique and chornic gastric issues. Even with the chronic fatique the pain pills keep me up most the night hence catching mystery dianosis ha ha

I am happy to read this thread and see that I think we were definetely on the right track. This is the first and only time you will hear me state "God bless TV" :rolleyes:

Unfortunately I have never had a b12 level before so I don't really know what is "normal" for me or not.

Alaska Free

Are you in Anchorage? I just got word today that my B12 lab was 112. You have mentioned a few docs and was hoping for a good/bad report!

I learned about low b12 from a show one night. Mystery Diagnosis. I have been on several pain medications for almost 6 weeks following a cholecystectomy that only made my problems WORSE! I am in chronic pain, chronic fatique and chornic gastric issues. Even with the chronic fatique the pain pills keep me up most the night hence catching mystery dianosis ha ha

I am happy to read this thread and see that I think we were definetely on the right track. This is the first and only time you will hear me state "God bless TV" :rolleyes:

Unfortunately I have never had a b12 level before so I don't really know what is "normal" for me or not.

Hey, not Alaska here, but I can tell you that "Normal" for ANYONE is definitely not close to 112! :eek:

I imagine on your report it will state your lab range would be somewhere around 220-850 -ish as normal ranges. You are at the bottom of the barrel. An average normal person who is healthy would be around 1,000 or so.

I would always get paper copies of any lab work I have done if I were you and keep them, if you don't already, so you can refer back to them in the future. I do. Just ask for them, they are required by law to give you copies, or of any of your medical records for that matter.

I hope you are on, ( or will be quickly since you only heard about this today) shots to get yours up by now.

Hope you get to feeling better soon.

Isis

Thank you. I requested the lab today but the doc hasn't signed off on it yet...which means he hasn't even SEEN it yet. I would have thought my nurse would have waived a B12 number like that under his nose the second it came in. (sigh) The receptionist (bless her) put my labs and chart on the top of his pile next to his lunch. Hopefully I will hear from him soon. To feel so bad and know there is a chance that a few shots might make me feel so much better makes for a very impatient person :mad:


Now that I have looked over the b12 deficiency symptom list it all makes sense. Except for the chronic pain post choly. I truly thing its a sphincter of Oddi dysfunction. If I can these two things fixed perhaps I may feel normal again.

Does anyone remember "normal"?

Is there a support board for just b12 deficiency or pernicious (sp?) anemia?

Edited to ad: He looked and signed off and they faxed. I heard her wrong on the phone I guess. My B12 is 150 not 112. Still pretty darn low huh?

Low B12 can really mess up a person, even if you're borderline you can still experience symptoms. Fatigue is one of the very common symptoms! Other symptoms can even affect your neurologically by damaging nerves.

You need to find out what is causing your B12 deficiency. It can be a number of things, some are: being on oral contraceptives, heavy period, insufficient B12 in diet (ie. not consuming enough meat, vegetarian, vegan) If this is the case, you might need to take some B12 supplements, and/or get B12 injections, until your levels are back up to normal. After that, you need to solve the problem that is causing low B12 levels, or regularly monitor your levels.

Pernicious anemia is a condition that happens when the intestines are unable to absorb B12 due to lack of the intrinsic factor. The test to see if you have pernicious anemia is called the Schillings test. (It's an easy procedure) If you do have pernicious anemia, it's not curable, but controlled by regular B12 injections.

When I was borderline low, I got some B12 injections. I also did the Schillings test, and lucky for me I didn't have pernicious anemia. My doctor thought it was probably due to my diet (I don't eat a lot of meat) and because I was on the pill, and this can affect B12 absorption. Now my levels have been normal, and constant for a couple years.

Get your B12 levels back up ASAP, and good luck! :D

Doc finally called. He wants to do b12 injections once a week for four weeks then check my levels again. I asked him if he thought once a week to start was enough. He said he thought so....:confused: Not that I am wanting needle sticks but I don't think that is enough to start with all the research I have done. Ill start tomorrow morning and see how I do I guess!

Hello CTweet

There is a pernicious anaemia society where you can ask questions and will get answers. Other tests to see if you have pernicious anaemia (PA) are Intrinsic Factor antibodies, Parietal Cells antibodies and serum gastrin. If you have not had any b12 supplements, the MMA test is supposed to be accurate. The Schillings Test is not always accurate.

A b12 level of 112 is quite low. In my opinion you should be having loading doses of B12, that is once daily for 2 weeks then going on to twice a week, then once a week, and finally once a month maintenance. That way you will get your b12 levels up more quickly. It is essential to keep check on your folate and Iron levels as well.

Regards,
Cats

Yes, 150 is still very low. And true, you really need to know the cause. Did he not mention any testing for PA?

I also think it would be good to have more than one shot a week for a while, but if that's all he'll give you, well.......

Why not also get some sublingual B-12 from the health food store and use it at the same time? It couldn't hurt. The Methyl Cobalamin along with folic acid works best, and should help boost your levels while you are on the shots.

There isn't a specific PA forum on here but are several out there online I've seen.

My whining worked! I got my first B12 injection today. My husband if going in with me in the morning to learn how to do the injections. We will go once a day for 10 days then check my levels.

Its a nice feeling to have HOPE that I might actually feel better...hopefully soon.

CTweet,

Sorry it took me forever to get back to you. I don't live in Alaska yet. I am wrapping up my Master's degree and will be heading up there to teach in Sep 2008.

I also deal with chronic pain and adhd. I take stimulant medications to help manage the adhd, so I never could tell if I was tired. It looks like we have about the same level of B-12. I was at 150 before I started the b-12 injections.

It is amazing to feel the difference now that I am on the B-12 injections. The burning and pinpricks in my feet are gone. i am able to wear socks and clogs just in time for winter (I thought for sure that I would be spending another winter in sandals). I also feel like I have more energy.

I have been experiencing some ups and downs. I did great when I was doing daily injections. Then I went to weekly and struggled. I had problems with my feet, nausea, weightloss, no appetite, and vision problems. I ended up doing the injections every 6 days. When I went to 1 a week, I dropped about 8 lbs within 2 week period.

Luckly, I went back for follow up appt on Monday with the neurologist that found my B-12 deficiency. He was impressed with my pain in my feet down but not with my weightloss and brusing. He said that with my level being this low and having symptoms in between the injections, he increased my B-12 to 2 injections a week for the next 6-8 weeks. Then 1 a week for the rest of my life.

At this point, they have no clue why I am not absorbing it. They did numerous blood test to check for celiac and PA and they came back normal. The neurologist wants my family dr to do a Shillings test, but i am not sure about it. The funny thing is that I notice when the b-12 runs low. heck, my stomach knows and I can't afford to lose anymore weight.

alaska_fee

When my husband and I went in Saturday morning, the office had changed their mind AGAIN. They did show my dh how to do the shots but don't want me to have another injection until Friday which would be a total of a week between. I am not happy. They know I am NOT happy but what am I to do? This is my GP and I have had to bring them (and fax them) information regarding B12 deficiency myself. I love my GP however I feel that if I have to educate their office perhaps they should be referring me out.

Friday night I was more tired then I have ever been. My balance was worse too. I was outside talking with my husband and could not stand up straight. I know your symptoms can get worse, or wax and wane between injections but goodness sakes! I felt like a drunken sailor (minus the language but I sure felt like rattling off a good sentance or two).

At this point, I feel like I need to refer myself out. I have no patience or tolerance. I have four children, work full time and all the vairious activies that go along with a large family. I can not afford to be down like this, its not fair to all of them.

I find myself getting pretty depressed and beyond frustrated. The GP did say they want labs on Thursday to see if that one shot boosted my number :confused: I really don't think it would have. Plus, now that they have given me one shot wouldnt that scew any MMA test they might do now? Or would one week out be okay.

I think I am calling a neurologist today. There are only two in Anchorage that is preferred on the blue cross list. I hope they can tell me my GP is on the right track. I just don't feel like I can gamble. I am rambling....

Alaska Free: To bad this board is strictly anonymous. When you hit town it would be great to hook up and compare notes. Perhaps even start a support group. The more research I do the more I realize that this is really something physicians need to be taking a good look at! :mad: I am glad you can wear shoes. I don't have to many problems with that kind of neuropathy. I do get the sleepies in my legs and arms, carpal tunnel, terrible balance issues, horrible forgetfullness and foggy/fuzzy thinking. I also have chronic pain in my abdomen. They removed my Gall bladder on the 19th of Sept. Not due to stones but an ejection fraction of 15%. They felt it was colicky and causing my URQ pain. It did nothing but increase my pain 100 fold. Wondering if its a different type of neuropahty...along with my chronic diahhrea

What wonderful bodies we have. :(

My nurse just called from the GP's office. They changed their mind and want me to inject .3 per day for 5 to 10 days then come in for labs.

I feel like banging my head against a wall :blob_fire
My husband said we are paying for their learning curve.

Ill do the .3....but I also put a call into a MSN here in Anchorage that specializes in neurology and helps quite a few MS patients. Her nurse said she might be able to help me.

I got a copy of my labs too. On top of my B12 being 150 it also states my
triglycerides 319 H (30-170)
cholesteral 204 H (131-200)
Urea 7 (7-25) Borderline
Bun/Creatinine 6.9 (7.0 - 23.0) Low

Do those have anything to do with B12 deficiency?

Hey all, I had my first appointment today with a Hematologist. They were all soooooooo nice here!! The whole staff was nice and the Doctor was really nice. I spent all but an hour and a half there ..... and it wasn't from long waiting. I first got there and signed in and all of that stuff then they took 3 things of blood from me. They did just a real quick CBC ..... it may not have been a complete CBC, but they ran the blood (the lab is right there at the office), so they ran the blood and by the time I went back to the room and the Doctor came in, they had run some of my blood for a quick work up. Those numbers were pretty much identical to the CBC I had just recently posted here. I think it's earlier in this thread.

Anyway ... this Doctor spent a lot of time with me, which I liked. He didn't rush us out, he took his time and went over everything .... all of my symptoms, all of my recent blood work etc. He said that my Iron Stores (Ferritin) are all but depleted. My Ferritin was at 10 a couple of weeks ago. I was sooooo happy to finally have a doctor care about Ferritin levels!! He had asked if I noticed any blood in my stool, and I told him I have been looking and haven't seen anything.

Soooo, since they took extra blood from me when I first got there, he is going to re-test my B12 and see where that is at. It was 172 a few weeks ago. He is also testing me for "Pernicious Anemia". The weird thing though is ... I thought they test you for "Pernicious Anemia" through a Urine Test?? I think it's called a Schilling Test or something like that?? Well, he said they are testing for "Pernicious Anemia" from the extra blood that I had drawn. Can they test for that with a blood tesT?? He also said they are testing like some kind of Antibodies and something to do with Gastric something or other?? They are doing it all through the blood that I had drawn. Does that sound right to those of you that have gone through this ?? I go back next Wednesday to get the results back from those tests that they are running.

My only other question is ..... does "Pernicious Anemia" also cause low Iron stores?? I am just wondering if my Low B12 and my Low Iron stores are from a related problem?? Or do you think they are two seperate things that we need to make sure the Doctor looks at? I mean this Doctor is nice and all so far .... but I want to make sure I am asking him everything I need to be asking and making sure he is testing for everything he should be testing for. This stuff is all BRAND new to me, so I am not totally 100% sure on it all yet.

Hopefully you all will re-read this post and can answer my questions, if not I will try posting a new thread about it. But if you all know anything about my questions, PLEASE post what you know. Thanks in advance for any help and suggestions that you can provide to me!! :)


Tifferzz

Tifferez,

This stuff is so overwhelming. I am still trying to piece it together. I think I finally went through that angry stage with my family dr.

The neurologist that I saw did the blood test that you are talking about. They are able to check the antibodies through the blood and they may be checking you for celiac (which deals with digestive system).

I do not know much about PA. I suspect I will be seeing the hematologist after they check my CBC this week. I have been getting bruises on my legs and I haven't hit them or bump them into anything.

I would ask your dr about your iron stores and low B-12. I would think that it might be connected because B-12 is responsible for blood and nerves. I think that your dr is covering all of the basis. The tough part is the waiting game.

Jennifer

CTSweet,

I swear we must have the same dr. I have spent the past 2 months educating my dr and it has been frusturating. Luckly, my dr knew to do 1ml shot a day for a week, then 1 a week for 4 weeks then 1 a month.

The cruddy thing is that my dr was stuck on this dosage schedule and did not take into account the problems that I ran into when I went to 1 a week. It was the neurologist that sat down and listened to me and changed the dosage. Now, my neurologist made the recommendations but my family dr is still protesting it. I got a phone call last week from my family dr requesting to come in for a follow up appt. I suspect that he knows I am mad at him or he got the stuff from the neurologist.

The off balance stuff is what I experienced when I did the 1 shot a week. On Sunday, I felt the same way and was nausea. I couldn't do a shot till today and now I feel great.

With the MMA, I would not do it. The b-12 shots will affect the MMA results. It would be a waste of your money. There is amazing book that I picked up that talks alot about B-12 deficiency. It is called, "Could it Be B-12". You may need to go to your bookstore and order it. Worth the money.

I know that neuropathy can go into your stomach/digestive system. We thought that is what happen when I stopped eating and was always getting nausea. Also, parts of my stomach before I started the B-12 injections were numb. Now, a month after the injections. Let's just say the injections are hurting. Good sign, the feeling is coming back.

alaska

Not only do we seem to have the same doctor but appear to be somewhat of the same person! LOL!

I was going to report happily that my husband is in the wrong field and should be a nurse! I didn't even feel the shot! However now that you reported parts of your stomach were numb....it makes me wonder if my BUTT is numb! :jester: (just trying to find SOME humor in this!)

However, what you have said makes me feel pretty good about our decision to interview a neurologist! I hope I get a call back tomorrow and we can discuss her knowledge of this whole B12 issue!

I have the print out from a book site that gives an exerpt from "Could it be B12". Its almost freaky you mentioned it. I was planning on taking it to B and N to see if it could be ordered.

I really appreciate all of your help and insight. This is a sucky road to travel.

What's the worst symptom for me in all of this? Thinking of things I want to post to you and forgetting them right before i start the sentance. The forgetfulness is the worst for me. I have been living with the stomach issues forever, the pain for almost 8 months, but I just can't get used to the mush brain. I hate it.

Tifferzs
I hear so much frustration in your post and it makes me hurt for you because I know exactly what you are feeling right now. I hope you get yours sorted out soon and things get better for you :hug: In regard to being tested for celiac. The blood tests aren't reliable. You can have a positive and not have celiac...and you can have a negative and still have Celiac. The only real tried and true diagnostics for Celiac is the upper endo with LOTS of biopsies. Only a few biopsies may miss the damaged parts. Make sure the doc gets enough samples if you go that route. Also, many Celiac boards on the net will state the real true Gold Standard Celiac test is a gluten free diet of six months or better. I ended up being negative for Celiac in all tests however I am actually "Allergic" to wheat, soy, oats, rye (among five million other foods and environmentals) so if you are negative for celiac in all testing accounts it doesn't hurt to see an allergiest to test for Allergies to certain foods. Food allergies can rip apart and damage your stomach just as much and kill your intrinsic factor (from what I have read so far)

Carla

Hello Tifferez,

The blood tests for pernicious anaemia are Intrinsic Factor Antibodies and Gastric Parietal Cells antibodies. These are not conclusive tests because only 50 per cent of people who have PA will have IF antibodies. So even if you test negative for IFA, you could still have PA. However, if you test positive for IFA, then it is conclusive for a diagnosis of PA. I know, confusing. Gastric Parietal Cells antibodies can be present in people who do not have PA but another autoimmune disease such as hyper/hypothyroidism.

My daughter was diagnosed with PA 14 years ago when she was 27 years old and I am still astounded that there is such a lack of information amongst the medical profession about PA and B12 deficiency. There is a Pernicious Anaemia Society based in the UK (note the spelling) that provides a lot of information on PA and B12 and can answer questions.

When receiving injections of B12, it is essential that your doctor monitor folate and iron levels. B12 needs a healthy supply of folate and iron in order for it to be properly utilized in your body. Yes, pernicious anaemia can cause low iron stores, in fact, it is quite common even to have all three anaemias, being PA, Folic anaemia and IDA (Iron deficiency anaemia).

Regards,
Cats

YESSSSSS, catscandance .... I am 99.9% sure that those were the two words that the doctor used yesterday "Intrinsic Factor Antibodies and Gastric Parietal Cells Aantibodies". So, are both of those tests that he is testing me for, do they both test for "Pernicious Anaemia"? Or is one of the tests used for testing for "Celiac's Disease"? Do you know catscandance? If these tests come back negative ..... what is the other tests to do to check for Pernicious Anaemia? Would that be the Schilling's Test (spelling)?? Or is there something else? Ahhhhh, and thank you on answering the question about if Low Iron Stores and Low B12 are common in people with Pernicious Anaemia. That was what I was trying to find last night and didn't really find anything on the web. Maybe I am not typing in the right thing.

Yeah ... this Hematologist is really nice .... he seemed to really know his stuff. He was explaining all kinds of stuff .... the bad thing was, he is Indian, so once he really got into explaining things .... it was harder for me to understand because I was focusing so much to understand his words and I was saying "what's that" or "huh" several times, but I didn't wanna keep doing that, LOL. But he was very nice and definitely wants to figure out what is wrong with me and help me. I just have to try and focus harder on his words when he really starts getting talking about things because he starts talking really fast once he is explaining things. Now it just stinks waiting. Like I sit here and I am like ...... maybe after a year of trying to find out what is wrong with me, are we going to finally get a real definite answer???? Then I think, if it is this Pernicious Anaemia, then we can get me on the ball with fixing me and getting me back to my normal self and I am soooooo excited for that to happen. Then I also think .... it's been so long and no real definite answers, what if it isn't Pernicious Anaemia then what?? Now I am also scared that what if this test comes back negative and I really do have it, since the blood tests for PA aren't 100% accurate? I wonder if he will do further tests to see if it is PA. It just stinks having to wait a week to find out the results. :(

If it is PA, I am wondering if me being on Percocet for so long has something to do with the lack of stomach acid or caused it in anyway?? I am on Percocet for my back (collapsed disc). I have been on medication since like 2000 or 2001. For like 2 years before that .... I was taking 4-5 Tylenols or Motrins at a time just to try to get the back pain to go away but it wasn't helping, so after further testing on my back and seeing Ortho. Surgeons and Neurosurgeons etc, now I have been on the Percocet, which helps ..... doesn't take it totally away, but it's livable. But I am hoping that hasn't done something to my stomach and caused me to lose the stomach acid. That is .... if it turns out that I have PA. :confused:

Also, thank you soooooooo much CTweet and alaska_free for responding .... I do take in everything that you all tell me and I thank you all for taking the time to post things. EVERYONE'S posts help me!! So thank you all very much!! ;)

Tifferzz

Ctsweet,

The worst symptom for me is the neuropathy in my feet and the nausea. You will be suprised that some areas that are numb now, then magically the feeling comes back a couple weeks after the injections. The neurologist suggested switching over to IM but he said it would hurt more. I figure I will continue Subq. I may ask my dr next week what other areas I am allowed to use to give my stomach a break.

catscandance,
I had both of those tests you mentioned and they came back normal. Is it possible to have PA even if those test come back normal. Any other way to check for it. Right now, my neurologist is telling me that I am not absorbing it but they have no clue why. Also, I deal with alot of bruising, pale skin, dizzy, and bleed very easily.

Tifferez,
Once it gets all figure out, a big weight will come off your chest. When I found out I was relieved but at the same time angry. Try and get that book, it will fill in alot of the gaps.

alaskafre

Wow sometimes I HATE living in Anchorage. I can't get into the neurologist until Nov 21. One of my girlfriends see's her and I am hoping she can use her long time patient status to slide me in earlier. We will see.

AK Free: Can you describe what it feels like to have a numb stomach? Sometimes I get an erie cold feeling in my throat and stomach, like an ice cube in there. Bazarr. What is IM? I bruise really easily also. Same thing, they just appear out of nowhere and you can't remember hitting yourself. And when you DO hit yourself...yowza what a humdinger you get. I also have blood vessels that break really easily, especially in my hands. Those sting. My brain is so stupid tonight I couldnt help my son with fourth grade math. He had to fax it to his dad and do it "telephonically". Thank God for technology.

Tifferz...do you get wierd sensations like that? In your body?

Hi there alaska_free, yeah I do want to get that book that you mentioned here. I need to write it down and put it in my pocket book so I remember to look for it the next time I am out. Yeah, you are right .... once I know for sure I will be relieved BUT in the back of my head, I am still angry that my family doctors couldn't figure this out, my Gyno. couldn't figure this out, a cardiologist couldn't figure this out and an Endocrinologist couldn't have figured this out!! I go to a first appointment with a Hematologist and he says right away after going over everything that he thinks I May have Pernicious Anemia and was going to test me further. So, yeah I am mad that these other doctors hadn't figured it out. I was told "get off the percocet, quit smoking and quit drinkined iced tea" by the cardiologist. He also told me "oh your heart palps are normal, everyone gets them". He mad me ANGRY!! I was also mad that the Endo. Doctor couldn't figure it out or wouldn't test me further. But anyway .... yeah I will happy once we know for sure then can working on fixing it!

Hi CTweet, I have a lot of symptoms!! But ..... you asked about the sensations in my body. I don't feel anything weird in my stomach other then I get full really fast from eating! I used to be able to out-eat my hubby but I haven't been able to do that in months. The only other sensations I get are in my hands and feet. I get the feeling like pins and needles kind of. It is almost like they are about to fall asleep, but they do not fully go to sleep. It is just the initial feeling you get before like your leg would fall asleep ya know what I mean? Only it doesn't go fully to sleep. Also I will get very light like vibrations occasionally .... and those are mostly in my hands. Those are the only sensations that I get. I am like you both .... I bruise wayyyy easy. I usually always have at least one bruise on me at all time. I have no idea where most of them come from. You are right though ... when you do bump into something .... that bruise you get it definitely a lot bigger than the ones you have no idea how they got there!

Hi Tifferzz and Alaska_Free,

The IFA test and PCA test are not conclusive tests for PA but it is a beginning. If you test pos. for IFA then that is a definite diagnosis for PA. The problem is though only 50 per cent of people who have PA develop antibodies to the Intrinsic Factor so even if you get a normal result, you could still have PA. Gastric Parietal Cells Antibodies, on the other hand are present in about 95 per cent of people with PA but they are also present in people who do not have PA but may have other autoimmune diseases, such as hyper/hypothyroidism. If you test pos. for PCA then further tests need to be run. Other tests for PA are serum gastrin (if the result is elevated that usually means PA) homocysteine, again if elevated could be PA or a folic deficiency. An endoscopy to look at the stomach, to look for PA and coeliac disease. It took 2 years for my daughter to get a diagnosis because her doctor at the time did not think to check b12 levels..but in a way, she is fortunate other tests were done when they were trying to find a diagnosis because it was discovered that she has a mitral valve prolapse, causing a mild heart murmur. Heart palpitations, heart murmurs are all associated with PA.

Even when you start on injections, it still takes time for your body to recover and sometimes you may not notice any improvement for 3 to 6 months. It takes time to rebuild B12 reserves and that must happen before you begin to notice improvement. Recovery can be very up and down...like 2 steps forward and 1 step backwards but eventually the step backwards becomes smaller.

Because PA is an autoimmune disease you are more susceptible to other autoimmune diseases such as hyper/hypothyroidism. The Pernicious Anaemia Society has stated that it is essential for any PA patient when having blood tests to be sure to include the Iron, Folate and TSH and thyroid antibodies tests as a means of managing PA. Some of our members have all 3 anaemias being PA, Iron, Folic and thyroidism. My daughter is fortunate that so far she just has the PA and folic anaemia.

Regards,
cats

Cats:

Very interesting information regarding other autoimmune disorders. I was severely hyperthyroid (I didn't know that was an autoimmune disorder) for years until I had a partial thyroidectomy in 2000. My Thyroid panels have been normal ever since. I ended up also have a SVT repair (superventricular Tachycardia) last year to almost the date (a few days before halloween). They said it was from damage caused by years of being hyperthyroid.

I had a really bad night last night. Terrible pain in my URQ and into my back. My right arm was tingly all the way down to my thumb.My thumb buzzed and felt numb all at the same time. The pain still sucks today and I am trying to work and I just WISH I could see the new doc much sooner then the 21st. I couldnt even hold onto a folder this morning (regular folder you put into a hanging file folder). It just slipped out of my hand while I was talking with a coworker like it was water. I get more and more embarassed at work. Especially when I weave down the hall smacking into a wall...or leaving an office and hitting the door jamb....Is anyone else terrified at the thought of walking the neighborhood tonight to trick or treat with the kids? :(

Tifferz and Ak Free: Perhaps we should start the "Big Bruise Foundation"

You give great information catscandance, thank you!! When I was reading your last post and you said about your daughter having "mitral valve prolapse", I remembered seeing that on my Echocardiogram report. I do not have a prolapse but it says something about "mild to possibly moderate mitral regurgitation with no evidence of mitral valve prolapse". Then it says something about "trace tricuspid regurgitation with PA pressures of 20 mmHg".

I am wondering if I do have Prenicious Anemia and I wonder if that is causing those little things with my heart? I know it is not anything major, but I am wondering now that you said that about your daughter, I wonder if they are connected some how?? I also wonder if ..... I would have just listened to the doctors when alll these other tests were coming back normal and if I wouldn't have persisted that something else IS wrong .... could that lead to a valve prolapse all together?? All of the doctors did keep thinking it was a Thyroid problem .... I had the Thyroid tests run like 3-4 different times by the different doctors, but they still keep coming back normal. So they didn't know what was wrong with me. Thankfully for these message boards ... people started mentioning B12 and Ferritin ...... and they were telling me I should have these checked. That was when I had them tested and sure enough they were both Low.

Ugghhhh I can't wait until next Wednesday to get my test results back!! I wonder if I can call and ask for copies of the blood work from the other day?? I wonder if they would give it to me or if they wouldn't since I am being seen next Wednesday to go over the results. Hrrmmm, maybe I could try and see if they will send me the copies awhile that way I know if I have PA or not before my appointment next week.

Hey CTweet, I am all with ya on the "Big Bruise Foundation", LOL. :D I can't wait until I can see myself without ANY black and blue marks!! I am so used to them now .... it's just like ... oh there's another one, oh and there's one too or hrrrrmm, where did that one come from? It's kind of part of me now LOL.

Tifferz
No kidding! I can't ever remember a day I didn't have a bruise somewhere. I just ordered Could it be B12 from the bookstore. It should be here by Weds of next week. There is a pretty long exerpt online I found last weekend. We can't post other websites so just search it out with the title and it will come up.

If you know what lab did your tests you could call them and as for a release of info to be faxed to you, fax it back and request your labs. I know my GP won't fax me my labs until he has read them and signed off on them. BUT you own them and the lab would have to give them to you. I have no patience so I know the drill :angel:

Hi everyone,


Ctsweet, the numb feeling is hard to describe. I just can't feel it. The first couple weeks, I would do the injections and wouldn't feel the needle. Now, it hurts. I also get a full quickly after a meal. I might get in a couple bites then stop. I lost alot of weight from this.

Tifferez, I am still angry at my family dr. He knew of the symptoms that I have been experiencing but kept passing the buck to the gyn, pain dr and neurologist. I do not think he took me seriously and I have some serious doubts if I want him as my family dr. I figure, I would just stay with him until I move to Alaska this summer. When I told my family dr about problems that I was having with my heart racing, he stuck me on another medication.

catscandance, I have noticed alot of ups and downs when starting the injections. It's been a balancing act. I did great when I was on them every day for a week. Then we went to 1 a week and lasted about 4 days. I had problems with nausea, severe burning pain in my feet, off balance/dizziness, weird vision stuff, dropping stuff and bladder accidents. I could tell when the B-12 level drops. It's almost scary. I would have 4 good days, then go down hill until the next shot.

I am hoping they will send me to a hematologist. My family dr has requested more lab work because of the brusing and bleeding for several hours after blood draws. So, I get to go in for dart practice tomorrow. Depending on the results, I will be seeing a hematologist. At this point, with a b-12 deficiency and a prolong PTT and brusing, I have to wonder if this is connected to anemia.

alaskafree

For any of you not doing the injections IM, and not beginning to see some signs of feeling better after a couple of weeks, I very strongly suggest doing them that way. The B-12 gets in deep into muscle tissue that way and you know for sure it's IN there. I know that some may say that subcutaneous is fine, but my 2 Drs. say not to do it that way. One is a Neuro. DH was a nurse years ago, and he was taught that way as well. I even asked the pharmacist, he said IM.

And no, if done correctly the IM is not painful. He gives me mine in the hip and I barely feel them. In the arm I do more so, so now I only do the hip.

Isis: I get them in the hiney, in the muscle. I haven't noticed any improvement yet but I am ONLY getting .3 a day....every night my husband looks at the needle and states "this is just NOT enough" :confused:

Alaska: Can't you force a Hematologist referral? Can't you go to one yourself? Are you stuck with an HMO?

Do me a favor...get this figured out BEFORE you get to Alaska (are you coming to Anchorage?) because I think the knowledge base in the lower 48 is better.
I can relate to the full fast feeling. I can't eat much and I feel *ick* I hear you on the prescriptions. It seems that is all the docs want to do. "Here, take this pill and shut up". Last week I cleaned out my purse and I had about 7 pill bottles in there of various prescriptions. My last few appointments I have been telling them over and over..I don't WANT to be on pain medication, I don't WANT to feel this way. Stop giving me pills that do nothing and figure it out! :mad: :mad: :mad:

Hi Ctweet,

I do not need a referal from my family dr to see the hematologist for the insurance company but the hematologist request one. They did do the labs today, so I am hoping we get the results soon. I suspect that we will have this figured out before I head up to Alaska. I will need to find a dr that will just take it over and manage it. I am 33 yrs old and on so many medications.

Isis498, I have thought about doing IM but here is the catch, It would be hard for me to do them alone. Since I live alone, sq works out for me. I am so busy that I do not have the time to go to the family dr every week.

alaskafree

Alaska Free
Well if this neurologist is any good that I am seeing on the 21st Ill let you know. One of my good friends says she "Rocks" so I am hoping for the best!

Let us know what your labs are.
I wonder why they requested a referral especially with your history. Wierd.

I have been checking out a site called the Pernicious Anaemia Society (oversea's spells anemia differently?) I am going to register there under the same screen name. I am 38 and on TONS of meds too....if they will take me they should take you being 5 years younger :cool: LOL So funny....I had been thinking the last few years, that I have been feeling like this because I am "middle aged". What a hoot huh? :D

Ctweet

Hey there alaska_free, I was just reading the board and then I remembered that you said you were going for your Labs. the other day. Just checking to see how you made out?

CTweet, that Pernicious Anaemia Society site is a good site. Someone mentioned it here and I found it ..... it is definitely a good site to read and learn stuff from! Ya know?? That is really weird about when you feel like we do .... how we can blame it on "old age" or "middle age". I was doing the same EXACT thing earlier in the year. I kept telling myself and other people that I must be feeling the way I feel because I am getting older. That is what I was thinking it was at first!! I am 34 years old by the way .... after I started getting a lot more symptoms I was like .... hrrrrmmmm, maybe this is not "old age/middle age" after all, then I finally went to the docs. It is definitely weird how we say that!! I have heard of lots of people saying the same thing with Anemia and B12 issues.