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-   -   New to Anemia/Low b12 (https://www.healthboards.com/boards/anemia/599336-new-anemia-low-b12.html)

irisheyes39 04-28-2008 10:45 PM

New to Anemia/Low b12
 
Just a little background about me. I am 42 and was diagnosed with MS in 2001, also have had HBP since 22. In the last couple of years I was also diagnosed with uterine fibroid and have extremely heavy periods. In those two years I became increasingly worse in what I thought was MS symptoms. Unbearable fatigue, weight gain, strange cravings, ( I want to smell Pine Sol all day) muscle spasms and twitches from eyes to feet, panic attacks, insomnia, hair loss, i have almost no hair on my legs. Finally a neuro doc decided to test me for B12. It was 220 and my HMG and Hmct and Calcium and Sodium is also low. Not extremely low but under the normal. Today I had my first B12 and havent noticed anything much different really, I am worried about taking the iron supplements due to heartburn etc. Appreciate any thoughts from veterans of this disease. I don't know how long I have had this or if maybe even the MS diagnosis is wrong. Can heavy periods X2 years do all this damage?

japlopper 04-29-2008 08:57 AM

Re: New to Anemia/Low b12
 
I do know someone who was misdiagnosed with MS when she really had low B12 - I can't remember all the details, something about lesions on an MRI that were misinterpreted. At any rate, your B12 is very low, and it will take awhile to get it to where you're feeling better. You might do well to take the sublingual B12 tablets as well. When you're supplementing B12, you need to take a multiple B vitamin to stay in balance, eat lots of potassium (like bananas), and make sure you're folic acid and ferritin is tested as well. These are all things that need to be present to help your body heal.

The twitches are a big symptom of having low B12. When I was at 326, I had terrible twitches. It took awhile to get better - I'd feel better one day, then terrible the next. Have you been tested for pernicious anemia?

Oh, and when my B12 was really low, my blood pressure was higher than normal.

Jill

FLFLOWERGIRL 04-29-2008 09:27 AM

Re: New to Anemia/Low b12
 
irisheyes39--I understand your post completely. I have many if not all of your symptoms. Yes, heavy periods for two years can in fact cause this to happen. Things like these go on for many years until the ferritin is drained and anemia (the last stage of iron stores) sets in. Same with B-12.

Neuro feelings, numbness, tingling and pain are usually related to a B-12 deficiency (or other vitamins and minerals), although I do not have a B-12 def myself. Your B-12 is low, they say under/around 400 CAN present symptoms although docs say 200 is normal. Craving strange non food substances and hair loss are related to iron.

There can be more than one reason for anemia or low numbers or even several. B-12 and Folic Acid usually point to a different type of anemia other than iron deficiency anemia (due to fibroids, heavy bleeding), i.e., PA Pernicious Anemia, Celiac disease (AI disease), gastritis, malabsorption and other things. B-12 can last 2-5 years w/malabsorption going on before levels go down. As far a B-12 is concerned the reasons for the deficiency can be divided into 3 cats. 1. Nutritional def. 2. Malab syndromes 3. Gastro causes. A GI doc would be the one to see for this.

You should have a ferritin test to know where you stand with your iron stores. You can have B-12 def and IDA at the same time. If you cannot tolerate iron supplements there are types that are RX and have some have none/little S/E's. I take Poly iron 150mgs that is a different type of iron for this reason. I have no S/E's. You can ask your doc. You just have to try until you find one that is right for you. But you do have to replace the iron because it makes the blood.

As you mentioned the MS perhaps not being correct. I would think that you have had all the test that would back the diagnosis. I know that the symptoms of anemia are much the same as many other things like thyroid disease, so I would also have that checked if not already. Hope this has helped. FLFLOWERGIRL:)

irisheyes39 04-29-2008 09:43 AM

Re: New to Anemia/Low b12
 
Yes! It helps greatly to have both of your input. I had alot of tests for the MS and getting ready to have new tests and my new neuro seems suspicious of the MS diagnosis. I don't know much about PA so I will have to research it. I do have GI problems of heartburn and probably GERD. The doc gave me a script for Iron FE soy is what it looks like. I definitely do NOT want to take it if it is going to upset my stomach. Maybe I can get him to switch it to yours.

irisheyes39 04-29-2008 09:44 AM

Re: New to Anemia/Low b12
 
Thyroid was checked, I believe the number was 239 or so.

irisheyes39 04-29-2008 09:46 AM

Re: New to Anemia/Low b12
 
Hemoglobun was 11.4

FLFLOWERGIRL 04-29-2008 10:03 AM

Re: New to Anemia/Low b12
 
Hgb of 11.4 is mild anemia but does have symptoms. Thyroid numbers are usually TSH being most common numbers that are ranges like 0.40-4.50 and to 4.20 like that. I don't know what you your number represents? Was your MS DX by a MS Specialist? FLFLOWERGIRL:)

irisheyes39 04-29-2008 10:24 AM

Re: New to Anemia/Low b12
 
My MS was diagnosed fairly quickly and by a specialist in neurology. Fairly large medical center. I dont have the paper in front of me but I think the thyroid panel said ultrasensitive and 2. (something) 39 I believe.

I have been feeling really bad for several months, fatigue and muscle spasms which prompted the new neuro visit. I was pretty upset when I saw the lab results and all the L L L L on about 10 things. Like I said the hemog, hemocrt, calcium, sodium and a bunch of M's and also albumin was low a little. The only thing high was my platelet count which was 425. Which I understand is not much. Strangely I have HBP and you would think the low sodium would help...NOT! Its been worse as previous poster says. I took the B12 shot yesterday and have not slept since. I feel tired but kinda wired and maybe better in some ways but I didn't know the shot would keep me up.

irisheyes39 05-03-2008 08:32 PM

Re: New to Anemia/Low b12
 
Update and need Flowergirl's opinion....
Had the B12 shot a little over week ago. Tried to take Slow FE and couldnt tolerate the stuff with GERD symptoms. Thing is though I have felt better than I have felt in 7 or 8 years. The fog lifted alot but it seems to be coming on a bit now. Does that mean I need a shot ever week?

I have loaded up on red meat too. I had not ate red meat for years on top of everything else and you know what, my BP has dropped through the floor!! I have been to the ER with 200/110 several times in the past and with migraine headaches. For the past 7 years I have taken on average 2 Darvocets a day and/or up to 4g of Tylenol. This week I have taken no Darvocets and less than 1g of Tylenol. My BP has been 108/65 or less every single day. I am floored. I have done nothing different EXCEPT get the b12 shot and eat red meat. I even had to take LESS of my BP med because it was SO LOW>>>>on average I used to run about 145/95, spikes of 160/100. I want to believe this is happening but I am scared it is some kind of weird fluke yet I know it can't possible be. I want to scream and cry at the same time and demand that everyone go get their B12 checked. What do you think?

janeeth 05-04-2008 04:17 AM

Re: New to Anemia/Low b12
 
My BP has steadily increased recently -- readings of 150/95 -- and I've been placed on BP meds. I have lower B12 (338) and my doc prescribed an oral supplement.

Your BP went down with red meat and the B12 injection? That's so encouraging to hear. I'm only 35, and I can't believe I'm having these problems already. Did you try the oral prescription strength B12, or did you go directly to the shot?

Thanks for the info-
Jane

FLFLOWERGIRL 05-04-2008 08:52 AM

Re: New to Anemia/Low b12
 
[QUOTE=irisheyes39;3556206]Update and need Flowergirl's opinion....
Had the B12 shot a little over week ago. Tried to take Slow FE and couldnt tolerate the stuff with GERD symptoms.

[B]The Poly Iron 150 that I take is located within the pharmacy, you have to ask for it. It is not a script. :) There is another that might be right for you which is, Poly Iron "Forte" and It has the B-12 in it too. It also contains Vitamin C so that you don't have to add it in extra for absorption. It is the same thing I take but added B-12. You can try it and ask your doc how much is right for you. I took 300mgs for a year and now take 150 for life I am told??????
[/B]


[B]I have read that oral B-12 IS absorbed because it is a synthetic type of B-12. When people have a B-12 deficiency they do not absorb from food due to whatever reasons. When taking oral or sublingual forms it is absorbed. A lot of people don't think that orally is absorbed because they do not absorb from food, so how could this work. It is because of the type of B-12 and in synthetic form it is absorbed. At least this is what I have read about it, I don't claim to be a medical professional by any means, only in MY home. LOL!
[/B]


Thing is though I have felt better than I have felt in 7 or 8 years. The fog lifted a lot but it seems to be coming on a bit now. Does that mean I need a shot ever week?

[B]Many people get loaded doses until monthly or whatever is prescribed. You should explain to your doc your positive progress and they may prescribe more. I had a friend that did well with the initial shots but her doc declined more frequent B-12 injections. I would take the sublingual along with the shots. I don't know if we said that yet?[/B]

I have loaded up on red meat too. I had not ate red meat for years on top of everything else and you know what, my BP has dropped through the floor!! I have been to the ER with 200/110 several times in the past and with migraine headaches. For the past 7 years I have taken on average 2 Darvocets a day and/or up to 4g of Tylenol.

[B]Wow! That's great news about your BP and I can relate to that too. I was put on BP meds temporarily when I was anemic because of the high heart rate and BP would spike to 165/100 at a doctors visit. I couldn't take it because of my stomach upset, it would burn like aspirin. Anyway, after the anemia resolved so did the high numbers. Could your meds have caused your BP to go up? I know this is different for everyone but perhaps it is the need for iron or B-12. I know if you are eating red meat (3X weekly) that it is a very well absorbed iron and you really make fast progress so this may have helped more than you know. You really need to ask your doc for an iron and get on one that you can tolerate, it is of equal importance as the B-12. When your body is deficient and finally gets what is needed you have a very profound response. I know for years I would try to begin vitamins and never could, but I felt like someone gave me a miracle drug. My family never could understand that I could feel so good on vitamins. Now I have to take a prenatal that is gentle on my stomach and well tolerated. I understand the difference that you are feeling. If you are very deficient in iron I don't think that diet alone will work so you need to follow through with the iron. Glad to hear you are doing so well, it's great to hear ~good news~ posts here. FLFLOWERGIRL:)

[/B][/QUOTE]

irisheyes39 05-04-2008 03:24 PM

Re: New to Anemia/Low b12
 
Thanks so much for your reply, only people who have had to live with this kind of thing understand what it is like to finally see a light at the end of the tunnel. I appreciate all your advice. Have and appt tomorrow for another shot and I will ask him about the iron you take. Thank you!!!

irisheyes39 05-05-2008 07:26 PM

Re: New to Anemia/Low b12
 
Flflowergirl, Need some more advice and encouragement. I got the rx today for Niferex, same thing as you I think. I also got another B12 shot today and feel pretty good, a little tired but still good. I have been pondering something and worrying about taking this iron. If my problem is B12 do I still need the iron? I don't understand that connection to well, but will the B12 shots bring my iron up too? Guess I am a chicken when it comes to taking new weird meds, always afraid of SE.

FLFLOWERGIRL 05-06-2008 12:20 PM

Re: New to Anemia/Low b12
 
[QUOTE=irisheyes39;3558398]Flflowergirl, Need some more advice and encouragement. I got the rx today for Niferex, same thing as you I think. I also got another B12 shot today and feel pretty good, a little tired but still good. I have been pondering something and worrying about taking this iron. If my problem is B12 do I still need the iron?

[B]Iron supplements will correct an iron def. anemia, but will NOT correct PA. B-12 injections are required for that. B-12 will reverse the production of abnormal red blood cells.[/B]

I don't understand that connection to well, but will the B12 shots bring my iron up too?

[B]Only iron through supplements or food sources will bring up your iron levels. Iron stores (Ferritin) reflect the amount of iron stored in the body for later use to make healthy red blood cells. When depleted, iron def. anemia sets in, this is the end stage of the stores.

It is not uncommon to have both IDA and B-12 def. at the same time. What did your doctor tell you that you had?[/B]

Guess I am a chicken when it comes to taking new weird meds, always afraid of SE.

[B]Be brave and just try it:D. How much did your doctor recommend you take? If 2 daily is recommended I would start out with 1 and see how it goes for you. It works well for me and I am ULTRA SENSITIVE! FLFLOWERGIRL:)[/B]

[/QUOTE]

japlopper 05-06-2008 01:21 PM

Re: New to Anemia/Low b12
 
You need to take the iron, because when your body is replenishing the B12 stores, it draws from the ferritin. That's probably why so many people get their B12 numbers in the correct range and still feel tired. You have to keep everything in balance.:)


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