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Old 01-25-2008, 06:51 AM   #1
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B12 deficiency

Hi

Can anyone help?
I would like to ask if anyone has had the same thing that I am having from my GP?
My B12 was tested twice and come back with a reading of 116. They decided on injections for treatment. I had to wait for 4 weeks to get the 1st injection, and it hasn't seemed to have 'kicked' in.
I visited the GP again with 1 of my symptons sore throat, which I have had to varying degrees since May last year - swollen lymph glands - enlarged thyroid- thyroid cysts - got in a state, crying etc as I can't explain how I feel - symptoms seem to go on and on:-
headache(s)
irritability
upset tummy - gurgling
diarrhoea within a short time of eating
post nasal drip
lower back ache spreading into hip and then down into knee
muscle twitching
extremely washed out - although better on some days
sore throat and ears - where they feel like they want to explode with the pressure
boils and absyss when stressed
sore eyes and always bloodshot - especially in the mornings
forgetting things and what objects are called

I asked if the injections could be more frequent than 1 every 3 months which was susggested.
Instead I have been offered anti-depressents as the GP seem to imply that my symptoms are in my head and not the fact of feeling quite poorly sometimes gets me down.
I was also told that although 116 count is low, it isn't really that low as they work at the range of 200 being normal? So therefore the B12 deficiancy is not a problem.
Can anyone help as I am starting to doubt myself and think that it maybe me being daft??!! I know depression can be a sympton of B12 deficiancy - but I don't feel depressed - just fed up with myself - again more so on a bad day!!

Should I question my GP, or be angry with them (2 GP suggested anti depressents) or asked to be referred to a specialist - not sure where to go from here.
Can I help myself? I have honestly been offered no explaination, no possible cause for being deficiant or any suggestion of any further testing.

Help?
Debs

 
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Old 01-25-2008, 09:15 AM   #2
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Re: B12 deficiency

My advice - fight harder for more B12 injections.

I was in the 300 range and felt horrible - I am in the lower % of the population that reacts badly even when in the so called normal range.

It took almost 18 months with injections every two weeks before I felt like myself again. And to this day I still slide in symptoms starting 4 days before the shot.

Put your foot down or find a doctor who understands more about B12 anemia - The longer your low the more chances you have of permanent damage to the nervous system. And the sooner you get the numbers up the sooner you start to feel better.

Good luck.

 
Old 01-25-2008, 10:30 AM   #3
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Re: B12 deficiency

Hi Deb10.
I was going through nearly the exact same thing as you. I was starting to think I was going crazy! Headaches, popping ears, anxiety attacks, general feeling of unwell........the list goes on. Finally I had my B-12 level tested. Mine was at 240........same response from my doctor.......basically it's all in your head. Yeah right! Well, I did a lot of research on B-12 and decided to raise my levels on my own. I have learned that taking a B-12 vitamin in pill form will not help those of us that are deficient, once you have reached a desired level they are good to maintain it. This is because after swallowing it your body now has to absorb it and turn it into a usual form for your body. What they do have (which has worked wonders on me) are B-12 strips that you just put on/under your tongue - just like the breath strips that dissolve in your mouth. Each strip should contain 1000mcg B-12 as Methylcobalamin. This is how well they worked for me;
B-12 level June 2006 - 240
B-12 level June 2007 - 818!!!!
In Canada they sell these at any drugstore........I do hear they are harder to come by in the states though. Do a #@@#($ search - they can be purchased on-line as well. As you can see how much they helped me, I swear by them! The great thiing with B-12 is you cannot take too much because whatever your body doesn't need it will get rid of on it's own. I continue to take these strips daily and will from now on! Good-luck I hope you feel better soon!

 
Old 01-25-2008, 11:31 AM   #4
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Re: B12 deficiency

Hi Deb, I read your post and wanted to write, as I too have thyroid, depression and take B12 shots. I don't understand why your GP would not look further into your thyroid issue, a thryroid condition can contribute to depression but that is because your system is is not working properly. If you are hypo-thyroid that is not treated it will make you feel very tired, low B12 will also make you very tired with all this tired - is there any wonder you may have some depression? What I don't understand is why your Dr diagnosed you with low B12 and a diseased thyroid rather than treating these medical issues he would want to throw you on a quick fix anti-depressant. Seems to be the answer for everything. I would insist on having further tests done,your thyroid by an edrocologist an immune system specialist who knows about the immune system. A working thyroid gland is essential to your well being. I had a GP who everytime I got sick with a cold/flu would up my throid dose, he upped it so high I ended up with Cushings disease and no acting thyroid-not something to ignore or mess with.

As for B12 I take B12 shots- 2000mcg's every 2 weeks or when I begin to feel exhausted and my legs start to feel achy and rubbery. I don't know where you live but I live in Canada and I buy the B12 injectable from behind the counter at the drug store, I inject myself in my hip. When I first started I was taking 2000mcg's twice a week for a month and then 2000mcgs every two weeks. Sometimes I forget but my body reminds me. My reason for B12 is because I don't eat meat and have very low energy and it really does help with me to feel so much better.

I would suggest that you get referral to a specialist by your GP. A GP is a general practioner while a Endrocologist specializes in these issues.

Last edited by ebrena; 01-25-2008 at 11:37 AM. Reason: spelling

 
Old 01-25-2008, 11:52 AM   #5
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Thumbs up Re: B12 deficiency

Hi all
Thank you for all your help and advice. So nice to know that I am not going 'doo-lally' so to speak.

My thyroid function level was normal when tested, seems only to be enlarged due the cysts that have formed there? Again, I can honestly say that I am not convinced!! Was scanned, told "yep you have cysts, but nothing to worry about, goodbye".

I was diagnosed with chronic fatigue syndrome 6 years ago, not treated, signed off work and told that I was neurotic, so have been very wary of doctors ever since. Does anyone think that maybe the B12 deficiancy started then, or even maybe actually have been the cause. Can it go un-detected for that many years without becoming dangerous?

I am in the UK, where the option of buying B12 for injection would be slightly harder, but can try. I have just gone out and bought some B12 liquid 'stuff' that you put under your tongue - will this help?

I have got to say that I am very, very relieved to have found other people, and to have some kind of outlet for my worries. Can being deficiant for so long really cause all this potential damage? If so why are the Dr's not taking it so seriously? I was offered counselling along with anti-depressents. It sounds like a real joke, apart from it being my life that they are joking with.
All the best to you all.
Debs

 
Old 01-25-2008, 12:47 PM   #6
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Re: B12 deficiency

Hi Deb,
I can related to the doctor taking it lightly. I am in the same situation with my GP, she is not taking my low B12 seriously at all. Actually, she never once since 2002 tested me for B12 deficiency..yes, its true. The only test she would do is a CBC blood count and check my ferritin. The call me say I am anemia take some iron pills and that was it. Last week I found out my B12 is at 189 reference range is 150-860 as being normal. When I questioned about the B12 injections she said its nothing to worry about and she was not concerned. So I asked for a copy of the blood work and came right her. I started to take a sublingual B12 pill and will see if it works. One of the ladies on this forum suggested the liquid B12 but I couldnt find it at the time. I am going to look into to seeing a specialist and see what happens from there.Good luck and I hope you can find another doctor who will listen to your concerns. Good doctors are so hard to come by these days.

 
Old 01-25-2008, 12:59 PM   #7
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Re: B12 deficiency

Hi Feeb

That's terrible. Suggest we go for the 'fight' together and try to find new GP's. Other replies say that we need to insist on treatment, so we had better, or we will end up even poorlier (is that a real word?).
Let me know how you do and good luck.

PS - I don't think that I have any other problems with my bloods - just the low B12. Will let you know how the liquid 'stuff' goes.
Take care
Debs

 
Old 01-25-2008, 01:58 PM   #8
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Re: B12 deficiency

deb10 - yes, you can go for years with up and down levels of B12. Personally I was treated for several illnesses for 20 years until finally discovering that I have pernicious anemia (my stomach does not produce instruct factor). In my case the illness got worse over time until my body no longer absorbed the B12 vitamin then I started depleting the levels stored in my liver. In less than six months I went from tired to needing someone with me at all times – barely able to walk and completely unable to drive. Riding in a car with someone else driving was quite difficult as well.

There are several illnesses that prevent absorbing B12 or you could simply be eating a vegetarian diet without supplements causing the drop in this vitamin. Keep on it and watch it closely.

Regarding damage to the body – yes, it is very serious. I was less than 4 months away from carving my own gravestone. B12 to the body is like gas to an automobile – without it the engine stops. B12 is responsible for every cell in your body and highly necessary for neurological functions. I suffered so long that I have permanent ringing in my ears, balance issues, pins and needle feelings in my limbs, electric shocks and pain thru ought my body on a daily basis. 4 days before each shot I have more difficulty controlling the right side of my body and still require more sleep.

 
Old 01-25-2008, 02:24 PM   #9
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Re: B12 deficiency

Oh my that is really scary. I don't know if I have the pernicious anemia, I would assume not, just low in the B12. Not sure if the GP will ever try to find out.

I will watch out for myself, but would be so much more reassured if the medical profession would take this seriously. I am not understanding why they do not? I feel so let down and just sort of thrown away. I feel every time I walk into the surgery, that they all groan "here she comes again".

Were you ever perscribed anti depressents? If so did they help, or is it just something to cover a sypmtom without treating a cause?

I am so glad that you 'made it' - but what a cost for you. If only they had found it much earlier.

Most people, including myself would have just said "you know just go buy some vitamin pill and you will be ok". It's really hard to get your head round it, and for other people to even try to comprehend that you really are exhausted and not just lazy - again as my doctor implied. You see I think that she thought because I am overweight - not massively, Uk size 14, that I don't do anything. I work full-time, have 2 teenagers, and 2 dogs - I really wanted to bop her on her nose - but surprise - didn't have the energy.

That's another question I have. Most people seem to lose weight - I hardly eat due to poor appetite and feeling full, I cannot tolerate dairy or fattening food, and have the 'trots' probably most times after eating. Yet I do not, or cannot lose weight. Does anyone else experience this?

Many thanks - please stay well.
Debs

 
Old 01-28-2008, 03:58 AM   #10
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kty24 HB User
Re: B12 deficiency

I know from experience that getting what you want from doctors is not easy but you really have to push your GPs for more help.

I have found too though that the doctors in England aren't much help.
I felt exhausted for well over a year before being diagnosed as b12 and folic acid deficient. In the last 4 months before being diagnosed as severely anemic I was also having problems breathing and also had problems concentrating and I started forgetting alot. My GP put the breathing problems down to being my asthma and being overweight and my tiredness and memory problems down to stress. She never even thought of doing a blood test. As well as all my symptoms I looked like the undead because I was so pale and she still didn't even consider anemia.

8 months later and I'm still no closer to any reason why I was so ill, the party line from any doctor I see seems to be it must be your diet and your not anemic now so what more do you want.
I have now also developed an iron and zinc deficiency. So the doctors are giving me even more vitamins to take with no sign of any explanation.
No one since May has actually tested my b12 or folate levels despite me asking.
I still get tired very, very quickly and other than being always cold, often feeling sick and my hair falling out (which is doing nothing for my confidence) I fell ok but like you I am trying to keep going on with life as normal but the doctors just won't help, apparently my remaining symptoms are too vague.
Doctors don't understand that we don't want to feel like this, we want to be busy people but our bodies just won't let us. Anyway, my rant is over.

The only thing I can suggest is write a written complaint to your GP, if that doesn't help then change doctors and finally if you can afford it (I know I certainly couldn't) go private.

Also I have found keeping a food diary helpful so that when (which they will) the doctors suggest it could be a dietary problem you can show them your diary and ask them where you can improve things.

Good luck with everything, I hope you fell better soon.

 
Old 01-28-2008, 12:44 PM   #11
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Re: B12 deficiency

Deb - The doctors did attempt to convince me that I was stressed out and that I should go the mental health route. I never did follow their advice and always went well armed to each appointment with a list of symptoms, what I ate, vitamins I took, all lab/test results and a ton of information that I found on the internet. My doctors did tell me that it was my persistence that carried me thru. I love my GP doctor and he is one that was very helpful thru the whole thing. But I will tell you this – since they have not suffered thru it, they do find it hard to believe that it causes so many problems. I was finally able to exercise and walked 4 miles a day for six months. My semi annual maintenance program was up at that point and I was highly interested in what the numbers would weigh in at –Physically I felt that I was losing ground and could not understand why. My labs came back 100 points lower than they were six months prior. I have taken two months off of the exercise (equivalent to how long it would take me to get 100 points back) and I am feeling much better again. I explained this to my doctor and he raised an eyebrow saying “I really can’t believe it makes that much of a difference”. He does appreciate my input and listens to me so he did not argue when I said that I am choosing to stay with 2 week injections. I have clearly proved with the lab report that monthly would not work for me.

Regarding your weight gain question – I gained 60 pounds and depression goes hand in hand with this darn illness. I have managed to lose 25 pounds so far but realize that I must pace myself. Fatigue is still an issue especially around shot time and if I over exert myself physically or mentally I REQUIRE down time to recover. When my numbers dropped (and just like before we knew what was wrong) I couldn’t get enough chocolate – it was not a want but seriously a need.

Good luck and keep fighting. My shoulder is here to lean on if you need it.

 
Old 01-29-2008, 03:25 AM   #12
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Re: B12 deficiency

Hi i dont know if this will make you feel any better but i had all the symptoms you have and more. I found i had low B12 in nov and thought i was going mad with all the symptoms and GPs dont help as they obviously havent researched this problem enough. I started the injections straight away and my symptoms are now getting less and less. I gained 3 stone in weight and have only just started to lose the weight as before my body just wouldnt let me. So please dont despair as this does get better slowley but surely .keep smileing

 
Old 06-16-2008, 10:05 AM   #13
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Re: B12 deficiency

Hi all,

I'm new here and my symptoms sound exactly the same as Deb. I have a cyst on the right lobe of my thyroid (will get another ultrasound in 6 months), and my B12 is in the 220 range. With normal being around 400 and up to about 1100. My intrinsic factor is at 120, with it being considered too low at 120 and down. I'm also exhausted all the time, no matter how much sleep I get. The doctor did a full blood workup of my thyroid hormones and they were all normal. As well as my other vitamins and iron. The only other suspicious result was my triglyceride level. It was above 200 (should be 150), which is high, considering my age group and for the fact that my cholesterol is really great.
Some of my other symptoms include: allergies or at least they seem that way, sore throat (due to post nasal drip), swollen glands in my neck, and red, itchy watery eyes, really awful sinus headaches.
I also get migraines regularly (although that may be from stress)
The one thing that kind of scares me, is the lack of mental acuity that I'm used to having, not that I'm a genius, mind you, but it takes me longer to think things through and to express myself.

My doctor suspects that it's the b12 defiency making me so tired. I'm also extremely irritable and overly sensitive. I was on zoloft for a while, but I really disliked being on that type of med (it didn't seem to help) and weened off. If anyone is considering, starting a med like that, really think it through, because getting off of it was extremely difficult.

I started trying the b12 patch, there is only one supplier of this. I tried it once (dosage is recommended at once per week), but no change yet. I might try again this week. I've also invested in some sublingual tabs; they should also work, we'll see.

I don't think I have pernicious anemia, but my doctor suspects an ulcer. I will be going for an endoscopy soon to check just that.

I'll will check back into this forum as I find some support here.

My regards.

 
Old 06-19-2008, 08:25 PM   #14
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Re: B12 deficiency

Hi everyone with B12 problems!Ya I know how the docyors don't take it seriously...This might help some of you.I suffered for like 4 years about and doctors kept saying they couldn't find a thing wrong with me.SOOOO I went to a hematologist and told her all my lovely symptoms which included severe weakness,cold hands,pins'n needles feeling in my hands and feet.electric shock type feelings,dizziness,"paranoid feelings",trouble breathing,poor appetite,ringing in my ears,sore tongue,off balance and "seizure-type migraines to name a few!Well she said it sounded like I had low B12 and the testcame out at 278(normal range was 200-1100),but she also did a "methylmalonic acid test" which showed the numbers were "sky high" which pointed to a "hidden(occult they call it)B12 deficiency...how do you like that now?I got shots for over a year and then she said I needed to at least have one 3 to 4 times a year.She also said it takes 3 to 5 years to become deficient.I had the radioactive Schilling test,but it showed I had intrinsic factor....crazy,huh?She said it might've been my diet,but she wasn't sure on that one.Well I never kept upm with my shots after that(my insurance changed...I couldn't afford the shots).Anyways 5 years later I start getting ALL the symptoms back,but even worse.My husband has "not so good insurance" so the doctors I see say that I am okay and just have "anxiety"...I got one doctor to check my B12 level and it was 220,so I say "don't I need B12 shots again?"...he says NO...YOUR LEVEL IS IN THE NORMAL RANGE....after a "ton" of doctors(from that louzy insurance company!...haha,but really not funny!)I go see a good neurologist(because at this point I have troyuble walking,swallowing and my hands are ice cold and I have severe parathesis(pins'n neddles feeling)in my fingers and toes,and ALL the other symptoms that I mentioned before.WELL the neurologist calls my doctor and tells him I need those B12 shots every month...THANK YOU!I just don't get it nowadays how so many doctors don't know jack about medical issues......my doctor says that when your B12 level is under 400 you are apt to get a lot of symptoms...why don't all the doctors know this?Well anyways I hope my story will help anyone that is having problems with their B12 AND with getting help from their doctors in treating it. Scout

 
Old 08-21-2008, 03:42 AM   #15
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deb10 HB User
Re: B12 deficiency

Hi all

Just a quick signing in - I have pestered the GP to have injections every 10 weeks. That's all that they will allow. By the end of 7-8 weeks I am tired, have a sore throat again, the 'trots' and a general feeling of 'coming down the 'flu' type thing. Cannot get referred to a specialist, even for my poor memory. Also no blood work taken - even though I suggested that another blood test after my injection and then just before it's due would give a better indication. It's all a nightmare and I don't think that I can argue anymore at the moment. Hopefully will get some 'fight' back soon, especially as my work has now got involved due to my repeated sickness and absence. All good fun!!
Hope you all get better results - see you all and take care.

 
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