(This blog post has been updated to today’s date and time. Enjoy!)
In 2009, I wrote an article titled Ten Reasons You May Still Feel Bad, which is still just as applicable today as you are reading this! Nearly every hypothyroid patient can have some of those ten problems, and if so, they need to be discovered and corrected.
And one of those issues was low B12.
B12, also called cobalamin, is a water-soluble vitamin which has a key role in cell metabolism of your entire body, giving you energy, sharpness in your brain, and healthy nervous system functioning.
No one is capable of producing enough B12 on their own. You have to get it in your diet, or supplements. In food, it’s found in most red meats as well as fish and poultry. Liver is especially high! You’ll also find it in eggs and milk products, though it’s less absorbable if the latter has been heated.
And unfortunately, a certain percentage of hypothyroid patients have low levels of this important vitamin.
One main reason that thyroid patients get low is due to the low stomach acid we get from either being undiagnosed or underdosed due to the TSH lab test, or undertreated with T4-only products like Synthroid or levothyroxine.
Hashimotos patients may have inadequate levels due to gluten and the destruction it can cause on the stomach–another reason the majority get off of gluten!
Symptoms of low B12 can vary from person to person, but can include numbness and tingling in your hands or feet, tremors, poor reflexes, tongue soreness, leg pain, or difficulty walking with balance. Psychologically, you may have memory issues, confusion, or depression. Young women may have difficulty getting pregnant due to low B12.
When doing lab work, we saw it needed to be in the upper end of the range.
In other words, several of us with mid-range B12 still saw symptoms related to inadequate levels of B12. Getting it up in the upper quarter took those symptoms away.
To correct inadequate levels of B12 in working with our doctors, we used high oral B12 in pill or liquid versions (methylcobalamin is the recommended form of B12 for most; others use the hydroxy version), or B12 cream, or injections by your doctor (especially if you have pernicious anemia). It’s also recommended to increase your consumption of meat and dairy products, which can be rich in B12.
I highly recommend the book Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, R.N. and Jeffrey Stuart, D.O., who are spearheading B12 awareness.
Have high B12? That can be related to the MTHFR mutation
Turns out that a high percentage of folks can have a mutation of the MTHFR gene, which makes it hard to break down B12. To learn more, read the MTHFR page on STTM.
To read more, go here: https://stopthethyroidmadness.com/b12
Have you found yourself with low B12? Tell us your symptoms, how you treated it, and how long it took to stop the symptoms.
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Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
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49 Responses to “Have you tested your B12? It’s a deficiency thyroid patients need to catch.”
Melissa
My daughter has low b12, but high active b12 at same time. I am confused, I don’t know if she needs more or less, please help! Cant find answer on your site. Thank you in advance.
Abby
Please can some one tell me if vit b12 at 411 is normal? I’m
Suffering hairloss!
Janie Bowthorpe
We can’t say without the range. But this page will help: https://stopthethyroidmadness.com/b12
Naomi
What level should b12 be? Mine is 335. My vitamin d is 45 now but it was 10.
Janie Bowthorpe
Naomi, check the article above. It will help. 🙂
Kitkat
Hi Janie,
I shifted to NDT some month ago. My salivary cortisol showed low, low, low, low. I put myself on HC and am now tapering. Trial and error have taught me that Vit C and Zinc are bad when there is low cortisol production as they both lower cortisol secretion. I have been trying to find out how B12 might affect the same. Is it ok to take B12 when tapering off the HC? Please let me know.
Thanks.
Janie Bowthorpe
Hi Kitkat. I think Vitamin C is more about lowering “high” cortisol, not lowering normal levels. Same with zinc, though perhaps if too much is taken, it might even lower normal levels. Never heard of B12 being a problem with cortisol…
Christina
I recently heard about a new oral prescription alternative to the injections called Eligen B12 that is effective even if you have pernicious anemia. I read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption), which would mean no more shots. Apparently it came out a few months ago. Has anyone tried it??
nidhi goyal
Hello but I got tested I dont have thyroid
Kitkat
nidhi,
Get the 24hour salivary cortisol test. Might shed some light some light.
nidhi goyal
Hello
Sir
Iam 34 old and I have vitd and vitb12 defeciency very low in this I think I am putting on weight too so plz help me wat should I do I do have legpain too
Janie Bowthorpe
Sounds like you are hypothyroid, Nidhi, which can cause the low nutrients. Time to bring them up as well as address potential hypothyroidism! See all about labwork here: https://stopthethyroidmadness.com/recommended-labwork
Jo
I have had hypothyroidism for over 20 years taking Synthroid. Last January I was in and out of the hospital for numbness/tingling in my face, arms, legs. A neurologist said my B-12 was normal at 385 but I insisted that was too low based on my own research. I began taking 1,000 mg of sublingual B-12 daily and felt great! Then blood tests in October showed my level at 1500 and I was again having numbness so my hematologist (I am anemic and get iron transfusion once a month but during these months of takin B-12 my blood and iron levels were in normal range for the first time in eight years), told me to stop taking the B-12. The neurologist, my family dr and everything I’ve read insists you can’t take too much B-12 and it won’t build up in your body but why did mine? I haven’t really felt well since stopping the B-12 and my iron and blood levels are bad again. My last blood test showed my B-12 level at 956 or so after not taking B-12 since mid-October. I’m just so confused.
Janie Bowthorpe
You are probably here: https://stopthethyroidmadness.com/mthfr And patients will strongly tell you that NDT is a far better treatment than Synthroid–https://stopthethyroidmadness.com/t4-only-meds-dont-work Hope that helps!
Rafael
Hi There,
Last week I went to the hospital with my sister because she got neurological problems (language alterations, memory loss, convulsions, Epilepsy). After all the medical tests (blood test and lumbar puncture) they did not find any viral or bacterial infection.
Since my sister has suffered of Hashimoto thiroditis and after reading a lot of articles over the internet, I suggested the doctor to do B12 blood test to eliminate this cause.
My sister was taking 5 days before metformin since she was diagnosed with insuline resistance.
Next week I will have the results of the B12 blood test and then clear this case. In the mean time I am putting B12 shots to my sister.
Greetings from Mexico
helen
I was diagnosed with Hypothyroidism in 2002 after I could not get pregnant and went on 75mg of levothyroxine and now have 2 lovely boys.
I have for years felt that my thyroxine was not working as I felt cold all the time,really tired and no energy or strength at all and my head, well I never remember anything my mind feels foggy all the time and I can’t string a sentance together some days.
I am having treatment for bad skin and as a result of a blood test that showed my hemoglobins levels were low I went to see my GP who requested a blood test and it came back that I was not anemic but my vitamin B12 levels were low, I had a further blood test following a prescription of vicamin B tablets and it now shows I am still low in B 12 and anemic and he mentioned something about some antibodies.
I have now been referred to someone who will be looking at my stomach to see if there are any issues there and I’m just waiting for an appointment.
I found this site and have read the comments and now know I’m not the only one
Janie
Yes, because thyroxine has ended up being quite a lousy treatment for millions, sooner or later, yes, patients treated on this medication (no matter the brand) end up finding themselves with low B12, low iron, low Vitamin D, and/or low cortisol…and worsening problems the longer they stay on it. This is why you will want to learn about natural desiccated thyroid and find a way to be put on that rather than thyroxine, or at the very least, add synthetic T3 to your synthetic T4. https://stopthethyroidmadness.com/natural-thyroid-101
Rohit
I am having hypothyroidism since 1991,and was constantly taking Eltroxine 125 micro g to 150 micro g.No problems till may 2012 , when one fine morning i had attacks of total darkness, I thought may be sugar was low, but after few days again I was having another attack, I got my checkup done, Heart,Stomach, series of blood tests , and one of the blood tests showed mega blast cells, and my Hb had reached 5. I had started getting iron deposition on my face and color started turning black.I was unable to walk quickly, due to breathing problem and fatigue. Even doctors suggested to go for bone marrow test and same was conducted and everything came normal. Later on another test of blood reported depletion of B12 to alarming level, and immediately I was put on B12 injections + Folic acid..3 days a week and within 1 month i started showing improvement, at present I take B12 inj. monthly and125 micro g of Eltroxin + folic acid tab.daily
Janie
Rohit, one of the reasons your B12 may have fallen is due to being on Eltroxin, which patients report has left them hypothyroid, which in turn lowers stomach acid, which leads to lowered levels of many important nutrients. https://stopthethyroidmadness.com/stomach-acid Time to look into getting on Natural Desiccated Thyroid, or at the best least, adding synthetic T3 to your synthetic T4.
Paula
Hi Guys I am researching Vit B12 deficiency at the moment re the problems trying to even get the test and the fact that our GP has it in his that a level of 200 is ok at that is the beginning of the range. I have been righting for the rights of my elderly father age 91 – 3 years ago he was playing tennis (sportsman all his life)
The attitude of any elderly person with problems I have experience with him in two counties is “its your age” – and of course a diagnosis of dementia with no diagnostics. I started reading that there is less dementia and Alzeimers in Japan where they set their standard of Vit B12 at 500
My mother at 84 has been having some memory problems and feeling very tired for the last 2 years she has socalled Hypothyroidism and given Thyroxine and not tested for Vit B12
We have a fundamental problem in that we need to look at all countries levels and tests. I was reading also about a misdiagnosed Hypothyroid in the elderly as we do not even do the test for it in the UK (due to women in the past using this test for diets and so it was banned – extremely helpful for a mass of elderly diagnosed with Dementia.
I am going to do what I can to pull this research together but what needs to be done is to stop GPs getting paid by pharmaceutical companies and to find ways increasing their turnover by linking them to real health shops perhaps as they dont want to give out Vit B12 injections and many other things as it comes out of there budgets and their wages.
I was recently told a GP gets 100,000 a year – £54 per patient on top – 25% extra of that £54 patients with Thyroid problems, Rheumatoid Arthritis, Diabetics and of course Cancer patients. The 25% extra for Dementia patients goes to the surgery itself rather than the individual GP. Then there is the commission on the drugs supplied – how much I ask? depends on the Pharmaceutical company supplying it and mostly cheap drugs. This is what we are up against with getting the right tests – the right information – and the right treatment.
My solution as a Medical Herbalist would be to put pressure on Government to stop the business of keeping people ill for money. To get great health products and great people such who can properly diagnose from mainstream and complementary and form co-operatives – please pass it on if you think it is a good idea. I dont know about you but I have had enough of being patronised when it is clear that we do not have a health system.
alok kumar
three months ago, i was found to have vitamin b-12 as 180… i was given injections and medicines(multi-neuron)..
i was getting cured fast.. and so the doctor advised after one month to have injections (500 mcg) every 15 days and one multi-neuron medicine daily.. for the last 10 days, i could not find multi-neuron medicine, thus i am not taking it… instead i am taking multi-vitamin…the injections are as usual….but i am facing certain problems like…
walking problem
numbness
fainting sometimes
hair loss(earlier also i was having)
wahtz could be the possible reason…? how much time it takes to cure vitamin b-12 deficiency????
is it because i left taking multi-neuron? please suggest.
allena
I’ve been taking b12 gives me energy I rarely had my period I had it very irregular ever since I’ve been take a pill of b12 a day I have gotten my period for the last two months
Baba
Hello all,
today i got diagnosed with Hypothyroidism. This was discovered when i went for the blood tests recommended by my Gastroentergologist. I have a severe gastric problems including stomach bloating, inflammation and abdominal pain since a couple of years.
As per my doctor, my thyroid level(20.6) which is a very high count and is the root cause for all my abdominal/gastric issues. Is this the right evaluation?
Do i need to consult another Gastroenterologist for further evaluation of my gastric/abdominal issues. Further i have a B12 deficiency added to my list. What is the treatment i can opt for B12 deficiency and Hypothyroid.
Thanks in advance
(https://stopthethyroidmadness.com/talk-to-others)
Gary
Hello All,
I was diagnosed with Hypothyroidism at the age of 26. Dont know when it started but mood swings were very common when I was young and always felt depressed. Lack of energy. Fatigue etc!!. Family doc put me on synthroid and brought my thyroid up to level. Later I visited two top endocronologist; they found that I have low testosterone. They gave me gel to apply daily. This all happened when I was 29. No doctor recommended me vitamin tests or pointed towards them. I moved out of country. There I was tested for vitamin D deficiency. Immediately took D3 supplements to bring in level. Still same symtoms. Then 2 months ago I was tested for B12 deficiency “Low 220s”. I started over the counter B12. I feel energetic. Going to Gym. Staying good in mood. Gained confidence. Now planning to go for all the tests of vitamins and Minerals soon. Will see the difference. Then replenish them.
Thanks
Julie
Hi
I feel very nervy tummy going over and not sleeping much keep waking up.I am not feeling the tiredness but i cant be bothered to do any thing no get up and go.
Do you think B12 could help me i am hypothyriod i am on 75 levo?
(From Janie: https://stopthethyroidmadness.com/t4-only-meds-dont-work)
karen altmann
I had a growth under my tongue which led to a diagnosis of b12 deficiency. After months of testibg we gave up trying to find the cause. Fortunately oral top UPS helped. I stopped vying for no reason, my energy picked up and no more stomache aches. Then I was told I had an auto immune and asthma. My poor thyroid has been working overtime so the Dr put me on mess to stop it burning out and the results today were great but curiosity made ne search to see if the thyroid issue is linked. Thanks..
Beth
What are the symptoms of Hypo in children? Also, what is a normal TSH level for a child ages 8-12?
(From Janie: join the NTH Parents of Hypothyroid Children group. Link on this page: https://stopthethyroidmadness.com/talk-to-others)
adrienne
This page has really helped me ALOT…I had my thyroid goiter removed in 2005 and has been on synthroids every since but I do not understand why Im tried all the time, why I have muscle weakness, why am I so depressed, why do I stay bloated and my doc tells me everything is ok but I know its not ok…Im like a different person that I dont know at all… I think this page has helped me out with some of those answers and I will be talking to my doctor ASAP…Thank you guys!!!
(From Janie: now you know why STTM exists. Patients worldwide report that T4 has left them hypothyroid! Get the revised STTM book to take into the doctor’s office with you, with parts highlighted, bookmarked. )
Fran Yule
Should have been diagnosed with thyroidism as early as 13 but wasn’t until 9 years ago. I spent most of that time in and out of psychiatric clinics and wards. Not crazy, just had hyperthyroid. I’m mentioning all the disorders I had during the time I went undiagnosed because it may help someone. Epilepsy, Muscle spasms, panic and anxiety attacks, low concentration levels, bi-polar (cyclothymia) disorder, suicidal ideation and attempts, aching muscles and chronic fatigue, and heart palpitations. Recently I have been experiencing both hypo and hyper thyroid flushes. The symptoms are reminiscent of bi-polar episodes but far less sharp – weepy and sensations of grief, irritability, disinterest, and brain either racing or foggy, bruxism, tension, and outbreaks of irrational anger. These symptoms come and go several times in the course of a day.
Your site has been a great help! I realise that one of my deficiencies is B vitamin. And I will find a doctor who listens, thinks and then acts.
Deirdre
You wonder who are the Doctors re thyroid illness! NO, Thyroid patients KNOW who are the knowledgeable, questing people in this scenario!!
I’ve NEVER in 25 years of the first symptom/Hypothyroid, in 1986 (diagnosed in Nov., 2001,despite being under Medical “care” all those years), been advised by Doctors,Endocrinologists, Specialist Physician & a Dietitian in 2010 who said there is NO THyroid Diet & gave me a print out from the Mayo CLinic to verify her statement, a need for Thyroid Patients to take Vitamins for Hypothyroidism, nor about a tendency to Gluten sensivity, actually nothing much at all to assist. the latest when I asked about the best thing to do re Gluten intolerance was “don’t eat wheat” nothing else, and this 40 year old GP has a wife with Graves – poor her! Thank you once again for this site Janie and patients who contribute, I shall now go and self-treat (only thing that works re Hypo illness) and advise my 2 sons who are in the same situation, to follow up on B12 deficiency. Started a high quality Vit B Complex Vitamins in Sept., 2010 and the difference was notable – should have been taking them 24 years ago. This made me aware that I needed to do extensive research on the interactions of and be very knowlegeable about Nutrition as the Dietitian is not.
Carol Prince
I have taken Thyroid medication now for nearly 20 years here in Australia. It has been a merrygo ride of different problems. I found I needed Multi Bs.
But I also found I was sensitive to firstly Dairy then having problems with fatty acids. GPs took no notice although I keep complaining.
Finally I found when I took a new dose of multi Bs I was feeling better, so I looked at the content of the tablets and in it was Biotin. What was that I thought.
I researched it, the answer came back that it was taken for hair loss and nail improvement, that did not apply to me. I researched further and found there is a medical situation where the body is depleted of Biotin. This is caused either by taking too much egg whites or having too many anti biotics! Bingo I thought.
So I went to the health shop and took 150mg of Biotin for a couple of weeks, then I sat myself down and ate a small packet of potato crisps, which I normally would get a reaction to. Namely runs to the toilet. I had not reaction from the greasy crisps…..so I have been taking Biotin a couple of times a week to help me eat fatty acids, also after I have had a dose of anti biotics due to infections.
I have been taking Biotin supplements and b supplements now for 5 years and feel so much better for it.
Biotin used to be part of the B family now it is a vitamen in its own right.
My first research on my own body was 5 years ago and even the gastro specialist when I mentioned Biotin admitted they had not researched it, as back then I had a hard time even on the net trying to find an answer, a recent question I put to the net and I came back with a heap of information on Biotin. I personally think the body builders taking white of egg will be having problems in years to come. But for myself with my Thyroid issues I have a new issue Osteopenia, which I do not need. I think this has been caused by the lack of absorbsion of nutrients going straight through my body thanks to the lack of the right amount of Biotin.
I hope this helps someone or some Medical expert reads this and realizes the importants of further research on Biotin.
Sara Donoval
I had a small goitre in 2001, went to see my GP who ordered my thyroid blood test. This came back within the normal range. Later that year I miscarried our first baby. At the end of 2002 I was expecting again and my goitre grew from medium to extra large size. My midwife referred me to an endocrinologist in Winchester. Unfortunately, I was only seen by his medical student who touched my neck and said it was ok. The TSH test however came back saying that I was hypothyroid. I was then put on Thyroxine and our first baby boy was born in 2003. My goitre looked enormous but I wasn’t concerned about it, just little embarrased and started wearing turtle neck tops. In March 2005 I was forced by my mum to see an endocrinologist privately. The needle test suggested 99% papillary thyroid cancer. I had a total thyroidectomy in May and RAI in November. After that I was put on 175 mcg Thyroxine. In 2006 I was expecting our second baby and was very worried about the effects of the RAI on our unborn baby. My oncologist reassured us that it was safe to continue with the pregnancy. We had a beautiful baby boy born in the summer 2007. In 2008 I was suffering with blurred vision for about 6 months as well as tingling in my arms and legs and I was having headaches. I felt like I was in somebody elses body. I couldn’t recognise myself and had real difficulties to just keep going. In 2009 I was diagnosed with MS. We moved house in 2010 and I asked my GP to refer me to a neurologist in our new area to keep an eye on my MS. My new neurologist has ordered some blood tests and as a result found out that I was wrongly diagnosed with MS. In reality I was B12 defficient. I’ve had my B12 injections and I feel much better but I always feel cold and my slow body and mind motion hasn’t changed that much. After so many years of struggling on T4, I have just found out about the natural thyroid. How do I go about testing it out for myself??? I want and need my life back for me and my children. I have also just started worrying about my younger son. He is a beautiful little 4 years old now and he is bright and happy. He is however clinically showing some signs of hypothyroidism e.g. dry skin since birth, constipation, catches infections very easily, sleeps longer than anybody else in our family and gets emotionally very easily upset. I am hoping to get him checked soon but remembering my ‘normal’ blood test results in 2001 makes me think that we won’t get very far with getting help. I guess I just have to be forceful with our doctors?
sophia milanisa
Wow, you’ve been through a lot ! you didn’t mention how frequently you have B12 injections. I’ve been on 3x a week dose and most of the time, I just feel so strong and normal. from time to time though I still feel the symptoms. One thing i noticed is, days of bad diet – sugar and fats – seem to bring on an onset of symptoms. have you tried having your kidneys checked ? anyway, happy to hear about your beautiful kids.
Rick
I have been treated for hypothyroidism for 10 years now. At the time preceding my diagnosis I was having fatigue, weight gain, skin changes and sleep apnea. I had 3 physical exams in the month preceding my diagnosis and no one ever suggested a thyroid study (I was in graduate school, had small children, and worked nearly full time in a busy ER, so of course I was fatigued). The only reason I had one is that it was required for sleep studies! Of course my TSH was too high to be quantified. A recent ultrasound indicated my thyroid gland to be absent, apparently consumed as a result of Hashimoto’s. Later I went to my doctor for symptoms that I described as “male menopause”. He told me that he didn’t believe in that but was willing to run a testosterone test, which led to the discovery of a pituitary adenoma, which suppressed testosterone secretion. Most recently, last fall I began to feel increasingly fatigued and depressed. Since these feelings have been present much of my adult life, I merely coped with them. By December I was having thoughts of suicide, and when a numbness started in my feet and began going up my legs, I knew I had to find out what the problem was. My doctor did a neuro exam and found that while my legs were not completely numb, I had lost all vibratory sensation in my legs. Since my symptoms now were resembling MS, I was referred to a very knowlegable neurologist. After the initial exam, I was sent out to get labs drawn, one of which was a B12 level. This came back at a level which was too far below the reference range to quantify. So now I am taking vitamin B12 injections and the numbness has receded from my hands and has gradually been receding down my legs, but is not yet gone. It saddens my to think how much of my time was wasted just feeling depressed. I can’t really blame the general practitioners whom I’ve seen as they have been generally helpful and the total sum of knowledge of the human body is too vast for any one person to master it all. However, I do fault the endocrinologists that I’ve seen, none of whom ever gave my any information about the risk of low B12 levels, associated with hypothyroidism.
Erik
This is a great article. I can tell you through experience from 15 to 21 I was the fat kid, girls would literally walk away from me. At 21 I started drinking more water and once again started taking my vitamins. I can tell you, I am now a pretty thin and attractive guy finally at 22. I lost about 50 pounds. I am enjoying my life, I am no longer depressed and I am full of energy, that energy I miss from my pre 15 days. I know I was vitamin deficient. Keep spreading the word.
Karen
Linda
Did you know that according to an article on Medscape “Long-Term Metformin Treatment Linked to Vitamin B12 Deficiency”?
Linda Dabulewicz
Thanks so much for the vindication. I have been in pain and misery for many years. I have been hypothyroid or so I thought for 17 years. 8 months ago I was diagnosed with Type II Diabetes and put on Metformin since then my health seemed to go down Hill and I felt like I was going to kick the bucket very soon. Dr said everything was normal and recommended a psychiatrist. I may be goofy but I wasn’t inventing my pain. My body temp was running 96.8 in the summer. My hands feet and legs were burning and tingling, I was too weak to climb stairs I bruised easily.I had IBS and chest pain When I looked up at a flock of geese flying overhead I fell down. I was afraid to drive at night because I couldn’t tell where I was. My family finished my sentences because I forgot what I was talking about. I felt dead, period exclamation point. MY grandmother had had pernicious anemia but my misery was of my own imagining? I told my doctor to test me for B12 . He humored me and threw in a Vitamin D test too. He consceeded and said my Vitamin D was low and told me to take 1,000 units of D but said my B12 was ok. I had already begun to take both D3 (2,500 units) and B12( 1000mcg) 4 days before the blood test was done. Here are my numbers:
B12 373
vit D 27.1
Obviously , I am deficient in both vitamins. I feel so much better already. I am warmer, my bruises are fading away, my blood sugar is almost normal , I am sleeping better and only a few toes are still tingling . I haven’t had any joint pain my body temp is up to 97.8 on average now and I feel happy. I haven’t had any diarrhea or chest pain in 5 days All is not perfect . I am still dizzy when I look at the sky and I have trouble walking in the dark . I lose my balance and I still forget the word I want to say. I hope it isn’t perminent. The G>D> doctor still wants me to see a Psychiatrist and my Thyroid test has me flummuxed.
My TSH is 1.58 and my T4 is 1.0 what is that all about???
Linda
PS I asked the doctor to mail me all my blood work for the last 5 years. I would like to see where things are going since I doubt very much he ever compared notes over the years.
Sara R
I’ve had Hypothyroidism for 20 years, and had never heard any connection to a B12 deficiency until now. I am mad because I am reading several places that anyone with hypo should have their B12 levels checked on a regular basis. I was just diagnosed with a deficiency, and I have been complaining for years of fatigue, and achy legs, and not once did my DR ever even suggest checking my B12. I remember asking once to have my potassium checked because I was having muscle weakness, my arms would hurt to fix my hair or fold clothes. Well it came back fine. Everytime I complain of symptoms they would recheck my thyroid and it usually came back “within the normal range”. Now I am wondering how long my B12 has been declining. It wasn’t until I was having the numbness, tingling, and burning sensations that they checked it.
bric
I had my thyroid removed two years ago due to Graves Disease. I had a large goiter. Three days after surgery I got Tetni from low magnesium and calcium levels.I have also had the pain,tingling, weakness, ect. I requested that my Dr test my blood for vitamin B12 levels. I’ve had eye sight deterioration and coordination problems but the pain has been unreal. The pain is surging threw my body sometimes I can’t even get out of bed. Thank you for writing about your experience, it’s comforting to know I might be getting closer to an answer! I am taking Elavil which is a antidepressant also used to help with nerve issues, I noticed a small difference in one day with the Elavil. I also went and bought a bottle of liquid vitamin B12 to take while I’m waiting for my test results. I’ve noticed a huge difference in one day of taking the vitamin B12. Alot of the tingling and numbness has already gone down. I am only thirty years old and I have degenerative disc disease and a bulging disc so I think it’s been a confusing situation for the Dr’s that are trying to help me. I didn’t really get scared until two days ago, that’s when the numbness spread into my arms, finger tips, neck, and all over my face. That’s when I started my own online search.
sanjay kalamkar
iam also a hypothyroid put on levothyroxine but stll having generalised weakness iam goeing on b12 from today
Patty B
I have been treated for hypothyroidism since 1981. In March of 2010 I began to have numbness in my feet and hands, severe leg pain, loss of strength in my legs, and tingling and twitching in my legs. After nerve tests, MRIs, and many blood tests the only abnormality was a low B12 of 190. My neurologist and PCP would not give me injections b/c they said the value was only borderline low. My endocrinologist agreed. I knew my symptoms were caused by a low B12 b/c I no longer ate red meat, had very little dairy in my diet, took large amounts of antacids, and was hypothyroid. I finally found a neurologist who said it was a “no brainer”–my symptoms were caused by low B12 and he started me on injections. It took almost a month before I felt better but now am back at work, no longer depressed, and am feeling much better. I am in physical therapy to regain the strength in my arms and legs. I did a lot of research and knew my own body and would not give up until I found a doctor who understood B12. Don’t give up, keep educating yourself and find a doctor who is educated in B12. He told me that most doctors in the U.S. are a decade behind in understanding what B12 deficiency can do and what a normal B12 value is. Other countries are way ahead of us on this topic. Stay strong–you know your own body best.
Rafael
Hi Patty,
I just put a comment below and after reading your post, I believe this is exactly that happened to my sister.
I do not have yet the result, but I am more than sure that my sister must have her B12 levels a lot lower than 200 mcg.
Thanks for sharing!
Lisa
I was dx’d w/hypo when I was sent to a locked psych-ward for suicidal ideations. I was tested for the 1st time and found to have an insanely low THS. Now on synthroid. for about 2 years, still feeling like crap most of the time. I read in a book about hypo re: b-12. I asked my Dr. for a shot and this was DENIED as she patted me on the top of the head and told me I was tired from depression. hmmmm. Went this week to a doctor I was seeing exclusively for a work comp injury,(tho he knows my hypo dx). He gave me a b-12 shot, and I am now really p.o’d. I feel so much better!!!! All those symptoms improving drastically. Haven’t needed my daily hour-long nap since 🙂 Now I will look on-line to find reputable outlet for b-12, b/c I am not going back to that needless Suffering! Keep up the good work. I am sending a printout of the info I am finding to send to my “clinic” as they have never heard of such a thing. Paging Dr. Bozo?
Victoria
I had mine tested and it was over range. 🙂 My D and ferritin are problems that my doc and I are working on, but plenty of B-12 – must be all the cottage cheese I eat, which I found out is very high in B-12. 🙂
Mel77
Also forgot to mention that I am now on Dessicated Pig Thyroid or Armour – what a difference, the first time in my life I have not had cold hands/feet!
Mel77
This is very interesting to me. I have had underactive thyroid for a long time, Eutrosig or Oroxine made me very ill for 5 and 1/2 years. In that time I saw 3 Endocrinologists, none of them believed the tablets were making me ill. I found a naturopath and went straight off them. I started with a new endocrinoligist about 18 months later and had the same problem with Eutrosig again. Now I am seeing a new doctor who specialises in nutritional medicine. He has diagnosed me with Hashimoto’s Disease and PCOS (the last endocrinologist told me I wasn’t symptomatic enough to be tested for it!) He has also found that I had virtually no vitamin B or Iron in my blood as well. He has since put me on an iron drip and sublingual vitamin B complex – I love the vitamin B complex, look forward to it every day and a lot of my sweet cravings have subsided. It all seems strange to me how the many endocrinoligists I saw previously did not bother to test for hashimoto’s, PCOS, iron levels and vitamin B!
Claudia
I realise this post is old but can you please advise what symptoms your medication gave you? I believe I have just become allergic to them all and would love some encouragement
Sara
There is some great info on pernicious anemia, which is mostly relevant to other forms of B12 deficiency, at the Pernicious Anemia Society website: http://www.pernicious-anaemia-society.org/ We who have pernicious anemia sometimes have as much trouble getting diagnosed and treated as anyone with hypothyroidism! You could be forgiven for thinking that vitamin B12 was a highly controversial experimental drug that cost $10,000 a dose the way some doctors carry on if you want a B12 injection more than once every 12 weeks!
One interesting symptom of B12 deficiency is “the sighs”. “Breathlessness” doesn’t really cover it, it’s more like you feel the need to sigh a lot because you can’t take in enough breath – sometimes it can be mistaken for asthma but there’s not usually wheezing associated with it.
I got diagnosed only because I insisted to my doctor that I wanted more tests than just B12. I read on a thyroid support forum that you should get the B12 carrier protein tested too, which is “Transcobalamin II” or sometimes “holotranscobalamin”. You also need to get a full blood count, folate, and ferritin tested. If you suspect pernicious anemia, get tested for parietal call antibodies and intrinsic factor antibodies. I asked for those and it turned out ny serum B12 was considered “normal” (hah) but my transcobalamin II was quite deficient and I tested positive for antibodies.
To treat, you usually need a “loading dose” of B12 injections, my then doctor actually argued with me that I didn’t need that so I went elsewhere and lucky me found a doctor who agreed that loading doses are a good start. There are various regimens, but usually you get a fair few hydroxycobalamin injections in the first month, then go to one per week or month, depending on what you need. Some people can go a bit longer. If you have pernicious anemia you can only absorb around 1% of all the B12 you eat, but consuming megadoses of 1000-5000mcg can help keep you “topped up” between injections. Sublinguals help some people but I have read that it can be better to take the oral megadoses as they help keep storing B12 in your liver, where sublinguals send B12 straight to your bloodstream.
Anyway I highly recommend checking out the Pernicious Anemia Society site and forums, there is lots to learn.
ibeji
Dear Janie,
thanks a lot for your calling attention to this important issue!
However, not only does hypothyroidism frequently lead to digestive issues, but these digestive issues may also make the intestine more vulnerable to potentially harmful foods.
Many people with hypothyroidism develop an increased sensitivity towards gluten (which causes inflammation of the intestine, characterized by bloating and sometimes diarrhea), which further exacerbates the absorption problems of, among other things, vitamin B12.
Furthermore, no mammal is prepared to consume dairy products during adulthood. Dairy products therefore especially harm an already weakened intestine (and it is not only the lactose in the milk which causes the problems, the other ingredients from the milk do as well!).
Many good doctors (the ones who prescribe Armour and also treat weak adrenals, among other things) therefore advise hypothyroid patients to avoid gluten and dairy products (and sweets), since all of these will increase fermentation in and inflammation of the intestine, which causes intestinal atrophy and leads to malabsorption of all nutrients, creating a bunch of additional problems in its wake.
Note that bread made from sprouted grains is an exception to the rule (of avoiding gluten) and can be consumed with moderation (as everything should), since sprouted grains have the same nutritional value as vegetables.