Pernicious Anaemia Society

B12 and Hashimoto's

My GP phoned to say that half my blood tests were back, and as well as low B12 (I've started self-injecting and am waiting/hoping for it to kick in) I've got low thyroid function and high cholesterol (8mmol/L). But I don't eat meat and have a pretty healthy diet of fruit and veg, lots of grain, lentils, etc. She talked about a constellation of auto-immune symptoms, said she had to think about what the problem might be, and I wondered about Hashimoto's disease. I can't get an appointment till next Friday so am drumming my fingers waiting.

16 Replies
oldestnewest

Low vitamin B12 can arise as a result of auto immune problems, however, it can also be diet related. B12 is found in meat, fish, dairy and eggs but not generally in plant based food.

It may be worth considering how healthy your diet is as far as B12 is concerned?

1 like
Reply

B12 is only found in animal products.

unwashed vegetables may provide some B12 from the soil content (animal matter)

cereals are often fortified with B12

Pingo - as JanD236 says - if you don't have any animal products in your diet then then it becomes a real possibility that your B12 deficiency is dietary rather than an absorption process and injections may not be necessary

1 like
Reply

I only recovered six months ago after loading doses. When I started to crash again, huge quantities of B12 by mouth did nothing.

Reply

thanks Pingo - if you eat eggs dairy and fish you should be getting B12 from your diet so it would be an absorption problem.

1 like
Reply

I eat lots of dairy and eggs, some fish, but assume I'm not absorbing it.

1 like
Reply

In that case not absorbing B12 is a definite possibility. It will be useful to know what other blood tests have been taken and the fact that your doctor has raised the possibility of auto immune issues gives some hope that they may be on the ball in diagnosing and treating PA, likewise Hashis?

Maybe when all results are available it will be worth posting them in both this and the Thyroid UK website for comment?

3 likes
Reply

Hi Pingo. I'm really impressed that your GP has telephoned you and is now giving some thought to what's going on.

Both B12 deficiency and hypothyroidism can raise homocysteine levels, which in turn causes cholesterol levels to be raised. Treating both will lower homocysteine and help to bring cholesterol down...and it sounds as if your GP will be aware of and thinking of this.

About the constellation of autoimmune symptoms...it's good news that your GP has this on her radar.

People with PA (an autoimmune condition) often (but not always) develop other autoimmune conditions like, for instance, Hashimoto's thyroiditis, rheumatoid arthritis, Sjögren's syndrome, lupus etc.

It sounds very much as if your GP is thinking of all possibilities, including other underlying autoimmune conditions, in an attempt to get to the bottom of your health issues.

It's not really possible to comment further on this without knowing what tests have been undertaken and what the results are. So, just a few 'clues' about where this may be going...

If your GP suspects another underlying autoimmune condition, if she has not already done so, it would be usual to run a full antibody screen. This wil not identify a particular autoimmune condition, but if any of the results are raised, then it would be usual to be referred to a rheumatologist for further investigations and blood tests.

It would also be usual to test the so called inflammatory marker (ESR and CRP). Again, these will not identify a particular inflammatory condition but if raised, will indicate some sort of inflammatory process is taking place and that further investigations are necessary. (If you have lots of gastric/intestinal problems,,your GP may also consider something like IBS or Crohn's (an autoimmune condition), which also cause B12 deficency.

If your GP has already done these tests, she will be able to discuss the results with you and determine whether referral to a rheumatologist is appropriate (rheumatomogists specialise in autoimmune conditions).

Have to say that autoimmune conditions of any sort are very tricky to diagnose and if an underlying autoimmune condition (other then PA) is what your GP suspects, don't be downhearted if you don't get answers as quickly as you'd like. But you will get there...if is is where things are going.

And having said all that, the constellation of autoimmune symptoms your GP refers to may be down to thyroid (Hashimoto's) and PA (which as you know can still be present even if IF antibodies are negative). So certainly not suggesting that you do have an underlying autoimmune condition - just that it's something your GP may want to rule out (or in), in light of all your symptoms.

People with thyroid issues are usually referred to an endocrinologist for further investigation and mor detailed blood tests. Having visited the thyroid forum regularly, I'm aware that endocrinologists are either very good....or very bad on thyroid issues, so,if you are sent down this route, hope you get a good one (it seems the thyroid folks have a similar amount of trouble to those with PA / B12 deficiency when trying to access appropriate treatment - sadly).

As JanD236 says, it would be worth posting all your thyroid result in the Thyroid UK forum here at Health Unlocked. There are some very knowledgable people there and they will be able to help you to interpret your results, and also advise about the treatment you could expect to receive.

Understand about the finger drumming...waiting for results and proposals for further action in terms of diagnosis and treatment is...well...nerve wracking. Especially if you've been ill for a while.

I think that the good news for you is that it sounds like you have a very good GP, who's on the ball...thinking properly about what could be going on...and how best to help you.

Sorry that there's nothing very specific here...just a few pointers that might give you a mental picture of things your GP will be thinking of.

Very best of luck. Let us know how it goes and post again if you need more help.

👍

P.s. Also assuming that your GP will be trying to identify the cause of your B12 deficiency - and if IF antibodies are negative, no other cause is found, and you respond to B12 injections - hope she diagnoses you with antibody negative PA (as per BSCH guidelines). And this must be a first - talking about B12 deficency last - and in a p.s. 😉

4 likes
Reply

Thank you so much, foggyme - this is all fantastically helpful. It's such a steep learning curve --but when the symptoms start to form a coherent pattern it's such a relief. And yes, I lucked out with this GP -- on secondment to my practice for a year and so helpful and keen to listen. I told her I was self injecting and why, and she didn't flinch, just wanted to know where I got my B12. Of course all the waiting is frustrating -- another 10 days of brain fog, another week during which I can't work. I haven't noticed people talking about the financial implications of PA but I'm the main breadwinner of the family and have done no significant work for 9 months. When my last GP said I should wait 10 weeks for another blood test I was furious. This forum is so amazing for helping people like me to take control and get good help. Thank you again.

1 like
Reply

No problem Pingo. Best of luck 👍

1 like
Reply

you may need to give up grains (includes all the grass family) as you may be gluten (and others) intolerant and you may have GI problems .

Reply

I was a vegetarian too, for decades, I was a vegan. Now I cannot walk unassisted. Your situation sounds like mine a year ago, wondering why my "perfect" vegan diet was not making me feel good and deteriorating my health.

The fact is vegetarian foods are good for us but they are not essential. B-12 is an essential vitamin, B-12 is found in animal products. You should seriously consider eating meat, cheese, eggs and seafood - (shellfish have the highest % of B-12).

Pernicious Anemia is a once deadly condition caused by B-12 deficiency, in the 20th century a cure was found, it was B-12. Doctors today tend to dismiss this condition assuming that with all the fortified products (cereals, supplement etc. that are available it couldn't happen to anyone.

Signs of deficiency are nerve pain or tingling, dementia, mental illness, tremor and difficulty walking. It is commonly misdiagnosed as Alzheimer’s disease, depression, diabetic neuropathy, vertigo and mini—strokes. medical journals report that vitamin B12 deficiency occurs in up to 15 percent of the elderly. (some indicate that the number is 15-25% of seniors.

The symptom that convinced me I was deficient was chronic stomach pain and nausea. I used to think constipation was the the cause of my symptoms but eating apples and vegetarian foods for their laxative properties didn't help. When I decided to return to a diet that included meat an other foods high in B-12 I was astonished with the fact that instead of killing me, it made me start to feel better.

Reply

A well-planed vegan diet is very healthy, in fact probably the healthiest there is! I’ve been vegan for 4 years, I take a B12 supplement everyday and my blood tests always come back ok.

1 like
Reply

I always thought the same way as you. Over time my mistake was not supplementing properly. The low B12 condition is tricky though, I simply forgot to pay enough attention to my diet. They say it can take a decade to run yourself out of B12, and years to replenish after you do.

All Vegans should be made aware of this and they are not.

Reply

You're very lucky you can absorb B12 with a supplement. Not everyone can.

Reply

I've been vegetarian for 26 years and never had a problem until recently. I have always eaten plenty of dairy foods (not so much eggs) and still do. I think most vegetarians who are not vegan eat enough B12. Being vegetarian doesn't mean you can't have an absorption problem although obviously doctors should enquire about the patient's diet when they are diagnosed as deficient.

Reply

I agree your're right, my mistake happened over decades though. Vegan diet for several years then almost uncontrollably going back to the conventional American diet. Feeling great then thinking I should be eating vegetarian and going vegan again. This was before I knew about the B12 deficiency and the resulting problems.

1 like
Reply

You may also like...