Hi everyone, I usually hang out in the Thyroid group because I've got Hashimoto's, but someone suggested I may have pernicious anaemia based on my B12 blood test results, below.
My levels have been high for years. They used to be over 1000 but they've come down now. It is normal for levels to go up and down with PA?
I may be totally barking up the wrong tree because even though the symptoms fit in with how I'm feeling, they could also be attributed to my thyroid problems. I've just ordered a private B12 test.
Thanks so much in advance for any advice!
B12 - 823 ng/L - Range: 197 - 771 ng/L
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Jojozo
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Thanks so much for replying. Is an MMA test something I would need to get done privately? My symptoms do fit, but they also fit with Hashimoto's. I've also been diagnosed with Fibromyalgia, so it's a case of getting to the bottom of what's really causing my symptoms. It's a tricky one!
Gosh, yours was low. I’m glad you got it sorted out. I’ll ask my GP about the test but it’s been high for years and they’ve never been concerned about it. I’ve become more unwell over the past few years so of course, I’m desperately looking for answers!
Hi Jojozo, I have Hashimotos too and am usually on Thyroid UK however, my B12 has dropped in recent months, I am not on supplements but eat what I consider a healthy B12 diet.
Jan total serum B12 333, May 263. I did a private Active B12 test with Medichecks two weeks ago and it came back below range. Mine was 28.6 Ref Range (37.5 - 188). I think it worth doing total serum and active B12.
I have just seen my GP and asked about the MMA test which is what Medichecks suggested but my GP said they don't do that! The GP done a form for full blood count, Folate, total B12, Ferritin and also an Intrisic Factor test as well as an AA test (Autoantibody test)!
I think it depends on the GP or perhaps the area you live in whether they do the MMA test or not. I have various symptoms but not sure if it is related to low B12, PA or Thyroid either. I have a family history of PA as my mother had it.
Your B12 is very high. I can't think why that would be but if your Dr not concerned it must be ok!
Hope you have better luck getting the MMA test from your Dr.
Thanks so much! Mine has been around 1100 in the past and they still haven't worried, which slightly worries me! They just asked if I was supplementing and when I said no they sent me on my way. I'm seeing my GP today, funnily enough, so I'll ask them about the test.
Hi Technoid, yes, very advanced stage of PA or AMAG with hypo- or achlorhydria can cause bile issues. The reason is that properly acidic chime as it enters the duodenum that plays a role in exciting e-cells in the wall of the duodenum (small intestine) that secrete a hormone called CCK. This hormone is the messenger to the gallbladder to "contract" and thus squeeze a bit of bile into the bile duct and the duodenum. As I have achlorhydria my gallbladder was not contracting and completely full of sludge...just thickened bile that had not moved. That condition cured itself over a year after I started taking Betaine HCL before meals. Before we figured I had no gastric acid I had lost 90 pounds.
It is possible to have a normal B12 reading and have P.A
It is very unusual though . Many members of this forum have both conditions . Autoimmune conditions rarely come alone Therr are over 100 autoimmune conditions !!!
GP would not give you a trial of B12 injections , which would let you know if PA was the answer . You coukd get some B12,injections locally ( beauty parlour , hairdresser ) or DIY like we all do. ( B12 ampoujes from German online pharmacies , needles etc from U.K.medical supply company ) You can get information here if you decide to do that .
My B-12 level was above the normal range somewhat. My dr said, try the shots and see how you feel. Thank goodness for this man. I was a different person immediately!
If you are supplementing with B12 then this is normal. But if you are not, there are things that could be wrong if you have high B12 but typically not pernicious anemia. pubmed.ncbi.nlm.nih.gov/146...
Hi, thanks. I'm not supplementing and it's been high for about ten years or so. I'm not sure why, it's very odd. That reading it quite low for me generally.
I have Hashimotos, too. I don’t get treatment (yet). I wanted to look at vitamin levels first.
I did B12 symptom checklist, which suggested I should be worried about B12.. but you’re right symptoms could also have been Hashimotos.
I showed my GP, but he wasn’t worried, because B12 they measured was ‘normal’. All the research and info I could find ( even the NHS notes underneath the test results) said that results of B12 tests have its problems in finding all patients with deficiencies. (Because it doesn’t matter how much B12 is in your blood if it can’t be used by your cells.) having B12 deficiencies is a serious problem, so I decided to pay for a MMA test via medichecks. It came back as positive.
The GP said he’d never heard of it, but requested an MMA test for me. But he couldn’t get one. It might be different in different places. But here, it can only be done with a patient contribution of £85.
Doctor did do an Intrinsic factor and antibodies test which both came back negative.
So the only indication I have had something is wrong is symptoms test ( but possible overlap) and MMA. I have now started taking B12 and B complex supplements and it’s honestly life-changing. I feel so much better.
So that proofs to me there is/ was a deficiency.
I hope that helps you.
Do you have a family history of B12 issues? Also, as has been mentioned before these autoimmune diseases often don’t come on their own, so it’s more likely you have PA if you have Hashimotos.
I did and they all fit, but then they also fit with Hashimoto's. It's very confusing! I don't know about any family history, but it sounds like it's one of those things that's quite tricky to get diagnosed.
B12 levels can come down with thyroid medication, as increased thyroid harmone levels can use up more B12. Have you started/increased your Levo dose? Your B12 levels are fine, so most probably, it has something to do primarily with your thyroid condition, which also interacts with other vitamin and minerals in the body.
I've just had all my bloods done and B12 was the only one that was over, so hopefully it's okay. I've got terrible fatigue, extreme nausea (for over five years. I wake up with it), aching muscles, low mood, pelvic pain (that one is quite random), gut issues and a few other things here and there.
B12 deficiency often leads to nerve damage and your symptoms don't seem to be nerve related. High B12 could be your body not using much B12, which could happen due to low iron (B12 and iron together make blood, so in this case, you will have low Hb), or hypothyroidism is general, as a sluggish body doesn't use as much B12. My guess is that your problems are mostly thyroid related, but I could be wrong and it could be some other mineral/vitamin deficiency.
B12 above 2000 without supplementation points to some other problems (such as acute liver issues, as the liver dumps B12 into the blood), but only a slightly elevated B12 probably means not enough utilisation of B12 by the body.
Usually, the concern over high serum B12 test results, when not supplementing, is it can be indicative of medical issues. I am not up on it, but this article seems to address this topic:
Just wondered what your GP has said about your high B12 levels.
A high B12 level if not supplementing B12 and not having B12 injections can sometimes be a sign of a serious health condition.
If your serum B12 levels are high without injections/supplements then I would expect your GP to at least test liver and kidney function and order full blood count (FBC) tests.
I tend to post a lot of info so may be best to read it over a few days so it's not so overwhelming. Some links may have details that could be upsetting.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
From personal experience, I can say that it's possible to have severe B12 deficiency symptoms with normal range serum B12 results. I've also read that severe deficiency symptoms can occur with serum b12 levels that are above top of the range.
Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.
One thing I urge UK forum members to do if they suspect B12 deficiency/PA is to track down the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them with NICE CKS (Clinical Knowledge Summary) on B12 deficiency and Folate deficiency.
Local B12 deficiency guidelines might be found by an online search or by searching forum posts here. If you can't find them then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are being used locally and for a copy of or link to them.
Two B12 books I found useful
(I think both mention functional B12 deficiency)
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper.
Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society). Book was written a few years ago so some bits may need updating.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Club b12 is a group of researchers and doctors who are looking into B12. Maybe your GP would like to join them. They have regular zoom meetings and have hosted a conference on B12 issues.
Thank you. I am seeing the nurse soon so I'll mention it to her, but my GP doesn't think it's anything to be concerned about. I don't feel well, but maybe it is the Has his. It's so hard to know!
I do not know if it's applicable but worth considering.
When researching initially I found out that serum b12 level is not supposed to decrease over time.
A recent video session with Annie Barr said normal levels of B12 are 500 to 1000, In this case your level is normal. As it has dropped, you may wish to be tested. Link follows:
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