I am new to here. Advice will be welcomed. I recently had private blood tests done, primarily for existing hypothyroidism. I was really very unwell until about 6 months ago when I was prescribed 600mg iron daily. This was because my red blood cells were small, although both haemoglobin and ferritin were within normal. The improvement in my health was quite amazing. Although I am much better than I was I am still fatigued, experiencing muscle and joint pain, brain fog, pins and needles etc. The blood tests I received last week showed the following:
B12 167 (140.00 - 724.00)
Folate 6.34 (2.91 - 50.00)
Vit D 59.1 (50.00-200.00)
Ferritin 103 (13.00-150)
I Spoke to my GP this morning. She said that my Vit b12 was 400 6 months ago and that it couldn't have fallen so much in this period of time. She wont carry out any further test for 3 months. Could anyone comment on this at all? Is this the best approach or should I supplement with B12? I am happy to pay for further private tests if necessary
There is a history of pernicious anaemia in my family
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lindmau
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There is a 40% higher risk of PA/B12def. if PA is in the family and a higher risk if you also have Hashimoto's.
Although many of the symptoms of Hashimoto's overlap, the neurological symptoms you describe, together with low B12, should be treated without delay, to avoid permanent damage. So I don't understand GP's reasoning in waiting three months or denial of the fact that your B12 levels have gone down 🤔
Here are some helpful links as it may be worth putting your case in writing before making another appointment, taking someone close with you for extra support in being taken seriously.
There are more links in the PAS pinned posts, including Dutch results that stress the importance of early and adequate treatment of neurological symptoms:
Latest BMJ research document - summary only, but GP should be able to access full document with details of treatment for neurological symptoms - as in the British National Formula - "every other day until no further improvement".
and this research paper, which shows the progression of Hashimoto's Disease through gastric atrophy affecting the parietal cells, leading to eventual lack of absorption of B12, as well as other essential nutrients.
"Chronic atrophic gastritis is clinically silent in most cases and only a small percentage of patients may complain about dyspeptic symptoms. A well-described clinical feature of thyrogastric syndrome is represented by the presence of an iron-deficient and/or a PA. In fact, it has been demonstrated that an iron-deficient anemia, refractory to oral iron therapy, in patients with HT, may be due to chronic atrophic gastritis (13). The clinical signs of this disease appear after several years of its onset, when the progressive reduction to disappearance of the parietal cells leads to atrophy of the gastric mucosa, impairing the absorption of iron, vitamin B12 (cobalamin), folate, and other nutrients (22). "
Hello lindmau, I am curious as to why your GP said that your B12 couldn't have fallen from 400 to 167 in 6 months especially with a family history of pernicious anemia. The numbers show that it did drop and waiting 3 more months doesn't seem to be very proactive. I would advise you to find a doctor who can take that seriously and investigate further. Maybe a hematologist?
All of the symptoms you mention are symptoms of B12 deficiency along with a host of other ailments but with a B12 of 167 I would venture to say that B12 is the likely cause. How is your diet? Are you vegetarian/vegan?
I would advise you to find a doctor who can correctly diagnose you before you take supplements on your own as supplementing can skew results and prevent you from getting lifelong treatment with B12 injections if you do have PA. If you do have PA, that needs to be documented to prevent future problems.
Two tests that can help diagnose PA are MMA (methylmalonic acid) and homocysteine.
There is a ton of information on here about those tests and hopefully someone will share some links for you soon. Tests for antibodies, namely Intrinsic Factor antibodies and Parietal Cell antibodies do not always confirm a diagnosis of PA.
Do you have any digestive issues? Pernicious anemia/B12 deficiency can cause those as well. My PA was diagnosed by a gastroenterologist. In my case I have autoimmune atrophic gastritis which destroyed parietal cells in my stomach that are needed for the body to utilize B12 from food or oral supplements. Hence, I need B12 injections for life. Important to note is that you can have autoimmune gastritis without any digestive issues, I was just fortunate otherwise my PA may not have been discovered.
Were you diagnosed with iron deficiency anemia? Iron deficiency anemia can make your RBCs smaller (microcytic) and pernicious anemia can make your RBCs larger (macrocytic).
If both iron deficiency anemia and pernicious anemia coexist, the RBC size can actually appear normal on the blood test called MCV (mean corpuscular volume) as they "average out". (I am speaking from my own experience). Your red blood cells may have appeared smaller than normal either because you had only iron deficiency anemia or your iron deficiency was having a greater effect on your average red blood cell size than if you also had pernicious anemia. I hope that makes sense, I'm finding it hard to explain.
Do your test results include MCV and RDW?
Did your doctor test your iron levels? Those numbers would be very helpful if you could share them. Your ferritin level looks very good but that doesn't tell the whole story.
Was your hypothyroidism diagnosed as autoimmune? Pernicious anemia (which is autoimmune) and autoimmune hypothyroidism (Hashimoto's hypothyroidism) can coexist. Both run in my family and I have both.
I hope this helps somewhat, I know there is a lot of reading here and I am sure others will provide more to help you decide how to best approach getting a proper diagnosis.
Very interesting to read your well organised reply as I think I may be in the same boat. I stopped taking supplements so that I could get an unadulterated b12 result, I just have to get my GP to test me soon before I lose all my marbles!
I just can't deal with any more research at the mo so I wondered can you give any further information about destruction of parietal cells ( as opposed to auto-antibody affects) and how that happens? If I can get a handle on it I will discuss it with my GP when I talk to her about a B12 test.
I have had recent parietal cell antibody test (negative) and the intrinsic factor antibody test (GP) , which just said N/A on the result. A negative H.pylori test but that was some years ago, I don't have coeliac's but I have TPO and thyroglobulin anti-bodies and more recently, a Lichen Sclerosus diagnosis, another condition Dr's believe is an auto-immune related.
Thank you so much and to everyone else on this post for the info , what a bunch of marvellous human beings X
your GP is wrong - B12 levels can drop quite dramatically once an absorption problem really starts to bite and you start really using your B12 stores in your liver ... or rather they are released but don't end up in your blood because of the absorption problem.
You are highly symptomatic of B12 deficiency, you have had iron problems - your folate looks a bit on the low side - sounds like you have some sort of absorption problem - PA is the most common absorption problem leading to B12 deficiency - but coeliacs is another possibility - as is h pylori - an infection
Hi lindmau, I have some related blood results but they do not show such drastic differences.
18/8/2017 GP test result 303 range 180-640
31/8/2017 Private test result 253 range 140-724 Blue Horizons
7/01/2018 Private test result 195 range 140-724 Medichecks
So, the first test with my GP would have been affected by the fact that I had been recently supplementing, also possibly the 2nd test but I had not had any supplements for approx 2 weeks at that point. The third test was done after I avoided all supplements for a period of approx 4 months. The private tests included active B12 both of which were well within range, despite this, my memory is shot.
Of course we all have our own complicated factors affecting B12 absorption. Mine are, possibly some genetic factors influencing but all gastric antibodies are normal. I have had bottom of range B12, ferritin and folate for at least 13 years and I have to supplement high dose ( sublinguals) to get b12 up. Post-menapause, my folate and ferritin have improved a lot. So, I think hashimotos antibodies/parietal cell reduction are affecting my B12 levels?
My B12 only went down by 58 over a period of 4mths, compared with yours, 400 in 6 months.
So the other thing I noticed which may be relevant: a big variance for folate in an 11 day period, no supplements:
GP tests 8.7 range 3 - 20
Private test 15 range 8.83 - 60.8
Also with Ferritin, no supplements, time between tests 4 months:
GP test 63 range 20 - 200
Private 91.2 range 13 - 150
I don't know how to account for all these differences in short timescales. I have had a look at analysing where my B12 results fall within the respective ranges from different organisations and that just confused the issue more.
So, having bored the pants off you with this analysis, I can't comment on your results as I am not a health professional but I hope my numbers/experience with different testing organisations, helps shed some light on your results.
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