I’ve posted my husband’s most recent bloods below. He’s been diagnosed with autoimmune thyroiditis and this blood result was from October before he was medicated at all.
He has serious memory loss. When investigated last year, the psychologist told me to check his B12 levels myself (long story where the hospital had messed up) as she felt it presented more like a B12 deficiency than anything else. I got bloods done and discovered he has TPO antibodies, and that started the route to endocrinology and hypothyroidism. He’s now started medication
However his most distressing symptom is the memory issue. It’s got significantly worse this autumn after what appears to be an annual autoimmune flare up. His latest bloods show low but in range folate. He has previously been vit D deficient and his folate has dropped since January.
A member of the Thyroid community suggested checking in here around the possibility of B12 problems even though his active levels here look fine (on long term over the counter supplements).
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Zmalp
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If you're not in UK, it's helpful to know which country you are in as patterns of treatment for B12 deficiency vary between countries.
Apologies but I can't read the results you posted.
Maybe when you have time, you could type out results for
B12, folate,ferritin (and any other iron results), full blood count (FBC) and Vitamin D if you've got them.
People on this forum often report deficiencies in folate, iron and Vit D as well as B12.
From personal experience I can tell you it's possible to have severe B12 deficiency symptoms with an in range serum (total) B12 result.
UK guidance suggests that people who are symptomatic for B12 deficiency should be treated even if serum (total) B12 is normal range.
I'm going to post a lot of information below so I suggest taking at least a week to sift through it, maybe a bit every day. Some links may have details that could be upsetting.
Are his symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Having an auto immune issue increases the chances of developing other auto immune issues.
PA (Pernicious Anaemia) and Coeliac disease are two auto immune conditions that can lead to B12 deficiency and there are others. Might be worth testing for PA and Coeliac.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
It's vital that in someone with B12 and folate deficiencies that both are treated.
B12 treatment would be started first.
Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines in UK
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
Read blog post below if you want to know why I suggest doing this.
Link above has letter templates covering a variety of situations linked to B12 deficiency.
Some UK forum members as a last resort turn to treating themselves if NHS treatment is not enough. Some get extra injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some turn to self injection using injectable B12 from Europe.
Petition
There is currently a petition to get injectable B12 available over the counter in UK
His symptoms only mirror B12 deficiency where those overlap with Hashimoto’s thyroiditis (hypo phase), except this memory loss. He definitely has Hashimoto’s but we can’t understand why the memory problems are so severe. Other people have much worse blood results but aren’t as sick 🤷♀️ They are checking other associated hormone imbalances too and there is a query over Hashimoto’s encephalopathy but the endocrinologist thinks it’s thyroid related from the GP notes. He hasn’t actually seen the endo as the waiting lists are so long so it’s being done through advice to the GP to speed up treatment and she is v supportive.
He’s had two negative coeliac tests, though neither were done with optimum gluten exposure as he was too sick to complete the gluten challenge so he was diagnosed with non-coeliac gluten intolerance. He’s been gluten free for over 2 years. Gluten does make him really ill, especially in an autoimmune flare up. It appears to make his thyroid swell too.
He has normal MRIs and early onset dementia has been ruled out, as have brain tumours. In fairness to the psychologist, she didn’t know about his thyroid issue as the hospital mistakenly reported it as normal to me. She was convinced it wasn’t psychological though so was looking for a physical cause for the memory and cognitive issues.
His active B12 results seem quite far up the range although still within normal range.
Have you got serum (total) B12 results as well?
Has he had MMA and Homocysteine tests as well as the Active B12 (holotranscobalamin)?
These tests can help to diagnose functional B12 deficiency.
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of B12 deficiency.
You might want to search online for "Functional B12 deficiency".
High serum B12 results when a person is not supplementing with B12 and not having B12 injections needs further investigation as it can sometimes be associated with liver or kidney problems and some blood conditions.
His folate levels appear to be just within normal range.
It's possible for someone to develop symptoms of folate deficiency with a serum folate level that is within normal range.
Is he eating plenty of folate rich foods?
Has his GP suggested taking a folate supplement?
Has his GP reviewed any medication he's on? There are some medicines/drugs that have been associated with low B12 and/or low folate in some studies.
Any concerns about medication should always be discussed with a doctor. Might also be worth talking to a local pharmacist.
Just to repeat from an earlier post.....
B12 treatment should be started before folate treatment in a person with both B12 and folate deficiencies.
Folate deficiency can lead to neuropsychiatric and neurological symptoms.
I have read that these types of symptoms are less common with folate deficiency than with B12 deficiency so it's possible that the GP may not think that folate deficiency could be a potential cause of memory issues.
You may want to search online for "folate deficiency memory loss" or "folate deficiency dementia".
Has he had Full Blood Count tests?
There can sometimes be useful clues on FBC as to whether B12, folate or iron deficiencies are possibilities.
"His symptoms only mirror B12 deficiency where those overlap with Hashimoto’s thyroiditis (hypo phase), except this memory loss"
Have you had a good look at the links to symptoms lists in my other reply?
When I started looking at symptoms lists, I was shocked at how many symptoms I could tick.
If you have time , I'd be interested to know what B12 deficiency symptoms he has got.
With Hashimoto's confirmed, Has the GP considered other auto immune conditions?
Has he had any auto immune screening tests?
Was he tested for PA (Pernicious Anaemia)?
There have been forum members diagnosed with PA whose serum (total) B12 results were within normal range.
Test for PA would usually be a Intrinsic Factor Antibody test (IFA/IFAb). Some laboratories say to leave at least 48 hours and up to 2 weeks after a B12 injection before having IFA test.
There may be a risk of getting a false positive result in IFA test if blood tested close to having a B12 injection.
I don't know if B12 supplements could affect IFA test.
It is possible to get IFA test done privately in UK.
It's quite common for people on this forum to also have thyroid issues.
Iron
I noticed his iron results seem quite far up the range although within normal range.
Is he on iron supplements?
Has he had a full panel of iron tests? See link below.
hi and thanks! Those are the only bloods I have so far as I’d assumed he couldn’t have a deficiency with normal levels until recently and have been focused on trying to get his thyroid sorted.
He doesn’t take an iron supplement other than a basic multivitamin which he’s recently stopped. He eats a lot of folate rich foods so I was shocked it was so low. He’s not on any meds other than levothyroxine and that’s recent. The GP hasn’t reviewed his vitamin levels at all - she wants endocrinology to take charge but at the moment is acting as an intermediary due to waiting lists. She’s more concerned it could be encephalitis and the endo thinks it’s hormone related.
He’s on strict gf and has been, apart from gluten challenges, since we accidentally discovered the problem. He doesn’t have oats at all and I cook from scratch. Barley and malt in any form makes him very ill. A coeliac friend helped me with what to avoid when he first went gf. On the occasion he does get glutened, he’s ill and it lasts about 10 days.
I’ll get more bloods done asap but the postal strikes aren’t helping. Between those and NHS lists, it feels like a constant battle. Thanks for the info on what to test for 😊
Happy you have received both insight and help. There is another member on here that I know has functional b12 deficiency.
Tagging Cherylclaire
I hope that you have gained some insight from his doctors at this point. It is great to get this information, even if it is simply to cross it off the list. But once again there is no danger in having a trial period with b12.
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