Sorry for the long post and lack of test results but I’d be grateful for some advice on next steps
My daughter has Hashimotos thyroid disease and is treated with T4 only. I think she probably needs T3 too but it’s proving impossible to get an endo apt, and she’s not keen to self-prescribe
Over the last 6-9 months she has been extremely fatigued, more so than ever, and is constantly needing to nap - not great for a primary school teacher! She’s virtually always yawning.
She suffers from constant throat infections & often has a cough
A lot of these symptoms have been put down to her ‘busy, stressful job’ and working with children but I’ve been pushing her to get various tests from her reluctant GP
Back in September she had various bloods including an MCV which was abnormal with large blood cells. Nothing was followed up but I advised her to take some supplements I was previously advised - namely Nutri vit b12 plus folate with intrinsi factor and Thorne basic B complex, thinking it would be good to get her levels up
She’s had another B12 test (after stopping supplementing for 2w) which shows she is now a third of the way through the range - obviously still low, and it’s the standard rather than Active B12 test
I’m concerned that she could be getting PA but don’t know what to advise/what tests to order privately (her doc basically thinks she’s a time waster as her thyroid results are always in range, although they don’t test T3)
It’s likely that she has a MTHFR defect and DIO2 as I do (going to test that to confirm)
What else should we do to rule out (or in) PA?
Any advice gratefully received. Thanks
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Jacs
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If PA is suspected, it's worth joining and talking to PAS who can offer support and pass on useful information.You do not need a confirmed diagnosis of PA to join PAS.
I urge UK forum members to track down local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board as GPs are likely to refer to this for diagnosis/treatment.
CCGs (Clinical Commissioning Boards) were replaced by ICBs in England in July 2022.
Try online search or submit a FOI (Freedom of Information) request to ICB/Health Board website asking which B12 deficiency guidelines are used locally and asking for a link to or copy of them. Some local guidelines have been posted on this forum.
See UK blog post below if you want to know why I urge UK forum members to find their local guidelines
"she had various bloods including an MCV which was abnormal with large blood cells. Nothing was followed up"
This should have been followed up.
Enlarged red blood cells (macrocytosis) can be associated with B12 deficiency and folate deficiency. There are other causes as well.
Has she got recent results for folate, ferritin (and other iron tests) and Vitamin D?
Forum members often report deficiencies in these as well as B12.
Referrals
I used to put referral requests into a short, polite letter to GP and included evidence to back up the request eg symptoms list, quotes from UK health documents.
It's vital to get adequate treatment for B12 deficiency. Inadequate treatment can increase the risk of developing permanent neurological damage including damage to spinal cord.
PAS article about SACD, sub acute combined degeneration of the spinal cord
I suggest she puts her thyroid results on the Thyroid UK forum on Health Unlocked along with an outline of her story.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some UK forum members turn to treating themselves as a last resort if they cannot manage on NHS treatment.
Some get extra injections from private GPs or beauty salons. Some use high dose oral tablets or drops and some turn to self injection using injectable B12 from Europe.
I had to treat myself when NHS refused to treat me.
Link to article which discusses UK patients who self inject B12
Patient safety, self-injection, and B12 deficiency: a UK cross-sectional survey
Natasha Tyler, Alexander Hodkinson, Naeem Ahlam, Sally Giles, Andrew Zhou and Maria Panagioti
Thanks Sleepybunny for such a comprehensive response. It will take me a while to get through & understand this!
She’s had a coeliac test before which was negative but while she was living with me she was GF and sure she was much better - I’ve advised her to cut gluten out again because I’ve an intolerance to a gluten protein and have been so much better since removing it from my diet.
She’s had various bloods (I don’t have all the results) but they are very sporadic. I’m going to get her a comprehensive set done privately inc folate, ferritin, iron & vit D - Is there an active B12 test you can recommend?
Also is it sensible for her to keep taking the supps with instrinsi, folate & b12 before she has these tests? I know folate can mask a b12 deficiency (not exactly sure how) but also want her to raise her levels asap.
"She’s had a coeliac test before which was negative"
When she had the coeliac test which I assume was the tTG IgA test, was she also tested for IgA deficiency?
People with IgA deficiency need different tests for coeliac disease.
They will get a negative result on tTG IgA test for coeliac disease because their bodies cannot make the antibodies to gluten that it checks for.
Was she told by her doctors to eat plenty of gluten in more than one meal per day for several weeks before her blood was tested?
People with coeliac disease who don't eat enough gluten before their tTG IgA test may get a negative result because there are not enough antibodies to gluten in their blood to register a positive result.
I'm mentioning this because there may still be a chance that she is coeliac if she didn't have a Total IgA test (checks for IgA deficiency) or wasn't eating much gluten before she had the tTG IgA test.
I suggest she checks her test results to see if she had a total IgA test at same time as tTG IgA test.
Gluten is in a surprising amount of products so definitely worth pursuing coeliac diagnosis if it's a possibility in my opinion.
"going to get her a comprehensive set done privately"
Just be aware that NHS doctors may not accept results of private tests but hopefully private tests that show something significant may be enough to nudge GP into ordering the same tests on NHS or to refer her to NHS specialist.
"Also is it sensible for her to keep taking the supps with instrinsi, folate & b12 before she has these tests? "
Taking B12 supplements may affect the results of serum (total) and Active B12 (Holotranscobalamin) tests, also results of MMA and Homocysteine tests if she has those.
See link below about What to do next if B12 deficiency suspected.
I know Intrinsic Factor Antibody test can give a false positive if blood is taken close to having a B12 injection. Doctors would usually leave from two days up to two weeks after a B12 injection before testing IFA.
I'm not sure what effect B12 supplements could have on IFA test.
"I know folate can mask a b12 deficiency (not exactly sure how) but also want her to raise her levels asap."
Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. B12 treatment would be started first.
Both B12 deficiency and folate deficiency can lead to macrocytosis, enlarged red blood cells.
If a person with both deficiencies is just given folate then the body will start to produce normal sized red blood cells again and a doctor may not realise that the person also has B12 deficiency. The neurological effects of B12 deficiency will continue if untreated.
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.
If she has neurological symptoms, I suggest she pushes for a referral to a haematologist and neurologist. See NICE Guidelines B12 deficiency and Folate deficiency link. Look in Management section.
Just to say again that I'm not a health professional just a patient who had a long and difficult route to getting treatment.
If she thinks PA is possible then probably worth her joining and talking to PAS.
Thanks again Sleepybunny I realise docs don’t necessary take private tests into account but my daughter has been complaining for >1 yr and the limited tests, months apart make it difficult to establish a clear picture. At least we would have that and be able to act with knowledge.
I can’t remember exactly what test I had for gluten, i’d have to find my results, it was through a functional doc and possibly called Cyrex Array test - i had so many at the time I can remember, just remember the implications!
I wish I could be more supportive with advice but I am sure others with more knowledge than myself will be able to assist you. It sounds as if your daughter just like mine is unfortunately following in your foot steps. I would have thought it highly probable she has a B12 deficiency.
Out of interest how did you get these genes tested ? I have asked to be seen by a geneticist to be told they dont know of one.
I also have the thyroid issues ( Graves ) but managed to persuade my endocrinologist to prescribe T3 albeit they still only test my TSH which is infuriating. I am due to see the endo next month and will ask him to look into genetic testing. I hope your daughter receives the care she needs.
Thanks Jillymo for taking the time to read and respond. I know only too well how difficult it is to manage Thyroid health (i self medicate with T3 & get referred to Endo because I have suppressed TSH but have already told them I won’t stop as it’s what makes me well; my daughter on the other hand who has all these symptoms has been refused an apt as her bloods are ‘in range’ - it’s infuriating 😡)
I had private testing some years ago via the Regenerus labs, both MTHFR and DIO2 (worth getting both together as one impacts the other) My doc wasn’t interested but it gave me the confidence to start T3 and understand /manage my own health issues.
My daughter being much younger is reluctant to go outside of standard healthcare at the moment. As a primary school teacher she doesn’t earn a fortune either so long term private treatment is not appealing (though she may ultimately come to that conclusion) so I’m trying to help her get the best from the system by reasearching as much as possible and paying for additional tests to get a full picture
My daughter was also refused medication even though she were showing symptoms and now self medicares where as I havn't had the confidence tgo do so myself.
My previous ebdo was seriously over medicating me so my new Dr became concerned and contacted an endo I had never seen let alone met. They reduced my thyroxin by 100mcg sending my body into turmoil, it wasn't even done gradually ! My TSH has now gone from extreme to now being suppressed.
I have done private testing but not looked into MTHFR or DI02 but will be mentioning it to my endo next month. None of them seem to look at the full picture or join up the dots.
Look for motor symptoms - pins and needles in the fingers, or numbness. Difficulty walking - unsteady gait, legs don’t quite belong to her, hitting ‘the wall’ after walking only a little way.
These are quite advanced symptoms, as thyroid issues and MTHFR can mask the early symptoms of PA, or present with the same issues, but the enlarged blood cells, as far as I know, don’t come from either of those sources, so PA is strongly on the cards.
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