Hi, I'm 34 year old female and I've been trying to get to the bottom of my symptoms for nearly 10 years! I originally thought I had some sort of Thyroid disease or something associated with one, but I kept hitting a brick wall with "NHS norms.
" so...
I saved up and paid for private testing...
My recent results from Medicheck shows my Thyroid is all normal (thankfully), but that leaves me wondering what IS going on with me then?
I was diagnosed with Vit D deficiency and Folate deficiency 3 months ago and given supplements. I have yet to get my results back on the retest of Vit D but my Folate is now back up to the top range of normal. However, I don't feel any better at all.
Any thoughts? My full bloods always come back as "normal" I will be going back to the Dr's again to discuss my results (only because I have booked in, not because they wanted to see me) Are there any other tests I should request? I have read on here that anything lower than 500 for B12 with my symptoms should be treated, is that right?
Thanks in advance.
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Aeowin
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Have just read your Post and thread of 3 months ago on TUK. It would seem some things are still the same - low Ferritin. So maybe worth reading through again ... Also post your Thyroid results on TUK - they may not be as normal as you have been told 😊
Your FT4 & FT3 would be better further up the range. As your TSH is also low it is possible you have a Pituitary issue or Secondary Hypothyroidism. Docs say it is rare - but more common than they think - I have read ...
The only result that rings a bell with Me is your ferritin level. Below about 60(I've been told by a doctor) can cause hair loss tiredness ect. If you Google symptoms of low ferritin that may help you . Ask your g.p. write all your symptoms and hand them to the doctor. Also ask about loading doses of vit D and treatment for your symptoms. You have alot of symptoms. I hope you get on okay with getting treatment from your doctor. Also tell them about any supplements (folic acid) you've been taking if applicable as could alter readings . Sounds odd you've not been asked to make an appointment. Take someone with you. ? Book a double appointment?
In UK this would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.
Tested for Coeliac disease?
NICE guidelines below recommend that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with most UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies. I cried when I read this as it was like reading about myself.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
If you think PA is a possibility then may be worth joining and talking to PAS. PAS can offer support and info about PA.
Blog post showing how PAS can support members seeking PA diagnosis.
Lots of useful B12 info in above link plus letter templates including one for letters to GP about being symptomatic for B12 deficiency with normal range B12 result.
Numbness , tingling, brainfog would usually be considered as neurological.
Do you have any other neuro symptoms eg tinnitus, burning sensations, tremors, memory problems, balance problems, word finding difficulties, restless legs etc?
There are many other possible neuro symptoms.
If yes to neuro symptoms, have you been referred to a neurologist?
Untreated or under treated B12 deficiency can lead to neurological damage including spinal problems.
"was diagnosed with Vit D deficiency and Folate deficiency 3 months ago and given supplements."
Is your GP aware that treating folate deficiency without treating a concurrent B12 deficiency can potentially lead to neurological damage?
I think (I'm not medically trained) that this is because one of the signs doctors look for when diagnosing B12 deficiency is enlarged red blood cells (macrocytosis). Macrocytosis can also be linked to folate deficiency. See link about macrocytosis in my post above.
Giving folate supplements to a person with macrocytosis may mean they then produce normal sized red blood cells even though they may have B12 deficiency and therefore they may continue to develop neurological problems due to lack of B12. The effect of the B12 deficiency on red blood cells may be masked by the effect of the folate supplements.
This link mentions the need to treat concurrent B12 deficiency if treating folate deficiency. See Management section in link.
Your B12 has dropped considerably, which suggests deficiency, and ferritin is quite low between 80-100 is optimal. You don't say what your VitD is now? But it was quite low before.
Serum total 25-hydroxy vitamin D level (Xabo0) 105 nmol/L [75 - 250]. I have been to see yet another Dr recently and she is adamant that it's not B12 deficiency...She has however acknowledged that my ferritin is low and given me supplements and is testing me for celiac's. As the NHS doesn't test for active b12 I'm going to pay privately to have it tested once I get my celiac's results back. Dr is leaning towards a diagnosis of ME/Chronic Fatigue Syndrome.....
Personally I wouldn't accept the Dr ruling out B12d, I had all the exact same symptoms as you, my B12 was 358. I fought for a year to get anyone to listen to me and try the B12 shots, I felt so ill, my GP finally gave in after I wrote her a letter, and since having the B12 shots I haven't looked back, everything got better. It took several months before I started feeling well again and each time I had a B12 shot things improved further. Many Drs are ignorant as far as B12 deficiency is concerned! Dr Joseph Chandy was the man who put me on the right track and I can never thank him enough. I had all the tests Active B12, MMA, Homocysteine etc none of them are gold standard and if you have been taking supplements the tests will be skewed anyway so you are wasting your money! My active B12 came back high because I had been supplementing but I still felt so ill, the only test that came back with any concern was Homocysteine which was quite high, everything else was normal so I say treat according to symptoms not numbers!
My Homocysteine is mid range. I haven't taken anything for fear of it skewing any blood tests so no problems there. Unfortunately it's going to be a ruling things out excercise.....
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