New- is this B12 deficiency symptoms or PA?

[Gilbo72]

Hi there

I usually lurk on the Thyroid community, but a recent post there brought up the possibility of B12 deficiency and perhaps PA and I was pointed here.

I have Hashimoto's, and an autoimmune disease attacking my thyroid. Over the last year I noticed that I was starting to get ankle problems from the running, first it was painful tendons, like tendonitis that wouldn’t heal. Then my muscles in my legs started to feel really really tight and painful. No amount of hot baths, massages, tiger balm etc helped. It got worse, my elbows hurt, the muscles in my back and neck were also really tight. To the point where I cut back on the running and now haven’t run for several months. Visited physio who suggested I was slightly hyper-mobile and it could well be thyroid related…, and my hair started to fall out in handfulls again.

So what with the tight muscles, hurty tendons and hairloss, I also had headaches, weird ‘fizzy’ feeling in my head/mouth, insomnia started to creep back. I thought it was about time I privately tested.

My test show

Annoying Symptoms:

•Hairloss

•Really tight muscles and very painful tendons that never seem to heal

•‘Fizzy’ head feeling - Quite often have a fizzing/prickling/pins and needlely thing in my tongue and scalp

•Headaches (could be tight muscles in neck)

•Started to tire easily, but have trouble sleeping

•Horrible big, flabby greyish, scalloped tongue. (I have had this since I got ill)

•Feeling like death and pins and needles in hands and arms when I wake up in morning…

•Sleep disturbances, nocturnal panic attacks.

•Occasional tinnutus (I thought my hearing is starting to go).

•When I am tired I act drunk, can't speak, very forgetful, can't remember words, names, and bump into things.

•Restless legs at night.

•I have had problems with running, gait/pelvic floor.

•Always burping, gassy.

•Chronic constipation.

•A lot of sighing.

•horrible big, flabby, scalloped tongue with blue/grey tinge that has a tremor when I stick it out - which I don't! . (have had this for years - assumed it was thyroid related.)

Does any of this sound like B12 or PA? Does any of it not sound like them?

Thanks

[wedgewood]

Yes , certainly sounds like B12 deficiency , and depending on the cause , coukd be Pernicious Anaemia. PA often appears with thyroid problems -Both are autoimmune conditions , and as such they seldom appear alone . Always difficult to get a diagnosis of PA , as if you test negative, it is very unreliable .

B12 deficiency can be caused by lack of it in the diet e.g. vegan or strict vegetarian diet . ( only found in animal products ). — by supression of stomach acid by PPIs and other medications .

By infestation of fish tapeworms .

The above can be treated orally with B12 tablets or in the case of the fish tape worms , by taking an anti parasitic medication .

P.A. is caused by antibodies that attack the parietal cells in the stomach , eliminating both stomach acid and something called The Intrinsic Factor , both of which are needed to absorb B12 . .

You need to have a blood serum test for your B12 content and the IFA test , although it has such a bad reputation .PA can only be treated with injections of B12 , and they are for life as PA cannot be eliminated.

Also bear in mind that you need a good intake of folate/folic acid .to work with B12 . But don’t supplement with B12 of any kind until you have had a blood test , or the result could be “skewed” .

[Gilbo72 in reply to wedgewood]

I forgot to put in my post my B12 result!! Doh, it was B12 224 (<145- Deficient, 145-250-Insufficient, >550- ideal), does that change anything?

[wedgewood in reply to Gilbo72]

No , not really . Up to 89% of the B12 reading could consist of inactive B12 which your body cannot access. Unfortunately, GPs won’t acknowledge this . But you have those symptoms which must be addressed ASAP.

[Polaris]

Your symptoms certainly describe many of the neurological signs of PA/B12 deficiency and having Hashimoto's certainly puts you at higher risk - 40% of those with thyroid disease go on to develop PA/B12def.

Research also suggests that those who regularly exercise intensively have higher B12 and folate requirements and can be functionally deficient in B12 even with normal or high B12 levels:

ncbi.nlm.nih.gov/pubmed/162...

You could try writing to your GP with latest BMJ research document below, summary only - full document behind a paywall, but GP may be able to access it. This gives an idea of the complexity of diagnosing PA/B12 deficiency with no gold standard test and the importance of treating neurological symptoms without delay. It might be a good idea to take someone close with you to your next appointment for extra support and to ensure this is taken seriously :

bmj.com/content/349/bmj.g52

Two experts on the frontline, Sally Pacholok, "Could it Be B12?", and Dr Joseph Chandy, have been studying vitamin B12 deficiency for years. Both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately.

Dr Chandy describes how low vitamin B12 affects every system — nervous, digestive, cardiovascular, endocrine, ear, nose and throat,’ that it should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.'

‘As we age, the stomach shrinks and produces less of the (hydrochloric) acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (*known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

..........................

The Dutch links on the r/h side of the HU PAS forum also explain about testing, B12 misconceptions and the importance of early and adequate treatment:

stichtingb12tekort.nl/weten...

.................

Another helpful link re. Hashimoto's/PA connection:

frontiersin.org/articles/10...

"Similarly, autoimmune gastritis is a chronic inflammatory disease involving gastric body and fundus, with the progressive reduction and/or disappearance of the native gastric glands that are sometimes replaced by intestinal or pyloric epithelium (metaplasia) (3). The natural history of HT is the progressive reduction of thyroid function till overt hypothyroidism (24) with a rate of progression of 2–4% per year (23), while that of gastric atrophy features the progressive reduction, till disappearance, of parietal cells, leading to reduced or absent acid production (3, 22). These alterations interfere with absorption of essential nutrients leading, at first, to iron-deficient anemia, followed by PA if the self-injurious process involves the IFA (13)"

Very best wishes for a good result Gilbo72

[Polaris in reply to Polaris]

PS Another link that explains things well :

medium.com/@martinecotton/1...

[Gilbo72 in reply to Polaris]

Thanks Polaris thats really interesting. I forgot to put my results in the post!!! Does this change anything? B12 224 (<145- Deficient, 145-250-Insufficient, >550- ideal)

Doh!

[Polaris in reply to Gilbo72]

Not really Gilbo - only confirms deficiency but serum B12 test is flawed for many reasons (Martyn Hooper's latest book, 'What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency') has more detail. In any case, the BMJ latest research above suggests symptoms are paramount, especially if neurological, as there is a limited time before they may become permanent if not treated adequately and without delay as BNF:

bnf.nice.org.uk/drug/hydrox...

*Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

PS * All research states that macrocytic Anaemia is not necessarily present in PA/B12 deficiency.

Good luck 🤞

[Gilbo72 in reply to Polaris]

So should I just troop down to the GP with the private test and list of symptoms and ask for B12 supplementation and a test for PA?. My GP's not particularly an easy man, I try to avoid him. He refused to believe I had a thyroid problem, so now I have this info, I am not really sure what to do with it or how to tactfully approach this with him.!

[Polaris in reply to Gilbo72]

Oh dear, know just how you feel - my GP didn't diagnose my thyroid problem either - luckily, he retired and I asked new GP for thyroid test.

Tracey Witty's B12def. site has suggestions for writing to your surgery - much harder for them to ignore something in writing and would give GP a chance to read the research links ?

Getting a diagnosis is not easy though as the Intrinisic Factor test is only 40% reliable - Martyn Hooper had at least two before testing positive.

b12deficiency.info/b12-writ...

If all else fails, many of us on the forum self inject with B12 from German pharmacists. Personally, I find this less stressful but means there will be no official diagnosis........

[Yachtaction in reply to Gilbo72]

My readings were down at the low 200's for years and i had terrible leg cramps, could only climb 4 steps before they seized up completely. I also had slurred speech, a stutter and sluggish response time when questioned. After a lot of persuading I now get a b12 jab every month. Some of the symptoms remained and the neurological issues were permanent. I have gone a long way to relieving these with 5mg folic acid, 500mg Thyrosine and 50mg of 5HTP all daily. These measures allow me to function normally at work. Good luck.

[Corrieann]

I am like you. I developed thyroid issues first and then started having weird neurological symptoms. My numbers were also boarder line but I am athletic. It took 5 yrs and miss diagnosis to get my PA officially diagnosed. I now have permanent nerve damage. I took another year for me to get some form of my life back and I don’t work out the same. I wish you good luck on your journey.