Hi,I've been pointed to the PAS forum by the good members of the HU thyroid community. I'm a 42 year old male and have struggled with hashimotos hypothyroidism since 2018, with the last 2 1/2 years been very challenging.
I'm sure you all know that the symptoms of being hypo and low B12/PA all cross over which can really make a confusing picture. My worst symptoms atm are brain fog, weakness, tinnitus (which comes and goes) and some tiredness. The brain fog has been persistently bad since day 1.
I've been lucky and I have been seeing private practitioners for most of my treatment. I'm currently on T3/T4 combo with optimal blood test results, but I do have low cortisol as shown in 9am blood draw and saliva cortisol test.
I'm beginning to wonder if low B12/PA is preventing me from recovering my health.
Last year I went onto B12 injections administered by a local private clinic. I had 7 jabs last year and my next one due early Feb. I also take a B complex daily.
I had my intrinsic factor tested last year and it came back negative, but I've heard that means nothing. I had an FBC Dec 20th last year and my B12 checked.
Can anyone recommend a list of blood tests I can request from my GP? I've down loaded the list on the PAS Web site.
Is it wise to postpone my next b12 jab until any other tests have been done?
How long before testing should I stop taking any B12 supplements?
Any other tips and advice would be gratefully appreciated before I start this PA journey....
Written by
joey82
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First of all you know that you have an autoimmune condition - namely Hashimoto’s . We do know that autoimmune conditions rarely come alone. So you are a candidate for another autoimmune condition ( I’d rather use the word “ condition” than disease ! ) This could well be Pernicious Anaemia, given the symptoms you mention . Also , having read the messages daily on this forum since 2014 , I can see that having those 2 conditions together is very common .
Perncious Anaemia ( also known as as autoimmune Gastritis ) is the most common reason for Vitamin B12 deficiency
A vegan or very strict vegetarian diet is another.
Certain medications can impact B12 absorbtion. ( look them up )
Certain gastrointestinal operations ( look them up )
Infestation with fish tape worm ( different to the usual tape worm )
If you can eliminate 2-5 you very likely have P.A.
The intrinsic factor antibody test is negative in about 50 % of P.A. Cases.
I will be back to your question later , but I have to dash off now .
I should have numbered those reasons I gave for Vitamin B12 deficiency . I listed them Number I was P.A. the ones following. we’re 2-5 , which if you can eliminate as reasons , would point to you having P.A. Sorry about that misunderstanding. Just got back home .
Sorry, that still doesn't make much sense to me. Surely if you can eliminate them reasons, or some of them, it would point to you not having PA....
I don't have a B12 defeincy, and never have in the last 5 years of blood tests. But I'm lead to believe that it's a difficult disease to identify and I'm looking to rule PA out (as best as I can anyway) as I've struggled to regain my health from hypothyroidism.
I've come here for advice, and without knowing me, my clinical picture, any of my test results you've decided I've probably got PA/B12 issues.
Wedgewood’s reply listed 5 reasons why a B12 deficiency might occur. If 4 of them do not apply (ie reasons 2 to 5 in the reply) then it is likely that PA is the reason for the B12 deficiency. That seems clear to me.
You stated that you have been having B12 injections and that you are wondering if low B12/PA is causing your health issues. I’m confused as to why you think it is wedgewood that has decided you have PA/B12 issues when it is exactly what you have stated yourself?
I realise my reply doesn’t provide you with any extra help for which I apologise; however, I felt the need to post this as I felt you were somewhat rude in your reply to wedgewood who was after all only trying to help you.
In what way did wedgewood try to help? I asked for advice around B12 supplements and taking them around testing. All I got told is that I've got PA with absolutely no evidence to back this up apart from a few messages on a forum. Just what someone who is very stressed and worried wants to hear.
I used the term B12 loosely, as in maybe I am not getting enough B12 to the parts of the body that matter despite seeing good serum level results.
"That seems clear to me"..... nice attitude.
You're right, it doesn't so please keep your replies to yourself.
I’m sorry if you feel misled . That was never intended . I responded to you quickly ,just before I had to go out . I know how awful it is if you have to wait ages for a reply . I intended to answer more fully later with more information. But I think it better that others do that now .
Methylmalonic acid and homocysteine tests may be what you are looking for. Not recommending you get the test from this site - just that it gives a good description of what they cover (too early for my poor brain).
"If your MMA and homocysteine levels are increased and your vitamin B12 level is mildly decreased, then an early or mild B12 deficiency may be present. This may indicate a decrease in your available B12 at the tissue level. If only your homocysteine level is elevated and not MMA, then you may have a folate deficiency."
You need to drop (as well as the attitude) the B12 injections, as your figures above present as comfortably in range.
Then get retested after, say, one month, and see if, without the injections, your B12 figure drops to below, or near, the bottom of the range.
This will indicate if there is something here to be investigated or not.
However, you don’t mention if the B12 jabs have helped or not, and from your continuing symptoms, I’d deduce not, so I fear that B12 may not be the issue.
I see from your posting that you recognise ‘good members’ in the Thyroid community. Let me assure you that Wedgwood is one of the principal ‘good members’ in this Community, and you do her a great disservice by not recognising that, and her attempts to help.
Maybe the brain fog is clouding your judgement here?
Ok thank you, my last jab was 9th October. How long should I drop the B-complex for before testing? a month as well?
I don't think the B12 jabs done anything.
I had a GP appt this morning and I requested all of the PA related blood tests. They don't provide these at front line care and would need a referral to haematology which they said was unlikely as none of the FBC markers showed anything untoward.
Hi Joey, thought a video re 12 posted today by another member may be of interest as it's very informative. Just read you haven't felt much benefit from injections and of course this may not be your route to getting back to good health but nevertheless worth exploring.
It wasn't clear whether you initially had loading doses but your current level at 722 certainly isn't excessive (mine was between 1500 and 2000 when on injections). After extensive searching I am unable to find how long levels remain high when stopping any supplementation so results can be skewed by this fact.
I really do sympathise with the brain fog - mine can be so bad it's painful at times and is one of my biggest problems. I would just add when I feel very unwell with this, and it is like an illness in itself rather than a symptom, chemicals really cause me a problem eg plug in airfreshners, perfumed cleaners, printer ink, bleach, any body product with perfume, anything in spray form, new items like curtains, carpets, fumes of any sort, even things like pet spot treatment for fleas. It may be worth assessing your environment as removal of these does help.
Thank you, I will make time to watch it. I had seven doses over 6 months, so I don't think thay classes as a loading dose. My last one was November but I only quite my b-complex 2 days ago.
Back in August my B12 was 1103 pmol/L, active was greater than 150 pmol/L. They don't give a range for active unfamiliar with blue horizon.
Yeah it's awful. I've got a 3 1/2 year old son and I've never met him without brain fog. Who could have thought life would be so bloody rubbish eh!
Loading doses comprise an injection every other day for 2 weeks. I think we are back to how long is a piece of string with what your results are showing now - as I said, there is no definitive answer for how long levels remain high from supplementation. My experience has been an instant improvement from an injection and I don't feel you are getting anything like that. You have made sure all your thyroid levels, and other co-factors like vitamin d, ferritin and magnesium, are good I presume?
Yes my thyroid bloods are optimal and all the other co-factors are in good order. The only issue is my cortisol. Low in 9am blood draw and below the reference range on a 5 point saliva test. Is blue horizon considered to be a good testing company for B12 levels? They have 20% off atm and was thinking of ordering one of thier B12 advanced profile tests.
I’ve not used them, only Medichecks and Monitor My Health for first time in December which picked up low folate. Thyroid UK always have a 10% code with both but I usually wait for the company’s 20%. I don’t know anything about cortisol. My only other thought, after chemical sensitivity, is coeliac, presuming your thyroid is autoimmune.
Ok thank you. I've cut gluten to a bare minimum, I don't believe it made a difference. 2 x negative results on coeliac screen, nothing to report on food sensitivity test. I keep my gluten to a bare minimum, it's a poor quality source of energy anyway. It could be chemical sensitivity. It's something I'll have to investigate if things carry on.
My body temp is always low, and it fluctuates as well.
it’s a nightmare. I was reading recently how important liver health is for thyroid. My mother had overactive thyroid and non-alcoholic cirrhosis of the liver none of which was ever explained of course in those days. However, interestingly, Medichecks did suggest a liver test on one occasion based on my thyroid results which thankfully came back normal. This is just my experience.
The liver is incredibly important as it converts me T4 - T3 in the body than any other organ apart from the thyroid gland. Assuming you haven't lost any due cell tissue to autoimmune attack.
I almost forgot…mobile phone signal, wi-fi, blue tooth speakers/earphones etc. and anything else that uses such signals. Easy enough to test but you have to be thorough.
That's fair enough and a sensible route - it's good to have a plan. I have explored EMF a number of times, particularly in the early days of the technology as I always felt worse when using it; fuzzy headed and pins and needles in hands and arm. I'm sure there are tests but I haven't undergone any. It's hard to avoid these days unless you build a Faraday cage but I'm a believer in reducing the load when possible. It's never going to do you any good even if it's not causing symptoms. The same applies to chemicals and additives.
Thyroid is an interesting one (or would be if it were someone else!). Diagnosed hypothyroid late twenties/early thirties after months of feeling really poorly. Treated with thyroxin for a couple of years but never felt better. The endocrinologist decided to stop treatment to see how things went - no other explanation - and I have randomly had TSH levels checked over the years but not over range so that was that.
Years later, after exhaustive tests, chronic ill health and a wast of most of my life, I was diagnosed with b12 deficiency, iron deficiency and weak coeliac antibodies. Loading doses were miraculous and I felt better almost immediately and better than I had ever done. I was one of the unfortunate people who needed monthly injections to stay well and fought tooth and nail to get that instated. The road was rocky before but when lockdown came my surgery decided I would no longer be given injections and they have stuck to their guns since - even with a diagnosis of Pernicious Anaemia on my health record. I now have as little to do with them as possible and test privately in order to make a decision on what to do next. I think all my issues are related to B12. I'm currently at a crossroads but won't be able to carry on this way much longer. Hope this helps you in some way and you certainly aren't alone - there is an answer somewhere. Best wishes.
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