Hi all,I have hashimotos and hypothyroidism and have been a member on the thyroid forum for a while. It's been suggested I post on here for some interpretation of some bloods. I have been tested for PA but was told it was normal, but I'm sceptical given what I've read and what I'm experiencing.
Apologies for my laziness, but I've just copied my post from the other board so please only use what's relevant.................
I posted a couple of weeks ago as my blood results had dropped slightly from the previous lot 6 months ago and I am feel pretty rotten. GP wouldn't up my levo from 100 as results were "normal"......starting to despise that word!! She did however agree to some vitamin tests and T3 (which she then backtracked on)
I'd be grateful for comments on the below. I see my GP again in 2 weeks after they requested an appt based on bloods
Serum zinc 17.3 (10.70-19.50umol)
Serum magnesium 0.80(0.7-1.0nmol)
Serum ferritin 64 (10-120ng/ml)
Serum folate 19.5 (3-12ng/ml) abnormal
Serum B12 443 (200-900pg/ml) - please note I take 1200ug per day sublingual supplement of B12 (this is up from 236 previous test Dec 2022)
Serum 25-OH vit D 82.8 (50-150nmol) - please note I take 50ug per day supplement (up from 75.3 Dec 2022)
TSH 3.15 (0.1-5.0mU/L) up from 2.71 Dec
Serum T4 18 (12-23p/mol) down from 23 in Dec
T3 done privately in December was 4.33 (3.1-6.8) but obviously T4 has dropped since then
Interestingly some of my full blood counts have been a little weird.....although doc says it's fine
- MCH 33.6 (26.5-31.5) up from 32.9 in Dec. This has been abnormal for 2 years
- MCV 99.1 (80-100fl) down from 100.4 Dec. This has fluctuated between abnormal and borderline high for 2 years
anti nuclear factor is also abnormal
I want to see the GP before I pay for another private test as its quite frankly adding up!! Any help would be gratefully received. I have lifted all the links from previous posts and taken the bits I need, such as my TSH being way over the optimal and still room for movement, especially based on my symptoms. I will present these to my GP.
I was free of symptoms between Decemeber and June before my T4 dropped. Symptoms include
- Extreme exhaustion - I slept 5 hours for a "nap" yesterday and another 10 hours last night and am still dead on my feet
-Loss of appetite and a little nauseous sometimes
- breathlessness and palpatations doing basic stuff like walking up the stairs
- dry skin and itchy scalp
- swollen neck (I've had scans previously and my thyroid is not smooth but has no nodules)
- brain fog and can't get my words out
- inability to concentrate
- tinnitus is raging
- poor memory
Any ideas?
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PurpleChez
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Sorry your post didn't get answered quickly but we're not as active as the thyroid forum & everyone must have been having a lazy sunday, me included
Your first b12 is rather on the low end. Symptoms sound b12 but as you know it overlaps with hypothyroid, low iron, etc.
However it's not abnormal to have b12 deficiency even though tablets raise serum levels. And taking 1200mcg b12 since when? december? Should have raised levels much higher. So it could very well be pernicious anemia.
Testing is tricky because of the supplementation. But you could push for a trial of injections after getting the standard tests.. explain that levels have barely risen on high dose tablets.
Typical tests they should do include homocysteine, MMA, intrinsic factor antibodies, gastric parietal cell antibodies.
Will post some links separately. I'm sure others will reply too soon.
You said they did "PA testing" but do you know what exactly? If it was intrinsic factor antibodies, it can come back negative about half the time in people why truly do have PA, so a negative test on its own is not sufficient to exclude PA.
Sorry your GP is not being very helpful Wish we didn't have to fight so hard for proper diagnosis & treatment. It saps what little energy we have left, if any! If they could walk a mile in our shoes... (do you have that saying in the UK?)
Yes the B12 supplements are since December when I was 236 on my bloods.....the GP wasn't having any of it when I said I was deficient at those levels and I got the normal guff about it being in range. They suggested I supplement. I have an ace diet, I pay special attention to it with my hashimotos otherwise it all gets worse so I do pretty well with my vitamin intake BUT if my body can't deal with it then the GP needs to step up.
Really appreciate the advice. I've written down a load of stuff to discuss with the GP and if they won't listen I'll up the B12 and test privately and then go armed.
It may well not be PA but I'd like them to be sure given the cross over of symptoms
Like Christine48 says , and i say in many other posts but not here yet, i think 😂... if i were you i'd stop the b12, get all the testing done, and push for injections. As a last resort you can try self injecting.
Normally they say it takes up to 4 months to clear tablets from the system. I couldn't say if anything will show up if you'd wait just a few weeks... i tested while on tablets and everything was 'normal'. It's a tricky situation.
In any case I'm not a doctor by any means but if you're barely absorbing high dose tablets then it points to PA or some other malabsorption problem. You won't do yourself any favors by continuing tablets, unless they help symptoms, which they don't seem to be.
Thank you jade_s......yes it was intrinsic factor which I read isn't reliable......but GPs love to solely rely on a blood test. They may be right and I may not have it but surely dig a bit deeper before writing it off, especially as my other bloods are all over the place!!
I got diagnosed 6 years ago with my throid - it took 6 months of hospital admissions, scans and tests, all because (despite family history) noone did a thyroid blood test. But you trust them blindly because they're meant to know. Then last June I got sick again and they kept telling me my bloods were fine. By November I was hospital bound again and I signed up for patient access. I was horrified when I saw my blood results back to diagnosis. In 2021 they'd told me I hadn't got hashimotos but my bloods showed I did. From that point on i checked out, joined these forums and kept track of my bloods.
I'm annoyed I didn't click sooner, but I make sure I'm all over them now and encourage my friends who have the same issues, to dig deeper. These forums are a god send and in grateful to each of you for your help and contribution ❤️
Sadly we don't start digging until we get ill, unless we have a particular interest in those things. I hadn't even heard of B12 deficiency until November when my sister flagged it up. It's only being on these forms and discussing things that we discover how little GPs do know and the lack of training they have around biochemistry/deficiencies. I curse myself for not looking into this years ago as the problem could've been addressed then. All of these illnesses are preventable.
Our resident scientist FlipperTD would be cross if I let this one comment slip by. Technically the intrinsic factor test isn't "unreliable" but rather for whatever reason, the antibodies are negative in people with true PA about half the time. We had a discussion about this recently and it could be that the antibodies are "waxing and waning". Anyway that doesn't really help you in practice but just to stay accurate.
So don't think 'i don't have PA because the IF AB test came back negative again'
Hi Jade has answered you very comprehensively but can I just strongly reinforce what she said about taking no supplements of B12 for a good few weeks before your next blood test. Also wanted to say my daughter has had Hashimotos for almost 40 yrs and been on thyroxine but started 10 yrs ago to be really tired all the time. As I have PA and have been on injections for 38 years I suggested she request this be tested at her 6 monthly blood test. She was found to have PA and is now on regular injections which have made a difference. If you do have PA normally tablets make little difference owing to malabsorption issues. The few weeks without B12 tablets will be difficult but well worth it if you get a confirmed low level, then insist your doc follows the NICE guidelines for treatment. Sleepybunny on this forum is a mine of information for info , sources, letters etc to support your battle to get appropriate treatment. Very good luck.
Thank you Christine48. I think I'm going to force the thyroid issue and then drop my B12 off for accurate testing. As you say, it's worth the pain to get things done right. Bloody GPs saying supplement.....I do wonder if they know it buggers stuff up for accurate diagnosis and it gives them an out.....but maybe they've made me cynical!
Hi, it looks like your tsh is increasing so increasing levo would be worth a try. You could try to convince your doctor with nhs guidelines that say ‘normal’ test results should be taken into consideration along with a patients symptoms as some people need tsh closer to 1 to alleviate symptoms . Also, your symptoms are similar to lots of deficiencies ( b12, folate, vit d) , and also perimenopause and menopause, sorry to throw another thing in to the mix. I know it’s overwhelming managing all this and trying to decipher what’s making you feel rotten whilst battling with gps, ive still not found the magic balance of medication and diet. Hope you get somewhere with it all soon xx
Thank you WeeB. I just wish they'd listen and look at the whole picture rather than just what they consider abnormal results. They don't like you advocating for yourself because of ego.....im hoping to have better luck in my next appt in 2 weeks! I am not beaten yet, but am very weary, like most on both forums. It shouldn't be this hard. Whatever it is, thats fine, just bloody decide 🤣Thank you for your kind words xx
Just an update......I put in a formal complaint to GP, head GP appt today and they have upped my meds to 125. Thank you all for your help and support xxx
a b12 of 246 originally tells me you definitely have b12 deficiency.
Find a doc that will give you injections. There is another post here recently where someone mentions a doc that gave them injections. A DR K. Look for that message. Find that doc and go visit them. Waiting weeks and trying to get the same doc to treat you will be a waste.
It's hard to find docs that trielt understand b12.
It's not toxic and any level as long as you don't have an existing liver or kidney function issue.
This injections when done safely are harmless. It is important for you to start injections soon. Do them daily.
Don't let anyone talk you into spacing them out.
Once you do the first injection, the b12 tests will not be accurate this any b12 tests are worthless. Better to base results clinically from your symptoms.
It takes 4 years for the b12 in your liver to get depleated this it will take a long time, 1.5 to 2 years for you to get back on your feet. The beginning stages are slow but eventually you get in a good place.
B12 is responsible for cell generation. When deficient your cells still generating. This you get brain fog, pain, numbness, etc.
If left untreated the damage and symptoms can b become permanent.
This it's vital to get treatment.
If you can't find a doc, get your own supplies and start injecting. We all buy b12 from Germany.
This backs up a lot of the claims made here which you will need to back when talking with docs.
I was 190 and bed ridden with fatigue, debilitating back pain, brain fog, heart oaky and shortness of breath. Now after 2 years of injections I'm climbing mountains. I will need b12 injections for life!
This forum and the pernicious anemia society (PaS) are the best place you can find I the world for support and I do on b12 deficiency.
This b12 ranges are rubbish. 240 is not normal! Read that article, you will feel relieved that there is some medical understanding and it will educate you.
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Wish we didn't have to fight so hard for proper diagnosis & treatment. It saps what little energy we have left, if any! If they could walk a mile in our shoes... (do you have that saying in the UK?) 
Serum v active b12 confusion 
New Doctor, still confused.....
Supplementing Ferritin/ Folate advice.Hello friends. I have been supplementing B12 for some time. But since
Why no consistency when diagnosing B12D
Been advised to also post on this forum re:B12
