Pernicious Anaemia Society
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Newbie looking for advice

Hi I recently joined as I think many of my symptoms indicate PA - brain fog, headaches, pains in feet, tingling in hands and face etc. I have previously suffered with PMDD and some of the symptoms I can now see overlap (esp headaches, fatigue, brain fog, mood swings) but post hysterectomy, I'm beginning to think perhaps there's something else going on! Many of my symptoms are better, but some like the tingling, are things I didn't really have before.

My questions are twofold: firstly, I have some "odd" symptoms I've not seen elsewhere and wondered if these are related - itchy skin over my head, neck and shoulders and also terrible pain in my jaw and teeth and sensitive teeth/ receding gums for no apparent reason. I asked a dentist and he said this can be a result of low B12 and iron. Has anyone else had experience of this? And also, some of my symptoms are sometimes so bad I feel I can't go on (this weekend I was in real pain with teeth/jaw, stomach cramps, brain fog, exhaustion - can hardly get up the stairs etc) but after a few days that has passed and I now feel (relatively) better. Am I going mad or can symptoms be cyclical? And if so, why is that?

My other question is about approaching my GP as he's now checked with 2 haematologists who said categorically I can't have B12 problems so he won't give me injections but suggests I have B12 and iron oral supplements as he thinks this is diet related. I am a vegetarian but have been for years (also given blood regularly for years) and not had a problem so far and I eat lots of cheese, lentils, beans, eggs etc. He has no other explanation for my symptoms but wants to refer me to a neurologist to see if there's any cause for my symptoms or if they are, in his words, psychological. I'm unsure if to start taking the tablets and see what happens or to try another GP armed with the guidance I've downloaded from the PAS member's bit of the website.

I've put my bloods below. Also I should say that my daughter (14) was diagnosed about 18m ago wtih severe hypothyroidism. I have been tested and appear not to have a thyroid problem but do have the antibodies.

Iron - 9

Tranferrin - 3.7

Vit D 98 (was 42 and I've been on high supplements for the last 2 months)

Ferritin 14

Folate 11.2

B12 was 249 in Dec, latest test was 226

Thanks for reading this long post and any advice would be much appreciated :)

11 Replies

If you have thyroid anti-bodies then you have Hashimotos - auto -immune Thyroiditis and you should be treated. Many of your symptoms could be connected to this.

For a Hashi's sufferer your B12 and Ferritin are very low. Difficult to tell without ranges as labs do vary .

As auto immune issues like to hunt in packs then ruling out PA would be a good idea.

Being gluten free helps to reduce anti bodies albeit it took me three yesrs.

I am not a medic - just a Hashi's sufferer with a B12 issue. If you have your results then you could post them on the thyroid forum for comment. 😊


Thanks Marz. That's really interesting. I will have to dig out my thyroid results. My daughter, though very severe, didn't have a goitre, but other signs (very pale, can't sleep, stopped growing, hot/cold etc) and is only just now catching up in height and starting to hit puberty as she should. I've not had her B12 checked though I have asked, so will definitely take a look at that. Do I infer that for Hashis your B12/ferritin would be high? She is also veggie like me though I should add that we eat fish. Thank you!

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Have been on the Thyroid Forum here on HU for almost 6 years and it is often suggested that for the Thyroid hormones to work well ( ie conversion of T4 into the Active T3 ) good levels are needed of Ferritin - Folate - B12 - VitD. Ferritin and Folate to be halfway in range and B12 and VitD towards the top. Not the case for everyone but with 52,000 people on the Thyroid forum the scenario has been presented and answered time and time again. Guess we Hypos need good levels more so than other conditions.

It would seem that most thyroid sufferers have Low B12 - VitD etc. and I do wonder sometimes which comes first - chicken or egg. I wrote a post about it some years back as it seemed so common ...

Being a veggie does add to your problem with B12 deficiency I have read .....

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Thank you. I was worried, but logically didn't think it was that as we eat well (all fresh home coked food and I do eat fish as well) and I've been veggie for almost 30 years now but perhaps as you say it's taken time.

re the nitrous oxide, not as far as I know. I've never had any dental work either which is why having bad receding gums in some places is odd for me so I've definitely not had any nitrous oxide for that...


Maybe Low VitD affecting gums :-) Sadly our health is linked to what we can absorb - rather than what we eat .....

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I have low B12 and just finished loading dose for severe vitD deficiency and my gums have receded markedly these past few months.

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... recently read that as most salmon is farmed there is less appropriate food value - so best to seek out wild fish ....


I believe this a hotly debated topic - judging by the amount of websites explaining the pros and cons ....

There is more saturated fat in farmed salmon I have read and most farmed salmon is only as good as the feed and anti-biotics they are given ....

I live in Crete so am able to eat lots of local oily fishes - probably well contaminated by the nuclear subs sneaking in and out of the nearby bay .... :-)


Seems very confusing to me, all this conflicting info on vegetarian diet:

I've been a vegetarian for about 36 years now and have read that only vegans have dietary deficiency/ vegans and strict vegetarians (whatever that means)/that cheese and eggs have sufficient B12/ that they don't/ that cheese does but eggs not, etc etc etc. Often, in American research, I'm not sure that the medical experts understand the difference in diets between vegetarians and vegans at all and so lump them together.

Martyn Hooper's book seems to suggest that a vegetarian need not worry about diet if eating cheese and eggs. So I won't.

I think it's probably safe to say that if you have been eating fish too, you should be able to rule out a dietary reason for deficiency. My teeth and gums have got a lot worse since I was found to be B12 deficient, sinuses too: face pain common. Had a tooth out and got a bone infection which took a long time to heal. Think infections and poor healing common, too.

I'm 58 and up till 2 years ago was very healthy, hardly ever at GPs, and a woodwork teacher which needs a certain amount of fitness. Now I'm not any of those things- except 58 !.


Thanks and I agree - didn't think my diet was an issue and lots of the advice seems conflicting! I have read that as you age, changes in your gut make you less able to absorb the B12 hence why it's more common in hte elderly (not suggesting you are!!). But I am going to follow up with my dentist about the gum thing as it does seem to be related I think :)


Nicole, I didn't think being 56 stopped me from doing anything and could not be categorised as 'elderly' - now I'm 58 and have 'Functional B12 deficiency/insufficiency at tissue level', I feel like I've aged enough to be that lively 56 year old's mum!

However, since I'm having a not-too-bad day so far, I would say changes in your gut might apply to others, not sure about me. Reason? I've been sent to 2 different gastroenterologists so far- neither of them was one bit interested- no examinations, barely a 5 minute chat- so how can you tell ? One of them said to me "unless you have a stomach ache, I can't do anything" -fair enough.

My gum/teeth problem doesn't stem from Vitamin D deficiency- it's has been checked and it's not low. I did have a problem in 2013 with my parotid glands being infected, and saliva ducts deformed. One very obvious side effect: when I was hungry, I grew hamster-pouches, mainly in restaurants, until food arrived ! (Pressure, not pain, also quite fascinating- and hilarious to family)

I'm currently trying to get someone to look into whether saliva transportation problems could have affected B12 status originally as haptocorrin is produced here, and is needed to protect extrinsic factor (from food) B12 from acids in stomach. Sounds like a thing to me, anyway.

Since saliva is also produced to keep mouth clean, could lack of it or reduced production be a reason for gums and teeth decline ? Also worth checking perhaps.


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