Endocrinolgist : Hello again. Anyone... - Pernicious Anaemi...

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Endocrinolgist

kristianjones profile image
6 Replies

Hello again.

Anyone else been to see an endo re: PA ?

I had a referral from my GP and on arriving at the endocrinologists he was baffled as to why i was sent to him.

I ask him if i even had PA and he checked my last blood results and said yes i am "weakly positive for Parietal cell"

I asked what that meant and he replied "you have a bit of PA "

Now im not a doctor but i either have it or I dont right?

Asked him about getting more B12 and he said no as i have a serum level of 2000+ now and therefore my issues can not (in a stern voice) be b12 related anymore and i must have something else.

Bit of a loss as what to do. Symptoms are better when i use a b12 oral spray, but i keep getting a crazy twitch in my eye, along with fatigue and mental confusion almost anxiety.

I read somewhere that my magnesium could be being lowered due to b12 trying to be processed? Hence the irritating eye twitch!?

Starting to feel like i maybe dont have b12 issues if my level is now high? But my symptoms remain.

I asked the endo about absorption at cell level and he said something about MVC and that it only affects a very tiny set of people.

Confused. Thanks for reading

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kristianjones
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Gambit62 profile image
Gambit62Administrator

endo specialises in the systems in your body that control hormones (thyroid etc).

Although there are some links between B12 and some of the hormone systems functioning properly the links are pretty tentative so not surprised to see that your endo doesn't really know much about B12 and was totally baffled as to why you had been referred. It would be a useful referal for thyorid issues but not for B12

The usual specialisms that are relevant to issues related to B12 are haematology (effects on blood), gastrology (as it is a problem with absorption in one specialised area of your gut and depending on what exactly the cause is can have other consequences for the gut), neurologist (neurological effects). Psychiatric is another possible if the main symptoms are neuro-psychiatric in nature).

Parietal cell antibodies is prone to false positives so not recommended in the UK anymore as a test. IFA (intrinsic factor antibodies) is a problematic test in that it is prone to false negatives 40-60% of time depending on the assay method, so whilst a positive is a good indicator that you do have PA (supplementing can cause false positives), a negative is a long way from proving that you don't.

Normal range for B12 doesn't apply after loading shots as these throw a completely new environmental factor in to the picture - response to high levels of B12 in serum. Serum B12 is a measure of how much B12 is in your blood - it doesn't tell you anything about how much of that is actually getting to your cells or how well your cells are doing in processing it - which is what really counts.

It might be worth pointing your GP at this area of the PAS website specifically designed to help medics understand the condition and how patients should be treated

pernicious-anaemia-society....

kristianjones profile image
kristianjones in reply to Gambit62

Thank you for the reply. And the link. Im moving GP Soon as ive just moved house so will give these new drs a try and see what they say. And show them the links.

Just like many i find this whole b12 issue a really complicated and exhausting (pun intended) problem. Never know what to do, to actually.. fix myself.

clivealive profile image
clivealiveForum Support in reply to kristianjones

With your current high level of B12 plus the oral spray it would be good to get your Folate level tested - or do you know what it is?

kristianjones profile image
kristianjones in reply to clivealive

I don't actually. It was tested at my last bloods but they didnt give me the number just said "normal".

I only use the spray when im really really rough not an every day thing.

I will ask for my folate to be tested at my next appointment.

Does folate decrease with b12 absorption/process?

clivealive profile image
clivealiveForum Support in reply to kristianjones

The three components that the body needs in order to create red blood cells are iron, B12, and folate. When you're low on any of the three, your body can't use just the remaining components to go on making cells, so those components continue to exist in the body but not get used. (This lack of production causes anemia.)

When you get more of the missing component, the body begins making more cells.

Since it is making the cells from all three components, all three are being pulled from. So it does make sense that, if you were low enough in B12 to have become anemic, and you've now been given B12, your body is trying to catch up on cell production and is drawing on the folate and iron in your body for that purpose.

Personally, I have supplemented with folate 400μg every day for more years than I can remember but then I've had P.A. and B12 injections for more than 45 years.

Everyone seems to need to find their own individual balance of what additional supplements their body needs.

I am not a medically trained person.

I wish you well

Patmcf profile image
Patmcf

I have neurological symptoms and tested positive on EMG test for arms and legs, I am waiting for another appointment with the neurologist but in the meantime I am trying to help myself. My B12 was normal but in the low range, my folate was normal but again in the low range but my ferritin was over the top of the range. I am taking sublingual B12 tablets since this blood test but worry about the folate level not being good but I don't know whether to take folate as my ferritin level is so high. I have an appointment with my GP next week but don't hold out much hope that she will give me an answer that is helpful as I don't think she understands any of this from my past experience.

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