Am I suffering from PA or is it under... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Am I suffering from PA or is it underactive thyroid?

stig5882 profile image
20 Replies

Hi, just had second round of blood tests and still can't get a diagnosis as doc away on holoiday :(

Serum B12 is 455 pg/mL (180 - 914)

Serum folate is 11.2 ng/mL (3.1 - 20.0)

Serum ferritin is 122 ug/L (13 - 150)

I am on no medications and have absolutely no idea what all this means :( I just want this air hunger to stop as its really scaring me now... :(

Written by
stig5882 profile image
stig5882
To view profiles and participate in discussions please or .
Read more about...
20 Replies
LadyNZ profile image
LadyNZ

I'm not a professional, but those test results look normal to me, although the B12 serum test is notoriously unreliable. It can come back normal and you can still be deficient. I'm not sure what you mean by 'air hunger' but have you considered that you might be gluten intolerant? Most people who are, don't know it and tests for that also are unreliable. However, the Celiac Disease centre of the University of Chicago, lists over 300 different symptoms and illnesses caused by gluten. Lots of info in Google about gluten intolerance.

stig5882 profile image
stig5882 in reply toLadyNZ

Thankyou for your reply LadyNZ. By 'air hunger' I mean always needing to take deep breaths as I feel starved of oxygen. I need to repeatedly completely empty my lungs and then take a deep breath but most times I get no satisfaction so feel the need to keep repeating the process which then makes me feel light headed and this is accompanied with palpatations in my neck and pains in the back of my head. :(

stig5882 profile image
stig5882 in reply toLadyNZ

Please don't tell me that ??? I LOVE bread and that gluten free stuff is vile :(

To hell with this aging thing, it's not fun anymore...lol Thanks LadyNZ I will look into this also. :) Thank you for replying. x

Marz profile image
Marz

If you think it's thyroid - then it would be a good idea to have some tests - TSH - FT4 - FT3 - Anti-TPO - Anti-TG.

Hope you soon feel better.

stig5882 profile image
stig5882 in reply toMarz

Thank you Marz for your response,

I have serum free T4 - 11.5 pmol/L (12.0 - 22.0 )

serum TSH - 4.9 mu/L (0.27 - 4.20 )

haemoglobin estimation 120 g/L (115 - 165)

platelet count 360 10*9/L (140 - 450)

Haematocrit 0.357 (0.350 - 0.470)

red blood cell (RBC) count 3.78 10*12/L (3.90 - 5.60)

serum 25-HO vit D3 level 107 nmol/L 70-200 nmol/L: replete.

Marz profile image
Marz in reply tostig5882

Judging by your results you are Hypothyroid. Your TSH is above range and the FT4 below, This will also mean your FT3 - the ACTIVE thyroid hormone will also be low. This could explain your breathlessness. T3 is needed in every one of your cells. You really need to start treating the thyroid.

It would be good to have the anti-bodies checked - anti-TPO and Anti-Tg - to rule out Hashimotos.

If you would like to have some additional advice I am happy to point you to good websites/books/articles if needed.

I have Hashimotos and also weekly B12 injections as I am without a Terminal Ileum....so not medically qualified.

stig5882 profile image
stig5882 in reply toMarz

Again THANK YOU Marz for you much appreciated help I am really grateful and when I eventually get to see my doctor next week I will ask for those tests and no doubt be back asking for your help again as I have seen on this forum that this is something that I am going to have educate myself about :/ Every day's a school day right? :) Blessings to you and I hope you have a good day. x

Marz profile image
Marz in reply tostig5882

Every day is a new day - and next year I will be 70. Click onto my name and you can read my Edited Profile - so you can see I have obtained my knowledge from the hedgerows of life :-) It has been a long journey but am now so much better. I have learnt so much from people on this forum and the Thyroid UK forum too....

Do not ever accept normal from your GP - that is an opinion and NOT a result. Also do not accept borderline - so you do not need treatment - you do. We are all here to assist and support.... Docs are having to abide by Guidelines - forgetting they are just that - guidelines. Gone are the days when GP's had time to listen to and observe the patient in order to make a diagnosis. Medicine was once an art - the art of diagnosis :-)

Polaris profile image
Polaris in reply tostig5882

As others have said, it could be both (interlinked) but your low RBC means that not enough oxygen is being delivered into your blood (anaemia) and could be responsible for the air hunger, which should be investigated.

There is no gold standard test for B12 def. and the serum B12 only measures what is in the blood, not whether it is available to the tissues. Among other things, air hunger could be a neurological symptom of severe B12 deficiency, which needs to be treated without delay as there is a short window before symptoms become irreversible.

b12deficiency.info/films

b12deficiency.info/signs-an...

ukneqas-haematinics.org.uk/... :

chriskresser.com/what-every...

cmim.org/pdf2014/funcion.ph...

Re. thyroid, many people only feel well when TSH is low and Dr A. Toft's book, 'Understanding Thyroid Disorders', published in association with the BMA is also a good source of information.

I hope you get answers soon stig.

stig5882 profile image
stig5882 in reply toPolaris

!wow!...that's a lot of info :/ Thank you so much for all your help and indeed I will get a copy of Dr. Toft's book as I am absolutely clueless about all this (do they do a Thyroid book for Dummie's)? LOL l will indeed to a ot of reading between now and my next visit to my doctor. Bless you and hope you have a Good day Polaris. :)

Marz profile image
Marz in reply tostig5882

thyroiduk.org.uk/tuk/testin...

The above link will take you to the main Thyroid UK website - where you can read and learn so much about the thyroid and its associated deficiencies.....

Just take it a step at a time - so much to learn - but we have to do so sadly as Docs are not that well informed and are hemmed in by blood tests and their ranges. How can it be that one size fits all ?

Hypopotamus profile image
Hypopotamus

For me, it is both hypothyroidism and a B12 problem.

Mandiejj profile image
Mandiejj

Stig5882

Those bloods seem ok from a lower perspective.

Mine are

B12=274

Folate=1

Ferritin =51

Docs have said mine all are in range albeit I'm Folate deficient. All I get is folic acid suppliments which don't increase my levels. But I also have ANA and APCA antibodies so there just waiting for my B12 to drop under 200 for PA diagnosis.

LadyNZ profile image
LadyNZ in reply toMandiejj

With a ferritin level that low, I'd take iron tablets if it was me. I had low ferritin several years ago and I didn't feel any good until my levels got up to 75. Your folate is very low also. I think you should be on B12 as well as folic acid tablets. Your B12 is almost bordering on a deficiency and taking folic acid when you are B12 deficient will only make it worse.

Mandiejj profile image
Mandiejj in reply toLadyNZ

They keep giving folic acid but I'm not absorbing g it as it's just dropping . I'm due another blood test in two weeks. They eventually checking for IF antibodies. But if my B12 drops that low surely I won't have it.

4 month ago they said it would take 5 years for PA when my B12 was 396. Folate 1.7 and ferritin 79 but it's dropped really quick. Knowing the results you would think they would just start therapy. As it would limit the damage

Polaris profile image
Polaris in reply toMandiejj

LadyNZ is right about the folic acid - it should never be given while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse.

"Folate is required for the synthesis of red blood cells, those tiny disc shaped cells that carry oxygen in your blood to deliver it to each and every corner of your body. However, B12 is required in a reaction that converts folate into a form usable by the body to make red blood cells. Without that, folate cannot participate in the synthesis of red blood cells. So without B12, folate is literally of no use! ". - 'The B12 Deficiency Survival Handbook', by Dr Aqsa Ghazanfar.

stig5882 profile image
stig5882 in reply toMandiejj

Thank you Mandiejj for your reply as I said this is all just science to me (I haven't got a clue what this all means) :( just have to wait until doctor returns from holiday but I feel swamped by all this information...lol how on earth do you all take so much in? I am afraid I will never be able to understand whats going on never mind keeping tabs on doctors that are not clued up on all of these things...:(

Bless all you lovely people on this forum for without you all I think I'll go insane ......

stig5882 profile image
stig5882 in reply tostig5882

Thank you Polaris for your explanation this has helped me to understand a bit more of this enormous minefield.

Polaris profile image
Polaris in reply tostig5882

You're right, it is a minefield, really complicated, hard to explain and linked to so many different symptoms and diseases. I think this is why medics haven't time or training to get to the root of the many symptoms and problems it causes.

The film is a good start as it covers a lot and is based on Sally Pacholok and Dr. J Stuart's book, 'Could it be be B12? ', which I'd thoroughly recommend.

stig5882 profile image
stig5882

Thanks again and I will order that book right now. :)

Not what you're looking for?

You may also like...

My brother is no better 😔M.S and/or PA

I have been injecting my brother for months now with Methylcobalamin and he is no better in his...
Marymary7 profile image

Serious memory loss - do I have B12 deficiency or PA?

I am diagnosed Mild Cognitive Impairment Other symptoms would b balance problems - fell last...
mfrie profile image

Is it MS or PA??!!

Hi everyone I am reaching out in desperation. I live in Vwgas and I have been sick since 2015....
Skingal74 profile image

Assistance required with interpreting B12 and Pernicious Anaemia Blood Tests.....

Hello I was wondering if anyone here could help me in interpreting some Vitamin B12, Intrinsic...
ARRozental profile image

Suffering from PA for long

I am suffering from PA for some years now. It got undetected(rather not diagnosed properly) for...
mahesh104 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.