Is this PA? Results attached. I also ... - Pernicious Anaemi...

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Is this PA? Results attached. I also have SIBO and Hashis.

Incoguto profile image
8 Replies

Hey everyone,

I'm a brand new member here, having a long list of symptoms. I also have Hashimotos disease (I take Armour thyroid), SIBO (will be treating it next week with my gastro's and dietician's help). I am struggling to feel well on my thyroid meds so I wanted to check if I might have some iron/b12 issues.

Please see my results below, my MCV and MCH is almost always below range, even though I supplement iron with double dose of Floradix and meat. I will attach the second page of results for iron, b12, ferritin, folate below in a comment.

I have a crushing fatigue every day, sometimes it's a short spell, sometimes it lasts all day. I am puffy, on and off anxious, shaky, pale, brain foggy, have pins needles, dry eyes, occasionally crawling and burning/hot sensations, palpitations, dizziness etc.

I also take methylfolate 400mg, solgar b12 1000mcg nuggets everyday.

Before taking any b12, my b12 level was 280 (197-771), back in 2017.

I'm sure SIBO can contribute to it it too as much as Hashis.

My mum has Hashis,RA and had anemia, had b12 shots before. I wonder if something similar is happening with me. I am considering buying ampoules of b12 to self-inject.

My RBC is always a bit over range, not sure if this is due to taking thyroid meds or Hashis.

Thank you for reading it and for your help in advance!

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Incoguto
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Incoguto profile image
Incoguto

Second page of results:

Results
Sleepybunny profile image
Sleepybunny in reply toIncoguto

Hi,

Welcome to the forum.

I'm struggling to read the results in above post.

Maybe you can type some of them out when you have time especially serum B12, folate, ferritin and other iron tests.

Do you mind me asking which country you are in?

The reason I'm asking is that treatment of B12 deficiency can vary between countries.

The type of B12 used can also vary.

I suggest you put your thyroid results on Thyroid UK forum on Health Unlocked along with an outline of your story.

A few B12 links that may be of interest

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles and a page for health professionals.

pernicious-anaemia-society....

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

It is possible to have the symptoms of B12 deficiency with a normal range serum B12 result or even an above range result. Look up Functional B12 deficiency.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper founded PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

NHS link about red blood cell count

nhs.uk/conditions/red-blood...

I hope you find answers soon.

Incoguto profile image
Incoguto in reply toSleepybunny

Thanks Sleepybunny!I'm based in Ireland. It was suggested to me on the thyroid forum that I might do better with b12 injections than pills as I have SIBO and Hashimotos.

I have ordered b12 ampoules from a German pharmacy, Hevert 1000 Hydroxy, they are on the way.

My results are:

B12 = 974 (range up to 771) with supplementation of Solgar as above, without supplementation it was 280, range starts at 197

Folate = 13.3 ug/l with supplementation of methyfolate 400, it was borderline low at 4 about 2 months ago

Iron = 11.3 (5.8 - 34.5) supplementing Floradix x 2 doses a day and eating meat

Ferritin = 44.5 (13-150)

UIBC = 36.1 (24.2 - 70.1)

TIBC = 47.4 (41 - 77)

Both MCV and MCH below range.

Thank you for the links! Really appreciate it

Gambit62 profile image
Gambit62Administrator

Your B12 levels are already over range with the oral dosing that you are taking which implies that you don't have a B12 absorption problem at the moment. You might want to think about dropping the amount of oral doses that you are taking - it isn't harmful except to your wallet/purse.

I know that in the past there has been a lot of advice on the TUK forum about thyroid patients needing levels over 1000 but there doesn't appear to be any real basis for that. Serum B12. It is probably a misinterpretation of a finding that patients with PA find that are on injections report on average needing levels over 1000 to feel well - reason for that is unknown. Interpreting serum B12 is difficult anyway - its really a test that is good for catching absorption problems through drops overtime than a test that can tell you if someone is at the point in the range that is right for them. 280 was well within the normal range so isn't a red flag for deficiency and may have been the right point for you. If you had had levels that were much higher in the past (20%+ higher - that's the accuracy of the test) then that would be indicative of an absorption problem,

The red blood cell counts that are out of range indicate your red blood cells are smaller than normal which is an indicator for iron deficiency rather than B12 deficiency which could lead to macrocytosis in which your red blood cells are larger and rounder than normal but you also say that your results are normally low so it may just be what is right for you - normal ranges are where 90% of the population are okay which means that some people just naturally sit either above or below the normal range.

Patients with hashimotos do have a high chance of developing a B12 deficiency - at least two mechanisms that can cause it - slow gut transit as a result of the thyroid issues or developing another auto-immune disorder. However, at the moment your blood tests aren't really suggesting that you have a B12 deficiency.

They do indicate that you may beover medicated for your thyroid so that would bethe obvious thing to follow up on if you are feeling unwell. If sorting that out doesn't sort out how you are feeling then that would be the time to look into other possibilities.

Incoguto profile image
Incoguto in reply toGambit62

Thank you. I guess I was more wondering about the functional deficiency e.g. where your levels are good in blood, but don't get into cells for whatever reason? Thanks, my thyroid isn't overactive, medication I take naturalny suppresses TSH.

EiCa profile image
EiCa

Do you take large supplements of Vitamin D? 153 is a very high level. I struggle to absorb vitamin D so it seems you don't have an absorption problem. Vitamin D is fat-soluble and can cause problems if your level gets too high. There is a phenomena call Vitamin D called Vitamin D hypervitaminosis. This can happen with all fat-soluble vitamins including vitamin A and vitamin E.

Incoguto profile image
Incoguto in reply toEiCa

I had to start loading doses of 6000-8000 vit. D as my levels dropped to insufficient when taking 4000 units.The range for vit D is up to 125, I will need to reduce by possibly 2000-4000 units again.

I have SIBO and Hashimotos, this is why my b12 was only 14% of range, vit D before range, iron below range, folate just barely in range before supplementation started.

I am curious about functional uptake of vitamins in cells, I know I seem to absorb them into the bloodstream.

EiCa profile image
EiCa in reply toIncoguto

Tests for MMA (methylmalonic acid) and homocysteine are good indicators for cell uptake. Prior to supplementation my B12 level was 112. My homocysteine was 25 (very high) and my MMA was 1.05 ( also very high) After just two injections (really) my MMA was nearly within normal range and my homocysteine was 13. This is supposed to mean that the B12 is being absorbed into cells.

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