Frustration with health and PA diagnosis.

[kirstm85]

Hi all

I am new to this site and thought I would post on here to see if I can get any advice.

I am a 32 year old female and I have recently been struggling a bit with my health after 2 quite severe ear infections which landed me in hospital for a couple of nights each time. Since I have struggled with extreme fatigue, weak muscles, funny/dizzy vision and poor mental health which has resulted in me having quite a long time off work.

After a visit to my GP in June over my fatigue, a whole host of blood tests were ran and my liver function came back abnormal. This resulted in her testing for antibodies for types of autoimmune liver diseases. All the antibodies came back normal except for parietal cell antibodies which I tested positive for. My liver function is now fine.

In the past (in 2014) I had a low serum b12 level of 142 ng/l which was then retested a week later and because my levels came back at 152 ng/l, I was never treated with injections. Both my mum and my nan both have been diagnosed with pernicious anemia. Because of these results, previous knowledge of PA through family history I started to self inject every couple of months and everything was fine.

This year, because of a new job, working shifts and illness I failed to self inject and the last time I did was back in January. When my test results came back positive for parietal cell antibodies this June, I confessed to my GP that I have been self injecting for a few years but I haven't since January. She told me off and told me not to self inject so they could monitor and look for a decrease in my b12 levels to try and diagnose me.

My concern is I want it to be officially diagnosed so it can be documented and used in future if any other autoimmune diseases pop up in the future. I also suffer with alopecia areata ( since the age of 2). I am concerned my doctor wont take my blood test results seriously in spite of previously low b12 levels and testing positive for parietal cell antibodies. I find it bizarre that the doctors were quite willing to overlook a b12 result of 142 ng/l for someone in their 20's who frequently eats meat and dairy. I have also had consistently lower ferritin levels over the years and folate.

Listed below are some of my recent blood test results:

Serum b12

19 Jun 18 - 622 ng/l

20 Jul 18 - 481 ng/l

(note decrease over a 1 month period. Is this normal?)

Folate

19 Jun 18 - 4.3 ug/l (normal range >4.0 ug/l)

Ferritin

19 Jun 18 - 50.1 ug/l (normal range 22 - 322 ug/l)

Tyroid Function 19 Jun 18

THS 2.08 mu/L (normal range 0.35 - 5.50)

serum free T4 2.8 (normal range 7.86 to 14.41

Any advice on where to go with this would be much appreciated as I feel completely stuck and frustrated.

Thanks

[kirstm85]

Oh sorry, I forgot to add that I feel the not injecting to prove pernicious amaemia isn’t right. If it is that, it will mean my symptoms deteriating and I feel it’s wrong of my GP to ask that of me.

Also does anyone feel it would be worth my while to pay for an active b12 test?

Thanks

[Galixie]

Maybe it would help to point out to the doctor that the presence of parietal cell antibodies is clear evidence that the parietal cells lining the stomach are being attacked by your own immune system. The inability to absorb B12 from food is only one side effect of this immune response. It can also lead to gastric atrophy and other problems such as stomach cancer. Have you had an upper endoscopy done? While it is a fairly invasive test, it can provide an assessment of the amount of damage going on. It can also provide a definitive diagnosis if they find gastric atrophy.

[kirstm85 in reply to Galixie]

I’ve not had an endoscopy done. I spoke to my doctors on Friday and said I feel this issue needs to be looked into further and I mentioned an endoscopy but to doctor commented saying she knew very little, had to speak to another doctor. I feel like nothing will come of it though.

[Portia1974]

"She told me off and told me not to self inject so they could monitor and look for a decrease in my b12 levels to try and diagnose me"

Seems to me she had the opportunity to diagnose you when you came back positive for Parietal Cell antibodies and a level of 142 and a strong family history of PA! I feel your frustration!

"Serum b12

19 Jun 18 - 622 ng/l

20 Jul 18 - 481 ng/l "

It looks like in another month or so your GP will have her wish and you will be deficient again if not very low in range. It seems to me (I'm not a doctor obviously but...) that your previously deficient test and the downward trend of your levels on withdrawal of injections (plus the antibody test and family history) should be sufficient for a diagnosis. I'm sure more knowledgeable members will clarify that for you. But from my own experience it's pretty much what happened to me. Level of 109. Loading doses. Told I would be fine on oral supplements after that. I wasn't. Levels declined over a period of months until I was borderline deficient again. Now on 3 monthly jabs for life.

From those bloods though, PA potentially isn't your only issue. Although it's likely all connected the following is out of whack too from what I can see:

" Tyroid Function 19 Jun 18

THS 2.08 mu/L (normal range 0.35 - 5.50)

serum free T4 2.8 (normal range 7.86 to 14.41 "

This again looks very similar to my own results. I have just been diagnosed with Hypothyroidism. But because your TSH is in range they will probably tell you it's fine. Your T4 is most definitely not fine. I would urge you to go to the thyroiduk group on healthunlocked and post this and your other results. You look hypo to me but other more knowledgeable members and admins will be able to advise you on that and also your folate and iron levels.

"Folate

19 Jun 18 - 4.3 ug/l (normal range >4.0 ug/l) "

This is a really sneaky way of displaying a result. The upper part of that range should read around the 18-20 mark (depending on lab). And you need to be near the top end for your body to process b12. So you're verging on deficient there as well.

"Ferritin

19 Jun 18 - 50.1 ug/l (normal range 22 - 322 ug/l) "

Though not deficient you are not optimal either. All the advice suggest that you need to be in the middle of that range to be optimal. Lower levels can impact your thyroid function and processing of b12. It's also possible to have normal/low ferritin but still be iron deficient (indicated by serum iron and transferrin saturation)

Also, have you had your Vit D tested? It seems to go hand in hand with the issues you already have and a low level of that could be adding to your symptoms.

All in all I would aim to get fresh teststart of b12, active b12, folate, full thyroid panel ( tsh, ft4, ft3, and thyroid antibodies) and a full iron panel +ferritin and your Vit d. Your GP may not agree to all of this. But you can get medichecks kits for all of the above.

If your GP has a go at you for self treating again....ask her what you are supposed to do when no one will listen to you? And point out she had the opportunity to diagnose you and chose not to take it.

Wishing you well. I do hope you get somewhere. Px

[fbirder]

The problem with the anti-Parietal cell antibody test is that it gives too many false positives. So it’s useless as a diagnostic tool on its own. However, a positive on that test combined with low B12 and Metaplastic Gastric Atrophy was good enough to be diagnosed with PA.

So I agree that a gastroscopy might be what you want. If the gastroenterologist finds evidence of gastric atrophy in the body and fundus of the stomach, and the biopsy samples show metaplasia then you’ve hot the trifecta of symptoms to prove you have Autoimmune Metaplastic Gastric Atrophy. And that is the underlying cause of Pernicious Anaemia.

[clivealive Forum Support]

Hi kirstm85 as Portia1974 pointed out your Folate level was on the border of being deficient.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Marz]

It would be a good idea to have the FULL thyroid testing done. Your TSH does not reflect the very low FT4. When the T4 is low then the feedback loop to the Pituitary sends a message to send out more Thyroid Stimulating Hormone to the Thyroid in order for it to produce T4. Something is not working well. it would be interesting to see the FT3 result and if low in the range then this may suggest Central Hypothyroidism rather than Primary. This is when the TSH rises as the FT4 and FT3 goes lower. It would also be good to have the Thyroid Anti-bodies tested - TPO & Tg to rule out Hashimotos - also auto-immune. Sadly the NHS rarely test the FT3 and only one of the anti-bodies - TPO. And so - many people remain undiagnosed and poorly. Home Testing Kits are available through Thyroid UK - see link below. 1,000's on the Thyroid Forum test privately in order to unravel their own health issues.

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

The FT4 range is not one I am familiar with - are you in the UK ?