First time posting here...can anyone here discuss getting a diagnosis?

[Auntbessy]

Hi, I already have hashimotos thyroiditis, but am seeking to find out whether I also have perncious anemia. The reason I am investigating this is because I have many of the symptoms and I also have a raised MCH (for at least the last 4 years). My B12 level is usually around 200 which is pretty low. The GP has never discussed my raised MCH with me. I only know about it because I have a patient access account with all my blood results.

[Nackapan]

Sounds like you right on the threshold depending on what the range and measurement is. Some are 180-900'inrange some 200-900.

If you have b12 deficiency symptoms thatss what you should go by.

Some have b12 in range and are deficient.

Have yoe tried b12 tablets or sub linguals? If si do they help symptoms . ?

You could get the intrinsic antybody test done before supplementing . If its positive you have PA . It give a diagnosis to about 5o% . If its negative it doesnt rule out you not having PA.

Or you could have b12 deficiency from diet . Or an absorbtion problem.

So many symptoms overlap .

I hope you get the blood test . It will also test your folate levels. Get it all done iron, vit d , ferritin.

There is an active b12 blood test which you would have to pay for . The NHS do the serum one which shows all b12 in your blood only a percentage is 'active' it's an indication.

If I'd known about all this I wouldve had those tests before starting injections. I was given the parietal cell antibody test that apparently isnt used for a diagnosis of PA now as too many false positives

The PAS have good fact sheets

Akso if you look under topics there are many posts

I wish you well and hope you get some answers

[fbirder]

MCH on its own doesn’t really tell us much. It means there’s more haemoglobin in the cell than usual. This can be because the cells are larger than normal (a large cell can contain more haemoglobin). If this is the case then your Mean Cell Volume (MCV) will also be raised.

Our resident expert in this field FlipperTD may be able to give a better explanation.

[FlipperTD]

I'm a scientist, not a medic, so I can't offer clinical advice, but I'm happy to comment on results, and following on from FBirder's suggestion, here goes.

Hashimotos can present with a mild macrocytic picture. This isn't necessarily related to either B12 or folate deficiency either. When macrocytosis is seen, then the red cells are bigger than normal; as they contain haemoglobin, they'll have more haemoglobin per cell than 'normal'. Hence the MCH will be higher. Typically the mature red cell is round about 33% haemoglobin by mass; (That's the MCHC, the Mean Cell Haemogobin Concentration). The MCH is derived simply from (Hb/RBC). Calculation of the MCHC uses the MCV also, from (Hb/(RBCxMCV)) but as more bits of info are incorporated, then the sensitivity of the test can be lost. MCV measurement may be susceptible to things like time from blood sample to testing, and also other things like blood sugar, so the precision was lost. As a consequence, our old favourite, the MCHC, lost its usefulness when automated blood counters were introduced, but the MCH took over because the Red Cell Count was far more precise than anything we had had before. (Microscopic red cell counts were notoriously imprecise.)

Your GP is probably focussing on the important stuff. If you haven't already, you could ask politely about why you seem to have a persistently raised MCH!

Good luck.

[Auntbessy in reply to FlipperTD]

Thanks for responding to me. Do you know which tests they need to do to diagnose PA? In my draft letter I have asked for an intrinsic factor antibody test. Thanks Rhiannon

[FlipperTD in reply to Auntbessy]

Hi. It's an easy question but it's difficult to answer!

A positive Intrinsic Factor antibody test is very helpful, but it's only positive in around 50% of cases of Pernicious Anaemia. The best test we ever had was the Schilling Test which would demonstrate that you were absorbing B12, when Intrinsic Factor was present, and you weren't when it was absent. Regrettably it's no longer available, and hasn't been for many years, but it's still mentioned in answers [like this one!]

PA is a clinical diagnosis, and as such you start with your doctor. A macrocytic anaemia is often present, and a deficiency of Vitamin B12. However, the anaemia isn't always present. It's not easy, and some of the more 'esoteric' tests reflect the body's status for Vitamin B12.

Speak to your doctor before getting involved in requesting privately provided tests. Good luck.

[Auntbessy in reply to FlipperTD]

Hi FlipperTD, my GP has agreed to do the intrinsic factor antibody test! I have to wait a few weeks for my appointment. I was wondering if you knew whether I should stop taking my B vitamins? I stopped a week ago just in case but I am just feeling so exhausted. I don't want to skew the results though!

[FlipperTD in reply to Auntbessy]

I'm not qualified to advise you on taking, or stopping taking stuff, especially if it's been prescribed by a doctor.

I realise this might not seem too helpful, but the people best able to advise you would be the ones doing the test, and if it's possible, I'd give them a ring, because in general, they'll be pleased to help. They'll be amazed that anyone would even ask such a thing, so give the laboratory a ring, because there are numerous different assay methods, and if there's any possibility of interference, I'm sure they'll want to help too.

Good luck on this.

[Jillymo]

I had private bloods done for my thyroid - when they came back I noticed my B12 was low and a Drs report saying I was bordering PA.

I took these results along to my appointments as I am seen by many specialists for various issues - but none acted upon the results.

My advice is the same as fbirder's speak to your Gp about your concern's, make a list of your symptoms and ask why you have a persistently raised MCH. Sometimes we have to pinpoint issues else they are not picked up.

I have been feeling awful of late and like yourself also have thyroid issues. My Gp has give me a loading dose of B12 because it was low - you have nothing to loose by approaching the issue.

I hope you get some help soon.

[Auntbessy in reply to Jillymo]

Hi Jillymo, out of curiosity what was your B12 level when the GP thought you were low? Its really good that they gave you a loading dose. Did you feel very different afterwards?

[Jillymo in reply to Auntbessy]

I have had to have a Dr out today because I am so off balance but whilst she was here I asked what my B12 was. ( 156 )

I dont know if that is good or bad - my MCH was apparently ok.

[Jillymo]

I dont know the level My Dr didn't tell me them ! At present I feel dreadful with the most awful dizzy spells, weakness and lethargy. I am praying the B12 injections kick in soon.

Do you think I should ask for the intrinsic antibody test to ?

[Auntbessy in reply to Jillymo]

Do you frequently have low B12? Could you get access to your blood test results through the 'patient info' website? That's how I found out about my raised MCH. Might be worth doing this first and seeing if there is a pattern of B12 deficiency over time? I know Pernicious Anemia is supposed to be very common amongst Hashimotos sufferers.

[Jillymo in reply to Auntbessy]

I have so may things wrong at the moment I honestly do not know where to start. I had private bloods taken a couple of years ago which stated I was heading for PA but my consultants took no notice.

I have both thyroid and parathyroid issues. My thyroxine has been dropped from 150mcg to just 50 so as you can imagine my body at present is in turmoil.

I am unable to think straight or function at the moment - hoping Dr will ring me today. I need to know the cause.

If she doesn't do a intrinsic test I will get it done privately.