husbands blood results suggestive of PA?

[gillsie]

My husband suffers from psoriasis, has had Hodgekins lymphoma in past with stem cell transplant and chemo, has underactive thyroid, sarcoidosis of the lungs, heart attack and by pass surgery. Now he is fatigued, depressed, forgetful and his blood results show B12 at 253 (180-1000) Folate at 4.7 (>4) serrum ferritin 66 (25-300) MCV 100.2 (80-100) Red cell count 4.49 (4.5 - 6.5) MCH 32.7 (27-32) and some of his white cell counts are low. Doctor will not test for PA until B12 falls below 150. I started him on oral B12 and folate - but should I do this? I was misdiagnosed for years with PA and know the consequences. I worry given his history of auto immune disease that he will deteriorate if I do not get this sorted. I am considering a private test with Blue Horizon but need to know should I stop the oral supplements in case they skew the antibody test.

[Marz]

Sorry to read of the many issues your husband is coping with. There are many good people on this forum who will give advice regarding the PA. I believe you do not have to stop taking B12 if your have the Private Active B12 test.

I am wondering if your husband has Hashimotos - auto-immune thyroid as auto-immune issues often come along together. Am wondering if he is being optimally treated for his thyroid. If you have some recent results with ranges I may be able to help. I have Hashimotos and Low B12. I cannot believe your GP will not test for PA until his B12 is below the range and you are right to be aware of the consequences. Taking B12 supplements will not affect the antibodies for PA - I have read . As you probably know only around 20% of the test result is available to be utilised in the cells - where the B12 is needed.....

VitD is also quite important with various health issues - so may be worth testing.

grassrootshealth.net

[Sleepybunny]

"Doctor will not test for PA until B12 falls below 150."

I'm surprised by this especially as his MCV and MCH are raised, suggesting the possibility of macrocytosis. Has the GP explained why he/she thinks the MCV and MCh are raised? Is there another GP you can see? Have you spoken to the PAS who may be able to pint you to helpful information? My understanding is that patients shoudl be tested if they are symptomatic whatever their B12 levels.

pernicious-anaemia-society....

01656 769467

Open every day except Sundays. Some changes over Christmas.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

patient.info/doctor/full-bl...

patient.info/doctor/folate-...

Important information in Management section.

This link gives examples of letters to write to GP if unhappy with treatment.

b12deficiency.info/b12-writ...

Has your husband ever had a "blood smear" aka "blood film"?

A blood smear can show changes in the shape of blood cells. B12 deficiency can cause changes in red blood cells and also hypersegmented neutrophils. As far as I know it is not often used in the diagnosis of B12 deficiency in the NHS but is available privately.

patient.info/health/full-bl...

patient.info/doctor/periphe...

My understanding of recent documents and articles is that a patient who is symptomatic for B12 deficiency should be treated even if B12 levels are "normal" range.

Has the GP seen the following documents?

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

This is a long document that came out in 2014 and some GPs and consultants may not be aware of it. I was told that the NHS should be following it in my area. I gave a copy to my GP. The PAS (Pernicious Anameia society) have a summary of the document in their library section on website.

Testing...some useful links

active-b12.com/frequently-a...

b12deficiency.info/b12-test...

Sadly autoimmune diseases can come in clusters so I'm surprised his GP is not taking the possibility of PA more seriously.

My own perspective on self treatment is that I felt forced to as a very last resort because I could not get treatment on NHS, all my tests came back negative although highly symptomatic. The downside is that I feel it is now impossible for me to get a diagnosis from NHS as doctors just point out my high B12 levels rather than looking at my symptoms. Without an NHS diagnosis I face a lifetime of having to pay for B12 and I seem to need a lot so I am scared that at some point I will not be able to afford to.

I do wonder whether I should have let myself deteriorate further although this would have meant the loss of my job and probably the loss of my relationship. Without a confirmed diagnosis, it is me saying I have PA?B12 defic not the NHS and not everyone believes me.

Good luck with finding answers for your husband.

You may find it interesting to look into MTHFR gene mutations.

Each area of the UK has its own local guidelines for B12 deficiency management. Some of these have not been updated since the BCSH Cobalamin and folate Guidelines came out. Some of them differ from BNF (British national formulary) guidance as well.

I found it interesting to look up my local guidelines. I now understand why some of my previous treatment was a bit different to what I expected. The local guidelines can be found by an internet serach, a search on local NHS website or an FOI (Freedom of information) request to local NHS website.

[Sleepybunny in reply to Sleepybunny]

I am not a medic just a patient who has struggled to get a diagnosis and wants people to have the information they need.

[fbirder]

SB may not be a doctor, but she is spot on here.

Your red cell count is below normal and your MCV and MCH are above the normnal range - which is an indicator for macrocytic anaemia (macrocytic = large cells) - which is caused by B12 or folate deficiency.

Your doctor need to explain these results. But I'll bet they say "Well, they're only just outside the normal range", whereas you'll never hear a doctor say "Well, it's only just inside the normal range" when talking about B12.

[gillsie]

Thank you to all those replying . I will be showing these to my husband and trying to get him to be more proactive . This forum is such a blessing.

[Sleepybunny]

Has your husband ever had an MMA, Homocysteine or Active B12 test?

These tests can be helpful in diagnosing B12 deficiency. Some of the tests may be affected if a patient is already supplementing with B12.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...