Help, please, post rather befuddled visit to GP.

[Cinnamon]

Intrinsic factor was negative (what are other reasons for B12 deficiency?); TSH down to 0.12 (agreed to do 25ug and 50ug on alternate days, down from straight 50ug, as at last measure it was 0.45); FT4 at 21 which is top end of range. Also had LH and FSH measured (as periods had re-appeared after none for a year) and she said I'm definitely in the menopause. Have been feeling more tired in last couple of weeks, but thought that was down to child being off school for summer and dog waking up early. Any thoughts/help/comments much appreciated.

[Hidden]

My first thought is - how often are you having your B12 injections? Not very many people can get by on the standard 3 monthly regime. When you have more than one medical condition it's best to keep a symptom diary, that way you might see a pattern. I have my injections every 2 weeks for example, some people need to stay on 3 a week permanently, yet others will be quite happy on 2 or 3 monthly.

The second thing I wanted to say was just because you test negative for IF antibodies doesn't mean you don't have PA. From this article:

patient.co.uk/doctor/Pernic...

"Autoantibody screen: intrinsic factor antibodies, if present, are virtually diagnostic of pernicious anaemia. However, they are absent in 50% of patients with pernicious anaemia. Gastric parietal-cell antibodies are present in 85% of people with pernicious anaemia but are also found in 3-10% of people who do not have pernicious anaemia."

Did you also have the parietal cell antibody test? If you have a copy of the book "Could It be B12?" one of the Appendices at the back lists all the possible reasons for B12 deficiency. It's 2 pages long as far as I remember. Just make sure that the doc doesn't use your IF antibody test result to stop your treatment, it is only useful diagnostically if it is positive.

H x

[Cinnamon in reply to Hidden]

Hi, B12 -- had the first six in May and have my next one in a week. I've actually been feeling quite good until the past few weeks. GP doesn't seem inclined to stop my injections. I suggested the alternate day levo thing, which is what the endo I saw a few months ago suggested if my TSH went too low. I will have a look at the article you mention and give it to GP. See where that gets me...

[Hidden in reply to Cinnamon]

So basically, you're on 3 monthly but it sounds like 2 monthly just might be the tweak you need? Some doctors don't like to budge from the 3 monthly regime, but there is no reason for them to be so inflexible. The BNF allows them to treat more frequently if there is neuro symptoms (and most everyone has these on diagnosis), guidelines found here under "Dose":

evidence.nhs.uk/formulary/b...

Just quote the BNF section 9.1.2 to him, that's what I did

Also, you must make sure your folate and iron are at good levels. Do you know what these are?

[Cinnamon in reply to Hidden]

I think I need to see how I feel on the 25/50 levo alternate days regime post the B12 injection (next Friday). If I find I am feeling chirpier, I will definitely bring in all the info and see about every two months rather than three for the B12. I am due bloods again in three months, so will ask that folate and iron be added to those. My GP is now pretty responsive to any info I bring in for her to read. But, like many diagnosed hypo with associated autoimmune issues, things are never straight-forward.

[Hidden in reply to Cinnamon]

Ok, cool, good plan. You might find a read of this thread useful in the meantime:

pernicious-anaemia-society....