A tale of two doctors!

[sarahstevo1974]

Hi All, hope everyone is keeping safe

I had a telephone app today with my GP surgery, my usual Dr (male) (no u can’t have an increase, results are fine and somewhere in range) was not available, so spoke to another more sympathetic Dr (female) who last year agreed to 2 dose increases, (Levo) yey!! Thanks to that feeling loads better thyroid related, anyway the point of the app was I’m still feeling dizzy everyday so I have asked can u test B12 and intrinsic factor?? Was totally expecting a big fat NO......but she agreed to both along with folate, ferritin & vit d 😲

Now my problem is, since I have been refused these tests on numerous occasions, I have been supplementing B12 & B Complex with folate (3 weeks), what is the best course of action now? Do I wait a few weeks and not take supplements or do I risk an “in range, All is fine result”?

Advice much appreciated 😁

[greygoose]

You'd have to come off them for 5 months to get a baseline, I'm afraid. Once you're on B vits, there's not much else you can do about it. Did you ever have them tested?

[sarahstevo1974 in reply to greygoose]

Hi,

Had B12 tested back in 2017, was low in range 236 (180-914) and all attempts for further testing were denied, so I started supplementing 3 weeks ago, at first just 1000mcg B12 then upped to 5000mcg, along with B complex and now (sods law) different GP decides to do testing!

[greygoose in reply to sarahstevo1974]

OK, so in that case, they wouldn't have tested your for Pernicious Anemia, anyway.

So, you've got your baseline, and now you can see how you're doing on the supplement. Personally, I would have started on 5000 mcg to begin with. Then gone on to 1000 mcg as a maintenance dose - always with a B complex as well. Your test results will tell you if you need to continue on 5000 mcg or go down again to 1000 again. Although if it's only three weeks, things probably haven't changed very much. So, nothing much lost, even if nothing much gained.

And, as SlowDragon says, you do need to leave off the B complex for a week before the blood draw, but I think that, personally, I'd continue with the B12/B complex until then. Not much to be gained by stopping them now.

[sarahstevo1974 in reply to greygoose]

Hi, TBH I was a little cautious starting on 1000mcg but after advice on here I upped to 5000mcg, along with the B complex, I am going to stop both for 7 days then have the tests, and as you said I have a baseline B12 so at least I can see if that has improved, and hopefully the intrinsic factor test will/will not rule out PA, just wish I could have got Dr to agree to tests before starting supplements 🤨

As always appreciate your responses and advice!

Will post results when I get them

[SlowDragon Administrator]

Well you need to ALWAYS stop vitamin B complex roughly a week before any blood tests

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Suggest you wait at least 2-3 weeks...but B12 can take weeks to drop to pre supplement levels

[sarahstevo1974 in reply to SlowDragon]

Hi, this is what I was afraid of, been trying for 3 years to get further tests and shot down in flames every time! Now different Dr, and hey presto a big fat YES!

So I’m thinking I will just get the test in a few weeks time, leaving off supplements just to see if it’s made any difference, save me a few quid on medichecks! Which I was planning end of July

Thanks for your response 😁

[Marz in reply to sarahstevo1974]

Once you are supplementing B12 your results will be skewed ! The results show you the amount of B12 circulating and not the amount in your cells where it is needed. Testing MMA and Homocysteine - if raised - can indicate low levels in the cells. Rarely tested in the NHS.

Testing anti-bodies for PA can produce false negatives. When you have your results with ranges start a new post and people will help.

[Redlester in reply to Marz]

What is MMA? And do you know at all where can you get the best private test for homocysteine - is it the York labs one?

[helvella Administrator Thyroid UK in reply to Redlester]

Abbreviations and Acronyms

Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear here regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being too waylaid by the many irrelevant possibilities web searches tend to return.

I continue to update the document quite frequently!

dropbox.com/s/2423slilh0or6...

If you have not downloaded a copy for some time, perhaps months or years :-), I suggest you download a new copy.

Please, if you think there is anything missing or wrong, let me know. Post on the forum or send a Private Message.

MMA = methylmalonic acid

[Redlester in reply to helvella]

Thanks Helvella - I now know what the acronym stands for and have saved a copy

[Marz in reply to Redlester]

Methyl Malonic Acid. Sorry have not had Hcy tested in the UK - had it done in Greece where it is considered routine. If you have found one I'm sure it will be fine.

[Redlester in reply to Marz]

Thanks Marz - I know what the acronym stands for but in 20 years of researching this is the first time I have come across MMA! Always learning on this forum!!

[Marz in reply to Redlester]

Me too !