Blood results

[mummytina]

Have had my blood test result back and was told by the receptionist thaat I wouldn't be needing anymore B12 injections when I thought they were for life, was alos told that my thyroid was normal when 4 weeks ago it was 17.16, can this be right, I am so confused please help!!!!

[nostoneunturned]

Hi, mummytina, about the B12 injections, as you have been diagnosed with Pernicious Anaemia you are right, you will need the injections for life, at regular intervals, and any doctor who stops them does not know what he is doing.

As you have PA you will not be able to absorb B12 from food in the stomach therefore your level of B12, which has presumably been replenished by the 6 loading doses you will have had, wiil sink to low levels again if the injections of B12 are stopped. They must not be stopped.

At a minimum you should be having an injection of hydroxycobalamin every three months, and if you are one of the lucky ones that will suffice, although many people find that 3 months is too long. If they are lucky enough to have a caring doctor then the interval will be shortened to 10 weeks, even 8 weeks, but too many people find they can not persuade their doctors to give the injection more frequently than the 3 month interval which figures in one part of the British National Formulary.

Here is the relevant part: British National Formulary, section 9.1.2. Hydroxocobalamin

Dose

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 time a weel for 2 weeks then 1 mg every three

months.

Pernicious anaemia and other macrocytic anaemias with neurological invovement, initially 1 mg on alternate days until no further improvement then 1 mg every 2 months.

You can consult the BNF online at bnf.org register/sign in as directed, go to section 9.1.2 Drugs used in megaloblastic anaemias and you will have half an hour to read and print out what you need.

I wish you all the best with this, and joining the PAS will help greatly, giving you access to the helpline. You will find from reading the blogs etc of PAS chairman, Martyn Hooper, that he has encountered the proposed stopping of injections "because you have enough B12" more than once.

Regarding your thyroid, we need the results plus ranges to try to help you. You do not say what was 17.6, for instance - TSH?

[mummytina in reply to nostoneunturned]

Sorry yes that was tsh, they never tested me for T3 but my T4 was10.6 pmol/L (6.3 - 14.0) and my TPO antibodies is <33 iu/mL (0.0 - 60.0).

Hope this helps

[nostoneunturned in reply to mummytina]

Hi, mummytina, it might be better to post your thyroid problems (results plus ranges) on the Thyroid UK side of HU. Meantime you could read up on Hashimoto's, which might be the explanation for your variations - but I am not a doctor - on this link.

stopthethyroidmadness.com/h...

I think that your doctor should have done the antibodies to thyroglobulin as well as the thyroid peroxidase antobodies for it explains in the link that one set can be high and the other low, also you'll read that the T3 needs to be done, all this gives a more complete picture.

If I am correct, your doctor is floundering, and if I had these problems I think that I would be pushing to be referred to an endocrinologist for the thyroid, and a haematologist if your B12 is in fact stopped because as you know,you are right, once you are diagnosed with PA the injections are for life.

[mummytina in reply to nostoneunturned]

Well I went to the Doctors this morning to talk about my results and he is referring me to an Endocrinologist at last. He is very confused as to why my TSH level has now gone down to 1.4 from 17.16 in 4 weeks. He is now lowering my Levothyroxine from 150mcg to 100mcg and then I have to have it tested again in 4 weeks when I have another B12 test.

Apparently another "Dr" looked at the results of my B12 and said that "I didnt need them anymore" but my regular Dr told me that I would need the injections for life and he doesnt know why she said this.

Just have to wait for the appointment and hopefully will be able to sort this out once and for all.

[nostoneunturned in reply to mummytina]

I am so glad that you are going to an endocrinologis for your doctor is obviously puzzled.

I really do not understand why he is lowering your levo at all as it seems to me that the lowering of the TSH is a good thing, after all we usually feel best at TSH of 1, or less, as a general rule.

A drop of 50mcg in a dose of 150mcg is a really big drop and will probably be followed by a rise again in TSH - I think, though not a doctor. Wonder why if he feels it needs lowering (debateable, but the endo will take charge thank goodness) it is not being lowered by say 25mcg for four weeks then test?

I wish you the very best of outcomes on seeing the endocrinologist, and I am also very glad you are assured the B12 injections will continue.

We look forward to hearing what the outcome of the endo's involvement is.

[mummytina in reply to nostoneunturned]

Thanks for all your help and I'm so glad I found this forum it has been a great help in making me determined to insist on see an endo.

Will let you know the outcome.

Thanks again