Advice before endo trip please - Pernicious Anaemi...

Pernicious Anaemia Society

31,973 members23,121 posts

Advice before endo trip please

Sugaru profile image
8 Replies

Off to endo after blood test. I am on 100 mcg Levo and had my blood tested by blue horizon. Thyroid antibodies came back red as expected but also b12 of 149. Doctor retested antibodies still red but b12 serum b12 241 which looked like it was in their range. Hospital have requested further test and I go for appt next week. I am afraid they will say it's fine. I have terrible insomnia, memory has been really worrying me and I ha stiff joints particularly in feet in morning. Nails are full of ridges. I am 55 but had pcos also. Any advice how I deal with suggestion that it is ok as I am anticipating the worst!

Written by
Sugaru profile image
Sugaru
To view profiles and participate in discussions please or .
Read more about...
8 Replies
Leothelion profile image
Leothelion

Hi, I'm no expert but the thyroid needs about a level of 900/1000 of B12 to work, you need injections, mine were 233 and I had other symptoms, also I'm on 3 weekly injections too, & I take 75/75/100 Levo alternate days, please get your folate and ferritin checked too, also vitamin D, with all co factors being at the right levels you will feel better ..

fbirder profile image
fbirder in reply to Leothelion

the thyroid needs about a level of 900/1000 of B12 to work,

That seems very high. Do you have a reference for it?

Sugaru profile image
Sugaru in reply to fbirder

I'm sorry what seems high?

fbirder profile image
fbirder in reply to Sugaru

I'm sorry what seems high?

A minimum B12 level of 900 for a working thyroid. That seems a ridiculously high value. I can't find data, but that would almost certainly mean the vast majority of the human race doesn't have a working thyroid.

I'd like to know the source of this information.

Leothelion profile image
Leothelion in reply to fbirder

I read it on the thyroid group, in saying that since having injections of B12d which is 1000 my thyroid medications decreased from 100mcg,

fbirder profile image
fbirder in reply to Leothelion

The injections are 1000 ug. That isn't the same as having blood levels of 1000.

Sugaru profile image
Sugaru in reply to fbirder

I've just looked at the reference range on my doctors results and it seems they are regarding >130 ng/ l as normal range so my 241 isn't considered a problem the thyroid antibodies are the ones that are high so presumably that is what the endo is supposed to be looking at.

I took my Blue Horizon blood test results to the Endo. They did at least look at them, kept it and I presume, put in with my notes.

I'd also print the B12 deficiency symptom list from here and mark all the ones that apply to you.

There is a similar one for thyroid deficiency.

Also write questions you want to ask.

Hope your drs are bit more proactive than any I've met since I've lived in Devon!

You may also like...

Advice before apt with doctor tomorrow please?!

not give me the injection without checking my B12. The B12 level has come back as 'normal' so they...

B12 neuro symptoms appear worse Advice before GP appointment please

My thyroid test a few weeks ago was Serum free T4 level 14.4pmol/L range (10.6 -23.2) Serum THS...

Advice Please on B12 injections before and after COVID vaccination

become quite unwell. I also have gluten intolerance, and very ill when gluten. also athropic...

IFA negative, Low Active B12 - advice please.

was also concerned about my B12 but was told they were unable to do any further tests as my serum...

some advice needed please

help and give us enough B12 !! Blood test results from October 2023 I tested positive for Gastric...