New Endo, New tips

[KT304]

Hi All

Posted a couple of months ago regarding some odd results and concerns with endo treatment plan at the time. I got referred by my GP to another endo closer to home (The 300 mile round trip was not worth it!) who she wanted to investigate my odd results.

A few viruses was the probable cause of my errant results, and with Seaside Susie's advise (although not followed to the latter as you can see below :-/) on dose before a blood test, my latest results were:

TSH 0.01 (0.27-4.5)

T4 10 (11-23) 24 hours after last dose

T3 7.08 (3.1-6.8) 8 hours after last dose

Current dose: T4 100mcg & T3 25mcg

New Endo insists he will not remove my T3 prescription and still wants (like the other endo) to increase my TSH "slightly" He advised to split my T3 dose to 15mcg AM, and 10mcg PM rather than all at once and he will review results in 2 months.

We also spoke about Pernicious Anemia? I advised him I was supplementing B12 and getting nowhere, and that if I fail to supplement I become almost impaired, I am unable to function mentally! Plus the pins and needles, ear heartbeat whooshes, chronic dry skin, insane itching at night. Current dose 3000 daily (jarrows) with 1 B-right and my folate and B12 just won't rise.

Endo said I have to stop supplementing and then be tested for PA, and if low results then move to injections. He said we only absorb 1% of the tablets and with my gut issues I'm possibly not absorbing anything. But I don't eat them, I stick them under my tongue so I'm unsure on that nugget of information.

I told him I was worried that I would not be able to function at work or home (study) but he said it was the only way to know what my true levels are. Has anyone ever had to stop supplements for a PA test? How did you cope?

My last Folate test showed levels: Serum folate level 3.0 ug/L [2.0 - 18.7] and B12: Serum vitamin B12 level 568 ng/L [197.0 - 771.0] (These are with supplementation)

Also told to eat gluten for a coaliac test. My being GF has waned recently, so will see what happens, get the test result and move to GF again.

We spoke about DIO2 results: I gave endo the copy of mine. Test he said is worthless. Means nothing. NHS doesn't recognise. He talked about something molecular, everyone having it, genetics not good for testing etc but I can't quote recall how it went! But he did say that he may decrease my T4 to see if that will make the TSH rise (insert eye roll) I advised that for the extra 1 person who suffers a fracture with suppressed TSH I'm not bothered if it stays where it is, and that I really need it to rise. ( I have a question on this: If I have a decreased ability to process T4, should my current 100mcg dose by doubled seeing as the result above shows a level of 10?)

Asked re Thyroidectomy as he advised my thyroid is dead. NHS won't take my thyroid out. It was an option 12 years ago before RAI but they'll just leave it in there. And then he added unless I go private and find someone who will.... For me this is a way out there option with the hashis. Last resort with no guarantee of success.

My plan:

Stop B12 and folate supplements to have this PA test. See if I get approved for injections.If I don't I either supplement forever or look at private injections.

Eat Cakes. Fat enough already so may not be the best idea!!!

Monitor thyroid results, hope that soon I move to annual check ups and do my own thing in between reviews!!!! I may increase T4 myself and monitor via BH.

K.x

[greygoose]

I really wouldn't double your dose of levo, if I were you! That's a bit drastic. But you could increase by 25 mcg if you think it will help. But, I'm afraid I don't follow your logic for increasing.

I could be wrong, but i didn't think it was necessary to stop your B12 supplement before a PA test. After all, they're not testing your level of B12, they're testing the antibodies. You might want to check about that on the Pa forum.

Why is it so important to have a Coeliac test? If you know that you feel better gluten-free, then just stay gluten-free. The Coeliac tests are notoriously unreliable, anyway.

Totally agree with you about the TSH!

[KT304 in reply to greygoose]

I’ll check out the PA forum 😊 not really enthused about spending time gripped with brain fog!

He suggested coeliac test after talking about IF. Honestly need to research IF as not very knowledgeable on this subject. Hear you on the gf.

[greygoose in reply to KT304]

Intrinsic Factor? That's got nothing to do with Coeliac. That's to do with B12 absorption.

[KT304]

I know, the conversation was about ongoing gut issues, autoimmune conditions, antibodies as well as B12 and IF. I’ve got so many symptoms of so many things they are all possibly linked, so he wants to start with the B12 and coeliac test.

I’m off to read the PA forum. 😊