Seeing diabetes specialist (endo) for thyroid medication 🙄

[birkie]

I posted a few days ago about my anxiety on this endo appointment on Dec 27th, firstly she's a diabetes specialist says at the top of the letter.... Specialist in diabetes and endocrine system 🙄.As I posted I saw a parathyroid surgeon in Liverpool who as now diagnosed me with primary hyperparathyroidism, but as I said she also did thyroid bloods, of which I as unaware.

This is how it went... I took my 10 micrograms T3 (Roma) at 4.45am.....bloods taken at around 10. 45am.

Surgeon noted my T3 was (11.4) over medicated as she said.

I informed her of the 4.45am ingestion 10 micrograms and she said "I wouldn't have expected to see such a high level of T3 still in the blood stream after 10 micrograms" ( 6hrs).

So I'm going to see this endo and I'm thinking.... If, and it's only a if.. She actually takes my blood.. (which I'll be surprised) as she never as😠

Should I perform the same test... Take my T3 10 micrograms at 5am.. Hope she does bloods, then see the results?

1, if the results are the same.. My T3 is over range like the 11.4 what does this mean?

1, if its in range then maby the test in Liverpool was a dud... But I doubt it.

3, should I be given futher blood tests under a controlled situation, like I take the T3 then have my blood checked at intervals to see the effects of the T3 in my blood stream?

Now I know number 3 probably wouldn't register with the endo😂 who will no doubt try to gaslight me AGAIN by trying me on different thyroid medication (synthetic) , which she as since 2019 with no good results in making me euthyroid (full thyroidectomy 2019 ).

I am going to ask for NDT.. 🙏😂😂😂 But not going to keep my hopes up, but as I posted previously if the appointment goes Pete tong I'm just going to walk out and complain to PALs. 👍

[Hectorsmum2]

If you take the T3 before the test it will squew the results. Leave 24hours before blood draw.

[Zephyrbear in reply to Hectorsmum2]

The 24 hour gap is recommended for T4 (levothyroxine). For T3 (Liothyronine) the recommended gap is 12 hours.

[birkie in reply to Zephyrbear]

But the point the specialist in Liverpool was making was the 6 hour gap from 5am ingestion of only 10 micrograms and it being 11.4 at blood draw at 10.45, I would be taking my next 10 micrograms at 12 when my T3 is already high at 10.45 thus pushing the t3 even higher.She is concerned about my daily dose during the day, it was only 10 micrograms T3 and it was high after 6hrs🤷‍♀️

[McPammy]

I get my bloods done with taking my meds to ensure it doesn’t go over the levels. I’ve also done the bloods without to ensure my levels don’t go too low. That’s the only way I know if I’m taking the right amounts. I doubt they’ll prescribe NDT for you but you never know. Sounds like you need to reduce your T3 medication really. The aim is to get your TSH mimic a healthy persons of around 1.00 which means in range T4 and T3 levels too.

[birkie in reply to McPammy]

Well first I'm only on 20 micrograms spilt 10,10..its such a small dose, plus 6 hrs after I ingested 10, my T3 was still 11.4...over medicated 🤷‍♀️ then I take the next 10 when my T3 is clearly already over... This is the dilemma.History recently : full thyroidectomy 2019 due to graves thyrotoxicosis.

Recent F18 pet scan as flagged up a mass of 14 x 7 x 21mm at the right thyroid bed, report.. thyroid tissue.

Says.. looks benign.

I've struggled tremendously with both T4, T3 due to stomach /gut issues diarrhea, cramping, inflammation ongoing.. (colitis /lactose intolorent) been on all the T4s, tables liquid lactose free same with the T3 nothing as worked since thyroidectomy, I've been on Roma T3 for over a year now and this mass was not picked up in 2022 after a private US scan, only anomalie found was on the left with a nodule of 6/7mm next to my laryngeal nerve (now diagnosed with primary hyperparathyroidism) hence the scan.

So this mass as grown in one year along with me taking the Roma T3, I've never reached euthyroid, I'm either under medicated or over medicated, no amount of medication change as worked.

So could this mass which is thyroid tissue be acting like my graves? Because I always feel hyper, sweating, tremors, shaking, runny stools, exhausted, insomnia, and I know what hyper feels like.

I'm getting no where with the medical establishment, they just keep chopping and changing from T3 to T4 hoping to get a different out come it's not working. 😢

And when I was diagnosed with hyperthyroidism I was put on anti thyroid drugs which acted in the same way on my stomach /gut.. diarrhea, cramps, inflammation, noted on a scan on admission into hospital in thyroid storm, they wouldn't believe me the anti thyroid drug was causing the stomach /gut issues and gave me anti thyroid drugs, I immediately threw it back and soiled the bed😩 so embarrassed, they did the scan and concluded it was indeed the anti thyroid drug, only option thyroidectomy 🤷‍♀️.