anyone else struggling with high levels on medication?

[Carinagravesdisease]

just wondering if anyone else struggling with high levels on medication?

been going on for years- since diagnosed in 2019. Takes forever to get back to relative normality each time.

On carbimaxole and propanolol was 10mg BD but increased to 20mg as despite taking medication , t4 now 68.9, t3 25.4.

just don’t get it! Also started HRT 2 months ago, had some weird allergic reaction all of a sudden with rash and facial swelling ?? Take anti histamine they said! Literally feel I am falling apart..

I am awaiting radio active iodine treatment but in the meantime any suggestion to just keep it together?

[pennyannie]

Hello Carina and welcome to the forum :

Graves is an Auto Immune disease for which there is no cure:

All the Anti Thyroid drug does - either Carbimazole or PTU does - is ' buy you time -

while we wait for your immune system to calm back down again and your thyroid revert to normal function without the need for any medications.

If your immune system is still raging and as it reads, have you been offered Block and Replace whereby a larger dose of the AT drug is prescribed thereby fully blocking your new own daily thyroid production BUT a measured dose of T4 is also prescribed so your T3 and T4 do not go on this roller coaster of a ride and remain somewhat stable within the ranges ?

We do now have some research you might like to read :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

I was diagnosed Graves back in 2004 and had RAI thyroid ablation the following year -

I knew nothing then and in a state of shock just followed mainstream medical advice -

I deeply regret this treatment option and found the most most well rounded of all the research I undertook - though around 8/10 years on from treatment - that of Elaine Moore's books and website - elaine-moore.com

Details on my profile page if interested - just press the icon alongside my name :

[PurpleNails Administrator]

Are you taking 20mg x2 per day of carbimazole?

How long have you been on current dose?

If your levels are still high your dose might need adjustment. HRT can affect levels.

40 - 60mg is a blocking level. It would be unusual for this level of dose not to lower levels.

Have you heard of block & replace? Block all function and add a replacement. This stabilises difficult to control levels.

Important to test 6 weekly when adjusting doses. Once you have a consistent stable level you can been tested 12 weekly. Have you been monitored closely enough?

FT4 & FT4 should be used to tweak doses - TSH is not reliable.

You mention flares, do you mean unexpected rise in levels or fluctuations? Is the medication being stopped & restarted, or has treatment been continuous?

Most do well with longer term low dose, when doctors try to stop treatment relapses are more likely. Doctors view RAI treatment and discharge to primary care to manage replacement a more straightforward option.

Majority do well but some have struggles. Ensure a full thyroid function, antibodies & key nutrients are taken prior to RAI. This will help pick up any deficiencies. Optimal nutrients will help tolerate replacement T4 and help ensure conversion to T3.