Not tolerating thyroid medications , tried t4 , t3 and ndt as well as cow thyroid , ready to give up completely

[Rhannii7]

Hello All, back again. I recently had and increase of ndt and the muscle pain and joint pain are hiddeous, doesn't matter which meds I try none of them work, cant get within range without terrible side effects.

[pennyannie]

Hello Rhannii:

On your bio it details RAI - so do you have Graves Disease and when did you have RAI thyroid ablation ?

RAI is a slow burn but ultimately your thyroid will b totally burnt out by this toxic substance and you will likely feel better of full spectrum thyroid hormone - which is where you are now.

I too am post RAI thyroid ablation for Graves and taking NDT - pig thyroid - and find it suits me best and self medicating :

I also need to maintain ferritin, folate, B12 and vitamin D at optimal levels and also take adrenal glandular as I read the RAI is also taken up ( to a lesser extent ) by other glands and organs in the body which includes the adrenal gland.

There are no ranges when treating with NDT - this is the original treatment for hypothyroidism and widely and successfully used for over 100 years and long before we knew about TSH, T3 or T4 - ranges, guidelines and or blood tests.

You dose to the relief of symptoms and once my vitamins and minerals were all optimal I went up in 1/4 grain increments weekly and monitored my pulse, blood pressure and temperature as a twice daily record so I could monitor any physical changes.

If, when, you get to 2 grains you then hold that dose for 6-8 weeks allowing it to settle in and then run a blood test to compare with bench mark readings of Free T3 and Free T4 .

Your TSH will likely be low suppressed and that's ok :

Your T4 may be lower than when on T4 monotherapy and that's ok :

BUT your T3 which is the most important reading and what you track on should be proportionately much higher than when on T4 monotherapy.

If it is not and you still have all the symptoms possible NDT is not the best option for you to be taking.

If ok at 2 grains but still with symptoms just keep slowly inching up the dose by 1/4 grains :

There comes a week when you feel you have gone a bit backwards and maybe just uncomfortable in your body and a bit edgey, so drop down to the previous weeks dose and that's your dose on NDT at that point in time.

I've been on the same dose since trialling NDT some 6 years ago :

Is this way you tried NDT - it is a slow build and the benefits continue long after you are on the dose that suits you best.

If you wish to read around Graves - the Elaine Moore Graves Disease Foundation website was the most well rounded of all I found - Graves is a poorly understood and badly treated auto immune disease and it has helped me better to understand where I am in all this and just deeply regret I didn't know enough back in 2005 to advocate for myself as I was well on the AT drug and if given a choice would have stayed on this treatment option long term.

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

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

elaine-moore.com

[Lalatoot]

Rhannii I agree with pennyannie . You need to start low and increase very slowly. I have to take several low doses over the day as taking one big dose makes me feel ill.

It is usual to have symptoms still until you are on the right dose for you and the body has had time to adjust to the changes.

[SlowDragon Administrator]

Looking at previous posts

Dose has been chopped and changed far to extremely and too often

We have to change dose EXTREMELY slowly, especially if adding T3

[Hidden in reply to SlowDragon]

Rhannii7 as Slow Dragon says your dosing looks like it’s the problem, not you!

“The Endo put me on 20mcg of lio at bedtime”

I had a thyroid specialist put me on 25mcg T3 as a starting dose and I was actively, unrelentingly suicidal. My Mum had to nurse me back to health, I couldn’t even sit up straight. A starting dose of 20mcg would send me into a severe spiral! I know what it’s like to be given T3 by a “progressive” doctor who appears to know more than the clueless GPs, but sometimes they don’t understand T3 well enough to be prescribing it. I know it’s so overwhelming and miserable doing it slowly, but it really appears that going low and slow will make the difference for you, it certainly has for me 🙂

[Jaydee1507 Administrator]

I know it genuinely feels like you can't tolerate thyroid meds BUT it's just a question of getting the protocol right. Get low vitamin levels OPTIMAL and start low and slow. I promise you this does work, just your doctors have been a bit too gung ho, sadly they don't understand the best way to get their patients well. Try again with the basics in place.

[Ari3]

have u checked all your vitamins and how is your sleep and stress levels ?