Why am I not getting better post thyroidectomy? TSH <1.

[Meanbeannyc]

I’m on 112/5 T3 and tsh sits around 0.6.

(Huge dose for my weight if basing on 1.6xkg).

Why do I feel so bad all the time?

I’m exhausted, my muscles are in so much pain, I’m ice cold. I was sitting on a beach in 95 degree weather last week wrapped up in a blanket towel. Why am I not getting better. Will provide recent labs upon request. Labs in history. Why can’t anyone help me?

[SlowDragon Administrator]

As per previous post

healthunlocked.com/thyroidu....

Vitamins must be optimal

Vitamin D and ferritin were too low

No folate or B12 results

Probably need increase in T3 to 2 x 5mcg

Strictly gluten free diet likely to help or be essential

[pennyannie]

Hello Meanbeannyc :

I've had a lookback, and just want to ask have you tried Natural Desicated Thyroid. ?

After a thyroidectomy you will be " missing " trace elements of T1. T2 and calcitonin, plus a measure of T3 said to be at about 10mcg a day plus a measure of T4 said to be at around 100 mcg daily.

Have I read it right, you are only on 5 mcg T3 ?

I had RAI for Graves in 2005 which eventually my burnt out thyroid which disintegrated leaving me very poorly and it was as though T4 - Levothyroxine just stopped working for me and my pilot light went " out ' .

I was on 125 mcg T4 which gave me a TSH of 0.01 and " told off " and my dose cut back, so to keep me " in the range ' and guidelines :

This caused me worse symptoms but when I queried this I was given anti depressants as a consolation prize, and I ended up housebound, looking for my own answers, and thank goodness found Thyroid uk and this amazing forum.

I have had to self medicate and buy my own thyroid hormone replacement in order to get better and stay away from the mainstream medical as staying within the guidelines and rules and regulations didn't work well for me.

I was able to reignite " my pilot light " by adding in some T3 to my T4 :

I dropped my T4 down to 100mcg and added 6.25 T3 :

I then increased T3 too much and made myself unwell :

I returned to T4 only and took my dose back up to 125mcg and then 137.50 - but it didn't impove my T3 - which fell further down the range and I lived with a massive headache:

I then tried NDT - and found this much softer on my body and easier to manage.

I'm now 3 + years on and am only on 1+ 1/2 grains so if you can equate synthetics to " Natural " thyroid hormone replacement taking 57 T4 + 13.50 T3 :

I am not really interested in blood test results, I now just get a yearly full thyroid blood panel more to check my vitamins and minerals than anything else as my TSH is always 0,01 and my T3 high in range whilst my T4 is low in range and that seems to suit me best.

I know I wouldn't have trusted myself to go this low with T4 if I was self medicating with a synthetic T3/T4 combo - but now think if I have to try synthetics again, I may now have a better starting point from which to work up or down from.

[shaws Administrator]

It could be that you are not on the correct dose of thyroid hormone replacements and the following link might be helpful for you, although the doctor she consulted with has now died .

dailyrecord.co.uk/news/real...

Some specialists take more notice of a blood test result and seem to be unaware of disabling clinical symptoms if we're not on the correct thyroid hormone replacements that the Association has gradually removed altogether, without any consultations with patients who took them.

There used to be T3 (liothyronine -(the active thyroid hormone) and brain and heart have the most T3 receptor cells .T3 became too costly.

NDT (natural dessicated thyroid hormones) contains all of the hormones a healthy gland would have. It was given to all thyroid patients from 1892 onwards but stopped a couple of years ago again without notice to patients who were desperate.

A number of professionals seem to not to care at all about relieving clinical symptoms but willing give anti-depressants or anything but a decent dose of thyroid hormone replacements..