Hi, I am new to this group and would love some of your wonderful help.
Background
Saw a good private endocrinologist because I was feeling cold etc. May 2016. (I am no longer covered for private health care and cannot afford to pay).
May 2016
Results before starting levothyroxine
F4 10.4
T3 3.03
TSH 1.61
He started me on 50ug daily and also 200mg ferrous sulphate
Aug 2016
On 50ug results
T4 12.4
T3 4.2
TSH 0.9
So he increased to 75ug daily
Nov 2016
On 75ug daily
T4 13.4
T3 4.2
TSH 0.7
So he increased to 100ug daily
Feb 2017
On 100ug daily
T4 16
T3 3.8
TSH 0.2
Happy so he left dose unchanged
July 2017
Continuing on 100ug daily
T4 16.2
T3 3.5
TSH 0.3
Happy so left dose unchanged and said to continue on this dose ongoing.
Said he didn't need to see me again as stable nicely euthyroid and I have been looked after by NHS GPs since then.
Jump forward, I stupidly gradually reduced my dose thinking I could wean myself of levothyroxine not understanding anything about hypothyroidism. I have osteoporosis and read something bad about levothyroxine and bones which I now now is mistaken. Beginning of 2020 I got breast cancer and I have been preoccupied with that.
For the last couple of years, I have only been taking 50ug for four days a week and 75ug for three days a week. I have been feeling increasingly tired and wiped out but I have been blaming it on other conditions. Now I am wondering if it is thyroid related.
March 2023
Complaining about fatigue my breast oncologist did lots of blood tests including thyroid.
T4 11.9
T3 4.9
TSH 1.42
(I took levothyroxine on morning of blood tests).
Vit D 123 (50 - 200)
April 2023
NHS GP only tested TSH and said I was fine.
TSH 1.49
I said I wanted to increase dosage explaining my previous mistake in reducing but now she doesn't want me to. I was assertive and said I was increasing to 75ug daily so she reluctantly agreed and said I needed to be tested in 6 - 8 weeks time. I obviously want to increase to 100ug because I felt great on that dosage.
Meanwhile had cortisol tested. All blood tests taken at 9am
April 2023
700 (range 170 - 490)
May 2023
801 (range 170 - 490)
July 2023
729 (range 170 - 490)
As you can see, I have high cortisol and have been referred to NHS endocrinologist. This long awaited appointment is happening on 10th August.
I want to be fully prepared and know what to ask etc. and would really appreciate any help you could give. Could my high cortisol be caused by my hypothyroidism being under treated? It was tested back in 2016 and it was fine. I have been reading your posts and am so impressed by your knowledge and also your kindness.
I have probably left things out but I am so tired and my brain is so foggy!
Many thanks
Katy