Hi, i have just updated my previous post with all info. and am creating new post. hope this is right.
I am new to this group and would love some of your wonderful help.
Background
Saw a private endocrinologist because I was feeling cold etc. back in 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 (9.0 - 22.0)
T3 3.03 (2.63 - 5.70)
TSH 1.61 (0.35 - 4.94)
Anti-thyroglobulin abs. 14 (0 - 40)
Anti- thyroperoxidase abs. 10 (0 - 35)
Iron 12.5 (8.0 25.0)
Total iron binding capacity 63 (45 70)
Saturation 20 (20 - 50)
VIT B12 PROFILE
Vit B12 715 (187 - 883)
Folic acid 15.4 (2.3 - 17.6)
Red cell folic acid 586 (180 - 750)
After all these blood tests he started me on 50ug Levothyroxine daily
Aug 2016
On 50ug results
T4 12.4 (9 - 22)
T3 4.2 (2.6 - 5.7)
TSH 0.96 (0.35 - 4.94)
Iron 11.7 (8.0 - 25.0)
T.I.B.C 54.4 (45 - 70)
Saturation 22 (20 50)
So he increased to 75ug daily
Nov 2016
On 75ug daily
T4 13.4 (9.0 22.0)
T3 4.28 (2.63 - 5.70)
TSH 0.73 (0.35 - 4.94)
Iron 15.9 (8.0 - 25.0)
T.I.B.C 62.3 (45 -70)
Transferrin Saturation 26 (20 - 50)
So he increased to 100ug daily
Feb 2017
On 100ug daily
T4 16 (12.0 - 22.0)
T3 3.8 (3.1 - 6.8)
TSH 0.2 ( 0.27 - 4.2)
Iron *4.5 (6.6 - 26.0)
T.I.B.C 54 (41 -77)
Transferrin Saturation *8 (20 - 55)
Happy so he left dose unchanged. He added daily 200mg Ferrous Sulphate.
July 2017
Continuing on 100ug daily
T4 16.2 (12.0 - 22.0)
T3 3.5 (3.1 - 6.8)
TSH 0.33 (0.27 - 4.2)
Iron 17 (6.6 - 26.0)
T.I.B.C 55 (41 - 77)
Transferrin Saturation 31 (20 - 55)
Ferritin 46 (13 - 150)
Vit D 85 (50 - 200)
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.
Aug 2021
having started reducing dose
TSH 0.71 (0.27 - 4.20)
June 2022
TSH 0.99 (0.27 - 4.20)
Serum ferritin 78 (13.00 - 150.00)
July 2022
Serum folate 14.2 (>3 ug/L)
Serum B12 477 (180.00 - 999.00)
Sept 2022
TSH 0.47 (0.27 - 4.20)
Dec 2022
TSH 0.63 (0.27 - 4.20)
Serum folate 10.5 (>3 ug/L)
Serum B12 494 (180 - 999)
Serum ferritin 85 (13.00 - 150.00)
I stupidly gradually reduced my dose thinking I could wean myself of levothyroxine not understanding that you need to take it for life. I have osteoporosis and read something bad about levothyroxine and bones which I now know is mistaken. Beginning of 2020 I got breast cancer and have been distracted 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 and brain fog my breast oncologist did lots of blood tests including thyroid.
T4 11.9 (10.0 - 28.2)
T3 4.9 (4.3 - 8.1)
TSH 1.42 (0.465 - 4.68)
(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 (0.27 - 4.20)
(I took levothyroxine on morning of test as I didnt know it affected results. In future I will leave 24 hours).
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 on empty stomach with water
April 2023
Cortisol 700 (range 170 - 490)
May 2023
Cortisol 801 (range 170 - 490)
July 2023
Cortisol 729 (range 133 - 537)
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 only currently take:
75mg Levothyroxine (in morning with water empty stomach wait 2 hours before food).
Vit D 2000iu daily
ferrous sulphate 200mg daily
Famotidine 20mg daily for my acid reflux
I am very tired, lethargic, brain fog, gaining weight and am also having day sweats. I also have high cholesterol. I eat a very healthy diet and have always taken a lot of exercise.
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
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