Updated! Help please with blood results -hypothyroid and cortisol

[1965Katy]

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

[SlowDragon Administrator]

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).

So you need 25mcg dose increase in levothyroxine up to 100mcg

Retest again in another 6-8 weeks

Likely to need further increase in levothyroxine after this

High cortisol will reduce as you increase dose levothyroxine

adrenals try to compensate for lack of thyroid hormone by increasing cortisol

It will take several weeks for cortisol levels to drop

Likely to now have low vitamin B12 and folate levels too unless supplementing daily

Suggest you start taking daily vitamin B12 and after a week add daily vitamin B complex

which brand of levothyroxine are you currently taking

Do you always get same brand

Approx how much do you weigh in kilo

Guidelines on eventual dose is Approx 1.6mcg per kilo per day