Struggling with Underactive Thyroid

[May10]

I am new to this site although I have been a member of the PMR one since 2016.

I have been on Levethyroxine for many years. Really I have never felt well. I have been on Prednisolone for PMR since 2016. Luckily I have been able to come off the steroids recently, but still feel rubbish. My doze of Thyroxine has been upped and downed over the years but I cannot say that anyone has managed to get it right|

I asked to see an endochronologist at Christmas as I wanted to find out if my Adrenal glands were likely to work again,after coming off Pred, thinking that could be the reason for my exhaustion. i had a private phone consultation with this man and he said my Adrenals seemed ok but put my Thyroxine up to 125 Monday to Friday and 100 Saturday and Sunday. Since then with blood tests my GP says I am being over treated. I think she is right.....I am exhausted, breathless, shaky inside....not visible, brain fog, feeling sick, constipated but feel I could have runny stools. My hands are numb and tingly.

i am not sure what I am asking but feel that I got a lot from being a member of the PMR community, so am hopeful I will get the same here.

[Lalatoot]

Welcome May. To help we need to see any blood results and the ranges for the results.

It is important to know what your thyroid blood levels are and what your vitamin levels are.

There are lots of folks on here with many different experiences so I am sure you will find help.

[May10 in reply to Lalatoot]

Hi, thanks for replying. The only results I can find are Jan 22 TSH 0.24 T4 23.

June 22 TSH 0.3 and September 22 TSH 0.12 (0.27 - 4.2)

[May10 in reply to Lalatoot]

Hi thanks for replying. The only results I can find are Jan 21

[May10 in reply to Lalatoot]

Sorry I gave some figures but they have disappeared. Here we go again. Jan 22 TSH 2.1

and T4 23. June 2022 TSH 0.3 . September 2022 TSH 0.12 (0.27 -4.2)

[SlowDragon Administrator]

welcome to the forum

Do you always get same brand levothyroxine at each prescription

ALWAYS test thyroid levels early morning, ideally around 9am and last dose levothyroxine 24 hours before test

For levothyroxine to work well it’s important to have OPTIMAL vitamin levels

Are you currently taking any vitamin supplements

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Ask GP to test vitamins

Do you have autoimmune thyroid disease?

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[May10 in reply to SlowDragon]

Wow, thank you this is a lot to take in. I will study it carefully.

I already get Vit B12 injections every 3 months.

I paid to have a phone call with an endo at Chritmas. he never gave me the results just told me to increase my med to 125mcg Mon to Friday and 100 Sat and Sun. With having PMR I have been on VitD3 with Calcium. Also because of osteoporosis I take K2 and Magnessium.

In July after a blood test I got a phone call from GP saying I was being over medicated and to reduce to 100 every day. I did this and had another blood test at the beginning of this week.

I got a text message saying again I was over medicated and to reduce to 100||| i have sent a note explaining my symptoms and the fact that I have been at 100 since July. I await a reply.

I have not taken any for the last 2 nights but feel I better take something tonight.....but how much?

[Buddy195 Administrator]

Welcome to the forum!

As Lalatoot and SlowDragon have outlined, I would definitely recommend you ask for FT3 and FT4 levels testing in addition to TSH, to get a better picture of your thyroid health. Testing key vitamins is also very important.

I need to both increase & decrease thyroid medication super slowly, as otherwise I get palpitations, fast heart rate, anxiety attacks etc. I’ve found a pill cutter really handy and only adjust doses by 12.5mcg Levothyroxine, alternate days at first.