TSH 23.99 from 3.99 in 12 days after changing from NDT to T4 only medication

[McPammy]

Hi

On 24 Jan 19 I had my bloods done while taking NDT. I’d been on NDT for about 6 months.

My results were:-

T4 8.8 (7.86-14.41)

T3 5.6 ( 3.7-6.0)

TSH 3.99 (0.35-5.50)

Cortisol 112 (155-607) 2pm

I was very unwell the day of the above test. I could hardly walk with weakness.

My Endocrinologist suggested I stop taking NDT he said it was not physiological and could cause long term damage. Not sure what damage. He suggested liquid thyroxine instead.

I started liquid thyroxine and have now been on it for 12 days. At first I felt absolutely fantastic. At last I thought I can now get my life back. I was free of weakness and very heavy legs. After 5 days had past I got pain in my lower back quite bad. Then I got very weak indeed. I had double vision and my face half numb. I could hardly walk. It was very frightening. Then I bounced back again. Then the same thing happened a few days running. Today was the worst day ever. I had already a blood form off my GP to go to my local hospital for thyroid and cortisol monitoring. I literally fell into the blood clinic. My legs would not carry me I was so weak. They got my s wheelchair and I was taken to A&E.

When my bloods came back today this was the results.

T4 8.8 (7.86-14.41)

T3 4.30 (3.7-6.0)

TSH 23.95 (0.35-5.50) !!!

Cortisol 277 at 10am

I have been taking the Levo liquid as directed. Half in the morning then half in the afternoon. This is the same as I took NDT half am and half pm.

I just don’t understand what is happening to me. The A&E Dr today was bewildered. Does anyone have any idea what maybe going on here.

I will be contacting my GP and Endocrinologist but just thought you lovely people may be able to throw some light on this.

I have taken my medication everyday.

Thank you for any help.

Pam

[Redditch]

Pam you poor poppet.

Right T4 and T3 stayed about the same but TSH went through the roof

Sounds like it's NOT your thyroid.

Your endo needs to test your pituitary and hypothalamus. Something OTHER is happening

It means your thyroid symptoms are caused by something else further up the chain. Or, the TSH test was out... Get it retested and see your endo.

With your T3 and T4 holding up, there would be no need for your TSH to be so high.... Other factors could be thyroid storm ?

Test again, and if it is still like that get endo to check the rest of the system.

Good luck

[McPammy in reply to Redditch]

Thank you! I felt terrible but stabilised again later on. Took my medication about an hour ago and feel ok so far. I’m seeing a new Endocrinologist this Friday. It’s been and still is a nightmare to live through.

Thanks again. Hope you are ok.

Pam x