T3 woes: I am having problems with my T3. I have... - Thyroid UK

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T3 woes

magsyh profile image
17 Replies

I am having problems with my T3. I have been on 2.5mcg twice a day for 10 weeks now as any time I try to raise it I have problems. Latest blood test showed TSH still 1.76 (0.35-4.5) T4 14 (12-22) T3 4.4(3.1-6.8)

I'm obviously still under medicated so last week I decided I had to try again so I upped morning dose to 5mcg and left afternoon at 2.5mcg. this is day 4 and I feel terrible, pounding headache and I feel like I really want to throw up. Pulse is ok sitting 80- 90. Gets worse late evening. To be honest id rather go without it but when I tried to reduce it I had headache, felt awful but past 2 days with slightly higher dose feels worse. I regret starting it at all and if I had a choice would never take it again! If I reduce my thyroid medication I pile on weight. Past 2 years has been almost 2 stone! I really feel I've had enough of T3 so how do I get off it when my body seems to want it. I couldn't raise my T4 either that's why doc said try T3 but I'm terrified now that I'm on something I can't get off. I'm also on hydrocortisone for low cortisol but that only seems to work with very low dose T3. Should I go back to original dose tomorrow? I can't stand the feeling sick and headache.

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magsyh
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17 Replies
SlowDragon profile image
SlowDragonAdministrator

There’s nothing on your profile

Do you have Hashimoto’s?

If yes......Are you on strictly gluten free diet?

What vitamin supplements are you currently taking

When were vitamin D, folate, B12 and ferritin last tested?

How much levothyroxine are you currently taking?

Do you always get same brand

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test and last 2.5mcg T3 8-12 hours before test?

Ft4 is rather low

When did you last do cortisol and DHEA test

magsyh profile image
magsyh in reply toSlowDragon

No I don't have hashimotos. My cortisol was last tested in July. Was low most of the day and normal night. I have been gluten free 4 years. Ferritin high but b12 and folate optimal and vit d 76. I'm only on 50mcg levo. Test was done morning before food or medication but T3 would have been 16 hours as I couldn't tolerate T3 after late afternoon. I have stopped taking b complex as I discovered it was causing my palpitations. Still taking d and K2, folate and b12 occasionally. I am just fed up of it all, the past 2 years been a nightmare of ups and downs

SlowDragon profile image
SlowDragonAdministrator in reply tomagsyh

Which brand of levothyroxine are you currently taking

Which brand of levothyroxine have you tried

Has endocrinologist tried you on liquid levothyroxine?

Palpitations are frequently due to being under medicated.

magsyh profile image
magsyh in reply toSlowDragon

I'm taking euthyrox I haven't tried any others as I get T4 and T3 on private prescription. I had to go private as I was really ill with a T3 of 3 and NHS wouldn't help me. I think I have an iodine deficiency to be honest and my thyroid is working fine that is why I'm having so much problems on thyroid medication.

SlowDragon profile image
SlowDragonAdministrator in reply tomagsyh

Are you vegetarian or vegan?

Your endocrinologist could prescribe liquid levothyroxine as trial. But it’s expensive

magsyh profile image
magsyh in reply toSlowDragon

No I eat a healthy varied diet but somedays I'm very hungry and others I have no appetite. When I have headache and nausea I'm just not hungry

SlowDragon profile image
SlowDragonAdministrator in reply tomagsyh

Levothyroxine contains all the iodine you need

Chicken26 profile image
Chicken26 in reply toSlowDragon

try finding an all natural endo...i take np thyroid and no problems..i take it sublingually to bypass stomach...synthetic drugs are bad....palpitations occur when ur going hyper so try to keep tsh around 1 or little under....i went hyper and had to stop my meds for a bit as palpitations were scary....

helvella profile image
helvellaAdministrator in reply toChicken26

I don't think there is an "all natural endo" in the UK - unless you know otherwise?

(Doctor names not to be published on the forum, please.)

SlowDragon profile image
SlowDragonAdministrator

Hidden may pop along re hydrocortisone

What dose are you taking?

magsyh profile image
magsyh in reply toSlowDragon

I'm taking 5mg four times a day

in reply tomagsyh

What was your cortisol level when it was first tested? Did you Endo prescribe your Hydrocortisone? It;s unusual to take the same amount at all 4 doses as it's suggested that the first dose in the morning is the highest & then smaller dose to try & mimic the body's normal cycle.

magsyh profile image
magsyh in reply to

No he refused as he said it wasn't his area of expertise! So I bought my own. My morning cortisol was 12 (6-30) I have split it into smaller doses as don't want to mess up my ACTH. I thought it a bit off when he expected me to try T3 without it as T4 really drained my cortisol as last year morning cortisol was 17. I tried ACE but it did nothing for me.

in reply tomagsyh

I'm assuming you re not in the UK as those numbers are different to the reference range we use here. Taking 20mgs of Hydrocortisone is a therapeutic replacement dose for people with adrenal insufficiency, you seriously risk your adrenal glands stopping working altogether. That dose, even though you are taking it in smaller doses will cause the HPA axis not to work properly which will stop your pituitary making ACTH. This then becomes a life threatening condition where you will die if you stop taking the HC. I wouldn't wish this on anyone, mine is due to removal of a pituitary tumour so I don't produce ACTH, now my adrenal glands have atrophied so I need HC to live, I have to carry an emergency injection kit all the time.

magsyh profile image
magsyh in reply to

No I'm in UK. Test results were saliva. I had a serum cortisol test 4 weeks ago which was 430 at 10am with no HC since the night before.

in reply tomagsyh

That's a good normal result, which would suggest that the weight gain you have experienced is due to the Hydrocortisone as weight gain is typical of high levels of cortisol. A result of 430nmol/Ls is well within the normal range & suggests that you don't need to take HC, as well risking stopping your adrenal glands working because they will get lazy & stop producing cortisol, you run the risk of having symptoms of Cushing's syndrome too.

magsyh profile image
magsyh in reply to

I've only been on HC 12 weeks and haven't put on any weight since. If I can get off the T3 I will get myself off HC too. I am going to give iodine and selenium a go as 5 years ago after a CT scan with iodine contrast I went hyper, then my thyroid worked great for about a year and then crashed. NHS are just not interested and my private doc charges me an arm and leg. He put me on all the thyroid meds but none of it has done any good. My cortisol was fine until I started levo and it just kept getting worse.

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