Decreasing TSH & feel worse lower TSH becomes!!! - Thyroid UK

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Decreasing TSH & feel worse lower TSH becomes!!!

thyroidfairy profile image
17 Replies

Within the last six weeks TSH was 180 then TSH 100 now 77 (on 225mcg daily) feel sicker lower TSH becomes..any idea why and has anyone been in same situation.

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thyroidfairy
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17 Replies
greygoose profile image
greygoose

Your TSH doesn't make you feel anything, whether it's high or low. It's the low T3 that causes symptoms. And, just because your TSH is coming down, does not automatically mean that your FT3 is going up. You really need to get that tested.

thyroidfairy profile image
thyroidfairy in reply to greygoose

greygoose I honestly had no idea TSH regardless of the numbers was not the cause, I have been referring to it since I found out it was high & totally blaming my symptoms so thank you as hugely appreciated I have thyroid bloods on Fri so now I know I will be insisting T3 gets checked as well

greygoose profile image
greygoose in reply to thyroidfairy

Well, that's not surprising, given the way doctors are so obsessed with the TSH. Anyone would think it was the villain!

shaws profile image
shawsAdministrator in reply to thyroidfairy

Its a Free T3 which is the best for info and also Free T4 if they'll do it. Usually if GP requests the labs don't do them as they've been told if TSH is in range just do T4.

radd profile image
radd

thyroidfairy,

If you have had T4 & T3 tested, post these results complete with ranges (numbers in brackets) for members to comment.

Did you ask for further investigations into a possible pituitary dysfunction after your fall and seizure ? .

thyroidfairy profile image
thyroidfairy in reply to radd

radd I will ask if T3 been checked recently when getting repeat thyroid blood check on fri, I want to say T4 was 12 but not 100% so get that result & tested as well then I can post these results

My gp saw me later in week after my fall & thought may be tumour in pituitary, he didn't have my hosp results so I informed him had a CT 5 days ago & it was clear. Are there other pituitary dysfunction investigations or does clear CT mean pituitary is not to blame?

radd profile image
radd in reply to thyroidfairy

TF,

An MRI is more detailed than a CT scan but very small pituitary tutors or those in early stages of growth can still be missed.

The pituitary gland also recreates other hormones such as ACTH, LH, FSH, prolactin and growth hormone. If a pituitary tumour is suspected, these levels can be measured by blood test.

thyroidfairy profile image
thyroidfairy

really

thyroidfairy profile image
thyroidfairy in reply to thyroidfairy

Hidden I have a vitb12 injection every 3 months & was told recently ferritin / folate were within the normal range but I didn't ask for the numbers..I have repeat thyroid bloods due on Fri so will get the numbers then, hadn't heard of vitd3 & will be getting result & tested then also

I am off work but been a bit of a struggle as gp is issuing a weekly sick line& definitely had the impression I should be back at work..when TSH 180 I was working full time did feel a bit tired & concentration not so good. Now TSH 77 if anything I feel worse which makes no sense as TSH although fairly high still at 77 is big improvement from 180

I didn't realise it's T3 the important one which dictates how you feel so I'll make sure this is checked on fri

Bodil333 profile image
Bodil333 in reply to thyroidfairy

B12 injections every 3 months is not good enough. Ig you were able to get injections, it means your B12 was on the floor. You need to take it every day, or have injections every 5 - 7 days. There are B12-pills with intrinsic factor, which is the one fr you. Please be aware that with all test, you need to look at an optimal range, not NHS. If you Ferritin for example is within - but at the lower end, it means it is functionally low - it can well affect your health. The same goes for other nutrients. They are based on an average of the population, not on what the body needs. So - if more people become vegans/vegetarians, B12 in the population goes down and reference range is lowered.

Heloise profile image
Heloise in reply to thyroidfairy

Here is a short version which may help you understand how thyroid metabolism works.

health.howstuffworks.com/hu...

thyroidfairy profile image
thyroidfairy in reply to Heloise

Thanks for where to find thyroid metabolism info I will check it out

Kel8 profile image
Kel8

I was still functioning with a TSH of 136. After being diagnosed and starting Levo I felt worse. As greygoose has said, it was because my T3 was so low and didn't rise to a reasonable level for a long time (with addition of T3). I was also vit D, B12, ferritin and folate deficient. It's too early for you to know yet but it also turned out Levo wasn't for me. Felt awful on it so now take T3 only.

Glynisrose profile image
Glynisrose

TSH becomes irrelevent when you are taking any form of thyroxine.

OldHippie profile image
OldHippie

Worse being lethargic , low energy? I have seen this when the tsh was held below normal for over a year, with t3 t4 in range. That is sub clinical hyperthyroidism, and can cause heart failure. But if your tsh was always high, that's not the case. In the case I know of the tsh went to 140 for a short time as Dr's tried to correct the low tsh problem by withholding too much thyroid med. Then the patient later developed heart failure due to the prior long period (4 years) of being with a tsh too low.

whispers60 profile image
whispers60 in reply to OldHippie

Is that actually true about keeping tsh low? It's not something I have come across

greygoose profile image
greygoose in reply to whispers60

No, it's not.

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