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TSH high, when does thyroxine start to make you feel better?

10 replies

ThePumpking · 12/12/2022 20:29

I recently had some bloodwork done and TSH came back at 37 so was put on 25mcg thyroxine instantly. I understand that they recheck every 6 weeks and up the dose if needed after that but when can I expect the levels to start dropping? After my 1st baby my tsh went to 10 but then dropped to borderline high without medication and I felt a bit more energised but this time its obviously much higher and I'm just bone crushingly tired all the time. With 2 small people to run after I just want to have an idea (some hope!) of when I can start feeling more normal again. I know its very much dependant on the person but I'm hoping someone might have had similar levels and will be able to tell me.

OP posts:
Freetodowhatiwant · 12/12/2022 20:54

It will take a few weeks but you should hopefully feel better incrementally. That said 25mcg is a very low dose. Most people find that they function best when their TSH is around 1-2. For me I start to feel pretty ropey if mine gets closer to 3. But they are hopefully starting you off low and increasing it. Don’t let them tell you your thyroid is ‘normal’ without finding out the ranges. Like I said most people find they feel best with a tsh of around 1.

ThePumpking · 12/12/2022 21:24

Thank you for replying. My gp is very good and will happily give the actual results rather than just "in range" thankfully! I know when I went from 10 to 4.something I still felt absolutely exhausted but I assumed that was because I was looking after a baby. To be honest I've been so shattered for so long I thought I felt normal. It's good to know what ideal I'm looking for, hopefully they'll up the medication quickly if it's a low dose currently. I think I was so excited at this potentially being the magic cure that I got disheartened at feeling no different!

OP posts:
Anyfeckinusername · 12/12/2022 21:40

25mg? NHS doctor? Sorry to be alarming but you need a new doctor asap. You should be on anywhere between 50 and 100 and then some dose tweaking / blood tests to figure it out.

If you start on 25 for 8 weeks, limp along,do a blood test, await results, then wait for a review appt, then try 50 for a few months, limp along on rinse and repeat... before you know it 10-12 months will go and you'll only be starting to feel the benefits of creeping up slowly to the right dose (which is probably 100!)

Myself and two children all have thyroid replacement requirements for different reasons.

Your tsh needs to get as close to 1 as possible.

Pelo22 · 12/12/2022 22:00

Anyfeckinusername · 12/12/2022 21:40

25mg? NHS doctor? Sorry to be alarming but you need a new doctor asap. You should be on anywhere between 50 and 100 and then some dose tweaking / blood tests to figure it out.

If you start on 25 for 8 weeks, limp along,do a blood test, await results, then wait for a review appt, then try 50 for a few months, limp along on rinse and repeat... before you know it 10-12 months will go and you'll only be starting to feel the benefits of creeping up slowly to the right dose (which is probably 100!)

Myself and two children all have thyroid replacement requirements for different reasons.

Your tsh needs to get as close to 1 as possible.

That's basically what happened with me
Given 25, did nothing. Went to 50, TSH was 4 and they said "that'll do" Confused
I asked "well would it do any harm for my TSH to be lower?"
They said no but 50 was the right dose

Thankfully I'm under haematology who is very pushy/bolshy/straight talking efficient who rang my GP and asked if they were trying to treat my hashimotos via homeopathy or using actual medication as I'm 5ft 10 and needed more than a homeopathic dose BlushBlushBlush

I got put onto 75 the same day Grin

Honestly I adore him, nearly choked laughing listening to that conversation

Anyfeckinusername · 12/12/2022 22:37

@Pelo22 😂😂😂 love it!

Aria999 · 12/12/2022 22:44

When I started taking it (also 25mg to begin with) it took about 20 minutes for me to start feeling a difference.

I'm now on 112mg and have been for years.

Some people do take a while to find the right level, good luck.

ThePumpking · 13/12/2022 06:41

Anyfeckinusername · 12/12/2022 21:40

25mg? NHS doctor? Sorry to be alarming but you need a new doctor asap. You should be on anywhere between 50 and 100 and then some dose tweaking / blood tests to figure it out.

If you start on 25 for 8 weeks, limp along,do a blood test, await results, then wait for a review appt, then try 50 for a few months, limp along on rinse and repeat... before you know it 10-12 months will go and you'll only be starting to feel the benefits of creeping up slowly to the right dose (which is probably 100!)

Myself and two children all have thyroid replacement requirements for different reasons.

Your tsh needs to get as close to 1 as possible.

She was the first one to actually offer me medication! The other one wanted to wait and check again in a few weeks so I'm grateful for any dose haha. I'm awaiting the antibody test results so may ask if I can up the dose already when they call with those results then. Thank you for the advice!

OP posts:
Anyfeckinusername · 13/12/2022 19:51

@ThePumpking it's just a really low dose for quite a high TSH. For context, my eight year old daughter had a TSH of 11 and was put on 37.5 daily. It wasn't quite enough and is now upped to 50 daily. Granted it's more "serious" in children as it's affecting their physical growth so there is more urgency in getting it right.

I know we are all different but honestly it is a very low starting point. I was about, I can hardly remember - in the teens somewhere and I am on 100. A TSH of 37 isn't in any way borderline. You must be feeling really really exhausted. I was amazed when I got on a half decent dose I felt "myself" again within days and weeks, it just kept improving.

I had to give up on my nhs doc for my thyroid and I went private. That's when I was bumped from 25 to 100, and blood tested four weeks later.

Best of luck. You'll get there soon!

Pelo22 · 13/12/2022 20:00

@Anyfeckinusername that's really interesting - I'm on 75 and TSH hovers around 1
Feel absolutely no different from when my TSH was 7.5 Confused

Had been saying for years my thyroid was an issue (all females in the family have deranged thyroids, mum had part removed I think) and they kept saying it was fine

TheOtherHotstepper · 14/12/2022 13:30

I started on 75 mcg and felt better from the very first dose. Now on 125.

The problem is that thyroxine doesn't support your own thyroid function, it actually knocks it out.

Here are the current recommendations for dosing:

cks.nice.org.uk/topics/hypothyroidism/prescribing-information/levothyroxine/

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