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Serum TSH levels

12 replies

Grapejam · 08/05/2025 10:25

Hi there
In late 2024 i had bloods taken after a pre op assessment. My TSH was 20.4 and i was put on levothyroxine 25mg and advised repeat bloods in 8 weeks. Had bloods taken early feb 2025 and TSH was now showing as 32.8 so medication upped to 100mg and again bloods to be repeated. I had bloods taken end of april and results are showing 21.4 and GP has advised upping the medication by 25mg. Does this sound right?? I thought after 5 months of taking the medication that it wouldnt still be higher than when i wasnt on any medication... anyone experienced similar ?? Thanks

OP posts:
Flowerfairy13 · 08/05/2025 12:19

Hey, I would ask for a full set of thyroid bloods, including TSH, T3 and T4 so you can see where they are at. It may take more time for your TSH to come down, but more importantly you need to know if your t3 and t4 are in range. It's quite complicated and there is a alot to learn about thyroid issues. Don't expect your GP to know or tell you anything. Do some reading of your own. Health Unlocked Thyroid board can be helpful

Grapejam · 08/05/2025 13:01

Flowerfairy13 · 08/05/2025 12:19

Hey, I would ask for a full set of thyroid bloods, including TSH, T3 and T4 so you can see where they are at. It may take more time for your TSH to come down, but more importantly you need to know if your t3 and t4 are in range. It's quite complicated and there is a alot to learn about thyroid issues. Don't expect your GP to know or tell you anything. Do some reading of your own. Health Unlocked Thyroid board can be helpful

Hi thanks for replying my t4 level in dec 2024 was 9.5 but since then they have only done tests it would appear on the TSH levels. Yes i am beginning to realise that GPs are on a different planet. I thought as my TSH was so high they would be monitoring closely but appears not i will try and do more research myself!

OP posts:
Flowerfairy13 · 08/05/2025 13:07

TSH is a strange thing really. How high ones is, doesn't really reflect the severity of symptoms or the disease. If your GP not willing to run a full panel I would get a finger prick at home test done (medichecks or similar). Do you know if the cause is auto immune? Have they ever tested your anti bodies?

Grapejam · 08/05/2025 13:31

Have no idea to be honest. I havent been to GP in years. It was only due to a pre op assessment that stated extremely high blood pressure that then meant i had to go to GP to get it under control before op. So bloods undercovered type 2 diabetes and under active thryoid so i was put on tablets for all 3 . The blood pressure seemed to get under control but im just being advised take tablets for this and that and then have repeat bloods and just given more tablets. No communication with GP etc just texts asvising outcome
I might have to look at the at home tests

OP posts:
Flowerfairy13 · 08/05/2025 15:17

So high blood pressure very commonly linked to hypothyroidism. Once thyroid levels under control, blood pressure may come down of own accord. If your taking statins beware they interact with Levothyroxene and should be taken apart from each other.
Yes GPs just don't spend the time to explain it all, just leave you to get on with it. It's frustrating.

Grapejam · 08/05/2025 15:36

Yes taking statins for high cholesterol aswell. From somone who never went to the GP or took tablets i feel like im never away from the nurses and always pill popping. It is very frustrating ive never been told high blood pressure can be linked to it either so thankyou for educating me. When it was first mentioned and i was told i needed the tablets i stupidly assumed that it would bring the results down but when it went even higher and then still higher than the initial result i thought to myself that cant be right. Im guessing after the next bloods are done in june i will need a higher dosage again but i need to start revising up on it all myself
Thanks again

OP posts:
Firefly1987 · 09/05/2025 04:50

Not an expert as I was only recently diagnosed but I was put on 50mcg with a TSH level around 11, and I specifically asked if it was quite a low dose (because I was anxious about taking any meds) and doctor said yes so I think perhaps the 25mcg just wasn't enough to do much and is not the usual starting dose, especially with a TSH as high as yours. Perhaps they put you on that due to your other issues? I think now you're on the right sort of dose it's coming down albeit slowly. But don't take any of this as gospel or anything just going by my own experience! May I ask what sort of symptoms you were getting and if they've improved any?

Grapejam · 09/05/2025 08:32

Hi again
With symptons ... im a woman of a certain age over 50 and put alot of my issues ie alwayssss tired hair loss very dry skin anxiety very irregular cycle as being menopausal but i have no idea how long my TSH levels have been off. Unfortunately i dont feel the slightest bit diff since being on tabs since dec.
I did read as ive been looking into it alot since yesterday that having radiotherapy in your head/neck area can also cause issues with TSH but that was 20 years ago and ive never had bloods done since until dec 2024 so maybe its been off for years !

OP posts:
Firefly1987 · 10/05/2025 00:08

@Grapejam Sorry you've not had any improvement in your symptoms yet. My symptoms are not too bad atm I have dry skin, hair loss (not so you'd notice yet but when I brush and wash my hair I feel like there's loads coming out), always cold and developed Raynauds a few years ago which could be connected. Lack of energy, depression etc. but then I've felt like that for ages too. I actually went docs with aches and pains but that turned out to be something else (vitamin deficiency) but I did suspect I was hypothyroid for a while too.

It's crazy to think maybe you've had it that long and you weren't tested all this time given what you've found out. If you go on some thyroid forums maybe there would be others who had the same treatment and then developed thyroid issues? Hope you are able to find some answers and your symptoms improve.

Grapejam · 10/05/2025 16:51

Im glad you are not having too many issues at present. I am same regarding hair loss i still have plenty but when i wash my hair sooo much comes out it clogs the sink and the water wont go away ! Strangely its only on one side thou... if i look in the mirror i can see my hair on one side it still quite bulky but on the other side thats a diff story🤔
What a life huh if only we could wake up one day and have no issues no aches etc. Im only early 50s i dread what it will be like waking up in my 70s (and yes i know i shouldnt say that as there are far more worse things people suffer with)

OP posts:
ThisOpenMauveLurker · 10/05/2025 17:04
  • The NICE clinical guideline recommends:
  • Consider starting LT4 at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 years of age with primary hypothyroidism and no history of cardiovascular disease.
  • Consider starting LT4 at a dosage of 25–50 micrograms per day with titration for adults aged 65 years and over and adults with a history of cardiovascular disease.

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

The maintenance dose you’ll reach is usually weight-dependent, so if you have a recent weight to hand you are likely to end up on approximately 1.6mcg/kg

Its normal when you first start to titrate up according to response

I had a lot of hair loss when I was first diagnosed but they found my ferritin level was low as well, would be worth seeing if they checked this and requesting if not

Winterymix · 10/05/2025 17:05

I was diagnosed hypothyroid late last year - I've had very little info from the doctor and have really had to self educate. The Health Unlocked forum mentioned above is useful. My understanding is the synthetic hormone replaces rather than tops up what you make so it's possible to get worse before better, and also that it has quite a narrow therapeutic range meaning it might not make much of a difference until you're at least close to your ideal dosage levels. I've been increased from 50 to 100 since diagnosis and TBH still waiting to feel much better. Also worth checking your vitamin levels (B12, D, iron and magnesium in particular) as deficiencies in those seem quite commonly linked to thyroid issues. There's also, unhelpfully, huge overlap in hypothyroid/menopause symptoms so it might be a bit of trial and error but I hope you feelbl better soon.

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