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Original poster

If you have an underactive thyroid...

29 replies

PartnersInCrime · 17/08/2023 20:43

And are treated by the NHS, what is your TSH and do you feel adequately medicated?
Just trying to summon up the energy to try and deal with a service that just don't seem to care 😭

OP posts:
GoldenKiwi · 17/08/2023 20:49

Hi, my TSH was 0.46 on my last blood test and I am on 100mcg of levothyroxine.

I feel okay but still have waves of tiredness and my hair is still falling out quite a lot.

Wenfy · 17/08/2023 20:51

TSH was 7. My antibodies were 300. It wasn’t the tsh that prompted treatment (it was just in range) but the antibodies. You need to get a full thyroid panel - many gps don’t test antibodies until you force them to

Wittyapple · 17/08/2023 21:00

I have under active thyroid / hashimotos and 100 mcg - the gp doesn’t follow up with anything unless I push them. It’s always worth asking for a full vitamin / panel as sometimes I’ve had b12/ iron / iodine low.

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Wittyapple · 17/08/2023 21:01

Tsh 4.8 “normal range” but we all know “normal” doesn’t mean optimal

smokingcarriageonly · 17/08/2023 21:31

Yes I'm happy now - on levo and liothyroninine - but it took a while to work it out and I'm always worried the GP will decide to stop prescribing T3.

Have you had a look at the Thyroid UK forum?

smokingcarriageonly · 17/08/2023 21:32

TSH usually under 1 for me. TSH shouldn't be as high as 4 or 5 on levo.

Bonfire23 · 17/08/2023 21:34

2.5 and no, I changed doctors as it was the last straw and they said 2.5 was "perfect"

My new GP talked about the importance of T3, medicating on symptoms and then increased my levo to 100mcg. He's also asked me to go for a huge amount of bloods including having my T3 tested which has never been done as he wants a baseline of all my results
Astounded I was!

Mummumgem · 17/08/2023 21:43

My doctor told me my thyroid isn’t underactive it’s not active 😳🥴, I’m on 225 mcg of levothyroxine, as well as water retention, heart medication and pain killers! Not giving up yet though 😁

webuiltthiscityonrockandwheat · 17/08/2023 22:56

I actually have no idea what my TSH is but I feel looked after. I initially started on 75mg levothyroxine then up to 100mg and now 125mg. Still very tired but I also have low vitamin D so could be that

Needmoresunshine · 17/08/2023 22:59

Felt absolute shite even though tsh was "normal". Eventually t3 was done and was low. Now on liothyronine, which has been a game changer, although as a pp says I live in fear that the gp will stop prescribing it.

TheNestedIf · 18/08/2023 00:24

When I was initially ill, before medication, my TSH was 2.35 (normal), and my T4 was 10.6 (low). I felt appalling and spent every spare hour asleep.

Now I'm on 100mcg of levothyroxine daily. My last tests back in October showed TSH at 0.12 (low), and T4 at 12.4 (normal). I feel much, much better.

They did test me for antibodies in my second batch of tests, but all was fine, so they've never done it again.

Nat6999 · 18/08/2023 02:17

My TSH is 1.0, I'm on 100mg of thyroxine, before I started taking it my TSH was11.5.

Original poster
PartnersInCrime · 18/08/2023 06:15

Thank you all for replying. I have multiple deficiencies which I'm working on. Had private blood tests to have a look at my progress on those but TSH included showed 3.5 which I feel is higher than it should be while medicated...but feel my GP service couldn't care less. Free T3 was measured at 4.

OP posts:
AlmostTotallyFake · 18/08/2023 06:16

No idea what my levels are/were (the handy brain fog that comes with under active thyroid means I struggle to retain info!) but depending on your GP prepare for a fight.
I was brushed off for years and years. As I got worse rather than better in their care they finally conceded defeat and referred me to a consultant that specialises in this kind of thing. He has been amazing but it was a long road getting to him.
Good* *luck.

SeaToSki · 18/08/2023 06:22

Sounds like your dose should be significantly increased.

Also, it is very helpful to take a selenium supplement if you are taking thyroxine, it helps the liver convert it to the active form.

Original poster
PartnersInCrime · 19/08/2023 21:42

Thanks all Flowers

OP posts:
WhateverMate · 19/08/2023 21:45

I was diagnosed 18 months ago and it's weird but I've never thought to ask what the numbers are?

I have blood test every 3 months and the GP tells me if I need to increase the Levothyroxine or not.

I haven't needed an increase for about 6 or 7 months though.

smokingcarriageonly · 21/08/2023 14:22

OP have you spoken to them about getting your TSH closer to 1?

On the face of it my GP dgaf either but I went in with a printout from a professional body (details lost in the mists of time but it was available via TUK) saying that some people's symptoms only resolve on a dose that maintains a TSH close to 1. He said oh yeah, that's true, do you want to try a higher dose?

Or ask to be referred to an endocrinologist, but get a TUK recommendation first.

WoahLivingOnABear · 21/08/2023 14:30

Pre treatment my tsh was 19.2 yet it still took more than a year to start levo! Been on levo about 5 years.

On 125mcg now, and last tsh was 1.5.

I'm vitamin d deficient, and b12 (pernicious aneamia) on 3 monthly injections but still feel pretty constantly exhausted.

Good luck with the battle.

EtVoilaa · 21/08/2023 14:33

GoldenKiwi · 17/08/2023 20:49

Hi, my TSH was 0.46 on my last blood test and I am on 100mcg of levothyroxine.

I feel okay but still have waves of tiredness and my hair is still falling out quite a lot.

Wouldn’t such a low level indicate an overactive thyroid?

FirsttimemummyLDN · 21/08/2023 15:36

I generally push to have regular tests to check my medication is on course. Every 6 months usually, more if I am feeling ‘off’, currently every 3 months as I’m pregnant.
my experience with dosage is that GP’s generally don’t seem to know how to medicate within ‘normal’ range for already medicated patients, if TSH is around 4 they don’t want to increase, I spoke to an endocrinologist as part of my pregnancy who said he wanted it as close to 2.5 as possible…and should be post baby also. I’ve found that when pushed for this value GP will generally ask if I’m happy to up dosage and reassess 6 weeks later.e.g extra 25 of Levo everyday, or every other day. I find this works for me but I am always prepared with my numbers (look at blood test results in the app beforehand) when I speak to the GP. Hope this helps!

ReeseWitherfork · 21/08/2023 15:38

Blood tests every 6 months, no idea what my latest results were. But they tweak my meds every now and again, and it always feels right, my body knows when somethings up before a blood test confirms it. It feels well managed.

Original poster
PartnersInCrime · 21/08/2023 15:39

Thanks all, definitely don't feel right, but lots of overlapping causes which could be the culprit. Going to get some bloods run again soon and see what's what.

OP posts:
GoldenKiwi · 21/08/2023 18:28

@EtVoilaa I think the 'normal' range is 0.35 - 5.5, so I'm within that. I definitely don't have any symptoms of it being overactive.