Tell me your underactive thyroid symptoms?

[DaisyCat33]

So I have recently been diagnosed with "mild" hypothyroidism, or underactive thyroid. My GP wants to test again in a few weeks to make sure the results are the same. If they are he is willing to prescribe levothyroxine at that point.

My symptoms are dreadful. I'm very unwell and have been for awhile. Extreme tiredness/sleepiness (12-14 hours sleep a day), tired all day, brain fog, drunk feeling, dizziness, hair loss, depression, anxiety, joint pain, long periods, the list goes on... I'm off work and struggling to even leave the house.

My GP seems surprised I'm so ill based on my results, which are:

TSH 6.22 (ref 0.7 - 4.78)
FT4 11.2 (11.5 - 22.7)

I feel like a hypochondriac because GP keeps saying I should have "mild or no" symptoms with these levels... even though it IS hypothyroidism!?

Am I being crazy here? Can you tell me your symptoms if you have this too? And what were your levels at diagnosis?

@Username947531 This is exactly the NHS GP thinking. Honestly unbelievable, on the whole they are wildly uneducated about thyroid function. Probably because its predominantly an issue with women!

This 💯
Apparently the amount of lectures on thyroid disease can be missed if a medical student visits the toilet during a lecture! And I don’t think that’s exaggerating, I was told when diagnosed you’ll have to become your own thyroid expert, sadly that’s true. Look at TPA website (thyroid patient advocacy) You need a referral to an Endo ( even though some are useless) and your thyroid antibodies tested to see if you have auto immune thyroiditis aka Hashimotos.
Your FT 4 needs to be in the upper third to fully work and you’ll need other levels like ferritin,folate , Vit D and B12 checked they all get low in thyroid disease. Good luck and do not be fobbed off by predominately male doctors.

The other think that is blatantly ridiculous is that even when diagnosed, which can take some time, the NHS goes for one drug Levothyroxine there is nada else . I know of no other life long condition, ie Heart disease diabetes, epilepsy which this is the case someone said athletes foot has more drug choices. If levo doesn’t work, it does for some but not others, you’ll be told it’s depression can’t possibly be caused by the thyroid and fobbed off. If you have a conversion issue ( body converts T4 into the more useable T3) then You have to really argue to be put on Liothyronine ( T3) or buy it yourself. it’s actually disgraceful and I believe a gender issue as majority of thyroid issues affect woman more.

Thank you

Yep. That's why I buy T3, was told I'd 'never get it'. It's a precarious way to exist, your supply can dry up, and if I get admitted to hospital, they'd probably put me on Levo, that is if they don't recoil at my TSH being near zero!

Yes I know, appalling and downright neglectful way to treat ( woman) people.
I’m on Non desiccated thyroxine but buy it myself, it’s v expensive it used to be used by NHS until the cheaper Levothyroxine came on and flooded the market. I don’t convert T4 well so have been much better on NDT.
My Endo consultant is v nice but his hands are tied he cannot prescribe it ridiculous situation, as he can see how much better I am doing since going on it.

Extreme tiredness , low mood eyebrows disappearing, forgetfulness, still have some symptoms on medication. But my doc diagnosed and put me on treatment straight away .

Tired
Cross
Fat
Brain fog
Bones ache
Depressed
Big fuck off ugly goiter to add to my big fat ugly moon head

I'm only on 50 of thyroxine and it makes fuck all difference and not one single professional gives a shite.

I was feeling very unwell with all the usual symptoms. My TSH has been raised for over 18mths and probably has been that way for at least 3yrs, TPO antibodies also raised suggesting autoimmune so not something that can be cured. GP won't medicate, I'm assuming, until TSH reaches 10 so I found I had no choice but to buy Levothyroxine and self medicate.

Absolutely! I've done a lot of research into thyroid in the past few months, because I've had all the symptoms but struggled to get a diagnosis or treatment. I was really shocked to discover that in America most doctors will prescribe levothyroxine MUCH sooner than they do over here. In fact if you ever go on the Hypothyroidism thread on Reddit, you'll see constant posts from people going "My TSH is 2.56 and my other hormones are in range, my doctor thinks I should try medication, should I take it? I don't feel that bad" - Its infuriating!!! Over here we are crawling along desperate for help and get sent away with antidepressants!

I found an interview that the private doctor I am going to see did about thyroid issues, and she said that most GPs get "hardly any" training on underactive thyroid - they mostly focus on overactive as it is considered more dangerous. I really do believe they have very little knowledge about it.

If that 5.4 you mentioned is your TSH, then you are definitely undermedicated. I have seen many people say that once on levothyroxine, TSH should be kept under 2 to feel well.

Its not your fault - its understandable that you trusted your doctors! We are supposed to be able to. Unfortunately when its a condition that isn't life threatening and only about quality of life, it gets easily dismissed.

Its been that low for ages and I will not be happy if they try to reduce the thyroxine…i do not function well at anything over 1

can’t remember the length of time ive ben on 150g but ive been taking thyroxine since 1997

i take it first thing in the morning so haven’t eaten

Just checked and its been 0. ?? since at least 2018

My GP went a bit mad with bloods if anyone spots anything on mine
I'm on 100mcg levo and started supplementing vitamin d, ferritin and folate

Thank you @DaisyCat33 and @CrunchyCarrot that's great information, I'm so glad I found you both. So doctors aren't trained in Menopause or Underactive Thyroid - what on earth is going on? They're very quick to palm you off with the 'shut you up pills' though which is what I think lots of anti depressants do to patients, making doctors lives easier, there is definitely a place for them, but they're being prescribed rather than investigating the real causes of the symptoms presented. It's so sad, for the doctors who don't know any different but mostly for the patients who trust them.

This thread has made me feel a bit better - thanks for starting OP. Feel like I've been going mad / banging my head against a wall for 5 years.

@awaynboilyurheid @CrunchyCarrot Can I ask you both where you purchase your meds from please? Dm if you prefer. Thank you!

I'm starting to think from this thread I should pay to see a private endocrinologist. Anyone have any recommendations in London?

Have you had a full thyroid panel? It’s common to not be able to convert T4 (levothyroxine) to T3 and so if they’re just checking TSH they’re missing part of the equation that can easily be treated.

As others are saying, you should be treated OP.

And for others being treated but still feeling like crap, you need a full thyroid panel as it’s not uncommon to not be able to convert T4 to T3. TSH can look fine but is not the full equation. The NHS is behind the times for this, it’s frustrating.

This has been an interesting read.
I know next to nothing about the thyroid and I have cancer there at the moment. Well I say 'there' but i had to have it removed.
Am on 200 levo and my tsh is 5.84 and I think they are aiming for it to be under one. Is assume the levo will go up until that level comes down?

I’ve seen an endrocrinologist who said I’m prime candidate for T3 but where I am it can’t be finder, so I presume so. They are kind of like what do we do with you? 😂

Do you mean they can’t prescribe it or it’s not available? Maybe privately?

About 7 or so years ago T3 was exhorbitantly expensive due to manufacturers hiking the price by a huge amount. The manufacturers were abusing the NHS purchasing rules to make unbelievably excessive profits with these drugs. For comparison, in Germany 100 x 20 mcg tablets of T3 cost just 30 Euros, but in the UK they cost £922!! The NHS simply could not afford to keep paying that price, well no-one should have to!

Because of the huge cost, T3 began to be withdrawn and replaced with T4 (clearly unsatisfactory for those who don't convert well or don't tolerate T4). There were petitions and consultations, and a lot of angry patients. Eventually the price was brought down but the restrictions to prescribing remain.

https://www.gov.uk/government/news/drug-company-accused-of-abusing-its-position-to-overcharge-the-nhs

https://hansard.parliament.uk/Lords/2022-07-06/debates/932D966B-6112-4426-9456-117D790DE084/ThyroidPatientsLiothyronine

Current advice for prescribing T3 (liothyronine)

https://www.england.nhs.uk/long-read/liothyronine-advice-for-prescribers/

If you read it you will see how it's recommended to withdraw T3 if possible and get patients back onto T4 monotherapy.

Sorry, could be prescribed privately but if I lived a few miles north I could have it on the NHS, no one can give me a figure for how much it is so I haven’t looked into it as it’s more than likely unaffordable for me sadly

That’s awful. It really pisses me off that an issue that’s so common and shouldn’t be expensive to treat is so hard to resolve. I believe it disproportionately impacts women too (which says a lot about the substandard treatment). It can also cause issues with getting and staying pregnant.

ETA it’s also really hard to advocate for yourself when you’re suffering from the symptoms of hypothyroid. Feeling tired, brain fog, etc. etc. Trying to fight with a doctor about something that you shouldn’t have to understand more than they do is so hard. There are obviously some amazing doctors out there, but this is a common problem with thyroid issues.

ETA for @Whatthefluffing

Ha, have been on levothyroxine for years and still feel like shit every single day. Constantly exhausted, very fatigued and it never lifts. Been like this my whole adult life so far. Now in my 40s.

If only medication was an instant fix for all!