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?

Yes there are links, lots of research published , but UK isn’t good at preventative treatment 😔

@thenewaveragebear1983 Have they checked your FT3 levels? Cardiologist will hopefully understand importance even if rest of medical profession don’t?

@Panackelty i don’t know what they actually tested with the thyroid checks. It’s really frustrating. I am seeing the cardiologist on 22nd Jan and I will ask them for more info. A lot of the issue is I don’t really know what to ask.

@thenewaveragebear1983

Can you get printed copies of your GP results from reception, or access online if they do that and start to keep a record, it’s what we all end up doing and it’s a revelation.
You can also join the online community for support and information, it’s really helped me.ThyroidUK online community

@Panackelty thank you, yes I will do that.

I can't believe how many people (lets be real: women) are struggling with underactive thyroids and just left to suffer! I've been pinning all my hope on getting levothyroxine, but it does seem for a lot of people it doesn't fix everything (or your GP refuses to give you enough of it)

I read a thread on Reddit yesterday of a woman (UK like us) who is on levothyroxine, is diagnosed with hypothyroidism and can't get pregnant. The NICE guidelines state when TTC or pregnant, TSH should be below 2.5, because fertility can be massively affected, and a TSH above 2.5 doubles the risk of miscarriage. This woman has a TSH of 5-6, and her GP surgery refuses to increase her dosage because they don't want to "mess with it". When she quoted the guidelines to her GP they said "guidelines don't have to be followed"....

I was gobsmacked. What is the point of guidelines if they're not going to follow them???

@DaisyCat33
Quote: I was gobsmacked. What is the point of guidelines if they're not going to follow them???

Exactly, the thyroid isn’t exactly an extra and rare organ that only a few of us have, yet GPs seem to be encouraged to treat us with contempt or ignorance. The lack of quality care causes so much misery x

My sister went to the doctor many years ago to get her thyroid checked as she was having the same symptoms as me (already diagnosed).

Our GP took a blood sample and asked if she was trying to get pregnant/want a family.

Sister said no. When her results came back they were just out of the normal range so our GP said as she didn't want a family she wouldn't be prescribing any medication.

@awaynboilyurheid yes please to the NDT info.
Can I ask general opinion here on my last blood results (privately done):

TSH 2.1 (0.27-4.2)
Free T3 4.2 (3.1-6.8)
Free T4 16.6 (12-22)

I have had issues before but not been medicated for various reasons, latest being that my results are all in range even though I have very high cholesterol and bad hair loss which are typical.
Looks to me like I dont covert T4 to T3 well so NDT might well be useful.
Sorry to read of all of you who arent being taken seriously.

@trickyex

Your FT4: 16.6 pmol/l (Range 12 - 22) 46.00% through the range, it's too low, better to be nearer to 75%

Your FT3: 4.2 pmol/l (Range 3.1 - 6.8) 29.73% through the range, even worse! Again should be in the upper third.

TSH should be nearer to 1.0.

@Juniperberries200 When her results came back they were just out of the normal range so our GP said as she didn't want a family she wouldn't be prescribing any medication.

I should know enough by now not to be shocked, but that's absolutely terrible! 😡

Updating in case anyone is interested. Today has been an awful day for me tiredness wise. I've slept 14 hours (!!) and I'm struggling to keep my eyes open now. Its absolutely unreal. I can track back how it has got worse and worse. A year ago I was a bit tired - needed a bit more sleep than the average person, but its progressed to now where sleep does nothing for me any more, I always wake up feeling like I've run a marathon and been awake for 3 days. Its really getting me down. I have no energy for anything.

I have to have an appointment with Occupational Health because I've been off work so much this year (first with surgery, now with this illness) and I've got an appointment with a doctor in January. So in the space of 2 weeks I'll be seeing my usual GP, an occupational health doctor, and a private thyroid specialist. One of them HAS to prescribe me meds right!?

I'll keep this thread updated with what happens/what advice I get from doctors!

I have absolutely no idea what my numbers are?

I was diagnosed about 18 months ago with a 'very underactive' thyroid and I'm now on 100mc of Levothyroxine per day.

I had no symptoms whatsoever though, so I was quite shocked and actually asked my GP if it was possible they mixed my blood test up with someone else's

Having said that, I just read some people had puffy skin around the eyes. I was getting that but didn't realise it was a symptom.

Other than that, no weight gain, no tiredness, certainly don't feel the cold etc.

Is a Tsh level of 3.4 ok?

@WhateverMate that’s how mine started but it was 4 or 5 yrs before I had a thyroid test, can I ask what triggered your test if you had no symptoms? Your tsh probably climbed high to keep your FT3 up so because of the thyroid test they caught it in time.

I am so sorry you are suffering so much! Doctors have to realise that by not helping with medication someone's life is being slowly destroyed. I hope and pray that you will get the help you need. Lay it on with a trowel and don't be fobbed off with anti-depressants (which will actually make things worse!).

Not really! TSH should be close to 1.0. However as it falls within the 'normal range' your other thyroid levels won't be checked. FT4 and FT3 needed to be measured too. You can get these using finger prick blood tests, such as offered by Medichecks and many other companies.

Please go back to your gp and ask to be started on thyroxine. TSH of 6 is not mild 🙈ffs it’s no wonder you feel so fucking awful. It’s not going to get better in its own and why should you be suffering for another 8 weeks until your next test.

I’ve had TSH if 6 and know how that feels, I don’t have a thyroid so they have to then sort my levels out to get me under 4

For those with digestive issues, coeliac disease is very common with underactive thyroid/Hashimoto's and can also make you feel exhausted and prevent absorption of things like B12.

helpneeded totally agree, with one auto immune disease it’s shown you can be more prone to getting another one. If you have Hashimotos ( auto immune thyroid disease) where you have raised thyroid antibodies attacking your own thyroid it often causes digestive issues, as the raised antibodies also affect the intestines.
You can ask your GP for a coeliac blood test but even if it’s negative ( lots of false negatives in this test apparently) and your having stomach issues then it’s probably gluten sensitivity and gluten should be avoided. It’s not easy,
( believe me ) but necessary for your health, it helps the absorption of vitamins and medication and reduces inflammation.
I didn’t get the test I didn’t know about testing at the time but had read about removing gluten from your diet, so went strictly gluten free for 2 weeks and my GI symptoms all improved, I’ve been gluten free for years now.

Please update and good luck I know what that kind of beyond tiredness feels like, hope you get treatment soon.

@CrunchyCarrot They also took my T4L-1.0 and Fsh-4.3..does this mean anything?
I also have low iron and calcium and some signs of auto immunity on a urine test?

I used to be like that but was massively overweight (not suggesting you are, just how I was!)

Ive since lost more than half my body weight, have had to reduce my thyroxine from 175 to 125mcg and am now your classic block of ice!

Oh I’m about three stone overweight for sure.

How did you lose it @Heyhoherewegoagain ?

I have a couple of stone to Lose and could do with some advice too.