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?

Wow! You poor thing. That sounds terrible.

I have realised from this thread that symptoms vary massively from person to person. I wonder also if T3 makes a big difference - I know its another important thyroid hormone and as NHS rarely test for it, who knows what's going on in people's bodies?

Thank you so much to everyone who has commented.

Today has been a rough day. I've been very fatigued, but more so my body than my 'head' so to speak which is a change for me. I usually find I'm very sleepy/drowsy more so than body fatigue. Does anyone else experience that? Sometimes its like I just can't wake up properly, like I'm half asleep or drugged and my head feels so heavy and woozy. Very unpleasant.

I've got a blood test a week today, and then 2 weeks today an appointment with my GP, so just got to soldier on through a bit longer. And if I don't get medication from that appointment, I'm seeing a thyroid specialist in 3 weeks! So I think I've done all I can for now. Will try to enjoy Christmas as much as I can in the meantime!

My eyebrows fell out. I could say I was tired but I was mid 50s and work very hard so not convinced re that

Horrible tiredness
headaches
hairloss
eyebrow loss
massive weight gain
weak nails
dark circles under eyea
dry eyes
colds that lingered / came with joint pain and muscle aches

Haven't time to RTFT now but I will.. just wanted to say a few years ago I got reflexology for some symptoms and issues with periods. I had a series of sessions maybe 8 or 10. I was due for bloods to check my thyroid and it has completely reversed, so much that I was bordering on overactive so had to come off all meds for a while. GP was totally shocked but said he has heard of this phenomenon before. I'm on a fairly low dose now but when I go off course again as I seem to do every few years first thing I do is book reflexology.

@DaisyCat33 I wonder also if T3 makes a big difference - I know its another important thyroid hormone and as NHS rarely test for it, who knows what's going on in people's bodies?

T3 is the active thyroid hormone. T4 (and that's what levothyroxine is) is an inactive storage thyroid hormone. We are medicated with T4 as doctors expect our bodies will convert T4 to T3 as needed. However some of us have faulty conversion due to a variety of issues, and so we never get enough T3, and as a result always feel hypo even though our TSH and FT4 values look normal.

I'm on 75mcg levothyroxine. The only symptom I had was that I struggled to shrug off a cold after three weeks (pre Covid) which was unusual, so my boss suggested I visit my GP who suggested blood tests as a precaution. I wasn't surprised to be diagnosed as hypothyroidism runs in the family, I was surprised at having no major symptoms given what I subsequently read!

OP if you're going to see a private endo in 3 weeks I would maybe not take thyroxine until you speak with them. I say this because I had to go private myself (after being told it would be 47 weeks to see someone on the NHS!) and they said it was unfortunate I was already on thyroxine before getting some additional tests. So maybe worth waiting a couple extra days to speak with them before taking anything.

Also do you know if the private endo you're seeing also practices on the NHS? If so then after seeing them once privately, they can ask your GP to refer you to their NHS practice so you don't have to pay again. You don't skip the queue but at least you know the referral will be accepted and if you're lucky the wait time will be less if it's a different trust.

When my TSH is too high I just feel so rubbish, tired, weepy it's like permanent PMT. The most telling symptom though is a weight in my chest. When the meds are right I feel the weight lift. I feel best when my TSH is around 1. It was 13 at one point 😱 the range is just that, a range, some people will feel great at 5 so the upper end of the range others like me will feel great at nearer to 1

Does anyone know if this is hereditary? My mum and brother are both diagnosed with under active thyroid and now I'm finding my hair is falling out and my nails and skin are so dry they're cracking.
Also brain fog and cannot find words I need!

Yes, definitely. My mother had it and several of my maternal cousins also.

Yes, autoimmunity is hereditary and it does pass down. Sometimes with a different autoimmune disease, but the genes are there. Not necessarily will be triggered but the potential for disease is there.

Hypo, 3 years ago from routine blood test. 50mcg dosage. I never feel the cold, struggle to sleep, don't have brain fog or fatigue. I do find it difficult now to lose weight ( also early menopause at 40) have lots of random pains and sensations, none of which are investigated because can all be related back to Thyroid. Do have a low heart rate. I'm really not sure. I know that since start Lexo I have felt more unwell than I have ever had before.....but that is down to stress and anxiety I am told....

I became unwell after having a baby.

Constantly exhausted (I was actually sleeping really well), dry skin and hair (my hair and nails were breaking), easily bruised all over my body, weight gain (and also couldn't lose), depression, anxiety.

I was pawned off for almost two years because I was a "new mum" and "thats just how it is".

All it took was one blood test.

I was absolutely raging they dismissed me. My levels were very low and I was put on 75mg levo for life.

Luckily, my levels are back to normal but I still have days where I feel really shitty and its 100% to do with hypothyroidism.

Hi Daisy Sorry to hear you have had a rough day, me too, slept most of it on sofa and still feel drained and have that kind of a feel mentally as if I have been drugged or something. Have so much to do and am looking at it all and just cannot find energy to do it and feel so guilty. Tomorrow have to go do food shop also and fri get bits and pieces and I will be floored after it all. I used to be such a bubbly person and now just feel am wandering around in a dozy haze. Hope things go ok for you and if not then you have your private appointment. Keep us updated as it is a great support and also the advice others have given on here is brilliant and wishing everyone well. Look after yourself and rest up while you can.

Ellie09 It is horrible the way we are made to feel like we are lying or mental or making it up and not listened to. Hope you continue to feel better and not fair that they did not look after you better. Hope you are enjoying your toddler and have more energy.

So true, the active hormone is the important one, but ignored by NHS, why 😢

It’s so ridiculous that they will consider all of the individual symptoms separately as they occur but not the cause so that they can prevent them. I feel I am in last century!

Does an underactive thyroid have anything to do with poor circulation? I mean aside from feeling the cold, like raynauds and having mottled skin? I have those issues plus a few symptoms others have mentioned that point towards underactive thyroid. I haven't actually been diagnosed with anything but been thinking for a while I must have some sort of autoimmune disorder but got shrugged off a bit last time I went docs so I didn't pursue it further.

Extreme tiredness like I had metal in my body, sores on my head and hair falling out, barely able to function, sickness due to trying to force myself thru the tired....tbh I still have those symptoms not to the major extreme but daily after 3 years of levothyroxine even tho they say every blood test my levels are good now

I should've RTFT...I see there is a connection. Hmm I really should go get tested now. I was literally thinking I need to leave the country and go live somewhere warm, and it could all be down to an underactive thyroid!

I feel horrendous when my FT4 is that level. And feel very quickly unwell if my levels are even slightly off. It's been really difficult as a result to get me on the right level of thyroid meds. We've fiddling around with them for about 2 years!

I've also spoken to someone who had zero symptoms with a TSH of over 100. Mine wasn't even over range and I felt really, really ill.

Some people are just more sensitive to thyroid hormone level imbalances is my conclusion.

Wow, this thread is truly enlightening, thank you so much OP for starting it.
Whilst I've educated myself fully on the menopause because that can't 'just' be diagnosed via a blood test, I've never really worried about my underactive thyroid because that is only diagnosed on a blood test??? So like many others, I've returned to the Doctors on several occasions over many years stating exhaustion, muscle aches and stiffness, hair loss, feeling cold, brain fog, constipation, feeling depressed, dry hair, dry skin, spending days in bed, no hair on legs or arms, puffy face, gravelly voice, missing eyebrows...... to have my estrogen increased (no blood tests allowed on the NHS to see if I'm actually absorbing it) but not my 50 mcg Thyroxin (which incidentally was finally prescribed via a private menopause specialist, not my GP), as the blood tests show I'm "smack bang in the middle"! Now I'm thinking in the middle of what? There's been no mention of any other numbers, only at a blood test result of 5.4 my current dosage is correct, go away, exercise more, lose weight (BMI 26) and would you like some anti depressants to help you through the worst days?

Also I have a low heart rate, have had for years, never knew it could be connected to my thyroid until this thread, yet still no doctors have joined the dots. I was also diagnosed with a cholesterol level of 8.4 when I was 40, still no link made and I never knew that could be thyroid related.

I'm also stunned that what is classed as normal range is so much higher than other countries - how can that be right?

I have learnt so much from this thread, I can't believe how naive I've been in believing the doctors knew it all and not striving to understand it more myself. I've booked a Medicheck test now to get all of my T3, T4, TSH and FT4 results.

Thankfully I'm taking estrogen in very high doses, because the rage I'm feeling right now would be at epic proportions if I weren't!

I'm currently having horrible symptoms and tested my levels privately. They were bang on normal apart from my antibodies which are nearly 500. I went to my GP straight away and he totally dismissed the antibodies, saying the NHS don't test those and they won't do anything until my other results are bad. I'm working with a naturopath/nutritionist as I have no other options at present.

It's rather like an iceberg, thyroid disease and the (lack of) diagnosis and treatment. We may think it's a simple thing, but really there's an awful lot to learn, we trust our doctors know what they are doing but in the case of thyroid disease, most do not. Diagnosis and treatment were actually better decades ago as doctors didn't rely on testing TSH only, and did proper physical exams. Then if you had symptoms you'd be put on natural thyroid extract from pig's thyroid. Once lab testing was developed and thyroxine purified and made into pills, plus doctors' lack of education about the thyroid and the wide range of symptoms it can cause (and eventual death if not medicated!!), things have gone downhill, and we're the ones who suffer.

Can't tell you how many times I have been horrified at some of the accounts I've read of lack of treatment when a person is clearly very ill. It shouldn't be that way. Add to that just how difficult it is to get T3 prescribed if you need it, and how many who have finally gotten it prescribed have had it removed again and forced back onto T4.

If you join HealthUnlocked and the thyroid forum there (which is very busy) you will find a lot of info and knowledgeable people, and can read some of this for yourself. It's a real eye-opener. When I was well I had no idea how bad things are.