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?

I can’t remember what my TSH was when I was diagnosed, but for me, tiredness was the main symptom, plus being cold.

I’ve been on 150mcg Levothyroxine for several years-I started lower but it was gradually adjusted up- and it’s made an enormous difference. I hope it does for you too. 💐

Its so difficult to get correct diagnosis and treatment, please sign and share wherever you can this important petition by a leading endo to improve this https://thyroiduk.org/please-sign-this-important-petition/

@PinkCyclamen my resting heart rate went as low as 33 bpm last year. It’s now averaging 44. They’ve referred me to a cardiologist but will not treat my thyroid because I’m only subclinical. They’ve even acknowledged that the rhr is a main symptom of underactive thyroid, but won’t treat it.

Don’t let anyone make you feel like a hypochondriac. My levels were 5.5 when I went to the GP as I was constantly off work sick, so so unwell. I’d fall asleep in my Dads car as soon as he picked me up from work. Just an office job, not that taxing. The GP told me my levels were fine and dismissed me. A few months later I ended up in hospital with levels around 8 and I almost slipped into a coma. I was sleeping 16 hours a day. I was off work for 8 weeks which felt like a lifetime and I felt so guilty and pushed myself to go back although I couldn’t manage a full day. I shouldn’t have done as I developed ME which I’m now battling for life. My worst point was being bed bound for 8 months. Get medicated, and for gods sake rest. Nothing is more important than your health. Once you lose it, it’s hard to get it back. I’m only on a really small dose every day but it keeps it at bay. People scoff at the levels I had and the low dose of levothyroxine but different peoples bodies work differently. For me between 2 and 4 is optimum. Anything over that I start to feel poorly. Whereas I know some people who have levels of 12 and are fine.

What are they teaching these GPs?!

Mine is adamant i have subclinical hypothyroidism and needed to fight for levothyroxine. But I've always danced around top level of TSH or just under. I had to sneak in a TPO test with the nurse and it was in thd hundreds! Still GP said that's nothing to worry about as TSH in range (just about) and was cheesed off I'd asked for the test.

My symptoms are joint pains, limb numbness, cold, brain fog and have raynaulds. It's the oain that is my primary issue.

Over 5 years 3 MRI head/ neck scans. This month as I was finally referred to a Rhumatologist I've had a PET scan showing nothing but activity in the thyroid. She also ordered a thyroid ultrasound.

She also referred me to an endocrinologist as she suspected thyroiditis. Nhs rhumetologist refused as I couldn't possibly have thyroiditis based on my tsh/t4 levels.

Ultrasound has since shown raging thyroiditis!!!

They are OBSESSED with TSH /T4 but never look at the whole picture.

Now fighting to see endocrinologist but I'll prob have to pay for a private one as honestly the NHS is exhausting.

I don’t know my levels at diagnosis but I have low thyroid hormones. My symptoms were extreme lethargy and sleepiness (even more extreme than you, probably 18 hours a day sleeping?), hair loss, I actually lost my period and I haven’t really lost any weight despite really barely eating for months. When I say really barely eating I mean some bites of a sandwich my boyfriend is eating and a bit of juice in a day. I think with things like this sometimes it’s a bit of trial and error, and there’s an added thing in the mix which is that things like hormone levels or other blood test results might be normal for you but abnormal for others. Eg my cholesterol is extremely high but my ratio of good-bad cholesterol is superb. My dad, one of the healthiest people I know, is the same and his mother is in her late eighties enjoying an active lifestyle even though she is the same. Once phoned for blood test results and was told I might want to ease up on the cream cakes. I weighed six stone four.

Yep, sadly levo doesn't fix everything. I now self-source my own T3 and I feel better for it. Also you need to be sure you are optimal in B12, ferritin, folate and Vit D, to name a few!

I saw an endrocrinologist who said I’m a prime candidate for T3 but where o am it can’t be funded. I tentatively looked but no one could tell me a price without a prescription and I don’t think I could afford the magic drug sadly

@Iona345 What are they teaching these GPs?!

Sadly, not much at all when it comes to thyroid disease! And diagnosis, if you can call it that, is no longer via a physical exam, but by blood results and even then, only TSH. If your TSH is out of range then an FT4 test will be requested. That must be out of range for FT3 to be done. There are many physical signs of hypothyroidism, which should be checked. My doctor certainly never did so.

Then there are the ranges themselves. I don't know if it's only the UK that has the most ridiculous TSH 'normal' range. Certainly other countries have far lower upper limits. Personally I think they just pulled a number out of a hat. There is no logic to it at all. Perhaps it has to do with the fact that once you have a hypothyroidism diagnosis, all your prescriptions will be free.

This has really worried me as the last time I had a blood test the GP mentioned that one of my liver enzymes was slightly out of whack. I am going back in the New Year for another test and will definitely mention it.

@CrunchyCarrot Exactly. The fact they don't check T3 conversion is bonkers. I've been suffering over 5 years and worrying myself over MS, Rheumatism even Lyme Disease. Thyroid issues only picked up by routine bloods and then not been taken seriously since - the endocrinologist rejecting my referral was the cherry on the top. The Ultrasound on my thyroid the other week showing a ravaged thyroid - I shouted "I KNEW IT" so loudly I startled the sonographer.

I had the usual symptoms of brain fog and weight gain. I also developed plantar fasciitis very badly in one foot, which I'm convinced was related due to the general muscle aches I was having. The worst thing was the depression. I had been made redundant and felt very, very low, which made the job seeking process even harder.

I didn't have hair loss at that time, which was why I didn't initially think it was my thyroid. It did start falling out eventually, but not until I had started to be medicated with thyroxine. My mother had an underactive thyroid, so I was already fairly familiar with the symptoms.

This was during the pandemic when it was hard to get medical care for non-emergencies. I paid for one of those mail-order blood tests when I realised what it was likely to be, and my TSH was 92! On retest at my GPs, it was 95. So, no wonder I didn't know whether I was coming or going.

My TSH levels were about the same as yours, very fatigued, and ached. Just felt blergh.

I had to wait a while as my B12 was so low I had to have loading doses and see how that went first. My second lot of tests showed B12 ok but TSH level had 8n erased slightly

now medicated and feel much better

Definatly worth getting your blood checked again. It might be something and it might be nothing, if it’s ‘something’ then they can get you on the right medication.

Thank you @GenerousGardener , I need to book another blood test in January anyway as my cholesterol was too high at the last test in October - another strong link with underactive thyroid and as it's the liver which processes cholesterol it's all linked isn't it. Have lost a stone since October in an attempt to help the cholesterol situation and have all but given up alcohol completely. Probably half a bottle of wine in the last three months. But if liver is an issue, no problem knocking the booze on the head. Also taking daily folic acid, biotin and high dose Vit d.

I am never cold! Nearly over warm all the time

@CoatOfArms come back and let us know how you get on. There’s loads of Facebook groups for PBC along with a really good PBC foundation website here in the U.K. The British Liver Trust and the NHS website have plenty of info too. Hopefully you wont need them.

I have hashimotos picked up when I ended up in immunology randomly - don't ask, I was meant to be in dermatology but apparently immunology were bored and took lots of bloods!

They wrote to my GP to say I had antibodies and needed a referral, GP refused to refer
Long story but I changed doctors, still haven't had a referral but I'm on 100mcg levo and have a GP that took 25 blood tests as a baseline and understands T3

I've always assumed that they don't medicate as much as they might because cost.

Anyway, retrospectively my symptoms were constipation. That was the thing that changed. But I'd had a tendency to be overweight, thinning hair and scanty eyebrow for years.

Does anyone know if there's any news of upcoming treatments or studies? Could really do with some positive news and haven't heard anything new about thyroid problems for ages. If ever.

My symptoms started just after my 2nd started nursery in 1999 No matter how much I slept I was exhausted, I bruised easily, cuts didn't heal. I have been taking 150mg thyroxine since and it's been no problem.

@Iona345 The Ultrasound on my thyroid the other week showing a ravaged thyroid - I shouted "I KNEW IT" so loudly I startled the sonographer.

😂😂😂I know how you feel!

You can pay to get the tests done privately. This is a company that I have used and I found the service to be very quick and easy. They do a few different thyroid tests.
https://www.medichecks.com/products/thyroid-function-antibodies-blood-test

Also, have you had your iron and vitamin B levels checked?

I am on 150g thyroxine and I have just had a test which shows my tsh level at 0.01

I have to make an appointment gor the doctor to look at that or low ferritin both of which can cause tiredness so I don't know what they are going to say 😅

Tiredness and weight gain and a little cold are my only symptoms but some of those relate to pcos and low iron as well

If your TSH is that low your thyroxine will be reduced. Yet your symptoms still scream 'hypo'. How long have you been on thyroxine, and at that dose? Maybe you aren't absorbing it properly. Are you taking it on an empty stomach and not eating for an hour after?

Under active thyroid since 18th November 1991 discovered as a 10 year when docs where trying to get to the cause of why I'd keep getting tummy pains. (kept going into hospital with query grumbling appendix) and just fortunate a specialist doctor at the time was walking through the wards and asked Mum if he could test me as 'didn't like the look of my neck glands'. Otherwise I reckon it wouldn't have been discovered. As a child no one explained much, it was until the second little brown bottle of pills that Mum was told it was for life.

My main symptom was weight gain, always battled with my weight since this point. Dad came back from tour of duty and I'd 'blown up' in months as a child as he recalls.

Apparently you can feel the cold more easily (which maybe I part agree with) my hair falls out easily when washing and I've never been able to grow proper nails.

Can affects heart if medication isn't taken along with period troubles (from my rebellious years when I didn't see the point in taking medication)

I've known cousins have miscarriages before diagnosis, only seems on my Mothers side. I also was friends with a lady whose Mum would end up having hospital stays where so ill with it.

I remember something I'd seen years ago as people were taking to mental institutions instead of being treated when it wasn't as well known. I really think low mood can play a big part.

As I've got older with it the GP's tend to leave me alone. Don't know how or why I even got re-diagnosed in 2016 (huh) I queried why I hadn't been called for the yearly blood test and the receptionist just went yeah we tested you back in April 2023. (seems they check at diabetic review and that's it)