What was your main symptoms of thyroid issues? - Thyroid UK

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What was your main symptoms of thyroid issues?

healthiskey profile image
43 Replies

I suspect i have thyroid problems and i'll be getting tests done as soon as possible. Just wondering what peoples main symptoms were/are so i can compare them to mine. Thanks.

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healthiskey
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SeasideSusie profile image
SeasideSusieRemembering

Healthiskey

There are said to be something like 300 symptoms of hypothyroidism and people will have different ones. I think possibly the most common one may be fatigue, it certainly was with me, plus weight gain and puffy face (probably mucin).

Here is a list of signs and symptoms on ThyroidUK's main website

thyroiduk.org.uk/tuk/about_...

healthiskey profile image
healthiskey in reply to SeasideSusie

I have fatigue and a puffy face but no weight gain. I'm sort of skinny-fat though and it's very hard for me to lose the fat that's on my body even with healthy eating and exercise.

Emyloulou profile image
Emyloulou

The ones that made me go to the docs eventually where big black rings under my eyes and the fact I fell asleep driving to work 😱

healthiskey profile image
healthiskey in reply to Emyloulou

Did you also have puffy face or edema?

Emyloulou profile image
Emyloulou in reply to healthiskey

I did but by the time I was diagnosed my tsh was 147 so I’m not surprised! My brain really wasn’t working very well at the time to connect the dots

SeasideSusie profile image
SeasideSusieRemembering in reply to Emyloulou

"the fact I fell asleep driving to work "

Blimey, that's scary 😲

Emyloulou profile image
Emyloulou in reply to SeasideSusie

Very! I’m lucky I didn’t have an accident. Even then I just asked the gp to just do me an fbc because I have a history of anemia. Thankfully he did the lot.

healthiskey profile image
healthiskey in reply to Emyloulou

Yeah thank god. I have symptoms of anemia but my iron levels are in optimal range.

Well I was falling asleep in the bathroom!! Joint aches especially in the hips, shoulders and knees. Very little concentration - had to read things a dozen times before it sunk in, slight hoarseness in throat etc. Felt like 💩 really, still do...

healthiskey profile image
healthiskey in reply to

Sorry to hear that. Have you not started treatment yet?

in reply to healthiskey

Yes I still struggle...

greygoose profile image
greygoose

Weight gain, weight gain and more weight gain! All over my body. And, terrible skin - acne at 50! But, what drove me to the doctor's was terrible lower back pain.

healthiskey profile image
healthiskey in reply to greygoose

My skin gets pale, redish, sort of yellowish in parts too and my eyes start bulging and get puffy and bloodshot and the whites of my eyes get greyish And i just look washed out looking and sickly. Also my face gets puffy too and loss of collagen. Also i get lower back pain sometimes too. I'd say like once every few weeks on average.

greygoose profile image
greygoose in reply to healthiskey

Unfortunately, my skin just used to get red! So people, including doctors, thought I was a picture of health! Weird symptom, but I don't get red at all since I started treatment.

healthiskey profile image
healthiskey in reply to greygoose

ppl think im healthy too just because my body is in decent shape and i'm lean.

greygoose profile image
greygoose in reply to healthiskey

They don't have any idea, do they! Nobody thought I was in decent shape, though. They just thought I was a lazy pig who ate too much and never moved! We really have to stop judging people on their appearance. :(

I once asked a doctor to test my ferritin. It was a hot day, and I'd had to hurry to get there. And he looked at my hot face, and laughed. 'You don't really think I'm going to test your iron with a red face like that, do you? Of course you have plenty of iron!' So, after that remark, I was red with embarrassement! But he got his, don't worry! lol

healthiskey profile image
healthiskey in reply to greygoose

I don't even have any diagnosis yet i'm waiting to do my tests. I want to be diagnosed with something though because i've had these symptoms for years now and it's been very debilitating physically and mentally. I had the puffy, pale, red face with bulging eyes etc since i was like 15 and i'm 21 now. It's horrible having them symptoms at a time when you are usually so self conscious anyways about how you look. Also put on top of that the list of other physical and mental symptoms from whatever health issue i have it just made things hell and i was told it was just depression and low self esteem for years. I'm just noticing now when my health is having a bad flare up my neck seems to look like that of a person with thyroid issues too.

I hate doctors like that. They get so smug that they think they can just diagnose you without any tests nearly. I'm glad he got his lol. How long has it been since you got diagnosed?

greygoose profile image
greygoose in reply to healthiskey

Well, I was 55, and now I'm 73. So, 18 years. But, I'm pretty certain I've been hypo since I was at least 8 years old. No-one ever tested my thyroid until I was 55. :(

He certainly was smug! And he had no idea what he was doing. He wanted me to take iodine. I said no. He said, 'now, look here! Let's be clear what we're doing here. We're trying to kick-start your thyroid back into proper function.' So, then it was my turn to laugh in his face. I said something like 'well, if your name is Lazarus, you're welcome to try, but my thyroid has be dead for a long, long time!'. You should have seen the look on his face. He just said 'Oh.' All the smugness gone out of him. But, the show-down came some time later, when he wanted me to take something containing soy. And, refused to prescribe me T3 because he didn't know what it was! Although, at the time, I was taking a T4+T3 combo, called Euthyral (France only) but wanted T4 and T3 separately for more flexibility. So, then, I really did tell him what a useless lump he was, and I was off to find someone who actually did know what they were talking about, and flounced out. Very satisfying. Until I reflected that that left me without a doctor of any sort, and no-one to write my prescriptions! Oh, well, water under the bridge… :)

healthiskey profile image
healthiskey in reply to greygoose

Haha good that you got him back! How has the treatment for it worked for you by the way? Are you fully symptom free or do you get flare ups still? I'm not too sure how the whole treatment process works.

greygoose profile image
greygoose in reply to healthiskey

Treatment doesn't really affect the Hashi's. You're just replacing the hormone that your damaged gland can no-longer make enough of. But, as my thyroid is not dead, I don't suppose I have any more antibodies. Besides, my TSH has been suppressed for years, so that would reduce the flares, anyway. You have to have a working gland to have a Hashi's flare.

No, I'm not fully symptom free. The mucin - reason for my weight-gain - is still there, and will start swelling if I don't stick to my treatment regime. And, I'm still quite tired, have a bad skin and trouble absorbing nutrients. But I put that down to being hypo for so long without treatment. But, I survive. :)

healthiskey profile image
healthiskey in reply to greygoose

That shouldn't be the case. Your doctor shouldn't stop until they find a way to get you symptom free. Hopefully you get there.

greygoose profile image
greygoose in reply to healthiskey

Oh, I haven't seen a doctor for years! I know far more about it, now, than any doctor I've ever seen. Been self-treating for about 10 years, but last saw a doctor for something else in 2014. And he was so ignorant it made me weep! I asked him to test my testosterone, and he said 'but you're a girl, my dear' with a silly grin! I ask you!!!

healthiskey profile image
healthiskey in reply to greygoose

Wow i haven't met a doctor that bad before. If you find the right doctor you never know they could end up helping you become symptom free.

greygoose profile image
greygoose in reply to healthiskey

I very, very much doubt it! I've seen the best that France had to offer. He taught me a lot, but even he had huge gaps in his knowledge. Life's too short to go from doctor to doctor, in the hope that something might change. I've seen so many of them already, and they're all much the same. And, having been hypo for so long without treatment, is bound to take its toll. Not everything can be fixed. :)

healthiskey profile image
healthiskey in reply to greygoose

As long as you can be happy even with it that's all that matters i guess.

greygoose profile image
greygoose in reply to healthiskey

If you're looking for perfection, I'm afraid you just might be disappointed. You haven't actually started on this journey, yet. You don't really know how hard it can be. Nor how ignorant most doctors are when it comes to thyroid. I'm not having some self-important idiot in a white coat, messing with my dose that's taken me years to sort out, just to see what happens. Because that's what they do. Leave well alone, I say. I am 73, after all, and hardly likely to be skipping around like a two year-old. Unless someone comes up with a revolutionary new 'treatment', I think I've gone as far as I can with what I'm taking. I've tried every combination in the book, mixing up T4, T3 and NDT, different brands, different doses, different combinations. This is as good as it gets, for me. I'm pretty certain of that, as far as thyroid hormone replacement is concerned. Now, I'm trying alternative approaches. CBD oil, for one. I'm having some good results - wouldn't get that sort of treatment from your average endo/GP, and alternative doctors don't seem to know much about thyroid. I've not given up, by any means, and I wouldn't go as far as to say I'm happy about the results, but I'm too old to believe in perfection, and not prepared to waste any more of my life in its pursuit. :)

healthiskey profile image
healthiskey in reply to greygoose

I could live with all the symptoms i have now if it wasn't for the facial changes. It wrecks how i look and i get extremely low self esteem from it. So i'm not really searching for perfection either just enough to be able to live my life somewhat normally.

in reply to greygoose

😁😁😁 what an @sshole...

greygoose profile image
greygoose in reply to

Oh, I've seen so many of them! There's no way I'm going to jump back into the arena to see some more. lol

in reply to greygoose

Acne rosacea? Weight gain both I can relate to 😲 ...

healthiskey profile image
healthiskey in reply to

I don't get acne really and if i do it's just a few spots, and i don't get weight gain but i do get fat like i'm skinny fat. I'd rather have just acne then the facial symptoms i actually get.

Matt8394Alien profile image
Matt8394Alien

Mine was fatigue. I was at university at the time and was falling behind on course work as I was drained of energy non stop and wanting to sleep all the time but had and still have insomnia. I can loose weight and gain weight easy which seeems to fluctuate depending on season. Over all body aches. Went to GP and he said I had hypothyroidism and had me on 25mcg for I think about two hours. I felt even worse and that’s when I found this site and realised how shockingly bad the NHS is at treating it.

healthiskey profile image
healthiskey in reply to Matt8394Alien

Sorry to hear that. Don't most people go into remission once treated though?

Matt8394Alien profile image
Matt8394Alien in reply to healthiskey

I’m still undermedicated at 75mcg and had blood work done this morning as my new GP said she will work with me to get it under 2. I feel worse then before. I get a wave of feeling ok and awake and then days of zero energy. Currently it’s at 4.28 which is way way unacceptable. Thankfully GP has also tested me for full blood work including anemia, mineral levels etc.

SlowDragon profile image
SlowDragonAdministrator

My actual reason for going to GP was palpitations.

Other symptoms, that I had ignored for ages

wearing 3 jumpers and sleeping under 3 duvets, even in summer....I just thought that was normal!

Also frequent loss of circulation in fingers and toes, not necessarily only when it was cold ..... I thought that was chilblains

Weight loss, can be common in early stage of Hashimoto's, which I was of course delighted at. Also meant my GP initially thought I was hyperthyroid

Weightloss didn't last.....

Plus butterfly rash across face, which they thought was lupus, but it was due to Hashimoto's

healthiskey profile image
healthiskey in reply to SlowDragon

I get really cold too even in summer sometimes and i get paler and cold hands and feet like 70% of the time. I get heart palpitations too. Weight loss happens for me very easily too right now but it's mostly muscle loss because i still end up having fat on me and not seeing much definition in my body even if i go under weight.

How long ago have you got diagnosed and how is your treatment going for you?

SlowDragon profile image
SlowDragonAdministrator in reply to healthiskey

Over 24 years ago, most are not as complicated as me fortunately. Now doing well, thanks entirely to help from this forum.

Details on my profile

healthiskey profile image
healthiskey in reply to SlowDragon

That's good to hear. Are you symptom free now?

SlowDragon profile image
SlowDragonAdministrator in reply to healthiskey

Now is by far the best it's been since diagnosis

healthiskey profile image
healthiskey in reply to SlowDragon

That's great! What does your treatment look like?

humanbean profile image
humanbean

I'm like greygoose - I think I've been hypothyroid since childhood. I got my first prescription for Levothyroxine aged 53, and I'd had to beg and plead for it. But within three months I'd decided to treat myself, because I realised that any increases in dose would be a fight every step of the way. I've never regretted going it alone.

Some of my main hypothyroidism symptoms were :

1) Fatigue that nothing would improve, it didn't matter what I ate, how much or how little exercise I got, or how well I slept. I went to sleep feeling terribly fatigued and woke up feeling just the same.

2) Along with the fatigue, I couldn't raise my arms above my head for more than about 2 seconds. My arms were too heavy. I also had legs that felt like they weighed a ton, and going upstairs was agony. I had very little stamina most of my life, and none at all in the years before I got my first Levo.

3) My feet and ankles burned when I got out of bed in the morning. I also couldn't bend my ankles. Getting downstairs was excruciating. It would take about an hour or so for my ankles to become more flexible. The burning would also reduce slightly but never went away completely.

4) At the very minimum I've been "podgy" all my life. But I have also been frankly fat for quite a big chunk of my life too. My eyes have always looked very small and hooded because the flesh beneath my eyebrows has been bloated and puffy for as long as I can remember.

5) I first developed acid reflux as a teenager, probably because of low stomach acid, but naturally it was treated as if I had too much.

6) My "brain speed" has always been slow. I'm not stupid. I just can't think fast. So doctors and other bullies ran rings round me for years. Practically every symptom I ever had was dismissed. The only ones doctors believed in were the ones they could see.

7) I was depressed and anxious for all sorts of reasons, but I think being hypo was at the root of a lot of it.

8) My temperature control was poor. I always felt very, very cold, particularly my feet. But in addition to this I would sweat gallons at completely inappropriate times - I could be shivering and sweating at the same time.

9) Tinnitus.

I did have other symptoms, but the above cover some of the ones that bothered me the most. Some of these have improved or gone away having treated myself for a few years.

healthiskey profile image
healthiskey in reply to humanbean

That must be really hard for you. I'm glad you got rid of some of the symptoms. It seems like everyone has different symptoms but fatigue seems to be a common denominator in most. I have fatigue also but it's not severe. I really can't wait to just get these tests done and hopefully get a diagnosis so i can treat myself and hopefully feel a lot better than i am now.

in reply to healthiskey

Good luck 💊

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