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?

Anyone else have stiff/sore muscles (thighs), stomach aches, massive weight gain, exhaustion? When does it start to get better?

Are you currently on medication, @HoneyButterPopcorn ? I started to feel a difference in two weeks, although my dosage has been adjusted many times. If you are on medication, you might need to have your levels checked as you may be on the wrong dose.

Sorry that you’re feeling so crappy. 💐

About 3 weeks now. Week 2 of vitamin D (they rechecked my levels and realised they were about as low as they can go). Feel like sh*t! Arg.

@HoneyButterPopcorn So you’re not on Levothyroxine or something similar?

I had sore leg muscles, pins and needles in my left arm and hand and random 'jelly legs' sometimes where I would literally have to grab the nearest chair to me for a minute or two.

But it gradually disappeared after a few months as they found the right dosage.

Keep up with a high dose after
Mine were 9 in 2020, I had a high dose course. I've supplemented since then with 4000IU daily but am bad at remembering so probably take them 4-5 times a week and I've only just scraped my level up to 66

If I had been taking the standard 1000IU dose it wouldn't have done much!

I’m on Levothyroxine now but it’s a very slow burn - thought it felt a little bit better (I got to the point here I locked my office door and fell asleep face down on my keyboard - just the once!). But now I still feel weary and achey. I think o o feel better in myself (but we had a bereavement at the end of the year which was when my symptoms peaked so I’m not sure if I’m working through my grief or if the pills are taking the edge of the depression).

Not sure if anyone can advise me !
my antibodies are 817
my tsh is 4.43
I recently saw a private derm cause of a skin thing and she said it could be to do with thyroid so had these tests done but g.p says satisfactory ! My hair is brittle my skin has gone extremely dry previously very oily and im itchy like crazy on my bikini line !
feet also very dry and cracked !

TSH over 4 is out of the normal range, not by a lot but it’s not a normal result.

id go back and see another gp at the surgery, ask what they can do as you have the symptoms of hypo and your blood test is out of range in my area

https://thyroiduk.org/if-you-are-undiagnosed/next-steps/preparing-for-your-appointment/

Hello I have just started meds for low thyroid. Can I ask about speech…. Struggling to get my words out… is this normal? Will it settle. I had put it all down to anxiety and mouth tension. But finding it hard to say and form my words. Does anyone understand what I mean by that. My blood was 11.5

I’ve been on mine for about 5 weeks now. Slowly slowly becoming more human again. My consultant says that I’m in a baby dose and it will definately need to be upped so I am looking forward be feeling whole human again.

low point for me was locking my office door one day and sleeping on the floor for about 5 hours.

thyroid sucks - especially when you have to fight with your doctor to get blood tests because ‘it’s probably just your age’ 🙄

I am only on 50mg and it’s changed my life.

I know exactly what you mean. This was the main symptom for me. I spent a few months avoiding conversations and even trying to avoid reading to my children because not only would I constantly be unable to remember basic, every day words but even when I could remember a word I was constantly tripping over my words. Speaking was hard! I began to think I had some sort of early onset dementia.

The good news is that this symptom has much improved with Levothyroxine. I would say about 80-90 percent improved.

I’m not sure this is actually officially recognised as a symptom of thyroid issues (other than coming under the vague heading of ‘brain fog) but it is definitely a thing many of us experience.

underactive thyroid can make your tongue swollen (which commonly causes scalloped edges to your tongue where it presses against your teeth which makes it obvious). I'd imagine it could make it harder to talk as easily too.

I just started meds Saturday but my speech has worried me a couple of weeks. I get migraines and can’t get my words out and it feels like that. The other thing I noticed was I felt I had no grip when writing. I’ve been really worried about myself 😭

@MikeRafone
Thankyou !
I just feeling like a time waster been drs so much lol I have a scalloped tongue as well GP wasn’t bothered !!
It’s like they not connecting all the dots if that’s makes sense !
they will only listen to one problem at a time but so many symptoms!! X

My blood was 11.5

was that your T4, T3 or TSH?

if its your TSH Im in admiration you're getting out of bed in the morning...

My TSH was 69. My only symptom was a massively bloated stomach. I looked 9 months pregnant and was worried I had ovarian cancer. My bloating resolved mostly within about 6 months on treatment.
I always feel cold so this hasn't changed since I started meds! I'm underweight which doesn't help.

Londontown12

I had spoken to a gp last year and she was lovely and listen to me and what I had to say - agreed with my dose and why I wanted to stay on that dose. ( I had thyroid cancer so advice is to keep TSH low, plus I work well on the dose im on, not higher or lower) speak to gp this year after annual test and she ignores everything I say and wants to change the dose, doesn't listen, clearly hadn't read my notes as she started telling me about hyper symptoms and if I had any was to make an appointment (I had hyperthyroidism originally my T4 was 68, T3 30 so of course I know what the symptoms are and thus I knew she'd not read notes), hadn't realised id had thyroid cancer and wasn't interested in what I had to say... I told her in no uncertain terms I wouldn't do as she asked. A week later spoke to original gp and she said yes keep doing as we agreed last year...

clearly some gp's understand thyroid complains and others im not sure what they are doing?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4737508/

Its clearly set out here about suppressing TSH to prevent return of cancer, i really wasn't impressed

You could be my twin!
When I was diagnosed my TSH was 89. My gp came to the house with medication the same day that I had the blood test because they were worried my organs were shutting down.
This was 15 years ago. I now have to make sure I have keep my TSH under 1

Doc said should be 2 and it’s 11.5? T5t4? That’s my scribbled notes I took. I’m not sure I have the names right?
Also said tff should be 5 and it’s 150? A hormone?
I might have written the names down wrong? I need go in and check the names and readings.

@MikeRafone sorry to just butt in but do you mean 11 is really high? Just been diagnosed - my TSH is 141! Is there something really wrong with me?

TSH range is 0.3 - 4.2 milliunit/L. Mine was 10 before, now it’s 0.7.

Ive had Hashimotos for 18 years. I keep my tsh at 0 with the agreement of the hospital. I take 350mg t4 and 30mg T3 but this took 8 years of back and forth from hospital. When i was finally diagnosed i had a tsh of 450 and no t4 at all. Even now my t4 is only 10.

At my height i completely lost all body hair, eyebrows, eyelashes and 90% of my head hair. It never came back properly and even now when i have a flare up it happens again. My skin was so dry it bled. I.was confused, forgetful, had hallucinations at one point. Palpitations, periods that lasted for months at a time. Bleeding mouth, dry eyes, difficulty swallowing. Zero sex drive. That never came back. I'm afraid i never became my pre thyroid self. Joint pain is my first flare up sign. I'm lucky in that i only put on a stone but i cant lose it, 18 years later despite years of exercise.

The T3 manages my brain.symptoms, without it i would not be able to work. Even now every check up i have to fight to keep it.

I've also developed reynauds, granuloma annulares and am now being tested for lupus.

Gps are SHIT with thyroid. It was only after being hospitalised with palpitations that i could get anyone to believe it wasnt post natal depression.