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?

@christmaspaws your FT3 is ridiculously low, it's near the bottom of the range. Ditto your FT4. How are you feeling?

What other medication have you tried? Which supplements are you using?

You shouldn’t just put up with feeling like shit…

My TSH was 69 when I was diagnosed. My main symptom was feeling cold a lot and I had really bad abdominal bloating-as if my digestion was really sluggish and food was just sitting in my stomach and not moving. I wasn't particularly tired and didn't put on weight.

Have osteoarthritis as well which doesn't help so definitely been hit with the shitty stick with other chronic issues thrown in for good measure! Doubt I will ever be working again. Have only managed so far on levothyroxine this long as I can rest when I need to most days as DC are all now in school. GPs always claim thyroid levels are "fine" (when I feel anything but).

And I take high strength vitamin D. Have for a long time. Makes no odds.

Thanks for starting this thread OP, I hope you have had a better day today?

Can I ask everyone - I've been on levo for mine for almost two years now and all my life been prone to the occasional blood shot eye which tends to go away by itself after a day. I've noticed though the last 6 or so months this has got worse and it's like my flippin eyes take it in turns each week to be bloodshot (todays is my right eye 😳). No pain or discomfort but often (not always) either precede or come after a headache. I think I may have dry eyes if that's relevant.

This thread is useful but also depressing.
I struggle too and have had issues before but cant get a diagnosis as my numbers are all in range (normal TSH but low T4 and T3), despite having high cholesterol, weight gain, hair loss and low mood.
I am thinking about going private.
@awaynboilyurheid I would also be interested to know where you source you NDT, please do dm me if easier?
Another vote for Healthunlocked for info and support.

Always tired but TBH I have other health issues so...
my FT4 dropping was the reason I got diagnosed - was 11 at diagnosis and TSH 7
Started on 25 of levo and they've upped it gradually to 100 but won't increase further as my TSH is "ok"

I went to the GP with exhaustion, aches and pains, constipation, brain fog and weight gain.

Tests have TSH at 6.3 and a follow up shows antibodies for Hashimoto. I think they'll say I'm sub-clinical because T4 is just in range but I feel poo.

From what others have said here should I be pushing for a referral given the Hashimoto. We have family history of thyroid issues particularly around menopause (which is where I am at the moment)

Hair loss, brain fog, miscarriages, trouble conceiving, cold all the time, still am.

I was prescribed thyroxine and became pregnant about 3 months later which resulted in our DS.

Currently taking 50mcg of Thyroxine and 18 years later not feeling much better but according to my GP my levels are within normal.

@christmaspaws that's what I find difficult. I have an auto immune disease as well so I don't know what to equate with which illness.

I'm just racking them up
My consultant once said he looks at me and wonders what hard to spell rare condition I will have this year to test him

So far - vitiligo, hashimotos, hidradenitis supprativa, neutropenia, cauda equina, cholinergic urticaria and just diagnosed this year with endometriosis

@christmaspaws wow that's impressive.

My mum had thyroid issues (she now had it removed because of the issues) and my entire life I have known my mum to always be hot. When we’d all moan about it being freezing - she’d have the windows open in shorts and a tshirt whilst we’d all be in about 20 layers and still cold

I thought I had peri menopause symptoms. Waking in the night at 4am in a sweat, can’t lose weight, thinning hair, anxiety.
GP did a blood test and it’s under active thyroid, when I have taken my medication for a month or so I feel better.
Mine is only ‘mild’ apparently 🫤

I have hypothyroidism and my most noticeable symptom is long and heavy periods. also tiredness (but when diagnosed I had an 18mo and have since had one more a year after that). My TSH was at 11.8 in August so my dose of levothyroxine went up to 125mg, I just had a blood test last week as my periods are heavy again and my hair is falling out a lot, but its at 2.9 so they put no action. TSH on diagnosis was 33 then 46 before it stabilised.

eta that I was diagnosed at 28.

I felt like this and adding Liothyronine made all the difference. It made me angry how many years I’d felt awful for what is a common and reasonably treatable issue.

Please sign and share, this is really important for all thyroid sufferers:

Direct petition link
https://petition.parliament.uk/petitions/642233Thyroid Petition

@christmaspaws I’m sure there’s a link with endometriosis.

Sounds just like my mum! She ended up with Graves' but before that she was always hot and flinging open windows.

I will pm those who ask about NDT it’s expensive but been a life saver
( literally) for me .It’s used in America and Canada , but sadly not the UK .
I don’t convert T4 to T3 , so although I was taking higher and higher levels of Levo it just wasn’t being absorbed and I still had loads of hypo symptoms, I wanted it to work and really thought taking it would help, it didn’t at all.
I have Hashimotos and like everyone else took ages to get a diagnosis , exhaustion (can’t even call it fatigue it was so bad) it just got steadily worse, brain fog ,hair loss all the wonderful thyroid symptoms. I don’t really feel the cold that’s not my main symptom but it varies in Individuals there so many and varied effects of having a non functioning thyroid.
My elderly mother who also has it recognised it in me long before I could get a Dr to diagnose me. Like the poster that said “I knew it “ she said the same once my blood results showed high antibodies attacking my thyroid.
One day I hope a second or third option of medication would be good for thyroid disease, as I say it blows my mind that it’s a one medication approach, Levo only and if that doesn’t work well tough, it leaves as we can see from this thread alone, so many woman suffering ill health.

NDT (Natural dessicated thyroid for those who don't know) is a real life-saver for many, it's a shame it's not prescribed in the UK. It contains both T4 and T3 as well as T1, T2 and calcitonin. Doesn't suit everyone but it should be an option. I did try it but as my T4 didn't convert well I'd still end up with T4 too high and not feeling well. T3 only was my last option.

@awaynboilyurheid I wonder if that's what's wrong with me? I have malabsorption caused by crohns so don't absorb meds properly. Am on 200mcg but feel no different with regards tiredness, hair loss, flaky skin.

Bone crushing exhaustion and fatigue
Tummy/digestive problems
Weight gain
Hair Loss
Brain Fog
Dry Skin
Feeling cold
Very heavy long periods

I am only recently diagnosed (few months now) I think I’ve been sick for years, probably 7 but definitely at least 5 years. 7 years ago I develop a terrible eye twitch and loads of my hair fell out, was also the start of my tummy issues. I thought at the time it was just stress. After the birth of my 3rd child things really got bad and I finally went to the doctor and begged for help. I was sent for bloods, colonoscopy etc and was told my bloods were normal, only thing noted was anaemia, thyroid in range but they didn’t test for antibodies, if they had I might have received diagnosis and treatment much sooner.

I then lost a little boy in the second trimester, had investigations due to the loss and again anaemia flagged, thyroid numbers in range apparently but I was so sick! My lovely bereavement midwife agreed I probably had some kind of autoimmune thing going on and said how hard it can be get these diagnosed.

Following my final pregnancy where I had twins my symptoms were worse than ever, but I put a lot of this down to being a tired mum to baby twins and lack of sleep. Then when twins were finally sleeping through I expected to get better and several months went by and still felt terrible, and went back and pleaded with my doctors. That round of bloods did finally show sub clinical thyroid but numbers only slightly on the high side was told to wait 3 months and repeat the test. 3 months later test was repeated and numbers were worse plus they finally tested my antibodies and they were high (probably had been there for years) and now finally medicated with levothyroxine but only on 25mg and still feeling terrible. Requested and increase in meds but TSH now down to 2.5 so the increase request was rejected. Just recently seen a different doctor at the same surgery and she has been lovely and has agreed to look into things further for me, I’m hopeful I may get somewhere fingers crossed.

I hate that I’ve had to get so sick before anything got done, I hate that I am still sick. I hate the numbers range seems to be the be all and end all when it comes to diagnosis and treatment. It’s a bloody shambles. I’m only 42, I feel 90!!!

Feel so sad that so many of you miscarried before diagnosis I did too although a fair few years before. Wondering if there's a link