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?

They are shocking at treating thyroid problems in the UK. My TSH levels were 6.6 when I was diagnosed with Hashimotos and I felt HORRENDOUS. I had dry, flaking skin around my eyebrows, was hardly eating but not losing weight, no libido, felt cold and completely exhausted to the point I felt like an old lady, the list goes on. In order to feel healthy, your TSH should ideally be at 1.

Most hypothyroidism is caused by Hashimotos disease which is an auto-immune disease so you should have your blood tested for anti-thyroid antibodies to see if you have it. It's good to know if you have it as if you do you definitely need levothyroxine to function. Also, taking vitamin D is a must in order to feel better.
(and selenium, vitamin B, zinc and magnesium also help).

Eating gluten is a huge no as it's similar in structure to thyroid tissue so the body produces large amounts of antibodies making you feel worse. Dairy, sugar and alcohol are also out as they create inflammation.

I had two consecutive early(ish) miscarriages, felt like hell. Every day was like wading through mud, exhausted despite sleeping for 9+ hours a night, freezing cold all the time, brain fog - just awful. My GP didn’t offer to do any tests but I felt sure something was amiss. Eventually tested privately and my tsh was around 6 and TPO antibodies over 400. I’ve never felt 100% better, but since being medicated appropriately I was able to get pregnant again and had my little boy this year. Please push for a referral to an endocrinologist. The British thyroid foundation is also a really valuable source of information. Good luck, I hope you can get the support you need.

You poor woman, all the symptoms that you mentioned and my doctor told me I was pulling my eyebrows out as if to say I was mental, narcissist old male doc, refused to also give me hrt twice.

Brittle nails that won't grow also, nearly dragging myself along, feeling faint, the exhaustion unreal and hard to describe, could be just sitting down and would have to sleep, no interest in anything, effort to even wash the dishes, same as you lost hair on lower legs (good thing) never grew back but my eyebrows so distressing but lucky always had a fringe,

Next time you go for blood tests ask for Antibodies test also as this will really show up what is going on with thyroid.
My doctor got annoyed when I asked for this and again gaslighted me and going on about mental health as if I was imagining it all.
He did not even ring me when results came through as numbers so bad and upped my Eltroxin from 25 to 50. Have to have bloods done every 3mths in first year to get the medication right as cannot just give high dose of Eltroxin in case get over active thyroid. I have had for years but doc made me feel was mad and it was my doctor at a Family Planning Clinic/Women's Clinic that I had to go to get hrt since he refused twice and the doctor there noticed my bloods and actually listened to me as I sat crying about heavy periods (as you stated this messes with periods) feeling sooo exhausted and not depressed just no energy and she told me to doctor to get bloods done for thyroid.

If my doctor had listened to me about first signs of underactive thyroid I would not have had to go through years of exhaustion and feeling dreadful, why do so many male doctors dismiss us women as if we are crazy when you know your own body and how it is.

You are NOT crazy as doctors like us to believe, so ask for antibiodies test also with thyroid ok and insist on them, as they treat us like we are mental. Do not let them treat you bad and awful that so many women have to go through this. Wishing you well as know how hard it is to not have the energy and it does not help when not listened to.

Don’t know what my levels were. I was put on 150mcg levo after blood tests. I had zero symptoms, just got tonsillitis a lot. I was only diagnosed after a gp who i’d never seen before said my neck looked swollen (the thyroid).

I was put on 100mcg in my late 20s, I think my tsh was about 20 and I mainly had extreme cold to my bones. My Thyroxine was raised to 125 mcg a couple of years ago because of raised tsh and I didn't really notice.

As an aside, those who are stating they are on a certain mg, you're not. It's mcg, doses are important.

With your blood results OP it would be negligent for a GP to put you on thyroxine based on those blood results alone.

@Whatthefluffing @Vettrianofan
same folks. It's rotten isn't it ? I've lost work because of it and they just give me levythyroxine. I'm in bed just now after falling asleep at dinner at 530pm.Take care friends!

Absolutely push for a referral to an endocrinologist my thyroid has yo-yo’d and I was being over medicated and I felt awful (symptoms were very similar) he wrote to the gp practice as he was annoyed at the glaring mistakes made

my thyroid is just slightly underactive consultant said I do not need medication but can return to take it. I have regular blood tests and have learnt to read my results myself

I have other health issues to which crosses over as does peri menopause 😬 but it’s much less of an issue that it was 10 years ago (I’m 50) symptoms now are peri

Wow thanks everyone for all your replies. Crazy how some people feel on death's door and others hardly notice any symptoms?! Mine do seem quite severe for my current results, but I guess that's how it is for some people. For me the tiredness is the biggest issue. Groggy, drowsy, foggy... its awful. I feel like I'm only half alive. Particularly in the morning - I seem to perk up a bit at night but that's not very useful.

Interesting those who mentioned losing leg hair - I've got massive patches on my calves where no hair grows any more. Hair on my head has been thinning for over a year. My parting looks awful, I've been using root spray on it!

For the person who mentioned perimenopause - I'm 33 so I sincerely hope not!

My GP has assured me if my results come back same again, he will prescribe. However I've also booked in with a private thyroid specialist I found online in case that doesn't happen (and even if it does, I think I'd like a specialist opinion!). I've got an appointment with her in January. She tests for antibodies, T3, full vitamin panel, and even cortisol. My GP is refusing to test T3 and says antibodies isn't necessary. This is the second GP I've tried at my surgery. The first said we have to wait for a TSH of 10.

I imagine I'd be waiting a long time for a referral to endocrinology on NHS? (based on my 18 month wait for an ophthalmology referral!) so I've decided to just pay privately. If I don't get myself well soon I'm at risk of losing my job. I'm also just fed up (and a bit scared honestly) of feeling so unwell.

Does anyone know if having surgery can trigger autoimmune diseases like this? I had major surgery back in May, and its since then I've slowly felt worse and worse.

I am going to ask to be referred to endocrinology at my next blood tests in feb, as my doctor does not even explain things to me. Hope you get sorted op as it is scary and horrible to feel no energy and so flat all the time.

Do you have any other auto immune issues, for me it is psoriasis (which runs in family but have under control as do not have gluten or dairy) as intolerant to both.
I do think if the body is under extreme stress it does seem to steer towards having issues and maybe your operation could have triggered something if you were lacking in certain vitamins etc and it has lowered your immune system.
Do not be fobbed off and look after yourself. No-one really understands the level of exhaustion unless they have under active thyroid themselves.

I get so angry reading threads like this. Hashimoto’s affects more women than men, and women tend to soldier on feeling exhausted, fat, blank.
I went back and forth to the GP for a decade before my TSH levels were high enough for them to medicate me. Hashis runs in my family and so I knew that my thyroid wasn’t working properly but I was constantly told that it was fine.
OP if you have active disease, eg antibodies, your TSH needs to be at the very bottom of the scale to feel well. So around 1, or even slightly below 1. I feel ill with anything over 2.
You definitely need medicating.

Thank you, me too! I've never felt so awful in my life. My fiance doesn't understand - he keeps suggesting I exercise or go for walks. Its not the kind of exhaustion that gets better with activity, it just gets worse. I end up yawning continuously until my eyes are watering and I can't see, and my brain goes all slow and I can't think. To me its like I've taken sleeping tablets and I'm trying to fight against them.

I don't have any autoimmune diseases, but my Dad and Grandmother both had/have thyroid diseases so it runs in the family.

I sincerely hope levothyroxine will make me better. My GP's surprise at my severe symptoms has made me a bit worried that this is all caused by something else. But I don't see what else it could be honestly.

Your TSH is 6.2, that’s not mild

I I have Hashimotos and when my TSH is above 4.5, I feel dead on my feet and utterly unable to function.

With Livothyroxine (I’m on 100mcg a day) I am pretty much normal other than having to very closely watch my weight

I agree with what everyone else says about seeing an endo and getting into Levo. You’ll feel like a different person once you’re medicated.

I lost nearly a decade to being undiagnosed and unmedicated, and it’s totally debilitating

Have been on thyroxine for about a decade. My thyroid was initially "borderline" but was having fairly severe symptoms which were:

extreme tiredness, sleeping late in the morning and regularly napping in the afternoon too
hair - very thin eyebrows, hair was like straw
horrendously heavy periods
always freezing cold
weight gain
constipation
aches and pains
carpal tunnel in my left forearm

Thyroid medication has helped a lot with the symptoms, although it's not solved everything. Having a dodgy thyroid can lead to other issues and i'm currently battling with high cholesterol.

TSH >90 (!) when diagnosed. Felt very tired and cold.

One thing I found helpful (when I later needed to convince a GP to increase my medication, in my case) was to give them the data showing my very low daytime heart rate, as it is a nice empirical symptom and less likely to be blamed on something else (perimenopause, depression etc). Worth checking to see if this also applies to you and then taking several days readings with you to your appointment.

My TSH was over 150 when first picked up, I felt absolutely dreadful. Been on 175mcg for the last 10 years. Still struggle with my weight and tiredness. Last blood test showed my TSH was up to 8.4 so been put up to 200mcg - my eyebrows are more or less non-existent and permanently tired.

Before I started taking levothyroxine, I couldn't function properly. Main symptons were terrible brain fog - after midday I could bearly string a sentence together and had to temporarily work part time, leaving at lunchtime for a few months until my medication was sorted out. Generally aching, bone weary, feeling of a permanent hangover (without ever drinking) and also hairloss - I would have lots of hair in my hands when shampooing. No idea what my levels were when first diagnosed - I started on 25mg for the first year or two and then increased to 50 mg.

Started in my mid 40s around the same time as menopause. Also developed Raynaulds around the same time.

Generally all stable now, but I'll have a low day where I feel more tired and achy than normal if I forget to take a daily tablet.

Hope you can get the right level of medication sorted out soon - it will make such a difference for you.

Please get another blood to check for anti-mitochondrial antibodies, also known as AMAs. I have all the symptoms you describe. Firstly my gp prescribed levothyroxine but my liver function levels on my blood tests were all wrong. My gp sent me to a liver consultant at my local hospital. They ran more extensive blood tests which came back with high AMAs. I then had a liver biopsy where it came back that I had a condition called PBC )Primary Billiary Cholangitis). Under active thyroid goes hand in hand with PBC. I now take levo and Urso, I had to have a Dexa scan for bone density and an Ultrasound scan to look at my liver and a fibro scan to see how damaged my liver is.

Theres a brilliant Facebook page called Hypothyroid Mum. Quite a lot of info on there.

If you can afford it have a private blood test with medichecks (or any other) on Thursday they have discounts. It will be around £60.
And join the thyroid UK forum they are very supportive.

Interesting. I could have a look at my heart rate, although unfortunately I take daily propanolol which lowers heart rate so I imagine my GP might dismiss that.

If my TSH goes over 3 I get more tired, feel the cold more, depressed, worse PMS, more hair loss and lose my libido. I persuaded the GP to increase my dose slightly last time it went in the upper part of the normal range, they weren't keen but after 10+ years I know what it feels like.

The information that women give on here more helpful than my doctor so thank you everyone for any bit of info that helps.
Op you need to get your partner to read up on it and find an article that explains the levels of exhaustion so he can understand.

My adult son used to say to me mum you are walking at such a slow pace and dragging yourself around as literally would be hanging onto the sink trying to do dishes was so drained. I do understand and the women on here do so please insist on the tests that people suggested here. Big hugs as know it is horrible as feel going loopy and doctors make us feel loopy and not taken seriously at all. I am in my 50's so started to stand up for myself but found hard when younger as hate confrontation but if my doctors says another thing I am going to calmly tell him how he dismissed me with my hrt twice and dismissed me years ago when eyebrows falling out and fell out and leg hair fell out and was drained. I am only on a low dose as of yet but it has helped, still not myself but better than I was but I have insomnia and this also a symptom that many have. Try to get that appt as soon as you can and write down all your symptoms on paper as if like me you will forget the most important things when at appointment.

To SirVixo great advise and you explained it great and has helped me to understand the numbers more.

My symptoms were weight gain, tiredness and slowness of mind, feeling the cold, depression.

I'm not well unless my TSH is 0.3-0.4. 0.5-0.6 I know something isn't right. 0.7+ - symptoms!

My symptoms.of undermedication:
Being tired early in the day, two p.m. at worst.
Sleeping 12.5 hours and feeling tired when I wake up.
Dry eyes
Dry skin that also cracks.and won't heal
IBS.- large colon wind, top of.small intestine inflamed.
Constipation, and then perhaps bleeding
Feeling cold that won't go away
Weight gain, oh, so much weight gain!
No appetite suppressant. I would have to eat until my stomach was physically full to feel anything.

Get my TSH right and all these problems go away.

Very similar symptoms to you. A year ago my doctor told me that my blood tests showed that my thyroid was very under active. I'm now on 125mcg of Levothyroxine and feel much better!