Share with me your experience of underactive thyroid, and the medication please.

[YepItsAnotherOne]

Morning all. Would love to hear of people’s experiences with under active thyroid and the medication that is prescribed.

I went to the doc recently as found a lump in armpit, have a breast clinic referral and waiting on an appointment.

I had bloods as part of this and I received a call from the clinic at 8pm last night. It was another doctor in the clinic who had been looking at results that came in. Said while I wasn’t his patient, he needed to contact me asap and tell me I have underactive thyroid and I need to get on medication today. He sounded really concerned 😳 I was a bit blindsided by the call so didn’t ask for specific levels unfortunately.

Ivebeen looking up the signs and symptoms and have a number of them. Things are clicking into place in my mind but I’m also trying to be conscious not to attribute everything I’ve experienced over the last few years to this diagnosis, as that is probably not helpful.

Would love to hear other people’s experiences of low thyroid, what were the symptoms, why were you tested and how did you find taking the medication afterwards.

Thanks in advance all 😊

I was diagnosed 10 years ago. I had vague symptoms and requested bloods. They were ‘borderline’ at the time (raised TSH, low normal thyroid) but I was not started on thyroxine for a couple of years until my thyroid levels were low. There is a lot of discussion about whether you should be started on thyroxine when you’re borderline but generally if it’s being managed at GP level it can be difficult to start until the thyroid level is low.

im now on 75mcgs thyroxine. I can’t say it’s made a huge impact on me but it’s got no side effects at all so I’ll carry on with it.

Remember you now get all your meds free (not just the thyroxine) . Your GP practice can provide you with the form that you and they complete and sign to send off to the NHSBA and they will send you the exemption form. You then tick the back of the prescription form to say medical exemption. The pharmacy rarely ask for my card but to be fair I’ve usually gone in for thyroxine plus 2 other repeats I get and they know that thyroxine gives you free prescriptions. However it is picked up by the NHS. One time I went to collect my prescription and I didn’t have my glasses and ticked the box saying I had a prepaid certificate and then I got a letter from the NHSBA complaining I didn’t have a prepaid certificate!!! Fortunately though it was easily sorted when I explained it was human error and I’d ticked the wrong box.

Worst case scenario hypothyroidism can cause coma and death if untreated which would be why they were taking it so seriously.

Best to take levothyroxine first thing in the morning with water and don't eat for 30 minutes afterwards (or drink coffee/caffeine).

When I was first diagnosed I was quite upset that I was going to have to take medication every day for the rest of my life, but it doesn't bother me so much now. Just have to monitor annually and occasionally adjust doses.

Starting on the lowest dose is normal because they don't want to risk tipping you into hyperthyroidism instead.

I developed it during the pandemic and obviously non-covid medical care was difficult to access then. I got one of those blood tests by post, and was notified I had an underactive thyroid (I had TSH in the 90s). I still had to get another blood test with my GP before they would prescribe thyroxine. I remember, it took ages to get the medication to the right level and for me to feel human again. Symptoms were very dry skin, weight gain, total brain fog, crippling headaches, depression and towards the end, hair loss. Hope you can get it sorted out soon.

I was diagnosed just under 15 years ago after an appointment about constant tiredness. Was put on 50mcg. That was raised to 100mcg during pregnancy and came back down to 75mcg after birth.

Unfortunately it’s had no impact on my tiredness levels. I take it because my body needs it and I’m ok with that, but there have otherwise been no noticeable benefits in my everyday life.

Prescribed (levo) thyroxine on 18th November 1991
I’d blown up like a ballon according to Dad who saw me after a tour of duty, Periods started then aged 10 I was so unlucky.

I remember my parents and doctor screaming at me at the early 00’s when in my earlier twenties I was wrong for missing Levo

annual fissure developed aged 18 which no one medical has ever got on top of.

The current gp lives in a fantasy land; the under active thyroid disappears and all that is rocking in their world - the last 5 years they’ve are meant to have not been embarrassed why a gynae consultant in 2024 wrote to them saying you do know this patient is out of whack. I saw a female gp who said I was a pest in 2025 (a month before ending ending up in hospital with necrotising fasciitis) when she wouldn’t treat a uti I thought at least I can get my thyroid tested. Which came back oh abnormal 1st April 2025.

Wound not surprise me if they don’t realise it isn’t the diabetes it is the thyroid making me excempt for medication certificate.

but according to my gps under active thyroid in your early 40’s just flys off of its own accord - and pigs do fly, I reserve my thanks to the doctors who thought outside the box in 1991.

Thanks again everyone, great to read of the good experiences and effects, as well as the ones who had no discernible effect like @ThemUnsYouseUns, it’ll help to temper my expectations.

And thank you so much for that info @reallyalurker- I take a multivitamin every morning and had put the tablets beside them so I’d remember to take them! Thankfully read your message first 😊 I’ll take the multivitamin with breakfast later in the day and sign up for that newsletter this morning.

That’s amazing that you get all medications for free @Spidey66- I’ll have to look up how that works. Unfortunately I’m not in the UK, but my month prescription yesterday did only cost me €5 which isnt too bad.

I was a bit taken aback when I realised this is likely a medication for life as well @decorationdaybut having read most people have little to now side effects has really helped.

@MujeresLibreshave all of those symptoms now subsided that you have found the correct dosage?

Sorry you had such bad experiences @Letloose2024x

Day 1 today, will keep an eye on how I’m feeling. Have seen many people mention they did not see any difference until 4 to 6 weeks in so will keep that in mind.

Glad the multi-vitamin information was helpful. I'll post here an image of the article in the newsletter. (It's under review by Mumsnet, hopefully will appear in a bit.)

So ive received my bloods this morning and my TSH is 16.3 and my Free T4 is 7. I don’t see any note of a TS3. My cholesterol is also slightly raised at 6.5.

From what I can find online, it appears this has probably been going on for quite some time.

That's more than high enough not to be regarded as borderline. I think the range goes up to 4 or 5 depending on lab (and yes they do vary).

There's evidence to indicate that there is a correlation with low vitamin D and levothyroxine uptake/abiloty of the thyroid to work optimally, so ot's worth asking for your Vit D levels to be checked. I think the bottom of the range is about 50 and UK doctors won't recommend anything if it's in the low 50s, but that isn't optimal and you need to get it up to about 90. I do that with 2000 in the winter and 1000 in the summer. It maintains. You can also request a high dose for 4/6 weeks to get it up quickly, and then maintain. Maintenance dose is as cheap as chips but the NHS will only prescribe if well under the range. Don't take levo and Vit D together - at least 4 hours apart.

Those levels indicate that at the review the GP will titrate upwards. They've started at a low dose so that your body has time to adjust re heart and pulse, etc. I imagine your Dr will increase to 50mcg at the next appointment.

If you have the money, it may be worth investing in a couple of appointments with a physician who specialises in auto immune. T3 isn't automatically tested in the UK but privately there is also a blood test available to indicate if you naturally produce the hormone associated withT3 which indicates whether you need the addition of, I think Liothrinine. Some patients need it, for optimal response, others don't but here in the UK you have to pay to find out.

I have no clinical training. I've just lived with thyroid disease for 36 years and have read every edition of the BTF newsletter. If you become a member, you can submit a question to their experts.

Good luck and if it's at all reassuring, I'm now 65, healthy and it ilhas had very lottle impact on my life except for an annual blood test and since about 2000 the faff of 28/56 day prescribing.

Thanks so much for the time you took to post this @RosesAndHelleboresits really helpful, particularly around the Vit D as there’s a lot of osteoporosis in my family as well. I’ll start taking more vitamin D ask them to test for this too when I’m back for bloods in 3 weeks time.

I’ll look into the auto immune physician and/or endocrinologist as well.

And it is reassuring, thank you. The doctor kind of blindsided me and sounded so concerned, but the more I read and hear stories like above, actually the calmer I am about it. Seems totally manageable, really glad it was picked up and fingers crossed the medication might give me a little boost of energy, reduce the constant brain fog (or even help me drop a few pounds! 🤞😅)

I have taken levothyroxine for nearly 10 years. Generally under control levels only a little loopy when pregnant which was monitored well by doctors.
However, I am ALWAYS cold. My skin is dry and my hair goes through stages of being brittle and breaking. I am always bloated but find reducing dairy, gluten and ‘heavy’ carbs does help a bit.
I find the tiredness crushing at times but intermittent iron supplements do help.
what really does annoy me is that my GP will only give a months supply of medication at a time, like who is going to willingly overdose on levothyroxine?

@Seahorse111 mine at least does 56 days but it's bonkers. My dose has changed once in 36 years! It wastes GP time, Pharmacy time and my time. GP's constantly complain about paperwork and over work. Here's a saving they cd make

@RosesAndHelleboresi know it’s madness isn’t it! Even 6 months worth would save them a lot of time and hassle as that’s how often they call me back for a routine blood test for thyroid anyway. Also I am forgetful and often realise I am down to 2 days worth and then have to ask for an urgent prescription so the probably hate me anyway

I was on liothyronine in addition to levothyroxine for quite a while and, yes, you do take it alongside levo, although at different times of day. The levo is long acting and the lyothyronine is fast acting as it doesn't need conversion, so ideally you need both.

I'm now on Armour Thyroid, which is a naturally desiccated medication, plus 25mcg of levo. I take the Armour first thing in the morning, a small additional amount late afternoon (when I remember) and my levo at night.

Good luck with your endo. It was life changing for me.

I was diagonised with an underactive thyroid some years ago. I still feel tired and I am overweight.

I was having gynaecology investigations when a routine blood test highlighted an under active thyroid more than ten years ago. I had been very tired, was always cold but hadn't gained any weight. I was immediately started on Levothyroxine and referred to an endocrinologist. I can't remember the starting dose but I've been intermittently stable for many years then needed to increase or lower the dose. I have a blood test every 12 months and the medication is adjusted accordingly. The last few years I've gone up to 125 mcg, then down to 100 mcg, then100 mcg one day and 75 mcg the next. In January I moved down to 75 mcg daily.

I was diagnosed with underactive thyroid in my 30’s and have been on levothyroxin for 20 years. Symptoms were hair loss, bone crushing fatigue, rapid unexplained weight gain, muscle cramps, my whole system just slowing and slowing…. When your thyroid hormones are out of sync you feel rubbish.

When you first go on levothyroxine you can have some ups and downs whilst they get the dosage right. Thyroid meds build in your system gradually so you’ll probably not see a difference for a couple of weeks. And levels may be adjusted up or down for the first few months until things stabilise.

Once things have stabilised, you’ll feel 100x better. It’s the easiest condition in the world to manage. I literally pop one tiny tablet every morning and get on with my life. Medication, when at the right dosage, has pretty much no side effects because it’s a synthetic version of a naturally occurring hormone. If you get pregnant your levels have to be monitored really carefully and often they will increase the dose for a while and wean you back down after childbirth. I also found my levels needed adjusting as I hit menopause. Otherwise it’s honestly not a big deal at all….

I’ve had it for 12 years and as long as I remember to take medication it’s a non issue

the only real impact has been having consultant led pregnancies and now I have to remember to mention on travel and health insurance applications

i dont really have any symptoms any more

One good thing is you can get a medical exemption card which means free prescriptions for anything, forever
it’s crazy really, most cancer patients don’t get that

Yes, apart from the weight gain..!

Similar experience to other posters. I was late 30’s when I was diagnosed and I thought I was just tired with work and two young children, but it turned out that my thyroid was practically moribund. 😂 Apparently pregnancy can trigger thyroid issues in some women.

My main symptoms were tiredness and cold hands and feet. Like you, I was started in a low dose and it was gradually raised to 125mcg. I have blood tests every six months and it’s adjusted as needed.

I had more energy after two weeks of Levothyroxine and I don’t get cold extremities anymore. My weight wasn’t affected- I’m 51 and gained a few pounds since entering menopause, but that’s about it.

I’ve been on 150mcg thyroxine for just over half of my life, I’m 52 now. I first went to the doctors because I was so tired, I remember making a cup of tea and sitting down to finish squeezing it out, I was so cold that I had the heating and fire on all the time, people used to comment on it when they came in. I still managed to have 2 more babies with no problems. I’ve always been a bit overweight but this last 18 months I’ve managed to loose 2’stone, nothing too drastic, just sensible eating. I think I always thought what’s the point because it would be so hard but it’s not. The doctors alwaus seemed to want to under subscribe me, they’d want me to take between 100-125 after my blood tests, I’d be so tired I’d fall asleep in the day and feel awful picking my kids up from school and stuff. Anyway when I’m due a blood test now, I reduce my tablets to 100mcg for a month before the tests, then they say stay on the same dose 😏
you need to make sure you’re having some decent vitamins I take Feroglobin plus and also a calcium supplement as well (don’t take these at the same time though)
I’ve given up caffeine lately and am sleeping much better
I’ve heard you’re not supposed to eat cauliflower and similar vegetables but since I oversubscribed slightly, I just ignore things like that

My ds was dx with hypothyroidism at the age of 8. He is Type 1 (since age 3) and his bg was constantly low even without having insulin. He was constantly tired and tearful. He started on 25mcg. Now in his 20’s he frequently forgets to take it without nagging and it does affect his blood glucose when he misses it. He’s now on 50mcg and he gets his levels checked annually.

The trouble with taking too much is bones lose mass. You don’t want brittle bones!

Yes, it resolved many lingering symptoms. My hair and eyebrows grew back, though that took time. The constipation, breathlessness and fluid retention resolved almost overnight on a very low dose (5mcg) of liothyronine (added to slightly reduced thyroxine).
My levels were never bad, I was lucky that I was allowed to try a higher dose of levo to see if it would help (which it didn’t).
You’re unlikely to get it from an endo by chance but Thyroid UK can help you work out if it might be useful and how to ask for it.
Good luck, it has changed my life.