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 am currently in the same position. Started levothyroxine this morning so keen to see other answers

i am very much hoping it will cure my tiredness, itchy skin and drop me a few pounds, and if it can do all that without side effects that would be lovely.

And was it the tiredness and itchy skin that led you to flag with the GP and be diagnosed?

I’ve just collected the prescription now and they’ve given me 25mcg which seems like a very small amount, judging by what I’ve read others are on. I’ve eaten already today so will start tomorrow.

I wonder should I call back this afternoon and ask for the specific levels from the blood test?

I thought I needed hrt given the tiredness and itchy skin so went in for that and the gp did a blood test first which flagged the thyroid issue.

l’m also starting on 25mg so maybe that’s a standard starting dose, and you should be able to see your test results in full in the nhs app

@YepItsAnotherOne @Pleasenotequila they start you on a low dose then can increase if needed. I've had under active thyroid for a few years now. I had my thyroid removed completely as I was overactive for a few years and it wouldn't settle down. Main downside to under active thyroid are weight gain, feeling cold, tiredness and joint pain. However not everyone has the symptoms. Good luck x

They will start you on a low dose, test you again in three months or so and then see if it needs increasing.

I was diagnosed quite early, in my 40s. It had been gradually falling on previous blood tests, so it was quite a relief when it finally hit the point where they would give me the pills. ‘have you suffered from weight gain, dry skin, tiredness?’ ask the GP. Well, show me a woman in their 40s who doesn’t answer yes to that!

It did help with tiredness, and my nails stopped breaking all the time, but my hopes that I would suddenly experience magical weight loss were disappointed. I’ve been taking it for more than 20 years, the dose hasn’t changed for a while. I wouldn’t expect dramatic changes.

My only symptom that prompted me to visit my GP was a bloated stomach and I felt like my food was just sitting and not being digested. I was so bloated I thought I had ovarian cancer so I was pleased to get an alternative diagnosis. My TSH was 69 which is quite high. I can’t remember what dose of levothyroxine I started on but my results normalised within 3 months and my stomach went down in size. I also cut out lactose and gluten which helped. I also wouldn’t expect dramatic changes.
Oh and I’d just take levothyroxine tonight. It works better on an empty stomach but it’s not going to do you any harm if you have eaten food.

My mum has it and after monitoring they found the right dose of medication for her. But regardless of my mum eating healthy and doing regular exercise she has never been able to lose weight to her original size. But it did improve her fatigue and other symptoms.

My mum went to doctors complaining of extreme fatigue after a friend advised her to get thyroid levels checked. Like you she got a call saying medication had to be started that day after she had a blood test.

Good luck and I hope the medication helps your symptoms.

I was diagnosed about 7 years ago, the blood tests were done at an NHS fertility clinic. We’d been trying to conceive for a couple of years with no luck at all. My symptoms included being overweight, low energy especially struggling to get up in the mornings, and obviously fertility issues. All dismissed by my GP when I’d previously asked to be tested for thyroid function.

I remember the starting dose of Levothyroxine was 25mcg, I was then tested regularly and gradually increased to my current dose of 100mcg which has stayed the same for about 5 years now. I get tested annually to check that’s still the correct dose. I lost the best part of 3 stone in weight, have loads more energy, no problems in getting up and getting going in the mornings, and now have a DS who is 5.

Hope you will feel better on the meds.

I went to the GP thinking I was diabetic as I was thirsty all the time, as well as tired. I came back diagnosed with underactive thyroid and pernicious anaemia. That was over 10 years ago and I take 100mcg thyroxine a day and have B12 injections every 3 months. My tiredness improved massively and the thirst went, sadly it’s never helped me on the weight loss front. Even medicated it’s a slow slog for me to lose weight!

Good idea to get your actual test results, if everything goes well you can disregard them but if you have lingering symptoms you can keep an eye on it.
When diagnosed my tsh was in the 30s and I think I was started on 50mcg which was bumped up over time to 150.
Thyroxine improved my symptoms by about 20-30% immediately (I wasn’t freezing cold all the time anymore) but increasing it didn’t really shift anything and even when my results looked ideal I still was left with fluid retention, constipation, thinned hair and low energy and mood. Eventually the endocrinologist added liothyronine which has made a huge difference.
Hope you feel better soon!

Thanks so much for sharing everyone, these are all really positive stories. As I went in for an unrelated reason, I hadn’t even been thinking about other symptoms. Like tiredness, I’m literally always tired. It’s a running joke at home that I’ve never seen the end of a TV show or movie, I come home in the evening, make dinner, do my jobs, sit on the sofa and I am out for the count within 20mins. Can’t sit down or I’ll fall asleep and then I’m in bed, happily, by 9/9.30 most nights. Can fall asleep anywhere, anytime! Always just put it down to full time demanding job, being a single parent, and life! If I got a bit more energy I’d be so delighted!

Also always thirsty, 3L of water a day. Bouts of itchy skin. Diagnosed with depression and anxiety in the past, medicated for both. Weight gain in recent years.

@PleasenotequilaUnfortunately don’t have the NHS app (it sounds great) as not UK based. I actually called my clinic back this morning, followed the prompt for ‘Blood Test Results’ on the phone, got through to an automated message telling me call between 3pm and 5pm Tuesday to Thursday. Fine. Call back at 3, and she tells me my bloods were ‘fine’ other than thyroid, and she can’t give me any further detail on the phone. I’d have to book a consultation 🙄 Told her I didn’t need a consultation, just wanted to levels relating to the thyroid. Refused. I’d have to see the doctor. I told her if she didn’t email my full results, I’d submit a Subject Access Request under GDPR legislation which would take her much more time. Still waiting for the results to be emailed. Bizarre and broken health system 😫

Oh, and my hands and feet are always freezing! 🥶

Yes I used to get so cold it made me feel sick.

I’ve had autoimmune hypothyroidism for about 30 yrs , currently on 125mcg levo per day , i have numerous autoimmune diseases and this is my least concerning one , i just have the levels checked yearly . I started originally on 50mcg and it’s gone up and down over the years . With hypothyroidism you get a medical exemption for prescription costs so get your GP to fill out the forms if you haven’t already .

I started on the same dose this autumn after GP referenced previous bloods with one following a routine blood test and found I'd had subclinically underactive thyroid for over a decade.
I feel fine on the levothyroxine and my hair is not breaking off (ditto nails) anymore. It's just another bit of routine I keep up with now, and a positive side-effect is that I take it in the morning, and as I can't eat for 30 mins afterwards, I skip breakfast so get a 'free' stretch of intermittent fasting, as don't get the chance to eat until midday once at work.

Hi, I got diagnosed with Hashimoto’s disease (autoimmune under active thyroid) when I was 17. I’m 31 now and mine is a bugger to control and I currently take 250mcg of Levothyroxine. I can’t recall many side effects to the meds just palpitations when I increase my dose briefly but I’m on a hefty dose (have been on higher) and my GP said he’d probably be completely toxic if he took it but it suits me fine. Honestly the exhaustion when your thyroid isn’t right can be absolutely debilitating but they should keep a good eye on it for a while.
Wishing you all the best and hope you get to the bottom of your issues xx

I’m hoping and praying my endocrinologist does this for me as my 250mcg Levo just doesn’t make me feel good anymore. My symptoms are more or less always there. Nothing can shift them anymore. I know it’s costly but they just keep coming back with changing my daily med routine which has proven for years it doesn’t make any difference. Have your levels been better since the liothyronine? Do you take it alongside Levo, any side effects? I’m really going to push for this. Xx

I was tired all the time, putting on weight, my hair and skin were very dry and my voice was hoarse - have been taking Thyroxine for more than 2 decades, no problems, very easy treatment tbh. Its just replacing something my body needs but just stopped making, so no side effects I'm aware of. The only problem was getting the right amount of medication in the beginning and i have regular blood tests to make sure it's ok ongoing.

I found out when I couldn’t get pregnant.
Ive been on thyroxine for over 20 years now, no problems, just a blood test every 6 months or so

I have never heard of liothionine before. Will have to look up what it does.

I have been in Levothyroxine for thirty years. Recently the doctor has told me to reduce my dose. Now I have a bloated stomach, itchy skin and am feeling the cold more. GP claims I am now in the normal range.

I have never really returned to normal. Hair is much thinner and I feel very tired along with all sorts of other things. Levothyroxine does help a lot though.

Cutting out gluten and dairy is often very helpful.

@YepItsAnotherOne different reason as I was hyperactive and took 100mcg levothyroxine after having 7/8ths of my thyroid removed in 1990. This was increased to 112.5mcg about 10 years ago. I like to maintain my TSH at about 1.5.

May I recommend the British Thyroid Foundation. Do have a look at their website.

I'm a little overweight but that's due to a penchant for good food and wine.

Thank you, I’ll definitely check out the website 🙏 And my weight gain could also just be my love of good food and wine 🤭

With regard to monitoring, the GP told me to book another round of bloods in 3 weeks and we would assess the medication level then. Another reason I didn’t want to book a consultation when I rang to get my results, or wait 3 weeks till I speak to the GP again 🙄

My key tip is in the week or so you start thyroxine you may find your emotions are all over the place. I can remember sitting at the kitchen table uncontrollably crying for no reason.
Also relieving stress seemed to help my levels recover a bit.

I started on 50mcg and was later increased to 100mcg. It took 2.5 years to get within the normal range (I think they now call it the reference range). It has not helped with most of my symptoms which the dr thought might be related to low thyroid. The only thing which has improved has been pins and needles in my feet. Seconding the British Thyroid Foundation, which has been helpful. In fact their most recent newsletter arrived yesterday and I found out something new, which is that one is not supposed to take multivitamins, particularly iron, as the same time as thyroxine - you should wait four hours.