Scared to take thyroxine

[inthewoods4]

Hi, I’ve been struggling with what I thought were mental health problems for 18 months, but have just found out my thyroid is under active. It’s classed as subclinical with a TSH of 4.5 and the doctor has given me 12.5mcg to start with.
Stupidly I’ve gone down too many rabbit holes and been told it could make me feel worse, and as anxiety has been my main problem, this has really scared me! Can anyone reassure me?

Some of these seem really high to me and I dont have a thyroid at all. They’re even looking at lowering mine from 125.

That's what I took when very pregnant!

I've taken it for over a decade, the only mental health effects I had were from being underactive and not taking it or not having a high enough dose.

Mine ranges from sometimes 75 then 100 then 125 and then down again and so on

I’m on 125 , never had an issue with it , it’s best to stay off Dr Google , especially if you have health anxiety anyway .

I'm on 275 and it's a wonder drug. I don't feel alive in the mornings until I've taken it.

Having a high TSH can be debilitating, you'll be amazed at how much better you feel soon.

I’m on 100mcg 5 days and none at all on the weekends. I had half my thyroid removed as it was compressing my trachea! Bizarrely my TFTs were all perfect before I had this surgery! My daughter had a TT at 21 for overactive thyroid and is on 100mcg 5 days a week and 125mcg on weekend days. My dad was also on it but 200mcg a day as he had no pituitary gland. So basically we are all being kept alive by this drug! Also as it’s micrograms it’s a tiny dose. One paracetamol is 500 grams for comparison!

This. I have also been on it for approx 30 years, I feel fine and there were no side effects.

I’m on 175. I think I’m a bit weird and insensitive to my body because I had a blood test for something else many years ago and it turned out I was producing basically no thyroxine so needed to start taking it. I hadn’t noticed. And I didn’t notice any difference in how I felt at different doses. They just do blood tests every now and again and tell me what I should be on and I take it. Never felt any different. Weird really.

When i got diagnosed it was through random blood tests i think i was anemic at the time and they did extra tests i didn't think i was unwell at the time but I think id been unwell for so long it seemed normal to me it was only after my levels where normal and my memory returned i realised the difference i cant remember the exact numbers but i remember my dr not believing the results as they was so high he retested . I'm more aware now when my something is wrong and can usually tell when my thyroid is off

I'm on 400mg. I've been on it for 21 yrs. Never had any unusual or concerning side effects. I have regular blood tests, and have been absolutely fine.

You'll be ok on that dosage OP, it's an extremely low dose. I was started on 25mg years ago, and my friend was too recently. She's been fine too.

Crikey, 400 is a hight dose! Is that right or a typo? The British Thyroid Association says the maximum is 300mcg daily.

Most people sit at around the 100 to 150mcg mark.

I started on 25mg last year and am now up to 50mg. I haven’t had any side effects. That said, I’m not really sure how much better I feel (my memory and mental acuity had really declined). Any effects weren’t instantaneous or very obvious but I think there’s been a slow improvement.

I can completely understand your concerns, but I’ve been on 150 for over 10yrs now & it’s only ever made me feel better than when I was not on it.

Unfortunately no it's not a typo. I have been on this dosage for over a year. Sadly the blood tests are tested either side 6 weekly. They've tried to decrease it, but when I have the 6 weekly test, my levels are very low. So it's increased. Tested 6 weeks after my levels are great. So I have just accepted that's as it is. There's nothing set in stone. If we were all the same, medical science wouldn't improve. I am fine on 400mg. I'm monitored and reviewed regularly. It is what it is. I've even seen an endocrinologist, and they said it's all doing great, so they're happy with that.

I’m on 300 mcg was on a lot more when pregnant. I have no thyroid, was born without so what I need compared to someone else will be different I’ve been referred to endocrinologist though as I’ve been so exhausted despite this dose. Ive been on it since I was 6 weeks old

Thank you everyone. I’m feeling pretty overwhelmed today, I’m scared that I won’t feel better - I think I’ve been trying to work out what’s wrong for so long an actual diagnosis doesn’t feel real- if that makes sense?!

No thyroid as had to have the treatment to remove and been on 125 for almost 8 years no problems

Oh and my mum she's been on 150 for almost 22 years no problems but it does take a while to settle once you start meds

12.5 is the smallest possible amount. I’m on 150! You won’t even notice it, I’m actually surprised you’ve been put on such a low dose.

I'm on 25mcg, the highest I was ever on was 75 mcg when my TSH was around 42.
I've never felt any effects

I think he was worried about side effects because anxiety/nervousness is one of my main symptom and said he didn’t want to make those worse

That’s interesting op - my TSH was 0.94 and only recently has it gone up to 1.28. I’ve been told that’s in the normal range? But yours is 4.5? Does it differ from trust to trust? Maybe I need to discuss further? (Sorry to hijack!)

Ignore me, I’ve just realised I’m reading results wrong!

@inthewoods4 its scary starting any new medication no matter what it’s for. I’ve had an under active thyroid myself since I was 18 and also work in a pharmacy as a technician.

Your dose is a fairly low dose to get you started. This medication does take a little time to work in to your system so you won’t be hit with alot of side effects over night. Start your meditation as your doctor prescribed as you don’t know how much of your anxiety can be attributed to your low thyroid. If you’re feeling nervous about starting your thyroxine, your pharmacist can also answer any questions you have to make you feel more at ease. Your dose may be tweaked if needed depending on your bloods when they repeat them to see how the 12.5mg works for you. Thyroid levels can fluctuate, I’m on my 3rd increase in 6 months! Take it first thing in a morning as well, at least 30minutes before food to make sure you get the best absorption. I hope your minds been put at ease! If you’ve got any questions or doubts your pharmacist or gp can help.

It takes between 6 days and 6 weeks to build up in your body. It will make you feel so much better. Even babies take levothyroxine if they have hypothyroidism.