Thyroid - share your experiences

[ditavonteesed]

Ok this is a bit random but I have felt crap for years, so tired, needed a couple of hours nap a day as well as being tucked up in bed by 9.30 every night. I'm overweight and just generally felt slow and crappy, I have been forgetting stuff.

I have been to the drs so many times over the years and there has always been a reason, you have small kids, you have an sn kid, your a student nurse, your a nurse, always a reason to feel like I did. Anyway recently I went to the drs and they did bloods, I had 2 months of iron, vitamin d and had repeat thyroid bloods after 6 weeks. They only did the levels first so couldn't tell for definite as needed t4 as well. My Tsh was only 6 first time and 6.3 second and my t4 level was right at the bottom of the range. I did have a test many years ago and my pervious Tsh was 2 so while not massively out of range very different for me,
They started me on thyroxine 6 weeks ago, only 50mg, I am like a new person. I no longer need to nap and can stay up till 11 at night, weight is dropping off me despite changing nothing and I am motivated, I am excited about things and have the energy to make plans, I see friends more because I no longer put everybody off in case they interrupt my nap time. My period is not as heavy and awful as it has been for years. I feel like I can cope with everything and still have the energy left to paint the house. My hair seems to be thickening out where I had bald patches before.
My numbers weren't even that bad how is it possible that all this is from 50mg of thyroxine. I have a review in another 6 weeks and I am desperately hoping they don't take the thyroxine away, can anyone who has been through this assure me they won't.

I also had a scan which the results suggest my thyroid has been not right for a long time. I would recommend anyone who has these symptoms to get it checked out. Have other people had similar life changing reactions to thyroxine?

I have no thyroid at all and only take 125mcg a day. However like you I did have problems for years before they eventually took it out. Tired, sluggish, dry skin, miscarriages, forgetful the list went on. Once they took it out and put me on thyroxine life drastically improved in lots of ways.

If thay have done a scan then I would suggest you push for an appointment with an endocrinology consultant who can properly assess your results and explain what they mean by 'not right'.

6 weeks is just a monitoring test. They may try cutting it to 25mcg if the numbers are way out but might decide to wait until they have a few results. AND always ask for your actual numbers when you get results.

It's unlikely, given the effect, that the medication would be stopped. I've been on 20mcg forever. Sometimes I feel a positive effect. Sometimes not.

Oops 200mcg

Wow, that's impressive. My TSH is currently 6.2. I was started on 25mcg of thyroxine 2 weeks ago, and it hasn't made a difference at all (not that I expected it to). I really hope it gets increased and I start to feel better soon. Exhausted all the time, weight piling on, brain fog, sore muscles and loads of other symptoms.

First dose of 75mcgs of thyroxine and the lump I had had in my neck for a couple of years, which kept flaring up accompanied by flu-like symptoms, disappeared overnight and has never returned.

Four weeks later I bought a bike. I also realised I hadn't had a panic attack in that time.

That was six years ago.

Incidentally, all you people being started on 25mcgs , the NICE Clinical Knowledge Summary says you should only start on that dose if you are over 50 or have cardiac disease or 'severe hypothyroidism' (whatever that means). Anyone else should start on a dose of between 50 and 100 mcgs.

Thanks, I went into the go armed with nice guidelines but I didn't actually need them in the end, I have kept a note if all the numbers and will continue to do so. I am so happy right now, I actually think I had general glumpiness in mood as well as a symptom but it was so gradual that I didn't even realise.

Fluffy sheep, hopefully if they increase you will feel better, when you got your repeat blood? I also read quite a bit about if thyroxine doesn't work you may need t3 r placement as well so see if they will test t3 levels as well.

That's fantastic that it's made such a difference. I hope that you continue to feel well and energetic.

One of my adult DC is very low energy and gets stressed etc and I've wondered if she should have blood test for various things. She isn't at all overweight but she controls her food intake a lot.
I think I'll suggest she goes to the GP again.

This is a much needed read for me - thank you.
Had a blood test before I went away for a week and got my results at the surgery today. My TSH was 44.6 and the nurse practitioner said it will probably take some tweaking to get to the right dose for me. I'd last had my TSH tested in 2017 when it was 2, so I am still a bit staggered at just how wonky it has gone. I didn't even ask about T3 or T4, not sure they have been checked.

I have an 8-10cm slow growing benign thyroid tumour which has been under consultant observation for 5 years now. It's grown from 5 to 8cm and is now very visible on my neck. The consultant wants to remove it, but I've heard horror stories. I'm naturally slim, but have horrendous anxiety. Will a complete thyroid removal mean I'll put on weight? Will I feel awful whilst they're working my thyroxine medication dose out? I'm still BF too; this is why I've managed to avoid having it removed.

I had my thyroid removed in April as it was cancerous and have been on thyroxine since then. I haven’t noticed any difference with my energy levels and back to running 5 miles 3 times a week. I have lost weight since my operation, I think this is down to giving up alcohol and slight loss of appetite.
I have found the last 5 months difficult and stressful, but I was glad they took the thyroid and tumors out. They also removed lymph nodes from my neck. The recovery wasn’t too bad, couldn’t drive for a 10 days and was careful not to lift anything heavy.
Remember people only tell you the bad stories!

MrsPworkingmummy, I had a sub total thyroidectomy in the early 90s. Due to severe graves rather than a growth or tumour. I took 100mcg of thyroxine thereafter for about 25 years increasing to112.5mcg a few years ago. I have never felt awful and the only thing that has ever made me put on weight is my love of good food and wine. I have a barely noticeable scar.

Had my thyroid removed when I was 23, due to graves diesese. Been on 150mcg ever since. Only negative I've been left with a horrendous scar that never healed.
I've never put on any weight, I've always been naturally slim.

Thanks ladies. That's reassuring. I'm not too fussed about a scar. The growth is visible anyway so it'd be swapping one for the other. It's more the debilitating loss of energy I'd heard about. I'm a teacher so my consultant is also open about the effed this could have on my voice. He's said he'd sign me off work for 6 weeks minimum too. X

I believe their is a tiny risk re the voice. I had no issues at all. I was signed off for 6 weeks but felt fine after 3 so got sugned back on. I think operations can be underestimated though and I got two gastro bugs in the next three months and wondered if I should have taken things easier.

Could you have a chat to the surgeon and try to arrange it three/four weeks before Christmas?

Thanks. I'm not mentally prepared for before Christmas. I'm a softie and am petrified of going under the knife!! I have an 18 month old and a 7 year old and am terrified some bad will happen when I'm on the operating table. How long did the op take? How long were you in hospital for? I'd take the 6 weeks off, even if I felt fine. My job is tough and physically/emotionally draining so I'd want to be fully fit and if I've got the chance of time off, I'll take it.

Well I'm going back more than 25 years. I believe the op took about an hour; then an hour in recovery. I remember having soup and soft bread for supper. I had it done at King Edward VII in London on the sunday eve, had the op Monday morning, staples out Friday morning and went home at lunchtime. Could easily have gone home weds eve - would have avoided a string of visitors on the Thursday.

Please don't assume other people don't do physically and emotionally demanding jobs or might not work as hard as a teacher. You lost me there I'm afraid.

@OhTheRoses I don't assume that at all! You've completely misinterpreted my post. I was merely stating, in my particular post, in my particular school, I would definitely be taking the whole 6 weeks off, even if I felt well after 3. I'm sure there are many much tougher jobs than teaching. Can't understand how you've taken that completely out of the context of my personal situation.

I was in hospital for 2 nights but could have come home after 1. I was admitted on the day of the operation. My operation last 61/2 hours, but my cancer had spread to the lymph nodes, which were also removed. I didn’t find the recovery that bad, but did go to bed at 9.00 pm