What it is like not taking thyroid hormone medi... - Thyroid UK

Thyroid UK

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What it is like not taking thyroid hormone medicine, it applies to personal experience?

12 Replies

I would like to hear from people from their experience if they went without or symptoms leading up to being diagnosed and getting on thyroid medication.

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12 Replies
Lalatoot profile image
Lalatoot

It was great for about 10 weeks. Felt the best I had in a long time. But slowly the aches started and the face got puffy and fluid filled. I looked awful felt worse. Breathless, ached all over, could barely get out of bed, anxious and terrified, could not function on any level.

in reply toLalatoot

Lalatoot

Yes, and yes, you have listed the symptoms noticeable to me! I felt my functionality go down too!

BadHare profile image
BadHare

Utterly ****!

I had to ration NDT during the RLC supply shortage. I felt worse than before I started thyroid hormones despite topping up with T3.

in reply toBadHare

BadHare

I have to say it must be terrible with lapses with hormone replacement treatment. I know it's weird when you have one hormone level top off, and the others are not optimal.

greygoose profile image
greygoose

Symptoms are a very personal thing. There are over 300 symptoms of hypothyroidism, and you don't have to have them all to qualify. Everyone has their own personal selection.

I take T3 only, have done for years, because levo doesn't agree with me. In 2013, for reasons I won't go into, I stopped my T3 for 6 months. I lost all my hair, put on a load of weight and my skin turned to scales. I looked like a fat alligator! I had a ton of other stuff wrong with me, too, but not sure what was thyroid and what was the other illness I had at that time (non-thyroidal). But those three symptoms are my goto symptoms, so to speak, when my T3 is low, and were the main symptoms just before I got diagnosed. :)

in reply togreygoose

Greygoose

Thank you! I hear people have different symptoms, but I know some people its body temperature, memory, body weight, energy, and insomnia.

greygoose profile image
greygoose in reply to

Well, with over 300 symptoms to chose from, the combinations are endless! lol

If you have no residual symptoms, there's no point in holding experiments to see what happens.

BUT, if you do have unresolved symptoms, then you are likely to feel better by stopping levo, but only for a short period of time when your symptoms will gradually become a lot worse that they were beforehand.

in reply to

I wasn't advocating people to stop their hormone medication; I was wondering about what people experienced up to getting on thyroid treatment.

Purple45 profile image
Purple45

I wouldn't be able to function without thyroxine. I still struggle but without my heart rate even slows. I am exhausted, joints worse aniexty worse. Skin worse too.

TimD250172 profile image
TimD250172

I didn’t have any symptoms until I was diagnosed. Went into thyroxine and after 6 weeks or so became an anxious mess. I’ve got to say I haven’t felt as good as I did prior to diagnosis ever since.

Not feeling too bad at the moment as I’ve found a happy medium but I do miss having loads of energy and less anxiety.

in reply toTimD250172

I can relate it's about finding a happy medium, but I know it took me a while to find the right brand of thyroid hormone medicine and dosage.

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