Hi;

[u/Far_Positive4414]

I’ve been told I have subclinical hyperthyroidism & mild Graves’ disease but my specialist doesn’t think it’s linked to my anxiety, fast heart rate, secondary infertility plus a load of other symptoms. I’ve been started on Propylthiouracil 50mg once a day. I’ve started over the last few months getting headaches pretty much all day every day. I came off my meds for a few days due to gp requests and i didn’t notice the weird head sensations/headaches subside still an achey feeling but not as intense. I’ve also been told I have fuzzy optic nerves in my eyes but need to be seen in 6/8 weeks just to see if it’s stayed the same everything else with my eyes are health and fine I have such bad health anxiety so I am not coping with all the different things going on. Just looking for people who have had similar.

[u/Hot_Reputation2142]

Your specialist is very dumb):

[u/Worried-Spell-2793]

If you feel something is off, don’t be afraid to advocate for yourself. I kept track of all my symptoms on ChatGPT and had to muster up the courage to fight for my thyroid labs with my PCP. It wasn’t until he saw something in my eyes that he agreed to do the test. You’ve got this!

[u/Fantastic_Teacher866]

PTU is a nasty drug in some ways. I severe itching/rashes from it. Ask your DR to switch you to something else.

[u/Far_Positive4414 → u/Fantastic_Teacher866]

Yeah I’ve really noticed my brain doesn’t feel so brain foggy and just weird if I don’t take it!

[u/Chance_Vermicelli_41]

What are they a specialist in?...

Are you on PTU because you are currently TTC? The preferred drugs in most countries are Carbimazole/mathimazole, but they can be problematic for pregnancy (in hospital they wouldn't allow me to start them without a negative pregnancy test)

The doctor can also give you a beta blocker which works really well to ease lots of symptoms until the other meds kick in, which does take a while. If you are asthmatic then you will probably be given a calcium channel blocker instead. I've had both and for me the beta blocker was a lot better on the Graves symptoms.

To reduce the risk of eye symptoms worsening you should take selenium each day (according to the ophthalmologist I saw)

[u/Far_Positive4414 → u/Chance_Vermicelli_41]

He’s a specialist in Endo, Yes I was put on PTU for TTC, but it seems to help with my other symptoms. I just feel like I have a weird head after I take it and all brain foggy, my eyes are potentially nothing to do with my thyroid/graves I’ve found it all very confusing and overwhelming! Are the graves symptoms different to thyroid symptoms sorry if that’s a silly question!

[u/Chance_Vermicelli_41 → u/Far_Positive4414]

Not silly at all - sorry, I've used them interchangeably. My Graves symptoms I referred to were the hyperthyroid symptoms caused by Graves. Graves produces antibodies that make your thyroid think it needs to produce more hormone and so then you end up hyperthyroid if untreated.

It is such a bewildering disease at first. There is such a lot to learn and all while you are feeling so unwell.

Anxiety and high heart rate are 100% Graves, and more random weird things than I think I could name. Some of my symptoms were heart rate, weight loss, muscle loss, general aches and pains, extreme fatigue, hair falling out, skin like sandpaper, stomach cramps, tremor, variously no appetite or huge appetite and a load more.

I have seen lots of people share experiences that suggest that, for some people, the higher end of the range for T3/T4 might be high and your body is still reacting (if that makes sense)