Concerns about suggested treatment for Graves

[Kari55]

As some of you already know my husband has Graves’ disease and after few weeks of 40g of Carbimazole he developed neutropenia. He will now start PTU once his levels go up, however his endo is worried that this will cause neutropenia too and suggested the thyroid surgery. We are a bit shocked and feel that it is a drastic solution. We obviously need to wait and see how he tolerates PTU however we need to plan the next steps. If anyone has been in a similar situation or has any suggestions for this situation, I would be most grateful to hear it.

[WobblyX]

Similar situ, not neutropenia but my liver reacted badly to Carbimazole and I started to become jaundiced. The Carbimazole was stopped, it had worked and had lowered my levels but the endo was concerned that as I had Graves’ disease and if the levels rose again she would have nothing to treat me with. PTU can also cause liver problems. RAI was no longer an option as an initial reaction to it can be a raise in thyroxine which is initially treated by Carbimazole. The only option offered me was thyroidectomy and I felt it was the safest option for me. They arranged to do it within a few weeks because of their concern of my levels rising.

We were really shocked the day the endo told us the options....I still remember that day....

It was hard feeling your options are limited. The op itself was fine, it takes a while to get levels sorted. My op was 2016 and I’m on Levo only but I do take a proactive approach to supplements. There is lots of supportive and excellent advice available on here. Generally I sleep well and keep going all day, evenings I prefer to do little and can be reluctant to go out. Complex thinking takes me longer than before but I don’t feel poorly as such so have a lot to be thankful for......everyone is different so it will be helpful to read others stories. Best wishes for whatever decisions you need to make...it is good to investigate and prepare yourselves

[Kari55 in reply to WobblyX]

Thank you for replying WobblyX. My husband is only 38 and having all these problems is quite overwhelming. His ophthalmologist advised him against RAI as it would have worsened his TED. We need to do some research about the surgery option but I’m hoping he will be ok on PTU.

[Espisnowwoman]

I also have hyper/graves. Doctors always wanna take out thyroid. Not fun being sick. I refused them to do ria on me.

[Kari55 in reply to Espisnowwoman]

Did you manage to get your levels under control?

[Espisnowwoman]

Yes but it took way over a year to do it and many trips to the lab.

[Kari55 in reply to Espisnowwoman]

If my husband could tolerate PTU then we would definitely refuse the surgery. His white cells have gone up so he can start medication tomorrow.

[Espisnowwoman]

I was never offered ptu. I take methimazole. I wish well and may god u and ur husband. I was close to death twice with my graves because no one detected it i was sick for 17 years.

[Kari55 in reply to Espisnowwoman]

Sorry to hear that. My husband was also extremely ill and at the A&E they even thought he had a heart attack. Graves is a horrible condition and people who don’t have thyroid problems always dismiss it saying it’s “just thyroid”.

[Espisnowwoman]

Because i have hyper/graves i now also have high blood pressure. I take 300 mgs of meds a day for that. Doctors dont know everything. They have done alot of studies on graves here in the u.s.a.so they r finding out more about it. My endo told me that thyroid is the engine to ur body.

[JennaShi]

I was just going to ask if mayne this is a reaction the medicine? I used to take Methimizole. I hope the PTU works.

[Kari55 in reply to JennaShi]

He had a cold last week so I wonder if this is more to do with that.He was taking Carbimazole which is UK equivalent to the US methimizole. I hope he doesn’t go into neutropenia with PTU.

[JennaShi]

Thats makes sense, out of the times I’ve not felt well and gotten my blood drawn, my white blood cells have been low too.

[irish31]

Hello Kari

I know it was a long time now you posted this but I have graves and am 32 years old . I have been on Carbimizole close to 18 months now and trialing off it to see if my body does what it needs to recover. My eyes were mild case of ted but I worry it will get worse off the block and replace. I have met with the surgeon to discuss the op but like you it seems extreme. I was hoping you could tell me how your husband got on ? As I have the tingling pins and needles and tight chest pain all the time on this trial of 6 weeks off meds really wish the medical field could do more for us patients !

[Kari55 in reply to irish31]

Hi irish31, my husband is doing ok on a very low dose of PTU at the moment and although the doctors are pushing him into thyroidectomy, he hasn’t decided to go for it at the moment.

I hope you’re weaning off meds goes well 🤞🏻