Too long to wait

[Cal123]

So I was diagnosed with GD in Feb, saw an endo on 2nd March and started on 30mg of Carb and 40mg x 3 of propanolol (which I've now taken down to 2). Feeling well at the moment, apart from aches in my torso and upper legs after walking. (I feel like I'm walking underwater!) My GP said he would test this separately once my antibodies are down.

Saw my GP about a week ago and asked him to do another blood test but he wants the endo to take the lead so I'm not gonna get my bloods done until end of April. I'm also going to demand all the vitamin checks.

Now had a letter from the hospital with a date for my 2nd appt, with a different endo ( just checked her out and shes a diabetes specialist - surprise!) and the appt is October!!!! Grrrr. Is this usual?

My concern is that my GP on his own may not titrate and I know I shouldn't be on 30mg for too long.

[PinkNinja]

I think it would be wise to talk to the GP as soon as your test results come in and explain that your endo appointment isn't until October. Hopefully he will use his knowledge to alter your dose sensibly. If he isn't confident to do this then he needs to help you get an earlier appointment. You can't wait for six months with something like this unless the endo is expecting your GP to manage your condition for the most part.

As long as your GP is monitoring you closely, there shouldn't be a problem with him adjusting your dose as necessary without input from an endo.

Clearly reducing the waiting times for hospital appointments isn't working!

I hope you get the support you need so you can regain your health quickly.

Carolyn x

[Cal123 in reply to PinkNinja]

I think my GP is expecting the endo to lead. I have told him of my concerns as the first endo told me that my thyroid issue is not linked to my gut or immune system but we all know different. I have been doing lots of research, its just so frustrating.

I didn't know my GP could push for an earlier appointment.

Do you know if I can change hospitals? I only went to this one as it was the earliest first appointment I could get on the booking system.

thank you for your help Carolyn

[PinkNinja in reply to Cal123]

I don't know if your doctor can push for an earlier appointment but they may be able to if they don't feel that your condition can be managed in primary care. It is certainly worth talking to him. If he can't then he will need to manage your condition himself until an endo can see you. Those are his options because he can't just not treat you because a specialist isn't available. That would be negligent. If he doesn't want to do this without an endo, he will need to make arrangements so that he can at least get advice from one based on your blood test results and your clinical presentation. 6 months is too long to wait!

[Cal123 in reply to PinkNinja]

I know, I'm writing a list of questions and concerns and will leave it with him if I have to, as I only get 10 min appointments.

thanks again

[Clutter]

Cal123, your GP should monitor bloods every 4-6 weeks to check your levels and adjust your dose if it looks like you are going hyper or hypo. If GP isn't confident how to titrate s/he should telephone or email your endo for advice.

[Cal123]

Thanks Clutter. I did tell my GP that and he asked 'where did you get that info from?' I told him it is standard practice when starting out on Carbimazole but I didn't have anything to back it up. I made it clear I did not want to go hypo.

[Fruitandnutcase]

You will need to be careful. I was first diagnosed with GD in November, started on 20mcg Carbimazole - no beta blockers though, I'm asthmatic. I was tested four weeks later and obviously not enough had improved because I got a letter from my endo who I had not yet seen, telling me to double the dose and get more carb from my GP.

I did that but wasn't retested or seen by anyone until the end of March by which time I had been in 40mcg a day from the beginning of January to the end of March. By then my TSH had gone from 0.03 was told later that it was lower than that but that was the lowest they recorded to 7.6. and I didn't feel at all good! So it is very important to be checked out regularly. Back then I was far too trusting.

I think you can change hospitals, not sure how you do it - tell your doctor you don't want to be seen by someone who specialises in diabetes perhaps? I know of at least one member on here who changed hospitals though.

Contact Louise at TUK for her list of thyroid patient friendly doctors and endo's or you could put out a post asking about good endos in your area. You will have to ask for the replies to come as PMs though.

I wouldn't have wanted to wait all that time when I was first diagnosed I thought three months was a long time although I found out my waiting time was about average

[Cal123]

Thank you Fruitandnutcase. May be I'm just panicking as my first endo told me the next appointment would be in 12 weeks not 6 months, but I am feeling quite well at the moment. I'm going to have another blood test at the end of April which will be 2 months since starting the Carbimazole. When I see my GP I will demand he do them every 4-6 weeks again, and I'll have to find info on titration so I can go in armed!