Thyroid UK
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Graves Disease

Hi there I was just wondering if I could possibly get some advice from someone please as to what to do. I was diagnosed with an overactive thyroid and Graves in Nov 2013 and went on Carbimazole. I was on this for a while and then got pregnant. During my pregnancy my thyroid problem basically went away levels all normal then 6 months after having little girl it came back with a vengeance, which took me to Sept 2015. I went back on Carbimazole and basically have been on it for nearly 2 years with levels that keep going up and down. This last year my thyroid seemed to be getting better and was under an Endocrinolgist who basically put me on reducing dose according to levels. Each time I reduced my dose my levels were getting more stable and was responding to the meds. My consultant said come this Sept 2017 to stop my meds all together and then she discharged me. I had been getting NHS blood tests but have also the last few months been paying for private finger prick tests with medichecks.

My bloods on 27th Sept on a dose of 1.25mg every 2 days were-

TSH 1.14 (0.27-4.20)

Free Thyroxine 17.2 (12.00-22.00)

Free T3 4.6 (3.10-6.80).

So I basically stopped all meds. I haven't got any symptoms of being over active but as the hospital discharged me felt I should do a private test just to see how my levels were doing.

These are my results on no medications for the last 11 weeks-

TSH 0.625 (0.27-4.20)

Free Thyroxine 23.5 (12.00-22.00)

Free T3 7.11 (3.10-6.80).

As you can see my t4/t3 are slightly over range and am now terrified I'm going to go overactive again. I no this sounds silly but I'm not sure what to do should I contact hospital again. I do have some Carbimazole left over and am not sure whether to restart or at what dose. I'm really upset as I thought I was doing so well and it has basically been 4 years of hell with the ups and down of my thyroid which has been a big struggle with having a baby who is now a very active toddler. Any advice would be greatly appreciated please.

Many thanks for taking the time to read.

Dana

2 Replies
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Hi

Sadly It looks like you may be heading back to overactivity. With your latest T4 and T3 levels only being slightly over range you probably don’t feel hyper. But, left unmedicated, the levels will probably continue to rise and over time you will feel the familiar Graves symptoms coming on again.

Did you feel well while taking the small dose of 1.25mcg Carbimazole every two days? Your Endo has done the usual trick of getting you euthyroid and then discharging you from his or her care in the hope you will be in remission but they never ever give a thought to the position you are then in if remission doesn’t happen and you have to work out the next steps for yourself.

Going back on Carbimazole will undoubtably help but you will run out of meds at some point and being hyper - which is deemed more dangerous than hypo if not controlled, you really need someone to plan your care and supply more Carbimazole when needed. Your GP should have notes from your Endo and should be aware of your situation so this could be your first port of call.

I don’t see the harm in contacting your Endo to tell him/ her what has happened and ask for advice / help. Be prepared though to be invited to consider RAI .

You certainly don’t want your Graves symptoms to return so contacting one of your medical team to discuss the way forward is the way to go in my opinion.

Good luck.

Reply

Hi MrsGraves,

Thank you very much for your reply I really appreciate your help and advice. Yes I did feel well on the 1.25mg every couple of days and felt I should of stayed on it but felt pressurised by Dr to stop come Sept. I am going to contact GP today and hopefully will get an appointment ASAP, just hope I don't have to wait for an appointment my Drs are a nightmare for getting an appointment.

Many thanks once again.

Dana

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