Why have I only been given 12 days worth of Car... - Thyroid UK

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Why have I only been given 12 days worth of Carbmazole

Giri88888 profile image
16 Replies

Been on 20mg of Carbmazole since last Monday and just realised I only was prescribed 50 tabs and at 4 a day they won't last v long.

Do you think that is all I need or do I need a repeat prescription? What were you all prescribed?

Thanks

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Giri88888 profile image
Giri88888
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16 Replies
humanbean profile image
humanbean

Assuming you were prescribed them by a hospital consultant, these days hospitals only ever prescribe enough for 14 days (at the most) for out-patient use. The assumption is (rightly or wrongly) that if it is something you need regularly that your GP will take over prescribing.

I can't remember what it was now, but I've been prescribed 14 days worth of something from a hospital on more than one occasion, and was told that it was now a rule.

Giri88888 profile image
Giri88888 in reply to humanbean

Thanks so I dont need to ask for a repeat prescription if I feel ok? The consultant told doc to put me on 20 mg a day. Have hosp appt with endo next month

humanbean profile image
humanbean in reply to Giri88888

I think you should ask for a repeat prescription. The chances that only 12 days of Carbimazole will damp down an overactive thyroid are remote.

Fruitandnutcase profile image
Fruitandnutcase in reply to humanbean

I spent four weeks on 20mcg and it didn’t make any difference. My endo saw the results of my four week blood test and wrote to me telling me to get more carbimazole from my GP and raise my dose to 40mcg a day.

I think you need to get yourself more carbimazole, either speak to one of the GPS at your surgery or the practice nurse or pharmacist if they have one and ask what to do. You could always phone the hospital where you are being treated.

I can’t imagine the endo wanting a gap in your treatment.

Giri88888 profile image
Giri88888 in reply to Fruitandnutcase

Thanks what were your levels before you went on carbmazole? My tsh was 0.05 and t4 was 33

Fruitandnutcase profile image
Fruitandnutcase in reply to Giri88888

TSH - <0.03 (0.35-5.5) one endo said it would have been less than that, 0.03 is as low as the lab goes.

Free T4. - 28. 6. (10.0 - 19.8)

After four weeks on carbimazole my TSH was still the same and my Free T4. Was 15.6. (10.0 - 19.8) which was when I got the letter telling me to increase my dose of carbimazole. I took 40mcg a day for the next two months and by the time I actually saw an endo I was quite hypo. Think I should have been tested a bit earlier so that I didn’t become so hypo.

Hypo wasn’t nice, in a different way to being hyper but it was still pretty horrible.

T3 never tested by the NHS

Giri88888 profile image
Giri88888 in reply to Fruitandnutcase

Seems like most people go hyp after being on carbmazole :(

When would you say is best to be tested so I don't go under?

Fruitandnutcase profile image
Fruitandnutcase in reply to Giri88888

I don’t honestly know but nothing much had happened to my levels after four weeks and eight weeks after that I was hypo so I imagine if I’d been tested after four or five weeks on the larger dose it would have been better

Although, thinking about it maybe it doesn’t matter to the hospital whether or not you become hypo because they are going to give you levothyroxine to get you ‘normal’ anyway.

My hair started to come out in handfuls and my endo said it was because I went from being very hyper to being hypo in such a short time. The hair loss (and crumbling and very, very painful finger nails!) drove round the bend but it did all sort itself out once my thyroid stabilised.

Giri88888 profile image
Giri88888 in reply to Fruitandnutcase

Got s blood test in a few weeks and will buy one to test after 6 weeks.

How long did it take to go back to normal after being hypo? Did you put much weight on when you was on carbmazole?

Fruitandnutcase profile image
Fruitandnutcase in reply to Giri88888

Can’t remember exactly how long it took. I started block and replace at the very end of February and it was diagnosed probably the middle of July before my TSH went down to below 1 and I felt good.

Up until then I felt ok but then every time my body got used to the amount of levothyroxine I was taking I used to get what felt to me like hyper symptoms again, it wasn’t, it was just how I was when I needed an increase in my levo and I felt better once that happened. Once I got 9n to the correct (for me) balance of carbimazole and levo together I felt fine. Then in November - exactly a year after I was diagnosed I stopped everything. One day I was taking 40mcg carbimazole plus 75/100mcg levothyroxine, I saw my endo and next morning I took nothing, which felt a bit strange but I’ve been in remission ever since.

I didn’t put on weight as such, I put back on all the weight I had lost when I was hyper. I lost a lot of weight and I just went back to my pre graves weight, I had read that that would happen and I didn’t actually believe I would but I did. I didn’t put on ‘extra’ weight though, I fitted my pre graves clothes again.

Giri88888 profile image
Giri88888 in reply to Fruitandnutcase

What were your levels when you were hyper and how much Carbmazole was you on?

Fruitandnutcase profile image
Fruitandnutcase in reply to Giri88888

Hyper - see a few entries above. I was treated by block and replace so I always took 40mcg carbimazole and my endo increased the amount of levothyroxine I was taking after each visit. I started on 25mcg - possibly because I was in my mid sixties at the time - and I 8ncreased the levo until I was taking 75/100mcg on alternate days.

Once I reached a certain level I felt very good on block and replace.

I don't know much about titration treatment though - that’s where you only take carbimazole and the amount carb you take is gradually reduced, I’m not sure how much you would start on, how it is reduced or how long it takes to happen although the first endo I saw went through al the ways of treating Graves and said my hospital uses block and replace which is the ‘quick method’. He went 9n to say it took a year which I didn’t think was particularly fast.

Clutter profile image
Clutter in reply to Giri88888

Giri88888,

You need a repeat prescription. Your GP receptionist will tell you how to order repeats. Allow at least a week before your current prescription runs out.

MissZP profile image
MissZP

Hi Giri88888,

In newly diagnosed (July) and I was given two weeks worth of tablets and asked to return in two weeks for a blood test.

Dr issued a prescription for the same meds and again I was told return in two weeks for bloods. I'm now tested every month and I've got a repeat prescription, it's valid for two more repeats.

I think it's just to make sure we keep seeing our Dr and get monitored regularly, they're also probably still trying to get your dose right.

Out of interest, what were your levels? I was free T4 88 when diagnosed, which dropped to 35 after two weeks, it has stayed the same for the past couple of months but has now crept up to 38 so my meds have been increased from 20mg daily to 30mg.

Good luck with everything

Zoe

Giri88888 profile image
Giri88888 in reply to MissZP

Wish doc said I needed to take more.

My tsh was 0.05 and t4 33

MissZP profile image
MissZP in reply to Giri88888

Hi

What do you say that?

Zoe

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