Tablets making my sister worst

[Kmears97]

So I'm currently on the phone to my sister who have an overactive thyroid, however shes just gotten the latest blood results back to which the doctors have said that since she started taking the carbimazole 25mcg, her bloods have gotten worse, not better, they also said to her that her bloods were normal on the last test when she didnt take.tablets? How do I go about this? Do I need to get a second opinion on this? I'm not sure what to do or how to help her, we are very confused

[SeasideSusie Remembering]

Kmears97

I think for us to understand what's going on you need to give us some test results, with reference ranges, for TSH, FT4 and FT3.

Also, ask your sister were TSI and/or TRAb antibodies tested before starting Carbimazole, if so what were the results?

[Kmears97 in reply to SeasideSusie]

This is the problem I dont have them at present, she did ask for her results but they refused to give them to her, so I'm going to request them

I know her antibodies were tested before she started the carbimazole but unfortunately they didnt give her any results for it,

Which is why I'm going to.get the paper copy of all results for her because I dont understand how her bloods can just go from normal to not normal

[helvella Administrator Thyroid UK in reply to Kmears97]

You very likely will not be able to request the results for your sister. Under normal circumstances it would be a big NO.

But it is pretty obviously essential to get them to make sense of what is going on. We could speculate till the cows come home but that will only serve to confuse and mislead.

By the way "carbimazole 25mcg" doesn't makes much sense. First, carbimazole is dosed in multiple of 5 milligrams (mg). Second, it would be utterly perverse to choose a dose that requires two different tablets to be dispense. 5, 10, 20, 40 and 60 are common doses - and having been on a dose for a while, it might be cut down.

It is common to start carbimazole on a split dose - two, even three, times a day. This is so that it doesn't "run out" before the patient takes their next dose.

[Kmears97 in reply to helvella]

I meant to say 20mg it was a typo and normally when I request stuff for her they will give it to me provided she is there, and its jisr because she doesnt understand this stuff, she hasnt got a split dose it's one tablet every day

[helvella Administrator Thyroid UK in reply to Kmears97]

Ah! ok.

Adults

The initial dose is in the range 20 mg to 60 mg, taken as two to three divided doses. The dose should be titrated against thyroid function until the patient is euthyroid in order to reduce the risk of over-treatment and resultant hypothyroidism.

Subsequent therapy may then be administered in one of two ways.

Maintenance regimen: Final dosage is usually in the range 5 mg to 15 mg per day, which may be taken as a single daily dose. Therapy should be continued for at least six months and up to 18 months. Serial thyroid function monitoring is recommended, together with appropriate dosage modification in order to maintain a euthyroid state.

Blocking-replacement regimen: dosage is maintained at the initial level, i.e. 20 mg to 60 mg per day, and supplemental L-thyroxine, 50 mcg to 150 mcg per day, is administered concomitantly, in order to prevent hypothyroidism. Therapy should be continued for at least six months and up to 18 months. Where a single dosage of less than 20 mg is recommended, it is intended that carbimazole 5 mg tablets should be taken.

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[shaws Administrator]

You state "to which the doctors have said that since she started taking the carbimazole 25mcg, her bloods have gotten worse, not better". So what is the action they are going to take? The professionals are supposed to know what to do to bring her results to 'normal'. Something is not right.

Do you live close to your sister?

Maybe your sister will be able to phone the surgery and state that she wants to get a print-out of her latest results but that her sister will collect them.

Get a print-out of her latest blood test results, with the ranges and post them on a new post. Make sure the ranges are also quoted, i.e. these are in brackets after the results.

You know your sister far more than the GP and go by your instinct. Theoretically if we're on the right dose we begin to feel better slowly but that can take some time.

I am hypothyroid but members who've been hyPerthyroid will also respond when they read your post. I realise how worried you are as we do expect the 'professionals' to know how to bring about a resolution of symptoms..

I don;t understand how the doctors stated:-

"also said to her that her bloods were normal on the last test when she didnt take.tablets?"

Even if her bloods were normal on the last test, they don't seem to be at present.

p.s. I'm not medically qualified and have hypothyroidism.

[Kmears97 in reply to shaws]

Thank you I have hypothyroidism as well so I know about a fair bit about both. but shes been going through this for an entire year, they refuse to up her dosage after she started, and then refused to speak to her over the phone, my sister lives with me, unfortunately I couldnt make the appointment with her due to my daughter being in nursery today otherwise I wouldve went.

They are giving her another blood test and told her to wait three months to come back, but I dont think that's going to make anything better? I think she should be seen asap and try and see If theres something else going on, she did ask for a print out but they told her to ask for it the next time shes back there. Lord knows why, I mean it's something shes entitled to have, so I'm gonna request it from.the gp for her, shes really shy because she has aspergers and doesnt understand any of this it's more difficult for her to do this on her own which is why I have to do.it for her.

I said the exact same thing about her bloods, but the doctors here dont listen to you about anything you have to say unless you're shouting it at them.

Shes even lost weight, which wasnt suppose to happen and she has no appetite which I know is wrong bevaise shes suppose to have a big one

[shaws Administrator in reply to Kmears97]

How can people wait for three months for some resolution.

Make sure the blood draw is at the VERY earliest, fasting (she can drink water) and allow a gap of 24 hours between last dose of thyroid hormones and test and take afterwards.

Members who have hypER will respond when they read your post. I don't know how doctors can put their patients through such a trial who are very, very unwell.

[Kmears97 in reply to shaws]

I wont be waiting the three months, it's about time we got some answers, they took bloods again today despite the fact she hasnt fasted or anything, I dont know how they can either it's pretty obvious to me that shes unwell but they dont see it that way

[Lora7again]

I was told my bloods were normal when I was on PTU which is similar to carbimazole. Carbimazole gave me a rash so I was given PTU instead. Both of these drugs can give nasty side-effects so your sister really needs to see her Doctor and discuss the results with him. I wasn't properly monitored when I was on PTU and my TSH went up to 9 which made me feel really ill. Just to add some people do well on carbimazole and take it for years to treat their hyperthyroid.