Hyperthyroidism first appointment

[SamB22]

Hi

This is a follow on from my previous post. First appointment with consultant and as my liver enzymes were raised, they are taking me off carb, done blood tests and said other options radio active iodine or surgery if liver still raised. Wouldn’t entertain the idea of the other medication when I mentioned it as it effects liver. So now I am a wreck so worried about the other options he was pushing to RAI. The registrar before I saw the main consultant said she was raising my carb and the liver weed expected at first, then went ti get him who has said the opposite and ordered an urgent ultrasound of my liver. I am so sad and in shock

[PurpleNails Administrator]

Sorry to hear your liver enzymes are raised. From what I’ve read it’s exceptionally rare to develop liver issues from carbimazole & it is true that the alternative propylthiouracil (PTU) is considered more risky for inducing liver issues which is why they are likely saying they wouldn’t prescribe it.

Chemically they work differently so it isn’t certain that you would continue to react the same but its not a risk doctors would agree to take.

Hopefully your scan will be soon and liver enzymes return to normal quickly. How high are they?

What are the thyroid results? if the carbimazole was to be increased are the FT4 & FT3 still raised?

Usually thyroid levels need to be under control to proceed with RAI. How will that be managed?

Do you have some time to decide which option you decide on?

[SamB22 in reply to PurpleNails]

Hi my levels are t4 in range (under24) - 22, t3 slightly above range 7.5 should be under 6.5 and Tsh same at 0.05. The main consultant said they would drop carb to 10 mg if liver had come down a bit or it was not carb. They are doing tests to see why liver high- bone was one of them, t3/4 done again. It felt like a quick appointment with the registrar saying different to the main consultant - main consultant lowering registrar would have been increasing dose - registrar also didn’t see a problem with the liver enzymes - just felt rushed main consultant standing and not really listening to me I just felt rushed and never asked questions I had prepared. Do you think I am able to hold out for the carb if liver raised as I would be taking a lower dose of 10 instead of 20 mg and that may help with the liver. How much say do we have in Our treatment?

[PurpleNails Administrator in reply to SamB22]

Depending on how high your levels were originally & what affect the carbimazole dose has had on FT4 & FT3 the carbimazole would normally be adjusted with this in mind.

Often doctors look just at TSH which is wrong. Carbimazole alters production of new hormone not existing. If current dose reduced to almost into range then its likely sufficient to keep dose same and only reduce it once levels in range.

So the liver issue may not be due to carbimazole? Shouldn’t this be investigated first?

Your not alone with feeling rushed & without any opportunity to raise any questions. This has happened to many of us. I was once informed I would be undergoing RAI (by a quick telephone call). I said I have some questions and was interrupted mid sentence and told all the information will be in the letter. I was sent a consent form and a patient information leaflet none of my questions were addressed.

Ultimately you are in control of your treatment, you can’t be forced to take any medication and Doctors can’t force you to undergo surgery or RAI (or any medication procedure) as they would need your signed consent.

If doctors have deemed a medication is potentially doing harm to you then they can not prescribe it for you, but has it been confirmed the carbimazole is causing the issue? Until that’s established doctors will always cease the medication.

[Valarian in reply to SamB22]

In the end, the consultant will have more experience than the registrar, but it would still be good to know why they disagreed.

The type of liver problem caused by carbimazole is different from that caused by PTU. Obviously they need to be sure that it was in fact caused by the carbimazole, so once they’ve done the analysis, you could ask again about switching. endocrine-abstracts.org/ea/.... The article says the problem is dose-independent, so if they decide the problem was caused by carbimazole, simply reducing the dose is unlikely to be the answer.

[pennyannie]

Hey there ;

So sorry to read about this last appointment and that the registrar had conflicting views to that of the consultant :

This was your first appointment -wasn't it ?

What happened to the 15-18 month window for treatment with AT drugs ?

However - at my first appointment i was told I was to have RAI thyroid ablation the following year and knew no different in 2004 and went along with everything I was told.

There is no harm in having the liver scan and your liver enzymes may drop back down into the normal range, and you are coming back down into range and the dose of AT will be reduced reducing the risk of liver damage which can be managed in the short term.

You must be feeling very confused by this appointment as all this is very new to you :

Can you talk this through with your doctor and see if there's an option of a second opinion as this first appointment was totally confused by the registrar and consultant having differing views as to your treatment.

I do wonder what pressure is being put on departments to process o/p waiting lists as quickly as possible