How to help?

My husband was diagnised with hyperthyroidism about a month agi and is taking 5mg carbimazole three times a day plus has had twi B12 injections with two more to come. I don’t have acces to his test results but I suspect from Google that he has thyrotoxicisis from the amiodarone he takes for atrial fibrillation. Some days are okayish, others not. How can I best help him? We are in New Zealand - good GP.

[jimh111]

Although the GP is good it would be a good idea for him to see an endocrinologist for specialist care. Hyperthyroidism can cause atrial fibrillation or make it worse. His dose of carbimazole is low but the dose will depend upon his response.

Amiodarone has effects on thyroid hormone, principally reducing the conversion of T4 to T3. (T4 - thyroxine is the main hormone secreted by the thyroid but it has to be converted to T3 which is the active form). Amiodarone has many effects on thyroid hormone action, see pmj.bmj.com/content/76/893/133 . I have not read this paper, it's just for you to look at the first paragraph and perhaps pass to the GP. It might be an idea to have the GP prescribe a different beta blocker and let an endocrinologist check out your husband if he hasn't already seen one.

Hyperthyroidism has many effects including anxiety, so it will help if you and your husband know it can cause emotional upsets.

[dboy321]

Make sure the bloods are frequent! I went from hyper to hypo in less than 2 weeks on that dose of carbimazole! I'd say he needs to ask his endo (if he has one) for ft3 ft4 and antibody tests to rule out graves disease! Also cortisol swap to check adrenals

[Hidden in reply to dboy321]

Thank you. He does have another blood test scheduled for two weeks from now. Do things carry on ‘up and down’ forever?

[dboy321 in reply to Hidden]

Every case is different so I'd wait and see what the next bloods reveal! I hope they aren't only testing TSH? This is bad practise but is so widespread Bonny! Push to see an endocrinologist at the very least! Doctors basically only treat the symptoms rather than understand the cause!

[Hidden in reply to dboy321]

Fortunately they do test T4 and T3 here, but I so agree about treating symptoms.

[dboy321 in reply to Hidden]

I wish you both all the best of luck in finding a quick answer! It is not nice to be so hyper but to swing from hyper to hypo can be challenging! But it is all manageable Bonny! Keep with it!

[jimh111]

I've had time to read the paper I referenced, it is good but perhaps not up to date. I don't mean you to read it, it is very technical. Rather, it gives an impression of the complex effects amiodarone can have on thyroid processes. Usually amiodarone produces hypothyroidism and so can be a good beta blocker for someone with too much thyroid activity. But in a minority of patients it can cause hyperthyroidism.

Depending on the severity of your husband's atrial fibrillation they may be able to switch him to a different beta blocker. Amiodarone sticks around in the body for a long time so it would be several months before the effects wean off. If necessary they could give him medication to get rid of the iodine (from amiodarone) more quickly. Amiodarone also messes up thyroid hormone levels, you don't get the usual picture from blood tests, this makes them difficult to interpret. In all thyroid cases it is important that the patient tells the doctor how they are doing, so that they treat the patient instead of the numbers. This is even more important for someone on amiodarone, they should not rely on blood test results alone.

So what I'm saying is see if he can come off amiodarone and make sure there is expert care (an endocrinologist?) for at least the period he is switching over to other medication. Without seeing the blood test results it's impossible to have any idea whether he is truely hyperthyroid due to a thyroid problem or whether his current hyperthyroidism is a consequence of the amiodarone. Please note I am a patient not a doctor.

[Hidden in reply to jimh111]

Thank you for your thoughtful replies. His details have been sent to the hospital endocrinologist and he is on a wait list to be assessed there. He does not want to ‘go private’ and also does not want to stop his amiodarone, because that is the only thing that has stopped his paroxysmal AF, which had him in the ED on several occasions in the past. He also has moderate heart failure and can suffer from terrible migraines if his diet is neglected. He is very brave but has lost so much weight and looks awful. He did go through a hypo phase, I think, of being very cold and deep shivering, some months ago, but nobody picked it up. He is 72 and I am a fit but worried 75. I don’t talk to his doctor - patient confidentiality. I do try to keep life stress free for him, but think I could do more, hence my inquiry.

[jimh111 in reply to Hidden]

That sounds reasonable, I believe there are cases where amiodarone is needed, other drugs don't work (I have no knowledge of cardiac issues). Maybe his GP could reasses his thyroid status and clinical condition with a view to incresing the carbimazole if indicated.

[weatherman]

I developed thyrotoxicosis whilst taking Amiodarone for Paroxysmal Atrial Fibrillation. I believe about 7% of people on Amiodarone suffer thyroid problems - my mother did too! In my case it was probably the iodine in the contrast medium used when I had an AF ablation to correct the AF that finally triggered the problem. I went from 2x the normal thyroxene level to 10 x in two weeks. I was on a high level of Carbimozole (20mg) for three months before my levels returned to normal. I was off Amiodarone by then but it took me several months to feel well as the thyrotoxicosis had triggered high levels of anxiety which caused heart irregularities which mimicked the effects of the thyrotoxicosis. That was 4 years ago and I have been free from AF and thyroid problems since (although still on a regular beta-blocker: Bisoprolol). Ordinary beta-blockers may not be sufficiently effective to prevent paroxysmal AF. It is important that your husband is treated by both an endocrinologist and a cardiologist to deal with his problems. There are alternatives to Amiodarone (Dronedarone is one that I have heard of) but only a cardiologist would be able to advise which would be suitable or sufficiently effective. There may also be the possibility of an ablation to cure the AF - but be aware of the possible danger of iodine in the contrast medium. Amiodarone has a half-life of around 100 days so it takes a vary long time to be out of your system - so if it is the cause of the problem it needs to be identified and dealt with (replaced or managed) as soon as possible. It is important your husband's thyroid levels are monitored frequently as they can change quite rapidly (more rapidly that usual thyroid effects) due to the effects of the drugs. High thyroid is distressing and debilitating - weight loss and fatigue are part of it as is the risk of anxiety. However, with good management it can be dealt with and I'm sure your husband can get back to good health in time. I wish him well and you too as you support him.

[Hidden]

Thank you so much for this reply.

[Dirkster]

I too have had Amiodarone induced thyrotoxicosis about a year ago and am just close to getting straightened out now. At first I went hyper, lost weight, had a tremor and ironically went back into AF. So a point to consider is if Amiodarone causes thyroid problems which in turn can cause heart rhythm problems then maybe something else such as a cardiac ablation could be discussed to treat the underlying problem?

After being stubbornly hyper I went the other way and became hypo and that gave me some mental challenges. I had delusions and wanted to withdraw from the world at times. I became so delusional that I entered into my diary an appointment with a doctor that turned out to be completely fictitious, it wasn't until I queried the appointment with my hospital that it turned out the doctor I thought I had an appointment with didn't exist. Things like that have alarmed me.

Good luck.

[Hidden in reply to Dirkster]

Thank you for this reply Dirkster. My husband also has ‘moderate’ heart disease and a poor family history of cardiac problems so I imagine that is why he has not been offered an ablation. Your story is scary and I do not know how we would cope with delusions etc. So far he is still coming off the hyper stage and seems more comfortable overall - I am now scared of ‘‘what next’ but will just have to take it day by day. All the best for your recovery.