Hello EveryoneI thought I'd write a little update following the disaster of Amiodarone given to me post keyhole heart surgery.
I had my surgery on 11th September. I was put on Amiodarone to regulate my heart rhythmn and rate post surgery. The surgery went well but the effects of Amiodarone on my thyroid replacement hormones (Armour Thyroid) were/are a disaster.
Amiodarone has a very long half life of up to a 140days! I can say without doubt it's been the most scary three months of my life. And ended up with two energency ambulance admissions to hospital recently due to high heart rate and chest pain. Despite this I waited for 16hrs for a bed, was kept in a&e in an ICU waiting area sat on a chair with nurse hovering nearby doing periodic obs checks incase one of the group of us waiting collapsed. The odd sandwhich or drink offered about every 6 hrs. As am ciacs of no use to me. Hot drink welcomed but sent my son shopping.
Amiodarone like many heart rhythm drugs works by lowering T4 to T3 conversion but in addition Amiodarone also affects peripheral uptake and conversion too. If you like it creates a chemical blockade causing thyroid hormone resistance. This resulted with initially over range thyroid hormone levels in the blood, high heart rate (tachycardia) and an intolerance of my NDT Armour Thyroid. After a while I was only able to tolerate a quarter of my usual daily dose. In turn this caused my thyroid hormone levels to tumble down in a dramatic way becoming under the range rapidly. Far quicker than one would normally expect. TSH has remained supressed all the way through out no matter my level of thyroid hormones whether high or very low.
The NHS are obsessed with testing TSH only. Even the A&E consultants are not allowed to test more than the TSH.. So shocking. It took a cardiogist on the ward to be allowed to get Ft4 & Ft3 tested as well. They are all told its too expensive and unnecessary!!
My GP is now only allowed to tick a TSH box. This despite the known effects of Amiodarone on thyroid hormones. But a private test is not accepted either, even one done in a NHS lab but done privately!! So none of those are registered on my file despite been given copies.
The lack of support by the NHS has been harrowing and truly frightening. My GP Surgery offered no follow up and were not responsive to the problems I was and am experiencing. Not even seeking further advice. They are contactable only via the NHS app. When I had the energy I would create a big storm but their response was I am too complex for them. They only deal with simple these days. I have felt truly alone. On the ward the usual nonsense of medications not being implemented correctly. Eg meds that should be kept apart given together and given with meals.
Tbh you just cannot afford to be too ill to not self manage.
Ultimately I sought a private Endocrinologist who has been and is amazing. He is very familiar with the terrible effects of Amiodarone. Gradually the Amiodarone block is now starting to ease a little after being off it 70days and by very slow tiny increases I'm now able to take half my usual NDT dose and it looks like my plumetting low thyroid levels have finally plateaued but are not yet coming back up. The lack of support from the NHS has been astounding and truly scary. They happily admitted me did bloods and ECGs but getting a full thyroid panel has been gold dust. No plan created, discharge a joke with no contact from GP.
Currently I am finally starting to improve but suffer with chest pain on exertion which am told is due to ongoing very low thyroid hormones. This is starting to lessen a little. Despite all of this my heart surgery has been sucessful and I remain in normal synus rhythm.. I'm going to be wearing a heart monitor for three days to check this in depth over xmas... this is standard post op proceedure. .
But the madness of the TSH only rules even in the face of a massive negative reaction to a drug imposed on me by the NHS without my consent. I was only on it one month but the consequences have been huge. I don't know if their has been any damage done yet to the heart structure as no echo cardiogram has been carried out!! Probably another cost saving measure. ECGs look fine but a little faster heart rate.
My Endo think it will take a few more months to get me back to where I was thyroid hormones level wise.
My GP Surgery has offered no post op care, not even booking blood tests they should've done. I have had to kick out hard all the way through despite feeling desperately ill to get them to do anything. Their note taking is shocking and for some strange reason now I'm cannot view the notes taken on my electronic file. I don't know why! Even their senior GP couldn't make sense of what the other GPs have written and had to ask me to explain. Chaos!
The only chunk of hope was/is the heart surgeon, a kind caring man who gave me his email to send through my Kardia readings to him to anslyse and he replies. Bless him. This was a device I purchased privately post surgery to try and understand what was happening. My surgeon was pleased I had.
Those of you who know me know that I am a proactive patient and am used to fighting my corner but there are limits to what you can do especially when really ill. Even two of my friends, one a retired nurse and the other a retired Consultant are unable to get their GP surgery or the NHS to do appropriate much needed blood tests etc....it to act. It feels increasingly like a service in name only. Third world country level
Anyway my thyroid hormones are finally starting to stabise but it is no thanks to the NHS. I'm hoping 2024 will be a much healthier year and one to be enjoyed.
Written by
waveylines
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Please be careful and get any mental healthcare you need… it sounds as though you have been through the mill and PTSD is not just for soldiers. I hope your journey will now become more and more positive the further away from the Amiodarone you get and I wish you all the best for 2024!
waveylines that is a succinct report. However it is terrifying and pretty much bolstered by my experience; whilst nothing as bad as yours. I have also been treated incorrectly on a number of occasions and I now know to look out for and question any protocols - if I can. Protocols designed by NHS for NHS staff as they very rarely seem to be for the patient’s benefit. How can we comment when they are not revealed to us? Very annoying in that so much trust has to be placed in these people.
Also the state of our GP practices is dire too.
If you can, this really ought to be read by someone who might be powerful and minded enough to do something about it.
The situation you have been put in is not just scary it’s outrageously stupid. I am sorry that your cardiologist (because surely it starts there no matter how grateful you are to him/her) created no plan post surgery for you and did not discuss this with you properly before the operation. I did check, there is another drug for your situation. It’s not as effective but neither is it so damaging for people with thyroid issues.
Thank you for describing your experience so well. It is, unfortunately, a very important signpost for many of us.
Thank u Tistapple. Only by the grace of God am I turning this slowly around and with thanks to the lovely people on here recommending their Endocrinologists so I could find a best fit for my needs.My heart surgeon is a good man. He is top in his field. He is doing his best in a system that he says isn't safe. He is right. It isn't.
If people want a safe effective NHS they are really going to have to fight very very hard for it... as the standard, well what standards there were aren't any anymore. Free for all and pot luck is what exists. Neither political party is truly fighting for our NHS.....
I am so, so sorry that you have been through all this and continue to be affected by the amiodorone. Your GP surgery sounds appalling. Any chance of moving to another? We had to. It’s better but still not brilliant (I was told I could only have TSH done last week & said I’d be sent back by my endocrinologist for the rest if they weren’t done, which I think worked but I have yet to get a copy of the results). I do hope you begin to feel better soon as you’re able to increase the Armour dose.
I thought about moving many times. However I get my NDT on the NHS and I fear another practise may not support this. When I'm better I will look again. You are right my current ones are plain useless, even dangerous tbh.. Xx
Ah, that’s definitely a consideration. I’m on Armour too. I have to buy it privately, but our GP practice agreed to do the necessary blood tests. Best wishes for Christmas & good & speedy recovery.
Glad you've managed to get through what's been happening to you. Also being able to document what you experienced must have been difficult but essential.
A friend with a heart condition also had a bad experience with Amiodarone. No one told him of any adverse affect on his thyroid and ended up being prescribed steroids when thing's went awry. It was some time ago but it did take some time to rectify.
So sorry to hear what happened to your friend Hedgeree. Dreadful. I've heard of others with pre existing hypothyroidism also suffering when put on Amiodarone. They seem to think if it's pre existing all you have to do is increase the dose!! That does not work!!
wavylines, so very sorry to hear about your ordeal by NHS. It is frightening. You do wonder if there is a mission to reduce waiting lists by omission (of appropriate) treatment. It really does make me wonder who would advocate for me if I ended up in hospital too ill to know what they were doing to me.
I think I would be inclined to send "the story" to your MP/ Pals at the hospital etc. Maybe someone will recognise their is a problem. Surely NICE should have something in their guidelines about Amiodarone and thyroid patients.
Wishing you all the best on your journey back to health.
Nice does have guidelines about Amiodarone and pre existing hypothyroidism....it's contrary indicated. I don't think it's planned at all.... the omissions I mean. The NHS has just crashed. Doctors have been warning about this happening for years now.... And have tried to keep going...... But they just can't anymore. So the impact is to keep reducing and reducing what they do and who does it and what. So systems have grown to reduce direct access like the NHS app. GPs have reduced their role and just signpost on, they still can't cope. People are raiding savings taking loans out to get private treatment so now that sectors booming but struggling too with the demand. The truth is there isn't anywhere to go now and successive governments just have not planned. Just avoided dealing with it.... As they are right now tbh. It should be a red hot potato once election is started.... But both Conservative & Labour are keeping quiet. Originally the NIC was set up to pay for the NHS but it was raided years ago and that money is used for many other purposes, not NHS.
OMG this sounds horrendous. I am very very shocked but not at all surprised as any interactions I have had with the NHS have been equally disastrous albeit for not such life threatening conditions. It terrifies me as to what it will be like in my old age when I don’t have the same agency!
I hope you are well on the way to healing now & have a relaxed & peaceful Christmas.
PS I wonder if you would be kind enough to DM me the name of your wonderful private endo? Thanks ☺️
Sorry to hear of your distress. Amiodarone is made up of Iodine so it doesn't bode well for thyroid patients, I am pleased that you are managing to sort it out. Good Luck.
It's not just the Iodine, if my memory serves right it has 36%iodine content - it's standard daily dosing is something thing like 20xs what you would have as a max in your diet. It's also what else it gets up to, like creating DEA. Iodine will mess up the thyroid gland but Amiodarone has a secondary effect on the peripherals too reducing uptake and conversion. Never mind it's potential to cause other organ damage. A more scary drug I can't think of. Called the drug of last resort for a very good reason.
Pretty dreadful story, I hope you are better soon. This is what happens to an expert patient, heaven knows what other patients suffer.
The blood tests are cheap, as shown in my FOI request:
London North West Healthcare NHS Trust is responding to your Freedom of Information request received on 28/07/2017.
FOI Ref: 1003-17
You asked:
The cost of a TSH and fT4 assay.
The cost of a combined TSH, fT3, fT4 assay.
To clarify, I'd like the net fee paid to The Doctors Laboratory to carry out each of the two assays.
-------------------------
In response: TSH cost £0.90, fT3 £0.92, fT4 £0.92
These costs are set whether they are combined or ordered separately, just added together as per order.
I suggest you put in an FOI request, using whatdotheyknow.com/ as it guides you and the world can see it.
Using amiodarone is dreadful, the cardiologist should be specifying cardiac medication. I think if I need hospital treatment I will specify that under no circumstances is my liothyronine to be adjusted without my consent and amiodarone and propranolol must not be used.
I try to exploit the fact that most of the NHS is lazy, they will take the path of least resistance / decision making, make it clear that messing me about will incur extra effort. This seems to work. There are lots of great people in the NHS but most just want to go through the process and have an easy life.
It would be useful to find out what lab your surgery use for blood tests, in many cases it is the same one that does private tests. If they refuse to put your results on your record make a simple complaint when you have the time.
Thanks Jim..... So not expensive at all then!! 🙄😤I think I'm regarded as a stroppy patient already but when ure under an anaesthetic or recovering from one there's very little you can do. I will try to find out. A friend of mine worked in one of the labs for the NHS before it was outsourced. The NHS one I used was down south. I think my local hospital uses one in the north. Both NHS labs though.....
When I'm better I will pursue this....mainly because I'm sooo disgusted and it would be a useful way of refocusing of my anger on something more purposeful !! 😂
Are there alternatives to Amiodarone that are usable in the circumstances you were/are in? Has anyone mentioned any alternatives they could have tried? And what would have been the outlook if you hadn't been given the stuff at all?
Is Amiodarone is one of those drugs like statins, that people can live without, but doctors think patients are going to die if they don't take them?
I've just read a little bit of this paper, published in 1998 :
Amiodarone and the thyroid: a practical guide to the management of thyroid dysfunction induced by amiodarone therapy
Restoration of euthyroidism once amiodarone is stopped can be accelerated by the administration of potassium perchlorate in a single daily dose of 1.0 g for up to five weeks. 33 34
References 33 and 34 are :
33 Martino E, Mariotti S, Aghini-Lombardi F, et al. Short term administration of potassium perchlorate restores euthyroidism in amiodarone iodine-induced hypothyroidism. J Clin Endocrinol Metab 1986;63:1233–6.
34 van Dam EW, Prummel MF, Wiersinga WM, et al. Treatment of amiodarone-induced hypothyroidism with potassium perchlorate. Neth J Med 1993;42:21–4
Please remember the age of these references and the original paper I gave. I don't know if this treatment is still used.
This link about the medical use of potassium perchlorate may be of interest :
Thanks Humanbean. No its no longer used. It can be very dangerous. I did ask about it There is one alternative drug that could've been used instead. Less effective on controlling Arrthymias but it also comes with a catalogue of serious problems albeit different ones, though interfering with thyroid hormones is not one of them. Difficult to say whether I would have faired better on it or not. My op probably did need some support post op as the effects of surgery take several months before getting the full effects and in the meantime the heart has been upset with radio waves to create scarring. Some people don't require drug support post surgery. I suppose it all depends on how your heart responds and what has to be done. A discussion would've been welcomed as well as a plan. And much, much closer. follow up than I received. GP surgery were meant to be taking over care but failed dismally. Offering almost non existant care... only what I demanded & that was hard won.. Shambles/negligence is how I'd refer to GP care..
So sorry to read of your horrendous experiences waveylines!
But thank you so much for posting! I am both hypo & having dilated cardiomyopathy with lbbb & poor ejection fraction (supported by latest medicines regime & a fitted ICD).
I recently had confirmed continuous asymptomatic AF. My cardio consultant has offered me ameridione as first line treatment for AF. But in discussion with him he clearly wasn’t au fait with the issues that can arise down-regulating T4-T3 conversion and in my area, access to T3 meds is “endocrinologically highly restricted” to say the least.
Having done my own due diligence on ameridione and given a range of side effects, but especially regarding thyroid hormones, I had begun to think of barge poles & your experiences confirms that in spades!
I definately would not recommend Amiodarone with Hypothyroidism. I'm not the only one whose had a bad. experience with it who has pre existing hypothyroidism. Amiodarone should never be used as a first line defence for Afib either!! This is because it also can cause damagev to other organs like lungs kidneys liver.... . Usual protocol is:-
1. beta blockers (again lower thyroid conversion but at least the drug leaves body within 24hrs!), Cardivilol is supposed to be heart specific.
2. Calcium channel blockers - Verapamil worked for me for several years.... It does lower thyroid conversion but is a heart specific not generic.
I assume your cardiologist has put you on an anticoagulant or has at least accessed your risk level for a stroke?
What you need is a very good Epiphysiologist (EP) ... Specialist Cardiologist.... who specialises in heart Arrthymias. They know far more than generic cardiologists.
Gosh - that is truly scary. I'm having open heart surgery on Monday with only 5 days notice in order to repair mitral valve and pare down a septal bulge. Was told this would entail post op meds which may interact negatively with my thyroid meds, calcium supplements, and Stage 4 cancer meds. Like you, I advocate strongly for myself when well but am worried what will happen when i'm out for the count. In fact i might take in a flip-chart page to put behind my hospital bed that highlights cautions: lymphoedema (no BP/injections on left side), thyroid meds 1hr before food, as low a dose of cocodamol/morphine as possible (gilberts), and avoid making my acidotic as Pendreds (thyroid) means I cannot regulate replacement bicarb excretion. But you are obviously very resilient and are slowly recovering which provides hope.
I think that's a great idea. I usually take a separate bottle of thyroid meds in so I can palm theirs because getting them to understand /deliver an the hour before eating just seems too hard for them to manage. I'd have a chat about what those post op meds might be. Some are worse than others.
A friend of mine had mitral valve surgery last summer. She is bouncing around now.
Wishing you every sucess with your heart surgery and hopefully a smooth recovery. Xxx
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