T4 over range yet again due to side effect of Amiodarone. I have no thyroid, am on 25mcg levo daily now. In a dilemma

[DizzyD]

Hi all I am aware that most people on this site will have little knowledge about the drug Amiodarone so here is a brief account of what it is used for and it's potential side effects that can alter conversion of thyroid medication such as levo or NDT so pushing levels either up or down. It can also effect thyroid function (levels) of a person who does not take any thyroid medication at all, hence thyroid levels can also go up or down This medication is iodine based so it is quite toxic to the thyroid and many other parts of the body but as this is a thyroid site I will stick to thyroid issue only. Another point to mention: The half life of this medication is said to be 6months according to some medical doctors while others, ie, my endocrinologist reports that the iodine can stay in the body for years at a time. This medication is used to treat AFib which is the reason why I was prescribed it on 17 April.

At that time I was on 75/50 levo alternate days. Thyroid tests were always ok. After taking Amiodarone for 7 weeks began to experience hyper thyroid symptoms. Test revealed T4 was over range. GP reduced levo to 50mcg daily. I also reduced Amiodarone from 200mcg to 100mcg daily. Honestly believed reduction of both meds would make a difference. Repeat test 8 weeks later despite reductions T4 still over range. In fact on comparing previous blood test there was virtually no difference at all in the results. Hence endocrinologist reduced levo to 25mcg daily which is my present dose of levo. Furthermore, I stopped taking Amiodarone altogether when levo was reduced (8wks ago) for the second time. Will this make a difference? I suspect it wont. Do believe the lengthy half life of Amiodarone will still push the small levo dose over range.

Furthermore, have had no AFib attacks since stopping Amiodarone which could also indicate it is still present in my body due to the extensive half life of the drug.

I still have hyperthyroid symptoms, anxiety, hyper active, always on the go, sweating a lot, unable to relax, always thinking what can I do now. Rise in BP. Today I am exhausted....kinda burnt out, did not sleep at all last night.

Anyway getting private blood test via Medichecks on Tuesday morning an will be surprised if T4 is within range. Let's hope it is in range if it is not in range dread to see how much further levo will be reduced.

What do you guys think? Really would appreciate some feedback. I have been pencilled in for maze procedure in Sheffield to treat AFib in November an really concerned that thyroid issue and hyper status could set the date back. Whoops after this procedure the standard treatment is Amiodarone....!

[RedApple]

Sorry you've not had any comments yet DizzyD. My reply will bring your post back uo the news feed, so hopefully others will see it and be able to comment.

[DizzyD in reply to RedApple]

Thank you RedApple. I suspect Amiodarone is not a topic that people on this site are familiar with, hence no replys. Lol but then again my post maybe too long.

[Regenallotment Ambassador]

I had the symptoms you describe when my T4 was over range too. (But I don’t have AF and still have an uncooperative thyroid)

is your ferritin high? In mine it was contributing to over range symptoms.

Advice for symptom management, as it sounds like you are riding the wave, keep the sugar and stimulants down especially in the evening, dark chocolate after 4pm gave me palpitations.

Drink lots of water to flush out, read up on adrenals and support as the constant rush leaves you depleted eventually.

Sleep - (this advice from psychologist) if you are totally wired, stay up, potter about until tired and sleep when tired. Lying in bed failing at falling asleep is not helpful. However, circadian rhythm is important so get daylight in eyeballs at 7am every day (till it’s too dark at 7am 🤣) if you can then train yourself to ignore the 3am wake ups, takes practice but eventually you get the hang of it.

Have you got a fast tum too? My first sign of levels returning to normal is less frequent and firmer stools. Learning the signs 🤗🌱

[waveylines]

Hi DizzyD. Looks like I'm treading the same path as you but I'm on NDT Armour. I was NOT keen to take Amiodarone following a mini maze op to sort my Afib out caused by cardiotoxicity from BC treatment 9yrs ago. However I was told I had to. I'm now a month in and yes it's causing problems. Had tachycardia at the weekend with HR of 107. So had a day off thyroid meds dropped my dose a little but last night woke again with racy heart.... Kardia showed suspected Afib. This could be part of healing but heart rate now 81.....much better. Im pretty fed up as my thyroid was well sorted, stable for years before this wretched drug was introduced as part of my post op meds.I've heard of the long life but am horrified that the iodine could linger for years. My understanding is its the iodine that reduces thyroid conversion, uptake of both T4 & T3 instead creating higher rt3 for the body to get rid off.

Yesterday I had some symptoms of over treatment with loose bowels. Today that's normal. So lowering is helping.

My worry is that is Amiodarone effectively blocks thyroid hormone uptake in peripheral tissues then it will render me Hypothyroid but with hormones back stacking. This was always my fear. I will ask the cardio thoraisic surgeon if I can come off Amiodarone.... It's meant to be short term as its not supporting me. However I think he will want Endo advice.

I now think I will have to contact my old Endo who am pretty sure will take me straight off Armour and compound my problems but if I dont then the hospital Endo who is notorious will end up advising which will be even worse.

So like you I am really annoyed and fed up! And not sure what to do.

As an aside your half dose of Amiodarone will take a long time to show effect due to the long half life. I'd rather stop it all together but want advice on other meds to support me whilst my heart heals.

[Contra21 in reply to waveylines]

Was thyroid the cause of afib for you?

[waveylines in reply to Contra21]

No it was caused by Breast Cancer treatment causing cardiotoxicity which caused the Afib.

[Contra21 in reply to waveylines]

I'm so sorry. How are you doing now

[waveylines in reply to Contra21]

I'm 9yrs in remission. 😊

[DizzyD in reply to waveylines]

Hi waveylines I also have quite a few episodes of random tachycardia and racing heart particularly when at rest or asleep and it wakes me up. Suppose this is could be due to T4 being over range but can't be sure because it does not happen when I active during the day. On the up side I have had no AFib attacks since stopping the Amiodarone 10 August which proves the drug is still working. Sometimes, I imagine that my AFib might be cured. Oh good grief just realised, the long half life of drug might keep me AFib free for a few years. Lol!

Amiodarone has also damaged my lungs so when I get breathless I don't know if it's a lung issue or heart related. So frustrating. Anyway that's another issue.

I not that knowledgeable as to how thyroid meds work on a deeper level, ie stacking issue you mentioned so got a lot to learn. Considering that I have had a thyroidectomy and I only take the equivalent of 25mcg levo a day I am baffled as to how the Amiodarone is still pushing T4 over range. How is this possible?

Personally I don't have option of endo advice re: this matter. Saw endo on 9 August, she advised me to get off the amiodarone, reduced levo yet again, promised retest 8 weeks time. Today I received letter to see her a year from now. What does that tell you?

Early 2020 top endo literally informed me that I most likely had heart damage after being over prescribed levothyroxine for 30 years. How right he was. Hence, my fear of prescribed medicine.

Not sure if I am still suitable for maze procedure now considering thyroid status and lung issue. Just thought of something, Lol! I May Not be given Amiodarone as post op treatment cos I already got a stash of it in my body!!!! Will question Mr Hunter about this.

Joking aside we got a long way to go sorting thyroid issue out. Remember, if Mr Hunter decides to stop your Amiodarone ask him how much protection will you have from remainder of drug in your body. When I saw him in May I told him Amio had slowed my heart too much. He suggested that I ask my cardiologist to reduce dose. He went on to correct himself saying, "No that won't work to raise your heart rate because the drug will remain in your body for a least six months"

[waveylines in reply to DizzyD]

OMG.... The night time tachycardia or heart racing....waking you up That's exactly what happens with me but don't notice it during the day unless I exert myself too much. So sorry to hear about the lungs. Can they resolve that?

I already have a lung issue so really hope the Amio hasn't affected mine.

I keep wishing Id said no to Amiodarone..... Too late now.

My resting heart rate is still in the 90s. But pretty sure that's thyroid hormones back stacking. Or maybe all that Iodine? Need to research.

I will ask him..... am pretty sure he'll offer beta blockers as there's not much else they can offer tbh. . I'm still on Verapamil. I will ask him how long for the scar tissue to form sufficiently? I thought that was 4months?

[DizzyD in reply to waveylines]

I was taken off verapamil when I was prescribed Amiodarone. Suggest you check this out. Don,t think these drugs should be taken together. Hope I am wrong.

[waveylines in reply to DizzyD]

Well I was happily served up both in hospital and it's on my discharge notes. Though they also wrote HyPERthyroidism instead of Hypo.... And also wrote Subclinical HypERthroidism but missed of Hypotension but listed Levothyroxine and Liothyronine on my meds 😯😯😯 Which was worrying. Think someone needs to check their medical dictionary. I did notice Verapamil was contraindicated with Amioradarone as is having Hypothyroidism.... And mentioned that. And emailed about it too.

Forgive me for being so disgruntled...I'm annoyed because for once I put my total trust in the medics and did what I was told & let them do their thing! Hmmm.... However the surgeon is without doubt a brilliant one and was very lucky to have him doing my op.

[DizzyD in reply to waveylines]

When it comes to surgery, without any doubt, I have total trust in Mr Hunter. Not even bothered if I went off into the great unknown during surgery and never walked the earth again. However, medication cock ups really does concern me a great deal.

[GlowCoach Administrator]

I'm sorry that you're not well and that this is proving difficult. It sounds like Amiodarone doesnt agree with you or being hypo.

Are there any other meds they can try? Might be an idea to ask on the AFib board.

[waveylines in reply to GlowCoach]

Hi Jaydee. Amiodarone is listed as contrary indicated for hypothyroidism! I did point this out prior to treatment and asked for a different drug. Unfortunately it has an exceedingly long half life so unlikely to get it out of my system for months. It's difficult post op to stand up for yourself when ure not well in hospital and given the specialist nature of my op I felt I had to trust the surgeon. But I now feel had! Truly. I will ask re alternative. I have already asked before. I don't think I should have been put on it.

Have been on the Afib site. Trouble is they don't know about thyroid. 🙄🤣

[GlowCoach Administrator in reply to waveylines]

Ah I knew I'd seen someone else posting about this drug and hypothyroidism. Honestly some doctors should never have qualified. Hopefully you two can support each other through this. Doesn't sound lie it should have happened though. I'm sorry.

[waveylines in reply to GlowCoach]

Thanks Jaydee. Trouble is in the heart world many of the drugs work by lowering thyroid conversion...... Lol.

[GlowCoach Administrator in reply to waveylines]

Yikes. I was thinking though that in a way you are better off on Armour or at least something with T3 in as dose reductions/increases will be felt faster.

[waveylines in reply to GlowCoach]

Yes except if peripheral uptake is inhibited then both thyroid hormones will back stack and the long levity of the amiodarone means months of this! I'm feeling really fed up. 😢

[GlowCoach Administrator in reply to waveylines]

Sending much sympathy.

[waveylines in reply to GlowCoach]

Thank u Jaydee.... ❤️❤️

[Delgor in reply to waveylines]

Oops - I inadvertently clicked on like when I shouldn't have done. Not surprised you feel fed up with all that is going on. Sending more hugs xx

[waveylines in reply to Delgor]

Thank u Delgor. Xx

[Torquaygirl]

Not sure I can help as I am seeing endocrinologist in November. I too am on Amiodarone for AF. Just came out of hospital a month ago, after a tortuous journey of them trying to resolve the AF with numerous drugs, all not working. Amiodarone was the last call and worked but I can only have for 3 months.

I was sub clinical hyperthyroidism prior to admission, with just annual check up, what I realised is I do have some symptoms, hospital checked thyroid and TSH very low and I have no idea of the rest till I see endocrinologist. They did urgent antibodies as I have Sjogrens. I have been put on 5 mgs of carbimazole too as the cardiologist said Amiodarone is so toxic!

I would suggest you getting checked out if not already??

I have seen on here some need something called block and replace?

I am hoping we can both get off this toxic drug but I don’t want to be back in hospital with AF again!

🤞 endocrinologist can help us

I will watch out for comments on here as I am just learning about hyperthyroidism

[DizzyD in reply to Torquaygirl]

Sorry for late reply...something technical went wrong with my device. Fixed now. Did hyperthyroidism trigger your Afib?

I took Amiodarone for roughly 3 months, 200mcg for 6 weeks then I reduced dose to 100mcg early June after it pushed T4 over range, Took the lower dose of amio for further 6 weeks, after retest T4 was still over range. So stopped it completely on 10 August.

Recent retest revealed very high TSH 11.9, T4 bottom of range, T3 near bottom of range. Have no idea what's going on here.

The important thing to remember Torquaygirl is that Amiodarone can push thyroid numbers up or down in a short space of time which can complicate things for the endocrinologist ie getting accurate thyroid test results. Most endocrinologists don't know how to deal with the effects of Amiodarone on thyroid patients, medication dose etc which is why I am now in a position whereby I trying to find endocrinologist specialist who will hopefully have more knowledge.

Like yourself, I was thrilled to bits that the Amiodarone stopped AFib attacks. As already stated, have been off it since 10 August and so far I have not had any AFib attacks. Have had some tachycardia episodes so not sure if AFib will eventually make itself known.

Please is updated with any developments.

[Torquaygirl]

Hi thanks for this. Yes cardiologist told me it was not a great drug for me and that is why they started me on the Carbimazole 5 mgs OD. I am a bit up and down at the minute so suspect things aren’t right. I am not sure if hyperthyroidism caused the AFib, as I did not get full blood results in hospital they just said TSH very low and endocrinologist will see you urgently. I also have sjogrens so that may be causing thyroid problem. I am due to be seen week after next. GP can’t do bloods in time, so I asked them to leave it. I see rheumatologist next week and know they will want bloods (I am very difficult to get blood as they can only use 1 arm due to breast cancer in the other and since hospital admission a lot of veins have collapsed in the one arm!). I feel a bit in limbo but in hindsight I feel I have been getting symptoms over the summer like I am hyper (sadly no weight loss though), tremor, excess sweating, anxious. My TSH has been dropping over the last couple of years, but other readings were within range. I wonder if you can get symptoms when sub clinical hyper? I know they had to do urgent bloods in hospital for antibodies, so hoping this might show what is going on, I have a copy of email from endo saying it could be antibodies or a nodule. Hopefully may know a bit more soon.

Great to hear your Afib has settled, I am hoping that if this thyroid prob is resolved then mine will too, otherwise they have threatened me with all sorts of procedures….