I've read a few posts about this subject and fear the drug is starting to affect my thyroid. I have never previously had any abnormal thyroid results and all bloods were ok before I was prescribed amiodarone in December.
I was tested again in Feb 2 months after starting Amiodarone (which put me back in SNR and I've remained there since January).. My TSH level then was 3.0 I was retested in May and it was 5.49 although I wasn't advised as it was within the parameters of normal (0.35 -5.5)
To cut a long story short I became concerned that my Blood pressure average went from 126/75 (where it been for a long as remember) to 147/80 almost overnight and it has stayed at this level since. I saw my GP last week and he arranged another blood test where TSH level was 5.34.
As NHS don't test any other markers I had a private Thyroid test and these are the levels:
"Your TSH is raised, so suggests a need for more thyroxine, but your thyroxine level is normal. This kind of mismatch can occur when the body's metabolic needs temporarily change, for example with a viral illness.
I would suggest repeating this test in two months to verify it has normalised.
The elevated thyroid autoantibodies are associated with a higher risk of developing thyroid disease, especially if you have thyroid disorders in your family. The level of the autoantibodies is not usually considered to be important. Even if your next test is normal, I would recommend monitoring your basic TSH/FT4 each year."
I've made an appointment to see my GP but for various reasons not until 22 August.
I'm just wondering if those with similar experiences could advise if I should be concerned or if there is any action they would recommend.
Many thanks
Sue
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diminished7th
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In a nushell. I was warned off Amioderone years ago. A consultant had missed on my records that I had a dodgy thyroid. He was about to prescribe Amioderone and I stopped him in his tracks .I am not a medic but i understand from talking to other docs since that time that Amiod. should not be prescribed if you have Thyroid problems.
I have been on Amiodarone for about two years now and I've recently been diagnosed with hyperthyroidism, which my GP has said that the Amiodarone has started to affect my thyroid. I have also been told by consultant that at present I cannot have meds for this as it will affect the afib problem. Got to have regular bloodtest to keep watch levels
I had forgotten about Amiodarone affecting the thyroid until I saw this.
I stopped Amiodarone on my own as it was taking my body down rapidly.
I cried to my EP. Tsh did increase and my hair was falling out along with many other side effects. It went back to normal when I stopped it. For me it was a debilitating. It takes 3 months to leave the system.
Do your own research. Become more aware of your own body signals. The body knows. We don’t have to take these meds. I stopped.
I think medications are bandaids. Went for a year without AF. Jan this year somehow it had returned. I had 2 cardio versions at the onset of AF (caused by a doctor who changed bp pills that were working fine). He said they were old. I had a feeling he didn’t know what he was talking about. My GP for 23 yrs retired and I had no major issues with BP until the ego doctor changed the bp meds. Wish I had never taken them. Turned my world upside down 12-2019. Was pouring hot water for tea when I passed out fell went into AF, T10 fracture and 3rd degree burns from the hot water.
That was the start of the nightmare of AF. Never knew what it was until the meds change. AF showed up 12-21. After the crazy 7 days hospital stay I was sent home with 14 meds that almost killed me.( overmedicated) Amiodarone being one. Stopped it. No reason AF showed up again Jan 2023. I researched everything about medication’s that cardiologist prescribed benefits./side effects, and got rid of the electrophysiologist that prescribed amiodarone. I would never have imagined that I would be a candidate for cryoablation. I found the best surgeon in Arizona or maybe even in this country that trains doctors from all over the world. I am two months into healing from the cryo- ablation on May 16 . I’m really happy with what is taking place. Blood pressure is down low. I am also looking for a new cardiologist who actually has an open mind. I’m sure I don’t need all these pills anymore. I stopped sugar and all refined and processed foods in February. My life is changed, for the better. I now do intermittent fasting because there’s no sugar to make me hungry anymore. The brain no longer is triggered by sugar and certainly the liver is much healthier. Once I go to the cardiologist in another month, I am sure the medication‘s will change based on all of the things that I have done to help my self heal. I still take some Eliquis and Clopidogrel I don’t need both.
This is life changing after the cryoablation. I know everybody is different- not everybody is aware of how to heal without all these man-made chemical medication‘s. The side effects themselves from Amiodarone are enough to scare anybody.
I’m not sure where you’re located. Look up Dr Wilber Su, Phoenix, Arizona, a leader in cryoablation and it keeps getting better and better all the time.
I have not replaced amiodarone with anything my body said no and I’m grateful that I listened.
Also diagnosed with mitral valve regurgitation from the blood pressure being so high for so long after that Dr gave me the not so good blood pressure med. I’m determined to heal this beautiful heart 100% -anything is possible.
I really wish you the best. Do your homework. Do the research. Look at what you eat- is it real food? these things do matter. How much do you love your precious self to focus on your own healing with a supportive doctor not a checklist doctor . There are some great open minded healer/ doctors out there. I used to believe doctors were Gods and now based on my own story I now know I’m in charge. If they don’t listen get rid of them. You are your own pharmacy/healer. Work with someone who is integris and cares. They are out there.
I'm treated at Royal Papworth Hospital, one of the best in UK. Had three ablations, lasted average of four months each and took six months to recover from. If I don't take drugs I'm being cardioverted all the time (once twice in 18 days) It's not a life like that
I'm afraid that I can not advise, but I have found myself in a similar position. I have been on amiodarone for a few years, and was recently diagnosed with an underactive thyroid, following blood tests. This has not been definitively linked to amiodarone. Thyroxine has helped a great deal, making me feel generally a bit better, and helping me lose weight (quite rapidly at the moment!). My cardiac team are of the opinion that amiodarone is doing more good than harm, as it is keeping me in NSR. So, unless the side effects become dangerous, it looks like I am staying on amiodarone
I believe the amiodarone has been good for me too. I really need to wait until I see the GP in August and get bloods again to see if they have gone back to normal. Hope you keep getting on ok with it x
Sue I recommend you run this query past the Thyroid UK forum. I'm not great at interpreting these tests but it looks like your antibodies are very high and whilst technically you are subclinical with thyroid levels (the T4 within range, TSH over), that doesn't mean it's OK and it doesn't mean you shouldn't deal with it. AF and are linked- hypothyroidism leads to higher cholesterol, higher BP, poor food absorption and these impact on digestive and heart health. You might have also low vitamin D, B12, Ferritin etc. Apparently these are important for optimal thyroid health. My Arrythmia nurse and EP encouraged me to get my hypothyroidism sorted. Like you, my T4 was in range (only just though) but my TSH was climbing up. I think your GPs rewponse is cautious but sensible. I'd ask them to be in touch with your EP or cardiologist to get a coordinated approach. That's what I did. I don't know anything about your heart meds so can't comment. Hope the rest helps.
Thank you - I have also posted on the Thyroid forum (most helpful). I only take the Amiodarone and Apixaban. I self converted from a period of 11 months in AF after taking Amiodarone for 5 weeks and have been in Sinus since January. No other issues and all other blood tests and ECG returned normal. Cholesterol is 4.2 total and cholesterol/HDL ratio is 1.6. It's the blood pressure I'm concerned about, although my GP has said to minter at home and discuss on next visit. I think the anxiety I'm feeling could well be linked to the thyroid. I will retest thyroid in 8 weeks and see what's occurring. It's all a minefield! Thanks again x
As you know Thyroid UK don't allow help with meds or even from experience.
From experience having had Thyroid Camcer and AF I thought I could help others but I could not reply just lookat these poor people with thyroid problems ask but not get any life experience from others.
Whereas this forum is open, educational, and experiences given.
Of course we are not doctors or specialists but we listen to our GPs and Specialists. Sometimes reserving the opportunity to ManageMyHealth.
How odd. When I joined 2 years ago I admit I wasn't impressed with some of the admin style. I did give feedback on leaving. But I rejoined in December 2022 and have found the forum very helpful. Including advice on optimal levels for blood tests and likely optimal doses of levothyroxine (in my case).according to guidelines on weight and age. I wonder if things changed recently? Sorry you had a bad experience.
I don't know whether being OUT OF UK another negative.
But all labs lining up to give the same 'normal' levels.
The USA guy GARY CLAYMORE or (TON) is the best and both my surgeon and I keep abreast with his opinions.
His book showing every operation in head and neck included mine the simple thyroidectomy but with 12 lymph nodes taken.
I have my adopted daughter turning 50 next month who since 4-5 years still putting off her thyroidectomy - removal taking the 38 cysts on her thyroid. But her TSH is 1.0.
I get doctor to write all over blood test that I have had a thyroidectomy so that total T4 being 24 (my highest) doesn't matter as I have popped another 25mg to get my !.0-2.0 level that I should be at.
Reading that an otherwise 'normal' person with a TSH higher than 4.2, should only be worried if it gains up to 1TSH10.0 and stays there for months and months.
I got headaches in the .7 level.
Anyway with 3 yearly clear cancer scans suppression is not on my radar.
"Not too low in normal and not too high in normal" TSH should be.
Also I tried fasting once - having the pill after the blood test. A little difference but not important.
I have underactive thyroid and have just been told to reduce my thyroxin drug levels as they too high. Seems amiodarone can make thyroid more or less active! My cardiologist said just to adjust thyroxin if amiodarone effected it. Now have the halo effect at night too, sigh.off to.opticians soon for check up of that...
Amiodarone caused thyroid issues for me after only couple months. I was probably predisposed as my mother has thyroid issues. Came off Amiodarone but thyroid issue permanent unfortunately and still trying to get levels right.
I was put on Amiodarone in ER in December, in February at the ER, it had tripled …to 12….no prior thyroid issues…this admission was because the Amio dropped my HR to 32……Amio was stopped in Feb and in April limit was down to 5. I am NOT a fan of this drug. Wishing you well, It was prescribed for me it’s a last resort Rx, as I had run out of successful options after 6 years of AF.
With a usual thyroid TSH of 1.9 - 2.0, after stroke in Sept 2019 Embolic (Ischaemic) with AF Rapid and Persistent, the thyroid cancer was diagnosed during a carotid artery scan.
TSH is important measure. It should be above 0.5 - 4.2. Yours in the 5.0 range is high. The USA Thyroid surgeon would say that sometimes it spikes due to an infection/virus making you hypothyroid. He would not suggest any thyroxin unless it carried on for months.
T4 free shows higher than 22 could be the fact that you have not fasted - with your AM dose.
A thyroid scan would be appropriate.
I do not or concern myself with T4 free as the 125mg (no thyroid) keeps me at a level of TSH 1.0 - 2.0. T3 3.9-4.0 and T4 free from 19-24.0. (Normal to 22.0).
I feel good.
Hyperthyroid is anything below TSH 0.5 (You are in suppression and toxic) To raise it you need to take less thyroxine.
Synthyroid I find is best. Expiry date, Kiddie Lock amd sealed 90 tabs, and condensation block inside. Its easy to keep to a level.
My thyroid globulin is 7.
Antibodies 34. (They dropped to 15 after Covid jab for a week. Then back to 34)
All other tests I have are in normal range.
What affects thyroid or parathyroid are all soy products, iodine, fluoride and chlorine in drinking water, licourice, oestrogen, cortisone injections.
I do without these items.
So take more thyroxine to lower TSH or less to allow it to rise.
Taking thyroxine for results no food just water 4 hours prior and no food 1 hour afterwards, no milk/iron for 4 hours post taking...
How do you feel.
cheri JOY. 74. (NZ)
I refused RAI post thyroidectomy and declined to be less than .5 suppression.
RAI kills cancer cells and can damage other organs. In suppression is not suitable for elderly and especially NOT with a heart condition. And experienced a stroke 2019 with AF.
I have had 3 yearly clear neck scans. Only 1 Aunty with thyroid problems - a goitre.
Thyroid problems can cause AF and other heart problems.
I know people that took that drug and was dizzy and just not felt well taking it! I would try something else! I took MULTAQ for two days and was feeling really dizzy and not good! I am just thinking maybe I WILL just live with AFIB without the medication because meds and I DO not get along well at all! Multaq is a cousin to Amidoerone the doctor said and that might be why I could not take it!
Back in 2003 after a 2nd cardioversion I was put on amioderone. I knew about the sun sensitive risks but after 12 months I suffered a serious weight loss in a very short period of time this was as a result of being on amioderone!!?
I was given Amiodarone in 2012. Before its start my thyroid parameters were normal. After one year treatment with Amiodarone when my TSH level was checked it was found to be 13.5 so far I remember. From that year 2013 I am still taking Thyroxine sodium tablets. I was off from Amiodarone in the year 2016. I also had some skin pigmentation problem during those Amiodarone years. Those had vanished.
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