Hello everyone, I'm stuck between a rock and a hard place at the minute and I don't really know what to do for the best. Hence, I am looking for some help and advice. Reason for my demise, amongst other things, is the following test results which was done via Medichecks. Levo dosage was 50mcg levo on alternative days. Been on this dose for eight weeks now. Two previous test results were over range, hence the decrease of levo. Here are my results which are not looking good.12 October 23
TSH.........11.9.......0.27-4.2
Free T3....3.5........3.1- 6.8
T4.............12.........12-22
Incidentally, I had a thyroidectomy 1992. There is more to this story but don't want to get into that. Really would appreciate some help/advice as to what increase of levo and t3 I should make to improve these awful thyroid numbers? Should I do slow increase or just jump right in the deep end and up dose to time period when my results were ok? For example:
7 April 23
TSH............0.86.......0.27 - 4-2
FreeT3......4.98.......3.1 - 6.8
T4................17.8.......12-22
At this time levo dosage was 75/50mcg alternative days. Plus 30mg NDT (half grain daily).
What do you guys and gals think I should do?
Thank you in advance for taking the time to read this post.
Have a rewarding evening
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DizzyD
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I see from a previous post that you are on a medication that can affect your thyroid results - Amariodone. I think waveylines might be on this medication too and struggling with levels.
Clearly you need more thyroid hormone so if you have recently been alternating 50mcgs then 25/50mcgs alternating is the next step.
What supplements are you taking?
What are your most receent vitamin results?
As you have been quite hypo recently its all the more important to optimise vitamin levels.
Thanks Jaydee. I have indeed been on Amiodatone and thankfully off it after a month. Dizzy latest thyroid tests now show high TSH &, low thyroid hormones so she needs to resume increasing her thyroid hormones back. .
Amiodarone causes reduced conversion of T4 to T3 and in addition lower peripheral uptake. I concluded for myself that the combination of these two factors when on thyroid hormone replacement that thyroid hormobes could back stack. Amiodarone has a very long half life anywhere between 15 to 142days. Truly scary.
I had symptoms of over treatment so I lowered my thyroid hormone dose and my heart rate reduced into normal range. After four days I felt Hypothyroid, bloated swollen tummy, dry eyes, feeling cold and very tired. Unfortunately labs didn't do my thyroid levels as requested for some reason, can't chase this till Monday. Just hope they still have the blood sample! So I've had to guesstimate what to do, decided to increase but still a little bit less than my normal dose. I feel better.
So yes anyone taking Amiodarone especially with Hypothyroidism should be very careful. Generally contra indicated with Hypothyroidism but can be prescribed in certain circumstances.
Dizzy & I are in contact as we both go through sorting the aftermath out! But I decided to post incase anyone else is also struggling.
However anyone with a heart condition should be made aware that many heart drugs work by lowering thyroid hormone conversion rates, some are worse than others.
Thank you slow Dragon. Yep! 50mcg levo every other day as instructed by endocrinologist!!! Incidentally my follow up appointment with endocrinologist is in a year's time despite her saying during consult/reduction "We will retest in 6 weeks". Thank God for Medichecks.
Hi Slow Dragon, it was NHS consult...first one in over 3 years. I In liverpool. Will look for Private endo. Sincere thanks for link. Will increase to 50mcg daily
Your dose of Levo is ridiculously low for someone without a thyroid. I would have thought that you would feel better with more T4 and possibly some T3, although I can't say how much you might get offered, or what you might tolerate.
Why was your dose reduced following your April results? Neither your T3 or your T4 are high enough for good health in people with thyroid disease.
I think you might want to increase your dose quite rapidly, rather than inch upwards. Since you had your thyroidectomy in 1992 you must have years of experience of how you react to Levo, T3, and NDT.
Since you are taking Amiodarone, have you seen the interaction list for it from NICE?
You can find it here - and I have never seen an interaction list that long before :
It shows that there are far more drugs available to treat arrhythmias than just Amiodarone. I don't know how doctors choose one drug over another for arrhythmia but I would guess that price comes into it somewhere.
It's not price Humanbean. It's the fact that Amiodarone is the most effective at controlling Arythmias. It is regarded as a last resort drug because it comes with a whole host of possible nasty effects on the body's organs. In our case it's used post a heart operation called mini-maze to resolve Atrial Fibulation. Personally I was dreading taking it....&, hoped another drug would be used. Should've been 6 weeks but after 4 weeks my HR was increasing to tachycardia levels. Glad to be told I could stop it! Now HR has dropped into normal range...but still too high for my liking . Am hoping it will continue to go down.
Thanks Humanbean. I'm skeptical of what medics say too. However when I looked Amiodarone it is the best at controlling Afib but with serious downsides. Unlike other simular heart drugs it has an extraordinary long half life that also left me nervous. Thankfully I remain in NSR since stopping it. Long may that continue! I feel better and hoping I can continue to gradually build up my activity levels.
Hi waveylines, humanbean sent me a link somewhere below about Amoidarone. BMJ article...I just off to read it. Lol not that it will make much sense to me.
Yes.... It's the high Iodine content.....you still need thyroid hormones with or without a thyroid! What did he think you were running on then? Fresh air? 😯🤣 I think it's a question of not knowing outside your area...I was not warned & I do have a thyroid, albeit probably not functioning! .
The expression only an ass assumes comes to mind. Kicking myself....like an ass Lol 🙄🙄 Serves me right.
Hi humanbean thank you for your most welcome reply. Please bear with me. April results show my thyroid levels prior to being prescribed Amiodarone on 17 April. At that time levo dosage was 75/50mcg on alternate days. In addition I also took half grain NDT (30mg) daily.
I was relatively ok with April results, aware that T3 could be improved with a bit more NDT but I didn't want push it any further due fear of AFib episodes.
14 April was admitted to a+e with AFib. A+e cardiologist offered Flecainide which I refused due to the fact I was told by two previous cardiologists that this medication could not be prescribed because I had a blocked artery. Long story but I was coerced into taking Flecainide by a+e cardiologist. 2 days later rushed back to hospital with most horrendous AFib ever. Literally, I could have died. I am 72 and my heart rate was in peak cardio mode, 210 bpm at highest, continually for over two hours. Troponin level reached 85. The entire AFib event lasted 18 hours. Was in ACU for 3 days. Flecainide caused this horrendous AFib attack. Consequently, was prescribed Amiodarone. Was told this medication would be okay to take because I did not have a thyroid?????
Anyway, 2 months after being prescribed Amiodarone (June) thyroid test revealed T4 was over range. Hence, levo was reduced to 50mcg daily. Retest in August T4 still over range so further levo reduction: 50mcg every other day. In addition I stopped taking the Amiodarone at same time as levo reduction which my endocrinologist was aware of. Hence, the awful thyroid test result in my initial post above. My follow up appointment with endo is August next year.
Have to live in the solution now humanism and get thyroid dose sorted. I agree with you that I need to increase my dose quite rapidly....over the past few days I been totally burnt out and can barely function.
Due to the iodine content which remains in the body (half life) not sure how this will interfere with conversion of hormones though.
Personally, seeing my levels are so low, I prefer switching fully to NDT. What do you think humanbean?
My follow up appointment with endo is August next year.
WHAT!!! I knew the NHS was struggling but having to wait nearly a year for a follow-up appointment for a heart problem sounds like cruelty and neglect to me.
A+e cardiologist offered Flecainide which I refused due to the fact I was told by two previous cardiologists that this medication could not be prescribed because I had a blocked artery.
Is the blocked artery one of the cardiac arteries? I thought that angiograms and stents could be used to fix those? But then I'm probably just exposing my ignorance about this subject. I just found this article which doesn't surprise me at all :
Consequently, was prescribed Amiodarone. Was told this medication would be okay to take because I did not have a thyroid?????
I am struggling to understand the logic of that, and I can't say if it makes sense to me or not.
.
I wondered if this might be of interest - I don't know if it will be of any use. I couldn't find any links detailing the effects of "amiodarone without a thyroid" or "amiodarone after thyroidectomy".
Title : Amiodarone and the thyroid: a practical guide to the management of thyroid dysfunction induced by amiodarone therapy
I've never had the problems you have, but I did have tachycardia of HR up to 160. I managed to improve this when I worked on improving my iron and ferritin levels.
I've also managed to quieten things down with potassium supplements (specifically potassium bicarbonate in powder/granule form) - it has reduced my high(ish) blood pressure and the tachycardia.
Yes humanbean, I had a blocked cardiac artery, which the a+e cardiologist was aware of. Flecainide cannot be prescribed for people with this condition until extent of blockage is checked out. Told the a+e cardiologist that my usual cardiologist had arranged for testing to see extent of blockage with a view to being prescribed Flecainide. She stonewalled me...dogmatic in her approach, got really annoyed with me. She worn me down so I took the Flecainide and eventually ended up on most toxic drug on the market (Amiodarone) due to her blunder. I have had a stent fitted since then which means I am now a suitable candidate for Flecainide to treat afib. Ohh but there is a catch and perhaps a cover up here!! After my severe AFib attack and being wrongly presribed Flecainide, and eventual discharge from ACU and sent home with Amiodarone, my discharge report states that I am allergic to Flecainide so can't be given it anymore. Really!! No mention of the fact that medical negligence caused horrendous AFib attack...I not allergic to Flecainide that's a cover up. I should never have been prescribed it until extent of blockage was determined.
Re: doctor saying Amiodarone was safe for me to take because I had no thyroid. I had little knowledge about this drug, doc was talking me through side effect list just before discharge. I perked up when he got onto thyroid side effects. He was talking about side effects to thyroid gland. When he finished I said, "Well I don't have a thyroid" He replied, "Ohh that's good so this won't apply to you then". That was it.
Got home, researched this drug and found out that it was toxic due to high iodine content. The word IODINE set off warning bells. Posted on here re: iodine. Tattybogle and Hellava replied: brilliant info.
What the doctor did not mention due to ignorance or whatever, was that Amiodarone due to high iodine content, plays havoc with conversion of thyroid hormones.
Hi Humanbean I've read the interesting paper on the management of thyroid on Amiodarone. Interesting. Thank u!
I was wondering if NDT poses a problem then by the T3 content as it recommended T4 only. I'm confused by this as surely you need to add T3 in because of the inhibiting effect of the iodine on conversion and reduced uptake of T3. Have I mis read? Sadly it doesn't talk about the management of pre existing Hypothyroidism on Amiodarone treatment.
I'm hoping my 4 weeks on it might mean I will fare better.....🤞🤞🤞
Dizzy what were your thyroid levels before Amiodorane?If you weren't on NDT before I'd be inclined to settle yourself with your previous thyroid meds. Were you on Liothyronine as well?
I'm saying this because your body had had a huge shock and needs time to recover. I personally wouldn't add in a change at the moment. Get sorted with levothyroxine, add in Liothyronine if needed and if none of that works I would consider NDT.
I say this because the ratio of T4 to T3 content in NDT does not suit everyone. Some people find the T3 content too high, so have to trial a mix of levo/NDT.
For the reasons above if it were me I would say it's too soon to be thinking of switching.
Hi there, see my initial post above re: thyroid levels and thyroid meds before Amiodarone. Note: was on a mix of levo and NDT...Ohh those were the happy days!
Definately get rid of the Endo. What a terrible way to treat you. To tell you to drop to 50mcg alternates days for 6weeks was bonkers. And then give you an app in August.... When you don't have a thyroid is negligence surely!! Research carefully the next one.... So many are diabetes specialists and then fair few are anti any T3 treatment.I've decided to self manage mine. I have a very poor view of Endos am afraid. I did self manage my thyroid hormones off grid for three years... Only came back into the NHS so I don't have to buy my thyroid meds.
Thanks waveylines defo agree: most endos are a waste of time. Like yourself, I self managed my thyroid issue with help and support from this forum for over 3 years. I am looking for a private endo only to see if they can help with my adrenal problem...am quite desperate. I could be grasping at straws though...adrenals might improve when thyroid levels improve which could take quite sometime. How on earth does one find a reputable endocrinologist? I have got one in mind and I intend to check him out via initial consult. Aim to pick his brain re:Amiodarone messed up thyroid results and how to improve them. Bet he has no in-depth knowledge about Amiodarone though apart from the fact that the drug messes up thyroid levels.
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