Update. So I stopped taking Amiodarone last Tuesday as advised from Consultant .At same time Lowered my Armour dose from 3 3/4 grains ( 140mcg T4 approx & 35mcg of T3). to 3grains ( 114mcg T4 & 27mcg of T3). Tachycardia stopped, HR dropped from110 to low 80s over the week, symptoms of over treatment stopped a week later.
5 days after lowering Thyroid dose blood test taken result: TSH 0.02 (suppressed as normal) Ft4 26 ( range 12-21), Ft 3 not done.... NHS Sigh.
However Amiodarone has high iodine content so I will have excess Iodine in my system which I understand takes several months to flush out. Effects are lowering of thyroid hormone conversion (so Ft3 blood test result wouldve been helpful!! ) plus poorer uptake of thyroid hormonez in peripherals.
Current symptoms. Feel under treated: constipation, dry eyes, falling asleep, bloated.
I suspect I probably have a lower Ft3 than usual....
Not happy I was put on this drug post surgery. But looking to manage it's effects whilst excess iodine in systems
Feeling out of my depth so any advice /suggestions/support from you lovely people would be welcomed.
Thankyou. 😍
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waveylines
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Obviously this is a fast changing situation and a blood result after 5 days isn't going to truly reflect what is happening. For instance I doubt your FT4 would have changed much in that time but if you tested 6-8 weeks after the dose reduction it will show as lower.
Just to mention that you are now only 5 or so days after a dose reduction and it will take 2-4 weeks to really feel what that dose is doing for you. For now you are in an interim period of tissue level reduced thyroid hormone and that in itself can cause symptoms that are transient.
Could you stay at that dose for 6-8 weeks and then retest?
It's different with Amiodarone Jaydee as it actually inhibits T4 to T3 conversion plus uptake in peripheral. It stays in the body for months so thyroid hormones could carry on back stacking.. I think it's important to get more regular thyroid tests because now I'm not adding to the mix with more Amiodarone so hopefully the Ft4, level is no longer going up but it might. - I may not have peaked. Could do with the Ft 3 level because I may have to consider Liothyronine if it drops too low but Ft4 remains either going up or over range. .It's not a normal situation. Can't tell you how angry I feel about the situation I'm in & left to sort the mess created out. Especially as I queried taking it.
Guilt trip? U have to be joking!! So response from NHS App message sent to GP (only contactable this way & during working hours only) was to give no advice re thyroid results and management but receptionist will arrange a phone app. Nothing from receptionist so rang.... Eventually got receptionist she said doctor app in 2 weeks time with some unknown doctor! No advice, no nothing in the meantime. I did ask and what does doctor want me to do in the meantime? No advice and Apparantly she can't find out either.... Shoddy at very best.... Other words that I won't write. Seeing my Consultant surgeon next week for follow up to this op. He won't know either!
Awful, just awful, I'm so sorry. Usually with an over range result they are chomping at the bit to get the patients dose reduced (usually by too much). I've had a frenzied phone call same day of blood test before now when I tried intermittent fasting and my blood numbers went haywire.
I might be tempted to contact GP surgery again and stress the urgency of the situation and try for a phone appointment.
Do you have an Endo prescribing your NDT? Would they be able to help out and worth contacting?
Thank you Jaydee for your sympathy and kind words.
No not now. I was stable for years on my NDT and dose so was handed back to GP care. It's been fine same dose year on years with minor tweaks that I do myself for changes in weather.The Endo I saw has retired. Am resisting seeking his advice unless things don't settle. I've ordered a thyroid panel test..... Will do that soon. Then do them monthly.
No one can test peripheral levels. I'm going to find signs symptoms don't match thyroid blood levels. The question is, within reason do you ignore blood test levels and treat via signs symptoms and be aware that at some point conversion will increase. Or do you steadfastly stick to being in range but have significant Hypo symptoms & suffer. Not easy but I think that's what I'm up against. They are my options.
Yes that's true Jaydee but I also have to guestimate how much is not being converted and how much isn't getting to peripherals and try and work out when the iodine is starting to diminish and the effects are starting to wear off. Not easy.... Several moving targets. That's why I think I will need to do more regular blood tests than normal to try to gauge/track what's going on. And keep a symptom checker alongside pulse/temp. Although pulse isn't totally reliable as my heart is still healing/settling.
I don't think you should accept hypo symptoms and suffer because you want as smooth a path back to your normal NDT dose as soon as possible and persistent hypo symptoms can mess that about. Dose T3 on symptoms. It's only temporary.
waveylines I so admire your restraint throughout this worrying time. It must take a remarkably thick skin in the medical community to not respond to your requests for help. You seem to be doing a sterling job on your own behalf but a little help would go a long way. Best wishes to you.
Thankyou Tistapple. I feel I have little choice. GP Surgery isn't really functioning. I despair how they could just leave someone well over range with no advice for two weeks and then a phone app with someone who doesn't know my case. Waste of time. .I've decide to stop my thyroid meds for a few days to let the level drop down. Dr S taught me this many moons ago when in my haste to get well I over cooked myself. He was very understanding of it as I was scared of doing that and said I could ring him. I did. He reassured me. How times have changed......
If course it's a bit different this time around as it will be ongoing with conversion & uptake affected I'm in new territory.
I respond similar when I have a problem with my situation. Revert to the medication level I was last on (and on occasion miss a couple of doses) where I felt relatively stable but know I am still not right. “Better the devil you know”. Mine is only levo and it being a storage hormone I have not experienced the loss of a few days either way. It’s not just the situation we find ourselves in. That’s not the end of it. It’s the retesting and the decision making after things go wrong too but you are very experienced. Nevertheless rightly feeling pretty vulnerable at the moment.
I despair of what is happening with our NHS. I just can’t understand their prioritising. In fact its clearly missing, although I am sure they will protest that strongly.
Am not sure NHS staff would say it's fine now tbh. One renowned specialist told me the NHS isn't safe. Going on my treatment I'd say that's absolutely on the button.
All I can say is thank heavens for Dr S as he trained me well. Though drug induced reduced conversion and uptake is new grounds for me ie high iodine from that drug.... (I'd love a chat with him right now to get his views & advice with the famous blue twinkle in his eyes.... Sorely missed. ) I would've appreciated a bit of a back of by a skilled knowledgeable proffessional as am still recovering from my op. Not to be... Definately not on the NHS! Thank heavens for this forum. I'm grateful to all the kind and also knowledgeable people on here....and the kind words. Thank you all!!
Oh this really does beggar belief - I can't tell you how upset I feel for you when you've just had surgery and can't get to speak someone about your difficulties. I definitely agree with Dr S being sorely missed (I wonder how many others on this forum are feeling the same)! Hang in there waveylines we are all routing for you. Hugs and more Hugs xx
Thank you Delgor for your kind words and sympathy. I'm gutted tbh. How incredibly stupid of the doctors to put me on a red flagged drug for patients with hypothyroidism. And then not even monitor it's effect! Definately dunce cap and corner for them! I have my plan now. I think I have to strike middle ground, accept a bit over range thyroid hormones to offset the Hypo symptoms from less T3 getting into the cells. So that when Iodine levels finally drop (who knows when) I don't get a huge sudden surge of thyroid conversion and uptake. Can't think of another way.
I've discovered there's 75mg of Iodine in 200mg of Amiodarone. Max perday for patients is 400mcg approx. They did a loafing period. Week one 3xs daily (600mg of Iodine per day) ; weeks 2 2xs daily (400 mg of Iodine per day) & week 3 onward 1x daily (75mg daily). And on top another channel cancel blocker that slows T4 to T3 in the heart only (Apparantly) words fail me.....
GP rang, maybe they even thought a two week wait foe a phone call was daft. And wanted to refer to Endocrinology. Nope. Or ring them. Nope to that too. They are anti T3 & told her that and the last thing I need right now is a change in type of thyroid meds. She admitted I knew far more than her. She said they can't request Ft 3 or Ft4 on blood tests.... It's not allowed. Barking mad world. She agreed to testing every 6 weeks so I've decided to alternate, private test NHS one.... If I can get the Ft3 done. Or I won't bother. Or I find a private specialist who really is T3/NDT friendly who won't be obsessed with TSH!! Straw and haystack come to mind....
I find it amazing that you've come up with a plan when you must be feeling so anxious about the whole thing - well done you!
It's just a thought but as you are obviously known to your old endo who has retired and who had no problems in prescribing you NDT, could it possibly be worth an e-mail or letter to him asking for his advice as this isn't a straightforward situation. I can tell you that even if you began looking for a private endo again you would probably have to wait a couple of months for an appt. so it might be a good thing just to make some initial enquiries. Hopefully you won't need anyone as you certainly have a good plan but I think you are very brave to be going it alone and perhaps some extra reassurance from a specialist may help you even if it's temporary😅🤗
I'm not sure. I'm worried I'll be taken off Armour and I don't think my body can take a different thyroid product that is less effective thrown into the mix.I'm tempted but unsure....
Goodness, I definitely agree with you on that - I certainly wouldn't want to be changing the Armour when you've felt so good on it for so long but it was my understanding that your old endo was fine with it. My head was just jumping ahead a little - always be prepared is fast becoming a motto of mine. I do know that radd has Armour prescribed by a private endo - something to bear in mind perhaps.
Yes he was very supportive of Armour but he might have a rethink since heart op & the mess up since..... Might be wrong. Can't decide whether to make contact or not. His private webpage states in bold that he follows all the guidelines of the NHS...... Bit worried about what that might mean! 😬
oh crikey ☹️ As you know I went with a private endo on the TUK list who said he would prescribe Armour but then by the second zoom he changed his mind - if I ever go to see another private endo again I will definitely make sure it's someone who has been recommended on the forum. Sorry I haven't been of much help😢
You will be OK. You know how to do this. You are answering your own questions in the posts you are making here. It's just that you are nervous because of the operation and rightfully angered at the hopeless state of the NHS when you need them for some reassurance.
You were lucky to work with Dr S. I wish I had met him. But then I got to work with Dr Peatfield, albeit briefly as I only found him when he was in his 80's. He was so nice though and his secretary was so reassuring if you needed a shoulder. I don't think we will ever see the likes of these doctors again.
But Waveylines, you know you are better at healing yourself than them. I don't know why they insisted on Amiodarone when you have thyroid issues anyway, but then they don't take much notice of other departments or medications that clash.
The best way forward for now is to get a Health Unlocked test done and see where that T3 is sitting in relation to the T4. It sounds like you really are likely to need to add some T3 for now while this medication works it's way out. You might need to reduce the NDT even further if FT4 is stacking up unconverted, but if you have a supply of T3 you can compensate with it. Not perfect, but it's only for a while.
Monday will come soon enough. I posted one off Monday just gone. I received confirmation it had arrived today. So results will be imminent. Monitor my Health is very efficient. I just hate the way they present their results without a print facility.
If you want to use some T3 I suggest getting it from Roseway Labs in London. It's the fastest and most reliable way. You just have to pay £30 for a phone consultation with the prescribing pharmacist first. She's nice and very understanding. She wants to see some results, which you have.
Your case will be way above her knowledge, but she will listen and you are good at describing what's happened and what you need to try to resolve it until you can get back to your normal Armour dose. I don't think you would have a problem getting the script you need.
Thank u Fancypants. Great idea. 👍👏👏 I will see how I go and what the blood test says next week.... Don't want to complicate things if I can avoid it. It's going to be a best guess what dose to go back in with. I'm second day off thyroid meds, feel better.... Palpitations have stopped. Xx
I thought Amiodarone was supposed to make us more hypo. In your case it seems to have made you hyper. Very odd. You won't let them put you on those tablets again I am betting. What sort of time frame are you looking at for the drug to dissipate and disappear from your body?
I've gone hyper because it's back stacking Fancypants due to lower conversion rate and uptake.Iodine takes months to leave the body.... So I don't know how long it will take which doesn't fill me with joy.lol...
Thanks Slowdragon will order one. Vitamin levels been a while since tested. However I've had a full blood count, all looks good except MCHP slightly low, LFTs ALT 1, over range rest all well in range. Haemocrit slightly below range (but I've just had an op). No ferritin.
I do take Thorne's Basic B with Folate, I inject B12 twice daily and I know my vit D is 120, take maintenance dose of 1000 D3.Been very stable on that for a number of years.
I'm strictly GF.
Before Amiodarone thyroid blood test was TSH 0.02 (usual for me) Ft4 17 (12-21) Ft3 3.8 (range up to 5.8)
I was taking 3 3/4 grains of Armour Thyroid. Felt great. Apart from heart!
And my weight was finally getting back to within a normal range for height. .... Not dieting just naturally loosing slowly.
I’m so sorry to hear how you are feeling, just hope your operation will do you good. Just go with your gut….I know you will have researched everything possible! Regular blood tests are a good idea though, even if it is for your own planning of adjusting meds.
I’m sorry I can’t say anymore , you have been so helpful to me in the past, I just wanted you to know I am thinking of you….Sending you healing thoughts and loads of cwtchesX
It won't have stimulated my thyroid. What it does is lower conversion rate of T4 to T3 so back stacks in the system which is the reason for the high Ft4 level. . And it also lowers uptake of the thyroid hormones in the peripheral. Though my Ft3 wasn't done I'm expecting it to be on the lower side than normal. This is the second day off NDT and my heart rate has calmed down quite a bit. The question will be when I resume what dose level shall I start back in at..... To reduce back stacking. Or am I faced with periods of coming off NDT to allow the system to settle until the iodine works it way out of the system and normal cibversion/uptake resumes.
I am sorry you are going through all this. Especially when so settled previously with your NDT dose.
As you say Amiodarone induces hypo by inhibiting conversion and reducing T3. This risks elevating RT3 due to T4 build up and reduced clearance. Amiodarone also bonds to T3 receptors, inhibits entry into peripheral tissue and can directly affect a healthy thyroid gland through follicular cells destruction (remember this bit).
However because Amiodarone will supply 20–40 times as much as a normal daily iodine intake through what it contains and drug metabolism (deiodination) it can induce sudden onset hyperthyroidism or thyrotoxicosis in the presence of elevated or low thyroid antibodies (Hashi or Graves) because of the thyroid gland tissue.
I read the average half life of amiodarone is 40 days - 57 days. A healthy physiology will try maintaining normal thyroid function by initially raising TSH, then T4 and FT4 and naturally reducing FT3 as a safety measure. Because your FT4 labs predictably elevated, this would indicate a temporary increased secretion from your thyroid gland (assuming you didn’t increase your NDT).
The long half life means even after stopping Amiodarone it can take many months for thyroid hormone levels to steady and resume normal deiodinase behaviours. Medicating full thyroid hormone replacement alters TSH physiology but if taken appropriately (eg alleviates symptoms), deiodinase behaviours should be the same as for someone with a healthy gland.
I have no experience of Amiodarone and so this info is only what I read but as you can not know the repercussions until they act out and are evidenced by labs, I was just making you aware of every angle.
Your body will be low in FT3 but I personally would not be adding T3 meds at this stage as there is risk your body will not be able to utilise it correctly, and would stay with the NDT your body has previously responded positively to. Remember you likely already have raised RT3 so more susceptible to your body further misusing thyroid hormones. You also cannot be hyper in the true sense with elevated FT4 but low FT3, and you are hypo not just from low FT3 but excess FT4 which discourages thyroid hormones to work well through shut-down measures..
Symptoms/improvements might be hard to decipher after what you have been through so I would keep daily notes on how I’m feeling (physically & emotionally), temps & pulse (could be ironically interesting), and dose by regular labs until you have clearer insight and feel meds are performing better.
Your goal is to improve and normalise deiodinase behaviours and if you reduce/raise meds too quickly or too much, you risk impeding natural improvement. You want a slow, steady build to the correct levels and then in say 4-6 months time I would reassess situation and be more confident in raising meds to pre- Amiodarone levels without worry of further variations.
It could be a tough ride or things might improve quickly as you were so settled beforehand 🤞. At least it’s positive your poor heart has settled 😊
Hi, Radd, just seen your response. Sorry for slow reply. In the end I did 3 days no NDT. I went back in with one grain to start with. Not enough, I felt awful by the afternoon. Ended up taking a further quarter in the afternoon.. Next day I moved to 1 1/2 grains and have stuck with that. Massively lower than my normal dose.However every night fast heart rate has meant I have had to sit up in bed and distract myself. Coughing, deep breathing, cold water makes no difference. Palpitations are a poor guide as they iccue in hypothyroidism as well as Hyperthyroidism.
Last night I made a magnesium drink. I slept well (might because of exhaustion) woke to fast heart rate.
Kardia 6L reports consistant NSR which I'm delighted over. Heart rate back up in 90's. Full panel thyroid bloods done waiting for results.
Amiodarone's iodine half life in the body is any where between 15- 140 days. Then it takes up to a year for the excess iodine to fully clear from the body.
I don't have Hyperthyroidism, nor is Amiodarone creating it because after 20yrs on a full replacement thyroid hormone dose I very much doubt my thyroid has any capacity. I think the problems are all from back stacking from my NDT. In a normal functioning thyroid it alters it's production of thyroid hormones to match uptake and conversion to what is going on in the body..as a result of the Amiodarones iodine. I read it takes about a month for a functioning thyroid to adjust, this may not occur with people who have an underlying thyroid problem. Its not recommended for use with Hypothyroidism and that's why it's hard to find management info for Hypothyroid patients.
I read this from a useful management doc Helvella put up.
Effectively the Iodine is enforcing a lower metabolic rate that I will have to go with until the level of Iodine drops. Regular blood tests to check if thyroid hormones are dropping and then I will be able to start to increase.
Not happy....but I don't think I have much choice. Lol.
Well, you sound as if you have enough energy to think clearly and take care of yourself. Thank goodness you have good thyroid knowledge and I'm glad you have a plan to overcome this horrible experience.
Does helvellas document state if there's anyway of speeding up the excretion process?
There was something that can be administered but it was discovered to be dangerous.... Can't remember the details. Big fat no no! I shall just have to slog it out.
Still blessed with NSR.... that is a major miracle! Been worried high heart rate would undo the good work.
I feel the NHS should at least offer me regular full thyroid panels but know they only do full thyroid panels if you pay for them!!
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