So I’m curious if anyone has had any success with selenium?
I met with my EP cardiologist on Thursday and I have also had numerous conversations with my Endo and we are trying to figure out my next steps. My body doesn’t appear to like Levothyroxine. The hormone aggravates my arrhythmia, I’ve had runs of NSVT since starting it and they do not believe it’s the inactives. My endo is concerned that even taking one of the other options will cause my arrhythmia to increase due to the nature of the medication. The issue is (of course) is the blood work shows that the Levo actually works for me. It dropped my TSH from 96.2 to 32 in a short period of time. We discussed taking a very tiny dose of the Synthroid by cutting a 25mg in half or using another brand that has a 13mg pill and seeing how that works out because as of last Sunday I’m taking nothing for the thyroid. A few things have been mentioned. We are still actively trying to figure out what would be the best treatment and how to go about it.
So I was wondering however if anyone has had success with selenium and zinc? I was thinking if I can lower the antibodies than maybe the TSH would follow? My ft4 and t3 still seem to be within “normal” lab limits so they are still working in some capacity. Obviously I’m just brain storming and trying to think outside the box. I am not well educated on thyroid that’s why I’m here learning and reading as much as I can. I do know the best treatment is the traditional medications and I’m not disagreeing with that I’m just trying to see if anyone has ever had luck outside of Levo or the others.
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Tiffw28
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I was thinking if I can lower the antibodies than maybe the TSH would follow?
No, that's not how it works.
I think first you have to understand what the antibodies are doing. TPO and Tg antibodies come along after an immune system attack on the thyroid, and clean up the traces of TPO and Tg that have leaked out into the blood. That would have no effect on the TSH.
The TSH is the chemical measure from the pituitary to the thyroid, to tell it when to make more hormone. When the pituitary senses that there isn't enough thyroid hormone in the blood, it increases it's output of TSH to stimulate the thyroid to make more hormone. When the thyroid hormone levels rise, the pituitary redcuces it's output of TSH.
Apart from that, TSH doesn't have any effect on you. It doesn't cause symptoms of any sort. So, the aim of thyroid hormone replacement is not to lower the TSH, but to increase the FT4 and/or the FT3. When they are high enough, the TSH will go down.
T3 is the active hormone, and is needed by every single cell in your body. And if there's not enough of it - or if there's to much - that's what causes symptoms. The heart needs a lot of T3, so it's not logical of your doctors to think that giving you T3 will make your heart worse - if anything, it could make it better. Maybe this article will explain that to them:
Hey! So thanks for the reply it was very helpful. I think the way I was looking at it was if the thyroid isn’t getting “beat up” then maybe it would make the thyroid calm down and everything would normalize. Definitely a simplification in my mind of what’s really going on. So if my ft4 and t3 are within normal lab limits why would my TSH be so high? I know lab limits are an average and everyone is a little different but I’m falling in the middle of “normal” for both.
I did mention taking the t3 instead of the Levo and for some reason she was worried that could ramp up my arrhythmia similarly to the Levo? She didn’t really explain why but said the mechanics are similar to have Levo works. All I know is I was left with the feeling that the Levo was “poison” for my body and I’m scared to get back on it. I have never felt so bad taking a medication ever. Within hours I was like what the heck did I take!?
I think the way I was looking at it was if the thyroid isn’t getting “beat up” then maybe it would make the thyroid calm down and everything would normalize.
I really don't think it's anything to do with the thyroid calming down. The thyroid has been damaged, and a lot of the cells are now dead. It is not capable of making hormone the way it used to. You will always be hypo from now on, and need thyroid hormone replacement of one sort or another. If you don't take it, the TSH will always be high. But that has nothing to do with anything physically. And, it's not the TPO/Tg antibodies 'beating up' your thyroid.
It might be a good idea if you actually posted your results - with ranges. I can't comment on your results without seeing them.
She didn’t really explain why but said the mechanics are similar to have Levo works.
She obviously doesn't kno why. She doesn't know much about thyroid at all. What mechanics? lol
would this sound weird if I said I swear the two weeks I tried the Levo my neck seemed to slim down a little bit?
Not at all weird, no. That's what's supposed to happen. The thyroid is swollen due to its efforts to make enough hormone. If you take that pressure off it by taking exogenous hormone, the thyroid swelling should go down.
There’s something sobering reading the words “You will always be hypo from now on” I guess I never looked at it that way before even though that’s the reality.
So Prior to starting The Synthroid on July 7th my last TSH on July 1st was 96.2 and my ft4 was 0.81
my new levels and ranges from July 21st.
TSH 32.50 range- 0.36-3.74
FT4 1.03 range-0.76-1.46
T3 total 124 range- 60-181
So my TSH went down and the T4 went up. The Levo works like it should but the issue is what it does to my heart rhythm. I just don’t know how we will get around that if all thyroid hormone drugs can cause issues. I looked up the literature for one of the T3 drugs and it had the same precautions as the T4 stuff. Sigh. I think that’s why my doctor is so confused as to what to do. I don’t get why this stuff impacts the heart the way it does especially since it’s only doing what the body should be doing- or atleast that’s how the drug was explained to me. I was also under the impression it would only cause issues with over treatment not treatment at all. What do they do for patients whose heart just can’t deal with these drugs?? I’m already on a high dose of beta blocker too. There seems to be no real answer from doctors for this.
Well, for a start, levo and T3 are not drugs. They are hormones. And, yes, they are only doing what the body should be doing - they are replacing the hormone that your thyroid can no-longer make enough of to keep you well, due to the damage done by the Hashi's.
As far as I know, they can only cause issues when taken in excess. But, for them to do their jobs, other things have to be sorted out first. Like nutrients. Sorry, I haven't followed your story, so don't know if you've already discussed this, but have you had your vit D, vit B12, folate and ferritin tested? Are they optimal? Or just in-range? How about cortisol? Have you had your cortisol tested? A 24 hour saliva cortisol test?
I doubt if you ever will get sensible answers from doctors, they just don't know enough about it. They get practically no training in thyroid in med school, and rely on myths and drug company reps for their information.
If levo really is bad for you - and could it not just be that you are so severely hypo at the moment that it is lack of hormone that's actually causing the problems? - then you should be allowed to try T3. Obviously, you would start with as low a dose as possible, and increase very, very slowly - either with levo or on its own. If they never let you try it, then you'll never know if it will help. And, given they they don't have any solutions to the problem themselves, it seems churlish to refuse. But, your cortisol and nutrients do need to be sorted first.
TSH 32.50 range- 0.36-3.74
FT4 1.03 range-0.76-1.46
T3 total 124 range- 60-181
Seems they can't even be trusted to do the right tests! The Total T3 gives you no useful information. That could be good, but the Free T3 - the form the body actually uses - could be low. So, you need to get them to test the FT3, not the TT3.
So I haven’t had my cortisol checked yet but I do have an order for it. As far as my iron, D, B... they are all average but not optimal. I’ve always been deficient but recently I was able to get them within the normal range (yay) and I’m still working on getting them higher.
I have asked her to do the Ft3 not the total. She says she prefers the total, but I plan on demanding it when I talk to her tomorrow. It’s really no skin off her back to order the lab so there should be no reason for her to fight me about it but we shall see.
It’s very frustrating these doctors don’t get it. If they don’t know they should be educating themselves. There really is no excuse. I’m sick of it.
Oh and let me ask would this sound weird if I said I swear the two weeks I tried the Levo my neck seemed to slim down a little bit? Normally I can really see and feel my thyroid and the nodule and I swear I don’t feel it as much as I normally do. Even my husband said it seemed smaller.....?? But I thought maybe it was all in my head! Lol.
I had an American friend who was given NDT first and it didn’t agree with her to the extent that she went onto Levothyroxine in the end. I don’t think NDT necessarily suits everyone.
It’s just a pity doctors aren’t more flexible in what they prescribe - like giving the patient whatever suits them best and keeps them well be it T4 / T3/ T3&4 or NDT. Unfortunately it doesn’t work that way.
I have high antibodies myself, my last test was 2720 which is ridiculous I never had it over a 1000 before. But I also felt fine even with my high TSH.
My TSH does not reflect how I feel if I am being honest. When it was 0.80 I felt dreadful but now it is 0.38 I feel well. I am not taking anything at the moment just the Betteryou vitamin D spray and I have recently added Folic Acid daily oral spray because my levels are low.
The nutrients most often tested and discussed on this forum are vitamin B12, vitamin D, folate, ferritin and iron. I looked through your previous posts and couldn't find results for any of these.
Perhaps optimising selenium might help you, and I'm not trying to discourage you from testing it. But it is already known on the forum that the nutrients I listed can have all sorts of effects on tolerance of thyroid hormones, so why not start with those? At least there is a lot of knowledge on the forum of what constitutes an optimal level, and how to supplement them to make them optimal.
I first started taking thyroid hormones about 7 years ago (I suspect I've been hypothyroid for decades) but couldn't tolerate Levo at all. I ended up taking T3 which I sourced myself. I've improved my levels of all the nutrients I mentioned and discovered a few months ago that I can now tolerate Levo after all. This makes my life so much easier that I have been breathing a huge sigh of relief whenever I think about it.
The biggest factors for me personally in tolerating thyroid hormones (in no particular order) are :
1) Supplementing magnesium, and sometimes sodium and potassium too. I'm extremely cautious with those last two.
2) Getting my ferritin and serum iron as close to optimal as I can manage
3) I've also discovered that if I binge on sugar and/or carbs I will have all sorts of problems with my heart speed and rhythm which then becomes an issue when I take my thyroid meds. I do my best to not binge but am not exactly strong-willed when it comes to carbs and sugar!
with regard to the cardiac side of things, I am just at the beginning of a similar story, in that even starting on 25mcg L4, provoked an intolerable level of ectopics which have caused minor heart enlargement. In my case PVCs.
I tried a betablocker ( a cardiac specific one called Nebivolol,) but it was not particularly effective when I tried to start thyroxine again.
So I am now on an antiarrhythmic called Flecanide...some people don't get on with it( mostly when on the higher doses for AFib), but I'm taking a small dose twice a day, and am slowly building up my thyroxine dose....so far so good.
Worth asking your cardiologist about if it could be suitable for you to trial.?
Like you, I am going to have to take thyroxine, so I've got to find a way to manage it!
Hey! So they mentioned taking it because of the NSVT but I also don’t know how I feel about an anti arrhythmic that’s comes with a host of other potential side effects. How have you felt on? Those meds really scare me. Do you get runs if PVCs as well? I didn’t realize excessive PVCs could enlarge the heart!
I was getting everything from runs of ectopics lasting for hours, to bigeminy, at no point while on thyroxine ,was I ectopic free for more than 5-10minutes!
I know what you mean about worry about multiplying side effects, but on the betablocker, my heart rate was 45-50, still some breakthrough ectopics, and my blood pressure dumped down to 100/60 at times....I couldn't function anything like normally, that was on a very low dose of Nebivolol (2.5mg twice daily), I couldn't tolerate any more.
On Flecanide, I started on 25 mg twice daily for a week, then 50 mg twice daily for a week, then started thyroxine at 25 mcg for a month...and I have now been on 50mcg thyroxine for 10 days....I have to say, I have had no discernable side effects from the flecanide that I can discern...and very few mild fluttery feeling ectopics.
I am not feeling that brilliant yet, but seeing as I started from a fT4 level of 10 (12-22 range),
I am nowhere near the dose of T4 I will need yet...BUT at least I am able to take some now!!.
I think the idea is that I should gradually wean myself off the flecanide when I feel able/am on a sufficient doe thyroxine, but its early days yet.
Wow. I’m so glad you found my post because honestly I thought I was going crazy. My cardio and endo didn't want to come right out and say it’s the medication but I know without a doubt it is. Prior to this I only had one run over a year ago and it looked completely different on my loop recorder. I’ve been upset for two weeks since my first run of NSVT which was about a week after starting Synthroid. I actually stopped it the Sunday before last because I had enough. We are trying to figure out what to do now because my TSH was ridiculously high (96.2) before I started the medication but did come down to around 32 after those two weeks.
Did your doctors seem concerned with all the PVCs you were having when on the medication? Did you have any runs of NSVT ( when pvcs all in a row with no normal beats in between) how did the Flecainide conversation come up? Sorry I’m asking so many questions you are the only person I’ve come across that actually has ventricular stuff not atrial issues.
I currently take 200mg of toprol XL which is a beta blocker. Mine however is split throughout the day. Which is a very unconventional way to take it but it works well for me. My BP gets pretty low because of it but it’s manageable. I’ve been on it for years. The only difference I noticed was once I started the synthroid it knocked my normal heart rate or 60/70s down to 50s. I personally think Levothyroxine is poison. I can’t believe there are only a handful of meds for something that impacts so many people especially when these meds cause heart issues.
As for as i'm aware, I had no ectopics of any kind before starting levthyroxine. They started approx 10 days after starting it at 50mcg once daily.
All my ectopics are ventricular, and luckily, I always had normal beats between each ectopic, so I think the cardio and endo weren't too concerned (I was!!) Apparently although it is more usual to have atrial issues, some people do have ventricular only...just one of those things.
My TSH was only 1 with my fT4 of 10, so I have now been diagnosed with central hypothyroidism, and will need to take some form of thyroxine...it may still remain to be seen which version.....I am hoping that once my thyroxine levels increase, the ectopics may cease.....happens sometimes I believe. I am also taking a good dose of magnesium, which I also believe has helped...but had to find one my gut would tolerate, as am coeliac too!.
I have a parallel professional job, so cardiologist was happy to explore and explain treatment options...essentially these were beta blockers and/or flecanide with ablation as a last resort if the site for ectopics could be located. My cardiac CT/echo/MRI were all normal despite a family history!.
I asked to try the flecanide as I semi-collapsed on the betablocker., and despite being 60, I still ride horses competitively, so need to be reasonably fit..I refuse to give in.!
I probably should add, that my heart rate tends to bradycardia (slow) not tachycardia, so possibly in my case the ectopics have lots of room to pop in between beats. At its worst my underlying HR was 35 with ectopics after every beat so the cardiac monitor I was hooked up to read it as 70..until you looked carefully at the trace.
Taking thyroxine may increase my resting heart rate from its original 55-60, and allow the ectopics less opportunity..I hope !!
Thanks for the reply. Yeah I don’t suffer from bradycardia mine was in the opposite direction but the beta blocker brought it all down. I’ve always had a mix of PVC and PACS - very far few and in between but over the past two years it has gotten worse. In March I had so many PACs it looked like Afib on my recorder. So needless to say I was shocked when I was having NSVT since that’s the opposite of the atrial stuff. My cardiac MRI last year was normal and my echos have always been as well but I’m having a repeat of the echo this week just to make sure since it’s been two years since my last one.
It’s interesting how Levo aggravates the heart as it does. I really want to know why but no one seems to have the answer. If we are taking a hormone pill that’s suppose to mimic what our body already does why does it act like this? I was told it only causes problems if you over treat but clearly that’s not the case. It’s so upsetting. I just wanted to take the pill and get this hypo right. I didn’t expect it to add to my issues.
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