NDT, bedtime. Heart ectopics. : Hi everyone, I... - Thyroid UK

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NDT, bedtime. Heart ectopics.

HypoGuy96 profile image
18 Replies

Hi everyone,

I was wondering if anyone in here with Hashimoto’s has been dealing with heart ectopics?

I’m been trying to get rid of them for many years. 6 months ago, I started taking NDT instead of Euthyrox and after three days the ectopics almost disappeared.

But! Now they have returned after almost 6 months of being on 60mg of NDT.

I’ve started to take 60mg thyroid before bedtime, 30mg in the morning and 30 again in the afternoon.

Have anyone had the same experience as me and what did u do? Pls. Let me know!

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HypoGuy96 profile image
HypoGuy96
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SlowDragon profile image
SlowDragonAdministrator

Have you been assed for Mitral Valve Prolapse

MVP and Hashimoto’s often linked

pubmed.ncbi.nlm.nih.gov/105...

MVP is considered autoimmune disease

MVP apparently increases risk of ectopic heart beats

Do you wear watch with ECG recording option

Gather up data and request referral

I have MVP and Hashimoto’s. I find Ectopics seem more frequent when not on high enough replacement thyroid hormones.

HypoGuy96 profile image
HypoGuy96 in reply to SlowDragon

No heart issues. Have been checked several times.

Getting my blood work done today to see how it all looks.

Are u on NDT yourself?

Hashihouseman profile image
Hashihouseman in reply to HypoGuy96

NDT is not a physiologically normal balance of T4 and T3, I would suspect that being an issue depending what your blood fT4:fT3 is? Whatever your current exogenous hormone replacement it is your endogenous levels as shown by symptoms and blood test for fT3 fT4 and TSH that should indicate , in comparison with healthy normal levels, whether you need to change your replacement regime……

greygoose profile image
greygoose

When hypo symptoms return like that, it usually means it's time to increase your dose. 60 mg is only a small dose.

HypoGuy96 profile image
HypoGuy96 in reply to greygoose

Hey,

How do you take your NDT dosage. Morning, night etc?

greygoose profile image
greygoose in reply to HypoGuy96

I don't take NDT. I take T3 mono-therapy, 75 mcg, all in one go when I get up in the morning.

Hashihouseman profile image
Hashihouseman in reply to greygoose

Dose is all relative to the individuals thyroid status and set points, small medium large adjectives are a bit meaningless without the data……

greygoose profile image
greygoose in reply to Hashihouseman

That's as maybe but if the person is still having symptoms then I would conclude that their dose is too SMALL for them. I find your comment a bit meaningless, too.

jgelliss profile image
jgelliss in reply to greygoose

👏👏👏👏

lisabax profile image
lisabax

This happens to me. I’m on NDT and it usually means I’m under medicated or under stress. I find it goes on its own when stress resolves. I haven’t increased dose, but shifted my afternoon dose a little later. Have talked to cardiologist who told me ectopics are nothing to worry about, but they certainly make getting to sleep difficult!

Hashihouseman profile image
Hashihouseman

I had no heart issues before being treated for hypothyroidism.

After less than good reactions to levothyroxine i used NDT and then liothyronine plus levothyroxine - but getting those dose right was fraught with ups and downs, especially in my heart RATE, I put this down to being over -medicated not a problem with T3 itself

After pressure from the endocrinologist and lack of support in blood testing necessary for establishing a T3+T4 dose I went to T4 levothyroxine only….. Yes it’s easier to manage but is it better? And more importantly is it safe?

There is a bit of a myth that T4 is safer than T3 but that comes form the risks of overdosing on T3 , which could be said to be easier to do because it is so potent and the dose response is significantly more rapid and profound than T4. However….. T4 is an insidious thing, in that overdosing can creep up on you and takes weeks if not months to stabilise. Not only that T4 only regimes do not allow micro adjustments day by day according to fluctuating needs So what does this all have to do with heart rate, myocardial health, ectopics and fibrillation (AFib)…..

Well, after 2 years on T4 only and having to push T4 to the max, sometimes over, to get normal healthy levels of fT3 and symptom relief, not only was I getting chronic and occasionally acute BRADYCARDIA (sometimes lower than 40 bpm resting pulse) I suddenly started to have palpitations and on ECG for the first time ever, appearance of ectopics and what my Apple Watch repeatedly warned was atrial fibrillation ! So I dived into related research and found evidence that excess fT4 not fT3 nor TSH was associated with increased risk of AFib, good evidence! Plus my own experience of course. Here’s the main piece of evidence…

Free thyroxine within the normal reference range predicts risk of atrial fibrillation; Jeffrey L. Anderson et al

Essentially, this huge observational study showed a near doubling of risk of AFib when blood levels of fT4 were not just over the lab range but significantly higher at anything over the median level, so the upper quartile lab ranges of fT4 are a significant risk of cardio myopathy! There was no association with TSH or fT3 seen in this study . I also discovered that the myocardium, the super special heart muscle has a strong expression of DI02 suggesting its sensitivity to fT4 plus the known effect of hypothyroid state (low fT3) on slowing heart rate - which all to my mind shows significant potential for thyroid anomalies to stress the myocardium and potentially cause long term damage, if not just AFib and random ectopics (since ectopics are apparently a sign of myocardial stress among other things….).

Given my sudden onset of cardiological issues and the substantial research finding I dropped my T4 dose and added very small amount of T3 to compensate for the reduction of fT3 I knew would occur from getting my fT4 to the median or normal healthy level. So far, I have managed to reduce fT4 from 20-22 to 18 and I want to go lower, this has taken the addition of 5-7mcg T3 to keep my fT3 around 4.5; it goes to 3.5 if I reduce fT4 to these levels without supplemental T3. Also for the first time my TSH is now normal at around 1 - 1.5 and my residual hypothyroid signs and symptoms are much less than on T4 only. The trick, for me at least is to take multiple small doses of T3 with the T4 in physiologically normal amounts and, as the heathy thyroid produces 20% of the total T3, that’s what I am dosing (5-7mcg) . i also read that thyroidal response to rising TSH is firstly an increase in T3 secretion then T4, as if T3 is like some kind of spark plug for T4 metabolism to work smoothly…. Well that’s my latest theory :)

And what about my palpitations and signs of new onset ? 2 months into reduced fT4 plus physiologically sufficient T3 these seem to be resolved, fingers crossed, because I do not want crap thyroid replacement advocated by ignorant clinicians to mess with my heart because that will kill me quicker than being hypothyroid!

overunbykids profile image
overunbykids

Yes, I am on medication as my ectopic beats got so bad, I was having them every 5-10 heartbeats. Funnily enough, I didn't get them on NDT, but since Thiroyd was taken off the market, I have had no other option but switch back to Thyroxine, and now Thyroxin/Liothyronin combo treatment. I had a total Thyroidectomy in May and the ectopic beats have been worse since that.

waveylines profile image
waveylines in reply to overunbykids

I think the answer lies in the fact that NDT has a slower uptake/ fall with the T3 element so is more gentle..but doesn't work for all. I've always felt even on NDT but never did on levo/, Liothyronine. My Endo always said if I kept my thyroid hormones in range no harm should be done to my heart. Over the years I've tried to keep to that rule.

Unfortunately I had to go though, successfully, the full works for bc treatment. This triggered rapid heart rate and ultimately Afib. Not to do with my thyroid meds but due to cardiotoxicity. For years the medical profession didn't believe in cardiotoxicity but now they do. It's a killer. Much researchs is ongoing. I've just undergone a heart op to correct the signalling mechanism which remains haywire 9yrs post treatment & is causing problems consequently. Time will tell if it works.

I'm saying this because I think much is still not known and the heart can be affected by far more than thyroid levels. It's a new area and frankly any treatment for Afib is rather crude. Much of this chemical treatment involves inhibiting thyroid hormone use by lowering conversion rates... Not great if you have hyoithyroidism.

These days the obsession with TSH and keeping people essentially under medicated does not explore the impact on the cardiovascular system long termly of this approach. I'm sure under is as bad as over treatment. And there in lies the rub.... The fine tuning that a normal functioning thyroid can do hourly, minute by minute isn't something yet achievable biochemically. If you like thyroid replacement is rather crude in comparison. It's why I believe the whole picture not just blood test results should be taken into account. Unfortunately though doctors these days think it is as simple as popping a pill. It's not.

Is there a simple answer to this conundrum? No. You'd need someone to devise a mechanism that can accurately sense the optimum levels for each person minute by minute, according to their activity, well being etc, releasing converting thyroid hormones as required at just the right level. I think we are a very long way of anything like that.

However the risks without treatment at all far outweigh any treatment however crude it is. The treatment isn't perfect but many people do do well once they find the optimum levels for then and address Co factors. Does it inevitable lead to heart problems? Well for some yes but how much is due to over and under or late treatment remains unanswered. Research isn't there except to back big pharma. And the professional bodies are arguing increasingly for mono therapy and have become dis-engaged from actual patients.

This leaves most patients either doing well on what there is on offer (limited) or being forced into finding their own way. It's a shame that researchers don't find more interest in what this smaller number of patients are forced into doing....because the standard treatment of one size fits all doesn't work for all. Not does this standard treatment fir with the fine intricacies of a functioning thyroid.... So logically why medical experts think it does is a mystery to me.

meme profile image
meme in reply to overunbykids

Are your iron levels good ? Magnesium ?

I have ectopics. I have had them for over 30 years. I saw an Endo who switched me from NDT to t3/4 combo earlier this year to try and help with them. I did not do very well on the combo, especially when he reduced the t3 by a third. The ectopics became worse. I went back on NDT trying Thyroid S this time. Not finished my first 500 pot yet. I feel much better on it. Ectopics intermittent and can be very bad some days. Stress plays a big part. I can calm them with meditation, especially helpful at bedtime. And it works for a while during the day.

I recently agreed to an ablation and await a date for the procedure .

jgelliss profile image
jgelliss

My sympathy for you. I experienced palpitations after my TT when I was dosed on high T4 . Interestingly enough on NDT at first felt well. With time I didn't feel as well. Dosing with T4 and and adding some T3 was a big game changer for me. The T4 and T3 can be tweaked as needed. NDT I found was a bit more difficult for me to adjust the T3 .The heart needs T3 as does all the muscles. I don't convert my T4 well to T3. In addition please checkout your nutrients. Iron ,Ferritin, B-12/folate, vitamin D ,Zinc, magnesium.

Wishing you fast resolutions.

HypoGuy96 profile image
HypoGuy96 in reply to jgelliss

Thx for your reply♥️

Have u had experience with night time/before bed dosing and waking up swollen around your eyes, cheeks etc?

jgelliss profile image
jgelliss in reply to HypoGuy96

I do night dosing and it seems to be working for me. It might just be that some nutrients can help you. Just be mindful that some nutrients need to be spaced 2-4 hours away from the thyroid meds.Best wishes for your Optimal.

Bob00752 profile image
Bob00752

Hi HypoGuy96. I certainly get variable heart rates and I'm sure anything over 160 recorded by my smartwatch is it doubling a heartbeat due to irregularities. Might be ectopic. I was once taken to hospital after fainting in a long supermarket queue, given an ECG in the ambulance and told by the paramedic that I had a type 1 heart block - the heart should go "lump-dump, pause" and then repeat and the 2nd part of the heart beat ("dump") lagged further than normal from the first. Everything was OK by the time I got to hospital and when the GP later repeated an ECG a week or two afterwards. The official hospital NHS diagnosis was Vascular Syncope (which is NHS for fainting!)

When my levothyroxine (T4) was increased from 75 to 100 mcg per day. My GP asked for a repeat TSH test and checked my heart rate when he confirmed the dose was OK. His concern was that my heart rate would increase of I was overdosed on T4. For the record my heart was 52 bpm under the stress of a GP interview and I did jokingly observe "so no white coat syndrome today" which got a laugh and an "apparently not" reply!

So my heart rate over the last week averaged 73 bpm with a minimum of 40 and a max of 138 (according to a cheap smartwatch so maybe not that reliable...). I seems to spend the first 7 hours of each day at around 40-45 bpm while I'm asleep. 15 - 25 years ago it was often low 30s when manually taken while trying to get to sleep but then I was on beta blockers (I've been on ace inhibitors and calcium channel blockers since then).

High readings are usually when out walking, especially when climbing a hill with nordic poles. Sort of what you expect.

I can't comment on the effect of T3 in contrast to T4, so take note of those that do have experience of this alternative medication. Hope something of the above is of use to you though.

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