Cardiomyopathy from t3?

[ChucklesWalrus]

I have been on thyroid replacement hormones for some time now. Maybe a couple years? I’ve started with dosages. I always got bloodwork at trough readings, and my free t3 would usually come back low. Because if this, my doctors always increased my dosage.

Eventually I worked myself up to 50/150 t3/T4 daily. Lately I’ve been having symptoms with it. Swelling in my ankles (edema, pitting) and fast heart rate. 90-105 even resting sometimes, which is very high for someone who regularly does cardio and trains 5x a week.

Obviously I got scared and cut back to 25mcg t3 and 150mcg t4. Still, symptoms. I have now cut out the T4 altogether and am just on 25mcg t3.

The ankle edema and fast heart rate are still there. As well as palpitations.

Has anyone experienced anything like this? I fear I have developed cardiomyopathy or something. I can’t get pumps and my appetite is terrible. Some fatigue as well.

I have gotten bloodwork and my liver, kidneys, and blood counts are all normal. Troponin levels normal. Chest x-ray showed it is normal size, no enlargement. I can still work out without getting too winded and perform cardio, but I breathe heavier than I use to. I am at a loss. I have a scheduled appointment with a cardiologist.

I feel like not much is discussed in terms of thyroid hormone here, and I fear I have damaged myself when simply trying to follow what bloods have reflected. The highest my free t3 was ever in bloodwork was 4.5.

[humanbean]

I feel like not much is discussed in terms of thyroid hormone here

I would disagree that not much is discussed about thyroid hormones here. But we do have lots of problems in the UK with respect to getting prescribed thyroid hormones.

British people have little or no power to make a doctor increase our doses of thyroid hormones when they don't want to. And getting prescribed T3 is so difficult that few people ever manage it. British doctors are trained to believe two things with respect to the thyroid :

1) TSH is a perfect indicator of correctness of thyroid hormone dose. All hail the mighty TSH!

2) T3 is addictive and dangerous, and is not an essential hormone. It's even been referred to as a waste product of T4, whereas out here in the real world T3 is the active hormone that every cell in the human body needs.

So, we discuss many of the things that affect the thyroid that we can control, such as nutrients and, to a lesser extent, diet.

Some of us buy thyroid hormones on the internet and control our own dosages.

...

In the context of being hypothyroid and taking thyroid hormones, a common cause of fast heart rate is low iron.

And I notice you haven't mentioned results for any nutrients.

The ones we mention mostly on the forum are :

Vitamin B12

Folate

Vitamin D

Ferritin (iron stores)

If ferritin turns out to be low or high then it can be very helpful to get an iron panel.

Some people benefit from testing and/or supplementing zinc and selenium, and in rare cases, copper.

Optimising basic nutrients makes a huge difference to quality of life if you can do it.

[ChucklesWalrus in reply to humanbean]

Hi! Sorry I meant to say “I feel like not much is discussed in relation to heart health and thyroid here”

Secondly, my TSH has been crushed for some time on my dosages with t3. However we kept increasing the dosage because my FT3 was low.

[humanbean in reply to ChucklesWalrus]

I meant to say “I feel like not much is discussed in relation to heart health and thyroid here”

That changes things. But if you do a search of the forum you will find many references to tachycardia (fast heart rate), atrial fibrillation, high (or occasionally low) blood pressure, hypertension (or hypotension possibly?), arrhythmia, palpitations, a few references to heart attack...

Do you know any of your nutrient levels?

[ChucklesWalrus in reply to humanbean]

Ferritin was low a while back, but my heart rate was normal then? It’s very new that it has risen. My blood pressure is normal as well.

[SlowDragon Administrator in reply to ChucklesWalrus]

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Day before test split T3 into 3 smaller doses and take last 1/3rd of daily dose approx 8-12 hours before test

Is this how you do your tests

Please add actual results and ranges and most recent vitamin D, folate, ferritin and B12 results

[ChucklesWalrus in reply to SlowDragon]

Hi. No I always took my t3 all in one side in the morning. So my bloods were always 24 hours after all my last medication dosing

[SlowDragon Administrator in reply to ChucklesWalrus]

I suspected as much ….So you would always get low Ft3 result

Last dose should be maximum of 12 hours before test

[ChucklesWalrus in reply to SlowDragon]

Wow. Crazy this isn’t widespread knowledge...

[SlowDragon Administrator in reply to ChucklesWalrus]

paulrobinsonthyroid.com/can...

thyroidpatients.ca/2020/07/...

[June25]

I got fast and irregular heartbeat (over 120) when I added 15mcg T3 to 88mcg T4. This is not such a large dose of thyroid hormone. My FT3 and FT4 were not remotely high. Like you, I got scared and I cut out all meds. After doing that my heartbeat returned to normal within 7 days.

Now that is what happened but it's more difficult to get an answer as to why. Pretty obvious that I overdosed, even though my dose would not on average be called excessive. Paul Robinson says in one of his blogs that for some people, increasing T3 means reducing T4, sometimes by a lot. I think that my T4 had either built up to toxic levels or had converted to RT3 also at toxic levels. The reason for this could be that my DIO1 gene has a mutation on both snps which when active might cause me to be a poor converter of T4 to T3, so my T4 had to go someplace else. Testing for RT3 could help diagnose this.

Bottom line, T4 can affect heart rate and rhythm. For some people T4 needs to be drastically reduced if using T3. Cutting out T4 will not have immediate effect because of the long half life of T4. You may have to cut out T3 as well until your heart settles down. Just my experience. Good that you are seeing a cardiologist.

[ChucklesWalrus in reply to June25]

I recently, just starting yesterday, cut out everything but 12.5mcg t3.

[tattybogle]

In case it is of any interest, the article for GP's in this post has plenty to say about thyroid hormones and the heart healthunlocked.com/thyroidu....

[ChucklesWalrus in reply to tattybogle]

Wow I fill all those. High systolic only, heart palps, high RHR, and the edema. I think I found the issue.

[tattybogle in reply to ChucklesWalrus]

glad it helped

[rubyred]

Hiya, I have graves. My thyroid was destroyed with RAI. I was very unwell on thyroxine and take just T3. I’ve been on T3 about 6 years maybe longer.

November 2020 I had 2 emergency admissions to hospital. Was diagnosed with persistent atrial fibrillation, dilated cardiomyopathy and severe heart failure.

Left hospital with heaps of pills. The endocrine wanted to put me back on thyroxine saying my heart issues had been caused by the T3. I refused and argued my case.

I was right to refuse, cardiologist felt that the AF had caused all other heart issues.

I’m now back in normal rhythm and my heart has returned to normal size and shape. My ejection fraction is now at 57%. During my cryoablation the cardiologist found that on my left side I only have one pulmonary vein. When there is just one it’s thicker and more fibrous and a person with one on the left side is more prone and likely to develop atrial fibrillation.

You mustn’t assume it’s the thyroid medication. Mine wasn’t even though the endocrine said it was

Good luck with your cardiologist appointment. 😊😘

[ChucklesWalrus in reply to rubyred]

Hey, so what was the cause for you? And thanks!

[rubyred in reply to ChucklesWalrus]

Hi the cause of my AF was having a single common pulmonary vein on my left side. Nothing to do with my T3.

[gabkad]

You need to have an echocardiogram and an EKG done. If you do not mention having had these done yet. From there they may require further tests to be done.