My heart isn't happy on levo... anyone else?

[KJVW]

Hi All, I'm struggling to find anyone else having palpitations and ectopic beats etc etc etc on levo. Just wondering if anyone else is having these problems and if you tried switching to NDT or took beta blockers?

Bit of background... copied and pasted from another thread

I was diagnosed with Graves' disease early in 2017 when I came down with flu and had a raft of blood tests in A&E. My TSH was undetectable and my T4 and T3 were only slightly above the normal range but I was extremely symptomatic (tremors, rake thin, tachycardic, hypertensive, sweating etc etc). My endo started me on a really low dose of carbimazole and every time my T4/T3 came into the normal range he immediately dropped the dose. I have since read the guidelines and I now know that was the wrong thing to do. The result was 6 months of constant hyperthyroidism and lots of hospital admissions, I was eventually told to get rid of my thyroid and I gladly agreed, hoping to end the misery. In my endo's defence, I don't think he's ever treated anyone so sensitive to thyroid hormones, I reacted violently to a T4 of just 24 (12-19 normal range).

My thyroid levels have gradually improved over the couple of months since the surgery, I was overtly hypothyroid at the time of surgery to prevent thyroid storm (T4 was 8). My levo dose has been increased from 75mcg per day to 100mcg 3 days a week and 75mcg 4 days a week, he's just increased it again to add another day at 100mcg based on these levels:

TSH 3.8

T4 14 (12-19)

T3 3.7 (2.6-6)

Not great but I don't actually feel that tired, the problem I am having is that levo seems to be giving me heart problems, I am plagued with ectopic beats, tachycardia and sometimes full blown palpitations. I'm also hypertensive (140/90, pretty rubbish for a 50kg woman in her 30s). The palps and ectopics are always worse in the few hours after I take the levo. The endo rolls his eyes and tells me this is all in my head, which makes me feel pretty desperate as I cannot maintain any quality of life like this. I wondered if something like NDT would give me less heart grief, my endo won't prescribe tertroxin because he thinks my heart can't take neat T3... despite the heart issues being all in my head!!!

Any advice or anecdotes are very welcome at this stage, I'm feeling pretty hacked off at the dramatic decline in my quality of life.

[Marz]

Have you had B12 - Folate - Ferritin - VitD tested - ? Low levels can affect the heart - especially is you have anaemia Sadly none of the Thyroid choices work well if the afore-mentioned are low in range ....

[KJVW in reply to Marz]

I haven't had folate or B12 tested, my ferritin is 18 (15-200) so perhaps I need to work on that. My vitamin D is 109 (50-140). I'll ask for the other tests. Is it just iron supplements to increase ferritin?

[greygoose in reply to KJVW]

Your ferritin is so low, you ought to get your endo/GP to do a full iron panel. And that could be what's causing your problems.

[KJVW in reply to greygoose]

I did have a full panel, ferritin was the only thing that was low in range although the endo felt it was fine. I'll pick up some ferrograd from the chemist

[Marz in reply to KJVW]

When greygoose mentioned the full panel - she meant the full iron panel which is nothing to do with Ferritin. Ferritin is not included in a Full Blood Count or FBC. It is about the Serum iron - circulating and its binding capacity. Your Ferritin - stored iron in the liver - needs to be around 70/80 so you have a way to go. This is a figure mentioned by many experienced people on this forum and is a patient to patient suggestion in order that thyroid hormones work well in the body. Not something your GP would be aware of. Of late we have seen so many posts where the Vitamins and Minerals are dire - and GP's declaring them fine. Sadly no training at Med School - just conditions that are solved with drugs.

Some iron supplements are stronger than others - sorry I am not able to advise - but Ferrous Fumerate seems to be mentioned here quite often - taken more than once a day with VitC to aid absorption.

Oxygen is transported around the body clinging to iron in the red blood cells. When iron is low then so is the oxygen. The heart senses this and beats faster in an attempt to push more oxygen containing blood around the body. My simple non-medical explanation

As your Ferritin is so low I would certainly have the B12 and Folate tested as they too can cause many problems if low. B12 needs to over 500 and Folate at least mid-range.

[KJVW in reply to Marz]

Yes it was a full iron panel, not sure if attaching it in this way will work. I've actually just seen a cardiologist today and he diagnosed SVT, I think beta blockers are the only way I can tolerate thyroxine for now. I will certainly look into improving my ferritin and getting folate levels etc checked. Thanks for the info!

[KJVW in reply to Marz]

It didn't work, these were the results:

Iron 18.3 (5-30)

Transferrin 2.9 (2-3.6)

TIBC 64 (46-77)

Saturation 29% (10-45)

[Marz in reply to KJVW]

Am not good with Iron - there is a website - labtestsonline which could give more information. Also use the Search Thyroid UK Box here on the Forum - type in Iron results Link below for B12 Deficiency - scroll down to view the neurological symptoms and the excellent videos under the heading Films on the Menu.

b12deficiency.info/signs-an...

healthunlocked.com/search/i...

The above link takes you to 1000's of previous discussions about iron treatments

[greygoose]

I think the heart problems are more likely to be from under-medication than the levo itself. Your TSH is much too high at 3.8, and your FT3 too low. Fiddling about giving increases on one day and not another is not going to help. You need a good, honest increase of 25 mcg every day. Your TSH needs to be 1 or under, and your FT3 up nearer the top of the range. You are under-medicated, plain and simple.

[KJVW in reply to greygoose]

Thanks greygoose, I'm a little bit scared to take more. I took 100mcg this morning and my heart is pounding away right now. Perhaps I just need to bite the bullet and increase my dose with beta blockers on board.

I actually went to A&E on Sunday night after a particularly scary run of palps, they thought I might be overmedicated so ran a thyroid test. They did the test 12 hours before the test results I posted above and got this: TSH 5.8 T4 19.2 T3 4.3, obviously it's a different lab but the reference ranges were the same and I didn't take any levo between the blood tests. I'm amazed that they were so different. I had to go ahead and get the second test 12 hours later because my endo only wants to look at fasted, early morning tests.

[Marz in reply to KJVW]

TSH can vary according to the time of day and drops after eating - so to compare results they need to be taken under the same circumstances. Please try and improve your Iron levels and see how you go - it could make all the difference. Your Endo is correct in wanting early morning and fasted tests - hooray