I have m.e/cfs - please don't tell me I don't it's just insulting - and have experimented with all sorts of different ways of treating my hypothyroidism, low cortisol and m.e.
At the moment I have found 85mcgs T3 plus one quarter of a grain of NDT (last thing at night helps with sleep) is the best dose for me. I am currently on 20 of hydrocortisone, but I had a cold - Yay a good sign because its the first time my immune system has reacted as if I have a cold in four years - so stress dosed and am now bringing the HC gradually down. Took 25 so far today.
The thing is that I'm going through one of those patches where my heart beats really loud and I'm very breathless too, hardly any power for walking up stairs etc.
Does anyone have a theory, or better still some evidence, as to what is causing the loud heart? Is it not enough HC, or T3 or too much? Or something else?
I had my bloods done recently. My ferritin is high 255 - but getting it down is a problem as i can't give blood. It's because of my diet being iron rich and having had a hysterectomy. I'm not changing the diet as it's something I've been working on with an m.e dietician specialist.
My thyroid results were:
0.01 TSH
1.8 T4
6.2 T3 range up to 6.9 I think
Thought these weren't bad considering what I'm taking.
Any advice about the loud heart, it is so annoying, but normally comes with reduced power too?
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sulamaye
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What you are calling a loud heart sounds very like what I would call palpitations. I take beta blockers when things get very bad, but I try and keep them to an absolute minimum.
I haven't found a supplement which helps once the palpitations start. But if I am on the wrong dose of thyroid meds or the wrong dosing pattern I can get palpitations a lot.
What is your dosing pattern? How do you split the 85mcg of T3 throughout the day?
When I took T3 only I tried shifting all my T3 into one dose per day, and it was a disaster. My heart was doing fine while multi-dosing. But once I started taking the bulk of it as my first dose of the day I had a lot of problems with palpitations and tachycardia. I've never managed to get back to the way I was. I've now changed to NDT as an experiment.
Do you have a blood pressure monitor? One thing you could do is try taking your blood pressure every hour and record it. Note when you take your T3. It might be that just a change of dosing pattern might fix your problem.
Thanks. Yes I've used Paul Robinsons advice and taken BP and temps etc, my doses are 35 about 6 am 30 at 11 am and 20 at 4.
It's not palpitations there is no speeding up in the HR simply loud booming that I can feel and hear. It goes through phases, there are days and weeks when it doesn't do it.
Sulamaye, hypertension can cause loud heartbeat. As you are having breathlessness and feeling weakness as it occurs you should have your GP check it out.
Thanks clutter, my BP is fine I test it at home. I fell weak most of the time because of the m.e. That's the problem with it so many different symptoms that come and go. Some come more often than others.
i had pounding thudding heart as one of my symptoms relentless for years the only thing that stopped it was thyrogold only( dr Lowe) I was told I had CFS/ fibro but as it turned out I have hashimoto disease ( autoimmune thyroiditis) . I now have no muscle and joint pain no foggy brain , no pins and needles , numbness, inner tremors etc and I have more energy and feel well in myself ( 76) . When I was eventually given thyroxine it was amazing I was 50/60% better but still had quite a few symptoms the pounding heart being one of them . i would lie awake listening to my heart pounding unable to sleep drove me crazy for years until I was prescribed amitripyline two tablets at bedtime and I fell asleep easily slept all night and woke clear headed ., still had the thudding heart tho !! We are all different what works for one doesn't for another but for me thyrogold has given me my health back .
I'm glad for you. Had you tried t3 only or other ndts before thyrogold?
I've been diagnosed hashis since 1994. About two years ago some idiot GP took away the t3 from my t3 t4 combo and I slid back three years. I thought hey maybe it's my thyroid after all. Sadly not. I am not as I'll on t3 only but even with hydrocortisone it hasn't got me to a stage where I'm not in bed 50% of the day. 🙁
I became ill in 1995 with a multitude of awful symptoms I woke one morning and felt I had been hit by a truck lost my appetite completely ate nothing for six weeks only drank fluids , thyroid was dismissed for years just because my blood tests always came back normal , eventually I was prescribed thyroxine by a new doctor who was prepared to give me a trial going against normal blood tests , amazing !! I still had some nasty symptoms so a few years on I was diagnosed with hashimotos . My endocrinologist did not want to give me T3 and it was a hassle to get him to prescribe it but eventually he did 10 mg s a day did absolutely nothing so I thought he would up it or even try NDT ( armour) . He was adamant I was not getting a higher dose of T3 to add to the T4 and no way would he trial me on NDT . My only hope was to self medicate so last year I sent for the thyrogold and I have not looked back . The thudding pounding heart has gone with all the other awful symptoms , it only took 19 years I found GP s and doctors were arrogant intimidating rude unhelpful and would not look past the thyroid blood tests !!!! In the world of thyroid , blood tests rule !!!!
Yes it's a common story here isn't it and the NHS and doctors are very narrow minded and rather stupid. Despite explaining t3 etc to my GP and despite me getting t3 via an NHS endo so my GP has to prescribe it, when my bloods last came back she was still surprised and worried by my low t4 and I had to explain, again, how of course my t4 was low, that was the whole point of t3 only to suppress the production of t4 because it all gets turned into rt3 in my case!
I'm so glad for you that you finally found the solution to your problem, I think there are probably many people diagnosed with m.e who are like you, sadly it isn't the problem with me. I got excited a couple of years back but t3 and NDT isn't the answer for me.
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