This is in reply to a previous post by another member - sorry forgotten name and can't leave this page in case I lose what I've already typed. Just thought it was a long reply and may frighten you
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I've been hypo for more than 20 years - the past 13 years I've suffered with intermittent palpitation type episodes. (mannitol seems to have contributed to a large extent) 2015 after drastically reducing my levo intake my GP suggested that I wore a 7 day heart monitor, which found that my heartbeats were all over the place, AF's, missed beats, arrhythmia and fast beats. I had a pacemaker fitted in 2016 but still got the odd episode - I even asked that the pacemaker be checked to see if it was working.
I joined the British Heart foundation (along time before joining TUK) - I constantly read and researched - when I asked whether there was a connection between thyroid and heart I was told - both by email and on a zoom meeting, organised by British Heart Foundation, that - - "hyperthyroid = tachycardia and hypothyroid = bradycardia" This confused me as I was told that I had episodes of tachycardia AND bradycardia - so went around in more circles until I found this forum much by accident. Thank goodness.
I wonder - - how long do medical students actually spend on learning about the thyroid and health implications if something goes wrong??
I've observed that there is a push to help prevent diabetes; rightly so. However, I feel that problems regarding the thyroid are equally important and if attended to in an open minded way could save a great deal of distress to the patient and money for the NHS. In the long run its false economy to keep fobbing us (thyroid patients) off.
Couldn't this issue be brought to the House of Commons as the recent debate about free HRT was? Good luck everyone.
Written by
Dillongirl
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I'm hypothyroid and have tachycardia (fast heart rate). In my case it started when I was very short of iron/ferritin.
When over a long time I improved my iron/ferritin levels my heart rate fell to more normal levels. Unfortunately for me, once the tachycardia developed it has a tendency to start up again at random.
I take beta blockers to control the speed of my heart but only when necessary.
My heart rate reduced when I was prescribed T3 added to T4.
The cardiologist couldn't figure out why my pulse went haywire during the night sometimes to 144 bpm and was contemplating putting an implant in my heart 'to see what was going on'.
Just then T3 was added to T4 - palps resolved and I had no more consultations with the cardiologist.
I now take T3 alone , I feel well but have now recently been diagnosed with a condition called "Polyglandular Autoimmune Disease No.3.' T3 resolved all of my symptomas. I've even reduced my dose recently.
I have been taking T3 for some years.. My first dose of T3 was added to T4 and severe palps disappeared. I improved even more when I stopped levothyroxine.
The other autoimmune conditions were gradual, i.e. alopecia, vitiligo etc etc.
I was also diagnosed with Pernicious Anaemia long before I diagnosed myself with hypothyroidism two hours after GP phoned earlier stating that my bloods were fine and I had no problems at all. I cried and thankfully I had a blood test form, ordered previously, got a new blood test. GP didn't understand what a TSH of 100 meant and told me there was nothing wrong with me!
Omg you poor thing. Nothing wrong with a TSH of 100?? What planet is he/she on.
So sorry to hear about the gradual development of other auto immune conditions. That’s tough. I thought with thyroid function restored through treatment with T3 it would mean overall health would improve.
I take T3 only and it didn’t make any difference to my sinus tachycardia ( 130-140 at rest). It’s only been since I started taking beta blockers that my heart rate has improved. My husband, on the other hand has bradycardia - 50 beats per minute 🥴
Not everyone is identical and that's why some people do well on levo and some don't.
I don't understand why NDTs (natural dessicated thyroid hormones were withdrawn) as its safety has been proven since 1892. It was the one and only replcement until Big Pharma wanted to increase their profits and eventually levothyroxine (T4 alone) was introduced. It made me very unwell indeed but others have no problems with it at all and feel well and are symptom-free/.
My husband's pulse rate is around 32 and has been for a long time. I think it is because he used to play squash.
Thank you for this reply. I'm trying to summon up courage to challenge (?) the results of my blood test back in September. That test showed that 'everything was normal - no further action required' Lately, I've had a shift in energy and am doing more than I've previously been able to - think I'm seeing long covid off finally. AND I've had those flutters under the sternum after a busy day - yes, message to self about pacing.
That’s interesting, when I was hypothyroid (on T4 but T3 low) I was brachycardia but now I’m taking a low dose of t3 my heart is rock solid. You’re right, they segment and compartmentalise parts of the body as if they’re not interrelated. Definitely agree, hypo and hyperthyroidism are long term chronic diseases that need more guidance and management for us, as well as more training for GP’s.
It used to be 125mcg Levo, but I suffered for years with low symptoms. Since it’s changed to 100mcg Levo and just 10mcg liothyronine t3, it’s really made me feel better. My heart and digestion have improved. My blood tests are normal for the first time in absolute years. Despite this, my GP said they wouldn’t prescribe t3. in other words they want to return me to abnormal blood tests and feeling worse - so that I nearly fit into their mono policy of T4 only.
Wasn’t it your GP then who prescribed lio? Are you getting it elsewhere and even though you’re clearly doing well on it your GP is saying s/he won’t prescribe it?
That’s exactly it. I went to a private endocrinologist who agreed that the abnormal blood tests indicates poor conversion from T4 to T3. I did a three month trial and felt better. I went to my GP and showed them the (private) blood test that showed my TSH had come down normal and my T4 and T3 were both normal. Despite the NICE guidelines stating that if a three month trial is successful and you’ve gone to an NHS endocrinologist (though he was private he also works for NHS) then you could be prescribed - my GP surgery are adamant that they won’t prescribe it because I’m in an area that doesn’t allow it. So they’d prefer me to return to abnormal levels and be ill. That’s about the sum of it. Sorry I’m venting, lol
Everyone needs somewhere they can rant/vent and this is the place to do it because many of us understand the plight involved. It’s frustrating to the point of causing serious stress
Not sure how it works but I presume your endo will continue to provide prescriptions
Yes if I have the money to pay his consultation fee and private prescription. It shouldn’t be this way. thanks for your post, I do get support and valuable information from this site
Thank you for sharing your dose. I couldn't agree with you more. Dr's dose by labs and patients can never feel optimal. Dr's have to rethink this. Labs over symptoms or Symptoms over labs. Who are they going to believe??? I'm very happy for you that you found the dose that works best for you. You and We have to be our own Beat Advocates.
I think you are so right Dillongirl If the medical community, government and population at large had an awareness of the criticality of the little thyroid gland and it’s importance in regulating so many disorders and diseases our world would be in a better place.
I think more and more of us are becoming hypo or have suboptimal thyroid function and it is the root cause of so many conditions like those that result in cardiovascular, arthritic, metabolic etc issues.
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