I’ve just had my annual review, not with my EP but by a member of his team who was very well informed and helpful. Potted history, diagnosed 2014 with lone persistent AF, responded well to a CV later that year and remained in NSR (with occasional help from Flecainide) until Cryoablation in August 2016. Not much AF for almost a year but started to get break throughs because there had been a problem treating one of my pulmonary veins. Second RF ablation in August 2018, all well for just over 7 months then a series of relatively mild AF episodes plus tachycardia which prompted being put on the list for a 3rd ablation. Because my thyroid was showing signs of being overactive, I opted for thyroid treatment and ablation was put on hold subject to the outcome. It’s now just over a year since I have had an AF episodes and over 18 months since I have taken Flecainide as a PiP.
24 hour holter taken before appointment showed no signs of any AF and I was expecting to be discharged back to my GP but I was pleased when the Doctor responded positively to my request to remain with my EP for another year. I nice bonus especially as today is my wedding anniversary!
Hope my story is helpful and encouraging for others, just hope my luck and good fortune lasts……
Don’t think so Jean, when I was first diagnosed with AF, I had blood tests for Thyroid and although the TSH levels were suppressed, T3 an T4 were within range and the cardiologist referral letter to the EP said that he felt it was unlikely that it was the cause but that recommended it was monitored and it wasn’t until 2019 that the T3 started to move out of range. For some reason, it seems that blood tests do not automatically include T3 which is a bummer!
No. The TSH is a pituitary hormone and is not a good guide for anything much at all, despite current medical woeful understanding of thyroid conditions believing it's the gold standard. I am in the thyroid group here. The man who invented the TSH test is also a researcher in the group and regularly says it was meant only as an initial guide. The only way to know if your are hyper or hypo is to measure the T3 levels. And most GP's, hospitals, etc. won't do that here. It's a real and endless struggle to get decent thyroid treatment and care in the UK.
T3 is the active thyroid hormone and the only one that can cause issues.
Hi FancyPantsIn 2019 I had an embollc stroke with AF rapid and persistent.
In Feb 2020 I had a thyroidectomy and 12 lymph nodes removed on rightt with w showing cancer Papillary in them.
I had LOW RISK for it to return so I refused RAI Radio Active Iodine and Suppression of TSH factor.
I have to rely on the T3 synthetic thyroxin pills. I take 125 or 159.
My thyroglobin is down to 3. That is another sign that maybe cancer is present.
The T3 tells whether I am taking too little or too high of the Synthyroid which I changed to as it is far more reliable. In a kiddy lock plastic bottle with an absorbent thing in it and a EXPIRY DATE.
I returned a 25 bottle with a 1/2 pill of something else last week.
I returned a bottle of 100s when the expiry date was less than a 3-month supply for Oct 2022.
TSH is the only test I worry about keeping level and if I stay with up to 22 normal T3 I am and my surgeon is happy.
I cant not takr the higher DOSE if TSH is over 3.0.
Both Surgeon and I read latest in USA Thyroid Foundation. 3 of the top wrote ATLAS OF HEAD AND NECK.. A wonderful book that they found in a University for me. Explains each surgery.
The top surgeon who will only do thyroid operations new or put right blunders says I quote.
We have new results to surveying patients.
LOW RISK patients should not need RAI.
These patients should not need to be in Suppression.
BUT keep to a TSH of 2.0-3.0. daily.
TSH is the marker for me who relies on thyroxin to live.
The above level is NOT TOO LOW of normal or HIGH of normal. Normal is up to 4.2.
But I read those with their thyroid can have a TSH to 10.0 TSH.
Drs should not worry until a patient reaches 10.0 because TASH can flucuate.
I have now had 2 x yearly neck checks with all clear signals.
cheri. JOY 73. (NZ)
Suppression is ugly and those with AF under surveillance should not be in suppression and taking too much thyroxin is toxic with osteoporosis as a result.
Try being a hypo patient, it's almost impossible to get the right tests unless you pay for them yourself. And even with the right tests no one knows how to treat it correctly if the patient has any deviation from the norm. Thousands are left in a kind of limbo of illness and lack of appropriate care.
It's the same most places. Here in France I have an enlightened Endo who was quite happy for me to be on a combo treatment and instructed my GP to measure thyroid hormone levels as well as TSH till afib struck. My TSH was well below range ( she was happy with that and said it was because of taking T3) though thyroid hormones were within range but the cardiologist at the hospital made an enormous fuss ( as if T3 was cocaine) and I think intimidated her. As her approach was not standard for hypothyroidism treatment this would have been easier to do.
My sister was the other way round. She was treated for a hyperactive thyroid, some sort of radioactive material inserted . After treatment she was diagnosed with AF, which is not surprising as it is familial, all five of we sisters have it as did my father. She had just had her check up with the endocrinologist, and has been told she is diabetic. She is 83 and very cross as she had no symptoms. Apparently there is a link between thyroid problems and diabetes !
I had a session with Cardiac Specialist from Auckland and he was wanting to discharge me from outpatients!
I STILL HAVE AF.
But I think it was because I was CONTROLLED on CCB am and BB pm.
I said that the Dr wanted me to have an ECG connected to a treadmill.
He said unnecessary! But I have to stop when I exert myself especially getting to the top of my road and worse as I get to the shops below the SH10.
He agreed to see me next year.
I would think it will be more difficult to see a cardiac specialist if I'm thrown back to Drs.
He said I will have AF for life, I will be on PRADAXA for life.
I am CONTROLLED with my rapid persistent H/R day.
I would NOT be a candidate for ABLATION as I have an enlarged heart.
do not have heart pain, never had, and I cant feel the increase in H/R. Night rate has never changed at 47.
What do you think?
cheers JOY. 73. (NZ)
After removal of Papillary cancer so thyroidectomy and 12 right lymph nodes SURGEON AND I agree to keep my TSH 2.0-3.0. I take 125 0r the odd 150 to keep it there.
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