af and endrocrinologist: long story... - Atrial Fibrillati...

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af and endrocrinologist

Afib_girl profile image
15 Replies

long story short I was diagnosed w paroxysmal afib in 2021 and have had 3 unsuccessful ablations and 1 unsuccessful cardioversion. I am 38 year old female in the u.s and am otherwise healthy besides the frequent symptoms of afib. I have tried medications which did not help and have seen 2 cardiologist and 2 eps without much success.

I am prediabetic on metformin and had a full hysterectomy a few years ago. I am not on hrt and have had no menopausal symptoms. Would seeing an endocrinologist be beneficial in anyway? I am trying to see if maybe there is some underlying cause bc nothing else has worked. I am at my last resort besides just living like this as I don’t want to have another procedure at this time. I am on Eliquis.

I do exercise min an hour at a time and watch what I eat. I do not loose weight easily I would have to practically eat nothing to lose 1 lb but I run most days of the week.

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Afib_girl
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15 Replies
etheral profile image
etheral

Have you tried Tikosyn (dofetilide) ?

mjames1 profile image
mjames1

You might be a good candidate for the Wolff Mini Maze, a minimally invasive surgical approach. It has worked well for many where catheter ablations have failed.

Jim

jeanjeannie50 profile image
jeanjeannie50 in reply to mjames1

I agree with Jim. There are consultants in Japan and Houston, Texas, who do this Wolff Mini Maize procedure which is highly praised on this website by those who have had them. Wolff himself in Houston and in Japan a consultant who trained with Wolff. We've had successful stories from patients of both of them.

Jean

Nezzera profile image
Nezzera

Hi AFIB girl,

Have you had your Thyroid and Adrenals checked?

You are so young to be having all of these problems.

Seeing an Endo is probably a good idea.

Afib_girl profile image
Afib_girl in reply to Nezzera

Yes just basic test and it came back fine

Bodydoctor12 profile image
Bodydoctor12 in reply to Afib_girl

Basic tests don’t tell you much - that’s if you mean just TSH level

This is from somebody's comment, written a year ago. You might find it interesting:

"They had me bouncing around all over the place to find answers because I refused to accept that there was "nothing wrong" and I just needed "more stamina" - even referred to an endocrinologist - where I did a lab test that tests for the rare pheochromocytoma - the lab then proceeded to incorrectly process my test and doubled my result - so for a week or so I thought I had that, until I noticed the test was done wrong, myself - and showed the endocrinologist, so she had me repeat the test and it came out fine. I then contacted the lab and they ended up refunding me the cost I had paid out of pocket for the test.

I've been offered ablation (despite my episodes being fairly rare) or flecainide, I refused both and I'm currently on 12.5 mg of atenolol every 2 days as I've weaned myself of it due to it causing me extreme fatigue and depression."

I’m from the UK so I’m not really familiar with the medical treatment plans which operate in the US so I’m always cautious about suggesting what folk should or shouldn’t do. That said, I really feel for you as you are very young to be experiencing such difficult and unpleasant health problems. There is a strong link between thyroid problems and AF. Both an over and under active thyroid can cause AF so a simple blood test would determine whether or not your thyroid was in range. In the UK, if the thyroid is outside the normal range, an EP will recommend that it is treated before anything is done to treat AF.

Exercise is good, as long as you don’t overdo do it because excessive or extreme exercise can also cause AF. Purely as a guide, if you are able to have a conversation whilst exercising you should be OK. Mini-maze procedures are almost impossible to have on our NHS system of treatment but certainly worth considering for you in the US once the other issues mentioned have been checked. I certainly hope you can find a suitable way forward, good luck……

MiniMeGreen profile image
MiniMeGreen

I agree with mjames1 comment below. You should check for vagal AF symptoms here richardbogle.com/blog/vagal... and if it's an yes you should check with Randall Wolf here wolfminimaze.com/. I doubt that endocrinologist will direct you correctly though it's of course possible.

meadfoot profile image
meadfoot

Try every route out there, an endocrinologist may help if not try other routes. I took years to find a medic who diagnosed my excruciating gastric pain correctly and found it was a trapped nerve deep on my epigastric. He sorted it in minutes.

My cardiac arrhythmia has been improved by finding a cardiac consultant at a top hospital the other end of the country. Never stop fighting and pushing to secure your health. Best wishes.

Peony4575 profile image
Peony4575

It can just be genetic I know someone who has had AF from your age, her mum and gran both started with it young . High circulating sugar levels and carrying weight can both be causes/triggers. Have you read Dr John Day The Afib Cure that is a very good book

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I feel that the first step for you is to CONTROL both your H/R high and control BP.

BBs such as Metoptolol or Bisoprolol did very little to control my rapid and persistent AF.

Introduced to CCB Diltiazem 180 (too high) then to 120mg which was spot on AM to control my H/R Day.

My BB Bisoprolol was better for me to CONTROL my BP.

No ablations, no cardioversion or Anti-arrhymnic meds not for me as I have an abnormal heart with both left and right ventricles in trouble.

So I do have to depend on meds.

I am happy to say now that 110-130. / 69. and 60s H/R Day at rest I Iive with.

I cannot run or hurry but I am now improving with distant. It's been 4 years post stroke and Thyroidectomy plus ca removed 3 years 5 months post thyroid operation.

Be aware of events and I feel a cardiac specialist is best for you but one who is interested in your history.

Control affects your AF.

cheri JOY. 74. (NZ)

AKatieD profile image
AKatieD

Sorry to add to the diversity of opinion. It may be true about a thyroid problem or that the AF is solely heart related, but you also specifically mentioned a hysterectomy and so your sex hormones must be low too.

Oestrogen is known to have a protective effect on heart rhythm and there are some studies on the

effect of low testosterone too (women make it as well, just less).

I would be looking for someone good (not necessarily an endocrinologist) to look at all your hormones and replace what you are missing. I think you would only know if they are the cause by replacement and trial over a reasonably long period ( not a quick fix) to see how you respond.

HRT may be good for your long term health anyway as you are so young - have a google on the pros and cons.

Bodydoctor12 profile image
Bodydoctor12

When I consulted with Dr O in Japan in regard to the minimaze operation he told me that the single most important factor in regard to my Afib is the balance of my thyroid hormones - I was diagnosed with low thyroid fundtion 13 years ago. The person I consulted did not only check my thyroid levels but also all my other hormones as his way of working is to look at the whole hormonal cascade and how they interact, because they do. It’s a fact. I would think that with your health profile this is an important fact. I consulted with the Thierry Hertoghe practice in Brussels as the UK have a very limited approach to hormonal balance, especially in women. Good luck. I’d focus on a functional medicine practitioner recommended endocrinologist.

Ossie7 profile image
Ossie7

good morning , I can totally understand you not wanting to go down another procedure route at the moment , but as others have mentioned , possibly one of the mini maze procedures could be a possibility down the line ? I’m 20 years older than you at 58 but still consider myself ‘too young for this damn AF ‘ and have decided that should my 3rd ablation that I’m on the w/l for not work my not step would be a trip to Tokyo ‘

I too have to starve myself to lose half a pound , even more so now I’m on these beta blockers . Always tested negative for under active thyroid . However , been seeing GP for chronic headaches secondary to a head injury and blood tests revealed raised calcium levels, repeated a month later , still raised , so had full bone profile bloods done . This showed high parathyroid hormone of 154 ( normal is 64 at highest ) . Turns out I have primary hyperparathyroidism . Gives a battery of symptoms , all very none descript such as fatigue , anxiety , abdo pain . But can cause weight gain !!! As calcium levels only slightly raised going to be monitored only as the treatment is surgical removal . Sorry for the long post but just wanted to say , it is worth while further investigating your endocrine system , especially with your hysterectomy and being so young . Wishing you all the very best x

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