Free of T3 and free of heart palps.

[Moggie]

Hi All,

Just wanted to update you all on my "No T3" week.

Its been five days now since I took my last dose of T3 and two days since I had my last arrythmia (long may it last).

For those of you who dont know my story I was firstly put on T4 only (up to 200mcg's at one point) and after 6 months of feeling awful my GP agreed on a T3/T4 combo of 20mcg's T3 and 100mcg's T4 but I have been suffering with pounding/skipping heart symptoms since April last year. I tried for months to manage the situation myself by first lowering my T3 and then increasing it, by lowering my T4 and then increasing it but nothing worked and in some cases it made it worse.

By November the arrythmia had got so bad (at times it felt like my heart would stop with the extra effort it was making with the constant thumping and skipping) that I finally gave in and contacted my GP, foolishly I hadn't done this before for fear of her stopping my T3, and she promptly put me on a 24hr heart monitor. She asked me to have bloods done and my TSH result of below 0.05 didnt please her so I did battle to keep my T3 by reducing my T4 by 50mcg's with more bloods in two months time.

I was called back to my GP's again after she had the results of a second opinion on the heart monitor results and it showed up as a paroxysmal artial tachycardia and I was given a grave warning by her regarding strokes and heart attacks, which couldn't have come at a worst time for me as my brother had suddenly passed away, at the age of 57, with a massive heart attack just a few days before, so to say it freaked me out is an understatement.

The situation was complicated even further by an operation for an ovarian cyst being brought forward before the overy twisted and caused further problems so to try and get me stable for the op from Monday of this week she stopped my T3 and increased my T4 by 25mcg's but admitted to me that it could equally be the T4 that was causing the problems.

Tuesday I still had palps which were almost as bad as before, Wednesday they had calmed down until I got up in front of a packed church and did a reading at my brothers funeral, they were that bad that I thought I would be joining him at any moment, but by yesterday, joy of joys, I was palps free and so far today again I have had no palps (you have to bare in mind that T3 takes 3 days to fully leave your system).

It is often mentioned on this site that Low VitD or B12 can mimic thyroid symptoms (brain fog, aches and pains - you all know the symptoms) and seeing as I was put on 50,000iu VitD horse pills due to a very low VitD result in June/July last year I am now wondering if a lot of my "thyroid" symptoms were, in fact, down to very low VitD levels but because I had been on my T3/T4 combo for at least 2 months before the low VitD result I had never really given it a thought or given my body the chance to try an operate with T4 only once my VitD had been corrected.

I now genuinely believe by the way my body has been reacting to the T3 that it wasn't needed (I already knew that I was converting my T4 properly) and my system was being overloaded. I might be writing this blog to soon and the palps might yet again rear their ungly head (I'm keeping everything crossed that they dont so I can have my op) but so far I dont feel too bad on T4 only. Yes I know its early days but I was fully expecting the brain fog to come back with avengence and other thyroid symptoms to start appearing again, expecially as I was only on 75mcg's of T4, but so far (touch wood) apart from some tiredness late evening I'm not doing to bad.

I find myself thinking that its a shame VitD and B12 test are not done when the initial thyroid test is done, if this had happened in my case maybe I would never have ended up on T3 and caused my body so much unecessary stress, the GP's must know that when either of these are low that they can be confused with thyroid symptoms but I'm just grateful that my palps have finally stops (hopefully for good) and I can now concentrate on my impending op.

Please dont think that because of my experience I am now anti T3 because I do truly beleive that it plays an important part in some people's thyroid treatment, and I'm not saying that in future years I might not end up back on T3, but at this time I have realised that T3 is possibly not the way for me to go.

Moggie x

[nobodysdriving]

ok Moggie, thank you for explaining this, so you actually had 'true palpitations', I mean, you had an irregular heart beat with the pounding right?

I have had pounding for months now and its beginning to go away, but my pounding was always regular and never fast, just feeling my heart beating. I tried to lower my T3 and went down as far as 40mcg but at 40mcg I was suffering so much I thought I was dying and my pounding was still there!

I am now on 150mcg and my pounding is almost totally disappeared and when it's there it's milder.

I have stopped taking T3 in the evening that's what I have done....I think it made me over-sensitive to adrenaline and/or did something to my cortisol, maybe it raised it as I very slowly starting not sleeping as well as I used to and taking longer to fall asleep.

so yeah......interesting, thanks for sharing xx

[Moggie in reply to nobodysdriving]

Yes NBD my heart was missing beats at quite an alarming rate. I had stopped taking my T3 night times as well but it made no difference to the heart issue. In fact I could clearly see that just taking 5mcg's in the day time would send my heart in freefall. I've put in a phone call to my GP this morning as I am now getting quite a lot of thyroid symptoms coming back and, although both myself and my GP didn't want me going for the op overmedicated, alternatively I dont want to go for the op being severally undermedicated. I think she has forgotten that when I was on T4 only I was on 200mcg's and, although I'm not saying she should up my dose to this, I do think 75mcg's is just to low.

Thanks for your reply and I glad you are making godod progress to.

Moggie x

[PinkNinja]

I'm so glad you got to the bottom of what was causing your arrhythmia. That must have been so scary!

It's funny how we are all so different. Since I've switched to NDT I am having far less arrhythmia. I was also getting missed beats and "thumps" when it started beating again. I also have bradycardia. The cardiologist could see what was happening but couldn't work out why (I have been referred many times by my GP). I seem to be better with T3, but then it seems that I need it. You clearly didn't. No wonder you felt so bad

I totally agree with what you say about vitamin D and B12. I was deficient in both of these but it took ages before I could get tested. A lot of my symptoms improved on taking supplements and I don't think my transition to NDT would have been nearly so smooth if I hadn't done something about the deficiencies first. Testing these and ferritin in the beginning could make hypothyroidism a so much easier ride for people and potentially "save" the NHS money with all the appointments we end up needing trying to get well!

Thanks for sharing your success with us. I hope you continue to improve

Carolyn x

[Dannia in reply to PinkNinja]

I agree that testing of Vitamins/Minerals should be done as well, as I supplemented with iron first of all (weeks before I got supplements for low D3 and B12) and in that time I noticed symptoms of lethargy, dizziness, hair loss and hypoglycemic like episodes stopped.

I started supplementing and supporting adrenals at least 3 months before I started on NDT and many symptoms had already gone by then.

I may even go back to T4 at some stage, just because it's easier and cheaper to get than self medicating NDT, although I think I have a conversion problem so I have bought T3 too.

But now at least I'm fully aware that I need to keep other 'issues' well too.

I hope you continue to feel well Moggie. x

[Marz]

Hope all goes well with the op' Moggie. Sounds as if you are really in touch with your body - so glad things have settled down for you - especially after all the sadness of late.

I was diagnosed with Hashimotos in 2005 and have only ever taken a small dose of T4. At the most 75mcg at weekends and 50mcg for the remaining days. Last year I could see that my FT3 remained at the bottom end of the range throughout the intervening years. Started T3 last year in February. Just 12.5 mcg ( tabs here are 25mcg ) and lowered T4. As with many Hashimotos people I was not converting T4 into active T3. Slowly increased T3 to 25mcg throughout the day. All last summer I suffered with overheating and increased pulse which at times was over 80. Spoke with Dr P's clinic and they advised slowly reducing T4 and I became T3 only in October last year.

My pulse still remained around 80 bpm - and yes I was aware I had a heart in my chest if you know what I mean. Occasional missed beats but generally more even than before taking the T3. So I took the view that my heart had been a lazy muscle and was waking up ! This week I decided to stop the T3 for a couple of days and yes my pulse is now around 74/76. Now back to just 12.5mcg on waking.

Fibro has returned badly - but on checking my diary it was also bad last year in February and March - so it must be the weather ! Had blood tests yesterday to check on VitD/Calcium/B12 and Thyroid. I too started VitD last February along with 1000mcg of B12 when I started the T3 and am wondering if conversion became more efficient and I was overloaded with goodies. Who knows.....in this wondrous puzzle of the thyroid.

A year ago I thought the improvement was due to T3 but to support your thoughts it could well have been the B12 and VitD. Thanks for sharing Moggie - it certainly has helped me.

Take good care.............x

[Moggie in reply to Marz]

Thanks for your kind words Marz, its just so crazy this thyroid illness isnt it. You think you have got it sorted only for it to come back and bite you again, sometimes years along the line.

I think your right and I am quite in tune with my body and my instinct was screaming at me NOT to go for this op whilst I was on the T3 - cant explain it but it was a knowledge deep inside me that was telling me this would be the wrong thing to do.

I truly believe that I am one of the lucky ones, who's GP is doing her best to try and sort the problem and I dont know how I would have coped if I was self medicating and couldn't have gone to her for help, although again I think my intuition was so strong that I would have do exactly what my GP has done.

I have also had an awful lot of help with this from Naamisue, who has helped guide me through this minefield with her extensive knowledge of all things thyroid as well as her common sense attitude - I think everyone on here should have a Naamisue to be able to talk things through with, I honestly dont know what I would have done without her.

Glad that my blog has given you something to think about regarding your own situation Marz, and I hope you hit on the right dosages soon.

You take good care to.

Moggie x

[DeniseR]

Hi Moggie

Sorry to hear about your brother, it's difficult enough at times like these, without feeling awful as well.

I'm glad you seem to have managed to sort the palps and I hope they stay away! I have ectopic beats according to a 24hr ecg, the palps were gone when I had mine but it still picked it up. I have the palps on and off now and just live with them but they don't sound as bad as yours.

Good luck with your op, I hope after that you can start getting back to feeling ok

D X x

[Moggie in reply to DeniseR]

Thanks Den,

Unlike you I stupidly didn't tell my GP about the heart issues for nearlly nine months so by the time I owned up to the problem it was quite bad.

Hope yours sort there self out soon to. How did you get on with your endo?

Moggie x

[DeniseR in reply to Moggie]

Have PM'd you x