Iodine getting thyroid functioning but high TSH should I be worried?

 Although this question is really for the iodine forum I am also posting in thyroid forum incase someone has had simillar experience.

Thanks in advance!  - Emily

TLDR

"I have read that Iodine can affect TSH levels but is this just to be expected if I am getting/forcing my thyroid to work again 'naturally'?"

"I don't believe I have ever had an underactive thyroid and am not concerned that my T4 is low as I am still taking T3 (as I have no sumptoms of being hypo)."

"I guess after all this my question is that if my TSH is so high am I risking damaging my thyroid or myself by taking so much iodine and if I should be reducing it what should I be reducing it to. "

Hi, I have been on thyroid medication for 20 years after convincing myself and doctors that this was the cause of my fatigue and some hair loss (despite my thyroid tests always being in the 'normal' range).  I have a family history of thyroid dysfunction and I felt so tired and ill this seemed like the obvious answer.  They started me on 25mcg T4 but after ending up in hospital with multiple organs seemingly failing and my TSH shooting up to 16 they increased my dose to 200mcg (I now know that many doctors will not test TSH when someone is very ill in hospital as it can do very strange things).  In less than 5 months I gained 4 stone and had to cut my hair short as it was just falling out.  I felt worse than I did before but didn't know where else to turn.  I stayed on this dose for 20 years despite all my results showing I was over medicated yet I had all the symptoms of being underactive.

Earlier this year I switched from T4 to T3 and felt a lot better (my underactive symptoms went away and I was, like magic, able to get out of bed in a morning after 7.5 hrs instead of sleeping for 13 and still not being able to get up feeling like I hadn't slept atall) but my blood sugars (I'm T1 diabetic - since age of 8 - on pump and cgm) went crazy and it was clear my insulin sensitivity was being affected and synthetic T3 has been linked to this.  If it were not for this I would have just carried on with the T3 as it seemed to be working great.

So I started taking high doses of iodine (3 drops of lugoli's 15% twice a day) along with selenium, magnesium, thyrosine, Vit D (as it is winter in the summer I get out in the sun) and Vit K.  Then I reduced my T3 from 25mcg twice a day to 12.5mcg twice a day.  I did not notice any difference, I feel and still do feel fine AND my insulin sensitivity has returned!  As far as I'm concerned even if I can't stop the T3 altogether this regime is working.  BUT...

I asked my doctor to test my T4 levels (she did not want to test my T3 as the NHS considers that a waste of money and I did not mind as the important thing for me was to see if my thyroid had started producing T4 again).  As a note when I was taking levo my T4 levels were sometimes as high as 38 and my TSH 0.03.  When I was taking T3 my thyroid stopped producing T4 altogether and my TSH went down to 0.01.

I had a panicked call from my doctor a few nights ago, saying my results had come back and I need to start taking levo again as my T4 was 6 and my TSH 22 (the first time in my life, bar the test 20 years ago whilst hospitalised, when my results have come back showing I'm underactive).  I have refused to do this as I am not showing any symptoms of being hypo-thyroidal and am pretty sure that the T3 I am taking is filling the gap so my thyroid does not NEED to produce as much T4 as I have enough T3 in my system.  The T4 result is just as I was hoping for as I am still taking some T3 (and my blood sugars are no longer doing very strange things).

I have read that Iodine can affect TSH levels but I have not found an answer to if this can be expected if I am getting/forcing my thyroid to work again 'naturally' OR if I should be concerned that I am overdoing it with the iodine?

There are so many articles out there saying that iodine should supplementation should not exceed 150mcg a day which personally I think is bollox and another lie spread by the pharma industry but as they won't do useful research on the benefits of iodine could I be doing myself harm at the same time?

I have also recently realised (though yet to be officially diagnosed) that I probably have bi-polar (I've always known that I don't have 'normal' thought processes and violent mood swings (with triggers not a physical thing - other than blood sugars) and believe that this may well be the cause of my feeling so bad way back then when I convinced them to put me on thyroid meds.  I tried to ask this question in a thyroid forum and was told catagorically I need to go back on levo as I was clearly underactive and hashimotos was often mis-diagnosed as bi-polar.. Well, surely if people with hashimotos can be misdiagnosed with bi-polar surely it can also happen in reverse (also bear in mind I was never diagnosed with it I just persuaded them to give me levo and things went downhill from there with my thyroid and symptoms?  After keeping a mood diary realise that I do have distinct blocks of manic behavior (which I always thought = happy but now I've made that connection a lot is falling into place) including some days of euphoria which can start off good but by 5pm I feel like I am absolutely FLYING (I wish they were every day) and blocks when I feel rubbish and low (but not depressed.. I've been depressed and this isn't that).  I realised when making this diary that for the past 2 weeks I'd been going out to doc/hospital appointments in my pjs with no makeup and was absolutely mortified as at other times I will spend 40 mins doing my makeup to go to the corner shop at the end of my road!  Actually this realisation has made me feel a whole lot better and on the bad days I now know its not the end of the world and in a day or a week I will be bouncing off the walls again (previously every bad patch spelled the beginning of the end).  I've definitely had bi polar tendancies since being a child but because of chronic illness since the age of 8 and many complications as a result I never made the connection that in fact my physical health might be being affected by my mental health!  It is very freeing to realise I'm just a bit mad not necessarily falling apart!

I don't believe I have ever had an underactive thyroid and am not concerned that my T4 is low as I am still taking T3 (as I have no sumptoms of being hypo) which I have promised not to reduce further between now and 4 weeks time when they are going to test again but next time test my T3 too..  If it were up to me I would be reducing my T3 to see if my T4 increases.  I guess after all this my question is that if my TSH is so high am I risking damaging my thyroid or myself by taking so much iodine and if I should be reducing it what should I be reducing it to.