Or, then again, maybe I am just too impatient. The story so far is this. I have no thyroid - removed surgically after Graves' and then later Toxic Multinodular goitre.
Many of you know my story.
For 23 years, I was taking 150mcg Levothyroxine. I was OK although not in the running for the Marathon, I always had pain with exercise, even hanging out the washing was arm-agonising. But I worked and felt reasonably well.
Then I moved. The new doctor decided that according to my 'thyroid tests' I was over-medicated and should reduce to 100. that was in November 2005. In January 2006 I had several TIAs and very high cholesterol. Given statins which almost crippled me but although my cholesterol fell my TIAs continued. I stopped the Statins, and since I was still having the TIAs the doctor put me on blood thinners, and having tried several I finally ended up on Clopidogrel (and Lansoprazole because I have a very delicate stomach) Still on 100 mcg Levo. Also was having rapid heartbeat (130-145) most days at some point. I still had a small stash of Levo so when I felt I was getting really low, I would take an extra 50 and it helped.
All my complaints fell on deaf ears, I had a thorough check to see what had caused the TIAs and why I was TATT etc. etc. etc. They all came back clear apart from a heart murmur which was caused by a valve which had been damaged when I was thyrotoxic in my youth, it was asymptomatic they said. Although my Cholesterol was now 10, I had no artery blockages.
Then I ran out of spare thyroxine, so I was limited to only 100 all the time. I could feel myself going downhill fast and was becoming desperate. At that point I found this site, and it gave me the impetus to try to get the doctor to do something for me as I was all but bedridden and agoraphobic, and had put on 2 stone. (I was already a bit overweight)
At the beginning of December I persuaded the doctor to increase my Levo and he reluctantly agreed, starting with 125. So I began taking 125 and have to say I started feeling a bit better. I lost a few pounds in weight, and in contrast to before, I was much improved. I also began to take COQ10 to support my heart.
He also sent me for a battery of tests again - persistent cough, TATT, myalgia (that's what was on the form). I went for the tests including a chest X-ray and bloods,
I went to him three and a half months later, and he was far from helpful, threatening to reduce the thyroxine again as my TSH was too low. I lost weight (5lbs), my cough was gone, I was no longer 'depressed' (I still have the agoraphobia) so I managed to persuade him to carry on with the 125, asked him about my cholesterol which had gone down to 8 from 10, and then he looked at my X-ray and told me "Your chest is clear. Your heart is bigger than it should be, but that doesn't matter. Se you in six months." So now, I not only have a valve damaged but an enlarged heart.
I did a private Blood test because they did not do the T3, and the results came out as follows:
TSH 0.07 (Range 0.27- 4.2) low
Free Thyroxine 24.6 (Range 12.0 - 22.0) high
Free T3 4.5 (Range 3.1 - 6.8) normal
With those results I felt I could afford to add a small mount of T3, so I cut the Levo to 75 and took 1/4 of a 25 mcg T3 at 6am and 3pm, I felt almost immediately less pain, more alert, more active, and I lost two pounds in weight, but then I would have a total crash and the irregular and fast heartbeat seemed to be worse. My BP was a bit higher but still in normal range. Temperature still never higher than 36. I was a little panicky and decided that perhaps I was not ready for T3 yet.
Instead, I have slowly increased my thyroxine from 125 to 137.5 (an extra 1/2 tablet of 25 mcg) starting on alternate days for 2 weeks and then every day. I am starting to sleep better, more alert still, at first I regained the two lbs I lost but they have now gone again, I have started doing more in the house, but I was still having the horrible fast/irregulare heartbeat sometime up to 4 times a day. I wondered if it could be my adrenals not strong enough, so I am now taking Nutri Adrenal as of yesterday and a Vitamin B12 spray (methycolbalmin).
I am finding I will have a good day with no heart problems, then a really bad day. Today was good until 6.00pm and than I had a heartbeat irregular and fast (about 126 to 140 at times) which lasted for 40 minutes, longer than ever previously.
This is really bothering me, so I wonder if anyone has been in my situation, I know I have to be more cautious because of my heart, but where do I go from here? My Basic Metabolic Rate is still quite low to normal - this morning it was BP 108/67. pulse 73, temp 36.4.
What I really need is some reassurance, I suppose, or some advice. I am thinking to see Dr BDP if I can, but basically my own doctor only wants to reduce my thyroxine every time he sees me. I know if I let him do that, he will eventually kill me.