When I last posted Simon had been abandoned by Dr S who had emigrated and he as passed over to the other Endo in at CHG, this is the story so far..... I have cut and pasted it from an email I just had to send to Simon's new GP! We rang the surgery yesterday to speak to the GP and fess up to a few things to be told that he is 'unavailable for the foreseeable future' I think we must be scaring everyone off!!!
Thursday 14th March 2013 - Simon had his 8 week blood test done after being on T3 only. His previous joint/muscle pains had almost gone but the tiredness he was having was extreme & getting worse. Work was becoming a huge struggle and we thought that the thyroid levels would come back low. He was taking 20mcg T3 morning, 20mcg evening. The blood tests came back with very low levels TSH - 79.39 (no T3 tested although the Dr specifically asked for it and said he was on T3 treatment only!) our GP rang Simon in the evening on 15th and suggested he went to A&E to seek some advice as he has been trying to contact Dr S (who had prescribed the dose) without success. We went to A&E and they couldn't suggest anything at all.
Monday 18th March - Simon was advised by Dr S's secretary that he has emigrated and had not transferred his notes onto anyone, she suggested that the other Endocrinologist in Colchester was Dr B, she spoke to his secretary and asked for a call to be made to Simon regarding further treatment. Dr B did call Simon and said that he wanted him to try the T4 & T3 combined. We did say that Simon suffers with terrible joint and muscle pains on T4 but he wanted him to give it a go. He said to take 10mcg T3 & 100mcg T4 in the morning and 10mcg T3 in the evening.
Friday 21st March - Simon was in so much pain and discomfort by now work was proving almost impossible. He went to see our GP to see if he could come off of the T4 and go back on T3 only. He rang Dr B while Simon was with him and asked if they could put him on 20mcg T3 morning, noon and night. Dr B wanted to continue with the combination and said that Simon should up the T3 to 20mcg in the morning, along with 100mcg T4 and 20mcg T3 in the evening.
Friday 28th March - Simon by now couldn't even take his own socks off as the joint pains were so severe, even walking up the stairs was a real struggle. We decided that as it was a Bank Holiday weekend and there was no one to discuss it with that we would take the decision for Simon to stop the T4 and take the suggested dose that our GP wanted him on, ie, 20mcg T3 morning, noon and night.
Sunday 30th March - The joint pains started to subside and whilst the extreme tiredness had not gone Simon was looking a little better and had a bit more colour in his face.
During the following week Simon continued to look a little better, was not quite so tired, although still knackered he was now managing to stay awake past 8.30pm. He still has pains in his arms and groin but they are copeable.
I had previously wondered by dismissed if Simon suffered from Sleep Apnea. Its not often that I am awake while Simon is asleep but I had before thought that he had stopped breathing but then I would dismiss it as it started again. One night last week I couldn't sleep and Simon was definitely not breathing properly. On several occasions he took a breath at the same time as me but then didn't take another one until I had started to take my 5th one. He did this several times, at least a dozen that I counted. I then gave him a shove as it was worrying me and it seemed to ease off. Simon is a terrible snorer and when he takes a breath again its a really, big snore!
So now it looks like there may be another issue too. Simon rang our GP yesterday to fess up to the self medication and to speak about the possible sleep Apnea but our GP is now off for goodness knows how long. We have been passed to another GP at the practice who is just as good and very caring. He has asked for us to email him a timeline of what has happened and to fill in the gaps which we are doing tonight.
It just seems never ending, fingers crossed it will get sorted out soon as its now way beyond a joke. I still think that Simon is on a very low dosage of T3 but time will tell if its enough or he needs more. One thing we do know is that he will not be going back on T4 again!!!
Thank you for all of your advice last time, it was greatly appreciated
Doc names edited out by Admin