I saw an endo at Hull Royal on the 4th August. He was quite helpful. My husband and I talked to him for over half an hour. I told him about all the symptoms and problems that I had had since late October last year.
He told me that I had symptoms of both Hypo and hyper thyroidism. I told him that I had tried to reduce lio twice this year on orders from two different doctors. He told me that I must not reduce my current meds of 3 x 20 mg lio and 100mg levo. He said as I had been so ill twice there was no point in my trying to reduce meds in any case. I asked him, very specifically, would he put that in a letter to my doctor. He said, "Yes." I asked him about whether he thought my low but within range vit D, Vit B12 and Ferritin could be causing problems with absorption of my thyroid meds. He said that he did not know and had not heard that before. I thought that was a bit disappointing. On the whole I was happy with the meeting. It is a big thing for me that my doctor will no longer insist that I reduce lio. ( or so I thought!)
I was told it would take 2 and a half to three weeks to get the letter to my doctor.
After 3 weeks when my copy had failed to arrive, I contacted Hull to ask if it had been sent. I was told that I didn't get a copy - I had not filled in a request form when I was at the clinic. It's hard to fill in a form when one doesn't know it exists!! After an argument, I was told if the doctor agreed I could have a copy.
Yesterday my copy arrived.
The letter is completely different to what was discussed and agreed at the clinic.
It states that I have, " long history of problems with her thyroxine replacement" This is in spite of the fact that I have had no problems for 8 years up to last October. Then, no mention of me being hyper and hypo. He states he explained the risks in being over medicated - true. He then says that he explained to me that I do not have any absorption issues - not true, he was willing to accept this was a possibility stating only that he had no knowledge of this. He did state in the letter that he had no objection to me raising B12 and vit D ( no mention of ferritin which was my big concern. )
What has made me really angry is his final paragraph, "My recommendation to the patient was to reduce the liothyronine gradually to maintain blood levels of Free T3 and Free T4 in the normal range and TSH in the lower half of the normal range."
He then stated my wish to remain on my current doses of lio and levo even though I know the risks.
Where does this leave me?
We drove over 100 miles to see a consultant only because my GP said I had to. I thought the visit went well. How could I know that it would take the endo a month to write the letter to my gp and that he would change his recommendation.
It was worse than a waste of our time. It has left me very worried. The endo was very definite to us at the clinic that because of my severe hypo as well as hyper symptoms I must not reduce lio.
He did use a formula to calculate how much lio and levo I should be on in total. He then said, "Your levo MIGHT be a LITTLE high." Even after saying that he was definite that I should not reduce levo or lio. There is no mention of levo being too high in his letter.
His only concession to my symptoms is to state at the end of the letter," The patient is very anxious about doing the same ( reducing lio ) due to the fear of the multitude of symptoms she gets on reduction. She wishes to continue on the existing doses having understood the ill-effects of over replacement."
Will my Gp be happy to leave my meds alone after seeing this letter? I get really stressed every time I see a doctor because I know he's going to tell me to reduce lio. I get really ill after a couple of weeks. Last time I got severe chest pains and breathing difficulties.
Anyone else had this problem with an endo?
Can anyone offer me any advice?
Thanks for reading this.