Here is the letter from a recent visit to a private endo. I really gave him a hard time and thought we had reached an agreement - this letter is not what I expected.
Mrs xxx was brought to my clinic at The Hospital today by her daughter seeking further advice on her management. She is currently in agony with pain, tingling and numbness of her arms, burning all over but mostly her buttocks and understandably walking is a struggle. She is agitated ++, can’t sleep, is constipated needing an admission to the A&E department for her bowel clearance. Clearly her quality of life has been badly affected and her daughter, who is trying her best to support and look after her mother, is increasingly concerned about her mother’s illnesses.
Her memory is not great. She has an appointment at the dementia clinic shortly which is advisable. She has been seen at the pain clinic in the past. She is currently on Levothyroxine 125mcd/day has had a blood test privately on the 24th September 2014 at the Blue Horizon medicals revealing a raised Total T4 at 174 nmol/L, raised Free T4 at 28.3 pmol/L while TSH is satisfactory at 1.54 miu/L and Free T3 which is not normally helpful in this situation, was low-normal at 2.9 pmol/L. Given her high Free T4 level it would be advisable to drop Levothyroxine to 100mcg daily. Her daughter has researched the internet and feels she is convinced that her mother’s symptoms are largely related to a conversion problem of T4 to T3 and was seeking a trial of T3 therapy .I have spent a considerable amount of time discussing and advising, highlighting her symptoms that are largely due to her severe osteoarthritis and osteoporosis especially of the neck given her weak upper arms and burning sensations of neuropathic nature. Her agitation might be due to over replacement of Thyroxine but equally early dementia should be addressed. I have suggested taking Fybogel initially 2 sachets twice daily, increasing the dose until her bowel movements are satisfactory.
I have reinforced my clinical judgement that symptoms are largely related to severe osteoporosis and osteoarthritis with possibly early dementia that should improve with symptomatic treatment and there is no place for T3 therapy in her case. She is due to be assessed by another endocrinologist shortly, to have the opinion of a second Consultant is welcome.
What a total farce. This man lied to me. Saw him privately at the weekend as a last resort. He said that if we tried his suggestions about pain relief for 6 weeks he promised me that he would try T3 - this is not what he says in this letter! Also he is wrong on several other counts. He describes T3 as low-normal (range of 3.1-6.8) really is this low/normal?? He also says she has severe osteoporosis - despite me saying its osteopenia and the severe pain is not likely to be caused by this. No mention of the flucturating TSH and T4 over the past two years - and being continually told to change levels of T4. He and other professionals seem to want her to be labelled with Dementia, it is easy for them and also for us to be seen by another endo it gives him the problem of the T3 issue . I am rock bottom and my Mum is going crazy with the pain/weakness. I feel I have no choice but to give up on the T3 route. I have ordered some and was going to try but feel maybe I am the only one who actually thinks her issues are due to this. Feeling really deflated.