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.
This is terrible. If you saw the Endo Privately please be aware that the letter to you does NOT have to go to her GP, you can state that to the endo that the letter is to go to you/mum only - I always insist on this with private consultants, then you can provide it to the GP
Can I ask who she saw? please PM me - I can give you some names of 2 seperate endo's that were suggester to myself who apparantly are very good, let me know and I can PM you those
I understand that this forum doesn't advocate self treatment. But with an endo who thinks below range is "low-normal" and a conversion problem that couldn't be more obvious if it was surrounded by flashing lights and whistles, I'd be very tempted to buy some T3 and try it. Easily available online. Don't be put off by that endo disagreeing. It is blindly, plainly obvious from what he's written that he has little or no understanding of thyroid hormones. His inadequacy and lack of knowledge couldn't have been more clearly displayed. He could at least have tried to cover it up, but apparently wasn't clever enough to do that.
He cannot explain why FT3 "is not normally helpful in this situation". Doesn't even explain what "this situation" is, and attempts to cover his clearly non-existent knowledge of conversion by claiming a below range reading is "low-normal". I suggest you write a complaint, addressing this very issues. Above range FT4 and below range FT3. Ask for an explanation of how that would happen. I doubt you'll get one.
I too would not advocate Self Administration with T3 but I get mine from France over the counter Sanofi Aventis no prescription needed and of course Cynomel from Mexico is online. I am a lucky one getting mine prescribed by NHS But its total rubbish so have to get elsewhere !!
But no matter where your T3 comes from you should still have a supportive Endo onboard - I know they are like hens teeth in the UK
Thanks for the answer. I am also taking it (Ampiderm has taken over Mercury Pharma). You should email them to complain. The more people who do the more they will have to examine whatever the use as fillers/binders.
You don't by any chance have the Batch No. and date on yours.
Apologies - what I mean is I fill the script in the UK but use a brand from France. I fill UK script as I need to ensure T3 remains on my notes - I pass it forward if you know what I mean
How's her B12? Low B12 can result in dementia-like symptoms - the NHS damaged by father that way. I'd email Louise for the list of sympathetic endos and GPs and get some T3.
Serum vit b12 was 254 (187-883) at last test end of Aug. At the advice on here I have started her on Methylcobalamin B12, 5000mcg and as her vit d was 61 i am supplementing with Vitamin D3 (5,000iu) daily for 6 wks then every other day. I have also asked that the letter from this dr above does not go to the GP - the secretary seemed quite I surprised when I said it factually incorrect. I hope the T3 I have ordered arrives soon. Do you think I could seek advice (paid) over the phone as most of the good endos are too far away. I would prefer support but if necessary we will go it alone.
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Worried about endo appointment
Endo wants me to reduce T3 and raise T4
Very sick, recommendations for graves endos please.
Neck and muscle pain and feel spaced out despite increase in Levothyroxine 
