Re: New here and would appreciate some advice re my test results [2 Attachments]

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Hi SheilaThank you so very much for getting back to me on this, I can't tell you how wonderful it feels to have someone to talk to about all this, from day one doctors have made me feel that somehow this is all my own fault so I have never been very good at seeking support from others and have tried to do my best to cope on my own. My name is Debs by the way, I signed up using my very long suffering partners account, I am so lucky in as much as he is so supportive of me and these never ending problems.I didn't get the ref ranges with my test results so couldn't post those, however looking back over past results over the last year the ranges they are using are TSH 0.3 to 5.5, Free T3 3.9 to 6.8 and Free T4 12 to 22.Last year I had a thyroid antibodies test when I was on T3 it was said to be high - 581.0 iu/ml ref being (<100.0) but again I was told this is normal for someone with my history.I managed to persuade my endo to do the saliva test, I've been going through my papers today and can't find the results, I know she told me they were normal, if memory serves me correctly she said it was hardly traceable and that was right for a midnight salivary cortisol. As far as I understand things the salivary tests should be done at intervals throughout the day thus tracking what is actually happening on a 24 hour basis? mine was done on a midnight and 9am so should I arrange another?I can track a 24 hour urinary set of tests to Dec 2010 which were 24 hour urinary free cortisol 162 (ref: <280 volume 282)24 hour urinary catecholamines: noradrenaline 282 (ref <800) adrenaline 96 (ref <100 volume 283) Aldosterone/renin ratio 256 (ref: <800) - so those were all normal. Apparently the endo said that my cortisol was at the bottom end of the normal range and ACTH unrecordable which excluded any pituitary driven problem.Interestingly at that time when I was on 3 grains of Nature Thyroid and the results (same ref ranges) were TSH 0.1, Free T3 5.4 and Free T4 12.4, does that tell me anything?Yes - endocrine/thyroid problems run in the family - daughter, mother, grandmother etc.etcI had vitamin levels tested when I was in Barts back in 2000 being tested for Cushings, as I recall they were all fine except Vitamin D which was low, I was put on the Calciferol strong dose but no-one ever re-checked, this was supposed to be done in my last blood test but the results have not been sent to me.I did get my hormones tested a while back, I will dig out the results, I know I am low in testosterone, DHEA and something else (sorry can't remember which one!) but no-one thinks this is relevant. I have tried progesterone cream but it made me feel worse.I used to be on Nouvelle but after 20 years they discontinued it and I have changed to Novofem, I am worse on this I don't think any of them really suit me but my options are so limited because I cannot cope with hot flushes on top of the sweating I get anyway - it's a complete nightmare. I am debating asking my GP to find one with the exact same ingredients as Nouvelle on the basis 'better the devil you know'Yes, gluten is not the thing tried it and got myself tested for Coeliac - clear. The problem for me is carbohydrate and lactose - the elimination of lactose has largely resolved the disabling bowel problems.It's funny but the hair loss is the most distressing of all those awful symptoms, I have been managing with extensions until recently but it's getting too fine for that to be a good option and this year I will have to explore either a wig or the hair replacement mesh - both are not the best and very expensive. It wouldn't be quite so bad if this was the only problem I was battling with!Fortunately my GP is lovely, he won't prescribe anything other than the conventional thyroxine but does allow me to talk to him about it all and doesn't judge, always refers me to a specialist and really tries to help within the confines of the way he has to work. I would be sunk without him - but he has no expertise in thyroid, endocrine or hormone issues so isn't able to help in the way I would like. He will prescribe medication that I request as long as it follows the sort of guidelines they have to follow and he doesn't judge me for buying Nature Thyroid etc on line.Sorry if I sound a bit waffly - I have the usual tiredness and brain fog and it's all so complicated, much easier to discuss than write!I think I may try going back on the Nature Thyroid but I don't want to make a mistake as it was my dream to come off medication and I've got so close - but the deterioration suggests that however much I may want that option I'm not going to get it. There is definitely a cyclical nature to this which I thought was only a thing that happened with Cushings not thyroid but I don't know now. I know that my endocrine system is not working properly and never has, but I would hope I can be better than I am now.As for changing the Endo, I've seen so many and none have helped me, I really think I have to do this myself somehow, years of experience has shown me that they are not going to help with this and I have to find my own way through.I'm sorry this is so long and I can't thank you enough for responding, just one day on the forum shows me how busy you are, I'm really grateful for any insight into this nightmare.DebsxPS - Have I responded in the right way? I deleted what you wrote and have responded on the email, please let me know if I need to reply in a different way.On 12 Jan 2012, at 10:58, Sheila wrote:

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