Well, disgusted beyond belief with what happened this morning on my first appointment!!
When I received my referral letter from the NHS I had to phone a certain number to make an appointment. When I spoke with a lady at the other end she booked me in and also informed me that I would need to take a snack and urine sample as I would be at the hospital for some time. Okay nice and simple and I thought sensible giving me time, it being my first appointment so time would be needed to go over stuff.
Off I went this morning, armed with wee wee sample, lots of notes and info to discuss with my Endo. Half an hour later the appointment was over and we barely touched on anything, although he did have access to my doctor's records on the computer. I informed him what the lady on the phone had told me and I expected at least a minimum of an hour's appointment. He just shook his head saying he had no idea why I had been informed that and appointments are only half an hour long.
I was fuming, as you can imagine after feeling ill for so long. I got weighed, blood pressure taken and height before sitting in with him. I firstly told him how I had been doing everything wrong for the last 10yrs (taking my Levo with milk and my antidepressant at the same time), and corrected it from member's advice on this Group. Since then (as many of you know) I have just been permanently ill with severe debilitating anxiety/panic/palps etc., which bloods keep confirming I am overmedicating
My bloods have shown I am still overmedicating despite twice lowering my dose by 25mcg!!!! As I obviously wasn't absorbing the full 150mcg I used to be on due to taking with either milk or antidepressant, I may have only actually absorbed the equivalent of 75-80mcg. Since correcting that, my body would have been absorbing better and my body has obviously reacted to receiving a higher dose - if you are still with me? So it would seem that by correcting how I took my Levo 150mcg was in actual fact too higher dose for me.
I have lost around a stone and a half in weight (possibly more) since October and that is relevant to what I found out this morning from my Endo (which was never explained to me by my Doc). He informed me that Levo is dosed according to your weight at 1.6mcg per kilo. I am now 61kg. Calculating that, it would put me at a dose of around 100mcg or even less. We went over the doses I dropped to and compared them to test results. He recommended I try 100mcg but I told him even that made me feel overmedicated and brought back the severe symptoms within a week.
When I mentioned to Clutter the other day about my latest very high T4 of 28.20 (12-22), I missed my Levo for a couple of days last week and then started on 75mcg a few days ago, which seem to be OK for me at the moment. Just worried about going hypo now but would rather have those symptoms than the hyper ones I have been experiencing for so long! If I feel the hypo symptoms coming on I could try taking 75/100 alternate days?
Unfortunately we didn't have time to discuss anything else as I mentioned my T3 dropping with my reductions and he really didn't have the time to discuss that with me. He, as I was going to request anyway, is booking me in for an ultrasound which will probably take around a month (if I am lucky) and then he wants to see me in around 2 months! Two months??????????? I could be friggin dead by then the way things are going!!!
I did manage to get my adrenals into the conversation and he wants to do a fasting test for (cortisol - bone - glucose - liver - antibodies to TPO - urea and electrolytes - vit D - FT3 - FT4 - FSH - Lutenising hormone - prolactin - TSH - full blood count and anti TTG
Unfortunately due to the shortness of time and my trying to explain stuff to him I don't really know whether he is any good (although I did get a good vibe from him that he's pretty much on the game with thyroids). Am a little more confident than I was because when I spoke with the practice manager at my local doc surgery yesterday, she explained she has thyroid problems too and she thought they were brilliant and gave me the names of two particular Endo's whom she rated very highly. So if I get no joy with this one at least I have some names to move to......but cm'on half hour appointment, it's a joke!!!
As regards the cock-up by the damn woman on the end of the phone I am going to leave a complaint on the NHS website. What the hell she is doing misinforming people I don't know!