This site has helped me so much. I will write a blog to tell how things have improved and its nothing short of a miracle but...
I am Graves, TT, active TED (very) on 100/125mcg levo.
I phoned the surgery for my repeat prescription and when I picked it up a note attached saying that the Endo who I seen a few weeks back had lowered my dose to 100mcg?
At my appointment with the Endo we slightly disagreed over hyper/hypo problems, he's a good Endo, but at the end WE agreed no alteration on meds for 6 months, on the page he smiled and put => in big letters. So we shook each others hands and I left not too down hearted. So it was a big surprise when I to the surgery. I recounted the same to the receptionist nicely and she said, you'll just have to make an appointment to see the Endo. So I said there was a 3 month waiting list and I didn't want to get ill again by lower my dose. She helpfully called one of the GP's and they said it was on my notes to lower by the Endo. So I have now managed to get the letter and it says.
'Michelle seems to managing quiet well at the moment but complains of lack of sleep and heart palps which could indicate being hyper. It could be argued a reduction in meds'
But I am not hyper, believe me after 10 or more years of being hyper, I know the difference. I suffer more hypo now.
Here are my bloods but.......... this is the best I've felt for years. I've made an appointment today to see MY own Gp, first appointment available 17th December! Please give me some strong medical reason why he should keep me on my current meds..... what a nightmare.
Free T4 22 9-23
THS 0.24 0.55-4.79 abnormal
Free T3 4.7 3.5-6.5
Written by
shambles
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I also have Graves, TT, active TED. I don’t have any scientific medical research, but I do have experience but firstly, lack of sleep and heart pulps can also be hypo symptoms and a million other things.
My TSH has never moved from 0.01 since I was first diagnosed, so that would suggest I need to lower my dose, but my t4 is mid range and t3 at upper end of range which show I should not lower my dose, which shows the TSH shouldnt be used as the only marker.
Same with you, if you go by your t4/t3 results and how you feel then sounds like you shouldn't be lowering your dose so stick to your guns.
In my last appointment my endo said not to worry too much about the test results and to go by my symptoms as people with Graves who have had a TT tend to need to be at a higher level to feel good (i.e. suppressed TSH and higher T3/T4 levels) for at least the first decade after having thyroid removed and that this is fine – he reckons my TSH will stay suppressed until one day, in the distant future, my system might kick back in and I’d need to adjust dose.
It is best to keep your gp/endo on side so if I were you I would take the prescription but keep on taking the dose that is good for you (get a pill cutter) - write a letter to your endo with a copy to your GP stating what you agreed and how you feel and what you want. You may have to chase by calling your endo (or sectary) but you shouldn’t have to waste your time by going in for another appointment – ask your endo to write another letter saying that you can stay on your current regime. I have sent you a private message with a similar letter I had to write.
Your treatment should be a joint decision and not a fight.
hi i hope you dont mind me adding a comment. i have just asked the question as to why my tsh is the same as last year 0.03 but i feel so much better this year.
reading your reply to shambles was most interesting about people with graves taking at least a decade before the system kicks back in again. i wish i could have been better
informed prior to rai, it is 2yrs and 9months since i had it done but it has taken till now to feel normal.sorry to have butted in but thanks for that bit of info x
If you have Hashimoto's, it is a fact you will alternate between hypo and hyper - i do, but according to the NHS it's impossible! I have suppressed tsh since self medicating with ndt and have never felt better. According to my research, many people need to have suppressed tsh to feel well and we should not get bogged down by TSH (the way the nhs does). We should rather be paying attention to our symptoms and out T3 levels. Since ditching the NHS in favour of remaining healthy, i get my own tests through Genova and have found them to be good
I am pretty new to the forum and I never once questioned the NHS/doctors from being diagnosed, operated on and medicated. I just thought you were meant to feel terrible for life! Only from this forum have I realised there are better ways. But I am long way from understanding what is best for me yet.
Hi I have very low depressed TSH, it is the only way my thyroid is OK. I have many lethal illnesses, including heart. I have always been told by my own consultants to just treat the thyroid sufficiently for it to be stable. My TSH is unmeasurable as so low. Not ideal but necessary for me , that includes end stage heart failure. I have never found the treatment effecting my other conditions.However, as I go into hospital a great deal, other docs (not my own) get hysterical about it. Pressure from them terrible. Now when a phlebotomist comes to take my bloods, I ask which ones and refuse any thyroid ones. This is not a good idea but for me it is the only way.
Take the prescription back and demand your normal dose - I did!!
I crashed my endo's diabetes clininc and told him in front of witnesses that he was in breach of NHS guidelines and hospital protocol by reducing my meds without discussing and sgreeing it with me!!
You have to stand up for yourself, no-one else will!!
Hi Glynisose. I think I need to borrow you. I am rubbish at the moment at confronting anything/anyone, didn't used to be. But I'm working my way back.
Interesting though what you say about agreeing meds with me. I did think that at the appointment, so another good thing to go on the list and that's what give me the confidence.
Try phoning the Endo's outpatient clinic and explain what has happened in spite of the Endo agreeing at your appointment to keep you on the same dose.......say you need to speak to him urgently and a letter needs to go to your GP URGENTLY to confirm that you are staying on the same dose at present.
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Needing to vent! 
