Hi everyone , I posted about going to see my endo the other day. I showed him my results and pointed out my t3 was in lower range but he said he wouldn’t give me it unless it was out of range which is no surprise. I told him I was changing doses every six weeks and it is getting ridiculous. I told him I’m scared to book a holiday with my family because I never know how I am going to be. I think he’s trying to kill me 🤔 he said it does seem that I can’t find the happy medium and thinks I need to be on 112mcg. So he said add up seven days of 112 which is 784 and take that all in one go once a week. He sat back in his chair and waited for my response. I was shocked and told him I wasn’t comfortable doing that. So I’m the end it was ME who suggested taking 100 and then in the third night taking 125. He said I have to go back to him in four weeks and have my thyroid checked and he will do my t3. He said if he sees the t3 is still lowering he might consider prescribing it. So he can prescribe it if it’s still in range... he contradicted himself
Been to hospital today: Hi everyone , I posted... - Thyroid UK
Been to hospital today
Sounds a bit clueless! Can you post your last resultsand the ranges. Ranges are very important asthey differ from lab to lab. It sounds as though he could be changing your doses on what is happening to your TSH but looking at your actual results will put us in a better position to help you.
Hi I posted my results a couple of days ago . I think you will see then if you click my name , I can’t find an option to post them here x
Just type your results with ranges - TSH, Free t4, free t3. That's hardly any typing.
Wow .. okay. I didn’t type it because I figured the lady would want to see antibodies ect but hay ho
Thanks for reminding me, I usually check! Not on the ball today!
At least he hasn’t ruled out T3 completely !
You could say bloods may look alright to him but You can say “ i can assure you I do not feel ok, my quality life is not good, it affects my well being and affects my family life when I am left unwell they also suffer as I can not function some of the time and it really isn’t a life I’m just exsisting , I do not feel right and would really like a trial of T3 to see if I can get my life back I am unable to function at times and therefor I am far from feeling well and normal”
You could tell him it maybe you have the Dio2 genetic fault many of us have that
I had to pay for my own test and I had to pay for counciler to explain results. But they are quite easy to read you just put your own email where it says Drs email . Do not pay for counciling as if you put results on here many of us understand it and help you with the result 
It’s letter (D ) the letter ( i ) the letter ( O ) and the number ( 2 ) Dio2 genetic fault.
They have a bit about it all n Thyroid.uk main page
But you could ring your Endos Secretary to see if they will pay for the genetic testing.. Exeter hospital pay for the testing so if they can others probably can !
With the genetic fault your bloods would look ok but you feel far from it! With this fault most need T3 to feel better, I have one faulty gene Dio2 heterozygous which means I inherited it from one parent, I take T3 now and my quality of life is much better I do not ache like I did when on T4 mono
I paid privately with regenerus about 130 but that included the counciling , So 69 of that was for for a councillor and I actually think I wasted 69 quid as results easy to read ..
good luck on road to recovery
When you post blood results someone will come and tell you if what your Endo says is right or not.
The way he suggested you take all tablets in one go is designed for use on non compliant patients who forget or who are dreadful at taking daily doses so if you take your meds every day this isn’t for you! . I certainly wouldn’t like to swallow that much of T4 in one go that’s for sure!
Yeah and he said to me I can see that you take them regularly this isn’t the problem so why he suggests that I have no clue
Thank you for the advice on what to say to him x
Oh NickyUk , sorry you going through all this. Just wanted to wish you well🙏🌷🤗 HUGS
Hiya, I also can’t stabilise my TSH since I had my daughter nearly 18 months ago. I am now on alternate doses 125/100 but TSH has now crept up again. I hear your frustration! No one seems to know what to do anyway. It seems the only way is to take matters into our own hands 😬
Glad to see you recent one. Sadly TSH and T4 don't tell us much as FT 3 is needed to the same time. If you have a high FT4 level and feel great then yes you could have high FT3 reading but you are posting on hear because you aren't climbing mountains but just looking at them wishfully so that suggested you aren't converting well. And in all probability your FT3 will be low and if he panics with that high FT4 he will want to reduce your FT 4 which in turn will lower your FT3 even more so you will want to stay in bed and not even look at the mountains!
So refused any reduction until they do a full thyroid panel with an FT3 reading and get hyper bloods taken early in the morning 24 hours after last dose and also fasted. This will mean your TSH will be at its highest and hopefully he will then realise there is something wrong and he must not lower medication any more. So that would suggest a conversion problem. So to correct that you need to test Vit D, B12, folate and Fermin and you need them to be optimal not just in range. Check on SeasideSusie's posts for optimal ranges and how to achieve them. More of us have to take supplimentsxto help our thyroid work better and it can take time depending how many are low and how dire they are. But you can reverse your conversion problem. Mine took me 5 months but as I wanted to go back to NDT it worked well for me and I switched over with very little problem. Sometimes just adding in T3 your body won't like it until you get better levels so best to look at supplements fist and then on Levo you can check if they have done their job. Once taking any form of T3 results are read differently and you can no longer tell about conversion. After going down this avenue you may find you need a very small addition of T3 but as cost is very high you are more likely to be prescribed if you don't need much.
I have reviewed many studies that show a 7 day dose in one day is almost as effective as daily dosing.
google.com/amp/s/www.endocr...
It worked for me when we not able to get the correct daily dose. For example I needed an amount that was not readily available and a weekly dose made this more obtainable.
That being said, I also had to change from T4 to T3 only becouse my labs would not balance out. I am on month 8 of the switch and I am feeling better. Be aware that even with the T3 only, you willl have a long year or two of finding the correct dose. Also, I had a really hard time, lots of adverse effects, so far during my 8 month transition. The first month was critical and hard; I had T4 in my body I was working out and ladded in the more potent T3 at a lowstarting dose. I was plagued with nausea, headaches, insomnia, extreme fatigue, abdominal pain. This lasted at least 2-3 weekend until all T4 was out of my system. Then I went to extreme hypo symptoms since I was at such a low dose of T3. Each month is has been better....but it is FAR from easy. Wish you the best.
Endo has suggested DEXA scan due to suppressed TSH 
Hospital scare
New Hospital appointment on Wednesday.
