Just back from seeing the Endo.

[dizzy1979]

I saw the Endo she wasn’t helpful, said that t3 has not been proven to be beneficial and that Levo was the only thing that will help. She dismissed that I felt better and said the long term effects of t3 that I am sourcing myself could be harmful. She has requested new bloods tomorrow and said I will get a call if anything urgent otherwise they will see me in 3 months. She said that my last bloods in July show I was taking to much t3 and I need to reduce it, yet my gp along with advice on here said I could increase 1/4 of a grain. She wouldn’t listen to anything I said. I Just feel deflated.

[SeasideSusie Remembering]

If your GP is happy with your results and with you taking NDT, and you are happy and feel well enough on it, is there really any need to continue seeing an endo who isn't supportive? Why not ditch the endo and stick with your supportive GP, there is no compulsion to see an endo.

Also, at the risk of sounding pedantic, it's NDT that you are taking, not T3. There is an important difference and to be taken seriously you need to show that you know what you are talking about. NDT is a combination of T4 and T3 from pigs' thyroid. T3 is liothyronine, a synthetic T3 only.

Always remember that when doing thyroid tests the last dose of NDT should be 8-12 hours before test, adjust time of last dose if necessary, and don't take Biotin or B Complex in the 7 days before testing. TSH and FT4 aren't particularly important when on NDT, it's the FT3 result that is important and, of course, how you feel.

[dizzy1979 in reply to SeasideSusie]

Thank you seaside Susie, as always you have made me feel better. I didn’t particularly want to see the endo but the dr said it may be helpful as he couldn’t do anymore for me in a such as unable to offer me anything other then levo. He also said if I didn’t like what she had to say I had no need to go back.... sounds like he knew what to expect!

I did tell her I was taking ndt and showed her what I take, to which she turned her nose up. But thank you for clarifying that ndt was both t3 and t4 I honestly wasn’t aware that it had both, and just assumed it was a natural t3 only. To be fair she wasn’t offering t3 or ndt just levo. Suggesting I should try alternative brands, to which I explained that for 18 years in levo I tried numerous brands. She had nothing but surprise when I told her that my periods were better and I had lost weight without trying ( all be that it was temporary before I fell off the wagon ) on ndt.

I am looking foreword to my blood results because I do feel like I need to adjust my dose of ndt, I currently take 3 grains because I just couldn’t get the tiny pills into quarters without it crumbling, and I have gained a few pounds and has lost my sex drive so am guessing I’m taking to much.

My next appointment would be with the consultant not his assistant like today, so I feel like I may go just to prove a point and see what I am offered? But will see how I feel nearer the time.

[SeasideSusie Remembering in reply to dizzy1979]

Sounds like you know what you're doing and what suits you, such a shame that many doctors/endos are so blinkered. They only have to look at the treatment pre-Levo, but they are brainwashed into thinking it was unstable. Stick to what's making you well Dizzy, it's your life, don't waste it any longer, live it! I would love to turn back the clock, I wish I knew back then what I know now, I'd not have lost so many years of my life

[dizzy1979 in reply to SeasideSusie]

Me too, but we still ha e plenty of years to rectify the wrongs. If it wasn’t for the help from places like this I would never have had the courage to switch. She actually said there is no proof that not or t3 help, intact that could be the cause of my raised heart beat and I must be having palpitations! I told her I had rushed from the car park to the appointment which is why my heart was raised and that I have not had one palpitation since stopping Levo!

[LAHs in reply to dizzy1979]

Yes, sadly you are running into the buzz saw we all go through to begin with. At least you have this site where you can compare your experience with hundreds of others. I am not very medical orientated and it was hard for me to believe that the Endo I first saw was an idiot. I felt so scared, she was supposed to be my life line back to normality (after a TT), but no, she was illogical, had no tenacity to dig into my problem and I was shocked that she would have such a mentality after so many years in medical school with extra education to become a specialist (in Endocrynology). But there it was, a stupid MD. It's hard to get your mind around, we are on our own. I no longer care what doctors (or people for that matter) think about facts. If you deny that T3 improves your health or that you have a nose on your face, who cares. And be careful about their other opinions.

[Angel_of_the_North]

Why do you need the endo if you are sourcing your own meds? I would ignore her as she doesn't seem up to date on current research and go with what makes you feel well. I wouldn't bother going back

[dizzy1979 in reply to Angel_of_the_North]

A tiny part of me would prefer the meds to come via the nhs and regulated. But like you say she is not up to date and def has no idea what is best for me, so I will continue as I am.

[TSH110 in reply to dizzy1979]

You won’t get NDT on the NHS I believe they stopped prescribing it.

[Miffie]

I too source my own NDT now. Originally I was treated with prescription NDT for years. Levo left me wrung out and shattered. Eventually I was so symptomatic my tongue was so swollen I could not eat ( diagnosed as anxiety). I told the young GP I would self source if he continued to refuse me a referral. He did I started on NDT. I now see a senior partner who knows I take it and is happy as long as my bloods look OK. She can only get TSH and T4 done. I use Medichecks for full testing. Would be good if I could get NHS treatment, however after having hypothyroidism for over sixty years I prefer to be well and have to self source and treat, Good luck going forward.

[serenfach]

I am sorry you had this experience, but many of us here have been through the same thing. I recently saw a "top" Endo, and although he knew about NDT, he did not believe in it! Nothing I said would convince him I was feeling so much better on NDT, he just said I had never taken enough Levo to be better. My body said differently!

All the scare stories about NDT are just that - stories. They cannot make money on prescribing NDT like they do with Levo.

Stick to what makes you feel better. I have found if I take 2.5 grains one day and 3 the next, I am OK. I know this goes against some advice, but it works for me. Today I have cleaned out a ditch, moved a very reluctant pig and chopped some wood. Just thinking about it would have been impossible on T4 alone!

Good luck, and a hug.

[Miffie in reply to serenfach]

Yes having taken NDT for forty years prior to being given the dreaded levo, I know exactly how effective it is for me. I have no qualms about it, in current times no GP has had as much experience with it as I have. A different story back in the 1950s / 60s. then GPs were in the know.

I admire your activity levels, by brain is willing but as I am due a replacement shoulder some activities are on hold. Take care.