going to see a private endo next week

[ziggygirl]

hello im new here, after years of unbearable symptoms,weight gain, depression, joint pain, feel like im fighting a losing battle with my gp, keeps upping my levo, feeling worse every day, so im going to see a private endocrinologist next week, would love to try ndt but doubtful if he will prescribe it. could someone pm me where I can order it on line or give me the name of a doctor in Scotland that prescribes it? any advice would be appreciated x

[SlowDragon Administrator]

Have you got full set of blood tests to take with you? Total t4 , ft4 and ft3 as well as TSH

Have you had B12, vitamin D, folate and ferritin checked. They need to be at good (not just adequate) levels for thyroid hormones to work. If they are not adequate, then your thyroxine can not be used in the cells.

could your GP do these? Have you had antibodies checked? Both TPO and TG need checking. If either or both are high this means you have Hashimoto's- the most common reason for being hypo

Many of us have poor nutrient levels either due to low stomach acid or gluten issues.

Many Hashimoto's patients find absolutely 100% gluten free diet can lower antibodies and reduce symptoms. (You don't have to have any obvious gut issues to still get benefit) apparently Hashimoto's can have a leaky gut connection. Then gluten molecules can incorrectly cross from the leaky gut into blood stream. Apparently these gluten molecules are very similar to thyroid molecules, which then antibodies are sent out to attack the gluten (and thyroid in error)

[ziggygirl in reply to SlowDragon]

thanks for the info, my doc only gives me my tsh result, only got my anti body result when I was first diagnosed 3 years ago, I know tpo was high then, but if im honest I didn't really understand it all, im just learning from research. I don't think my gp tests my blood for all the things you've mentioned, but im going to ask the surgery to print out my last bloods, which were 3months ago. il take them with me to the endo. many thanks

[Marz in reply to ziggygirl]

Hope all goes well with the Endo. Is he/she a thyroid specialist ? Many deal with diabetes and seem unfamiliar with the workings of the thyroid.

[ziggygirl in reply to Marz]

the endo im going to see is a thyroid specialist, he is supposed to be good, but il find out for sure when I go on Wednesday, I just hope theres light at the end of the tunnel.

[TupennyRush]

Hi there

I found that my private endo was happy to prescribe ndt. I went prepared with papers and my test results for di02. Handed it all over. He asked what was I wanting and I replied ndt. He stated that he had no problems with it, saw that it worked for some people, agreed I needed either ndt or t3 and prescribed it on the spot.

He also said that he wasn't allowed to prescribe ndt when he was working in the NHS (he practices mainly in the NHS) so it was handy that I'd gone private.

He started me on a grain and I moved up to 1.5 as it wasn't quite the right level for me. He also tested hormones, vit and min levels

So I'd suggest asking for ndt and take your research with you. Use proper scientific paper not just print outs of Web pages. Thyroid UK has some good links

Good luck

[ziggygirl in reply to TupennyRush]

I have heard that he doesn't prescribe ndt, but specializes in combining t3 with t4, but I will take some print outs on ndt with me, maybe even getting t3 will help me?

[TupennyRush in reply to ziggygirl]

I don't have personal experience of t3/t4 combo but others on here rave about it as I do ndt. I think everyone is a little different and while ndt is great for me others prefer t3/t4 combo and about 85 per cent are good on levo.

Fingers crossed that t3 does it for you

[ziggygirl in reply to TupennyRush]

if the t3/t4 doesn't work, il have to search for another doctor to prescribe ndt or try self medicating, this sight is amazing, only joined yesterday because I felt so bad that I just wanted to go to bed and never wake up, the advice and stories make me feel that that im not alone, im learning so much, and now I know that im not losing my mind and im determined now to get better even if it means trial and error which treatment will help me,

thankyou all

[meowminx]

Hi, I hope your appointment with the private endo went well. I am thisclose to go see one as the endo consultant that I had have appointments with seem to just be waiting for me to develop diabetes and would not request that I be tested for thyroid antibodies, even though I have asked about it twice and even the nurse at my local GP surgery requested for it (I had Graves' disease in my early 20s and developed hypothyroidism from RAI treatment). I am seeing another endo consultant tomorrow and I will see what he or she says about all this. Fed up with the all over joint pain, spasms and everything else.

I'm on alternate 125/100 mcg levo and 10 mcg liothyronine since last year March.

Thanks for listening and I hope that you are on your way to getting better. x