Thyroid UK
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Endonob part 2!

I posted the other day about an endo cancelling my appointment with him as I wouldn't stop my Levo. For those that didn't see it he said because I was "borderline" I probably don't need medication and that was why I felt unwell.

I know I should forget it but it's really niggling me! I looked him up online and he has 5 star reviews and it got me thinking maybe I was at fault, so I have a couple of questions.....

1. If I had stopped my meds as he requested, how was he going to determine whether I needed it or not? Surely not just the TSH test??

2. Was I right in refusing to stop the meds? (I have antibodies of 1100+)

3. Can taking Levo ease constipation or is it more likely to be because I am now gluten free?

Many thanks :-)

7 Replies

The people who have given him 5* may be lucky enough to be fine on levo and have none of the adverse reactions some of us have on this forum. Those of us who are 'difficult' still want to be made well. As far as I know if we have antibodies which shows there is an attack going on so we take levo to dampen them down. I have also read from others on the forum that going gluten free has helped lower their antibodies. If levo has helped you I, too, would be reluctant to stop it. Obviously most of the Endos don't have a thyroid gland problem otherwise they may be more sympathetic, besides the TSH cannot disclose our suffering, be it at 0.01 or 100.

Dr Toft says that people who have antibodies should be given levothyroxine.


I can't answer all your questions but I have recently begun taking Levothyroxine again and have noticed that my constipation has eased. I have cut out some gluten but not completely. From all the research I have been doing (lots of it from here) I know that I never should have stopped medicating, so agree with Shaws.


How do you know he hasn't got all his friends and relatives to leave 5* reviews for him? Lots of manipulation of ratings goes on on the internet.


Thanks Shaws that puts my mind at rest. I was beginning to doubt my own body!

Rebekah just out of interest why did you stop taking Levo? I didn't get along with it at first but things have settled down now (I hope) but it's taken about a year.

Good point humanbean! He has been out to be some kind of saint which is the complete opposite of how he was with me. I even apologised for the delay in writing back to him, saying my own health had taken a back seat as I had been looking after my mother in law who had just died, and even that didn't move him. A bit lacking in the care and compassion department I think :-(


I wouldn't have stopped mine - whatever I was taking! A doctor once wanted me to stop my levo for six weeks so that I could have a scan or something. I had a very high TSH and low frees, and very high antibodies. And palpating my neck showed I had a very, very small gland. I said, what more could a scan tell us that we don't already know? I am hypo and need replacement hormone, end of! He dropped the subject.

I think they just like experimenting on us. I didn't feel very well on levo, but I knew I would feel a damn sight worse without it for six weeks!

Well done you for refusing!

Hugs, Grey


Thanks :-) This guy is actually a professor...scary isn't it?!


Certainly is!


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