Endo app 😢

😡 what a bloody disaster of an appointment with endo. Sorry for language but I've got no where, he wasn't interested, made me feel pathetic and told me I'm depressed. Burst into tears saying I've only been depressed since starting levo! He's advised I start anti depressants and if no better after 6 weeks then a trial of t4/t3 so that's something I guess. I flat out refuse anti d's. He refuses to check oestrogen or progesterone, says all my test results are good. Barely looked at the DIO2 test or anything from blue horizon. Said all a waste of money, if NHS don't test it there's a reason, that reason is that they are meaningless. Slated NDT, refused to acknowledge their use, said synthetic far superior. Told me to stop trolling the Internet as I'm getting bad advice. Go and exercise and stop the sugar - never thought of that!

On the other hand he is requesting a few more tests, fasting glucose and something else that I can't remember. Talked about me having CFS diagnosis in the past (wish I hadn't mentioned that). He clearly just humoured me in there. He wasn't nasty as such but I felt he smirked and dismissed my comments.

I feel like total crap, so upset.

Oh it was cortisol he's going to test, blood test (yes I know) and if any issues then further cortisol where I do it over a period of hours.

I'm fuming. £150 for the privilege.

25 Replies

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  • You have every right to fume! Seems we can't even trust private endos to know what they're talking about, now! No better than the NHS! Talk about money for old rope!

    Was he on Louise's list of good endos? If so, write to her, so she can cross him off! Don't want others making that mistake.

    But, you must tell yourself that it was him, not you! So, don't let him make you feel bad. You have it all right, he has it all wrong! Ignorant so-and-so! Bet he's a sadist!

  • I am so sorry Misslissa. So many of us have had similar experiences - it's shocking. So was it a private endo? You mention "£150 for the privilege"...? T4/T3 trial might be useful if you can get it on the NHS. If this endo is private you might be better off just getting T3 from abroad...

    Personally I really don't understand what ends are getting paid for if they are no use to us!!!

    Take care

  • Hi, he's NHS and private. Basically I have just jumped the NHS queue by paying to see him privately. He has said I can now see him faster. T3 would be on NHS. He's not on Louise's list, my GP encouraged me to see him as he's so open to options! Urgh I just don't know what to do.

  • I know this is easier said than done, esp when you're unwell, but try to ignore the comments and focus on the possibility of t3/t4 combo. If this endo can be a means to an end so be it. I don't know why they insist on torturing vulnerable people w their unscientific blanket statements about depression but they do. This is the leading endo experience, I read it over and over here.

    When I refused a second biopsy for lichen planus the dermatologist told me the reason my biopsy site still hurt (biopsy performed by someone else, she had never laid eyes on the incision) was because people who suffer w anxiety/depression report more pain after minor procedures. The skin (on my vulva btw) has fused too tightly where it was stitched, but how would she know that, never having seen it? Depression/anxiety is a godsend to these people as it is a one-size-fits-all dx for everyone.

  • If you can see him on the NHS it might be worth going for an appointment and trying the T4/T3 combo. Given that people are having their T3 NHS prescriptions taken away from them you might be one of the very few lucky ones who are still able to get the prescription...provided that you can let the rest of his b*****t go in through one of your ears and come out through another ;) Personally I wouldn't bother seeing him again privately but NHS appointment won't cost you anything. You sound assertive - well done for declining antidepressants. All the best!

  • Yes, next time would be NHS and he has said I'll now see him faster and won't joking the queue. I'm going to pretend I'm taking the ad's as I truly believe I don't need them.

  • Sounds like a plan. It's so sad we have to lie that we take meds we don't need and want in order to get the meds we need. I do hope you will get prescription for T3 and that the T4/T3 combo will be helpful!

  • You could pretend to take the ADs, then report several of the adverse effects of them and say they aren't working and ask for T4/T3 .

  • Oh misslissa, I'm so sorry. I do wish you'd told me you'd paid to see this man privately, I would have told you to save your money. He's not a particularly well liked endo which is why I was really glad to see his superior until he retired. So far up himself he could be his own tonsils... Even if his new sidekick was a bit green, I'm glad I saw him now.

  • I've calmed a little bit, he said that he would drop me to 50mcg t4 and 20 t3 split into two. Does this sound a good mix?

  • How much levo are you on at the moment? You can't just go onto 20 mcg T3 just like that, you need to start low and build up slowly, or you'll stressyour body.

    That might be a good final dose, but then again, you might need more. Is he open to negotiation?

  • Currently on 100mcg levo. He wrote down 2 x 10 t3.

  • That's a high dose of T3 for someone to start on, that has never had T3 before. Can't help wondering if he's not setting you up to fail. I'm pretty sure they do do that.

  • My endo put me on to 30mcg T3 and 50mcg T4 after being on 200mcg T4 which was not proving effective. However, I had to stop my T4 altogether for a week before starting the new combo and I dropped my T4 to 25mcg shortly thereafter and I've not looked back since. Until he retired this year, he allowed me to adjust my own doses and was happy to continue monitoring me. I was actually getting very worried about having to see misslissa's endo as he did have a reputation for taking patient's T3 off them when my annual review came up last June, but thankfully I saw a new one instead who left my T3 alone (not because he knew anything, but because he was quite inexperienced...) Perhaps this man has one set of rules for private patients and another for NHS ones...

  • Well, you were lucky that you could tolerate the 30 mcg straight off. But, not everybody could. It's too high for a starting dose - even if you were on 200 mcg before. With hormones you should start low and increase slowly.

  • Hi Misslissa, I really feel for you as had similiar experience over here with a French Endo last year. They are all the same and I endorse what others have said.

    You trust yourself, your own 'gut feeling' - think about and research your own health conditions you had before Thyroid diagnosis - you may find some meaningful links there - as well as lots that may not not be relevant. I did! Also check out that there are not similiar ingredients in all the meds you take, if any others - whether or not they conflict - go to drugs.co.uk. - just follow instructions for how and what to do! Good luck and I hope you manage to control things and your health sooner rather than later.

  • So I'm trying to decide what should be my next move, I've got 'thyroid s' in the house, do I just go for it and hope it helps me or do I sit it out on the t4 only for 6 weeks or so and await the t4/t3 combo on prescription?

    I know it's my decision but what would you do? The thought of waiting at least another 6 weeks is pretty hard to think about but I don't want impatience to make me make a wrong move.

  • Well... you could get the best of both worlds. Try adding a little Thyroid S to your levo, to get you used to the T3. See how it goes. Then, when the 6 weeks is up, you can decide if you want to stick with the thyroid S, or go for the combo. You have to try things to know if they work for you.

  • I can't seem to make a decision, I swear this is due to the hypo. I used to be capable.

    If I start something in advance I'm worried they will test my ft3 which will then be decent and the option of prescribed t3 will have gone.

    Jesus I'm driving myself mad

  • Yes, l see your point... But you could stop the Ndt a couple of days before the appointment, to bring your level down.

    But, you're right, it is the hypo making the decision so hard to make.

  • The reason the NHS does not test is money and closed minds.Docs are threatened by patients using the internet and dismissive but its true that there is much rubbish and a person who has found the elixor of life and recommends to all must be treated with caution and even suspicion.

    We are all different ,one size does not fit all.

  • Trustvit was not one of TUK recomended list Endos because if it was make sure they strike him off

  • Nope he's not on the recommended list, I wonder if he would have said different if he had nothing to do with NHS too?

    I guess it's a result he's offering me t3, so long as they don't back out on that.

  • Hi Lissa, I had a rubbish endo appointment recently too. Took an half hour to discount the science about pernicious anaemia and to reduce my levo because I was 'hyper', despite blood work. Best advice I can say is get another opinion :(

  • I can't afford to, I was crazy not going to one of the recommended endo's. Trusted my GP way too much.

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