Oh, dear, oh, dear, oh, dear. That is bordering on negligence! You’re right, she really, really does not know anything about thyroid!
Let me tell you how it is supposed to happen :
1)You are diagnosed after getting tested for TSH, FT4 and FT3, plus antibodies – to know if you have autoimmune thyroiditis (Hashi’s) – and put on 50 mcg levo, the usual starter dose.
2)Six weeks later, you get a test and your doctor increases your levo by 25 mcg.
3)Six weeks after that, you get another test, and she increases your levo by another 25 mcg.
4)You continue like that until all your symptoms are gone.
5)If you end up on a highish dose – say 200 mcg – and you still have symptoms, she should check your FT4 and FT3 again to see if you are converting correctly. If you aren’t, then you should have a little T3 added to your T4, and tested again in six week’s time.
Of course, it doesn’t always happen like that because doctors are too ignorant, and the FT3 test is too expensive! But, it’s usually a bit better than what happened to you. Keeping someone on a starter dose for all these years, is negligence!
And, none of this is your fault! So, don't blame yourself. You shouldn’t have to stand up to your GP. She’s been to med school, you haven’t, she should know what she’s doing – and if she thinks she’s out of her depth, she should seek advice from someone who does know.
However, this sort of thing happens time and time again in the thyroid world. Doctors are ignorant but think they know it all, and leave patients suffering.
The receptionist sounds a right dragon! She really needs putting in her place! Wasting their time? What the hell does she think they’re there for!
No, they never offer you a copy of your results. Either they like to keep it secret, or they assume you wouldn’t understand – because, you know, all patients are idiots! Even when they’re other doctors! lol
I’m afraid that lack of assertiveness, lack of self-confidence, lack of self-esteem goes with the disease. Most hypos are that way – even if they were confident and assertive people before they fell ill. I think it’s something to do with the feeling of helplessness we feel in the face of such ignorance on the part of the people we trust to make us well – but who actually keep us sick! Plus low T3, of course! So, that’s the first hurdle we have to over-come – because we’re not going to get better otherwise!
You just march straight in, look the dragon in the eye, imagine she’s sitting there in grubby underwear, and ask politely, but firmly, for your results, please, in a voice that tells her you will bridge no arguments. It is not negotiable, but you’re willing to give them a few days to get their act together. I have found, over my career as a hypo patient, that if you put enough conviction into it, they won’t argue.
Same for your doctor. Ask her for the tests, politely and firmly, and if she kicks up, just tell her that if she doesn’t agree, then you will be forced to get your tests done privately, and if the results prove negligence, you might consider taking things further… Don’t know if you’ll summon up the courage to do that, but it’s something to remember for future, when you’re feeling stronger. They are all terrified of being sued! They don’t want the hassle.
One golden rule of life is : never, ever take dietary advice from your doctor – or any doctor, come to that! They know absolutely nothing about it. Nothing whatsoever. Of course, you couldn’t know that before. We think they know everything – lol – fools that we are! So, only normal you would follow her instructions. But, it’s easy for her to say things like that. She does not have to suffer the consequences of being sick and told to exercise more! If she did, she would soon change her mind!!!
And definitely do not follow her advice and take XLS Medical or anything like that! I cannot believe a doctor would tell you to do such a thing! That muck can have dire consequences. You do not want your fat bound. Your body needs fat, and eating fat does not make you fat. I very much doubt your problem is fat, anyway. It’s water retention.
I don’t blame you for disliking your doctor, she sounds awful! And, it’s good to go well armed. But, do not be surprised if she won’t listen to you. She thinks she knows it all, and you’re just a stupid, lying patient - all patients are stupid and lie! You probably won’t get anywhere with her. But, don’t ask her, tell her. Tell her what you want – and why you want it, if you can. She can only say no. Well, she can shout it, actually. lol But, you don’t care, do you! You will not be intimidated! You know what you want, and you will get it, one way or another. The receptionist might not back down, but neither do you!