Doctor refuses to treat me - feeling really fed up

Just been for my appointment.

Doctor refuses to treat for hypo as my TSH is 3.4 which is 'tickety boo'. I mentioned if I was in America I'd be treated over 2.5 & that my last test was over 4. But to give me even a small dose of levo would be more detrimental to my health than living the way I am now.

I broke down, I'm still in tears now! It's not like me at all. She's said she'll do them again in 3 months & we can discuss HRT. I had to agree but told her that I'm convinced it my thyroid & not menopause.

She tried to be understanding & said 'I really want to help & I can see how it's affecting you but I can't give you levo knowing it will damage your long term health. I really do feel for you & im sure when I reach that age I'll feel as bad as you'.

Any advice where I go from here please?

Feel free to PM me. Thank you, I'm feeling so fed up now.

26 Replies

  • How patronising! Have you had any other tests done like t3, vit and mineral etc..? If not then my advice would be to get that done privately and post results on here. It may be you have to self medicate unfortunately x

  • I had my own BH tests done back in July & that showed I was above TSH range & mid in T3 & 4.

    Doc only tested TSH & vits & hormones.

    She says Vits are ok - although Vit D & Folate are low.

    She's been saying its the menopause since May. Bloods came back neg for menopause but she said that shows that I wasn't when the bloods were taken & I could well be pri menopausal. I just don't understand the refusal to admit there's an issue with my thyroid. All the symptoms are pointing that way but she seems instant that its the menopause! I'm 43!

    She said she couldn't give me a small trial dose of levo because being hypo wasn't dangerous to my health but being hyper was - so she won't medicate as any dose of levo will send me hyper & that will make my heart go funny & my eyes bulge & that's irreversible - her words not mine.

    I'm so exhausted & confused & just don't know where to turn next.

  • The endo I saw a few weeks ago said if you give levo when you don't need it, can stop your gland from producing the hormone naturally. She didn't say anything about bulging eyes and heart problems. I have hashis and am on a small dose. Having said that the endo I saw was useless. All I can suggest is for you to find another doctor. I have. TUK have a list of good docs. Or ask for a recommendation on here.

  • So she's happy to label you as pre menopausal despite blood tests saying otherwise but has a totally different view when it come to your thyroid!?

  • I know - mind boggling!

    I admit my TSH isn't very high but I feel like total cr@p.

    I feel like just curling up in a ball and never coming out.

  • That's rubbish..we can all sympathise with you as we have all (or are) struggled with feeling like that. I think you are best waiting for someone with a bit more expertise to advise. Has your TSH come down or did you have your last test done privately and this one with the nhs..only asking because different ranges may have been used?

  • Your doctor is appallingly ignorant!!! The bulging eyes are due to antibodies, Graves Eye Disease, nothing to do with over-dosing on levo! Their lack of knowledge is criminal!!!

    As I have said so many times before, it is physically impossible for levo to 'send you hyper'. It just doesn't work that way! This is what I wrote to someone yesterday :

    "When you are hypo, it means that your thyroid can no-longer make enough hormone to keep you well - you have low T3.

    Hyperthyroidism is the opposite. The gland is making too much hormone. You have high T3.

    If the gland is sick, and not making enough, it cannot suddenly perk up and start making too much. That's physically impossible. So, you cannot, technically speaking, 'go hyper'.

    And, taking thyroid hormone replacement (levo, etc), does not have any effect on the gland itself, it doesn't make it suddenly start working better. All it does is replace the hormone that the gland can no-longer make.

    One imagines that doctors know this, and therefore, when they talk about 'going the other way', what they actually mean is, becoming over-medicated. At least, one hopes they know, and that that is what they mean...

    However, where they are wrong is that they take the lowering of the TSH to mean you've 'gone the other way', when all it actually means is that you're taking thyroid hormone replacement.

    They do not understand that it doesn't matter how low the TSH goes, and a low TSH does not automatically equal 'hyper'. It's a combination of high FT3 and low TSH that means 'hyper' - or, in your case, over-medication."

    And, I have to add, that if you do become over-medicated, you really won't like it, and will want to reduce your dose. And reducing your dose is all it takes. You will NOT do anything nasty to your heart by temporarily taking a slight over-dose. No matter how much they try to scare you off.

    Greenfairy10, your endo is right, but he is wrong in what he's implying by that. Yes, if you take thyroid hormone replacement when you don't need it, the gland may stop working. BUT it is not permeant! If you stop taking the levo, the gland will take up where it left off. It will start making hormone again. The thyroid is not like the adrenals. The adrenals will close down permanently if you take too much cortisol. The thyroid will just go back to work when necessary. And, I've had personal experience of this.

    And, this is the proof that they are taking us all for one huge, long ride! The thyroid gland cannot 'close down and stop making hormone' AND, at the same time, 'go hyper'! How is this possible? It's one or the other. But a doctor is capable of coming out with both in an effort to scare you off starting treatment. And, we - gullible fools that we are - think oh, they must know what they're taking about (well, in the beginning we do, anyway). But they don't! They just make it up as they go along!

    So, ladies, take no more nonsense from these idiots! You know when you are ill, you know your own bodies. Insist on what you want to make you well!

  • Aw Greygoose I could have done with having you with me today. Thanks so much for your input. It was actually my thread that you posted on yesterday.

    I think I'm going to look into self medication as I can't be like this for another 3 months. I start another thread asking for advice.

  • Oh, sorry! lol I rarely look at the name of the poster - and if I do, it doesn't stick in my fish-brain!

    I think your doctor's behaviour is criminel! Worse than average. So, who could blame you for self-treating. But, I don't think you've made it clear in your post what you're asking for. I take it you're asking for sources of NDT or something, yes? But, you don't actually say that.

  • Haha no problem.

    I don't think I knew what I was asking for this morning. I got myself into such a state. I felt like a naughty school kid in the headmasters office.

    Every time I came back to her with a counter argument she came back with something else, so I was just hitting a brick wall.

    She seems determined that I'm not right about it being hypo & that she's right about the menopause & the only thing I could get her to agree to is more tests in 3 months & I think she only agreed to that because I started crying.

    That shocked me too - I'm not a crier at all & I was so disappointed, frustrated & exhausted that I just broke down.

    I'm just after something that will start to make be feel better & sort my symptoms out.

    Sorry if I'm sounding a bit needy but I was under the impression the GP would see how it's affecting me & sort it out!

  • No, you're not needy at all, you're sick. And, one does expect that a doctor will do something to make you feel better. After all, that is supposed to be their job! And yes, most of them do make you feel as if you've been called into the Head's office for a reprimand! And, that is not their job!

    But the fact that she came back at you with an argument every time you raised a point, does rather show that she's making it up as she goes along. Doctors just hate diagnosing and treating thyroid or some strange reason.

    But if you decide to go down the self-treatment route, you would be best sorting out your low nutrient levels first, so as to make the most of the hormone. Are you supplementing anything at the moment?

  • Thank you, I was starting to believe you were supposed to feel like this as part of getting old.

    I 've been supplementing with Jarrow Methylcobalamin B12, 5000mcg & Jarrow Formulas B-Right Complex (upon your & suzi advice). My b12 was 256 on 27/07 & it's increased to 1,295 by 30/9. I'm coming to the end of the 60 tablets so I'm going to lower the dose to 1,000mcg.

    Folate was 13.41 (10.4-42.4) on July now 4.91 (5.4 - 24) so I think that needs addressing.

    Vit D wasn't tested in July but is now at 61 (50-100) so again this probably needs addressing.

  • Don't worry about crying, a lot of us have been there, including myself. it's awful that you have to get to that stage, for the doc to even listen.!

    Oh one more thing I've been told "you're depressed, you're going through the change, it's your age, I think your menopausal " so many times ugh! None were true ! Don't believe 'em

  • Thank Rennixon.

    She did ask me last time I saw her if I was depressed & I told her in no uncertain terms I wasn't depressed just exhausted.

    Why are they so scared of the thyroid? Do I need to be crawling in for her to do anything. The funny thing is she said levo would make you feel better but long term it would do more damage than good!

  • You're very welcome

    I'm very sceptical about anything they say now, which is sad, we should just be able to trust them 😟

  • Well, that's just rubbish. Why would it do 'more damage than good'? She really, really has no idea what she's taking about.

  • greygoose thank you so much🌺

  • Justliloldme , can't you just try to find another Doctor? I wouldn't want to go back to that one!

  • Justliloldme, I know it's hard and very demoralising but stand your ground with this GP and request a referral to an Endo. I used to have one like her until one day I pointed out in no uncertain terms that GP stands for general practitioner and not 'expert'. At that point, after ten years of struggling to be heard, I felt that I was more of an expert than her due to all the research and study I'd done in desperation to heal myself. I told her she was nothing but a glorified referral agent, so why didn't she just do the job she was capable of doing and put me in the hands of somebody who knows more about my problem. I was very naive back then because I've since learned that Endos are much the same. Needless to say, I'm still struggling to gain back my health but I did eventually find a GP who trialled me on levo, got some relief of symptoms but then she retired two years ago, which has left me high and dry and stuck on a low dose. Anyway, the point I was trying to make was, don't take no for an answer. She's supposed to clinically evaluate your presenting symptoms along with blood test results 'for guidance' only. That's what is stated on the NHS Choices website, a diagnosis should not be made from blood tests only. Good luck, I'm sure there are many others on here willing to give you support and help where possible. Take care x

  • She did offer to refer me, but followed it up with 'they're going to say exactly the same as I'm telling you' so at this point I wasn't thinking straight & didn't take her up on it - maybe I should have done?

    It sounds to me that there a very little medical professionals who want to help.

    Thanks for your reply - I feel more supported on here than I did at the doctors. x

  • You should go back and tell her you've changed your mind and wish to take her up on her offer. You may be lucky to get a good Endo and she'll be so surprised, but she can hardly go back on her offer now can she !! She doesn't know what you'll be told by another health professional so that's a very sweeping statement in itself. I'd love to go see her with you, she wouldn't stand a chance lol x

  • Now I've calmed down I'm going to do just that. I'm not going to bother with another appointment, I'm just going to drop a letter into the surgery - thanking her for listening to me & that after further thought & discussion with my husband I like to take her up on the offer of a referral to the endo, as we've decided that my symptoms are having too much impact on our family life.

    Thought I'd try being nice, she was actually trying to be nice, albeit clueless at the same time haha

  • Yes, I had a GP that I bullied into referring me to an endo (lol), and the GP said, well, I'll refer you, but he'll only tell you the same thing as me! Well, the endo didn't! The endo was horrified at the way the GP had treated me, and said he would write him a stiff letter! lol I don't know if he did, but it was nice to hear.

  • 'glorified referral agent'. Superb retort!

  • Thx lol, I'd put up with a great deal of patronising sarcasm at that point so my patience had ran out. I'm often asked by friends if I sleep in the knife drawer lol 😁

  • My TSH went to 10.9 and i was never offered anything or even told a had a thyroid problem so put the symptoms down to the menopause it was 13 years before they started treating me.

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