Absolutely Outrageous

I have recieved a letter from the endo saying "I have tried to explain that there is nothing further that I can offer her, which is very difficult for a doctor to say to a patient" -Difficult for her, what about me? I was diagnosed years ago as Primary hypothyroid, and all they can offer is T4 or T3, absolutely nothing else, no suggestions or help for me, just left out in the cold, suffering and pain worsening, in the letter my concerns were listed but ignored as if I hadn't said anything.

What is the point of an endo, and why does she want to see me again. Nothing makes sense anymore.

I am not a happy bunny and have made an appointment to see my GP and discuss it - but I am sure they will all just stick together.

I feel so angry and upset

We all deserve better than this

Thanks for listening

38 Replies

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  • That's really frustrating. I would talk about it with your GP and your endo. It's not okay to be treated like that. It's very simple to them, they are not the one that are suffering. So they write a note and go to te next patient.

  • Thank you Flower3, I am not sure now, maybe I should except that I won't get any help and put what energy I have in finding a solution.

  • Honestly, Kitten, I think that might be a good idea. They have very limited knowledge of thyroid and the nutritional deficiencies that follow; know nothing about adrenals and pituitary; and are very quick with the antidepressants and referals to a psy! You really might be better off on your own, except for any blood tests you might be able to weedle out of them. But don't expect them to come up with any revolutionary ideas, because Dr House they ain't! x

  • Hello Greygoose,

    I just can't face them any longer, what needles me the most is they do not even try.

    She has said I will not ever get better, how does she think that makes me feel? does she even give that a thought. The medical profession are a joke and not just with our condition either.

    Their tests are meaningless, even the Gluten Blood test, but if we keep going back to them, in the hope that one of them will be slightly helpful then they do not have to change. Iritatiing the lot of them, clueless and over paid.

    Best wishes

  • I know how you feel, Kitten. They do say some very hurtful things at times. One I went to started talking about herself, rather than me! And ended up by saying "But of course, I've always been nice and slim. Not like you." I don't mind admitting, I cried. I was feeling very down that day, and had spend two hours travelling to see her by train and bus, and then she says that to me. Did she think for one instant how that would make me feel? No. She had no idea. She was way too far up her own backside to have any feeling for me. I never went back.

    And she was a private doctor who came highly recommended! (She told me to live on boiled carrots and rice and drink soy milk if I wanted to get better. Charlatan or what?)

    But I digress. I sometimes think they don't even see us as human beings. We're just stupid lumps of meat on a conveyor belt.

    But she doesn't know what she's talking about. Just because she can't make you feel better, doesn't mean no-one can. They don't try because they haven't a clue how to, and are possibly scared. It's difficult to face up to your own inadequacy.

    You have every right to be angry and upset. Get it off your chest - scream it from the house-tops! Then, start researching for ways to make yourself better. You can do it, I know!

    Hugs, Grey

  • Thank you so much Greygoose for your positive words - that makes all the difference.

    What a nerve the endo speaking to you like that, to make you feel like that. They get away with too much and being private as well - it's just unbelievable.

    My acupuncture starts tomorrow and I will continue researching until I do everything I need to so I get well.

    Thank you greygoose, I hope you are proving her wrong

    Best wishes

    Debs

  • Well, I've lost a lot of weight, but it wasn't by eating boiled carrots and rice, and drinking soy milk! I love both carrots and rice, but I couldn't live on just those alone!

    I love acupuncture! Unfortunately, my local acupuncturist retired, and I've never found anybody as good as him. It used to be a real treat afternoon, going for a session. He was a lovely man and we used to chat about all sorts of things, and I'd come out feeling like a new woman! lol Refreshed and pain-free. Hope you will feel the same. x

  • Hello Greygoose,

    Not long had my acupuncture - he seemed keen on trying to help # : > and recommended I started taking 10,000 IU daily of Vitamin D, I will be having one session a week for six weeks to see how I respond and go from their. He said he was excited and hopeful he could improve things - he also picked up on the anger I have towards the doctors.

    That's great it helped for you, maybe you will find someone who is as good as your local one : >

    To feel pain free would be fantastic - I will look forward to that x

  • To be honest, taking vit D, magnesium and zinc helped the pain more than the acupuncture. But don't leave me as relaxed. Would be a good idea to take magnesium and zinc with your vit D. Ask him what he thinks.

  • Will do, I just hope it helps - six sessions is a lot of money

  • Too right! :(

  • You poor thing, it is so demoralising isn't it. I know going private incurs extra money but that was the route where I got the support I've needed. I got the list of doctors through Thyroid UK and took out a personal healthcare plan to help towards costs (taking the plan out well in advance before any appointment or treatment commenced, otherwise they won't pay up if you've already embarked on treatment with a doctor/physician). There's also the bonus of having other therapies covered on these healthcare plans e.g. eye tests, osteopathy etc, which I find very useful. I found going down the NHS route like banging my head against a brick wall. It was time consuming, frustrating and stressful - just what you don't want when you feel really ill. It also has a limit to what it can offer and going private tends to open many more options for you.

  • Hello HEA72,

    Your so right, it is demoralising, I feel very annoyed and stressed. That was a fantastic idea - I hope you are well. I did see Dr P - who wasn't sure what to do for me, also saw a private Nutritionalist who said he couldn't help and now two Endo's, one saying I will never get better.

    I really can live without that, I got so stressed out by that and now my health is suffering again - it takes me so long to bounce back from stress.

    I don't understand how they can get away with treating us so badly

    Best wishes

  • I agree with Shaws re getting some blood tests done. In fact going from my experience get as many blood tests as you can even if you choose to go private, so that you can save money. Otherwise you may end up paying for blood tests that you could've got free through the NHS. Going private will offer you more test options, so take advantage of those but get what you can through the NHS just before you go private, so your NHS blood tests are up to date to take with you to the private physician. I am surprised that Dr P didn't know what to do to help you. Does he also offer the 'ATP profiles' blood test? If not, this maybe why he came to a brick wall about what else to do for you? It may prove helpful for you. You won't get this through the NHS. I had this done with my private physician and it gave a more holistic view to my lack of energy/health at mitochondrial level. You can find lots of info about this through Dr Myhill's website: drmyhill.co.uk

    Don't worry, there are plenty more options out there for you. Unfortunately the NHS isn't a one stop shop. So you may find out you can't put all your eggs in one basket there and hope to get better. It works for some but not all of us, which is what I've found out. In fact I don't think any singular place is a one stop shop. Getting help from all realms usually gives us a more holistic healing process.

    Good luck. :-)

  • Thank you Hea72,

    Lots of helpful info - thank you so much. Everything you say makes a lot of sense to me. I honestly feel that my diagnoses is incorrect.

    The medication has done such damage and the fact I can barely take any of the medication suggests to me that maybe the problem is not actually the Thyroid at all. Lots of symptoms can over lap and many things can also effect TSH, before I had the medication I did feel unwell and sluggish but about 6 weeks after being on it everything went mental and four years on, I still haven't managed to calm things down, but I can not go without the medication now, or I can barely walk.

    I so wish I could have some help to explore other possibilities other than them blaming everything on the Thyroid.

    I have my first session of acupuncture tomorrow, I will happily try anything, including tests # : >

    Best wishes

  • Which area do you live in? I'm only asking because I have another suggestion that may help. :-)

  • I live in Suffolk, but very happy to travel : >

  • K-W, Difficult for you to hear but honest, and perhaps, ultimately helpful. Clearly there's no point in continuing to see someone who has said they can't help you and your discussion with your GP should include requesting referral to someone who thinks they may be able to help you. Ask your GP for recommendations but say you would like to check them out before GP makes a referral. Ask louise.warvill@thyroiduk.org.uk for the list of endos recommended by members. You can post the endos' names for feedback but ask for responses via private messages.

  • Thank you Clutter

  • You are quite correct. It is 'take it or leave it - it's up to you' when they are supposed to be the 'experts'. It is outrageous - no other word will do.

    Some people cannot get better on levothyroxine - even with the addition of some T3. Most wont prescribe T3 alone. They wont prescribe NDT and I think at least we should be able to trial different medications as what suits one person doesn't always suit another.

    Do you, by any chance, have a print-out of your latest blood test results. If not ask your GP to do a Full Thyroid Function test which includes Free T3 as your T3 might be too low if T4 is not converting properly. Considering it is T3 which is the driving force, why do they neglect to test it?

    What a cheek she has as if its all your fault! It really is amazing.

    Are your vitamins/minerals good. Also Vitamin C can help the conversion of T4 to T3. I do pity people who have no recourse to the internet at least we can get things off our chest and some sympathy.

    thyroiduk.org.uk/tuk/treatm...

  • Thank you Shaws, I am just feeling so annoyed and stressed. My pain is getting worse and now I am taking a lot of painkillers to get some relief. I asked about the chest pains, high pulse and other symptons that concern me and was basically told that it was all down to my Thyroid - so that was that.

    I did ask what my results were and she said "exactly the same as last time" which was FT3 & FT4 were in range but TSH was about 10 or 12.

    I do take lots of vitamins but no tests have been done for years.

    I pray she is wrong and that I can get better, that has made me feel miserable - I wish she hadn't said that> I think I will stop seeing docs/endo's all together

  • Its definitely time you got some more vitamin and mineral testing done - the usual suspects, iron, ferritin, folate, vitamin B12 and vitamin D to start off with.

    If you've been supplementing for years but haven't had any testing done, then perhaps you have an over-dose/toxicity problem, or an under-dose/deficiency problem.

  • Thank you Humanbean, If i didn't hate doctors so much, I may have requested these again. I did have these tests done about 2 maybe three years ago when I changed surgeries - All that was highlighed was my TSH, Iron and Vitamin B12 was above range but told that was ok, Vitamin D had been rectified 5 years ago, so was helpful then

  • You have to request a print-out of your last blood tests. I think you know not to take levo before it? Never believe "normal" it's meaningless to us if we feel pain/ill.

    Get a print-out with the ranges - normal or not- and post on a new question for responses.

    You should not feel unwell if you are on optimum medication, unfortunately the doctors appear unaware of this phenomenon.

  • Hello Shaws, I will go and see the GP and ask for tests.

    Your so right, I can't think of the last time I was listened to/examined, I just get sent for a blood test, surely they could tell more just by looking at me, it's so frustrating.

  • Just for information.

    hormonerestoration.com/Thyr...

  • This is excellent Shaws, thank you very much

  • Call me cynical but I'm beginning to think they neglect to test T3 in case they have to treat it because they can see T4 just isn't working, T3 is too expensive (?) and NDT is an out and out no, no! So they don't test it and then they say 'I've done all I can'.

    Kitten, have they checked out all the other suspects Vit D, B12, ferritin and folate? If not then that is something they can do. Like shaws says, yu want a full thyroid profile with everything done. If they haven't checked all that then they clearly haven't done everything.

    You could always try telling them if they test every single thing to do with your thyroid you will feel they really have given you a fair chance and done everything possible and you will accept what they have to say - you don't have to mean it.

  • Thank you fruitandnutcase, I think I am done with docs and endos now, If only they could feel how I feel now, this stress is no good for me. I can not think of a time in all the 34 years I have been on this planet that they have ever helped me at all, so they are not going to start now.

    After her saying about me never getting better has caused tremedous stress and has put me back further and now part of me believes her. So I don't want to see any of them again, they are a disgrace.

    Best wishes

  • Fruitandnutcase you are not cynical, just stating how things are. My local Endo thinks that having TPO antibodies is an irrelevance and therefore does not need treating! Calling it Hashi's is also a no no as again that means giving it a name and means treating it! The same endo also firmly believes that the TSH test is extremely accurate and there is no need for T4 and T3 tests! Thanks to this I read a lot, noted what others on here have done and went gluten and lactofree and reduced the antibodies . I also paid fro private blood tests to check vitamin and mineral levels and bought the supplements and the result is I feel better, not 100% but better. I cannot believe how NHS thinks it is OK to keep people feeling ill but pump them fuull of pain killers or anti depressants.

    Kitten I do hope that you make some progress. As always you have been given some very good advice on this forum. good luck

  • What can you say about someone like that. What a dinosaur! Not only is he not making hist attempts better he is possibly damaging some of them. How can anyone consider antibodies irrelevant? It's dreadful people feel they have to get their own blod tests done and treat themselves. I just don't understand the NHS theory of keeping thyroid patients I'll because they only want to treat with T4. Just can't understand it - surely those naysayer endos must really know what they are saying / doing is wrong - even if they won't admit it to their patients.

  • I wonder how much money is to be made with so many of us being on t4

  • I would say loads for the drug companies, when I was on the tablet form of T4, I also had to have Iron Tablets, Vitamin D, 6 laxative sachets a day and of course Beta blockers - so in my opinion they are laughing all the way to the bank. In the long run f they actually tried to help us get better, it would cost a lot less in the long run

  • I have been coming of many of my drugs since last Autumn. No longer take Beta blockers, amitriptyline. Now very slowly reducing raniitdine, now half the dose. Feel impatient to leave this off but know it has to be a slow process. My doctor knows what I am doing and is supporting on this, so I am very lucky . I am not out of the woods yet. I have been on the above meds for many years and from what I have read it takes a time for the body to adjust. However I can say I feel better in myself. Hoping for warm sunny weather to see more improvement.

  • That's great to hear, well done

    I hope your improvement continues : >

  • I think you are right fruitandnutcase, I think the cost of T3 comes into things. My G.P. told me it was expensive and said he is not even allowed to test folk for T3 unless their TSH and T4 are out of range. I am lucky in that he went along with my request for an antibodies test and when that came back positive, he had no hesitation in starting me on Levo and I do think I'm feeling a little better in some ways already.

    Kitten-whiskers, I do feel for you. Don't give up. I think you HAVE to research and be assertive and just keep pushing for what you want with doctors.

    Over the years, I have repeatedly had to use pester power to get tests done etc but I understand when you feel like rubbish, fighting is the last thing you feel like doing.

    I hope you get some help soon.

    Sending you all the positive vibes I can muster.

  • You're right chocoholic, it is very hard to put up a fight when you're feeling really bad and totally disillusioned. x

  • Thank you Chocoholic17, much appreciated. Really don't want to face doctors/ endo's anymore, they have done nothing to help and just end up causing so much stress and anger.

    I hope your pester power helps you and you feel better soon # : >

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