So, so hurt

It's 3.15am and I still can't sleep. Why?

Because like most of you on this site I have been so belittled and rejected, 43 years of it. This last 18 months especially, I have battled so hard and I am not going to apologise for being ill. It is only in the last few months that someone actually said I was ill. I spent my whole life in misery because of labels put on me and when I eventually found out about the thyroid and all the problems it causes I flipped out big time. My anger now is of the last 18 months when doctors knew what the problem was and the pshycological difficulties it causes they still belittled me, lied to me and bascially closed the doors on me. When I developed double vision that is when I was refered to endo and before my backside met with the chair she said there was nothing wrong with my thyroid I was an anxious depressive. I went to PALS and complained but of course, I imagined it, and she (endo) said she would never say such a thing to a patient. The eye hospital told me I was lying about my eye symptoms and insisted my affected eye was my best eye. A second opinion at another hospital disputed this and the rest.

So my problem is now I am finding it hard to move on, I don't trust any doctors and am sad and angry as there is no justice, I can't prove anything.

Please don't go to appointments on your own take someone as a witness.

I am on T3 only and TT, I get regular blood tests but gauge for myself by how I feel and at last I am begining to feel whole, though I had forgotten how that feels. Don't give up. Keep fighting and you will get there, I never thought I would and I have forgotten how many time I fell and picked myself up again, just to prove the b*****s wrong probably. It has been so good to find this site recently. I just want to fight for you all, I think it has made me feel stronger and I would love to write a book but it would be too daming to print.

Be strong, no one knows you better than you, remind them you are a unique human being not a text book, you are you and what is right for you is not what is right for everyone. It is time these doctors thought out of the box

Hope I haven't bored you all, I live alone and needed a bit of a rant.

33 Replies

  • ....sorry to read of your difficulties - but hey it's good to have a rant - and this is a good place to do it ! Maybe it would help us to help you if you were able to let us know your recent blood test results with ranges....maybe something needs tweaking somewhere. Good that you are able to guage things for yourself.

    Good that you are responding well to the T3. How about having your B12 VidD Folates Iron and Ferritin tested.....this makes a huge difference to how you feel when all these are at the TOP of the ranges. Also improves absorption at a cellular level.

    Please don't be angry. You have a diagnosis and now it's time to take one day at a time and enjoy. I wasn't diagnosed until I was 59 and should I allow myself to reflect on all the wrong decisions made by doctors I too could become angry. I often joke that had I been born in the States I could have sued for millions, retired at 40 and had a life of luxury !! :-) Would I have been any happier ? - probably not. Having to fight through life makes you appreciate so many little things on a daily basis.....Am now 67 and am healthier and stronger than in my earlier years.

    Have learnt lots of things from this forum about fine-tuning the process and supporting your health. It is important to take control of your life and health and then you can pat yourself on the back when things improve. Also you may be able to help others in the future and that IS a good feeling.

    Your post was NOT boring.....go with your intuition and save your energies for all the positive things....

  • Hi you certainly sound posative which is great, I am trying to sort my levels out too can you tell me where you got your test done, did you pay to have them done?


  • I retired to Crete in 2004 and had my tests done here in 2005. Went to the private GP in the village with an irregular heart-beat. She asked if I had ever been tested for thyroid and I thought not. TSH FT4 FT3 Anti-TPO Anti-M and Anti-Tg were tested and I was sent for a scan the same day at one of many Diagnostic Clinics in Chania. Came away with the scans and full report in my hand - 8 euro ! Now more expensive. Blood tests back in 2 days and again all the results were given to me. Scan revealed nodes which I have checked from time to time and blood test revealed that everything was in range ?? - but had very high anti-bodies.

    Not surprising as I had ileo-caecal TB in my 20's and Crohns too - both requiring lots of surgery over the years. Managed to hold down a demanding job with a home and family but I now realise I was completely mad to do so. I really pushed myself to keep going. Hence I ignored the thyroid symptoms as they were all muddled up with long-term illness.

    Started on T4 - then a combo last year and now just T3. Have followed lots of advice on this forum re vitamins which have improved my well-being. I'm loving the relaxed lifestyle here, the warmth and being able to be outside so much....and as you can no doubt detect - I am very impressed with the medics too !!

    Please do ask me any questions if you think I may be able to help. Thank you for your response.....


  • Hi Marz

    thank you for reply, so glad you are feeling well these days.


  • .....sorry about the double posting - site playing up - or is it me ? x

    [Admin deleted duplicate post and can confirm site playing up]

  • Marz the site was playing up last night, lots of duplicate postings :(

    Joprince, you post was not boring at all, its great that you are now starting to come out the other side and are feeling a bit better now. As you say no one understands your body like you do, I really hope you get back to feeling healthy really soon. T3 for some (including my husband) is a real miracle drug x

  • Sorry to hear of all your suffering, I have also been on that bank wagon for 18 years and I feel I am making a little progress now. Hoping to get T3 on Thursday. Had full thyroids done and all the rest B12, Ferrotin, Iron etc Wish me luck. You can see an earlier blog I put on here about it all. Wishing you all success, and yes learn learn learn, I am and like you say no one knows your body and its emotions, and physical pains like yourself, listen to it..... It will not do you wrong...x

  • Sorry spelling mistake meant to say Band Wagon.

  • Glad that you are now on the right path but what an awful journey you have had, I feel for you I really do.

    Yes we put our health in the hands of these people but, most of us, have to fight tooth and nail to get want we want and deserve. Its a shame that throughout your long journey you didn't come across one doctor who was willing to believe and help you but, unfortunately, this is an all to familiar story on here.

    We all learn in the end that unless we are keeping our own records (blood tests, scan results) and checking what, when or even if the medics are doing there jobs properly then we don't seem to get very far and I have stressed more than once on here how important it is to do this.

    Hope your journey will now be a smooth and stress free one in the future.

    Moggie x

  • Thanks for your replies they are encouraging.

  • Hi joprince. It was so sad to read your story. I have been through a similar experience and can relate to everything you've said. I've largely gone my own way, I'm not offering myself up for blood tests and I'm experimenting with medication. I'm convinced it's the only way to improve.

    Regarding your double vision, I am having terrible problems with that. A few weeks ago it was just about 24/7. I have T3 on order, has your vision improved?

    Hugs. XX

  • No my vision has been the same for 15 months now but at least no worse. Waiting for another appointment to find out if will operate to bring eye back in line.

  • My heart goes out to you. You have been so brave over the years. It is a disgrace how the medical profession have treated you. Wonderful to hear you are winning through. This whole thyroid scandal will come to light in the end and God Bless Thyroid UK for all it does for thyroid patients

  • Your message was not at all boring and it's good to share feelings on here with like minded sufferers. Sending warm and gentle hugs for you today. xx

  • I Agree 100%

    “I don't trust any doctors. I can't prove anything. Please don't go to appointments on your own take someone as a witness. Get regular blood tests but gauge for myself by how I feel and at last I am beginning to feel whole, though I had forgotten how that feels. I would love to write a book but it would be too daming to print. Be strong, no one knows you better than you, remind them you are a unique human being not a text book, you are you and what is right for you is not what is right for everyone. It is time these doctors thought out of the box”

    I wish I had not been so trusting when I was swapped from Liothyronine to Thyroxin &

    explained my Thyroxin Side Effects to the Endo Specialist. I would love to of been able to prove the verbal attack I received from him. His medical negligence & incompetence has ruined my life. I will never be well again or regain any quality in my life.

    Someone told me to continue to go alone to all my health appointments related to the long term side effects of what that poison Thyroxin did to me but take in a Hidden Spy Camera! If you have your appointments videoed you could prove you are telling the truth.

    Recently I’ve found that if the Specialist Doctor does not believe that “5% of people cannot convert T4 (Thyroxin) to T3 (Liothyronine)”. I name my nice Endo Consultant who is regarded at the top one at the central London Hospital I am now under & say I believe every word he says & I thought it was common knowledge. It’s unbelievable how they react when they realize they are contradicting someone who is so knowledgeable & well respected in Endocrine Medicine.

  • I know you can't name any docs on this site but I'd like to find a knowledgeable Consultant Endo to be referred to. I'm fed up with trial and error with GP's and have never seen an Endo. How do I find out about your knowledgeable one?

  • When I went alone to what my GP had told me was a 'CFS Clinic' and it turned out to be a psychiatric assessment, (he agreed to refer me to the private endo of my choice only if I agreed to go to the non existent CFS Clinic), I took a small voice recorder with me and plonked it on the desk in full view. They are very good and don't cost much.

    Three of them, one of me - seemed like a fair thing to do, in fact tough luck if they didn't like it. So on the surface they were very polite and there was a lot of 'if you don't mind' and 'if that's all right with you' sprinkled into the conversation.

    However, the report they submitted to my GP was still a work of mostly fiction, putting words into my mouth which I had never said, as they always do, and writing in such a way that it was plain that they didn't believe much of what I said. They repeatedly wrote 'She denies....whatever', which was not true, I didn't DENY anything; if I said something didn't happen, it was because it didn't happen.

    I wrote to my GP refuting much of what they said, and if necessary I could have proved it.

    Anyway, I just thought that a voice recorder - and not bothering to hide it - might be an easier option than a secret video camera. If you are allowed to have somebody with you but chose to go alone, they can hardly complain if you record what is said.

    Just a thought.

    Kanga x

  • as if the illness isn't enough battle and agony why o why do we have go through this sort of crap ?What type of 'Pogrom' is this ?All out of order,do have the same experiences with PALS ,etc.have been ill too many years always the same ''protocoll'' which is WRONG !Thet are having a LAUGH on our account ,yeah laughing all the way to the bank,while we are dying,slowly and painfully,OF COURSE I DO NOT TRUST THEM !Dr.s busy abusing us and their position !

  • So sorry that you have had to listen to people accusing you of lying. To me there is nothing worse. We are brought up to tell the truth and seek help only when really necessary. In any event who would want to lie about thyroid problems. I think I could invent more exotic diseases if I wanted to somatise (transfer psychological problems in to physical ones).

    To my mind trainee doctors should undergo psychological testing to check their levels of humanity, understanding of people and whether they are delusional thinkers. Tests should be repeated every year. They should also be trained to query their own understanding of medical matters and to challenge their teaching in light of new information. I guess this is supposed to happen. Yet these people work in an extremely pressurised environment that increases stress levels which in turn can cause tunnel vision, the development of bullying behaviour and lack of attention, concentration and finally loss of competence. Unfortunately, because treatment of hypothyroidism seems to clear cut to them we become front line victims.

    Glad to see that you are fighting back. Remember we are all here to back you up.


    Lin X

  • Hi joprince - it made me so sad to read your story and you have been incredibly brave sharing it - I have trust issues with doctors as well and when I used to give opinions I was mocked and felt so belittled. As you say it is good to take someone with you to appointments so at least they can verify what has been said. I always feel that doctors and consultants would need training in how to deal with people in a sensitive and respectful manner - they may have the intelligence to qualify as gps but there is a lot more to it than that. Hopefully you are on the road to recovery now. xx

  • I agree too, doctors lie to you, they withhold information and generally try to cover themselves so they don't get involved!! I wouldn't trust one as far as I could throw one!! My current endo prescribes NDT for me but is a slave to blood tests, even though I sent him a 7 page document about the reliance on TSH tests and the fact that ALL thyroxine is SUPPOSED to suppress TSH!! No, he says, you will get heart problems and osteoporosis, I asked him to send me for an osteoporosis test, he refused and said I should ask my GP, I did and surprise, surprise, I am not in an 'at risk' group!! Nowadays if he says anything I just tell him that we don't agree on the subject so lets not argue!!

  • I think be careful that the person you take as support does not belong to the same practice and has lies put on their medical records whilst they are supporting you.

    I also think when your friend turns up with their notebook the specialist behaves themselves more. Specialist services are offered and acted upon on the spot as well. Tell your friend to wear something you might wear to the office...

    Always obtain copies of all reports and tests.

    Always sit facing the computer screen to check each screen whilst you are there at each appointment.

  • You need to see Dr Barry Peatfield. Find a clinic near your home and see him. I guarantee this time next year you'll have a different view on life. Eve

  • joprince, I think you've done a service to the readers here. I've urged people to find ways to treat their illness with or without these negligent GP's within the NHS. Why let your health go down the drain when the treatment is relatively inexpensive. If the patients can get over the fact that they should be getting help from the NHS, it's better to take the responsibility of helping yourself as unjust as it sounds.

  • Thank you for ranting and your story has inspired me. I too am not having a good time at the moment and feel like giving up but your story has made me think differently now.

  • I am so glad, I am on a low today and full of aches and pains but it will pass. An early night I think. Tomorrow is another day and another step forward.

  • Thanks for being positive, it really helps.

  • Has anyone tried EFT (emotional freedom technique). I was introduced to it about a year ago and thought 'what a load of crap' at first but in private and quiet time I tried it and now use it a lot. I find it does help a lot especially in getting my mind and body working together. There a several sites on this but I use

  • About trusting doctors;i have always found it v 'weird' and fustrating how my nhs doctor is so 'defensive' (and narrow-minded)about thyroid problems;just doesnt want to acknowledge anything outside that v narrow 'perception'/treatment of hypothyroid that they have been trained to do.(like he basically cant be a***d to learn any new info about it because it is so complex;is only reason i can see..)It does beggar belief that they let people suffer like this knowing that there is more to it than bloodtests.When i went to ano gp in same surgery,again,he was v unsympathetic and just weirdly if they know they r doing wrong.But i guess thats what they r taught in medical college;to lie and use authority as a cover for incompetence.But the whole system is corrupt really anyway;because of the way that greedy pharmaceutical companies have the control..Thats my rant of the month.thanks;hadnt had one in long time ..(lol).have to laugh or be crying..but we can at least support each other and share info to empower time for us to stand up against this ignorance...Things have got to improve;its completely unacceptable.

  • I agree, I let them think they are in charge, I listen to the GP's then make my own mind up. Last week I was told to reduce my T3 as test show slightly over range but I felt ok so have not changed. If I feel well and vitals are ok I stick with that. After all they don't know how we feel. I also thick they have to stay within the NHS guide lines.

    In some ways I feel lucky as my doc's did prescribe T3 when I was so il on T4 and begged desperately fto try T3 and when they saw the difference it made to me they could noe really back down, even sourced some due to shortage. The endo's wont prescribe because of NHS policy.

  • Hi! joprince

    I have recently found this sight and NO I am not going round the twist, I have found that my health is down to my hypo and not my age (62), I don't think I have the fight in me, although I am angry that I have suffered, felt guilty for not being able to pull my weight in the home and was not given the information that I needed and also fobbed off with your blood tests are within the normal range. Years ago when It was found that I was hypo and was put on Thyroxin once the dose was right I felt I had got my life back, but now I feel ill and all I get at the gp;s is bloods within the normal range,

    I have had an increase in thyroxin of 25mcg every other day and began to feel a little better for approx. 2 to 3 week but have now gone back down and feel lifeless again, don't want to bore you anymore but knowing there are other people out there that understand is comforting.

  • You may have a RT3 problem but this is differcult to prove as NHS stopped the blood test for this about 9 years ago. You could get it done privatley. Where we can't prove they can't disprove it. I read somewhere that when we take T4 it is like a pendulam and it swings up andd down then settles so perhaps you need an increase again. As for bloods what is right level for one may not be for another. I believe the time of year can make a difference too.

    Are your other bloods ok such as B12, ferritn, calcium , vitD ect?

  • Thank you for replying, I have not requested my results and I don't think I have been tested for B12,ferritin, calcium or vitD, I just accepted that I was on thyroxin and when I when I started feeling the symptoms again after years of feeling ok I was fobbed off with the bloods are within the normal range, until I joined this support group I had no idea that there were others like me, I was thinking it was an age thing and I had to live with it.

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