Thank you and ending the battle

I would like to thank you everyone who supported me with good words and advice on this forum. I wish you all the best and full recovery.

I myself realised that I won't get enywhere by asking questions and experimenting with my own body. I don't trust any of doctors whom I came across. I paid, I got erfa prescription and was told just to get on with it.

I have expierienced many complications and I am very unwell. I don't see any difference after taking NDT . It's been only 3 weeks on erfa, currently on 1 grain but despite this being a short time and dose being very low I would certainly show some even little improvement but I didn't and I continue to get worse. I am spending my days in bed. Tired of symptoms and fed up with all medical world. I decided to quit fighting because I am getting nowhere anyway.

I am perhaps not lucky enough.

Anyway warm wishes to everyone

E xx

54 Replies

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  • Edysia, it is painful to read that you feel this way. As long as you communicate there will be hope and improvement.

    Please hang on in there. Speak again tomorrow. Sometimes it is not a fight but a plod. It can take a while for a miracle.

    wyn

  • Hi Edysia,

    I am sending you a P.M. Jane x

  • Please do not give up Edysia...xx

  • Edysia, please keep talking,it helps, come on girl we are all suppotive of you, you have made some positive steps hunny. xxxxx hope you speak tomorrow.

  • So you just going to give up and let all those doctors think they are right ?

    Oh.

    Getting yourself better would have far more impact. The doctors would doubt their treatment methods and might even change them eventually.

  • Please don't give up. The answer is out there somewhere.

    It can take months before all of those cells wake up and start to work again.

    Please hang on in there, we are all here for you xx

  • Thank you Suze. I am out of energy, I can't look for answers. My GPs are so uncooperative, put it in a gentle way so I can't even get my tests done recently. I feel sick on Erfa at the moment and I don't know what are my levels like.

    E xx

  • Hi Edysia,

    Was just checking to see how you were doing PLEASE PLEASE DONT GIVE UP

    There are many of us that hit rock bottom.

    Please dont give in we all need to stick together fighting this together and helping each other.

    Please please have a look on that facebook page I told you about there was a guy on there a little while ago who hit a very bad low and he got through it There is a light at the end of the tunnel

    You have so many people on here that are rooting for you to dont let the incompetence of the medical profession win fight this please

    sending you much love and a hug xxxxxxxxxxx

  • Please let us know where you are even if you message a volunteer there is someone near you who Im sure will get in contact with you and help you fight

  • Edysia - it's very early days and as you've been ill for some time your body has a lot of work to do. Three weeks on new medication is not very long but you must hang in there.

    I thought I was never going to get better (only hypo) and T3 wasn't working as quickly as I thought it might. But I've hung in there for quite some time and it's getting better.

    You can get through this and it may possibly help by taking adrenal supplements, as per your other post. That can be the key for some people, sorting adrenals before anything else.

    We're all here for you.

    Take care.

  • Excellent advice. Please do give your body time to adjust. It is understandable that you are feeling very low but know that you're not alone with this. We all care and are willing you not to give up. X

  • Edysia, please don't give up, I know you are exhausted, drained, but you can get well, you can.

    Edysia, please consider talking to Janie Bowthorpe, author of Stop The Thyroid Madness, and who started the famous website. She dragged herself back to health from utter rock-bottom, right where you are, and now helps others back up to health.

    The link telling you how to talk to her is:

    stopthethyroidmadness.com/t...

    I am willing you over the ether, wherever you are, to get the strength to fight for your right to be healthy.

  • I have read your messages with saddness, I have had this horrible condition for 20 years. I am fortunate changed too armour and it has changed my life, started in january and I can honestly say had the best 2 weeks of my life. Just working my way through too the correct dose I feel confident that this will save me, and I hope really hope that you have the luck that I have had , keep going, there is something out there that will help and I hope your journey too find it is short, best wishes karen

  • Everybody here understands and cares, we know that whatever your circumstances this condition isolates you and can make it too difficult to go on with our personal battles. We all want you to go on and to one day hear you are feeling better.

    If we could all be there with hugs, cups of tea, some spring flowers and of course some cake, we would be.

    One day at a time and keep telling us on here how you are doing.

    Xx

  • Lots of hugs, still think you should go on fb,. Xxx

  • Sending you (((((((((((((((((((BIG HUGS)))))))))))))) hang on in there we are are praying you will turn the corner with an improvement today that we all know will come soon. :-) xx

  • I know that the struggle can seem to be endless, we all would wish we can give you the magic formula to help you, I also wish that we could walk by your side each step you have to take, it is not good to be so alone.

    Please remember that life is still precious, there are those who care, and although it is all such hard work, we also appreciate that you keep telling us how you feel. Some of us have been where you are and although everyone is different I am sure there is an answer out there for you.

    Lots of hugs and thoughts and prayers for you

    Marie XXXXXXXX

  • Sending you love and hugs. X

  • Thank you

  • I do not know your history and maybe you have tried all other options and they haven't worked. If so tell me to go away! But I have been through 7 years of hell following thyroidectomy for Graves and I have tried T 4 for six years, verdict useless, followed by T3/T4 combination, verdict not working, followed by Armour for six weeks, followed by T4 again, followed by Armour again and now hallelujah! I think I am actually getting somewhere on T3 only. Dr. S has prescribed it but I am also avidly reading Paul Robinson's book, "Recovering with T3". I think it s a T4 problem for me. I just cannot tolerate it and maybe you are the same. I can actually feel each dose of T3 making me feel better. Long way to go yet as on low dose to be increased but I am so hopeful. Please do not give up. We all know what you are going through but you can beat the devil thyroid. And the sun is shining today, telling you to struggle up and find a doc who will listen. Dr. S is such a kind man. Can you get to see him? Lots of luck xx

  • Sending you lots of love. Please try and be patient a bit longer as you have been ill for a long time and your body will not recover immediately. I was sub-clinical for only a few weeks and it took me a full year before I felt better. Please hang-on in there for a bit longer and give your poor battered body a chance to recover. xxx

  • Hi Edysia. Did you go back to Dr S and let him

    know how you feel? When we last spoke you were

    going to talk to him again. What advice did he give you?

  • I wrote very lengthy emails ( 2 weeks ago and second email a week ago) describing my symptoms, feelings, complications concerns, including questions addressing influence of oestrogen dominance on thyroid treatment which is one of my problems. I don't write much here, but I do have medical knowledge and it really hurts me when doctors make mistake or do not know basics such as sex hormones - thyroid hormones connection. It leaves me hopeless. I stopped pointing these mistakes because i am just so fed up. I am very depressed... I am losing the most important exam of my life now, because I can't prepare myself for it. Losing this exam means losing chance of completing my degree. I am really unwell because of this. I postponed this exam so many times and I can't postpone it any longer. It's all because I couldn't find anybody who would listen and understand the intricacies of human endocrine system. I fought for basic tests, I fought for partnership in medical treatment... It's just too much to explain, I truly gave up

  • I've been ill and undiagnosed for 20 years now. I felt like I was going mad with the endless hospital appointments, and not one doctor treating me as a whole person in order to help. I've seen myself gain 5 stones in weight, the ten years younger that everybody thought I was, has long since gone. I've felt very old and withered. I got diagnosed nearly 2 years ago and nothing has seemed to help. I have been very low and tearful. I sent you a very long letter when you first came on to the forum. It's so easy to feel as you do, I think we have all been there. But you know what Edysia today I have a glimmer of hope. I have woken up this morning and my dry snake like skin has softened a little. Something must be working!

    It takes months if not years to recover from this. I will be so happy to see my GP when I start to look better and say "you got it wrong". It's not just for my own self esteem, it's for all thyroid patients. WE can all make a difference by speaking up and educating our doctors. I do truly want to believe the tide may be turning. Those incredible, brave Scottish women addressing the Scottish Assembly made me weep. I watched that video it was so emotional, but also very empowering. Those women like a lot of us have been to hell and back. They've fought the system and now they are well. NO doctor is going to wave a magic wand, I've learnt that the hard way. You are intelligent, articulate and you have a very good friend by your side. You can definitely beat this, but it requires a LOT of patience. Massive hugs. xxx

  • It's so sad that you feel like this Edysia, blooming doctors should have a kick to do something for you. This site is a lifeline, for me, you, everyone cares, and understands, we may not be there in person with you but we,re supporting and virtually holding your had all the way chic. PLEASE don't give up...hugs..

  • Edysia

    I have an underactive thyroid and also another auto immune disease called Primary Biliary Cirrhosis. My GPs to put in one word CRAP!!!!! So I spent nearly a year in bed and then had enough and looked at a thyroid forum for help and thankfully it did but I really struggled with T4 meds. I am currently on mix of Westhroid and T4.

    So fast forward to end of 2011 and my skin started to itch and burn........ it was and is horrible...... I have struggled on with working, caring for dad and spend a Friday looking after my gorgeous granddaughter. Last week I was about to give up and had to take time off work. I also noticed when I ate some things that I had abdominal pain and had to be near loo. I researched food allergy and came across high histamine levels. I thought I had a healthy diet with spinach smoothies but realised that some healthy food are high in histamine and cause the itching burning skin. I have started to detox body and went to dietician with my theory and we put together a diet which I started yesterday. I am chuffed to say that even though I knew it would take time........ I had a FANTASTIC day yesterday with hardly any itch. I am off ALL meds apart from mix of Westhroid and T4 and reduced my sleeping med and had the best nights sleep in a long time. I have a long way to go but I realised that only ONE person is going to make me better and that is me!!!!!!!

    I was supposed to have a liver biopsy in January and speak with Edinburgh Transplant Team in Feb but I had to cancel appointment as I was ill. Also I didn't think it was my liver that was causing the itching / burning and I wrote to a Professor and he totally agreed with me.

    I think everyone with chronic ill heath really needs to detox their body with support from someone. Also people with auto immune issues can have a lot of things that go out of sync and to be honest I would say that the medical profession no very little about the endocrine system. Just my opinion.

    Last week I was totally at the end of my tether as the itching / burning was taking over my life and I could barely function. I hope my story gives you or someone hope for the future.

    Hugs

    Sx

  • Edysia, what are your antibody levels like? For the first time I have come across the theory (I don't know if it is true or not) that if your antibodies are high, ndt won't work for you because it is destroyed just as the hormone your thyroid makes is destroyed. So if this is the case, you might find when your antibodies are lower, it may work for you.

    A lot of people who have recovered and feel great have already spent a lot of time where you are. You could be one of those people soon. I hope you are. x

  • My TPO antibodies are < 20. Negative. Labs won't repeat tests as they are convinced that once you are low on antibodies then you can't go up- money saving NHS twisted politics.

  • Dear Edysia, I have just phoned Dr P's office and there are apparently appointments available next week. I hope you don't mind but I mentioned your plight and gave them your blog name. Please please phone to make an appointment.

  • I don't have money to see him. It's far and I can barely move.

  • ...try to just ring the office - there is one lovely lady there who knows oh so much and I am sure as she knows of your plight will do her best to help. I have found her so kind and helpful at difficult times. The phone line is so very busy but do keep trying...please.....x

  • Edysia, No one blames the way you are feeling and I am glad you are putting it into words. The utter frustration and realization that ill people seem to have no impact in this world that revolves around fear and greed is agregious. Sometimes I even wonder if life in this world is worth living and I am not so bad off as you are. Not that I give you permission to give up. I just wish you would try T3 only, if you haven't already. Could you send a printout of this thread to Dr. Skinner? I guess he is overwhelmed himself and probably has all very desperate patients but we don't want you to be the sacrificial lamb that proves how disgusting the system can be. And it actually supports his efforts to show how many are put off by the NHS and are forced to find help elsewhere.

    I do agree you should probably see a little improvement soon and hope to God you do.

    Please write tomorrow and give a review of your feelings, sometimes one day can make a difference.

  • Thank you. I can't write much. I can't talk to dr S, his phone is always busy , besides I am too anxious , to upset to talk. I have sent one email to dr s 2 weeks ago, I sent another one 1 week ago.

    He doesn't do emails. I can't communicate in any other way.

  • I wrote very lengthy email, describing my symptoms, feelings, complications concerns, including questions addressing influence of oestrogen dominance on thyroid treatment which is one of my problems. I don't write much here, but I do have medical knowledge and it really hurts me when doctors make mistake or do not know basics such as sex hormones - thyroid hormones connection. It leaves me hopeless. I stopped pointing these mistakes because i am just so fed up. I am very depressed... I am losing the most important exam of my life now, because I can't prepare myself for it. Losing this exam means losing chance of completing my degree. I am really unwell because of this. I postponed this exam so many times and I can't postpone it any longer. It's all because I couldn't find anybody who would listen and understand the intricacies of human endocrine system. I fought for basic tests, I fought for partnership in medical treatment... It's just too much to explain, I truly gave up

  • Hi Edysia

    Dr S is always busy, but he will phone you and talk things through if you contact them as I suggested and ask for him to do this. A time can be agreed for him to ring or for you to ring him. If is difficult with so many people needing his help, but Dr S and the people working for him do try very hard to make sure that they respond to patients. I too have waited and have sent and resent emails from time to time, but have always received a response. Dr S even arranged to call and talk to my husband because I couldn't talk to anyone on the phone due to high anxiety. Thankfully that has now gone away as I steadily improve. Even Dr S will tell you as he told me that it can take a long time for medication to work properly. He told me to be very patient because it would take at least 18mths if not more. I have been ill for 25yrs so 18mths didn't seem unreasonable. I'm 14mths along with treatment and although it has been very, very hard getting medication right and believe me I have shed a lot of tears, I am now really getting there. I plan to write to every GP and consultant I have seen and proudly say 'I told you so', and I will take pleasure in doing this. It is that thought that has made me determined to keep going.

    Try not to give up.

    :)

  • It's heartbreaking to read this thread, where so many of you have been and are suffering so much. Edysia, I can only send you moral support and "pray" that there's a ray of hope very soon :-*

  • Edysia, there is wisdom in resting, conserving your energy to regroup your forces and choose to change strategy. I have read earlier posts and am new to this site and newly diagnosed after six months of confusion, anger and fear - that I was losing my intelligence, my concentration, that as an avid reader, I could no longer retain information, even as basic as a plot. I started an OU course in Psychology and my grades dropped because study skills and mental sluggishness were draining both impetus and focus. I eventually began to cut out non-essential activities - volunteering work with a charity, socialising, part-time temporary work... It felt like giving in. I found a more informed and listening GP in the practice who prescribed -against the previous doc's protocol- antibody tests(as opposed to a diet and anti-depressants amongst other things). Positive result. Started taking levothyroxine seven weeks ago-ish, continued to do only one significant 'task' per day and am gradually finding that the levo, though inadequate, combined with more rest, is yielding dividends. I still croak, I'm still tired, my concentration has improved and the renewed focus helps me to continue to arm myself with info.;improves my self-esteem because I finish the tasks - second essay completed and in the same grade band though lower raw score. My point is - it wasn't the meds alone that were helping, it was the rest and the targets set, the de-cluttering to save energy and resources. Conserve energy - it's an energy-stealing disorder - then refocus. I felt despair that I wasn't a person any more, I was just a collection of malfunctioning chemicals and the things that made me - personality, memory, even language - were being eroded away. Rest up, increase energy resources then go back to the fray. Thinking of you - resting but planning.

  • We are studying the same thing at the same university. I am doing OU Conversion Diploma for postgraduates, however I expierienced so many setbacks due to my illness that I can't take my DD307 exam inApril which is my final date ( due to rigid rules of OU, I have appealed many times, fought so hard not to discriminate me against my illness , I won the appeals but this April is final and I really can't study, I am crying, screaming every day. I am pushing but I can't go thrugh the page of my book. I have always studied and my brain was all I had. I feel that I can't live any longer. I can't find myself. It's like I am gone and my life is totally distroyed. I am trying to conceive energy, but there is always something some new symptomps that hits me ... And this constant pain of my lower abdomen( waiting for MRI scan). I will miss this April date, and that's the last thing I need... I can't cope with all this I really can't .. ...even today when I went to surgery to check if I can see my GP( the only one there that refer me for tests from time to time) I found that she is off sick. That just made me so upset because I know that I need to check my hormones levels but I can't do it until she comes back... I need tests urgently.

    Love

    E xx

  • Can you defer the exam to next year? Do you need a doctor's note? You are not in a good place either physically or consequently, mentally. I am trying to decide whether to go for the April exam or to ask to defer it. I am wayyyyy behind on the reading by about 6 weeks and will have to re-read and remake notes because my memory is so reduced, likewise my concentration span. My course is DSE141.I have an online tutorial on Saturday.Will ask about deferring and get back to you.But, E, you will find yourself again - you sound passionate and vibrant, despite your ill-health and frustrations. That core is not lost - recoup by rest and get a friend or ally to do a bit of fighting for you - with the OU, with your GP practice. Keep in touch.

  • I hope you feel some improvement soon. Please don't give into this awful condition, though I know how hard it is to fight it, you can't let it win. We are all here for you, please take care of yourself and just take one day at a time and eventually there will be some improvement. x

  • Thank you so much everyone for your encouraging words. I am thankful for your support. I just can't find enough hope and energy to fight.

    Sending love and best wishes to all

    E xxx

  • Edysia

    The problem here is many. The main problem is you've had this a long time but also there are many issues that are getting in the way.

    Here lies the problem. The longer something is left untreated/mistreated the longer it can take to feel well. I should know this as its happening to me. I fight, not for myself but to stop somebody else being missed.Soembody like you that I can see with the right treatment can have a comfortable life and not be in permanent suffering.

    Now you mention oestrogen. i did ask you questions about it, forgive me if you have answered I have not looked back at it yet.

    What might serve you best is to write every sympton down, right your menstral cycle down to, if applicable. I am assuming you are intact and not gone through the menopause yet. When the list is complete, note any symptons that appear in the menstral cycle, or any that get worse. These are the keys to unlocking a more managable you.

    Also alist of what you can do, did do and the effects these symptons have on you doing so. Such as , love reading but cant sit still or concentrate due to pain overload. Love gardening but cant d more than 10 minutes as fatigued. Be honest be truthful show how and what you can /cant do. There is no shame. There is help, even if it takes a good deal of door kicking in to get.

    Ive kicked many doors as I have had slammed shut in my face by so called Professional Drs.

    I would suggest you make an appointment with a Gynacologist and pain management. The onus is to get an ultrasound done, to check the ovaries, any cysts, fibroids etc. That is a must. Your own GP can arrange this. Be firm on requesting. Same as you have the right to see another GP for a second opinion.

    What I suspect, I may be wrong. is you have on one hand the thyroid issues, on the other side the menstral issues. Seperating the 2 is not an easy task., but its worth doing and getting investigated.

    You can have your ovaries shut down, there are contraceeptive pills that do this, or specific injections that would either force you into a menopause if applicable for your age.

    I Know the horror of overactive oestrogen. I know the horror of extensive adhesions and fibroids or mishapen organs due to the fibroidal bulk.. I know the horror of being missed in the system and the damage done. The damage done via bodged operation done by surgeons who should know better and should have done their job properly. People like me dont have a personal happy ever after, We have a happy ever after moment helping people like you get the treatment you deserve.

    I am telling you there is help out there, yes its not always easy but you have the right to demand it, and you have seen there are many of us who are willing to help you through this . Equallyhelp you fight the system to get the right treatment. Half the battle of being ill is getting somebody to listen to you.

    I have 4 sugesstion for you I would love you to take up.

    1 - Write a complete list of symptons, and menstral cycle, including any changes to them during menstration.

    2- See another GP for second opinon.Hand over that list and ask, to be investigated.

    3- Get referred to Gynacology for tests and ultrasounds

    4- Get referred to Pain Management.

    These things are treatable, I will never say they will all stop but HOPE is alwasy there.

    1 - Fibroids - oestrogen imbalance causes them.

    2 - Hormonal imablance - thyroid plus fibroids can tip the balance

    3 - abdominal pain - fibroids, plus thyroid attribute towards it.

    4 -Sciatica - which is no doubt worsened by the fibroids pushing on the nerves, Yes its easily done as simple lean on it.

    5- Thyroid - longer you are missed, the longer it can take to settle down, especially when there are other issues such as oestrogen imabalance,

    How to treat fibroids = Worse case, hysterectomy. Best case enforced menopause by gonadotropin-releasing hormone injections, simple contraceptive pill to correct or block the oestrogen.

    nhs.uk/Conditions/Fibroids/...

    Uterine Fibroids.- worse case, surgery to remove them - best case contracpetive pill including the ring or any IUD. or enforced menopause by gonadotropin-releasing hormone injections

    women.webmd.com/uterine-fib...

    Dysfunctional Uterine Bleeding - Worse case endometrial ablation, best case contraceptive pill. or enforced menopause by gonadotropin-releasing hormone injections.

    women.webmd.com/tc/dysfunct...

    Sciatica- worse case surgery, be it a laminectomy or fusion surgery - best case nerve blocks or effective pain killing treatment. Cognitive behavioural therapy (CBT) - Physiotherapy.

    nhs.uk/Conditions/Sciatica/...

    One note if you get a Paina Mangement Dr tell you its in your head. Tell them yes it is as that is where the pain signals that are sent via the nerves go to, to the brain, aka your head. Now thats been addressed now tell me how to shut or slow down these pain receptive signals?

    Ive seen good and bad Pain managemnt and heard all kinds of things, that now make me laugh, At the time I wanted to rip their sanctimonious heads off.

  • Thank you ravenhex. I do know about all these conditions. I know about the treatment. I am a nurse, I have degree in health studies. I thought long time about uterine fibroid embolization( i know who is best in uk but I have no money to pay)

    My main problem is that I am aware of all the conditions and possible treatments but I cannot find any doctor in uk that I can totally trust. It is lack of good doctors that is the problem.... At the end of the day if I need a surgical intervention despite my knowledge I cannot perform surgery on myself... I have already seen gyneacologist and she was totally unaware, I have seen NHS endocrinologist that kept making basic mistakes... It's not me who doesn't know. I do everything that I can to get better but to find a really good doctor here is almost an impossible task... I am trying to look fir help via private health care but it takes a lot of time as I do not have much money so I need think how to gather finances to pay for my appointments.

  • Edysia, When I phoned Dr P's office today to enquire about the chances of you having an appointment sooner rather than later I was told that he is in another part of the country this week. You mention that his clinic is far away from where you are but it could be that he is nearer you this week. Please ring and explain your situation and how you are feeling. In my experience, Dr P isn't just doing his work for the money. Please give him a chance to help you. He may be able to fix you up a little in the short term so you feel able to scrape through your exam. Obviously it will take longer for you to regain your full health but sometimes we can pull things out of the bag unexpectedly. This will only have a chance of happening though if you phone his office. Please try. x

  • Thank you mstp. I really appreciate your help. It is so lovely that you care. I leave in East Midlands. I can't ask dr P. to see me without paying him. I could never do that. Plus it's his job, that's how he earns his money I don't think he would do it for free.

    I am afraid that it's too late to fix me for my exam. I can't even get my blood tested recently because the only GP that was testing me from time to time is off sick and I don't know for how long. I can't see others GP as I am having a battle with them over what they did to me. I tried to find other surgery nearby but they all had bad reviews.

    I won't make it. It really feels this way...

    I am sorry I am feeling really low...

    E xx

  • Edysia, why don't you just do what mstp suggests?

    CALL Dr P's office. You don't have to say 'look Dr P can you cure me for free?' Just explain your predicament and see what they have to offer, if you don't try you don't know!

    Also, I understand how important the exam is for you, if you don't do it/don't pass it then all your hard work is 'gone' as you will not get your qualification, however life is a lot more than getting that qualification and if you don't help yourself no one can.

    I don't want to be 'harsh' on you, but you do have to have some hope left in yourself to make it through.....it's 'life', look at those who recover from cancer/alcoholism (I know it's very different from cancer) etc, they ALL have ONE thing in common: they had some hope left in them and they did not give up. If you give up no-body can help you.

    All these messages on your blog are a testament that there is support there, but they also show one thing in commong: you have to want to do it!

    I hope you can find that little bit of strength left in you, it is there, you just have to find it xxx

  • Hi Edysia, You are a nurse. If I was Dr P I would be thinking that you could repay me in the future by using all your insight and knowledge to help other patients facing difficult times. If I was a betting person I'd put money on him thinking that money isnt the only way to pay for treatment (AND NO I DON'T MEAN THAT!! AFTER ALL YOU HAVENT GOT THE ENERGY ANYWAY HAVE YOU.) No seriously, I bet he will think that you can repay him by helping others at a later stage. Come on, make that call this morning and, if the line is engaged, keep pressing the re-dial button.

  • And thank you so much RAVENHEX for trying to save me so desperately xxxxxxx

    Lots of love xxxxxx

  • Hi Edysia

    You had me very worried about you last night hardly slept a wink thinking of you.uand willing you to be ok

    I was so happy to see you have blogged again

    sending you love and a hug

  • I never pay for private health. Likewise my murrent medical state will not be met by any policy, In fact I am refused to have any health insurance policys, same as life insurance policys.

    The PCT, can agree to send you to whom you wish to see . Your Dr can make ask them, giving them the details why you need to be seen outside your own area.

    The fact is NHS can send you abroad if needs be, and it does. The Maya Clinic is one such place.

    I saw a Dr at St Marks in London. I'm in the Midlands so it is not in my area. My GP wrote to the PCT and they agreed due to me needing specalised Drs.

    How I got to see the St Marks Dr. St Marks is THE World expert in bowels, twisted or other such lovelies I have, they get referrals from Australian patients to be seen.

    All I did was, look up my particular medical need, that was for bowel and absorption through17 twists stuck via adhesions .

    Then I looked up a Dr or hosptial that specialised in it. Google is a lovely friend to use.

    I'd then look up Drs and their email contact addresses or secretaries phone number. I introduced myself, explained my medical issue, asked if that was in their area would they see me, or if not in their field, did they know of anybody better placed for me to ask to see via my GPs referra.

    Only 1 Dr I never heard from out of the 50 I asked. They either agreed to see me,on the NHS and gave me a email stating if my GP referred me to them they would see me on the NHS. Or they put me in touch with somebody who could. All the ones I contacted were very helpful and understanding.Some even gave me advice to use to get proper treatment and some even told me to sue my previous surgen for refusing to see me post operative.

    I then handed over the email with their consent and my GP had no choice but to refer me or put my request to the PCT who sanctioned it.

    Being a pain in the Drs butt is always worth making them wince for. They soon move Mountains they put up, to get your off their backside.

    Worth trying. Paying for Private treatment is OK when you can afford to. I for one cannot. I pay National Insurance so have paid my dues to use the NHS.

  • You have been through a real hell. I am so sorry to hear this. It's awful. I am glad that you received help, sad that with some things a bit late .

    E xx

  • Just checking on you again please find some strength from the replies you have received

    you have been given some good advice from a lot of people on here

    Please listen to Nobodysdriving harsh / kind words dig deep and find the will to carry on

    You have nothing to loose by ringing DR P whats one more let down if it goes nowhere but its worth a try

    sending you a hug and my love again today xxxxxxx

  • When I was in a terrible state a friend offered to take me to A and E, told me to collapse in the waiting room, talk of palpitations and chest pain and then to hopefully be admitted. We did wonder if that would at least make them test for all sorts right there and then. I'm not suggesting it necessarily for yourself but it is something I've wondered about many times.

    When life feels so very empty and harsh a shut down period is often the minds way of taking some time out deliberately. It can be a self-preservation method. It often gives us a short time to regroup our reserves just a little.

    Even though you feel so lost right now, know that so many people here really do understand that feeling of futility and want only for you to find a tiny ray of light that may help to see you through another day.

    Don't worry about getting replies out to us other than a 'I'm still here' once in a while. Conserve what supplies you do have.

    If you have no energy for anything else then try to just eat and drink and sleep and time will hopefully recharge you just enough to feel a little more strong.

    We're all behind you.

    xx

    (Is there anyone in her area that could help out on a more practical level?)

  • Wow reading this thread makes you realise all over again how many people struggled and are still struggling with the NHS system......

    Ravenhex has given you some fantastic advice and yep consultants secretaries phone numbers are on relevant websites. If you have the energy, please do this but if you haven't maybe a friend could help you. Or put everything in an email and email all the relevant people.

    I have been ill for so long but I can see a glimmer of light at the end of a very long, dark tunnel. I have stopped processed food and today I should have been away having a fun time in Edinburgh with a bunch of friends and watching the Scotland v Welsh rugby game BUT my body needs rest and once I get better their will be lots of time for fun. Today I am eating raw fruit and veg and drinking lots of water and later will be doing a liver flush!!

    Edysia, you are an intellegent woman who already has a nursing degree and also doing psychology and once you get well, people like US need people like YOU as you will totally understand the frustrations first hand.

    I did email my medical history to Dr Myhill in Wales....... I haven't met her in person as I live in Aberdeenshire, Scotland but she helped me to get back on my feet within days of taking Westhroid..... I think she charges £80 and can send a months supply of whatever meds you need to see if it works for you........... It may be worth dropping her a line and tell her you are a nurse and studying psychology.............

    We are all with you.............

    Sx

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