Where are the success stories?

Is it my imagination or is there no-one here that has had real success with their diagnosis, treatment or outcome?

How many of us are there on here - let alone on other blogs etc?

I understand that it will, by default, be a place where people are mostly looking for answers but is there a number somewhere of how many people are using this paticular site?

If each of us individually created our 'life histories' of how we came to be here today and collated it somehow surely the medical temple that is the substandard NHS (in this particular dept - not knocking it in other ways necessarily) would have to listen.

Thank goodness ThyUK is working on our behalf but seriously how is it that other self-help forums are full of basic queries and questions on how 'the treatment works' or 'what I can do about this symptom or that issue' while here it is riddled with members of the general public trying to get stable information.

Appreciate that it is a complex subject naturally, but I suppose I'm still in shock that this condition in all of its guises still seems so elusive.

Some charities/forums have professional input or respected members that fully understand the condition and advise accordingly. Not that I'm implying in any way that we (esp those who are admin etc) don't know ourselves and the condition best at all - but why has the subject of thyroid function become completely lost in the midst of scientific endeavour?

Who will ever take us all seriously?

26 Replies

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  • I was just thinking about how to get the lack of knowledge about the condition brought to the attention of the health ministers or professionals, and came up with an idea, still early stages and i should try to get some sleep... doc appoint in am. I will be letting TUK know of my idea if still valid in am. I will let you know . Is it louise I talk to ?

  • Hi

    Please direct your initial contact to enquiries@thyroiduk.org for the attention of Lyn Mynott our CEO/Chair. We welcome all suggestions. :-)

    If people can also offer time and/or financial assistance to get the ideas off the ground this is hugely appreciated as we are desperately short on both.

    Thanks! :-)

    Louise

    x

  • Thanks Louise, will do

  • Some links which might help:

    Main website with loads of information for people and details - in our Annual Reports - of everything Thyroid UK is doing to help people and spread the word - thyroiduk.org.uk/tuk/index....

    Case studies - thyroiduk.org.uk/tuk/get_in...

    Videos - thyroiduk.org.uk/tuk/get_in...

    Info on how the Scottish Parliament are taking the situation seriously:

    thyroiduk.org.uk/tuk/news.h...

    Louise Warvill

    Charity Secretary

    Thyroid UK

  • And not to forget those experts advisers and Patrons of Thyroid UK including Dr Chris Steel, our newest patron.

    thyroiduk.org.uk/tuk/About_...

  • Thanks Carolyn, (CC Louise W)

    Thanks for the info, I think TYUK is a fanatasic and very informative website and support, I do hope I havent upset anyone or trod on anyones toes,

    FF

  • Thanks Louise (cc Carolyn)

    Thanks for the links, amazing work I didnt know how much you all did.

    I think TYUK is a fanatasic and very informative website and support, I do hope I havent upset anyone or trod on anyones toes,

    FF

  • Well so far I am a success story and I'm hoping it will stay that way! I had a large ugly multinodular goitre removed 10 days ago and can already swallow and breathe a lot more smoothly and my racing pulse has settled down. It's early days regarding my thyroxine dose and I'm getting paranoid that I will be undermedicated and develop problems. So far I have no complaints about the medical profession and feel that I have had great treatment. This board is great too!

    There are not many happy stories on the Internet and its rather scary for people thinking of surgery or about to undergo it.

  • I have a multi nodular goiter which although growing is not too large. I have been told it will be taken out if it affects my breathing/swallowing or for cosmetic purposes if it becomes too big. TSH is in range so my only monitoring is 6 monthly blood tests.

    Did you ask for removal? Any info provided would be most helpful. Delighted that you are feeling well:)

  • Hi holby. I had the goitre for 9 years and was monitored with blood tests, biopsies and ultrasound scans. Each year it had got bigger and about a year ago I asked to be referred to a surgeon who agreed it should come out. He arranged for further tests including a CT scan which showed my trachea was deviated because of it. With hindsight my breathing and swallowing were affected because I can breathe and swallow so much more easily now. I don't think I realised at the time because I'd had it so long.

    It's a difficult decision to make, especially if your thyroid hormone levels are ok because you just have to trust that they will be managed well afterwards. I was hyper the year before I had it removed. It's too soon to tell what I am now - still waiting for blood test results but I do feel a bit hypo.

    I am happy with the decision to remove it but on the other hand I probably could have carried on with it for a few more years.

    Take care

  • If you click on Directory on the purple bar, you will see a directory of members.

    At this moment it says:

    7860 members

    Whilst that is quite a number of people, the actual number of people with thyroid issues is over a million - in England alone (similar proportions in the other parts of the UK). So there will inevitably be a huge level of very basic and, unfortunately, rather repetitive questioning.

    Rod

  • Presumably there are as many again who have no diagnosis or a wrong diagnosis.

    Sally

  • I think most people use this site ONLY when they are not well and looking for answers - when they are feeling better they no longer use the site. Unfortunately there arn't to many that stick around when they have their thyroid illness under control as their help and experience would be invaluable to others. When you have been on this site for quite a while you see by the pattern of people's questions that they are making progress, getting their condition under control and then they seem to disappear.

    Moggie x

  • Unfortunately or fortunately (whichever) we do not take up resources in hospitals A and E departments and therefore are discounted. I have seen estimates of 250,000 peple who are suffering uneccesarily from hypothyroid with doctors treating poorly or not diagnosing patients. Until we take up these resources we will continue to be ignored as 'adequately treated'.

  • There would probably be no need for 'Support Groups' if the medical profession dispensed with the insistence that 'one size fits all' with regard to medication and allowed trails of alternatives to levothyroxine or gave people adequate doses to alleviate their symptoms completely instead of telling you that you have yet another 'condition' which is thus duly treated with yet another medication.Proper medication may also prevents other more serious diseases developing. Also, they should not diagnose you according to the TSH. Extract (shows you how far behind the BTA is on Research)

    A reference range is obtained by taking a large group of people in the population, measuring their TSH levels, and calculating a mean value. Supposedly, these people should be free of thyroid disease. What experts are now coming to understand, however, is that the upper range in the TSH normal reference range has included people who actually have mild or developing thyroid disease, and their higher TSH levels skewed the standard curve.

    This understanding led to the recommendation in January 2003, by the American Association of Clinical Endocrinologists, that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0." (Read AACE statement now).

    This was backed up by research done by the National Academy of Clinical Biochemistry, part of the Academy of the American Association for Clinical Chemistry (AACC), and presented in their Laboratory Medicine Practice Guidelines for the Diagnosis and Monitoring of Thyroid Disease. Read the Guidelines now). Late in 2002, this group reported that: "In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 mIU/L because more than 95% of rigorously screened normal euthyroid volunteers have serum TSH values between 0.4 and 2.5 mIU/L."

    thyroid.about.com/od/gettes...

    ***

    What an indictment when the UK allows a TSH to reach 10 despite awful symptoms before giving a trial/treatment.

  • Oh, yes, and that's another rediculous idea! This business of a 'trial' of T4 or T3. How long is this 'trial' supposed to last? The idea of treating hypo is that, over a number of month, or years even, you give the patient thyroid hormone in increasing amounts until symptoms have disappeared. If you say you are giving it a 'trial', it indicates that you don't really believe it is going to work. So if you don't believe it is going to work, are you going to continue increasing the dose? I think not. What is the point of giving a patient 25/50 mcg T4 and when they don't get better - or, as in my case, get worse - say oh, it's not working, so it's not your thyroid? That doesn't make any sense. That's not how it works.

    Sorry to go on, but I've been wondering about this 'trial' thing. That doesn't happen in France. Here it's more like: you're hypo, here's the treatment, come back in six weeks - or three months - or whatever. But here they automatically test TSH, FT4, FT3 and anitbodies when they suspect thyroid. This, of course, doesn't mean that the doctors are any more knowledgable when they make a diagnosis. lol People still have a struggle to get correctly treated and most endos refuse T3. But you're either hypo or you're not, none of this 'trailing' you seem to have in the UK.

    But maybe I've misunderstood? Please feel free to correct me! lol

    Grey

  • I doubt many GP's 'trial' at all. What I really mean is that despite having hypo symptoms - you get 'no it isn't your thyroid gland' your TSH is in normal range or they don't do a thyroid gland test whatsoever and you are left to get on with it. At least, if they know and understand clinical symptoms, they could always prescribe and see how you get on.

    First of all I was never diagnosed. They never did a TSH test. Neither the GP's, Two Ear Nose and Throat Consultations (private) and one procedure for a diagnosis of a 'post cricoid web' after a barium swallow which may cause me to choke if I didn't have a procedure -nothing there at all.

    The next ENT, despite me pointing to a lump at the front of my throat and complaining of severe nausea - the diagnosis was 'reflux'. An overnight stay in the A&E cardiac dept and discharged as 'probably viral' - no thyroid tests. Finally (after about three years altogether) diagnosed by a First Aider without the aid of a TSH test when I thought I was on the point of death.

    Prescribed levothyroxine and after about 4 months, I had a myriad of new symptoms and if I hadn't got info from Thyroiduk, I would still be very unwell and no doubt my 'new' symptoms would have been treated as 'other than thyroid' which resolved finally with thyroid medication - not levo.

  • There are success stories, of course there are, we just don't get to hear them. I 'met' someone on Mary Shomon's forum and we corresponded for years whilst she got her life back together after diagnosis - after years of ill health. She got better and now she's getting on with her life and is a success in her chosen field. But we don't correspond anymore. My guess is she doesn't want to be reminded of those years of struggle - who would!?! She just wants to live her life. There must be thousands more like her.

    But there are some who, when their health improves, want to put something back, and they start forums and sites like this one, to help those that are still struggling. Such as Lyn Mynott, and Mary Shomon herself.

    If we don't get the same sort of help from the medical community that we get from our fellow sufferers, I think it's safe to say that Big Pharma is too blame.

    Big Pharma controls the education that our doctors receive, and it is not in their interest for doctors to have too much knowledge of the subject. They make thousands out of us. In fact, in their own jargon I've heard, we hypos are known as the Milch Cows. Thanks to the bad treatment we get of our basic disease, they are able to sell us a million and one products to 'manage' our symptoms. Weight loss pills, anti-depressants, remedies for GERD, pills for this and pills for that - and let's not forget the statins!!! They are making a fortune out of us and they don't want us to get well if they can at all help it!

    So doctors aren't told about symptoms, they are taught that you can diagnose with the TSH test alone and treat with a tiny dose of synthetic T4. Just enough to keep us alive but not enough to make us well. But what gets me is the stupidity of doctors that they swallow this hook, line and sinker, and can sit and watch their sick patients getting sicker without once thinking hey! wait a minute, this isn't working... Because, obviously, for a lot of us, it isn't. But your average GP is no Dr House! lol And, apparently, the Hypocratic Oath no longer applies when your patient is hypo. And so we continue to suffer and rely on groups like this to get ourselves well. So sad...

    Grey

  • had to comment hunny, I agree with your post, its a money making scandal, yes i was given a trial, what a load of crap, 25cmg, my smptoms went worse after 10 weeks.

    I stopped then myself. It seems medicine and natural products are evidently in battle and one contradicts the other.

    i would prefere to take natural supplements though and even then i buy expensive ones, and to add the nhs wont test for the test we need, so we have to fund it ourselves, even with evidence we are still not taken seriously.

    I do agree with another post, though about patients getting well and do not share ther stories, as you know when we have bad days we are posting, seeking looking for help.

    It is teribble indeed, we need to all get together and petition out side parliment. we might not be heard, but we would surely make the papers. he he famous at last. xx

  • I'm glad to see a couple of 'success stories' have been added to this post and surely we must know someone somehwere who has finally got their diagnosis right, finally found the right treatment and also are now living well and happy.

    Scientific endeavour often requires that the outcome show a positive result and in it's absence we are continually quoted 'the reasearch showed this or that' in a negative light hence aiding their false belief that supplementation of ny form doesn't work.

    We're certainly on a sticky wicket but my point probably is that apart from getting all of us 'sickies' together to complain whether it be by going to the Scottish Parliament of by drumming it home to our individual Gp's if we had at least some who could say - look at me now, it does work, it can work and it will work if you just take the time to LISTEN then maybe the positive side could be emphasised.

    It is often those who have been there and made it through that are considered with more respect than those who are seen to be perpetually 'wingeing' about how ill they are feeling.

    People write books about how they made it in the end - never about how awful it is right now.

    I don't profess to know how to do this but if only we had an input form more people who could supply the 'evidence' that thier lives have turned around with the right help then perhaps we would have a new tack to add to the pot.

    If anyone was so inclined maybe a thread/page/blog could be started to gather this type of material somehow?

    An advert urging for support somewhere?

    Let's get that baby rolling!

  • Tulula, I can't help thinking you're slightly missing the point here.

    The success stories, for the most part I'm sure, are of people for whom the system works i.e. TSH testing and a little pill of levo. There are people for whom this works perfectly. But that is not the sort of publicity we want! If we push forward these stories the powers that be are going to say : there you are, you see, out system does work, it's you that are wrong.

    It's far rarer to find a success story that contains a 'difficult' (difficult in the sense that the usual treatments don't work) patient and an off-beat doctor moving heaven and earth to get his patient well. It's us difficult ones that come onto forums like these to find a cure for ourselves. If cure there be. And they know they don't have to worry about us because we haven't got the strength or energy to demonstrat outside parliament! lol Not many of us, anyway. And that's why very little gets done. We lack Protesting Power.

    Yeah, we could write books. I've often considered writing my story, but I don't think I'd come out of it very well! lol I'm not the easiest of patients - from a docor's point of view - I am loud, demanding, forceful, sometimes rude, sometimes verging on the violent, anything to get my own way. Who would take any notice of me? Who would read my book except other 'difficult' patients? It would be like preaching to the choir!

    And even if every doctor in the country read it and thought : Oooo she's got a point there! Would they do anything? Would they stand up to government and Big Pharma? Would the governement stand up to Big Pharma? How can we escape the tentacles of Big Pharma? That's the question. And I'm afraid a few books by a minority group just won't cut it.

    I'm sorry if I'm coming across defeatist here, but I just don't know the answer. I only know what isn't the answer. It's a big, cruel world out there...

    Grey

  • Of course Grey my thoughts were not to get all those who have had success with the 'standard' treatment handed out by GP's in straightforward cases who are doing well.

    My ramblings may well come very late at night when all is quiet and everything seems pretty simple.

    I also appreciate the severity of those cases where nothing seems to fit - I am one in point.

    Also, I accept that writing books may not help - it was a comment on the general finding that many success stories come about because of the use of alternative avenues.

    I do understand the concept of corporate power too very much.

    However, where there is a will etc etc and I think it a travesty that people become so disenamoured with the possibility of change that they feel all is completely lost forever.

    I personally will continue to hope.

    Thanks for the input though - always good to hear other's views.

  • This forum is run by the charity Thyroid UK thyroiduk.org

    Thyroid UK's reason for existing is to try to change things! Unfortunately it's a huge task and no matter how hard we work at it, it isn't going to happen overnight. But, little by little, it will happen :)

  • Hi Tulula I am a success story. A year and a half ago I was about to end my life thanks to the 'treatment' I got for my Graves. I found this site and found Dr S, started on NDT and have my life back. I am guilty of not posting often now due to having that life back. Seven years of desperate ill health drains you, when you recover, you just want to live. But I am one of the petitioners at the Scottish Parliament and I am fundraising for Thyroid UK. I can only do so much.

    I hear what you are saying though. When I first started learning just how big this scandal is, I was perplexed as to why there were no class action law cases. My anger and disbelief were over whelming. I don't know what the answer is. I just don't intend to stand still and do nothing. But I owe my life to this forum and I will say it loud and say it often until I die.

  • Ladadrew thanks so much for taking the time to add your comments to this thread. I'm so very pleased that this worked out for you and thank you also for keeping in touch with the subject via your support with the petition etc.

    Please don't feel guilty about not posting at all, you have less need naturally and that is wonderful news.

    I watched the video and was covered with goosebumps throughout - it was just so very unfair that people are pushed to such limits to get their voice heard in this day and age.

    Grey - this is exactly the type of news that I meant.

    Let's hope that something will eventually be done permanently.

  • I suppose I am a success story but I still joined this forum, look at postings although I rarely reply but have read some useful snippets and am a member of the British Thyroid Association.

    I am 62 years old not and have had two chldren who show no signs of thyroid problems although I am given to believe that mine was hereditary on my fathers side and only females were affected but not all of them.

    I had a nodular goitre which appeared about age 12 as a lump the size of a large pea and just got larger and larger. I had it removed at age 16 and have been on thyroxine ever since with checks up a few times a year via a blood test.

    I do have OA arthritis in quite a few joints, slight scoliosis which I also noticed in my teens but nothing was done about it and and after a recent dexa scan have been told I need to start on an OP drug. So other things are not so good and may in some way be connected - who knows - but the thyroid op and treatment seems to have "suited" me for which I am grateful.

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