Introducing a new treatment for the management of male lower urinary tract symptoms (LUTS)
Click on the link below to see Professor XXXX, Consultant Urological Surgeon from XXXX Hospital, discuss a consensus statement* formulated by a group of urologists and GPs in order to provide clear guidance on the optimal management of male LUTS in primary care in line with current NICE guidance.
*This item was funded and initiated by Astellas Pharma Ltd who nominated the authors, organised and funded the consensus group meeting and checked the consensus statement for factual accuracy
There are 'A' scientists and 'B' scientists, the 'B' scientists try to explain in simple language what the 'A' scientists are doing, of course it all means nothing because they are speaking about illnesses they do not have and have no idea of the consequences of....
Generally speaking, physicians at medical schools take an enormous pay cut to be able to do research. If that same surgeon went private he would likely triple his income. There are easier ways to make money than whoring yourself to big pharma. Not to mention the only true way to know if he's been bought would be to look at the primary literature he has published on the topic and have a background that allows you to understand the methodology and results. Also, you can look at the rules that are in place where he works about private funding. A lot of places make it impossible to take a true handout especially in academia. In short, there's much much less shady research going on than there used to be, and if it is bogus, the drug won't be prescribed anyway in lieu of trusted go to meds that have proven efficacy and are probably cheaper.
The trouble is that levothyroxine has become thought of as a 'trusted go to med with proven efficacy' even though it often isn't effective! And of course it's cheap!
Levothyroxine is the trusted go to med with proven efficacy because of just that, its proven to work in MOST people. To say it is often ineffective is simply incorrect. It is ineffective sometimes. Don't let the patient population represented on these boards skew your perception of the epidemiology of the umbrella disease of hypothyroidism. The fact is that most people who retain the ability to convert T4 to T3 do very well on T4. People that this isn't true for represent the exception, not the rule and its important to remember that.
More to the point, HarryE, we're discussing the the presented problem of big pharma buying out academia which, I will reiterate, happens much less frequently than many of you probably think. I ask you all, could you be bought with research money that you can't really use for yourself anyway? Could you be bought in general if you've devoted yourself to a lifetime of schooling to help people? Would you put your reputation as a physician, researcher, and human being on the line for a few quid/dollars? If you answered no, why do you think that the majority of people doing research would? If they were in this for the money, they'd have gone into banking. It takes way less school and is way more lucrative. Tangent aside, if you don't want the old proven meds that you claim don't work, and you don't want the new meds with the "bought an paid for research," where does that leave you. It sounds to me like that line of thinking is a larger barrier to effective treatment than any complaint you've just listed.
The problem you're describing is a problem of policy. If the doctors had the autonomy to follow a thought or line of questioning and were reimbursed enough to head full steam into looking into out of the box patient problems they may not have any experience with, then I'm sure they would. Or, lighten the policy restrictions that keep patients form seeing specialists that would have a MUCH better idea what's going on rather than letting some family medicine GP fumble with something that's completely out of his wheel house.
Ok, the policy is wrong, granted! But my endo knows nowt either! I couldn't get ANY meds. I haven't been off sick for almost 3 months for fun! But this sort of thing doesn't really help the image of the pharmaceutical industry does it?
And I completely completely accept that it works for most people who are prescribed it, but it has meant that no one seems prepared to consider any alternatives, despite research.
As a person who takes only levothyroxine, and has appeared to do well on it, my brain struggles to accept the "proven efficacy" without adding a point or two.
Although the fundamental ability of levothyroxine to work for me seems to be there, factors do appear to get in the way of that working as well as it could. In other threads here, people (including me) point our fingers at the differences between the actual levothyroxine products. Actavis seems to under-deliver. Mercury Pharma seems to cause a transient unpleasant peak followed by fading out before the next dose. And when it was available, Teva caused severe under-dosing.
Perhaps it is not surprising that there is low faith in levothyroxine?
At present I am getting over the problem by buying my own Aliud product from Germany.
Many here have actually seen specialists. (Though if we tighten the definition from "any endocrinologist" to "endocrinologist with special knowledge of thyroid" the number would reduce.) We don't see many good outcomes reported. The one occasion I went with someone else to such an appointment, I was staggered by the complete lack of understanding or ability to help. The GP at least wanted to help!
You don't see many good outcomes reported here largely because this forum represents the patient population that is having difficulty fitting into the box of the majority of people who do respond well to levothyroxine. Those people get treated and see no reason to hop on a forum like this for advice on what to do next. You always have to keep in mind the population you're referring to in order to conclude whether it's a good representation of the target patient population.
I meant that we do not see many good outcomes directly from the appointments with specialists - rather than a lack of good outcomes in the end.
What has become abundantly clear in my time here is that many patients have thought they were doing well, that any remaining issues were not thyroid-related, sometimes for decades. Only to start wondering and end up here. In the end things as simple as changing make of levothyroxine, time of dosing or actual dose have sometimes been beneficial. Adding in our favourite "have you though of ..." issues such as iron/ferritin, vitamin B12, folate, vitamin D (and others, I am not trying to be exhaustive here) quite a few more improve.
The point being that they indeed saw "no reason to hop on a forum like this" until something changed - maybe how they felt, or reading something, or having a GP who reduced an already barely adequate dose, ... Yet, all too often, there has come about a realisation that they had never really felt right.
Makes me wonder how many really do feel right? And how many think that whatever isn't right must be something else?
I would agree the pharmacokinetics should be better analyzed and incorporated into treatment especially for the older drugs out there. Also, you bring up one of my favorite problems to point out about medical education and that is physicians are taught very little about vitamins, trace metals, etc. Its a travesty but it's true.
There's one main reason I can think of for a reduction in levo dosing and that is otherwise tolerated by a patient and that is the development of cardiovascular disease of some sort. In this case, it becomes an issue of weighing out the pros and cons. I've noticed from talking to many people on these forums about their health that they only ever post a fraction of the problem. People looking for advice should keep a current list of all of their latest diagnostic tests, medical conditions, and symptoms with date of onset in their profile. Its easy to point and say "I can't believe that evil doctor lowered that person's levo dose!" But you always have to consider what motivated the change and that is often the part that is left out of the equation on forums.
Also, to add to your questions at the end of your post, it should also make you wonder if there is more going on with their health than just a thyroid issue? Or how much of what the person is feeling is truly thyroid related? Does the doctor have the correct etiology of the underlying thyroid disease? I would argue that considering the possibility that it is something else gone wrong that is bothering them is an important thing to do. Especially when there is a deterioration in well-being after effective therapy has been established.
Several thoughts come to mind when looking at this thread. I note that you have, gradually, moved over to the 'if they're not well there's something else going on' school of thought. This is a classic response - admittedly it has taken you a while.
The reason so many appear to do well on levo is that they accept the doctors' statements that they cannot expect any better! It is only when they realise that they have been duped into thinking that they are going to be ill for the rest of their lives that they start to realise they have been accepting 'second best'.
I am a case in point. I have been hypothyroid since I had a TT at the age of 36. I was on T4 monotherapy until I was 60. I had come to accept that I would never again run for a bus, never again be comfortable walking up more than 6 steps, never again be less than three stones overweight despite almost constant dieting. I was used to feeling my heart racing and assumed I was just unfit because I could not exercise without pain. I never complained, worked full-time, but struggled to function once out of work, my home was basically a shambles. I struggled with almost constant depression but thought this was as good as it gets. I was one of those for whom Levo 'worked'.
No, I wasn't. It took one adjustment to my dose, from 150 to 100 mcg per day - on the basis of the TSH - for the whole house of cards to come crashing down. I had an enlarged heart, chronic asthma, TIAs, my Cholesterol soared to 9.7 and then 10.7 - and I became bedridden. Being given statins made things worse.
After 8 years of this misery I asked my GP to put my dose back to 150 but it was too late, the damage had been accumulating for many years and was now out of control. I had become his most familiar patient, taking asthma drugs and inhalers, blood thinners, PPIs, strong painkillers, statins, IBS tablets, Sleeping tablets, and having heart investigations, chest x-rays for a constant cough, and sleeping 20 out of 24 hours. He diagnosed me with depression - I was depressed - because I was leading a 'half-life'.
I have now taken responsibility for my own health, by seeing a private consultant who confirmed that I was suffering cumulative damage from years of T4-only treatment, and I am now on T3-only plus various supplements. My blood pressure is normal - it does not go dangerously low when I stand up - I am leading a normal life including a 20-minute walk every day. I have already lost over two stones in weight. I am no longer depressed. I have taken up my old hobbies of knitting sewing, and writing poetry. Cholesterol 5.7 without statins, IBS just a memory, asthma gone, pain no more than any 69-year old would expect - less, actually, I think. I am a different person from that shambling old hag. I not only feel younger than I am but I am constantly being asked what face cream I use!
T4 monotherapy can in many cases appear to be working: but the slow, insidious damage will show in later life. I suspect that the only people who can lead a full and healthy life on T4 monotherapy are those whose thyroid still produces enough T3.
You see, no-one seems to be interested in finding out WHY the healthy thyroid produces T3 at all. There has to be a reason. The fact that it does produce T3 suggests that it is needed for something. Could it be that it helps the T4-T3 conversion process? Whatever the reason, it has to be there for something. I know that without a thyroid, even on 150mcg of Levothyroxine, my T3 was right at the bottom of the 'range', which is arbitrary anyway, since no-one will ever know what my healthy T3 level was.
So, you see, I strongly suspect that a lot of people who seem ok on T4 monotherapy just put up with second best, like I did. I was a success story - or not!
Wow marram, what a story. How sad it is that this is allowed to happen. I work for the NHS and I have to say I am now seriously disillusioned! Maybe I need to work for TUK??
maram you are saying that we who do well on T4 are accepting second best and are suffering in silence. Not true, I happen to be doing very well, work full time and have an active busy life. It seems those that are well are not welcome on the forum as time and again we are made out to be somewhat stupid as we can't accept that we could be even better. Yes I had other issues and it did turn out to be "something else going on " which is shortly going to be fixed. Just because we have symptoms it doesn't mean it has to be thyroid.
Well I think I (usually) do OK on levothyroxine alone. If I wanted to try desiccated thyroid or liothyronine it would take me all of twenty seconds to grab some - but I don't.
I do, however, feel there are issues about the way in which the levothyroxine is delivered (and, in the case of Teva, not delivered) by the various tablets.
Perhaps you noticed that I said "The only people who can lead a full and healthy life on T4 monotherapy are those whose thyroid still produces enough T3"
That statement in itself acknowledges that there are people who do well on Levothyroxine.
No-one, least of all me, said anyone is stupid. I do not ever use that kind of language.
Of course thyroid patients can be ill with something which is not thyroid related. However, if a patient continues to have classic symptoms of low thyroid levels than it would be a good doctor who looks at the thyroid before plying the patient with anti depressants, statins, beta blockers, anticoagulants, PPIs, asthma drugs and inhalers and strong painkillers.
It would be quite nice if doctors were also aware that patients with autoimmune thyroid problems may well have other autoimmune diseases, or may well have deficiencies of essential vitamins and minerals instead of just dismissing their concerns as psychological.
I hope in this we might agree.
The topic of this post is, as was pointed out, if we can trust doctors. I think my example, though I did not say so in so many words, indicated that many of us cannot. Again, some may have had a totally different experience.
(I am editing this post to make it clear that I an responding to hypohen, since it has appeared out of sequence)
I have no thyroid so do not produce any T3 of my own and i also have Graves but do very well on T4 only. The symptoms i was experiencing in the last few years could easily have been thyroid but the tests were normal and correct. This reply is to maram .
Not sure what we are talking about now but the point was my tests were correct my problems were not thyroid related. I actually now have parathyroid issues which is nothing to do with thyroid but does result in very similar symptoms. Forgot to mention my sister has also been thyroidless for over 35 years and also is very well on. T4 only. I do trust my doctors, i choose carefully who i see.
No, it doesn't have to be thyroid 'only' but because many gaps are left in diagnosis,treatment and research we are left floundering in the dead wood area that medics ignore.
OK, so you don't get a good reception challenging the position on TUK because extraneous elements are only going to muddy the water further in an already black pool of doubt, so maybe that explains some of it.
What though, explains the medical professions lack of interest in the whole business- that leaves 10,000's floundering and ill?
I sincerely doubt that aetiology is actually investigated in most cases. Even presence of Thyroid Peroxidase antibodies or Thyroglobulin antibodies provides limited evidence - and very often people get tested for only one of these.
For myself, I have no idea why I became hypothyroid. Nothing has ever occurred to me that seems likely. And no doctor has ever looked or thought at all.
I have a suspicion that deterioration after a few years of levothyroxine therapy could occur because of impaired absorption of, for example iron and B12. On the basis that some with adequate B12 could take quite a few years before getting low enough to be concern, that might fit in some cases. Perhaps most especially likely where an autoimmune issue is recognised and there could also be autoimmune gastritis.
Perhaps when you've finished your training you can come back and dispense your wisdom a bit more.... why are you on this forum? Do you have a thyroid problem? Meanwhile I suggest you read Stop the Thyroid Madness and Drs Peatfield's and Skinner's books. You could perhaps also try Dr Mark Starr and Dr Broda Barnes.. Then you can come back and tell us how it is. Meanwhile, see my point above, there are massive issues with patient satisfaction with levothyroxine (my mum is one, her thryoid is 'fine' but she has chronic migraines, constipation and on and on) and I could personally name 40 people I've met, not on a forum who are on levo and don't know their 'other problems' are related to the main event. When I tell them, they usually gasp and say, 'but I feel like that'. I've seen this story countless times over and over again.
Patients are sent away and told it's not their thyroid, or their dose, or levothyroxine and unlike lots of us on here, they don't have the know how, the confidence, the assertiveness to question their doctor. I don't believe levothyroxine DOES work in the majority of cases, I think the research is poorly designed and concerns itself with 'restoring euthyroidism' - ie getting nice blood tests. When research asks about patient satisfaction, it's low.
I believe it's estimated by the thyroid charities that 15% of thyroid sufferers don't do well on Thyroxine. Your words 'MOST people' would appear to be incorrect.
May I ask whether you've been successful in your thyroid treatment? Were you diagnosed quickly?
It's taken me 4 years to get a diagnosis of hypothyroidism. Words fail me.
I would argue that my use of the word "most" is extremely correct in this scenario, using the strict definition of the word as the bar. No I was not diagnosed quickly and I didn't respond to normal dosing of T4, only extremely high doses worked and it took years to find someone who would step off the beaten path. It is unfortunate it takes this long (4 years in your case) to find some resolution to problems like this, but I assure you had the physician known better or been put within a system that allowed him/her to work outside of the guidelines politicians make, you'd likely have been treated much sooner.
But again, the argument I was making was not about treatment, it was about research and people pointing fingers at physicians. I'd hate to tell you this, but the physicians are the only friends you have in the crazy world of healthcare. No one else really cares if you feel better or not so long as they feel fine. Your outrage is best pointed toward politicians who call for the formation institutions and policy that work against the years of training and experience the physicians have. The fact of the matter is that hypothyroidism was probably treated better before we could accurately test for thyroid hormone levels and TSH. Why? Because the endpoint of treatment was based on a reported resolution of symptoms by the patient and not getting you into a window of ranges that could physiologically mean absolutely nothing to you. Who do you think pushed for that switch, the physicians that had been doing this for years or the people who needed some sort of evidence to justify healthcare spending.
Furthermore, using information disseminated by a charity and not a peer reviewed scientific article is just a poor way to go amassing your information. These people can say whatever they want without anyone to truly argue against them. If you're going to make arguments about things like this, always consider the quality of your sources.
All of that being said, I fully acknowledge a gap in the treatment of thyroid disorders. I personally side with the old school method of a symptomatically driven treatment plan. The fact of the matter is that treatment is less in the hands of the physicians now than ever before. That is the problem.
I don't know about any others but I personally have not felt belittled by MDin Training's posts. I can sympathise with/understand most of what I have read - with great interest.
I must say I find 15 % rather too high a proportion to be ignored.
Also, I thought Thyroid UK whilst being a charity, was supported and advised by knowledgeable people, including medics and, if we are talking mainstream, research-based medicine, is the NHS Community of Choice for Thyroid Disease.
I was very interested to read that you subscribe to the old-school symptomatic treatment of thyroid disease. Sadly, a reported resolution of symptoms by the patient is now qualified as 'subjective', i.e. negligible or unscientific. How many of our doctors would be brave enough to consider symptoms in the treatment of thyroid disease? I can't blame them if they don't. Some of the doctors advocating the old-school symptomatic treatment have been disciplined or/and hounded out of the profession. I think many of us are on this forum because our symptoms are not being heard.
Mine are certainly not being heard. At last count I had 47 of them, and was told categorically that I would not find any doctor who would treat me with a TSH o f 4 and antibodies 100 times over range. I certainly haven't come across any of these physicians who have their patients' best interests at heart. I have been spoken to as if I am a neurotic halfwit! Which I categorically am not!!
I sympathise. Different schools of medical opinion can also be hard to deal with. My GP was good enough to put me on a 25 mcg trial of levothyroxine when a private blood test showed 400 x the maximum level of antibodies. Endo took me off again as 'you can have 10,000 times the level of antibodies as long as your TSH is in range'. (symptoms were not discussed). It doesn't seem right to me to allow the thyroid to be attacked until it is completely spent and only then can treatment be considered.
I totally agree with your last sentence. I have Hashis and plenty of symptoms but 'normal' TSH, T4 and T3 levels. When I asked my GP and my Endo why they think it is good practice to not do anything until the antibodies have attacked my thyroid so much that it is permanently damaged and extremely hypo neither of them were able to give me an answer but neither would give me any treatment.
I appreciate that our doctors' hands may be tied due to medical protocol/ health care budgets but if we as patients are left to our own devices, that's exactly what we have to do: use our own devices.
They might be tied, although I don't think they are tied quite as much as they would have us believe, I think there are some cowards out there who don't have the courage of their convictions. But I do believe they should still be able to muster some compassion and some common courtesy. I haven't seen either!
The guidelines published by the BTA and BTF were/are drafted by senior doctors and not politicians.
Dr. John Midgley who invented the TSH has written to the Scottish Parliament saying TSH was designed as a diagnostic tool to aid a diagnosis of hypothyroidism or hyperthyroidism along with presenting symptoms and it should not be used to determine diagnosis or treatment alone.
I'm leaning strongly toward neurosurgery at the moment. Some of the things we're on the cusp of doing in that field are just unbelievable. Though my research will probably be primarily in neuroendocrine and endocrine disorders if that's the route I end up taking. Generally speaking, finding out more about the chemical soup that bathes all of our tissues is something we need more focus on. There are a lot of immuno guys doing great things in that area. I imagine we'll see immunology overlap a lot more into more well established fields in the decades to come.
That link you sent me was a fantastic read, thanks for posting it! If you have more like it, I'd love to read them.
You have certainly brought matters out of the woodwork here! In general I agree with most of what you say, but have the following comments.
1) "most people deal quite well with T4 monotherapy." This in a percentage definition is true, but the percentage who don't is not negligible. A "one size fits all" diagnostic approach cannot satisfy the latter group.
2) Even in the "satisfied" group we can't be certain how satisfied they really are. Old folk like me tend to accept what the doctor (GP) says and especially the dismissive "well what do you expect at your age". Such a dismissal can lead to less than optimum outcomes and QoL.
3) Diagnosis of thyroid problems by TSH screening has been now shown to be mistaken and suboptimal - disastrous for some patients.
4) Diagnostic tests for free T4 and free T3 are in chaos. Test procedures can range from the completely invalid to the excellent and there seems to be no control exerted by the medical profession to ensure consistency.
5) The regulatory authorities, incompetent manufacturers and the medical profession are equally culpable in letting this situation continue - after all the end users could at least use their purchasing power to ensure only those products that were adequately accurate and precise were acceptable.
6) The thyroid literature is full of authoritative papers that are frankly garbage and bogus, and through the gaping illogicality of which all the king's horses and all the king's men, Buckingham Palace and a few more thrown in could pass with ease. Sadly these have produced "givens" in thyroid thinking which are utterly bogus. And have led to the present incorrect paradigms relating TSH, FT4 and FT3. MDintraining may need retraining in the future.
7) The medical profession like all professions is prone to a defensive attitude against anyone else outside who wishes to point out error, and only after a long time will change opinion.
8) In any other scientific discipline, eg physical chemistry, practitioners would roll about in hysterics over the lack of basic understanding in thyroiology of how tests work and what they mean.
With regard to FT3&4 testing, is there a method you consider the best, and if so where can we get it? Or is it more a case of using the same lab so that you can simply compare progress or deterioration? Thanks
Sorry for the delay but our gardener put his spade through my cable connection. The very best FT4 and FT3 tests are on the Vitros ECi automatic system. This is marketed by Ortho Diagnostics. It's OK to use other test sources so long as you always use the same ones for diagnosing - ie the bias whatever it is is constant over the range. The actual figures may be out of spec but they compare with each other sensibly. The real chaos is in the incompatibility of tests from the various manufacturers.
Dio: One of the main inputs into the equation is historical. I'm not sure if Thyroxine was invented by US drug makers [I suspect so] but the trials on TSH and the effecacy of treatments were done on the mixed race US population whereas European blood is different.
Methylation cycle info is becoming more available- last year I remember a report coming out tha said 40% of European people have a deficiency on the genetic front. Many different dna strands were involved. It's not surprising that diagnosis and treatment in another culture will lead to mistakes- but with medicine in it's current state [high tech, Gov't/Pharma driven] against the old medical adage of 'Do No Harm' - the former wins hands down.
For Dr In Training- nice to see qualified reasoned arguments but your wish to have a career will eventually clash with your ethics- you will not be alone in this.
Many UAT people are truly alone, as I am.
Few medics step in the gap- for reasons well known,on here.
Neurosurgery? - please make sure patients have Thyroid B12 and Vit D tests first - despite suspected carpal/cubital tunnel, adhesive capsulitis, nerve entrapment orTOS symptoms!
And please hang around, your posts are helpful to us, hopefully helpful to you too. JD
Oh my goodness I had no idea! Thanks for posting this Clutter, will be very useful when arguing with gp. I feel like printing it out and rubbing it in his face.
It wasn't Dr. John E. Midgeley who invented TSH, but the inventor did say it wasn't devised as a diagnosis and treatment model. If I can find the article &/or name of the inventor I will post it.
Chihiro the TSH inventor was Dr. Robert Utigar (thank you HarryE ). I still can't find the article I read but there is a mention in wilsonssyndrome.com/creator...
Just to correct the impression - I invented the one step FT4 and FT3 tests - two types, one invented 1979, the other 1988. These comprise 2 out of the 3 test types now conducted.
I would just briefly like to point out that the guidelines are not made by politicians, they are made by the medical profession.
Set by members of the medial profession like one notable Endocrinologist who has received many accolades for his achievements, mainly in the field of Diabetes, who shall be nameless other than an initial - Prof. AW. He has said that the majority of patients who have a normal TSH yet continue to complain of symptoms have a "functional Somatoform Disorder".
Does that sound like a doctor anyone could trust? On what basis would such a person diagnose thousands of patients with hypochondria with even having examined them?
Treatment IS in the hands of the physicians, it is they in the form of the GMC who set the standard and guidelines for treatment. The British Thyroid Foundation follows these guidelines. The doctors who have dared to treat according to symptoms in this country have been reported to the GMC, not by disgruntled patients, but by other doctors.
My impression from what has been said is that James is an American medical student studying in America speaking of the private healthcare system in the US. I'm interested in his views on the nhs but I'm not yet clear on how much he knows about it.
I think you have far too high an opinion of endocrinologists.... levothyroxine in a horrible drug too, and it 'works' in most people due to poorly designed research. There's lots in the literature if you hunt for it about patient dissatisfaction with levo in the same studies that talk about 'restoring euthyroidism'. It's also due to ill informed and / or unassertive patients not understanding 'your thyroid is fine your symptoms must be something else' is a load of total rubbish and believing their doctor. I have met many, many doctors and the majority are not interested in thinking outside the box at all. There are one or two exceptions but they are not the rule.
I also don't think doctors go into research for the money necessarily - they do it for the glory. And it's pride and arrogance that got us into this pickle.
Endocrinologists are supposed to be specialists - frankly the world would be a better place if they all retired early and left us alone.
And in my travels around, chatting to people you would not BELIEVE the amount of people who say 'I'm on thyroxine and I feel like that!!! I didn't know that it could be related'. There is a massive problem with thyroid treatment and levothyroxine .... patients just don't know it yet.
I know people who consider that they do "well" on thyroxine, and won't acknowledge that their other health problems could possibly be attributed to their thyroid disease.
They would tick the "yes" box if asked if they were doing well in their thyroid treatment.
And I know people who will continuously say they're not feeling benefit from any medication until they feel like they're flying high on narcotics. The fact of the matter is that more people will check the 'No' box than yes box because everyone assumes they could be feeling better than they are.
Or maybe your expert opinion is incorrect, and their other health problems are just that--other health problems. In which case you don't do them any justice trying to convince them it could thyroid related because in essence all you're doing is keeping them from receiving the care they need. If you have absurdly high cholesterol, you don't need more T3/T4 right now, you need a statin. Then once the high cholesterol is being treated, you go to see about altering your T3/T4.
i understand this and completely sympathize with you. im not saying you are one of those people, but they do exist. i also understand what its like to have the only thing fueling you through your day be outrage. but just point it in the right place. thats all i am saying here.
MDinTraining - do you, or have you ever, suffered from any kind of debilitating illness? Have you ever been fobbed off by doctors? It can be draining beyond belief.
I resent being told I have an "expert opinion". I am learning to live with an illness that dictates how I live my life. I accept this, but it doesn't make life easy, and does not mean that I shouldn't try to improve it in any way I can, surely?
Personally, I do not feel that I should be "flying high on narcotics" - I would just like to be able to get through the day feeling OK, nothing more.
I do not try convincing anyone that their health problems are thyroid-related, and do not ever remotely suggest that I am an "expert" in anything medical. I am one of the many who, without guidance from people here, would never have asked my GP for help with serious symptoms I had acquired.
I am now under the care of a cardiologist - I won't ignore their advice, I am not stupid. I nicely queried absorption issues with my endocrinologist - I am severely deficient in many vitamins etc. If I had "accepted" my symptoms because that's what other people do, I would be suffering very badly still, and getting worse.
Extremely high cholesterol is caused by not enough T4 and T3 so you've shot yourself in the foot there. Most patients find getting on enough and the right kind of thyroid hormone sorts out cholesterol. See my previous posts about which books you need to read.
And this patronising line that we are all a bunch of hysterics who just want to be thin and want to abuse thyroid medication is really offensive. Or want to be high, that is just ridiculous. And arrogant actually ....
YOU DO NOT KNOW WHAT YOU ARE TALKING ABOUT. And you certainly don't know enough about thyroid to be telling us all how it is. You sound like an endocrinologist (sure one didn't send you? LOL).
Please just listen to us and go to the Scottish Thyroid Petition pages and read all the of the submissions there. I think you are not in a position to making sweeping statements about 'everyone' - you are a trainee doctor and you haven't suffered a chronic illness.
And you know for certain I've never had a chronic disease huh? And obviously you know more than me about absolutely everything. I didn't join this forum at a whim, miss.
And in case it escaped you, my point was not aimed at directing anyone's care. In fact if you look at what I was saying in other posts, I said I believe in a symptomatically driven treatment for thyroid disorders. The thing you are honing in on is a completely different argument entirely which was simply that peopleshould refrain from pidgeonholing others into a diagnosis and treatment plan just because it kind of sounds like something they had happen and the treatment worked for them. There's an unbelievable amount of different diseases out there with symptoms that can resemble other disease states.
And, on another note, this post was actually at peace and had created a lot fantastic discussion until you came along and decided you needed to attack me about things you somehow managed to take completely out of context.
And let me tell you, no one goes into research for glory. Do you know who last year's noble laureate in medicine was off hand? Yea either do I.
Why are you not asking for help, if you have a chronic illness, instead of dispensing it. Scroll down for my longer reply to someone else, which is what qualifies me to disagree with you.
Rebecca, one person's (your) experience does not mean they (you) know it all.
The negativity and arrogance on the forum is going to drive people away, I have read several posts lately where members have been upset by negative replies which have gone completely off topic to their original question, one such being a lady being told not to have the surgery she was due a few days later, appalling situation for her.
MDinTraining is exactly the kind of member we need on the forum to bring balance to discussions.
I don't agree, but then we never do, I mean that nicely :-). I only ever share my experience which has been hard fought for. And I didn't tell that woman not to have surgery. I recommended she delay until she understood the implications. The fact she'd got on the internet to ask about it, suggesting there were some unanswered questions ...
I seem to remember she actually asked for post op recovery experiences not surgery advice, at that late stage to be told by several people that it is the worst possible thing to do is just awful.
You believe you are sharing your experiences but it actually comes across that you are telling people what they should and shouldn't do. I am saying this as someone who is reading your posts and it is something that you as the writer cannot see.
There is so much anger on the site and anti everything it detracts from the purpose of the forum. I don't find the site in general to be very user friendly, I try to bring some positive experiences to discussions, but on the whole I am shot down in flames, so why do I bother, I probably won't anymore as this is never going to change until we are all given equal respect in our opinions including doctors, training or otherwise.
Which is why, of course, some of us are here in the first place, because we don't feel that we are being effectively looked after, for whatever reason.
Yes, in fact, I have. And I continue to struggle with it every day. It's my reality and I've accepted it. Yes, I've been bounced around trying to find a doctor that's not afraid of insurance companies or other agencies questioning his practices. And yes, it can be draining beyond belief. Its why I left what would have been an unbelievably lucrative career in finance to study medicine. And it's what gets me out of bed in the morning.
Do you resent it because you picked up on my sarcasm or because it merely alerted you to the fact that you shouldn't be handing out medical advice to people who may end up fixating on what you said and not do what needs to get done? Yes, you should try to improve your quality of life in anyway you can, I never claimed you shouldn't. I'm not a villain.
I also never said that you personally think you should be flying high on narcotics, simply that there is a reporting bias in surveys and also a bias in charities who conduct those surveys. If they don't stir the pot, they don't get donations. And, to be clear, I would love it if you felt better than OK. I'd want you telling people you feel like a teenager again (minus what ever bumps and bruises age has thrown our way obviously).
If your doctor is not directly telling you important facts about your health, you should see a new doctor. Or, if that doctor otherwise has his head on correctly, you should stick with him and just remind people to ask certain things about their diagnoses. The fact of the matter is that most patients want to get their pills and walk away. And to avoid the confusion from before happening twice, I'm not saying that you are one of those patients.
I'm glad you're getting the help you need from your cardiologist. I never claimed you were stupid. In fact, your desire to learn as much as possible about your condition offers evidence to the contrary.
Now, all that being said, I would again like to take a moment to remind anyone reading these posts that the original topic on the table was essentially pointing out who is on your side and who is not.
<sigh> Yes, I resented what you said about dishing out medical advice as you posted it in reply to what I had said.
You said, quote "Or maybe your expert opinion is incorrect, and their other health problems are just that--other health problems. In which case you don't do them any justice trying to convince them it could thyroid related because in essence all you're doing is keeping them from receiving the care they need." unquote.
MDinTraining, thank you for trying to bring some balance into this discussion.
Everything that you have written in this post makes a lot of sense to me.
Unfortunately, as you have seen, balance is not something that seems to be appreciated by some people who are not so open-minded.
There are times when some people treat this forum as a victims support group, which means that prejudice, antagonism and even political views get in the way of balanced advice.
With all of the negativity that you have received, I would not blame you for leaving and joining a more open-minded forum, but I hope that you will stay.
Thank you for your support. Going against the grain in acknowledging that my posts have some validity was truly a classy thing to have done here.
One of the worst things we can do as a community is commiserate over things we have no control over. Worse than that is taking that negativity and directing it at the only people in healthcare who are truly on our sides, the physicians and researchers. I'm blessed to have seen a little deeper into how much heart and soul these people put into helping their patients and furthering their research for the sake of people who might benefit from their work. You'd be surprised how many physicians stateside use their vacation days to volunteer at community clinics and give talks to young students at all levels of education. Perhaps its hard to accept that people could give so much of themselves and not be looking for something in return? Then again, if you were in a position to do it too, wouldn't you or anyone for that matter? If people would ask themselves "If I were in that position, would I do that horrible thing I'm accusing an entire population of professionals of doing?" they might find a deeper understanding of the problems at hand. Even if, using the original scenario, someone were offered some money to falsify research, they would be putting their entire career in jeopardy, lose the respect of their colleagues, lose their job, and harm a bunch of people in the process. Pretty much no one would do that.
As for the negativity, I'm an American. I'm used to it. I'll be sticking around so long as the board admins will have me, and hopefully help a few people along the way. Thanks again, I truly appreciate your post.
I have this vague recollection of "private" in the US meaning the exact opposite of "private" in the UK for some reason? Is that right? And I'm studying in the US at what we refer to as a "private" school. I think I may have just confused myself
The confusion arises with our "public" schools which are fee-paying schools. Whereas I believe in the USA the term applies to publicly funded schools (which we sometimes call state schools).
Any thoughts on the specific challenges we face with the nhs, like the disincentives for prescribing thyroid hormone and preference for antidepressants, the artificial inflation of the price of liothyronine, or the regular refusal to do routine testing, and what this might mean for the doctor-patient relationship?
When many of the members joined, this was, indeed, called 'Thyroid UK Support'. A subtle change seems to have occurred since the new platform was launched.
I like that you can have a good old moan on here with like-minded people, that's where the "support" can make you realise that you are not alone, and is very important to me. There is only so much moaning my family want to put up with, and the cats are bored with it now.
I also like that people are willing to give advice on more medical issues - people can choose to accept that advice and investigate further, or not. That is their choice.
That's what I like about this site, so thankyou to all who make that possible.
When I joined this Forum, it was called 'Thyroid UK Support'. Health Unlocked rolled out a new platform in 2013, and now it seems to be simply called 'Thyroid UK'. On the actual Thyroid UK site, the link to this is still called Thyroid UK Support.
To me, that suggests a support site for members to express their feelings, either about their illness or the treatment thereof. It is true that members also will offer help to others if they have followed a treatment course which has helped them to be well, by outlining their own experiences.
It also tends to be an information exchange - particularly that tends to be the case when individuals are not sure what rights they have - access to their own medical records, for example, or if they need help in understanding the results of blood tests.
There is a wealth of information on the main TUK site, but here people really look for support, often emotional support when they are feeling particularly ill or feel that they are not being listened to.
I personally was told for many years that my symptoms were nothing to do with my thyroid - I was depressive, I had Familial hypercholesterolaemia, I was asthmatic, I should eat less and exercise more. Strangely all the problems have resolved themselves since I started taking Liothyronine instead of Levothyroxine.
I would never have had the courage to look further but for this support forum. In fact, I would likely have been dead, either from a massive stroke or a heart attack. I had already had countless TIAs - the first within 8 weeks of my dose reduction.
I'm not sure if this is the kind of information you were looking for.
The change was actually instigated by Thyroid UK (the charity) as SO many people do not realise that Thyroid UK (the forum) is a very small part of our work.
We hoped that by making the names the same, this may help to make people realise that Thyroid UK (the forum) is a part of Thyroid UK (the charity)...
Not sure if this is helping at all! LOL!
If the link on the main website still says 'support' - I need to get it changed.....
I think it was rather that MD in Training was ignorant of a lot of the facts (e.g high cholesterol and low thyroid go hand in hand, studies show patients are happy with levo thyroxine etc). I'm all for debate, but not for being patronised. I think Dr Midgeley has not set him straight, doctor to doctor.
I am all for debate, but debate means discussing all points of view.
"studies show patients are happy with levo thyroxine" is precisely the head-in-the-sand attitude of many GPs and Endos that who have abandoned a significant number of hypothyroid patients to a miserable life.
Yes, many patients are happy with levothyroxine, but for those who have a T4 to T3 conversion problem, levothyroxine will never result in a "happy" outcome, because they need T3.
You misunderstand me, I know that, MD in Training was quoting studies that say patients are happy with levo, and I disagreed with him.
Dr Midgeley's post in this thread says it far more eloquently than I did but the studies that say levo is fine are badly designed and dont' really take into account patient experiences.
We are not victims and I found your post a little offensive TBH, I am on my fourth endo - the NHS nearly killed me, I'm not kidding, that this line that MD in Training is spinning is precisely the reason I was as ill as I was for as long as I was. Plus this offensive notion that patients like moaning because they want to feel 'high'.
I'm for debate too, but from doctors who actually know what they are talking about before they wade in and tell desperate patients they are wrong. That's what I meant, I find MD in training highly patronising.
And I had Graves, Hashtoxicosis, Hashimotos disease, thyroid cancer and TED. I had a TT and I refused RAI. I started on levo, then levo and T3, now NDT, and I've been to hell and back and I'm now what you'd call an 'expert patient' as it was that or die. I was misdiagnosed by countless doctors for ten years. I did extremely badly post TT and I was repeatedly told 'it can't be your thyroid, it must be something else, your blood results are fine'
That's what the majority of patients on this forum experience, which is why they are here. So forgive us if we get a little uppity with yet another (ill informed) doctor telling us how it is.
I now have an endo who supports and agrees with all I have learned (at a major London teaching hospital) but I had to fight tooth and nail to get there, and I still buy a lot of my own private tests, and I buy all my own drugs, as she can't even get the right tests approved NHS. She admits its 'insane' but her hands are tied. She now writes reports supporting all I have done.
When I meet a 'doctor' who can HEAR us / me say stuff like that, I'll be a bit more 'open minded'. Until then I'll continue to argue my corner.
One of the reasons why I do not visit this site much any more is the significant levels of negativity that seems to be prevalent against doctors, pharmaceutical companies, government, etc.
All this negativity (supported by the Admins, which I find very disappointing) does absolutely nothing to provide support for patients who come to this forum for help and advice.
Having a rant is one thing, but the level of anti-establishment posts and arrogance about what is right and what is wrong for patients are distractions from the significant help that is provided by many contributors to this site.
MD in Training is a doctor who is interested in joining the discussion and he has been slammed for daring to offer his opinion because it did not match the opinion of some of the regular contributors.
Instead of showing this doctor the negativity that is so prevalent on this site, why not welcome him into the discussion by trying to help broaden his outlook with the benefits of other people's experience - in a constructive and positive manner.
I hear you, but the reason there is so much negativity is because thyroid care in this country is a joke, and the pity of the developed world. There are good doctors but they are rarer than hen's teeth. Believe, I've looked.
The good docs are under pressure and forced to toe the line. I'm all for a respectful discussion but if you scroll up this thread, I am not the only person offended by MD in Training's tone. The mark of a good doctor is humility I have found (it's the mark of a good anything actually) and if you read his posts they are very patronising - teaching very experienced patients to suck eggs, with dubious information to boot.
There is a wealth of information out there that explains why the BTA, the RCP, the GMC stance is incorrect from the standpoint of BAD SCIENCE. I'm not a moaning minny, I am not an extremist, I am a survivor of this horrendous system.
It's not clear from your screen name whether you are male or female, but institutional sexism in medicine is rife, and no where more so than in thyroid treatment, so I get doubly uppity at a MALE doctor telling me like it is. You would not believe the patronising things I've been told about my health and the ways I've been spoken to. If the comments doctors made were racist we'd be up in arms, but the way they speak to women is truly shocking. MD in training calling me 'Miss' a mere taste ...
I talk to a lot of people in the States in thyroid circles too - it's not much better over there. I have met some amazing doctors, but the most common trait they all share is they use those highly sensitive medical instruments called their eyes and ears. My endo professors tells his minions, who sit in on consultations, 'See if you listen to the patient long enough they will tell you the answer'. This doctor has been hounded out of his job.
If you re-read this thread from start to finish you can see where our ire is coming from.
I had a stand up argument for over an hour with my last endo surgeon, a very good doctor, not perfect but good, and at the end we shook hands and he praised my knowledge. He finally confessed what I'd pushed him to admit - NDT was the elephant in the room and he was scared of the GMC. He's since quit the NHS as the system is so insane and he 'refuses to practice medicine under these conditions'.
Good doctors these days need to earn my respect and trust - and whilst MD in training is entitled to his views, think of it as we are doing him a good turn, if he learns this now, imagine what an amazing doctor he could be. But right now, he doesn't know enough ... so some humility about that would win him some more positive comments.
Someone once said to me 'but doctors are really clever and have to work really hard at university' and I said, 'So am I'. It takes a bit more than the the letters 'MD' to earn my trust and respect. And it needs to be a two way street.
Your personal situation and experience are not necessarily a reflection of what happens to everyone else, but you seem to be saying that your way and your opinions are the only valid ones.
I agree that the treatment of thyroid disease (and there is a similar situation with parathyroid disease) could be better, but you should not assume that your personal experience means that no one is receiving satisfactory care.
The people who join this forum are usually the ones for whom the normal approach to treatment has not worked. That does not mean that this forum represents the majority of thyroid patients, so I think that some perspective is needed.
My wife takes Levothyroxine and is very well on it, whereas I need T3, because I do not convert T4 to T3 very well.
If we follow the logic of some members who arrogantly insist that they know everything because of their personal experience, then it means that either my wife or I are not as well as we think we are.
This thread has taken many turns , I would like to welcome MDinTraining aka James. I would like to say,don't tar or paint anyone,medical or not. We all here have valid opinions and the right to express them. It'd good to have a heated discussion. I welcome many more.xx
I doubt any Doctor, or student, from the UK would post openly on this or any similar site.
Whatever James' background,experience or attitude to Thyroid issues- I'm sure that his input is appreciated due to a shortage of feedback from the medical profession in general.
As I implied, in an earlier post to James, it wouldn't be tolerated for 'our own' medics in the UK, sad to say.
Interesting you should say this. There is a poster here who uses a version of his real name who I believe to be an nhs endo and there's at least one medical student who used to be very active on the GF Guerillas forum so I don't know that it's that uncommon - ? Particularly when there are so many people who are patients as well as practitioners.
This obviously doesn't apply to those with an open mind and an interest in sharing other experiences and I appreciate it's an extremely grumpy pov (mea culpa), but I get a little eye-rolley about people who come to this forum dispensing wisdom with little to no knowledge of the culture of the nhs.
It's easy to see how patients find it even harder to get through 'the system'.
I think the NHS is purposely blind on Thryroid matters [esp.UAT] as the correct this approach would cost a lot of both money and resources at a difficult time and would entail admitting something of a creeping coverup over the years since Thyroxine [& it's US progenitor] came on the scene to miracle cure all and sundry.
Seeing many posts and discussions on here shows a huge problem which can't be brushed away as mental illness,imagination etc for much longer.[I sincerely hope]
Treating the ongoing ill health is the model we have but people are no longer prepared to passively trust the 'experts' any more.
What I don't understand though is that treatment in most cases, is fairly cheap with thyroxine. T3 could be much more cheaply bought than it currently it, and even NDT could be cheaper if proper cost negotiations were put in place. Whereas they are prepared to send people to numerous different consultants, give them various other more costly drugs to cover up the symptoms and generally place more of a burden on the system than if they just treated people. It's madness
One hospital is going to get a private company in...
My GP will not pay for penicillin injections.
A few years ago the NHS wasted
millions on a new computer system that didn't work.
My GP said on their notice board 168 patients didn't turn up for appointments last month.
Perhaps they should start charging for missed appointments?
So what are these doctors and nurses doing with the time?
Not studying up on said patients
conditions. An extra cup of tea perhaps?
Processing us perhaps.
Revolving door perhaps.
You go to a specialist he knowns
not much more than a GP.
Nurses should be doing routine prescribing. Doctors only looking at difficult cases and doing the leg work. I doubt if a doctor gets
to read up on difficult cases. He just does not see that's his roll.
I think over qualified and over paid.
Out of Hours could be run by nurses. As they are not really there to make decisions.
Likewise A and E the same.
They don't listen I have to do all the leg work myself and go private and still do the job myself.
And get treated like an idiot.
I ve paid a lot of money out to tell the doc his job...
The NHS May or more likely not like it that you've read the Internet
Their favourite pass time is send you to a psychiatrist.
The psychiatrist has not a clue.
He try's it on and says your pain will go if you take this pill.
Sorry I still have the pain.
Only I now have another problem
I am addicted.
Your very ill over the weekend or out of hours. You might get " see your GP in the Morning" Or bounced to A and E.
With all this information out there have they got an excuse?
"Jobs for the boys".
One A and E doctor said to me u need acupuncture physio or a pain clinic. I said what in terms of acupuncture do you think I have got wrong. Your Kidney's. But you can go home.
The physio said I was not an appropriate patient.
The NHS don't use acupuncture to treat illness. Just a bit of backache. Or they give me excersize? Bearing in mind I had an infection that the NHS was not going to prescribe me antibiotics.
If you have Lyme disease they tend to treat it like a common cold. Not that Lyme needs long term antibiotics. So they leave you with the Lyme and tell you you might get MRSA.
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