Levothyroxine T4 is 'ENTIRELY NATURAL!!' Beware Long Rant Alert

I had to see another GP at the surgery today as my usual one is off on his yacht or something. It wasn't thyroid related - I fell halfway down the stairs on Friday, hurt my back and shoulder and had to cancel a 3 day art break I was going on, the first in over a year. I had to see somebody ASAP to get a form filled out for the travel insurance. So up to the surgery I shuffled, feeling even closer to 100 than usual.

I thought my usual GP was bad enough, but this guy was so patronising and arrogant and completely horrible that I could have hit him if I could have moved fast enough. He naturally didn't soil his lily white hands by examining me, so I could have a cracked vertebra or broken shoulder for all he cared (I don't think I do, but still). He just asked me how many steps I'd fallen down, and prescribed anti-inflammitories.

No, he was MUCH more interested in my thyroid - but not in a good way. 'What are we doing about your thyroid?' he said, not taking his eyes from the computer screen. Resisting the temptation to say 'Absolute Sweet Fanny Adams', I briefly went through what had happened and said I had eventually gone to a private endo, (And who is THAT?' he wanted to know), who had suggested T3.

He said, 'I find it VERY difficult to believe that Thyroxine could cause any adverse reaction, as it is absolutely bio-identical to the substance your own body produces. It's ENTIRELY NATURAL'. Liar, liar, pants on fire. He went on to sing the praise of Levo, as they all do, blah blah blah, it works for EVERYBODY, blah blah blah...ENTIRELY NATURAL...I tuned a lot of it out as I feared for my blood pressure. There was no way I could have made him listen to anything, so I didn't waste my energy trying. How can they sit there and tell us downright lies? And in such a sneering, patronising way? That's almost the worst part of it. It's like they are deliberately trying to make you feel small and stupid and defeated - like they get some kind of sadistic pleasure out of it. He didn't actually call me a liar, but he might as well have.

They don't seem to realise the days are gone when we would obediently take whatever pills and lies they choose to dish out, when we know only too well that they ARE lying, and if the pills make you feel worse you can now do your own research into any alternatives.

I could feel my hackles rising more and more, (at the same time as my heart was sinking), but tried to stay calm and said I wasn't there to have an argument with him. I said my endo had tried a couple of NDTs and we were now trying T3. I swear he actually curled his lip at the mention of NDTs, and said 'NDTs?' in that sarcastic way they do, as if they've never heard of them. Or I, the patient am not supposed to know about them. That makes me SO mad I could spit.

I practically ground out 'Natural Dessicated Thyroid' between clenched teeth, and after a grunt of disgust he went off on one about how HE didn't know ANYBODY who was doing well on NDT, and perhaps it was time I went back on Thyroxine. I told him I had already tried four times and wasn't going through this hell just for the fun of it, and he just said perhaps it's time for you to try again. In his dreams. Patronising G*T!!!

I said I belonged to a support group with over 6000 members, and they couldn't all be deluded or lying - boy did that light the blue touch paper! He really took his shawl off and got out of his pram, started getting really angry, talking over me, saying, if you LISTENED (yeah he would know all about listening), what I said was 'hardly' anybody does well on NDT (oh, I thought you'd never heard of it??).

Have you noticed that normally they're only too eager to unload you and for you to join a 'support group' - if you were say anorexic or had alcohol problems. Yet at the mere mention of a support group for thyroid, they go completely off their heads! Maybe because they can't control groups like TUK, or because they don't get any extra funding for referring patients to a thyroid support group - because there aren't any on the NHS. You would think any decent GP who cared about his patients would be only too pleased there is a resource we can turn to when they don't know what the hell to do. Some hopes. First find your caring GP.

Anyway, I could feel myself getting to the point where I was either going to start crying or lose it and scream abuse at him, so took my prescription and left. He told me to get a thryoid test and 'just leave the insurance form in reception'. Like hell I will. I stayed for the test, (which I was going to do this week anyway), but no way would I trust him to fill in the form without dragging up some misdiagnosis from my records as a 'pre-existing condition' just out of spite.

Why do they have to be like this? He really seemed as though he actually HATED me once we got on to the thryoid issue. It wasn't even why I went to the surgery, I prefer to have my thyroid looked after by Dr B and discuss it as little as possible with the GPs, as so far the ones I've met are obviously so violently opposed to everything but Levo.

It upsets me so much to be talked to, or rather shouted at, as though I was some kind of batty ignorant moron. I thought my regular GP was bad enough, but this guy makes him seem like a pussycat. Thank God I didn't get him as my GP when I joined the surgery, I hate to think how much worse it would have been.

So much for 'seeing another GP at the same surgery'.

The thing that gets me is that hours later I still feel really upset, wound up and tearful, and so impotent and frustrated. I know for my own sake I should just let it go, and I am trying, but it frightens me and makes me so angry that they are allowed to behave like this. What happens when you need them for something other than thyroid when you have such a poor relationship? I have issues I really need to see my GP about, but hate going to the surgery so much that I keep putting it off because I feel he won't listen to me. So it - the thyroid war - has a knock-on effect.

When you hear in the media that it's embarrassment on the part of the patient that stops them going to the GP for things like the symptoms of bowel cancer (for example) - ie it's all our own fault that we don't get diagnosed sooner - NO! It's because some of us have had so many battles about our thyroid, (or whatever), have been humiliated and made to feel like total idiots, that we don't go because we feel we won't be listened to, and can't face any more confrontation.

Yes I know you've heard it all before, and there are some good GPs out there, and I know there are many others on here who are suffering a worse fate at the hands of their useless opinionated lying GPs. So, sorry for the rant, I just had to get it off my chest. (Or what would be my chest if I had one :-) )

My heart goes out as always to all of you who can't even get diagnosed, let alone treated. What a battle it all is.

Kanga xx

94 Replies

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  • hi kanga thats the first book ive ever read lol i still say its all about money money money gps think they paying for meds good luck paul

  • Glad to have begun your literary career :-) I think there's a lot of truth in what you say, a lot of it is about the wonga - but I don't see why they have to take it out on the patients - we don't decide on the price of drugs, and I must have saved them a small fortune already by going private for the endo and paying for a lot of blood tests that my regular GP refused at first. Having the bedside manner of a warthog with haemmorhoids doesn't seem very constructive.

    Thank you for your interest,

    Kanga xx

  • u welcome and ur follow up book was much lighter lol it is about wonga my gp always going on about how much it costs to give us meds on prescription.and goverment dont want to many people diagnosed and put on meds for life . and if thyroid could be covered up and diagnose nobody gps would be much happier just my thoughts maybe wrong

  • Paul - (Volume 2 :-) ) well, I don't know. I used to have a GP who went on and on about how if everybody with migraine was on Sumatriptan, the NHS would be broke. I used to get 6 tablets about every 3 or 4 months, if that. So blame me for bankrupting the NHS, I should have just put up with 3 or 4 day migraines.

    For several years I have been prescribed the cheaper generic version, which is like a huge horse tablet and I have to cut them up. The last twice I noticed that the GP had prescribed 50mg tablets instead of 100mgs, but still only 6. I want to say to him, you're not saving any money, it just means I have to swallow twice as much when I'm feeling sick as a dog with migraine.

    I thought Levo was supposed to be cheap as chips, which is why they prescribe it. Except when they don't, and people are taking 5 or 6 other unnecessary meds for the symptoms they get from untreated thyroid.

    The lunatics are running the asylum!!

    Kanga x

  • I'm sorry Kanga, what right had he to go on about something unrelated? Usually if you go they will only consider one symptom at a time.

    You could of course write a letter of complaint to the practice manager, stating that this GP made you extremely upset and as you have said "What happens when you need them for something other than thyroid when you have such a poor relationship?"

    I'm not one for complaining either (too much of a wimp and I confess I haven't been back to the GP since I keep being told results are 'normal' even for other issues!) but this condescending treatment of Thyroid patients MUST STOP! and writing the letter will help you (even if you don't post it).

    ((hugs)) Jane :D

  • Oh and perhaps if this happens to anyone else, we should calmly say you are making me upset and ask for an immediate blood pressure test! Jx

  • I might just try that, but then there's the chance of 'depression' rearing it's ugly head. Don't want to give them any excuses. It's like walking on eggshells, isn't it?

    K x

  • I had an incident with a condescending GP (who hasn't?!!!) and left it until I was no longer angry about it, but then did write a complaint. A letter that is not a rant, but is consise, clear and well thought out cannot give them excuses to tag you 'depressed' or whatever...

    In my letter I also included a paragraph about the good support and advice I had recently received from another GP at the centre about another issue (plantar fasciatis). I didn't want the letter to be just complaining and I wanted to encourage them to use more positive, respectful behaviour.

    I received a reply from the manager who said the issues I raised would be discussed at their next meeting. I'm sure this is a fairly standard reply, however, I'm also sure that writing a letter when you're no longer really upset does make a difference.

    I also think the point you make about needing to build a relationship of trust is really good, and I'd probably have included that if I'd thought about it at the time. Very true.

    Good luck... :)

  • Thanks Liza, that sounds like a possibiity. I always try to make the point when I'm talking to them or trying to - that there needs to be mutual trust between the GP and the patient, but it goes down like a lead balloon. They just don't seem to 'get' it, don't seem to think you have the brains to voice a concept like that.

    Their view is more like you have to do what we tell you whether you like it or not. No mention of trust - we don't actually give a rats about a moron, an obviously Lower Being like you. The very idea of them trusting or believing the patient about anything is so far off their radar it doesn't even exist. So I get a blank look and end up feeling a bit of a prat.

    I wouldn't write while I was upset or fuming, but by the time I calm down, I just can't be bothered to waste any more time on it!

    I did write a carefully worded response to the 'report' sent in by the psych 'team', which was absolutely full of things that were totally untrue and made me sound like an uneducated drug taking moron. Apart from that, it had medical discrepancies such as saying I had stopped my levo on the advice of my endocrinologist, whom I hadn't even heard of at that stage, let alone seen. Loads of other stuff that I can't remember now.

    I had taken a voice recorder with me and just plonked it on the table, so they knew they were being recorded. Nevertheless, although it was all very polite (if ridiculous) on the surface, they still sent in a report that was almost complete fiction. So in that case, I just had to refute it, and asked for it to be put on my notes.

    I don't know if it made any difference to anything, but at least there was no more talk of major anti-depressants - they had decided I needed to be 'put' on 50 mg of Sertraline daily - NO WAY, Pedro, Apart from anything else, it had a list of side effects as long as your arm, some irreversable, the worst of which was nausea and vomiting. Hello, this was my biggest problem anyway. Thankfully they seem to have gone off this idea, for what reason I don't know. I wouldn't have taken it anyway.

    I totally agree with you about also putting something positive in a letter. Some carrot along with the stick. Unfortunately I can't think of anything much positive so far, except maybe that my own GP hasn't actually shouted at me. Yet. Oh, and there was a nice plant in reception :-) The basic answers are the same regarding the NDTs and levo, it's just that this other one was really unacceptably verbally aggressive and horrible, and I hadn't even gone to consult him about my thyroid.

    If only establishing a good relationship with your GP wasn't such an uphill struggle. It seems as though it shouldn't be such a monumental effort. It feels as though they have to keep it that way in order to preserve their God status. So much for the patients.

    Anyway, good for you in writing the letter. I hope it gets some results. Good luck to you too.

    Kanga xx

  • Hi Kanga

    After writing this morning, I had to call my surgery to see if they did a nurse run heart health type clinic as I had some concerns and I wanted a few heart issues checking. When I explained the issues I was immediately booked to see the GP this afternoon.

    I don't know if I've now been given a red flag since my letter - but the GP asked lots of questions, listened to my symptoms and has referred me on for a barrage of tests. I had nothing but respect and this is how things should be.

    Your experience sounds shocking. Have you thought about sacking your medical centre and trying somewhere else if you can? I've had some ups and downs with my centre, but the downs have been relatively minor in comparison, and I really believe that my complaints have been listened to.

    We should all have the opportunity to build trust with our medical providers. As you know, thyroid stuff and all the extras which come with it, are for life. How can we build that trust if, as you say, that is an uphill battle. Is there somewhere less uphill you can go to?

    Best wishes

    Liza

    xx

  • Liza, I wish I thought there was. The trouble is, it's

    practically impossible to 'test drive' a surgery

    before you sign up with them, or even get to quiz a particular doctor about their views on X Y Z and I'm afraid of getting lumbered with somebody worse.

    As I say, I thought my regular GP was useless, but after seeing the other guy I thought phew, what would it have been like if I'd got him as my default GP. I did get on OK with my regular GP until the thyroid issue became an issue, and although I'm not defending him for what he has - or rather hasn't - done, at least he has co-operated with the endo and hasn't YET been aggressive or patronisingly suggested it's 'time I went back on Thyroxine'. YET :-)

    Since I wrote my response to the psych report, and also tackled him about lying to me to get me there and not discussing it with me first, he has more or less stepped back and let the endo suggest the treatment, and while I wish he would take a bit more interest, or better yet show some signs of wanting to learn a bit more (some hopes), on balance I would rather not have him agressively in my face like the other one.

    I made sure I put in my letter that 'if he remembered', the condition he put on me seeing the endo was that he would refer me if I went to see somebody at the CFS Clinic, (which turned out to be a psych panel). So that's there in black and white, if he put it in my notes as I requested, and I don't know if his making a 'bargain' like that is ethical, especially as he wasn't even telling the truth. And I was paying to see the endo as well, saving him the trouble - I shouldn't have had to agree to any bargain, but I thought I would be getting to see somebody about the CFS - first time in 40 years.

    I was excrutiatingly polite, throwing in a few 'I respectfully requests' and 'I'm sure you'll understand whys' - a bit sickening but as you say, never does any harm to butter them up a bit while you're slapping them in the ear with the other hand :-D He tried to pass off the CFS thing as a 'misunderstanding', but I know it wasn't, and he knows I know, etc etc. So a least at the moment he's more or less civil to me even if he wants to strangle me on the quiet.

    For me I think it's a case of 'better the devil you know' - I have other issues besides the HypoT, and some things that I've put off asking about because I feel he won't listen, and that annoys me, but I'm not actually scared of him like I would be with the other guy.

    So I think I might try working on my relationship with him and see if we can establish a better rapport - in a way being walked over by the other guy has been a bit of a wake up call, although it's pretty lousy to have to think like that.

    Maybe I'm living in a dream world to think that we could have a better relationship, but I've managed it before with a previous horror GP, mainly by writing everything down before going to the surgery and just handing it to him! A bit unorthodox maybe, but he seemed to have a bit more respect for me once he realised I could actually string two words together. Or maybe it just saved him having to talk to me more than the absoute minimum!

    Your letter certainly seems to have got results, so good for you. Maybe they worry about complaints a bit more than we tend to think. Or at least some do. Hopefully there is some power in the written word after all. It will be interesting to hear if they manage to keep up the good behaviour! I hope so.

    Kanga xx

  • mmm I think you're right. Better to stay and try to build a more positive relationship. I also think you're right in that showing them we have some intelligence makes them up their levels a bit. The written word has made a difference so far... they had best keep up the good behaviour - I work with teenagers and I'm ready to take behaviour management to the next level if required... ;)

  • Liza, it's pretty absurd when you have to think in terms of 'taking behaviour management to the next level', isn't it? :-)

    You're definitely braver than I am! (In fact you sound a wee bit like Miss Whiplash...ahem... we don't want them enjoying you getting strict...) :-D

    Maybe thinking of them as stroppy teenagers would be a good image to keep in your mind when in the surgery - their behaviour often isn't much better.

    Remember Kevin the Teenager (Harry Enfield I think), where he woud say 'I HATE you' at every opportunity? Sometimes you can see that in their eyes although they can't actually say it in so many words.

    On the other hand, it's scary to know that our health is in the hands of a bunch of spoiled brats who apparently never had anybody contradict or stand up to them before, judging by their arrogance. Nobody ever taught them good manners, that's for sure. Now where's that whip....?

  • Hehehe! But when I have issues with adults who won't listen to me, I DO now use techniques I use at school.

    Some years ago, I was involved with a man whose behaviour was bordering on abusive. I said to myself, would I put up with this from a child? If not, why is it ok for an adult to treat me/talk to me like this? Of course, it's not, but I realised I was allowing adults to walk all over me. Sadly, as you know, not all adults are fair, considerate, well adjusted with a highly developed social conscience and level of empathy. Medical professionals have their own set of issues.

    Anyway, after that time, I won't allow adults to get away with behaviour that I wouldn't accept from a child. This includes healthcare professionals.

    Sadly, I had to ban the whip some years ago, but strangely, my Easter Bunny name was 'Spanky Raindrop' so maybe the universe is trying to tell me something! ;)

  • Well, SPANKY, you've done it now! That is SOOO funny, I actually laughed out loud for ages, which doesn't happen often these days. Absolutely brilliant, and kinda catchy don't you think?

    Shame about the whip, but I would love to hear some of the techniques you use. My husband teaches stroppy teenagers but he doesn't tell me any of his secrets (if he has any).

    He doesn't seem to have much of a problem with bad behaviour - I hate to say it's maybe because he's male and 6ft 2", or more likely because he worked for years with older kids who were terribly damaged from being abused all their lives, and once you've had to deal with chairs flying past your ears on a regular basis, kids self harming, breaking windows, fighting, absconding and worse, I suppose life in a regular FE College holds no fears for him. Luckily he's not like me, falling apart at the least little thing.

    I just think doctors are in a unique situation, privileged even, although they see us at our worst which can't always be fun. But they also see us at our most vulnerable and you would think they might just see that as a golden opportunty to do their best for us, or at least work with us - I mean, who but somebody with a twisted sadistic mind would rather be seen as the devil incarnate when they could be a knight in shining armour?

    OK, they can't hope to 'cure' everybody, after all they're only a filtering system and can't work miracles in 10 minutes - but there's still no excuse for being aggressive and condescending and sending you away feeling 100 times worse than when you went in. Maybe they are the ones who need to see a psychiatrist for anger issues, control freakery, sadistic tendencies etc. Oh and congenital deafness :-D

    If the whip is out, maybe a vision of him in a nappy and me telling him he's been a Very Naughy Boy might help...although it's pretty horrible to contemplate. Not that I know anything about that kind of thing of course... I quite fancy changing my name to Spanky! Now I'm off laughing again, thank you so much for that.

    Kanga xx

  • You've really made me laugh too - esp the last paragraph... I'm really trying hard NOT to visualise the scene!!! I kinda liked 'Spanky' too - it's just such a funny sounding word, never mind any lateral thinking! :D

  • I'm sure if they knew how we talk about them behind their backs they would be horrified - at least as horrified as we are at the thought of them in nappies! :-D

    I don't suppose they really care what we think or say outside the surgery. Which is a shame really, I'd love them to feel small and stupid for a change instead of just dishing it out.

    I'm just going through the thread again and getting some ideas together for tomorrow, and reading about 'Spanky' is making me laugh again. Now...got to pull myself together and get serious. Very funny though, thanks again.

    Kanga xx

  • Good luck for tomorrow Kanga. I hope it's not too stressful and you feel that you get some support.

    I chart my symptoms and take the list with me when I visit the GP. I've photo'd some examples and described how I use it here;

    thyroiduk.healthunlocked.co...

    Take care

    x

  • Hi Kanga so sorry you had such a horrible experience. I too have received this sort of "care" and have found it necessary to complain. However, I think you are right in that it is often better the devil you know etc.

    My personal solution would be to carefully play one GP against the other with a situation like this and more often than not it works.

    Experience has shown me to be 'very nice' when I write these letters so that nothing detrimental can be said about me. If I was you I would write to your original GP and tell him what a horrible experience you had with the other GP. Make sure you say that you went home sobbing. (This may seem weak, but believe me it pays in a situation like this to admit just how upset you felt and you have to appear vulnerable to make your own GP want to feel that he must help you. Emotion in the right place is important.) Tell your GP that the other guy was nowhere near as helpful and understanding and willing to listen to you regardless of the fact that it was he who raised the question about your thyroid when you hadn't even come in about this. Tell your original GP that you really don't want to see the other guy again and would prefer to see him when he returns.

    I can hear you putting your finger in your mouth and being sick at the thought of being so 'very nice', but it will boost his ego, which few can resist and how can he possibly not be absolutely lovely and understanding when you next see him! More importantly your letter will be on file.

    I appreciate that there are times when one needs to be factual, decisive and firm when writing, but sometimes the more personal, emotional approach might be the road to take especially if ego is involved. Bottom line is that you need someone on your side at that surgery if you have nowhere else to go and GP's tend to stick together if a formal complaint is made.

    This is what I would do and I hope its of help to you. Whichever way you go good luck.

    :)

  • zizi, your suggestion (for which I thank you), is EXACTLY what I was planning to do!

    I know just what you mean about emotion in certain situations being the right road to take, and even though it feels a bit sneaky, I am prepared to use my own GPs ego to try and get him on my side by playing the 'vulnerable little woman' card if I have to.

    Desperate times require desperate measures! :-)

    If they won't or can't be honest and decent or even polite with us, we have to play them somehow to try and get a fair deal, and if I have to resort to those kind of games I will. I wish it wasn't necessary, but when fighting isn't an option any more we have to use our brains and anything else at our disposal. I just wish I was younger and prettier. Although come to think about it, it never made any difference when I was.

    I've already had a tiny bit of success with getting the vitamin D - silence and looking at him with brimming Irish Setter eyes - though I have to say my emotions are usually so close to the surface that I don't even have to pretend.

    I honestly don't want to argue with them, I just haven't got anything left any more, and it makes me feel so ill afterwards. I'm very wary of actually crying in the surgery, although sometimes it's been hard not to - in case it gives him an excuse to drag out the depression card, (and sometimes I think it makes a certain type feel even more superior if they actually make you cry, which is awful).

    I'm also not under any illusions that he will change his opinions on what I should be taking for HypoT, (levo), or want to learn any more about the thyroid in general, which is a pity but I can't expect miracles.

    But I was certainly going to put it in writing -without actually making a formal complaint -how awful the attitude of the other doctor made me feel, and how counter-productive I thought it was, which seems reasonable to me.

    I will have to play it softly softly because I don't want to come across as paranoid, somebody who just moans all the time and thinks everybody at the surgery is out to get me or be horrible to me. As you say, they do hang together so I'm not going to go over the top - the other guy might be his best mate for all I know.

    My husband (a psychology lecturer :-D ) suggested I say boy am I glad to see YOU, but I think that's going a bit far - he already knows I'm pretty unimpressed by his lack of care, so he's not going to believe a total change of heart on my part. Just a bit of judicial ego-stroking! :-D

    But, I had already decided to make sure he knows how awful the other guy was and how bad I felt, and hopefully bring out his protective instincts - assuming he has any! I don't think it would have worked with the other guy, he was just too aggressive and opinionated by far. An ill mannered pig at the very least. How dreadful it is that we should have to say that about people who are supposed to help us.

    I had also made up my mind to say I never want to see the other guy again, and that I would much prefer him - my regular GP - to fill out the insurance form. This is true anyway, and I certainly wasn't going to 'just leave it in reception' as the other one suggested. If he's as much of a slasher with his pen as with his tongue, I hate to think what he would have put on the form.

    So many thanks for your advice, which I think is wise - sometimes it just isn't possible to change surgeries or even change GPs within the surgery. I think it really would be the last straw for me if I got somebody worse. And I really don't have the heart or energy to complain officially when I know it would be a waste of time, although I have every respect for those who do take that route. Ten years ago I would have fought my corner to the death, but I just can't do that any more.

    So yes, I shall give my few remaining brain cells a workout and see what I can come up with that might work. :-)

    Kanga xx

  • Hi Kanga I have to say that although you were really upset yesterday, your 'rant', although heartbreaking really, still made me and my husband smile. He particularly liked your husband's suggestion of which we both fell about laughing, but could appreciate that it's probably not quite right for this situation. You have a skill for writing so I'm sure you'll find the right words to say. Do let us know how things pan out.

    :)

  • Thanks zizi, I do try to make my rants a little bit entertaining if I can, rather than just a long tale of woe. It's already a risk of boring people if I just go on and on (as I do) with absolutely no light relief. For some weird reason I can't seem to help putting in funny bits if they come to mind - it makes me feel better somehow if I can poke fun at the bad guys, and it's good to think I can raise a smile in other people who probably could do with a laugh just as much as me.

    Have you noticed though how many fantastic comediennes we've got on this forum! Some of the brilliant replies have had me in stitches - again, very therapeutic and helps to put everything in perspective.

    Yes I think greeting my regular GP with cries of joy would be a bit much - although absurdly I'm tempted, just to see what would happen :-D Although I did say I was going to make it my mission to make him go home to change his underwear... that

    would do it all right! Hmm ...no, I think a letter is the way to go.

    I will let you know what happens.

    Kanga xx

  • Love the "even if you don't post it", comment as I've been wanting to write a letter for the last week after my visit, and know it would get it off my chest but I probably wouldn't post it - even after hubby would have edited it to make it less controversial!

  • Hey Tracey, why not write a book on here, now we've got to supply Paul with some more light reading :-D The more controversial the better!

    Kanga xx

  • Hi Jane

    Thank you for the kind words (and hugs). You're right, if I'd gone up there to talk about more than one thing, normally they don't want to know. But this guy was like a vulture, it was like blow falling down stairs, let's have a fight about thyroid meds.

    I just don't see why they have to be so downright nasty about it. I don't honestly think there's much point in wasting energy in writing to the practice manager, they all hang together and it wouldn't make any difference. It would probably rebound on me and make them worse. It might wimping out, but I just don't have anything left to fight with, it's like repeatedly banging your head against a brick wall and twice as pointless and painful. This guy was like a human (or inhuman) bulldozer, he wasn't going to shut up for anybody.

    It scares me that they are so vindictive and seem to actually revel in upsetting you. The only way I can deal with it is to say as little as possible and let them spout all their cr*p, knowing in my own mind that in this case I do know more than they do. What worries me is, as I say, what happens when you need them for something else?

    I don't suppose my regular GP will even ask how I got on, well I know he won't - but if he did I would say that the other guy really upset me and what right did he have to take that attitude. If my GP suggests it's 'time I went back on Levothyroxine again' I might just have a few choice words ready, but on this occasion I just wasn't expecting anything thyroid related so I was taken by surprise and left floundering.

    It has helped a lot to be able to let off steam on here, even if I did write a book! :-D

    I don't know what I would have done without all you guys, you've taught me all I know! (About thyroid anyway) Thanks to one and all.

    Kanga xx

  • But, you never managed to look at him in shock and tell him that the American thyroid association are having a meeting to discuss treatment of hypothyroidism .... They admit that they may have been over optimistic in believing that t4 can treat people successfully. (It was mentioned on here may be yesterday?)

    That would have been a good one for stopping him in his tracks.

    Xx

  • Hi galathea - well, I probably did look at him in shock, but more because I wasn't prepared for the onslaught than anything else. I just wasn't expecting a thyroid fight when I went for something completely different.

    Believe me, nothing would have stopped him in his tracks except perhaps a bullet. It sometimes surprises me that more GPs don't get physically attacked - just as well we're all too exhausted.

    I didn't see the article about the American Thyroid Association (although would our guys take any notice - I doubt it somehow, they think they're so superior), but if anybody has a link to it I would like to read it. Thanks.

    xx

  • It is under news articles on the throid uk web site. (Link to site at top of page)

    Here is what the site says:

    3/04/2013

    ATA Spring 2013 Symposium

    The American Thyroid Association are holding a Spring Symposium in Washington DC entitled, "Treatment of Hypothyroidism: Possibilities on the Horizon".

    The invitation to this symposium explains that thyroid hormone therapy is still subject to debate amongst doctors and that synthetic levothyroxine providing a complete resolution of symptoms was perhaps an overly optimistic hope.

    It also discusses other reasons why patients are not getting completely well on levothyroxine and that more research needs to be done in various areas of thyroid disease.

    One thing that really excites me is the fact that it mentions that there is a preparation of T3 with a physiologic extended-release profile under development i.e. a slow release option.

    There will be a half day of basic science at the beginning of this symposium, to review key aspects of thyroid homeostasis and action i.e. self regulation.

    Let's hope that the doctors/endocrinologists that attend this meeting will be as open-minded as the authors of this invite.

    To see the invitation go to this shortened link: goo.gl/q12X4

  • Well darn - thanks for the link galathea, but it didn't work for me, I got the 'page unavailable' thing.

    Still we can but hope that the ball might have started rolling in the right direction, however long it might take to get there. Can it really be true that along with the Scottish Parliament somebody else with some clout has begun to listen and take action at last? I do hope so.

    Now if we could only bind and gag all the non- believers and don't-carers in this country - I was going to say shoot, but trying not to let my Surgery Rage take over...

    I thought there was already a slow realease T3? Or am I talking out of the back of my head? Not available over here as far as I know. Interesting though, thanks.

    Kanga xx

  • Don't hold you breath about the slow release t3. I looked at a recent application, which had very little in the way of novelty, - things that could be patents - Nd it was planning to make tablets which were 5 mcg of t3 and 100 mcg of t4. Pretty sure this was the amount... But this is from memory......

  • Hmm...that sounds more like 100mcg of T4 with a tiny bit of T3 thrown in, rather than slow release T3. It's the T4 that would be releasing more slowly surely? So you might as well just take 100mcg of T4 and 5 mcg of T3.

    I thought slow release T3 would be just that - T3 that would work over a period of time so that you wouldn't have to split doses. Oh well...it wouldn't affect me much at the moment anyway, as I'm only taking a tiny bit once a day in an effort to at least not feel worse like I did on a bigger dose. But it would be good for those who have to split their larger dose into 3 or 4 smaller doses through the day.

    I suppose that time will tell if it's going to happen.

    K x

  • Reading all your posts with interest .... there is so much I don't know about a condition I have had for at least 55 years probably longer .

    You could try the following comment if that GP ever starts on you again .. say softly :-)

    '' Does it make you feel more of a man when you shout at and belittle women ''

    I think most of our medical records will say .... depression, malaise etc;

    I was told I have S.A.D .... ok fine .... but then why does it last all year. :-)

    Have a good day

    Lynn

  • Hi Lynn - I love that idea, it made me hoot with laughter at the effect it might have! Ha ha - patient turned psychiatrist. Perhaps I should put my hand gently on his arm and ask him if he has anger issues.

    Might be worth risking him having an apoplectic fit just to have the satisfaction of saying it.

    I had actually made up my mind that I would say something like, why do you have to be like this, why can't we talk about it like civilised adults? - If I get any more nonsense like last time. Trouble is, they're like bulldozers once they start, and you can't get a word in.

    Somehow when you're there, all good intentions seem to fly out of the window and I usually clam right up rather than enter into a screaming match I know I can't handle, then concentrate on holding it together until I can get outside and burst into tears.

    From their point of view, I suppose it's a good tactic to make sure we don't clutter up the surgery too often. I wonder if tey learn that at med school?

    Me too...S.A.D all year...most of us I bet...

    Kanga xx

  • :-) xx

  • Hi Kanga. A big hug from another who has felt the onslaught of a GP who finds themselves out of their depth and fights hard to prove themselves right.

    Jen x

  • Thanks Jen, hugs back to you.

    Kanga xx

  • I agree with Paul, it is money at the root of it all. But it isn't the GPs, it's Big Pharma!

    To be fair to GPs (oh, gosh! when have you ever heard me say that?!? lol) I don't think they are deliberately lying. I think it's just ignorance. They are spouting what they learnt at med school (thanks to Big Pharma) and don't know and don't care that it isn't true. They aren't interested enough to do any research and learn how to handle thyroid properly. That's what I blame them for! Their complacency : if it doesn't work for you, it must be your fault, you must be doing something wrong and I can't be arsed to find out what it is!!!

    But don't beat yourself up. It isn't as easy as just letting it go. And this, I fully believe, is another thyroid symptom : we get upset easily and hang on to it. Not our fault. It's the effect of low thyroid hormone on the brain. I fell downstairs too on Friday. I managed to save myself at the last second. I wasn't hurt much but it really shook me up and I can't let it go. My daughter says well, you weren't hurt, forget about it. But I can't! As soon as I close my eyes I'm back on those stairs falling forward... I'll get over it eventually, as you will this outrange, but in the meantime I'm just telling myself it's all down to my thyroid that I handle it so badly, and then I don't feel so bad.

    Chin up, best foot forward, and any other clichés you'd like to add! We're all rooting for you!

    Hugs, Grey

  • GG I agree mulling and moithering are Thyroid symptoms, as well as being easily upset... (with good reason!)

    I stay awake for hours most nights with the 'monkey chatter' I can worry about absolutely anything depite trying to distract myself... don't think it's just me either...

    J :D

  • spareribs, I'll second that - I've got a degree in Worrying, First Class Hons!! And it isn't just you... :-D

    L x

  • Hi grey - I find it so hard to believe (hey, I sound just like him!) that they honestly don't know that there are alternatives to Levo for treating HypoT, unless they truly have been living under a rock for the past God knows how long. If they really don't know, they should damn well find out, not just get furious with patients and behave like arrogant sadists.

    When they roll their eyes at the mention of NDTs and pretend not to know what they are, (per-lease!), or they haven't heard of ANYBODY doing well on them or T3, you just KNOW that can't be true, so why insult our intelligence by lying about it. Oh I forgot, we haven't got any intelligence to insult, so they can say what they like and be as nasty as they like.

    You're right when you say they aren't interested and don't care, which is very sad and frightening - if our GPs don't care and don't want to help us, what are we to do? Not everybody has the money to go private or the self confidence to go it alone.

    I didn't connect the getting upset and not being able to let it go with the thyroid, but it does make sense. I feel as though I'm barely holding it together, and it doesn't take much to flatten me, never mind a GP on his high horse spouting the usual 'Levo for everybody' tosh. I've got the message by now that they know bugger all and care even less, but I wish they could be more civil about it, not tear into us as if we were complete morons or making ourselves ill for fun.

    I'm so sorry to hear you fell down stairs too! I think it was worse for you as you went forwards, that must have been horrible. I kind of slipped and went down on my back, which was painful but not as bad as going head first. I'm always paranoid about stairs and terrified of smashing a lot of very expensive dental work, so I was holding onto the bannister and almost ripped my arm off as well!. It certainly does shake you up.

    Like you, I usually replay things in my head over and over, even when I know it isn't doing me any good. Thank goodness you weren't badly hurt, but I can imagine how it would prey on your mind. Much worse going head first. I hope it will fade away soon and you'll feel better.

    Well, it's a comfort to know there's something else I can blame my thyroid for! I wonder if it would work in court, the way it has done for PMS? 'I didn't mean to stab my horrible GP Yer Honour, it woz me thyroid wot done it' :-D Anybody heard of Surgery Rage?

    Kanga xx

  • Thank you for the wonderful laugh! Made my day! Surgery Rage. lol Might be the next big thing. And as you said, it wouldn't be surprising if more GPs got attacked with their shitty attitudes.

    A GP once said to me that I should see a psyciatrist. I asked him why he thought that, thinking he would say something like well, you're depressed blah blah blah. But he actually said well, if I were as fat as you, I'd need to see a psychiatrist too!!! The red mist took over. I wanted to kill him! I leapt out of my chair and shot forward, slamming my hands down in the middle of his desk with a loud bang. He shot back in his wheeled chair and hit the wall, with such a satisfyingly terried look on his face. lol And that's how I got a referral to a new endo. (Who was rubbish, but still...) As I left the surgery, I told him he should be aware that seriouly hypo people (my TSH was 9.5) were inclined to be aggressive. Hopefully, he will think twice before insulting a patient in future!

    As to the falling down stairs, I have this strange exterior staircase that is wood until the last three steps which are uneven, well-worn stone. And the problem is that the handrail ends just before the three stone steps start. I had just reached the stone steps when I got my heel somehow caught and couldn't put my foot down on the next step - only a tiny 1 cm heel - which threw me forward. And I had nothing to grab on to. However, it was strange because everything seemed to be in slow motion and my brain took in the situation, saw the paved court-yard below me, and screamed no!!! go backwards! And I managed to throw myself backwards onto the stairs. I twisted my right knee and sprained my right thigh muscle, but I think that had I gone forwards, I would have ended up dead. And that's what scared me. Also, as I was dashing out to pick the grandkids up from school, I didn't have time to nurse my shock, which made it worse. Ho hum! Gonna get those stairs fixed!!!

    Oh, those poor brain-washed doctors... They must be very unhappy people to be that nasty. That's what I tell myself. And I feel sorry for them. lol Now I just avoid them, before I actually kill one! They really do ask for it, don't they!

    Hugs, Grey

  • Grey - yes, I think we might be hearing a lot more about Surgery Rage at this rate. Glad I raised a smile.

    Now after reading what you've said, I don't know whether to laugh or cry. How appalling that the GP said what he did about seeing a psychiatrist - it just absolutely beggars belief that they should think they have the right to say such awful personal things to people who just want to be well, and more to the point, what on earth makes them WANT to say things like that? Are they just so thick skinned they think you have no feelings, or do they just not care?

    Or, as I'm beginning to suspect, do they actually get off on humiliating and hurting people they perceive to be weaker than they are? People who in many cases are depending on them to come up with some kind of sensible answer to their illness and misery, not make thngs worse with insults and cruelty.

    I cheered at the vision of you slamming your hands on the desk and scaring the bejeezers out of him! That's just priceless! Maybe next time I should give in to the red mist and do the same. My problem is that I'm built like a peeled twig, so it might not have the same effect - where are large bad tempered Scotsmen when you need them.

    I used to get personal remarks about being so thin - it's a bit worrying that they don't actually do it so much anymore. I've lost even more weight since the levo debacle a year ago, so I'm starting to worry that the reason they're not saying anything is because they think I'm about to fall off my perch. :-) Didn't stop Mr Charmschool talking to me as if I was a piece of scum today though.

    My GP DID send me to a psychiatrist without even discussing it with me, lied and told me I was going to see somebody at the CFS Clinic. Then it was the Eating Disorder Clinic, or the Food Police as I call them, who took 6 months to come to the conclusion that I didn't have an Eating Disorder, it was 'probably something to do with the CFS...or untreated Hypothyroid...' thanks guys, I could have told you that 6 months ago, and did, but of course I know nothing.

    I'm realising that I got off very lightly with my fall down onto the nice soft carpet at the bottom of the stairs, even with a bruised back and a yanked shoulder! Your fall sounds absolutely horrific. Yes, often it isn't until afterwards that you imagine what 'could have happened' and it hits you.

    I don't think I ever knew what it was like to experience shock until the time I cut my hand quite badly, trying I'm ashamed to say, to open a tin with a knife. Serves me right really. I felt very sick and shaky, and had to lie on the floor with my feet propped up high for a good half hour. I'm told I went a very fetching shade of greenish white. It certainly isn't a time you'd want to be rushing off anywhere, so you did well to go and pick up the grandkids. You're right, you should get the stairs fixed, but you never think until something happens.

    I wish I could feel a single pang of pity for the poor GPs, but strain as I might, I just can't manage it. Maybe it's the sharp suits, the posh cars, the God complex...and they still don't care. It's like patients are just a pure nuisance, getting in the way and spoiling a nice day spent surfing the net (which we're not allowed to do because we're too stupid to tell the difference between the truth and quackery). So be as nasty as possible to us, and we won't bother them again. Simples!

    Hmm, that's a thought . Maybe the answer lies in Pester Power - don't stay away from the surgery, but go there in droves every day and pester the life out of them until they do something. Nah...life's too short as it is :-D

    Well, once again, hope you feel better soon, at least you're still here to tell the tale - just watch those stairs, eh?

    Kanga xx

  • I too got tricked into seeing a psyciatrist by a doctor in the hospital where I had been rushed due to such severe pain in my hip that they thought I'd broken it. I was told he was a 'pain doctor'. And this moron told me, without having ever met me before, or talked to me for more than five minutes, that the reason I was having pain in my hip was because my children had left the nest and I didn't know what to do with my life!!! Never mind the fact that the three of them had left some 5 to 10 years beforehand and since then I had divorced, moved to Paris and started a career in the theatre and the cinema, and had written several plays and books! No. Poor little woman has no purpose in life without her kids. I suppose he meant I was just attention seeking. Boy did he get a piece of my mind! lol But frankly, I would have had to be pretty desperate for attention to have courted the attention I got in that hospital!!! But that's another story...

    I think that one of the answers might be Pester Power. If you can bear it! I tried it for a while but it really wasn't good for my blood pressure, so I stopped. Now I cross myself every time I hear the word 'doctor' on anyone's lips. It sends a shudder through me and shivers up and down my spine. Yes, I think some of them do enjoy belittling us and putting us down. But I think the majority are just too gormless to realise what they're doing. They don't see us as human beings but as a heap of spare parts without any known intelligence. OK, a lot of people are going to object to that statement - especially doctors! - but I believe in speaking as I find. And for the most part, that's what I've found.

    Hugs, Grey xx

  • Grey, once again you've got me with my mouth hanging open in horror. Looney Toons without a doubt. But it is horrifying to think of these crass fools getting postitons in hospitals, with access to vulnerable ill people or those in great pain - which I assume they're well rewarded for. How can that happen? They can't honestly believe all that tosh or expect us to - or can they?

    I just don't get this theory that you're 'trying to get attention', something I've had said to me many times and not just by doctors - the ex-inlaws (outlaws) were very big on that. I could get far more of the kind of 'attention' I want - if I wanted it - by being well and full of beans and able to do all the normal things I used to. The things they say are enough to break your heart. I'm speechless but not really surprised. That's so awful I would say it gave you carte blanche to say anything you wanted in return.

    The trouble is with these idiots, you have to watch every single word you say, or they will come up with some totally whacky 'reason' for your illness just to satisfy their own egos, or tick a box. I once had a panel of psychs say to me 'do you think the reason you don't like liver is because of the blood and the connection with your periods?' (Classic Anorexia question, although I didn't realise it at the time, just thought they were barmy). I said no, I just don't like liver - who does? A lot of people do I know, but they haven't experienced the way my mum cooked it!

    The same bunch asked me about my father dying, and how did I feel about it - yawn - I said it was very sad, but we didn't try to act as though he never existed, we still talk about him. Great excitement in the ranks! 'Oh, you have hallucinations? You SEE your father??'

    Whaaaaat?? No, that ISN'T what I said at all. So it makes you despair, especially when all that cr*p is on your records and in my case it wasn't until I found this forum that I realised I even had the right to see anything, let alone get it removed. (Which you can't anyway). So I'm probably officially a head case according to my notes.

    Sometimes the devil in me gets so fed up with it all that I'm sorely tempted to tell them what they so obviously want to hear - I was abused, my mother was a lady of the night, I have hallucinations, any damn thing to shut them up - but I have just about enough sense left to realise that it would only make things much worse.

    I was forewarned though. After 2 years fruitlessly attending the hospital where I used to live because of pain in the region of my liver, I was referred to the 'pain clinic' where I was offered either an injection which might or might not work, or antidepressants. I never went back.

    Sad to say, I do think a lot of them do still have that Freudian, chauvenistic view of women and it may be another cliche, but perhaps for some inexplicable reason they feel threatened by a woman who shows signs of having any kind of intelligence. I'm no bra burning feminist - hell I have no chest, so I don't even own a bra any more - :-D but with one exception I've never met a doctor who didn't treat me completely differently to my husband. I don't even know if women GPs are any better, the ones I've met seem to be trying to be men. (With the very notable exception of Dr B, who isn't a GP anyway).

    I think they do think of us as a bag of spare parts with no discernable brain, and would much prefer us to sit there like obedient amoebae - incapable of thinking, certainly having no feelings or intelligence, not saying anything other than 'yes doctor' like our grandparents might have. Hate to tell 'em, but with the internet, and women even allowed to get an education these days, the genie is out of the bottle and they'll never be able to put it back.

    They must know this, but will they embrace it - never. It's obviously ALL the patients' fault, so be as nasty to them as possible. I don't want to be controversial here, but it seems like the church and the medical profession are two areas which are still trying for the most part to hang on to the idea of a patriachal society. Well, better not go down that road - bad for my blood pressure!

    Or maybe it's much simpler than that. They are just arrogant egomaniacs, incapable of lstening or admitting they 'don't know', who get their kicks out of saying hurtful untrue things and making us feel even worse than we do already. Let's not credit them with any deeply meaningful motives, we might start feeling sorry for them.

    Oh well, onwards and upwards!

    Kanga xx

  • Well, it was my turn for my jaw to drop open when I read that question about the liver!!! I've never heard such rubbish! I used to like liver, not sure that I do now! lol What sort of mind comes up with sick stuff like that?

    As I told that psy, I think most psys need a psy more than I do. Actually, I think they are evil. They are self perpetuating. Like mold. They have carved themselves out a little niche and they are going to hang on to it, no matter how much suffering that causes, by inventing new psychiatric disease every day.

    I could go on all night about that, but enough is enough! As you say, onwards and upwards is the only way!

    Hugs, Grey xx

  • I know, the liver stuff doesn't sound believable, does it. I think it was when they were all obsessed by the Freudian preaching, which in my opinion does women no favours whatsoever - to put it mildly. 'Wandering Womb' my foot!!

    I totally agree with ALL you've said about the psychs. There may be some humane ones out there, but I've never met one who wasn't twisted in some way.

    I can laugh now about the 'liver and hallucinations' ones, though it wasn't funny at the time. But I was 'sent' to somebody I believe to this day to be truly evil. (This is the first action of the GP who doesn't know what the hell to do to treat you, but won't admit it - offload you on to a psych)

    I went somewhat unwillingly but in hope, as an outpatient to a hospital and saw a guy who seemed hell bent on making me crack in some way. WHY? Who knows. I certainly wasn't prepared for what he did.

    I should have smelled a rat by the way he sat hugging his knees in the corner of the room. And it was just him and me, which I don't think they do any more.

    He would be chatting away quite pleasantly and normally one minute, then would turn completely and begin the most offensive personal remarks and accusations. Then he would go back to the pleasant 'chat' mode again - this was very unsettling and probably designed to be so. To confuse you so you didn't know what was coming next.

    First of all he tried to start an argument about why I was there - 'you're only here to keep your doctor happy' - well, that was no secret, who actually WANTS to be sent to a psych? So that fight didn't take off.

    I was (apparently) 'very unperceptive',

    'didn't know anything about myself', 'was obviously hiding something' (when I couldn't come up with a history of child abuse or any of the other stuff they love).

    When I asked what he thought I was hiding, he said oh something like hiding sick in plastic bags in cupboards (this had also been trotted out by my ex-inlaws some years before). Lovely people. I was never Anorexic, never Bulimic but hey, never mind, they KNEW thin people hide sick in plastic bags in cupboards, end of.

    Anyway, that's only the mild stuff. Not to bore you rigid, and heck, because it STILL upsets me to think about it - there was a lot more along those lines and worse - 'good cop-bad cop' (as if I had done something WRONG, for goodess sake) - and I could tell that he was trying to make me lose it, or cry or start shouting or whatever. I just couldn't imagine why. And the more he tried, the more determined I was that I wouldn't crack. I don't suppose I was meant to be able to 'see through' his tactics, even if I couldn't understand them.

    I did ask him why he felt he had to be so confrontational, and he said rather smugly oh, I don't mind a bit of confrontation. A BIT?? It was like a battering ram.

    OK I wasn't mentally ill, but I dread to think how he might have damaged somebody more vulnerable who did have mental issues.

    Anyway, this jockeying back and forth went on for ages - him trying to break me, and me refusing to be broken.

    But it did get to the point where I couldn't take any more, and knew I was going to start crying if it went on, so I just said I think I've had enough of this, and I got up and left, closing the door very quietly. I heard him shouting after me, don't you want to know what I'm going to put in my report? (One of the things he put was that I left in a temper and slammed the door).

    When I got outside I just fell completely apart, and what was worse I had to drive home and could easily have hurt myself or somebody else for all he cared.

    When I got home I was so wound up that (like a crazy woman!) I was walking up and down outside our house weeping, and our truly wonderful and lovely next door neighbours took me into their home and soothed me down and told me to just try to forget about it. They were so fantastically kind it was unbelievable after him.

    Of course I coudn't forget about it, and actually went to a private therapist during the next few days to try and get it into perspective and out of my head.

    Once I had calmed down, I did write a letter of complaint to the hospital, and had furious words with my GP as to how dare he send me to a thug like that.

    Several months later I got a call from the authorities saying that this guy was going in front of a disciplinary committee because there had been so many complaints about him - I believe one patient actually attacked him during an appointment. Would I consent to having my name used as one of the complainants?

    So anyway, it wasn't just me or my imagination that he had been so vile.

    I said I stood by everything I had said, and they could use my statement. I like to think he got struck off, but we moved and I never found out what happened.

    What appalled me was how on earth people like that got highly paid jobs in hospitals and were allowed to practice their sadism on vulnerable ill people, for presumably a very healthy salary. As I say, I wasn't mentally ill, but it took all my strength to stand up to him and I did break down afterwards. And this wasn't back in the dark ages, it was in the mid 90s. I wouldn't mind betting it stil goes on.

    I made a vow then that I would never, ever consent to seeing a psychiatrist ever again in my life, so you can imagine how upset I was when my present GP lied to me and tricked me into going for 'an asssessment' which was what this other fiasco was supposed to be.

    I'm sorry this has turned into another rant, and that I've gone on so long (another book for Paul :-D ) I hope somebody might find it a little bit interesting or even useful if they have been subjected to the same treatment.

    Yep, onwards and upwards!

    Kanga xx

  • Quote "perhaps for some inexplicable reason they feel threatened by a woman who shows signs of having any kind of intelligence.". Or, as the psychiatrist I was sent to see 30 years ago at the age of 27 said "she must be told to keep away from doctors and mustn't be allowed to use her intelligence to discuss it". Yes, really. According to my GP that letter is still in my notes.

  • rosetrees, that's just terrible, medieval even. Wicked certainly, but sadly not unbelievable. Most of them still seem to be stuck in that mindset, even if it isn't PC for them to actually say it out loud these days. But who sees what they write to each other or say to each other in private.

    I absolutely shudder to think of all the stuff that must be on my notes from years ago when they didn't have a clue what was wrong with me. Not much better now, but at least I have a diagnosis of sorts, even though no cure.

    They really did see women as beneath them, didn't they - and 30 years ago really isn't all that long.

    It's only quite recently that I've been sent copies of letters that have gone to my GP from psychos (no, that's not a typo), and food police etc, and the cr*p they write is unbelievable. If you don't say what they want, they just make it up.

    Of course they have to somehow justify their reason for being, but as I said in a letter to my GP, I'm afraid it isn't my job to justify their existence, keep them in employment, or be just another tick on a trainee's 'case list'.

    But that's all looking at it with the somewhat questionable 'wisdom' of age. What could you do at 27, when you probably had no idea what was being said about you? I feel for you - been there, done that, worn out at least half a dozen teeshirts since it all began at the age of 23.

    Kanga xx

  • Yes, 100% yes. I totally understand. You're upset because that's a normal reaction to what happened. xx

  • So sorry GP treated you like that Kanga. I try to take my husband now if he can get time off, i really do not like going on my own.

    I hope you start to feel better soon.

    Love Angie xx

  • Hi Angie, I keep meaning to get in touch but can't seem to get my backside in gear, I'm so sorry. It's good if taking your husband with you gets better results, but sad that you should even have to do that. It doesn't say a lot that's good about the GPs attitude.

    My husband has the same regular GP as I do, and it's certainly true that in his case the doc will chat away to him and there's no disagreements over anything. Well, SO FAR. I think it's partly because he's male (I hate to say that, but it's true), and partly because his condition (Tachycardia) thankfully responds very well to medication and he can tolerate it well, so no need for discussion or arguments.

    He would probably go with me if absolutely necessary, though it would be hard for him to get off work. I just kind of feel I would rather do it on my own - he hates any kind of confrontation and I'm not sure he wouldn't end up on the same side as the GP just out of politeness, which is the last thing I need! So far his main role is to provide a shoulder to cry on and an ear for my tales of Surgery Rage :-D

    He couldn't have gone with me today, even if I had been expecting a fight - his dad died suddenly a few weeks ago and he is in the USA helping his brother sort everything out. That's probably another reason I feel so emotional - losing my other 'dad' has been very hard, and brought back all the feelings I buried when my real one died.

    I once had a very large and very volatile Scottish boyfriend, who went up to the surgery (not here) and had a huge row with the GP about how he was treating me. He got thrown out, but at least the GP was a bit more polite after that! Ah, the old days...

    Take care

    Kanga xx

  • So sorry that your husband's dad has died. I agree it is very hard to get time off and i try to visit the GP as little as possible. as do not really get anywhere. Im back in Leamington this weekend i will let you know how i go on. Do not be sorry about not being in touch i know how hard everything can be with this illness.

    Lots of Love

    Angie xx

  • Thanks for being so understanding Angie, it has been a bit crazy and stressful and sad here for the past month, so I've got a bit behind with things. I also have a close friend I've known since I was 16 who now lives in Tasmania and has got terminal lung cancer, and I feel really bad that I haven't emailed him as often as usual. So I need to catch up with him as well. I don't know where the time goes, but it just does.

    The very best of luck for Leamington, please do let me know how you get on when you feel up to it. I'll be thinkging of you.

    With love

    Kanga xx

  • Kanga, in that case he was darn lucky you were so restrained, they really don't know what battles we are fighting (conversely we don't know theirs but probably involves yachts) - but no excuse for them to be rude and upsetting 'tho.

    Nothing wrong with getting a little behind (I wish I could get one!)

    My friend at previous work had the indecency of snuffing it without my knowledge (lung cancer can be a bit quick) but we always had a good laugh and I will love her forever! Always knew she was darn sneaky and didn't want to worry anyone.

    So... a stupid doctor giving you grief? (in the big scheme of things? just another tw@t - oops)

    Nah... put him to the back of your mind where he belongs, life's for living and stuff him! (in the best possible taste - Kenny Everitt)

    Seriously you need to get some sleep and let this go - tomorrow is another day - ((hugs)) Jane :D

  • Jane - or should I say Scarlett - today is indeed another day, and I feel moved to say, my dear, I don't GIVE a damn! Well I do of course, but hopefully I'll never have to see him again.

    Sorry to hear about your friend, and even sorrier that you didn't know - it's always harder for those who are left behind to bear it, the ones who go quickly are mercifully released - but it's still hard to let go, even when you know all this in your heart. Sometimes it takes a little while for the good memories to kick in.

    My pal in Tasmania was given a 50/50 chance of two years if he had surgery (lung removed) and chemo, but he opted not to go that route, probably because the odds weren't that great anyway, and the treatment would ruin what quality of life he had left. He decided to go for every alternative treatment he could lay his hands on, and although I'm not sure I would have had the courage for that, he is fighting it tooth and nail in the way he feels is best.

    That was a year ago and the thing appears to be spreading, so although he can stil get about, he doesn't know how long it will be. He has two teenage daughters whom he thinks the world of, and a wife who unfortunately only seems interested in him getting rid of his stuff so that she doesn't have to deal with it when he's gone, which can't make for very stress-free living.

    I do my best to offer words of comfort and support from the other side of the world, but there's not very much I can do which is of practical use I'm afraid. At least, even though he didn't opt for conventional treatment, the docs monitor him and keep a close eye on him, so they haven't left him to just get on with it on his own.

    So yes, in the scheme of things, a stupid GP giving me grief is merely a blip on the horizon - it just doesn't feel like that at the time. But thanks to all the lovely supportive replies I've had, I do feel much better about things today.

    So thanks to you and everybody for your sympathy and support - I really do appreciate it.

    Kanga xx

  • Has anyone thought of the possibility that this crass twerp might have been a member of that most erstwhile organisation that is the only one your GPs are allowed to recommend as a support group... the British Thyroid Association??? And of course they have been the butt of Dr John Lowe for a long time... and of course TUK is in direct opposition to this ignorant bunch of walking egos!!! He is feeling threatened... Go back and finish him off!!! :-D

  • Zephyrbear, I hadn't thought of that possibility, no - but even so, I still don't see why he had to be so nasty and appear to be actively enjoying making me feel humiiated and useless. It's more that side of it I find it hard to take and hard to forgive him for. I've come to expect that line of 'I don't know what NDT is, (yeah, right), nobody ever does well on it and Thyroxine works for everybody' - that just bounces off these days, but it's the atttude I can't stand.

    The fact that he said that Levo is ENTIREY NATURAL, and was obviously either lying or is abysmally poorly informed, isn't really an issue for me - I simply don't care whether it's natural or not. It could be made from grass, knitted, or made of recycled plastic bags (although one would hope not :-) ) for all I care. If it worked and made me feel better and wasn't killing me by inches, I would be only too willing to take it.

    Finish him off...I wish...I don't ever want to see his smarmy face and curling lip ever again as long as I live. Hopefully somebody else might finish him off - preferably the driver of a double decker bus. :-D

    Kanga xx

  • My son-in-law used to drive buses and I wouldn't wish that on him or any other driver... Perhaps a piece of space debris would do the job as he was sunning himself on some ridiculously exclusive beach somewhere!!! Lmao!

  • Zephyrbear, I'm so sorry, that was very thoughtless of me to say that, I didn't mean to cause any offence or upset. I knew a train driver who had somebody throw themself on the line in front of his train and it took him years to even be able to live with it. So I hope you will forgive me for opening my big mouth and letting something inappropriate come out.

    A piece of unmanned space debris would be just fine, but lets not spoil the beach, let him be out in the middle of a muddy field in the pouring rain somewhere - doing what I don't know....don't want to upset anybody else by saying something like metal detecting....I don't know, nicking cabbages or something...

    Kanga xx

  • Don't worry Kanga, I wasn't offended at all... Perhaps it could be a runaway bus... Lol! It's just that my son-in-law is a really sweet guy and he wouldn't hurt a fly... although I can think of a few humans he would be quite happy to dispose of! Haha!!!

  • Thanks Zephybear, the last thing I want to do is to upset anybody.

    Normally I wouldn't hurt a fly either but these idiots seem to bring out the homicidal maniac in me.

    I'm liking the idea of a piece of space debris getting him whle he's nicking cabbages even more than the runaway bus. More surreal somehow. Perhaps a vision to keep in your mind next time they're giving you grief. Like imagining them on the loo with their trousers round their ankles...no, it's too horrible to think about...yeurgh...

  • It's a good job that we have a sense of humour to keep us sane... :-D

  • This thread has, as they say, warmed the cockles of my heart. As I said recently somewhere else, brains are only required on entry to medical school not on exit.

    To the day I die I will not understand why so many doctors think it is clever/impressive/helpful to treat patients with rudeness/disdain/disinterest/shouting/condescention.

    I could, and maybe will, write a book about my treatment at the hands of GPs over the last 40 years.

    As I said to my own GP 18 months ago "it isn't helpful when doctors say the first stupid thing that comes into their head". He didn't disagree with me.

    The big questions for me are:

    a) WHY do so many doctors think that treating patients the way they do is helpful or even acceptable?

    b) WHY does treating their patients that way make them feel good about themselves

    c) WHY do they not feel they should continue to learn? I wonder how many of us have been told by doctors that x, y, z can't/doesn't happen when I'll lay bets that you or I are not the first person to the that it does.

    Woops - I feel a rant coming on. I'm famous for them elsewhere, so I'll stop.

  • rosetrees - I couldn't have put it better myself. Your list is bang on, and echoes all the things I've asked myself many times. I don't know if we'll ever find the answers - if they won't admit to the problems in the first place, or worse feel it's their God given right to behave like that.

    I have often said to my doctor, I can't be the ONLY person on the planet who has these problems with levo and needs to find something else - but nope, he insists that EVERY ONE of his 17,000 patients (obviously not all HypoT), are going absolutely gangbusters on Levo, which has been scientifically tested, and by the way HE is the one with the Medical Degree. (Even if he did get it off Ebay).

    He is just immovable - but at least he isn't as stroppy and offensive as the guy I saw yesterday, so perhaps I should think myself lucky. Sad to think you have to settle for the 'least of the worst'. And at least he didn't put up a fight about T3 once Dr B had suggested it, though he turned me down flat when I asked about it myself.

    It's so obvious from the way I look that I have gone really downhill since this time last year, so maybe it might be sinking in that I'm NOT just doing this for the fun of it or to 'get attention'. Although to give him his due (never thought I'd be saying that) he hasn't ever suggested that I'm doing it on purpose.

    I have no idea if taking a tiny crumb of T3 for several months will have made any difference to my results. I suppose the brown stuff may hit the fan when I go up next week to find out. All I need is for him to suggest 'Maybe it's time you went back on Thyroxine...' Oh noooooo.....well, we shall see. (I'd love to see one of your rants by the way).

    Better stop myself and try to do something useful.

    Kanga xx

  • You know, I think they are issued with a little book when they leave med school entitled "1000 Stupid Things To Say When You Don't Know What You're Talking About". And n° 1 is "There's no connection." Is it just my experience that they will inturrupt you with this line just when your getting into full swing? For example. I was telling one doctor that I first noticed my neuropathy during my second pregnancy. "There's no connection!" he thundered. Well, actually, I hadn't said there was. But, actually, there is, bone brain! Pregnancy upsets all your hormones and can cause all sorts of symptoms. But I don't suppose he knew the connection between neuropathy and hormones. Or even hormones, come to that. Sigh.

  • Grey, sometimes I think it's in their contract, or they get a bonus (rather like people in call centres), if somebody actually has a stroke in the surgery from pure rage, or bursts into tears. Or in my case gives into the urge to fling myself on the floor and drum my heels and scream like a toddler in the supermarket.

    Then they can say, depresssion, anger issues, complete nut case, whatever.

    My GP insisted there was 'no connection' between Vitamin D, B12 and iron and the thyroid, so no, I couldn't have the most basic blood tests. He had to eat his words and do them anyway (plus a lot more) when the endo told him to, which I was unreasonably glad about. :-D Who cares if I'm off his Chirstmas Card list, the feeling is mutual. Nothing like being backed up by a highly respected endo, even if the effect doesn't last.

    Yet she's so humble - when I wrote briefly telling her how things were going with the T3, (I couldn't afford another consultation at the time), I got a very sweet card saying thank you and she was still learning from her patients. If only a few more GP were like that - oh, there goes another pig flying past...

    xx

  • Oh, Kanga, you're a funny lady! You've brightened my day!!! I look forward to reading a lot more of your rants - although I wouldn't wish another experience like that on you - it's just that I enjoy reading what you write. You haven't written a book by any chance, have you? The Collected Rants of Kanga. I sure it'd sell a million! lol Might even make a film.

    More power to your elbow!

    Hugs, Grey xx

  • Well, thank you for the kind words, I try to raise a grin if at all possible. Sometimes it's either that or cry and usually there's some absurdity about it somewhere that you can latch on to.

    I haven't written any actual books, although I've had it suggested to me more than once that I should - hmm...The Collected Rants of Kanga'...I like it. Trouble is, it's one thing to write off the cuff rants, but another to actually write a book. I have done some bits and pieces of writing but have never done anything with them.

    If I thought I had a film in me, I'd be on it tomorrow! Funnily enough I always wanted to be either an actor or a writer when I was young, but didn't really come from the kind of background where that was the kind of thing that went down well as a 'real job'. Going to Art College was about the best I could manage when the parents, aunts and uncles all wanted me to work in a bank or be a secretary.

    Now, no offence to anybody please, but that just wasn't my thing, I would have been in a basket years ago if I'd been forced to work with figures, and to this day I can't even touch type after some pure sadist put the 'A' right over there where your little finger has to go.

    Somebody once told me my sense of humour would be the saving of me. Not so sure about that, but I'm always glad when anything I say makes somebody smile.

    Right, back to polishing my elbows! :-D

    Kanga xx

  • Hi Kanga,

    There's nothing more I can say that others haven't already expressed brilliantly, but I just wanted to say that I really feel for you and totally understand your reaction right now...good for you for getting it off your chest.

    Reading the experiences of fellow forum members actually helps me now, as I know it's not just me. I've been floored by some of the things the docs have said, and come out thinking "if only I'd said such and such", but I now feel forewarned!

    Well done for sticking to your guns.

  • Thanks Jennifer - I wasn't prepared at all, and like you, I only think of what I might have said once I'm outside on the pavement thinking what the hell happened there?

    I've bitten my lip so many times in the interest of straightforward courtesy, not wanting to descend to their level, and for my own sake because losing it only makes me feel ill for days. But, sometimes losing it seems to be the only way - if you can get them to shut up for long enough that is, which doesn't normally happen as they just talk or shout over you.

    But then - sometimes you get the feeling that they're just goading you, wanting you to say something that will give them a legitimate excuse (in their eyes) to go off on a rant.

    Rather like the drunken boyfriend who will go on and on saying more and more outrageous things until you can't help answering back, which gives him the excuse to smack you in the face. Not that a GP would dare do this, but it feels like they would if they could get away with it. Either way, it's horrible to be on the receiving end, especially when you feel so ill anyway.

    I don't know if I stuck to my guns or not - just leaving seems a bit wimpy, but I knew from his attitude that further 'discussion' would just descend into a screaming match, and I wasn't up to that.

    I think - hope - we all benefit from reading others' experiences. I know I go on a bit, or rather a lot, :-D but maybe I can help somebody along the way the same as they've helped me. I hope so.

    Kanga xx

  • Kanga I'm so sorry you had to go throught that. My understanding from reading other posts is that occasionally GPs are amongst us.

    If you are a GP; welcome. Please be aware that it is not an urban myth; many many of us are treated by your profession as clueless sheep to be fobbed off with whatever treats the symptoms instead of tackling the condition. I am heartily sick of fighting for even a chance to be well and was only diagnosed in October last year. I will not submit to the all too often shoddy treatment of so called professionals who consider themselves next to God and twice as knowledgeable; how unthinkable that a patient should want to be consulted and given choices in their treatment. Take this pill and you'll soon feel better ?

    I freaking wish. A pity more GPs didn't suffer hypothyroidism then perhaps something might get done. Wouldn't, couldn't wish this on anyone, though.

    Raps xx

  • Thankyou for that raps. I sincerely hope that indeed some GPs read this, and not just to rub their hands at our plight and how successful they're being in obstructing our efforts to get well.

    One thing is for sure - they aren't taking a blind bit of notice of the so called rules laid down by the NHS which states 'first do no harm' and says that they are supposed to consult us and involve us in our treatment. Or maybe I'm getting mixed up with the Hippocratic Oath which I heard somewhere that our lot don't have to take.

    Either way they seem convinced that they are a law unto themselves - which woud be fine if they actually knew something or did anything other than dish out painkillers and anti-depressants. Oh and insults by the bucketload. It's quite frightening when you realise that you know more about your condition than your GP does, yet he or she isn't the least bit interested in finding out the true facts.

    I'm afraid I'm not as charitable as you. I would wish a heavy, heavy dose of HypoT (or HyperT) on ALL of them, just so they could see what misery and havoc they are helping to cause. I can guarantee that there would be no more talk of 'I've never heard of NDT', or 'Thyroxine works for everybody', or 'Vitamin D, B12 and iron has nothing to do with the thyroid, so no, you can't have a test'.

    Obviously never going to happen, but boy wouldn't it be great. :-D I'm such a nasty person....and not the least bit sorry.

    Kanga xx

  • kanga and greygoose you have given me a right old larf this morning. I LOVE the thumping fist down on the desk bit, great fun. I think we should terrify our doctors a bit more, they might take more notice of us. I did a similar thing when my GP was away and replaced with a locum. I have severe chest problems and must not get a chest infection so have to have antibiotics when I get a cold to prevent secondary infection. Now I am on Viamin D so it's different but then I went to the surgery, explained what I needed, it was written on the computer the letter from the Consultant and the GP said "if you think I am giving you antibiotics you are very much mistaken"!!! At which point I did the similar fist thumping thing after slinging my chair backwards and then stormed out slamming his door as hard as I possibly could, so hard that the frame nearly came off. I'm surprised that they didn't call the police! I got my pills from the Consultant with just a phone call. I then called the surgery to tell them and they said the GP had gone home sick just after I left....ahhhh shame!

  • Oh kanga, forgot to add, please write a letter of complaint including a paper showing the difference between Levothyroxine and Natural Thyroid, the clue of course being in the "Natural". We must educate these people.

  • I think what I might do is take the evidence - if can find it - with me when I see my own GP next Monday to get the results of my test.

    Then I will ask him to pass it on to the GP concerned because he obviousy is wrong in thinking that levo is to quote 'entirely natural'. I can write a short letter about how much he upset me and put it in with that. Then I'm not actually making a complaint as such, which I fear will make my position even worse, but at least I will have made a point.

    Either way it won't make a blind bit of difference, but a least I won't have put myself in the firing line for any more vindictive nastiness, which I'm quite sure the other doctor is more than capable of if I put in an official complaint. I'm sure he would lie and deny it, and I would no be believed, (as a mere patient, a certifiable head case you understand, and a female to boot).

  • Perhaps he's still living in the pre-synthetic T4 treatment days when NDT was the ONLY treatment available. Was he the same age as Methuselah? :-D

  • Well no actually, he wasn't, although his hair was a bit wild. He was probably in his late 40s, early 50s maybe. I had great hopes of my regular GP when we first came here, as he's only in his mid 40s, but they don't seem any better than the old fogies. In fact in the past I've had more respectful treatment from fogies. Pre-thyroid of course, they all seem to go ape when it comes to that subject.

    While this plonker was snottily telling me he found it VERY hard to believe anybody could have an adverse reaction to Thyroxine ( in other words either IT ISN'T CONNECTED or I'm a liar), I was finding it VERY difficult to believe he really truly doesn't know that Levo is synthetic, and that he didn't know what NDT was. (well, he contradicted himself when he said he didn't know anybody who was doing well on it, so he was lying about that as well).

    It's a bit weird really - it's as if they've all been hypnotised. At the first mention of any word remotely connected with the thyroid - specifically the terms 'NDT', 'T3', Vitamin Tests', or phrases such as 'levo makes me feel ill' - you will immediately lose your temper and treat the patient as though she is a complete idiot. More than usual that is. Tell the patient whatever lies you have to, make them feel humiliate and stupid, but shut them up at all costs. This tape will self destruct in 5 seconds. If this fails, eat the evidence. Your life depends on following these orders and any deviation will incur severe penalties, (being hit on the head by space debris while nicking cabbages for example).

    Hey, maybe that's how they teach them at med school these days. Mass hypnosis. It's a thought :-D

  • Oh Phoebs, that's hilarious - you scared him so much that he went home sick. Priceless. Are you sure he didn't just have to go home to change his trousers, if you get my drift...

    But, unforgiveably high handed to just refuse the anibiotics - I wonder, do they actually read what's on the screen, or is it just an excuse not to look us in the eye?

    My GP seems to respond better to silence and the brimming eyes :-D I had an Irish Setter who was very good at that, probably where I got it from. Though probably putting my head on the GPs knee and gazing adoringly up at him isn't a very good idea. It would probably send him home sick or instigate a change of underwear at the very least.

    When he got my Vit D test results, he started off telling me to get an over the counter multivitamin (already refused in advance the megadoses that some people have had couriered to them as a matter of urgency). No, there was nothing he could do. I just sat there and looked at him, to the point where he became so uncomfortable that after a lot of paper shuffling he decided there WAS something he could prescribe after all - Fultium D 800, not much but better than nothing.

    That was the historic day he even admitted that 'they' didn't know much about Vitamin D and were only just getting more information about it - not from us obviously, as we know nothing.

    The other guy was so much more agressive that I might have felt moved to doing some desk thumping, except I coud hardly move. Probably the thing to do is prepare your tactics before you go - Sad Setter eyes or Rottweiller thumping of the desk - except you don't always know who you're going to get or how strong you're going to feel. Hmm... tricky....

    Anyway, well done for putting the sh*ts up him...

    Kanga xx

  • Kanga

    Rod posted this link on another thread

    gmc-uk.org/static/documents...

    It would be good to compile some quick responses to awkward doctors - I think NBob is collecting some info too.

    I'm hypo untreated and cannot muster much of a response quick enough, and I think there are a lot here like me! I used to be quick witted! hey ho! onwards and downwards. Jane :D

  • Jane, thanks so much for that, it was what I meant when I mentioned earier that they weren't following the rules laid down, but I had no idea where to acess it.

    It will be interesting to see what NBob comes up with too.

    Even looking at the list on the first page, you can see that there are a LOT of things that they're blatantly disregarding. Trouble is, there's normally only us and them in the room, and it's all a matter of interpretation. We know darn well from the way they treat us that they're not playing by the rules, but if they deny it and make us look like paranoid liars, how can we prove otherwise?

    Still, a very useful document, and I will take a copy of it with me next time.

    Don't beat yourself up about not being able to think of a quick pithy response. I think most of us are like that, even if we are diagnosed. It's the environment and feeling at such a disadvantage that does something to your brain-tongue connection.

    I think I'm fairly quick witted, or as much as I can be these days, but while you're trying to think of a response which will put your point across without making them even more hateful towards you, somehow the right moment has always passed. Even supposing they stop to draw breath long enough for you to get a word in at all.

    They of course don't have to worry about upsetting us because they don't care if we hate them, (in fact they don't care full stop), so they don't have to think before they speak - they have the huge advantage of being able to say the first vile thing that comes into their heads, usually without fear of recrimination. That's what makes it so hard. They can be saying anything they like, and usually we can only be putting in the occasional squeak of protest. Or if we have enough energy, a lovely bit of desk thumping, which I now long to be able to do.

    I think I'll make it my mission to send my GP home to change his underwear.

    No, please don't say onwards and downwards. I know that's what it feels like I really do, but we mustn't let the buggers beat us. :-D Onwards and sideways maybe??

    I'm truly amazed at the response my little tale has received, and feel honoured that so many of you have come out to talk about your experiences - even though it is sad to hear so many variations of the same thing. Still - and we keep saying this, but it's true - at least we know we're not alone in the way we feel. And thank goodness for the forum, I can't say that often enough.

    Kanga xx

  • no worries Kanga, I just keep smiling! (if only to confuse them) :D

    Here's Nbob's post btw

    thyroiduk.healthunlocked.co...

    there's a lot of us that need to be heard!

    Jane xx

  • Thanks Jane, that's very interesting and useful. But it made me feel sad that so many people have such awful tales to tell.

    It's great that Nbob is taking the trouble to do it, everything helps.

    Yep. keep smiling, even if through gritted teeth! :-D

  • Yep - my smiley! xx

  • Hi

    Reading your post was like reading a post I could've wrote myself, and probably many others, fought monthly for nine years with my GP surgery ..and honestly thought I was going to live the rest of my life like this,, four years of asking to see a consultation was told NO.. wasn't my 300mcg thyroxine daily was doing me the power of good?

    Got my long awaited consultation

    november last year ...... was total waste of time your levels are fine.. thats it

    Asked for a second opinion = if you insist =HELL YES. to be told my second opinion was going to be with him again

    Second opinion was three weeks ago... different consultant and am I so happy it was. .told me he enjoyed reading my argumentswith GP over my diagnosis and agreed with me I don't convert and my blood tests prove that bottom line was given T3

    Keep at them T3 is not expensive. Also received a fantastic copy of letter sent to my gp from the consultantand I am going to frame it x get your life back

  • Here is a small explanation re the differences between Natural and Synthetic Levothyroxine.

    What is the difference between synthetic and natural thyroid medications? The main difference is what they are made from. Synthetic thyroid medications are made from levothyroxine sodium while natural thyroid medications are made from dessicated pig thyroid. The other major difference is what thyroid hormones they contain. Most synthetic thyroid medicines, like Synthroid, contain only T4. The natural medications, like Armour contain both T4 and T3. There is a synthetic T3 medication available called Cytomel. Some people take both a synthetic T4 and a synthetic T3 medication to get both thyroid hormones. There is also one synthetic thyroid medication that contains both T4 and T3 called Thyrolar.

    There is a lot of info such as this on this forum (don't know where) and can be Googled.

  • Thanks Phoebs, I will print this out and also do some Googling, and will take it with me next time, even if only to prove a point to my own GP. He wasn't the one who told me that Levo was 'entirely natural', but he is one of those who don't appear to want to hear about anything else.

    If nothing else, I can leave a copy for the egomaniac ignoramus who gave me grief, without actually having to meet him face to face ever again.

    Kanga xx

  • hh46, well done for fighting your corner, even if it did take such an awfully long time to get a result. Just shows that you only need ONE person who has a brain and is prepared to listen to you and act in your best interest. It's finding that one person that's the problem for many of us!

    Don't you wish the pendulum would swing the other way and your wonderful consultant was the rule rather than the exception. So glad to hear you have had a positive result after struggling for so long. All the best.

    Kanga xx

  • Please keep fighting them on this... looking forward to my next GP appointment to see what he has to say regarding the letter from consultant and also on me getting T3. Pretty sure it will be interesting lol. I am like a dog with a bone and even though I have been given a lifeline I'm still angry that these people we entrust with our health and wellbeing can put us through years of misery because of ignorance, I know its still early days onT3 (3 weeks) but I remain hopeful that it will work, please annoy the life out of them and good luck xx

  • That was brilliant, Kanga. I am one of the undiagnosed and see a private doctor. REading that rant lifted my spirits. Say it like it is. I shall copy it for my files. I decided to give up very quickly on NHS doctors as it wasn't worth the stress or wasting my energy. I wanted to get better. I had already transferred surgeries and took a list of symptoms along to the new doctor, who said hypothyroidism and then immediately backed down when he saw that now I was coming within the reference range of the black hole-sized TFT (biochemically that is). Previously it had been raised. A couple of times I have tried to get blood tests for vitamin D etc done on the NHS as tests are the most costly part of getting private treatment. After the first appointment private docs' fees are tolerable if you don't see them that often. He had always refused and even said private doctors test T3, hint hint. I decided to always be very polite to him and that if ever I needed to go to the doctor for an unrelated problem I would go to another one in the practice. I would never bother telling any of them that I was being treated for hypo, not until the new world dawns and all us undiagnosed (and all the poor people who have been fobbed off with the diagnosis of CFS/ME/Fibromyalgia) can come out of the closet.

    Doctors are not taught about the niceties of diagnosing and treating hypo. They are told their test is infallible, the reference range is based on healthy people, and if your tsh gets near being suppressed then you are going hyperthyroid, even if you feel perfectly well. There are some people in this world who feel fine on Levothyroxine, or who don't complain about residual symptoms, I know one who suffers quite badly. They are physicians, taught to dispense physic made up by the pharmaceutical companies. I will get out of them what I can when necessary and otherwise avoid them like the plague, my good doctor excepted.

  • You seem to have a good strategy that works for you Chillyfeet, and I don't blame you a bit for giving up on them as far as your thyroid is concerned. I thought that was more or less where I was at, as my GP had stepped back since I started seeing the private endo, and apart from rolling over and prescribing T3 (for a wonder) at her request, he has been more or less letting me get on with it.

    I can't afford to see the endo very often, so I would have liked a bit more backup from him, but it was never going to happen. So be it.

    That was why I was so unprepared when the other fool attacked me over it when I went to the surgery about something entirely unrelated. I just wasn't prepared for the onslaught, and if I'd had any sense, in hindsight I should probably have declined to discuss it with him. If you could call it a 'discussion', it was more of a one sided rant on his part, while I sat there like a rabbit in the headlights.

    For better or for worse, I was already diagnosed HypoT before we ever lived here, so it was on my notes and I didn't have the option of not telling them about it. In any case, it wasn't until a year ago (after 12 uneventful years, at least regarding levo), that it started to disagree with me in a big way, so I never ever envisaged a situation like this. I was woefully ignorant about the thyroid, thought HypoT was very common, and just continued to take my little white pill every morning. I had been feeling a bit off for several months before the Big Bad Reaction, and also had a horrible itchy bumpy rash on my lower legs for about three years, but never connected it with either my thyroid or the levo. Now I can see it had probably been creeping up on me for ages.

    Having said that, I have a HypoT and on levo friend who is 62, has long thick hair down to her waist without a shred of grey, boundless energy, and could honestly pass for 35. She has a figure to die for. She's taking the exact same dose as I was at the time it all went wrong. Actually, I'm not sure if I think of her as a friend any more, or want to strangle her because I'm so jealous! :-D Letting my baser instincts take over here I'm afraid. She just thinks I'm depressed - oh well, every time I look at her I am! Well at least my husband thinks she has a funny nose and heroically doesn't compare her figure to my matchstick of a body, at least not out loud!

    I did most of my vitamin tests myself at home through the private labs, which didn't work out too wildly expensive, as the GP had refused point blank any requests from me. He had to repeat everything and more once I'd seen the endo anyway, and I didn't ask her to do it, she requested (or rather ordered) them as a matter of course along with thyroid antibodies and all the other things he should have done.

    So in a many ways I'm better off than a lot of people in that I have at least got a bona fide diagnosis, although I was ill from 1972 to 2000 not knowing what it was - it might not even have been thyroid, I don't know. It was diagnosed by accident anyway, and I have no idea what a 'normal' range for me might be. It's getting the right medication that I can tolerate that's the big problem since the levo went west.

    Anyway, glad to have lifted your spirits with my mega-rant. It has helped no end to be able to get it off my chest, and I'm very grateful for so many supportive and laugh out loud replies. Good luck with it all...

    Kanga xx

  • Thanks Kanga. Yes, it's like there are two species of us: the deserving hypothyroid person who seems to get on perfectly well with being treated with levo, and the undeserving who are impeded all the way down the line in their search for better treatment because they do not respond to the usual protocol. I suspect that the former didn't have the disease very badly when it was picked up. You had it for years and mine had definitely taken a turn for the worse when a random test showed I had a raised TSH in NOvember 2011. I had probably been developing it since around 2001. Like you I knew nothing about the dreaded thyroid and had to educate myself PDQ if I wanted to get treated. Good luck to you too. It must have been a real shock to have been torn off a strip by that arrogant doc. Nasty Person.

  • Yes, it was like being slapped in the face. What really gets me is the way they tear into you as if you had personally insulted them or done something terribly wrong - I'd never set eyes on this guy before and he assumes he has the right to demolish me after roughly 2 minutes chat about my accident which was what I went up there for.

    I'm not sure there's any other 'profession' that would allow someone to get away with this, never mind that they're supposed to be if nothing else reasonably caring and compassionate. Even if they know bugger all about what ails us. It's not as though we're in the boardroom or the kind of environment where you expect to have to take a verbal battering. Theres just no excuse for it.

    I can't bear that feeling of bewilderment and 'what did I do to deserve that?', and as somebody who in the past has been a victim of physical violence (another story), the feelings of shakiness and tearfulness and actual fear, stupid as it sounds are very similar to those you get when somebody has you by the throat up against the wall. I absolutely despise these (mostly) men who not only don't know how to treat us, but don't care how they hurt us emotionally or physically. Then later of course anger sets in, and you end up as others have said, replaying it over and over and hating yourself for not being quick enough to think of a pithy response, or for just caving in.

    You are most likely right when you say that people who do well on levo have had their condtion picked up before it got a real grip. It's so hard to know, as we're all different - a cliche but true. I don't know if I had thyroid problems from the start, or the virus I had set it off or what. Something happened that's for sure, but what it was nobody could ever seem to say (except Anorexia, which it definitely wasn't!). I didn't really have any hypo symptoms at the time except fatigue, and although I was never going to be 100% ever again, at least I could function, which is more than I can say about the past year. It's awful to think of people having it for 10 and 20 years without anybody knowing or caring.

    I would have been at a complete loss about the whole thing if I hadn't found TUK, because nobody ever explained anything to me. When I was first given thyroxine I was reluctant to take it (just another damn tablet), and asked my then GP what woud happen if I didn't. She said, you'll go mad - which seemed a pretty good reason for getting it down my throat. :-D I'd held off for about a year so I had a nice pile to get through. At the time I certainly didn't feel any worse for not taking it.

    As it never ever made me feel any different - no better but no worse either, I just carried on taking it and they increased it over time, presumably going by my TSH. I went from 25 mcg to 125mcg over the years and never felt any different. Then came the bad reaction, and the rest as they say is history. In a perverse kind of way I suppose I was lucky to even get diagnosed, and even luckier to be OK -ish on levo for 12 years. Hmm... not sure 'lucky' is exactly the right word.

    On the other hand, I'll never know if I really needed levo in the first place. My endo told me something really interesting. She asked if I had any pets, and I said not now, but we used to have 4 house rabbits. She said she was going to ask me if I had rabbits, because apparently they have something they give off - not sure how she described it now - that can give you a falsely raised TSH reading! When I was first diagnosed, we had had our house bunnies for three years. So, although I wasn't ever 100% after the virus in 1972, did I actually have HypoT in 2000? I'll never know because I undoubtedly have it now - lost all my body hair and that on my head following fast, plus a host of other symptoms of course.

    I sometimes wonder if it was a bunny induced high TSH, and once I started taking levo, my body didn't have to produce any of it's own, so stopped, and Bingo, then I really did become HypoT. Far too late to find out now, but I thought it was interesting. How unlucky would you have to be to have a falsely high TSH caused by your pets, and then get sick for real because of taking the tablets! I don't know what happens if you take levo you don't actually need, so I could of course be talking out of the back of my head.

    Anyway, I know I shouldn't dwell on these things, just have to try and make the best of it. I just never envisaged my life taking this downward spiral, any more than you did or anybody else on the forum. All we can do is Keep on Keeping on.

    Kanga xx

  • x to you.

  • Thank you x

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