Is this tough love, or is my doc killing me by inches?

Okay… had another doctor's visit today, ostensibly to check blood test results for thyroid and coeliac disease. After establishing this, the doc does as I expected him to and said that my thyroid results were normal. Which they were. The trouble is, they hadn't been normal 5 days beforehand. Then they were high TSH, low(ish) FT4, just as they had been 3 months previously. What's more, during those five days I had been (forcibly) off Carbamazepine, in hospital, and it's a known thyroid/thyroid test disruptor, so I would have thought that might be a primary suspicion, i.e. not normal at all, but a glitch produced by drug withdrawal.

Oh no, He consulted his little book to see if I was telling him the truth about Carbamazepine, I assured him I was. After a lot of faffing about, I reassured him I didn't want to do anything, just retest thyroids again in 3 months time. He accepted this. We moved on.

Now, I have symptoms of Sjogren's Syndrome (dry mouth, dry eyes; dry everything). I have mentioned this to him before; he's not interested. Now I have a rash. I've had it for more than 8 months, steadily getting worse. He thinks it's Pityriasis Rosea. I think he could be right. However, we might both be wrong, especially when it is getting worse, not fading away as it should be by now. Also, given that I have other symptoms of something suspiciously like Lupus (unexplained anaemia, Neutropenia, the usual culprits of fatigue and joint pain), it means there could be a bigger problem. Carbamazepine can also produce what's known as 'drug induced lupus' and as I may be stuck on the drug, it seemed intelligent to check it.

Nope. As I expected, he is not happy. I get more loooooooong lectures on how, basically, I am creating mental illness in myself. When I try telling him that I have a lot more symptoms than he sees; I only come to him with obvious physical manifestations, such as the rash, and that I have things like fatigue and black, BLACK depression, as well as – let's not forget this most important of problems – trigeminal neuralgia, a serious neurological condition, so Lupus is not really a far-fetched madness spun out of all my hours on the internet. This makes no impression whatsoever. Apparently, I have the depression BECAUSE of the internet research. I have given myself health anxiety, like it's a real thing. In shorthand, I'm making myself mentally ill, neurotic, bonkers. Or if you want to phrase that another, altogether more blunt way, it's all in my imagination.

When I actually confronted him with the fact that he kept treating me as if I was 'worried well' and not sick, he pulled a face that said 'Well, that's a moot point; to me you are well'. Thanks. That explains a lot.

After that, I then had to ask him for a copper deficiency test – and I know that was a real wild card, and told him so, but me appreciating that I know I'm asking him for something very rare and frankly unlikely cuts no ice, because THEN, I had to deliver my coup de grace – I wanted a referral to see a Non-coeliac gluten sensitivity specialist in Worcestershire. However, I was at least prepared for that one and told him to look the man up and do his due diligence, knowing that would at least make him feel more in control. He took the address I gave him, looking as convinced by the idea as if I'd asked him to time-travel to the dark ages and consult a soothsayer, so we all know what he's going to say when I see him next time – bring on the next fight.

And that was that, EXCEPT, at one point, when he was done with his sermon, he turned to my partner and asked him if he thought he was in the wrong, and my partner, said no, he agreed with him. He was careful to say that there was something definitely off-kilter with me, I wasn't 'right' but that yes, I spent too much time studying illness.

Oh, what a blow. Aside from the disloyalty, I had no idea he too thought I was bonkers.

Understandably, I was beyond upset. I am usually depressed and exhausted when I leave the doctor's: the fighting, the sense of making zero progress, not being believed – the list is endless. But this is the first time I've felt stabbed in the back. I was walking to the supermarket, tears streaming down my face, barely able to articulate how betrayed I felt, and determined – absolutely DETERMINED to kill myself. If I was really so mad that I couldn’t see my own madness, then I was in serious trouble and there was no point in going on.

Now, I have calmed down. I've talked to my partner, and I was indeed shocked to discover that yes, he thinks I do too much health related stuff. Too much research. But for me the worst thing to come out of all this is incredible self-doubt.

As many, if not most, of you know, it's hard to believe in something when everyone keeps telling you, you are imagining it. But you kind of reassure yourself that docs don't know it all, don't see you at your worst, or know all your symptoms. Nor do they care enough to see the big picture, or do anything about it even if they did. But I seem to have created a monster here. My doctor no longer believes ANYTHING I'm telling him, I suspect. I'm sitting there with a rash, thyroid results that are not really 'normal' (he himself classed them as subclinical when he first saw them; so did another doc in the practice who was actually first to see the results). I genuinely have itchy eyes and dry mouth and skin. I have TN. These things are real. Before I got B12, and then Vitamin D, I was so depressed I could barely function. I was depressed for years before I fell ill. I even had other illnesses (bad case of gallstones) before I fell ill. I've told him this, but it's like I'm saying, 'Oh, my big toe hurts, I must have Lupus'.

I genuinely no longer know if I AM neurotic, if I'm turning molehills into mountains, if I'm doing myself more harm than good, if I have ANY kind of problem at all or my TN is just the random hand of God (my doc's belief). I really don't know ANYTHING.

I have never felt so uncertain and undone in my whole life. I am literally sitting on the edge of giving it all up, purging the computer and just getting on as best I can; or writing to the doc and telling him how I see it, or just bypassing him altogether and taking my chances with another doc (I'm terrified of making things worse – at least this doc gives me tests, albeit with a lot of grief). But I've reached the stage of not wanting to go to see him. I was sitting in the waiting room beforehand, really nervous, and had to keep myself there by main force. I could feel a panic attack coming on. (That doesn't make my mental health sound too good, does it? Maybe he's right.)

When you've reached that stage, I'm not sure you have anything to lose any more.

Anyway, he's agreed to let me have ANA testing for lupus/Sjogren's, although not without telling me that healthy people get false positives all the time, and making it clear that only a really strong positive would be taken seriously by him – that's cheering; it's like an announcement of foregone failure. He's even let me have the copper test; although whether I'll actually get it or not, remains to be seen. He said, 'If we can do it', which wasn't reassuring.

What's really wrong here is I am running out of steam. I've been doing this for a year or more, and about three years before that, fighting the loss of my gallbladder. I can't face a future of nothing but more fighting, and the lack of belief in my credibility. It's completely undermining my self-confidence and I can feel myself wanting to back off and give up. And maybe that's a good thing. Maybe it's exactly what I need.

I really don't know any more if my doctor is actually telling it like it is, forcing me to see the hole I've got myself into, or if I am yet another woman battered into submission by men who just don't get it. I know no-one on a forum can really help me here, because as kind and concerned as you are, you don't know me; don't know the reality of my symptoms and how real or significant they truly are, but I feel so alone with this and literally have no-one to tell, so here I am. I have no idea what I am looking for either. Just a place to vent, to be able to say it out loud and see if I can hear my own madness, my self-justification. To listen to myself and see if I am actually in denial or deluded or whatever it is that would make someone do this if they didn't have to.

Well, I'm all written out now. Nothing else to say. I only hope I can learn something from that epic moan and didn't inflict it on you all for nothing! X

123 Replies

  • Oh Chancery, I am so sorry to hear that you had to go through that with your GP and then hear that your partner agrees with him. All I can say to you is I have had the same with GPs and almost gave up. It took years to find a helpful one who I felt believed me. You are the only one who truly knows how you feel now, or how you used to feel. Think about why you keep pushing for answers, would you be putting yourself through this with your GP if you were truely well? I think not. So trust your own instincts as you and only you, , not your doctor or you partner, known how you feel. Knowledge is the key to getting answers so keep on researching. One day we will be prioved right and the NHS will finally catch up with us. Keep those fingers tapping to look for answers :-)

  • Thanks, Ib003, I appreciate that. At the moment I feel like a snail out its shell and far too touchy to think rationally, but I'm hopeful that when the hurt passes I shall be able to see clearly how things stand. If I am getting over-invested in being sick then I will dial it back and take up karate or something! If, on the other hand, I can't shake of the conviction that I have something 'bigger' wrong with me then I shall have to adopt a strategy, and if that means sticking my neck out and changing docs then I'll just have to do it and suck up the fall-out like a man!

  • Chancery, I can't imagine a doctor agreeing to run tests unless they think there is a chance they may be positive and perhaps causing the symptoms you are complaining of. At least he has agreed to do them, even if grudgingly. Sjogrens is a bit of an iffy blood test though and sometimes a lip biopsy is needed to confirm. Your thyroid results have been fluctuating and dry gritty eyes are definitely a hypothyroid symptom and hypothyrodism and Sjogrens can be connected, usually due to autoimmune issues though.

    You have symptoms. Just because your GP can't determine why or what to do about them doesn't mean they're in your head.

    The question to your partner was loaded and poor guy fell right in to the trap. So he thinks you spend too much time researching. If you spent hours gardening, knitting, decorating or cleaning he might think you spent too much time doing that too.

    When I was very unwell and being told it wasn't thyroid or it wasn't Levothyroxine I believed them, but not for long, and I hadn't started researching thyroid then.

  • Well Clutter, that's a bit of a yes and no! He actually said to me "I don't want to be that bloke five years down the road, when you come back to me and say, I've just been diagnosed with lupus. No thanks to you, mate." In other words, I'm covering my ass here. So it's more that he's operating from a place of fear than any belief in the possibility! But hey, I'm getting the tests.

    And I agree with you about my partner. He's a people pleaser and he was trying to be diplomatic. Of course, I didn't need or want him to be diplomatic, I wanted him to step up for me, validate me. After all, he sees all the symptoms on a daily basis; my doc doesn't. He was most apologetic afterwards, very contrite, but it was a shock revelation that he felt I wasn't doing myself any good doing too much 'health stuff'.

    But yes, the real problems will start if I get a weak positive (whatever that might look like; no doubt my doctor will gleefully tell me), because then he will be hard to shift for further testing. For once in my life I am hoping it's a clear-cut negative. Although I know they give plenty of false negatives too (not a brill test, that one!) I have lost all urge for the fight.

  • Chancery, You're looking for a way to feel well and that's worth fighting for but it doesn't have to be 24/7. Whatever your GP's motives, he has agreed to test so you can relax a bit while you await the tests and results. Don't worry about strong or weak positives now. Deal with it when you have the results.

  • Ah, I don't do relaxing, Clutter, not if I know I might be facing another 'combat'! I have this thing, left over from a childhood with no parental medical support, where I have to be prepared to the hilt. It stands me in good stead because I am always forearmed and can fight my corner effectively (hence me always - so far - getting the tests I ask for), but you are absolutely right in what I think you suspect but are being too kind to say! I worry too much beforehand and am far too perfectionistic.

    I don't know if it's a good trade off or not, but it surely does take a toll. Sometimes I think I've actually made myself sicker/er, trying to save myself from sickness!

  • Chancery, I prefer to cross bridges when I come to them and deal with what is rather than what if.

    No criticism of anyone doing different. Some people need to explore all options in order to feel prepared.

  • A great way to do things; I admire that. You must save yourself a lot of unnecessary heart ache and stress. Perhaps you should run an online class here for the rest of us who have never managed to master it. I, for one, would sign up!

  • I can empathise totally. I've had a lot of serious things wrong with me throughout my life. Eventually I get the proof that I was telling the truth and if I'm lucky I get fixed. Once that is done any new problem is like starting at the bottom of a very long ladder again. I'm assumed to be a liar or someone who exaggerates and I have to fight my way to the top all over again.

  • Oh yeah, HB, I seem to go through that one every bloody visit! I've been cutting back my TN drugs for... oh, must be six months, I think, easily. If not more. Yet today, when I report that I'm now down to 300mg of Carbamazepine, and for the first time it's not doing too well (further adding to my depression), he says to me "And why are we trying to stop Carbamazepine?" as if I'm doing something irresponsible. He knows. He's been told, over and over. We've discussed it, over and over. It's in his notes, over and over.

    We only get ten minutes, once a month-ish, and during that time I have to cram a LOT in, because I've been busy researching between-times. I swear I waste half the appointment going over the same stuff with him. It drives me nuts. But what can you do? It's just part of a larger syndrome of not wanting to take me seriously, because it means more work. After all, if he listens, he might have to do something.... (Sorry, too cynical tonight.)

  • Hi guys I'm trying to convince my doctor my thyroid is hypo had blood test it came back 3.2 in 2013 apparently it was 3.4. I explained today that a lady my husband was working for (carpenter) said she had hyperactive thyroid and I had same symptoms, except the weight gain no matter how much I diet or exercise it will not shift. I could wake one morning and feel sliming but come evening look 9 months pregnant with. A massive double chin! The doctor today said he will not do another test the lab will not test the t4 let alone t3 as my results are normal and maybe I should eat less exercise more I said eat lee that would mean eat nothing then he shrugged his shoulders and said if that's what it takes!! Or I should take metabolism speed up supplements or I could be clinically depressed. My symptoms, dry hair depression, weight gain, carpol tunnel, coldness, memory loss, constipated, tired all the time, can't sleep well aches and pains. Now going private to get blood tests checked properly

  • Hi Sweetalicious - you may get more replies if you do your own post - see above right corner - "Write a post" (orange box). It will be even better if you can post your blood test results with (ranges) in brackets, for folk to comment J :D

  • So sorry to read this Chancery, but I have read similar stories time & time again (including mine!)

    doctors just don't seem to understand we are fighting to be well and not give in to being ill!

    I don't take hubby with me anymore - he's easily chatted up by 'authority' - the tart!

    Take heart, J xx [lentil hater] you've come too far to give up now! :D

  • I know, Sparerib, you've touched on exactly the point that drives me nuts with him (one of a gazillion!) - who the HELL would do this for fun? You'd need to be demented, seriously bonkers. I think that's why I got undermined by yesterday's 'let's rehash all the same old cr*p' debacle. It's offensive. I'm doing this because I DON'T want to end up back at couch zombie with no personality, except with added pain because the meds no longer work, or with so many meds-induced autoimmune issues they have to drill into my brain and stick in a Teflon plate because - hey! - we paid no attention to really fixing this when we still could.

    But what do I know? I'm just the patient. (Bitter? Who, me?)

  • Chancery,

    That is what the forum is all about.

    Because nobody believed me for a long time and my family, although extremely supportive give each other knowing looks they think I don't see, when I have my head buried in the latest "Get Well Soon" book.

    I do believe sometimes I spend too much time researching my symptoms as we recently had a holiday away and I actually forgot some and felt so much better. However, I appreciate what you are saying because when we all feel so ill, so abandoned, so neglected and so much in fear of never feeling well again, it is a natural survival instinct to educate ourselves with the cause of our misery and try to gain some sort of control back in our lives.

    Some of these symptoms are truly terrifying and although we don't know you personally Chancery, we all share the same feelings of being totally let down by doctors and life sometimes.

    Thyroid issues and miserable symptoms make us who we are and we can't help that.


  • I hear you, Flower. About a week before I went to this appointment I actually stopped getting the email recaps of the day's posts because I just couldn't handle the sheer volume of emails and I didn't;t have enough time to do my own thing. I felt really bad about it, because I feel I owe a duty to help anyone I can in return for the help I get on here. But I kept telling myself 'Be selfish, You need to be selfish'! So that was something else that undermined my confidence; here was I, trimming down my health-related activities and yet I was being painted as a demented loon who was killing her last brain cells on the internet.

    After my first run-in with my doc, long ago, I explained to him in a letter I wrote to him (with a B12 dossier) that I needed this research because it helped me to feel less depressed, more in charge, which it absolutely does. No discussion. But he somehow forgets this. He seems to genuinely think that if you were not on the internet, or reading, you would be capering up mountains or kayaking. On what planet? I'm done after a walk to the shops.

    I'm not saying that the internet is the only thing you can do when tired, but I do it so that I can stop BEING tired. He doesn't seem to get that you are not a healthy soul indulging yourself in being sick because you enjoy it. You are a sick soul trying to get back to the healthy person you lost.

  • You do not have a duty to help anyone on this forum Chancery.

    We all do what we can, when we can and hope someone finds our advice a little bit helpful and supportive.

    I agree with us being sick souls trying to get back to the healthy person we lost.

    Lets hope it's not too long for any of us.


  • Hear, hear, Flower. X

  • We only research because we are ill. When I was fit and well I was too busy to be researching anything. I wish I had the energy to be busy again. We are all in the same boat though our journeys may be different. Keep on fighting because it's the only thing to do! You can't give up! You will miss that day, somewhere in your future, when you get up one morning and feel that little bit better!

    Hang on in there, you are not on your own!

  • Absolutely right, Sewnsew. Before I started this slow insidious decline into ill-health you would never have caught me indoors on a nice summer night. Now my sore muscles, achy joints and general fatigue plant me on the sofa whether I like it or not. And if I'm going to be stuck here I might as well get proactive in trying to change that - because my doc isn't going to bother.

  • The thing is - they won't diagnose us. They haven't the time or the skills unless we have something nice and obvious. So we have to hunt, and try to self diagnose, and then self test, and then go to the GP with the evidence and the diagnosis in hand, and it's so difficult without the background in science, so many false trails. But if I hadn't spent endless hours on the internet, I wouldn't have found my son's iron depletion, which was at a very dangerous time for his brain development, wouldn't have found the Restless Legs Syndrome, he would still be emaciated, I wouldn't have a Hashi's diagnosis, I wouldn't have fixed the gluten thing -

    You've had some important successes, Chancery.

    Until we find out what is wrong it's very hard to cut down on the hours.

    It's true we should get out more. But it's difficult to find the energy!

  • What did you find out about the restless legs syndrome Aspmama?


  • Exactly, Asp! I really, REALLY want to say that to him. I really want to yell 'I'm doing your f%**^! job for you, you moron. Be bloody grateful instead of sitting there on your high horse giving me the same ignorant speech over and over - based on nothing but your own prejudices, or your injured professional pride.

    But I don't. We think these things but we do NOT say them. But oh how I long to...

    Like you, I would still be stuck on the sofa, completely unable to function, doped up on so much anti-convulsant I literally couldn't hold a conversation for two sentences (no exaggeration), in tears because I couldn't remember the word for vegetable, or cat, or spoon. Having to talk like a crazed loon because I had to go through a bizarre ritual of saying all the words that my brain churned up trying to find the right one. Falling asleep in mid-morning, then mid-afternoon, then mid-evening and then lying awake to watch the dawn come up. No longer dreaming; hallucinating spiders everywhere, running across my floor in the darkness, having to sit with my feet up on the sofa because I was too afraid to put them down on the floor. Not being able to stand up in the shower. Not being able to shower my face without a hand over it. Being embarrassed countless times in supermarkets, in the middle of roads, because I'd come to a grinding halt, yelling out in pain. And there's more, much, much more; that's only the tip of the pre-B12 me.

    My doctors did NOTHING to help that. Zero. It was all me. So I might be a lunatic, but I am a coherent, articulate functioning lunatic. No thanks to them. (Yep, still bitter!)

  • Sending strength and a hug. Twice in my life I have suffered similar both times I was right that I was seriously ill. Some of the labels are shocking. I found as a woman I was treated as neurotic and anxious when in life I was feisty just ill. I even started believing them. If they put half as much effort into diagnosis as they did dishing out labels it would be progress. You know your own body. You know when there is something wrong. Someone on this website diagnosed my second illness 9 months before my GP who thought my symptoms were somatic! I had years of suffering for no reason. Other people with my second condition have waited 10 years plus for a diagnosis. It is shocking. I think part of the difficulty is that there is so much overlap between symptoms of different diseases so what we think is the answer might not be the right one and it is the same for the GP. The GP gets 10 minutes per patient. A couple of dead ends and it is easier for them to label you than it is to keep looking for an answer. If you have an auto immune disease, odds are high that you have another one, but it can be difficult to unravel. Even more tricky if it is something unrelated. Sometimes it is a case of eliminating options until you find what is wrong. It seems however that even good doctors give up too soon. They think they are helping you by telling you to lay off the research which is why they can appear so convincing.

    I hope that you find answers and get the support you deserve. X

  • That was very succinctly put, Sandy. I think my doc feels both threatened by the fact that I come in with things he knows nothing about, so he feels that he is on marshy ground, and by the fact that just doesn't know how to help me, past giving me drugs. His most recent bad habit is to try and intimidate me - by use of severe pessimism - in trying to make me stop decreasing my Carbamazepine. I find this very unsettling, especially as I am now getting low and the discomfort is beginning to be felt again. When I told him this he came down on me like a ton of bricks. Not helpful. Discussion would be better. Telling me not to panic, that the drug could always be increased again, but no, it's terror tactics. God knows why. I am often mystified by his behaviour and how nonsensical it is.

    Ironically, this 'you should stop for the sake of your health' is as irrational as me putting my two and twos together. He has just decided I should stop and ipso facto, I should stop. I do get doctors stopping in the pursuit of a diagnosis when it gets too complex, but mine has never started. I went in with trigeminal neuralgia and he doesn't want to hear about anything other than that. Everything else I have, from the rash, to subclinical hypothyroidism and neutropenia is irrelevant. If it's not part of a standard TN diagnosis, it doesn't exist. I call THAT bizarre.

  • remember we're only supposed to have one symptom at a time, otherwise they get confussed....

    btw - what's your vit D levels, are some symptoms of TN similar to TMJ? A friend's mum with PA was told D3 underpinned B12's efficacy - just a thought - I repeat myself continually... just in case :D

    oops just read your reply with low D3 below...

  • I know, poor souls. The really funny (or tragic) thing about us joking about this is mine's actually DOES get confused, or at least discombobulated. I always seem to be (entirely unintentionally) throwing things at him that he doesn't know (like Carbamazepine is a known thyroid disruptor) and then he's all antsy with me. I think that brings some of these bizarre overreactions on.

    But what can you do - play stupid because it makes them feel better? I only have ten bloody minutes; I don't have time to pander to egos. I do it quite enough with him as it is, trying to be diplomatic, encouraging him to feel like it's his discovery/decision/brilliant idea. But sometimes you just gotta tell them the truth - and here I am.

    I didn't know D3 had any effect on B12, but I'm not surprised. When I first got B12 injections that was one of the first surprising side effects - I found that when I woke up I didn't immediately want to roll over and die, or pray to please just let me sink back into blissful, numb sleep. I'm not saying I bounded out of bed, but hey, I could actually get up.

    After Vit D was added, and it took me a while to realise this had happened (I mean that something had changed, not that I was taking the tablets; I wasn't THAT out of it!), I actually managed to get up in the morning. I'm now getting up at around 10 am, which is frankly amazing for a woman who couldn't get out of bed before 2 - 3 pm. And I sleep. And I dream. They were ALL missing pre B12 and Vit D. Of course, I was on higher drugs previously, so that doubtless impacted on things like the dreaming (anti-convulsants stopped me dreaming like a tap had been turned off. You wouldn't believe how little you feel like you've slept when you don't dream, probably because you haven't really.) So it's probably overstating it to lay all this recovery at the door of vitamins, but they surely made a difference.

    So yeah, those nutrients were obviously badly missing and badly needed and chiefly were having psychological effects on me (maybe more accurately neurological), not physical (except for needing to pee all the time - B12 helped that one completely unexpectedly too).

    My Vit D was "insufficient" when measured, but only by one single point above "deficient". When you consider it had been supplemented by me for five months prior to that testing, it must have been severely deficient to start with. My doc, in his inimitable style, ignored the result, and I had to ask him for tablets. Ah, he's a gem...

  • "You wouldn't believe how little you feel like you've slept when you don't dream" ... I believe & can't even remember dreaming of late ..

    Nutrients are a good place to start - God knows there's many places to start, but they've earnt their place, by now.

    I find it strange -

    (only one raised-eyebrows worth - I practised so hard to raise either as a child... anyway)

    docs don't realise this... (not raised eyebrows but low VITAL minerals) one raised eyebrow is merely inquisitive - two are for real i.e "no declarations of pecuniary interests" - I wonder witch doctors (oops spelling) could say that?

    if only GPs had funding points from vitamins- now that the drug companies have bought them up? lol.

    Wait... doesn't big business buy up the opposition to dispose of them - or did I watch too much Dallas?

  • Oh, you poor thing. No dreaming is a horrible, horrible thing. As nasty as some of mine are, I missed them awfully when they went. I remember the first one I had when they came back - the COLOUR. It was so vivid and bright. I remember waking up and being confused as to whether it had really happed or not. Now, THAT'S what dreaming's' all about...

    I hope you realise I was reading your reply and sitting here playing with my eyebrows, trying to see if I could raise them individually. I was shocked to discover I can only raise them en masse, and look like an outraged rabbit. When I try to do them individually, I twitch my face like I have full-blown tic douloureux - an irony if ever there was one.

  • stoppit !

    the lure of the dream - grr... a little jealous..

    I bet you can even taste and smell...

    yet still I can raise an eyebrow to you - & us folk with a sense of humour despite all odds & beat those dandy w*****s hands down.. on the beaches... oops again :D

    - glad you're back Chance - stuff 'em! x

  • Taste, smell. Yep, I can do it all. In fact, I smell outrageously. There's nothing my spidey senses can't pull off, except sensing when doctors are idiots. (No, I lie, I can do that too.)

    But now not only are you to blame for me being caught on the couch twitching like I am having electroshock therapy, but you have now encouraged me to go into my next doctor's appointment and announce "Well, you dandy W****r, what lunacy are you going to inflict on me today?"

    Yes you did. Don't even try to deny it.

  • I deny nothing - I am the excuse x

  • Atta, Girl! Shameless and proud of it...

    P.S A danady is like a dandy, only spelt worse. I has corrected my grievous error of grammar stuff.

  • just go to bed & dream... (Ise assertive or wot! lol)

    didn't the Baird say similar? I'll quote anyway as I'm too tired to argue.... ever... so a lullaby...

    rest assured we know you're not a nutter - I can spidey-spot one, and my spidey sense hasn't spotted one yet...

    may need 2 AAA battries maybe... but that doesn't count...

  • Oh you poet, you. Night-night. X

  • I lost 98% of my dreams for many years - probably close to 20 years I think. All I ever got during that time was the very occasional, very brief, terrifying nightmare. And there wasn't any variety in the subject matter at all.

    In late 2013 I had very high reverse T3. I started taking T3 only and discovered that I was remarkably insensitive to it. I ended up taking lots of T3 just for a few weeks.

    I remember the shock I got when I actually started dreaming a lot during this time. And not only did I dream, but they were new and interesting (to me, anyway), even the nightmarish ones. I remember the dreams were a bit more complex and longer than I was used to as well.

    I take much more modest doses of T3 now, but I still have far more dreams than I ever used to. And although they aren't quite as inventive as they were on high dose T3, I still appreciate the variety.

  • Oh HB, twenty YEARS? How did you cope? Didn't you feel like you were living on a constant low dose of coffee or something? I can't imagine that was very refreshing. Didn't it also make you more confused and less settled? I think dreams play an enormously important part in helping us sort out stuff from our day. Without them it's like we're not cleaning out the filing cabinet, moving forwards. You know what I'm trying to say. Without them I would think it would be like you were stagnating, stuck, floundering and kind of helpless.

    Or is that just me?

    I know I found it very hard. I had tremendous difficulty finding myself (as in recognising who I was) when I was medicated to the eyeballs, and I used to just cry sometimes for the loss of myself. If you read my journal entries from the time I was on Lamotrigine, for example, which did terrible things to my head, I actually sound half-crazed, like a different person. The proof that that was true is that I didn't notice it when it was happening to me. It literally sent me a little mad; as well as crucifying me with pain for six weeks (migraines).

    But those are all powerful drugs, with known mental and physical effects - after all, they slow your brain activity down and stop epileptic seizures, so powerful mojo, but you had your problems just from thyroid imbalance? That's scary.

  • It's impossible to separate out what effects and benefits that I'm getting are caused by me dreaming again, and what effects are coming from being on T3. (I'm talking in terms of my mental health, not my physical health.)

    I do feel more balanced and less depressed. I also feel more in control of myself and my thoughts when I'm stressed. The headless chicken behaviour tends not to appear so often as it used to.

    I think thyroid problems were only partly responsible for my lack of dreaming. I had a hysterectomy at quite a young age (37) and was unable to tolerate HRT. I was in pain a lot both before and after, and that makes nightmares more likely.

    Another thing... knowing what I know now, I think I've had high cortisol most of my life. And I've read that high cortisol reduces or stops dreaming. I don't know if low cortisol has the same effect.

    I've felt I was mad or weird for large parts of my life, at least when I was stressed or depressed. It is nice to feel sane now, and I credit the T3 with that. :)

  • I am jolly glad to hear you are both sane and can dream with the best of 'em - that way bliss lies.

    I'm not quite sure I'll ever attain full sanity, but I've damn well got the dreaming back - yay!

  • Blimey, Chancery, from reading what you have written makes me so happy that I didn't start taking Lamotrigine (you gave me some very useful advice about it when I posted a question about it ages ago).

  • You didn't? Oh, good, wise girl. I feel I have not lived in vain now!

    Seriously, I shouldn't say that, since no two people are alike and Lamotrigine works well for many people, I'm sure. But God, that drug nearly killed me....

  • Ha ha, you can have a gold star too, if you like.

  • Hell, yeah. My three-year-old self says bring it on!

  • The one and only time I took my ex-husband to the doctors with me, the doctor totally ignored me and talked to him. He asked my ex if I was 'hysterical, neurotic'. My ex said 'yes!' and they both had a jolly good laugh as if I wasn't even in the room. You see a bit why he's my ex!!!

    I Don't believe in hypocondria. If people think they're ill, it's because they are ill and just looking for help. 'Hypocondria' was invented by doctors who didn't have the skills or knowledge to diagnose them. Nobody wants to be ill, despite what they think, but they do want to be well, and that's why they go to the doctor. It is desperately sad that doctors try to cover their ignorance by putting the blame on the patient.

    So, if you know that you are 'subclinical hypo' - whatever that means! - why Don't you just take the bull by the horns and self-treat? At least that way you would know if your problem is thyroid or not by whether thyroid hormone replacement helps you with your symptoms. If it doesn't, no harm done. At least you would know.

    Have the courage of your convictions, Chancery! You know your body, you have to live with it - and have lived with it for x number of years. Go with your gut feeling, and Don't let the nay-sayers get the upper hand!

  • I think you were a model of restraint, GG, in that nightmare scenario. I don't know how you didn't deck them both!

    Unfortunately my gut feeling has been a bit unseated, which is the problem. I don't know where I stand now, or what to do next. I can sort of see his point, and I agree with him; it's not good to become health obsessed, but contrary to what both he and my partner seem to think, I'm actually not health obsessed. I'm answer obsessed - a totally different thing!

    Yeah, I'm kidding, but also not. Being obsessed with answers is what got me some. I'm afraid I find it very hard to respect my doc's approach: never ask about symptoms, treat one symptom at a time, never ask for more information, discourage experimentation or research. Doesn't strike me as good medicine, and I think that's where we are coming adrift. We have fundamentally different philosophies. He runs his surgery like a McDonald's drive-thru - if it's not on the menu, you ain't getting it!

    And don't worry, if I think hypothyroidism is causing me problems (and I'm sure it probably is), I will ask for treatment. But until I can get to the lowest place possible with this Carbamazepine, I can't be sure of anything. Just got to keep plugging away at it and hope for the best that all will become clear....

  • Chancery

    I don't quite know where to start this, there are so many things I want to say. But maybe I’ll start with, yes you are maddened and no you’re not mad. First of all, really mad people don’t question their sanity. Secondly, anyone can be driven to being maddened by the intractability of the medical profession and individuals belonging to it who have become warped into believing their own omnipotence. The despair you feel is so utterly normal that if you did not feel it you may well be lipping real mental health problems, like dissociation to mention but one.

    The symptoms you feel are not in your head – you know that. They are not caused by what is going on in your head either; you know that too. But if you keep on telling someone that the world is flat, and those around them collude either by assuring them it is or by saying nothing, that person will begin to doubt that the earth is round. After all, what real proof do they have? The photos from spaceships? Could be a grand deception. The view of the horizon from a plane? An optical illusion. The slight curve of the horizon from the beach? They are seeing what they want to see.

    Which brings me on to David Rosenhan’s experiment. He sent a bunch of normal, healthy individuals, including himself, to psychiatric hospitals to report they were hearing voices that were indistinct but said what sounded like, “hollow”, “empty” or “thud”. Every one of them was admitted to hospital under the diagnosis of having a mental illness – mostly schizophrenia with a few manic depressions thrown in. Not one member of the medical staff recognised them as imposters. In fact, everything that the ‘pseudopatients’, as Rosenhan called them, did was perceived in the light of their “mental illness”. Their note taking was recorded by one nurse as ‘writing behaviour’ :O and deemed it pathological. And all their personal histories were recorded in the patient notes in such a way as to substantiate the diagnosis of schizophrenia. And – they were not allowed out until they had come to ‘agree’ with the doctors that they were indeed mad. One person could not get out for 52 days!

    Did anyone suss that these pseudopatients were not mentally ill? Yes. Nearly one third of the other patients did. Was it tough love? The hell it was. And hell it was.

    So, NO, you are not mad, going mad or behaving mad. But what a blow indeed from your partner. I can only imagine the pain that inflicted upon you – especially if he is your only source of support. I could go on about how he must be worried about your ‘obsessing’ (see how easy it is to label?) and how he cannot begin to comprehend what it is like to be ill all the sod*** time, or how introspective we become because such illness is as in-your-face as a raging toothache and that we spend huge amounts of time worrying about our health because THERE IS NONE ELSE TO HELP US, but that won’t help you with him and the bodyblow he delivered; I guess it must have felt like a betrayal.

    My other half is a ‘diplomat’ (a label that means someone who cannot manage confrontation: a nice label, actually for a nice but sometimes infuriating man) and it has taken years of his being married to a feisty, courageous woman to heat-up his ability to defend, as well as tone down my need to fight, but there has been a lot of crap gone under that bridge to get to that point! So my advice would be to cut him some of the usual slack you cut him but allow yourself to be annoyed with him rather than the energy from the anger turning inwards and fuelling dejection.

    What I will say is that becoming desperate will compound all the issues. You will use up precious energy you need to heal; it will disrupt your psychoneuroendocrinological systems – your body will ‘hear’ reinforcements that you are ill, it will spread the news and your immune system will go into overdrive to search out – and kill – the enemy (anything from food to fluid and you) and your hormones – not just the ones dealing with sex drive (that will probably go because of your ‘neurosis’ not because he didn’t stand up for you … labelling again! :x ) will go walkabout. You will then join the ranks of the neurotic, or vagina people, in the eyes of the penis people (or psuedopenis people – female doctors!); I can label with the best of them. ;)

    So your idea of standing back for a bit might not be a bad idea. Just be ill. Lie back and think of Ingerland. Feel what your body is saying; spend time with you, accept you’re not well and don’t go head-on with it trying to get better. Come at it a bit more gently. There will be a lot of sound advice and suggestions on here – feel your way through them as well as think your way through them. Catch the monkey, slowly, slowly … I’m learning that I need to learn to listen to the wisdom in my body, to give in a bit and try to hear what it is trying to tell me. Sounds a bit woowoo, but if you slow down a little, accept you feel like sh***, you will be more able to gently work through what you might need to do. Perhaps starting with finding a doctor who is not such an arrogant needlestick!

    Sending you love, strength and peace. x

  • Thank you, Schenks, and what a fascinating experiment. I admire them greatly for doing it. I wouldn't willingly sign myself into an asylum, even on a voluntary basis. It's the stuff of mythology that people get stuck in there forever! But yes, absolutely, it shows you how everything in medicine can conform to an ideology whether it's based in truth or not.

    I actually discovered a great expression for this the other day: "The Semmelweis Reflex - any erroneous scientific theory or position irrationally held within the scientific community in the clear face of existing contrary evidence". My doc conforms to this to the letter: 'B12 can't have affected your TN, it's a placebo/coincidence. You have no autoimmune issue because your rash could be Pityriasis rosea. You don't have anaemia because you don't have iron deficiency anaemia (yeah, eh what? was my response too). We have no proof you have any demyelination (I have bloody trigeminal neuralgia, what more proof would you like?)'

    I could go on but his greatest hits would take all day. And I agree with you absolutely about absorbing his negativity. This is one of my biggest fears. He went from encouraging me to drop Carbamazepine medication to saying he didn't;t think it was a good idea to, this visit, being downright hostile about it and saying 'The pain will come back, you shouldn't do it'. This is founded in nothing substantial, just a sudden terror on his part. But it is very undermining, because when you get to the under 400mg mark (lowest effective dose), as I am currently, you know you are in dangerous waters, so automatically you start monitoring every tweak and twinge. Focus, focus, focus. When your self-confidence goes with this kind of negative reinforcement, you suddenly don't want to push your luck, because TN pain is Satan in nerve form. This withdrawal is hard enough to deal with, to use the vernacular 'I really don't need this sh*t'.

    But ho hum. What I am doing now is not thinking about it. Counterintuitive, I know, but I feel that I should do this by my heart and not what is the 'intelligent' thing to do. I've hung onto him and hung onto him because he gave me the B12 injections when lots of docs just would NOT have done it. He hasn't refused me a test yet. Obstructed them and disapproved, yes, but refused, no, so he does have plus points. I know I am well off in many ways, and that's just the problem. Because I know I have had some good fortune here, I am hanging on when it may be time to let go. I just don't know. So I'm hoping all will become clear if I am just Zen enough!

  • Semmelweiss was my hero - never heard of the Semmelweiss reflex until now! And not thinking about 'it' sounds tickety boo to me, right now. Good luck be with you . Ommmmm ....

  • Yeah, Semmelweis was a very tragic hero, poor man. I wish I could go back in time and tell him they named something good after him and he was vindicated, finally, although not enough, in my opinion. I think we ought to declare a national Semmelweis day here on the thyroid forum. Honour the man for his suffering.

  • Years ago I asked my then doctor if I was a hypochondriac - he said NO just unlucky. I thought your post was amazing. Writing good, descriptions brilliant. I was emotionally connected to your experience - which at times mirrored mine. It would be good if you felt able to give your doctor a copy, say you were wondering about seeing if the press or magazine publishers might be interested. Only an idea - you have a lot to cope with. Be kind to your self. We care.

  • Thank you, Rosy, that's very kind of you to say so. I would never let him see that though; it would just make him feel attacked, probably for good reason! But yes, I am considering writing to him, but am unsure whether a) it would make any lasting impression and b) whether it is worth the effort at this stage. I feel more that it's time to move on and try a different doctor. Now all I need is to stop being a cowardly lion and take the plunge!

  • Men are from Mars ... and won't even read an instruction manual when a few minutes reading could save them hours in trying to fix something. They're often 'do-ers, not thinkers' so it's perhaps not surprising they can't understand us spending hours researching the internet trying to fix ourselves.

    A good question for your partner Chancery, or even your GP come to that, could be "what would you do in my position?".

    And if you were to ask me that question, I'd say change your GP!

    Acceptance of our unwell state is the first step to healing, and questioning that and your sanity is taking you in the opposite direction. There are enough of us desperate people on this forum for you to know without any doubt that your symptoms are real and answers need to be found. Please just be sure to keep us posted any time you find one.

    On another topic Chancery, I read your profile about being vegetarian, do you know what blood group you are? And your partner? My partner's O and doesn't do well without meat (although he'd like to) and I'm A and don't do well with it.

    Healing hugs, you've come a long way and things will get better.

  • Thank you, Dina, and you may have a point about my doc being a 'doer'. He likes to run up mountains for recreation and I always feel that he wants to shout at me to go clean out the shed. He obviously thinks I sit in a darkened room, like Gollum, muttering over my arcane knowledge. But I don't. Very far from it. I question EVERYTHING. I reject most of it as irrelevant. I know when things don't apply to me and I watch myself like a hawk for trying to make things fit. I only ever take him stuff I believe is a genuinely good fit, or worth investigating. That's all I ever ask for - investigation. I've told him why. But he always says 'There will be no end to these tests'. To which I only just realised yesterday, that is utter BS. Of course there will be an end to them.

    For example, the ANA test which I had done today - if that comes back negative, I will NOT pursue autoimmune or lupus or Sjogren's as a diagnosis. While the test has a bad habit of turning in false positives, false negatives are rarer. Therefore, if I get a resounding negative, then I reckon autoimmune is probably a no. That may not be true, but I'm willing to let it go. When I finally got a proper coeliac test from him (another long, hard fight) and it was negative, I let that go (although I did move to non-coeliac gluten sensitivity, I must confess!) But the point is, I don't hang on. If I get a definitive result, I let go, so I resent that being trotted out at me as if I am just cruising for the next weird tests to have. I actually dread asking him for tests - that's how intimidated I ma by his disapproval.

    But no, to answer your other question, I have no idea what blood group I am. I've never had it tested. My partner is some weird rare blood group, but I cannot for the life of me remember what it is now, something like Ab negative. (That's probably neither weird nor rare, sorry!) And I am no longer a vegetarian, at all. After my B12 discovery, and finding out I was also very badly Vit D deficient, I decided enough was enough, I was eating EVERYTHING in future. For which I say daily prayers to all the poor animals that give their lives up for me. I'm sure it's little comfort to them that I really do appreciate it.

  • Well, what a day you had there! I know where you're coming from, really. I was utterly abandoned by the medical profession, the only script I got out of anyone was some laxatives!

    Well they were wrong, all of them, & I was right. I am now completely restored to health treating myself with NDT I buy myself. If I never have to see another doctor in my life it will be too soon.

    Hope things improve for you xx

  • Thank you, Harry. I know exactly how you feel. I had to go in again today to have the blood tests and the phlebotomist was late, so I was stuck in the waiting room and my doc seemed to be everywhere. I couldn't even look at him. I was panicking that I might have to speak to him and I thought, 'I can't even bear to look at his fat ugly face. If I have to talk to him I'll punch him.' As you can tell, still a little mad there, given that he's neither fat nor ugly.

    And I am very glad you managed to save your own health. More power to you. You give me faith that you don't need these mothers - if you'll forgive my French - to get through it. X

  • You have just joined a very large club... a club that spans oceans (I am in the US), cultures and genders and socio-economic strata. The commonality? A thyroid disorder that goes unaddressed and unacknowledged.

    You aren't nuts. We have an inborn sense when something is wrong with our bodies. We continue to throw ourselves against an unyielding wall of medical ignorance, willful indifference and/or criminal compliance with a medical 'authority' that chooses to continue to say this condition doesn't exist.... with rare exceptions.

    First... I would go private.... try to find a doctor who is at least sympathetic and who is willing to run your tests. At least test for B 12, iron, all the thyroid tests and take a 24 hr cortisol saliva test. You are swinging at windmills until you have concrete test results to see where you are at and what you have to start addressing. Be patient with yourself. Know that many of us have to take the bull by the horns (so to speak) and treat ourselves. Know that many conditions have the very same symptoms... much overlapping. But it is imperative that you know exactly what your problems are.

    Because of the similarity in symptoms, internet searches could have you chasing a lot wild geese. Research??? Absolutely. But nail down exactly what your problems are so you can zero in on those conditions... start addressing them. Fretting about your partner's lack of support is wasted emotion. You are a rock... you need no one except a doc who will order your tests for you. You have intelligence and a working brain (in spite of the brain fog so many thyroid sufferers have) and can use it. Don't get side tracked with the emotion. Be selfish... put yourself first for now. Let nothing deter you in your quest. You don't have the emotion or the time to waste on what others think of you, right?

    Once you know what your are up against (and have eliminated some others) there are terrific folks on this list ready and able to help you interpret and apply remedies. It has taken you a long time to get sick. Be patient and be willing to put in the time and effort it will take to start getting well. I know you can do it.

    By the way, 200 mcg of selenium .. no more than that ..... is very protective of the thyroid as is a little iodine (a drop of lugols for instance).

  • Thank you, Phoenix. I have often discussed with people the fact that the US seems to have the same problems, despite private health care, and couldn't understand this until I grasped your insurance system. That said, there is obviously still something amiss in the teaching or practice of medicine itself, because even people paying for themselves still seem to get bad or indifferent treatment. Of course you do have the big advantage of being able to 'fire' your doctors (I love the idea of that!)

    I'm afraid private health care's not an option for me though. I simply don't have the money. I wish I did. If I could afford it, I'd order all my own blood tests and doctor's permissions be damned!

    I have actually had a lot of stuff tested (like B12 and cortisol) so I am fairly up to speed on those. I do test what I can, within NHS limits. Believe it or not, thyroid isn't really my main or biggest problem. That's trigeminal neuralgia. I don't know what caused mine and I'm trying to get even a working theory on what went wrong. It's partly this that drives my doc nuts. TN is an incurable condition. In practice, this means they don't know what causes it so take your pills and go away. The trouble is, the pills are awful, arguably with more unpleasant symptoms than the TN itself, so I' not keen on having to take more and more of those, and be in more and more pain as my condition deteriorates. I also have Alzheimer's in the family, and I don't want to follow that path, given that my brain is already showing signs of degeneration. That's why this is so important to me.

    I discovered my hypothyroidism by 'chance' (I asked to be tested) and it's just one of the many things my doc is ignoring and considers irrelevant. I believe there is a bigger (autoimmune) picture; he does not. Essentially this is what we are at loggerheads over. Although arguably we are really at loggerheads over the fact that he ignores every single symptom I have and considers me one of the 'worried well'. I'm not sure what I'd have to have to be sick in his eyes - cancer would probably be an irrelevance, just something needing a different set of tablets.

    I do indeed work constantly with a process of elimination. I have complications, in that my drugs probably cause some of my symptoms because I seem to be having a reaction (or three!) to them, but like you say, overlapping is a serious problem, especially when your doc digs his heels in about every SINGLE test - bless him.

    But it was ever thus. I am taking deep breaths and trying NOT to be sensible about this. I'm just letting it flow through me and out, and hoping that at the end of the day I'll know what to do. X

  • Wow, Chancery. TN is a tough diagnosis and a tough illness. How often do you have attacks? I guess you have been thoroughly checked out by a neurologist? I betcha the TN looms large with your doctors, huh? A handy excuse to ignore everything else.

  • I had it non-stop for ten months, although the shocks were under control quite quickly, but I had a lot of 'background pain' that was constant. Right now, I am in a 'remission', but I am still on drugs (as well as having B12 injections, which is what controlled my pain and gave me this remission), albeit a much lower dose of them. I am trying to get off them, but seem to have hit a bit of a wall at 300mg. Still, it beats the combined 1200mg I was on before!

    If by thoroughly checked by a neurologist you mean asked a half dozen questions then given an MRI (all clear) then yep, that would be me dealt with. I haven't seen one since. Absolutely no point, since drugs is it.

    But you are absolutely right, my doc considers TN my only diagnosis, nothing else relevant. Handy, since there is nothing else he needs to do for TN, other than give me drugs.

  • Hello Chancery, what a discussion you've generated!

    Have you tried having massage to try and relax? Aromatherapy/reflexology/reiki are all lovely to receive as well. I am trained in massage, aromatherapy and reiki and although I don't think that they necessarily 'cure' anything they can be very therapeutic and help to aid sleep and relaxation. I recall reading that patients who receive massage regularly require fewer painkillers than those who don't. An 'alternative' therapy, such as Energy Work can sometimes allow a release of pent-up emotions, which in my book is a good thing. I and probably other massage therapists can connect with some clients and release their sorrow and sickness. (This can happen to me and I am the recipient of vomiting and fainting, among other things - I think that taking on morning sickness was my most bizarre.)

    Best wishes

  • A very nice suggestion, Penny, thank you. I wish you were near me and I could give you a test run. I promise I wouldn't inflict vomiting on you!

    Truthfully, all joking aside, I find massage a tricky one. Sometimes it's great and sometimes it sets my teeth on edge. Sometimes it also hurts. My skin sometimes seems to suffer from hypersensitivity and I don't like to be touched. Part of my 'adult onset autism' as I call it. I don't know what causes it, but I did have a long discussion with people on the B12 deficiency forum about it (as noise sensitivity) and it was more common than I realised.

    I don't know if my medication causes it, or it's something more physiological and part of an underlying problem, but yes, massage IS a good idea, in spite of my occasional horror at the thought, so I'll rope in my other half and try some. It can be his punishment for letting me down when I needed him most. I'll tell him you suggested it, so if your ears start burning you'll know that at least I am having a relaxing time!

  • Oh, poor you, Chancery. We need the support of our families, I do not know how I would deal with my husband dissing me like your partner - we sort of expect it from doctors, but not our loved ones.

    I am as guilty as you for reading and researching too much, although I have slowed down a lot as many of my problems have now been diagnosed and/or dealt with, or still a work-in-progress. I have been proved right with most of my health issues - they were not "in my head", and the Pain Clinic suggestion and offer of anti-depressants were not the answer (both refused). I do feel incredibly let down by doctors, because their "care" was very lacking. Funny how it is all taken a little more seriously when I have been proved right.

    I had to make an effort to stop discussing everything I was reading with my husband though - he was interested to a degree, but even I could sense his eyes glazing over.

  • Ah, he didn't mean it, Beans, but I haven't forgiven him for it - yet. He'll have to earn that. But he has been most contrite and has apologised wholeheartedly, without excuse or self-justification - a great rarity for him! Clutter was right, up above, when she said he was manoeuvred into a trap and fell for it. The doc was doing good old divide and rule, but nevertheless that doesn't give him a free pass. He needed to step up to the plate and he let me down.

    And I know what you mean about the glazing over. Mine's does it all the time. That said, he does listen to all my endless theorizing, without complaint, so he deserves some Brownie points for that!

    I am really glad to hear you have been proved right about your health problems. I love to see someone get vindication. I just wish we didn't pay such an emotional, and sometimes physical, price for it.

  • What is still intensely irritating though is that, despite being proved right that I am "properly unwell" (that is to say, it isn't just all in my head) - I still have to bang my head on that brick wall when I start having anything "new".

    I always feel like the doctor must think, "oh no, not you again, what's wrong with you this time?" Every time, it has eventually been proved that there is another illness or a real problem that needs a specialist, but I end up feeling that I have used up my NHS quota time and should stop collecting any more diseases. I reckon my doctors think I magic up new problems just to enhance my social life.

    I wonder if the doctors actually believe we should only be allowed to have one illness, and that having any more means that you aren't really unwell. Perhaps we should all stop being so greedy and share nicely :)

  • Oh, I SO feel you right now, if that doesn't sound completely pervy! Seriously, I know exactly how you feel. I'm the same. Every time I go in with the new, updated and revised theory, needing a new test or two to see if it holds water, I just KNOW he is going to give me 'the face' and the barely concealed impatience.

    But the fact is this ISN'T new, this is the same old, same old. All that's new is my thinking has moved on because some old stuff has been chucked and new stuff added in in light of new info. But all he sees is more and more irrelevant tests, more and more bizarre ideas. Bu they're not bizarre; they're well thought out. They have a point, a progression, a logic. I have no other way of testing them. He's it, and supposedly that's what he's there for. But he so isn't.

    I swear to God that if we were to go on a quest to Middle Earth to wrest the ring from Gollum, we'd have an easier time. Oh to be living in a fantasy world where quests weren't policed by doctors who think we do this for entertainment...

  • I agree with Dina7, men are from mars and tend to be doers. Following that has anyone had more luck with a female gp/endo?

    My hubby also thinks I do too much research, he thinks it can only make things worse. I try explaining that knowledge is power and that if I felt ok I wouldn't try to find out as much as I can. At my last appt the endo jokingly said to hubby "with these blood results she must be running round the house doing housework 5 times a day?" (yes he did actually say that!!) Hubby replied or rather snorted "hardly!" My poor house is also suffering since my TT and hubby has taken up vacuuming ;-) However, I'm not sure whether he should come to my next appt though as think all he wants to hear is that all's ok prob as men like an easy life...

    Hopefully we will all be sorted out at some point, preferably sooner than later before our dodgy thyroid levels have caused too much damage x

  • Aromatherapy is very gentle and the movements of the therapist's hands are more stroking than massage; this might be better, or worse, for you.

    I understand about massage as with 'fibromyalgia' massages could be torture for me. Now that I am treated and take T3 this is much less of an issue. There are massage therapists and massage therapists. Using hot stones for massage can be lovely. Before I trained in hot stones I thought that they would be like, well...stones. Actually they feel smooth and soft - and warm.

    Reiki is not hands-on, or need not be. The therapist holds their hands above the body. I have difficulty with the science of reiki, in that there isn't much evidence and what there is is generally very negative. (At the moment I'm reading about biophotons.) Having said all that, when I have had treatments I have dropped into a wonderful 'non-being' state where I know where I am, am not asleep, but am off somewhere else. I treat myself every day and have been feeling the benefit. Lack of scientific evidence would also be the case with my feeling the emotions in a client's body, but I know that I do. I always think that if it works, it works and maybe that is enough.

    I was reading your profile notes - what a journey! I was brought up very poor but always had lots of fresh food. We had a dairy farm so were very lucky to be able to grow vegetables, have free-range eggs and loads of unpasteurised milk and butter. Mum baked at least four loaves of bread every day for the five of us. As children we were always eating but were slim and full of energy. Those were the days. I am still in the habit of eating cheaply and aim for about £2 per meal if I can. This requires careful picking-up of bargains, which are harder to find now. (I never buy anything other than free-range chicken.)

    I think that you did a great job just staying alive with your history and a vegan diet!

    Your many difficulties haven't affected your ability to type, Chancery. :-)

    Best wishes

  • Thank you, Penny. I know you're right, and I know as part of learning to take care of myself I really ought to push outside my comfort zone and try something like massage - any of them would be a challenge to me. But I'm not good at this. Taking care of myself means eating a chocolate ice lolly. It's probably why I've ended up here in the first place.

    But it's one thing to be able to see your own failings, as regards taking care of yourself like an adult, and quite another to break the bad habits and try something new. Plus, of course, I have always been blighted by poverty. Masseurs don't come cheap! Because of the career path I chose, I never had much/any money and food and self-care suffered under that too.

    Ah, as you sow, so shall you reap, indeed. Trouble is, when you're young you think you are indestructible.

    But I do genuinely thank you for your advice. I like that you consider the scientific evidence for these procedures - it makes me trust them more (I'm a big sceptic!) I've known for a long time that I need to at least try practices like these; it's just breaching that barrier of 'I don't do that nonsense' to get to the other side.

  • Talking about self help - you could try yoga - there are loads of helpful videos out there. The yogis of thousands of years ago knew a thing or two about health. Each chakra happens to be just where there is an endocrine gland. Without the endocrine system we would be dead in the water - a system that has not changed one iota or evolved since we stood up on two legs and walked out of Africa and turned left. A system that cannot cope as it did. Our brains have evolved - but not the endocrine system....

    Each asana stimulates a different chakra and at the end of a practice the body is in balance and a healing has taken place. I have been teaching for over three years and studying from books for many more - the change in people is quite unbelievable. No equipment required - no expense - just finding something that suits. Anyone can lie down on the floor and roll around - and that is how you start....with baby rolls. We all once did them in our cots - it's just a case of finding the flexible baby in us again :-) I had back surgery in 2007 for stenosis and was back on the mat within three months. Yoga gives you a belief and a confidence in your own body. Meeting challenges on the mat is a lesson for life - one on how to meet the challenges in everyday life. Taking a deep breath and having a focus takes you deeper into an asana. How often have we heard the saying - take a deep breath - when there is a problem.

    People do yoga for many reasons - for me it is definitely one bit of the healing puzzle. Also if you cannot raise yourself from a chair and go to the loo - wonderful Care Homes beckon !! - no thank you !!

    I have numbness in my legs and feet and big balance problems due to the spinal operation/B12 ataxia/Hashimotos - but I do not take one pain killer. I also had the TFL opened and pinned back in the same year so I could walk up inclines - done here in Crete - yikes ! Again back on the mat within 3 months. So for me yoga is my saviour. As is often said on this forum - we are of course all different.

    The involuntary breath that happens automatically comes from the old part of the brain - the medulla oblongata - but the conscious breathing of yoga oxygenates the mid and fore brain - responsible for so much. It's an interesting approach to health and one worth looking into......

    PS I could not afford to train as a teacher so I started with a skill sharing six week course where people were happy to learn what I had learnt from part of the Arts Group here in Crete. The rest is history and I now have three classes a week !

  • Yoga has always appealed because I love stretching (and dance) but I also hate the idea because I hate doing formal exercises. I'm a bit of an Isadora Duncan - it's all freestyle for me! But yes, I seriously need to do some stretching and toning, and I've been needing it for years.

    I just recently 'read' a book out the library (unfortunately didn't get as much of it read as I would have liked) called The Obesity Paradox and it was a big wake-up call for me. It's about the fact that you can be fit and fat and that obesity doesn't necessarily equate with ill-health. Because they are always banging on about how bad for you obesity is, I tend to obsess over my weight (me and the rest of the Western world) and forget that fitness is actually more important in the health stakes. So I've been thinking about it a lot recently. Haven't decided anything, mind you, but I'm at least thinking!

  • Nothing formal about yoga - give it a whirl ! Your body - your mind :-) Just doing some breathing exercises could be very helpful.....

    I didn't realise you were concerned about your weight. Doesn't this point to yet another thyroid symptom ?

  • Oh yes, I am sorry to say weight is my Armageddon. I am not obese, 'only' overweight, but I did sneak into obesity, just once, a few years ago (just before gallstone disaster struck). Because I have dieted on and off since I was 14 (I, sadly, wasn't overweight then), I have systematically ruined my metabolism and now, at 58, it's hard to make it work for me any more.

    I read a lot on food & nutrition and the latest research on obesity and addiction in the hopes of finding some truths that I can help myself with. But by now my brain is so terrified of food it's hard to make any headway at all.

    I confess I am loath to blame my weight issues on thyroid because they have been with me a long time, but I suppose low thyroid may have been with me a long time too. Who knows?

  • Dieting can effect the thyroid. The very ancient mechanism within the thyroid function is for the metabolism to slow down due to low output of the thyroid when there is little or no food available. When humans were evolving - living in caves and being nomadic - they ate only when food was available. So when the thyroid senses little food it shuts/slows down to conserve energy - hence why people plateau with weight loss a little way into a restricted diet.

    Not a question of blame - the body speaks volumes :-)

  • I'm sure my last (enforced) diet did do damage to my thyroid, and just about everything else too, but unfortunately I don't know how to undo that. I've stopped dieting, for good, but it's not so easy to undo the psychological problems around many years of food 'issues'. I shall just soldier on. But one of the many things I am currently changing is my activity levels so yoga (or at least stretching) is definitely on the table...

  • ...much of which you can do in bed before getting up !

  • Really? Do enlighten me....

  • ....many of the stretches and breathing asanas that is....

  • I have no idea what that is. I need a book, obviously! I'll check out my library.

  • Thank you. I shall now be asana-ed up!

  • Hi Chancery. I've only just resd this and I had to respond since I've always described myself as more Isadora Duncan than the corps de ballet.

    Have you considered Tai Chi? I've recently started since it is supposed to be good for balance problems. (I've had dizzyness and vertigo problems for some time.) However it is a good workout which doesn't leave you out of breath. I'm enjoying it.

  • "More Isadora Duncan than the corps de ballet" - I like that. Unfortunately, I am REALLY Isadora and hate organised group activities. I think it's partly my 'adult onset autism' and partly I hate having to learn stuff and get it right, in case I fail. Plus I do have the exhaustion problem. I can only go so many hours a day then collapse sets in with a vengeance!

    Actually, I think I'm just lazy and making excuses here. I am at the very least going to instigate some daily stretching. Let that inner Isadora out - but definitely nice to meet another free sprit. Sometimes I feel like the only one!

    P.S. Tai Chi is a lovely suggestion though. It always looks really nice in films when they're all doing it in the lovely sunny park (that's the only place you ever seem to see it!)

  • Chancery - poor you, we can all empathise and your brilliant style of writing really does mean that we share your thoughts and experiences in a vivid way.

    Who wouldn't want to enjoy good health, that seems to go right over the heads of those who've failed us so spectacularly with their incompetence and disinterest.

    Funnily enough my daughter berated me for reading thyroid forums and told me that I should stop being obsessive about my health. She wasn't looking for a reply either.

    It's hurtful though, the NHS would love us all to be compliant with whatever nonsense our GPs or consultants come up with. Why should we accept that this is our lot, what's wrong with having an open and enquiring mind?

    Hang in there Chancery and take care of yourself.

  • Thanks, Cinnamon. And your choice of word - compliant - is exactly the right one. I think that's probably the crux here. In order to make medicine 'work' they need us all to be compliant and not make waves. Your condition must fit into a ten minute appointment. You mustn't have anything more complicated wrong with you. A single specialist must be able to deal with your complaint. You should be happy to remove the symptom and not worry about the cause. Prevention is for posters, not people.

    Yep, compliant is what we are....

  • Chancery, some therapists do pro bono work. My tutor, based in Windsor, does treat people and charge on their ability to pay. Obviously not everyone otherwise she wouldn't be able to pay the bills. You may be able to find a college where they train therapists and need models for their training. When I was doing my aromatherapy I treated volunteers free of charge.

  • Thanks for the tip, Penny. That would never have occurred to me; that training colleges might need guinea pigs. Might be a good way to break myself in to the idea - you know, 'it's not costing you anything so what do you have to lose?' ideology. Sometimes when you are trying to get yourself to try new behaviours, you've got to treat yourself like a four-year-old and plan in advance for all the resistance you are going to give yourself! Always a good idea to pre-empt all the excuses.

    I'll have a look around all my local colleges and see if they might be a good source of freebies. Thanks again; I'm trying currently to do things I've never done before to help shake up my thinking, so this has been good for me. X

  • Hi Chancery, as with all the other comments I too have felt as you do now, told i research too much, husband taking the docs side, not believed etc etc. I didn't listen to any of it and carried on regardless, OK I had my doubts but my little voice inside that was telling me something wasn't right was louder and wouldn't go away.

    I am now being treated and feel a little vindicated. I want to say don't give up researching, knowledge IS power. And to start you back on your way here are a couple of links. ;-),T...

    Trigeminal neuralgia and facial palsy have been reported in patients with hypothyroidism but so rarely that the association may have been due to chance. Genis and colleagues reported 1 case of a patient with hemifacial spasm that resolved with thyroid replacement, reappeared when treatment was stopped, and disappeared again when treatment was resumed (Genis et al 1993). According to one group of investigators, Hashimoto thyroiditis is common among patients with benign paroxysmal positional vertigo, but the association is independent of thyroid status (Papi et al 2010).

    Wishing you success

  • Hi Flatfeet. Many thanks for the links. That last one was particularly useful. I wrote to John Koff of the US Trigeminal Neuralgia Association the other day and told him about the odd fact that out of all the forums I belong to, the thyroid forum has by far the highest incidence of people with trigeminal neuralgia. How very strange to see it echoed here in this paper. Maybe not a coincidence after all then!

    Unfortunately the first link you gave me isn't working properly. I think you may have left part of it behind? Could you give me it again, or tell me what it is so I can look it up? Thanks!

    P.S Think I just managed to find it. Great, great link – can't thank you enough. I'm going to go through all of these and see what I can find. My doc has done such a job on me over the months, undermining my self-belief, I had decided just to give up, but this has made me wonder if I'm not right after all. Thanks again. X

  • No problem, I know how how easy it is to be swayed but you know yourself the best, be kind yourself. Be loyal and listen to and that voice inside.

  • Sorry the link didn't work, if you need to find it again try this;

  • Yeah, that's the one I got, eventually! Thanks. But I'm having a problem when I click on the links to try and read more. Do you know how to actually access the forum links when the pop-up window is brought up? Unless I can read more there's not a lot of point - my doc won't be convinced by one liners vaguely mentioning TN!

  • so sorry Chancery, I hadn't actually clicked on any, but this was more to show you that there are many people asking if TN and hypo is connected as they seem to have both, not to show your doc. A more scientific paper from a reputable source would be more convincing.

    If i have the time I will search for you but at this moment I am having other family health problems, but will be pleased to help if I can.

  • No, no, don't worry. I wouldn't actually show my doc someone's internet conversation - he thinks I'm crazy enough as it is! No, I just use it to give me ideas and pointers that I then research for something more solid, or I quote the stories together, if I can find a unifying factor. I just wanted to access the links properly to see what I could unearth. I'll try some things and see if I can't access them somehow. Just thought I'd ask you in case you used the site yourself and knew how to do the hacks! X

  • Me too.

  • Me too.

  • I myself have that from the GPs.Hope you will be better very soon.

  • Thanks, Fedup!

  • I have read this post and - I first have to say never take hubby to an appointment ever again - as for the ailments you have, trust your instincts, there is something that has been missed or disregarded out of hand, I too did the dance with my doctorS and decided to listen to the nurses instead, I have always said the higher up you are the less you know , I did my own blood tests after research on the internet, but the knowledge is one thing and the reality is another you may be going crazy, but then again you might not be, after twenty long years of fighting with my Practitioners I now feel normality coming back because I was right and they were indifferent (annoying) , my suggestion would be see the triage nurse more often than the doctor until your levels are settled enough for him. ( to eat his words)

  • Hi Moonwind. My partner is now too bad, honestly. It's like Clutter says up above, he really was put in a bad spot. That doesn't excuse him, of course, and it's been put in the black book, but he is generally a rock – always there for me. His contrition was absolute – none of his usual excuses. That's a sure sign that he knew he'd let me down!

    I agree with your remark that the higher up they are, the less they seem to know. That's definitely been my experience.

    I'm not sure we have triage nurses here in the UK, but I admit I am about as ignorant as you can get on how the NHS runs, so don't quote me on that. Certainly my surgery has a practice nurse and that's it. She's good, but I doubt she could help much by way of blood tests or assessing thyroid. I'm not sure they can even do tests – although maybe to measure cholesterol and the like… Like I say, really ignorant!

  • Hi Chancery, I feel your frustrations! I have a woman Gp who is just as dismissive and belligerent and tried to tell me all my problems (too many to list) where down to bad posture... absolutely refused to carry out thyroid tests and laughed when I said I thought I was going through early menopause (I'm 44, my mum and my cousin both went through it at 40) so after exiting in complete indignation and breaking down in tears of frustration at home I went down the self treat route, I was having those 'argument in my head' scenarios in the waiting room, could feel my blood pressure rising and almost panic attacks and decided that the stress wasn't worth it - I'm sending positive vibes your way that you get to the bottom of this. Just a suggesting regarding massage being too intrusive, a good reflexologist session will work on balancing your whole body just through your feet so not too much exposure and it really does relax you, maybe have a professional one as a treat and show your hubby how to do it for you to take your mind off your research ;-)

  • Bad posture? Well that's a first. She was really scraping the barrel there, Lisa. And I've encountered the double standard with the relatives' history thing too. When they want to make a diagnosis they will use your family history to back it up, but when you quote it to back up your theory, they pooh-pooh it. Talk about moving the goal posts. I have thyroid problems on my mother's side, but every time I mention it, my doc does the eyebrow raise and dismiss, as if I've suggested hypothyroidism can be caused by leprechauns.

    I know EXACTLY what you mean about the waiting room scenarios. I'm well ahead of you with that one. I go through all the possible ways the discussion might go days, sometimes weeks, in advance – trying to make it go in my favour. It can be helpful, but it does as much damage, making you anxious and running you ragged, and, of course, it doesn't stop you having to do the whole conflict thing in the first place. It's like you're steeling yourself for confrontation all the time. Not fun.

    And thank you for the suggestion of reflexology. It's definitely a better one, since all they 'attack' is your feet. I reckon I could handle that. If not, I could always just kick them!

  • Hypothyroid caused by Leprechauns? You might be on to something there! I think it's quite closely related to Hashimotos, known as Pixiemotos?!!! 😆😆😆

  • I think we should all start calling it Pixiemoto's, and referring to the fairy who cursed us. I doubt if docs could look at us any more sceptically anyway!

  • They've got wand envy! :-D

  • Nice one! Although, personally, I think they just snort too much fairy dust. Must be all those Big Phairy freebies....

  • Perhaps their wands don't work!!

  • Oh dear, poor things. Nothing worse than when a man's wand fails to deliver.

  • 😆😆😆

  • Know exactly how you feel! I have had health problems over the last six years. I have all the symptoms of hypothyroidism bar a few that do not pertain to me. These have escalated over the last year, my GP felt that I was malingering and because I had a respiratory assessment ( have had over 11 chest infections/prolonged colds since NOv 2013) "I should be satisfied?! A friend suggested Sjogrens and I consulted a Rheumatologist privately who agreed I had a lot of the symptoms.........bloods came back negative (does in 30% of Sjogrens) but she stated that this was really irrelevant. Rather than doing lip biopsy she has perfected a salivary gland ultrasound of which there are varying markers indicative of Sjogrens.........affected people only need to have one......I had none. However the scan did show that I had multiple nodules on my thyroid and my Cholesterol is high. I also have sicca ie dry mouth eyes throat but these are also symptoms of hypothyroidism.

    I have a new GP who I am also battling with as it is obvious they have lack of knowledge and are going down the blame route...........your too fat, don't eat a proper diet ( this doc could not get his expanding gut under the table and had three choccy biscuits with his tea) need to exercise and more insulting need to look after your basic hygiene. However he cannot ignore my scan findings and is annoyed that I went privately to get this. Sometimes I feel that I am loosing my mind because what is so blatant they don't see (or want to!)

  • You have my sympathy, Tess. Been there, done that, got the T-shirt. I've never been accused of malingering - yet - but no doubt that may come....

  • Dear Chancery,

    Please don't give up, if you can hang on in there. I know only too well the self-doubt that this constant, prolonged brushing off results in. Not for the same problems, admittedly, I developed diffuse repetetive strain injury. I battled with doctors physiotherapists, my employers, colleagues, friends and relatives for about 15 years. My lifelines were my alternative therapists. I had McTimony Chiropractic treatment, and acupuncture. I stress that these treatments helped me manage my problems, it wasn't a cure. The only cure was to stop working which I couldn't afford to do, and when I eventually managed it a lot of the damage was permanent. Even after leaving work I continued to press for medical retirement, and finally won, much to my surprise. I have been much better, but there are still many things I cannot do.

    I am currently trying to get a definitive answer on whether or not I have an overactive thyroid,and am getting stonewalled by my GP. On one phone appointment to check my results he told me that the level of supplement I was taking was okay. I said I wasn't taking thyroxine. He said was I sure, so I very quietly reminded him that I have never been prescribed that. He then read the lab report and said I could be retested in 3 months unless I was getting symptoms. When I saw him with a list of symptoms he was so disinterested I was stunned. I have problems with my eyes, and this can be connected so I am going to have an eye test, having already rung them and explained my concerns and the difficulties I am facing with my GP.

    I cannot understand why doctors don't like it when you research problems. I know it isn't as easy as ticking off a list of symptoms, but everyone should take some responsibility for their own health, and I have found by looking at different things on the internet I can rule out some things. I guess they aren't as able to use the "virus" or "syndrome" labels quite so freely.

    I would strongly recommend that you consider acupuncture if you are financially able to do so. Don't go for British Medical Acupuncture, have Traditional Chinese Acupuncture. The British Acupuncture Council can tell you of registered acupuncturists in your area. I used to go to a brilliant one in Cheltenham. They won't cure you, but you would probably get some relief from some of your symptoms, and you would be more able to cope with all the stress. If you decide to try it, go to someone who is prepared to give you a free 15 minute consultation, either on the phone or in person, and remember that it is important that you feel comfortable with whoever is treating you.

    I see that your post is a month ago, I do hope you get to read this, my heart goes out to you. I hope you get taken more seriously soon, and get the help you need.

  • Hi Senorita. I have actually been taking a break from all things medical and concentrating on more 'doing' things, like redecorating, and planting out my balcony. I'm trying to de-stress, and see if my doctor is right. Unfortunately, it's not curing the rash or helping the weight/ constipation/ overheating problems. But who knows, maybe that will come, if I can only ignore it enough...

  • Like you, Chancery, I have tried to stop focussing so much on my health recently. I wanted to show medics, and to myself too perhaps, that I did have other stuff going on in my life other than worrying about my health. I haven’t liked the underlying feeling I’ve had from some of my appointments that I’ve somehow brought on some of the health issues on myself through sheer worry or reading too much (although I call it “educating myself”).

    In theory, it works brilliantly – I have been doing more “stuff” (only reading, very gentle walking, a bit more gardening, being more sociable with friends and family, and other “easy” hobbies and house-related jobs). However, I still physically feel like crap. I’m sure there’s a message there … oh yes … I’m really not very well :)

  • Oh, I feel you, BM. I got offered a house exchange last week, which meant travelling on buses (long distance), redecorating at top speed, cleaning and stuffing my surplus rubbish everywhere, from under the bed to into an already overfull shed. My partner is taking part in the Edinburgh Fringe, so most of this fell to me. Part of me enjoyed being occupied from dawn till dusk, but other parts of me knew I was struggling. Going out alone to shop was an agoraphobic hurdle, carrying the heavy bags and negotiating buses on my own another one, then the sheer physical graft of scrubbing carpets by hand and climbing ladders when standing on tiptoe gives me vertigo. These are all drug-related problems, mostly, but the wipe-out I got towards the end was nothing to do with that. Second last day, before The Big Visit, I was reduced to tears from virtually the moment I got up, as everything went wrong. (Like sticking wooden beading to the floor with epoxy resin by accident, and falling upstairs with a full mop bucket causing a cascade of water down the stairwell, and we won't even start on the hoover falling apart before I could get the hoovering done). All of my accidents were caused by being overly tired and in pain, and it's then I realised that say whatever you want, I don't function as well as I should.

    Yes, it's definitely good to get away from all things medical, and more importantly worrying and stressing about them, but it never seems to be very long before you fall over just how weak/dizzy/stupid/tired you actually are under your epic efforts to be normal. But in all truth, I STILL don't know if he's right or not. Maybe this is all just stress…

  • He is NOT right. You know it, I know it, everyone reading your posts knows it. Stress doesn't help, but you wouldn't be so stressed if Dr Pratt was listening to you, and I mean listening, not just hearing your words. I don't believe that those of us who seek for answers, sifting through mountains of information to find the gold amongst the pyrites, make our symptoms fit what we are reading. I've got better things to do with my time than search for information but if my own Dr Pratt won't help me then I will help myself. And if I have to print it on rice paper and force feed him with it to make him take notice then I will. Though I'd rather print it on loo roll (used) and make him eat it. I'm afraid I have a very inventive mind when it comes to thinking of revenge measures on those professionals who are supposed to help me and do the exact opposite.

    Hope all things go well for you, stay strong, you are strong, just review what you've been doing, while feeling absolutely rubbish, and knowing you will make yourself feel worse for a time. That should show you how strong you are.

    Sending you healing, hugs and some of my strength. xx

  • Thank you, Senorita. I really appreciate the support and your determination that he is wrong, but I'm going to carry on and see how far self-belief can take me. There has to be a line, I think, when ill-health will prove itself. I hope! Otherwise I may go through life half-alive. I think you could very well be right, although I hope you're not (I know you know what I mean by that.) But only time will tell. In the meantime I will shower and ignore my spreading rash and sit at night and determinedly disregard my burning swollen ankles and hands (what is THAT about?) At the end of it all someone has to be right. Let's just hope it's him! X

  • Good luck, Chancery, but may I suggest that you write to your Dr Pratt telling him that you have taken to heart what he has said and what you are doing. You could also threaten to give him written updates on your progress. Well, maybe not. If you tell him that you have paid attention to what he has said he will feel better, and you

    may get him to listen to you.

    I have decided not to confront my GP, I've got a couple of sneaky moves up my sleeve which could well result in me getting what I'm asking for by a side door.

    Good luck, I'm thinking of you. If you ever want to let off steam do a reply and that will send me an email;I'll get on line as soon as I see it. X

  • You could be right about telling him I'm following his advice. That probably would flatter him, and that has to help. I'm going to see him tomorrow. I got thyroid test results today and they are back up to classic subclinical hypothyroid, just as they were 6 months ago. I really hoped they wouldn't be, but I'm not surprised. Yet I am still disproportionately disappointed.

    I'm going to ask him to let me have a trial of thyroid meds, just for three or four months (that's right, isn't it? You need about that long to know if they are working? It's not a quick fix.) I know he won't be happy about this but it seems bloody stupid to ignore it when meds might help out. Even if the 'dysfunction' is really being caused by Carbamazepine, it is still a dysfunction, so treating it is still appropriate.

    Oh, how I wish I'd had a thyroid test before I went on these meds - how much simpler everything would be. And I'm going to ask for a dermatologist referral. I worked out tonight that I've had the pet rash for around 14 months - way longer than acceptable. I think it may be a record for how long a doctor can ignore something!

    I'm sure it will all depress and exhaust me as usual, so I may take you up on your kind offer to let me vent tomorrow. XX

  • Hi Chancery, Good luck tomorrow. I find with my GP he responds better if I say, after I have explained the symptoms and the effect they are having on me, "I wondered if it would be a good idea to......., what do you think?" If I make it a question, ask his opinion, all that sort of thing I find he is more inclined to do what I want. It is sad that we have to pander to their egos. I went to see him last Friday, My thyroid indicates hyper rather than hypo, when I spoke to him on the phone he said that he thought the level of supplement I was on was sufficient, and then didn't accept it when I told him that I wasn't and never had been, on a supplement as my results have never indicated hypo, he then read the lab results which said to re-test in 3 months unless there were significant symptoms. I found a list of symptoms on Thyroid UK which I printed off and did all my ticks and added the others that weren't listed, and he barely glanced at it. He couldn't have shown more disinterest no matter how hard he tried. I think if I had taken a different approach he may have listened more. I do find it a bit worrying as we have Silent Ischaemia in the family, my mother had several heart attacks which eventually killed her and hyper thyroid can affect the heart. I also have significant problems with my eyes, to the point that I am not driving now. Enough moaning, I have to say he was my mum's doctor and he could not have been better. I nursed her for 7 years, the last 3 were 24/7, and he always listened to me and took into account what I said to him.

    Feel free to contact, I will try to check early just in case.

    Take care. X

  • Hi Senorita. The appointment went quite well, comparatively speaking. I got my doc to agree to a 6 week trial period, so I started tablets today. I don't feel cheerful about it; I really don't want to add another medication in to my life, but it's silly to not at least try it.

    He did, however, give me a lecture on how if my next blood test, at the end of the trial period, was normal he would stop/lower (not sure to be honest) medication, whether I felt better or not, because it was dangerous to keep me on it. How often I've read those words on this forum! But at least I know I can expect an argument….

  • Hi Chancery, glad it was a bit better today. I understand about not wanting to add more medication, but if you end up feeling better it will be worth it. I have no choice but to take strong pain medication every day, have done for years now, and luckily they are still effective because the next step would be morphine.

    Try not to think about what might happen in 6 weeks, positive thinking for now, about how much better you will feel, and how that will make your life easier.

    Thinking of you, and hoping all will go well. Don't hesitate to send message, I check my emails daily, and will get a notification. I don't know how to give you my email address, I would happily do that.


  • Thanks, Senorita, I appreciate all your help. I know where to find you and will take you up on your kind offer and send you a private message if I come unstuck! X

  • Good, feel free. X

You may also like...