Went to see my doc to discuss blood tests today. This had already been postponed from another visit, so in total I've waited five weeks for this. When I get there we go through the usual preamble, where he asks me the same things he has had the answers to already - a dozen times. We discuss other business and he's finishing up, without mentioning my thyroid tests at all, when I put in "I'd like to try thyroid medication please".
Now this has already been pre-decided. I have subclinical hypothyroidism, as per blood tests, diagnosed by him, and he told me it would be best to treat it, to "nip it in the bud". I actually wasn't in favour at the time, but my body has been struggling with so many ailments recently I thought, 'No, I need to give it a leg up - and me a break', so I thought it was a no contest, slam dunk kind of thing - just remind him I should get a prescription.
Nope. Now he announces, "We'll test you again in a month and if the TSH has gone down and your T4 has gone up then we'll leave it at that. If it's got worse we'll see about giving you medication."
SEE about it? So that means no a new way, right?
This is him all over. First he says one thing, then the next time you see him he's changed his mind. I feel like I'm being doctored by a temperamental four year old.
Anyway, the end result is from being someone with an enlightened doc who actually offered to treat her subclinical hypothyroidism, I've suddenly changed, in a blink, to being yet another sufferer who's going to have to fight for every inch of condescension I get. As I am currently fighting him to get coeliac tests, and to have my B12 deficiency taken seriously (he reminded me yet again, at length, that it was all in my head), this is just the last straw. To say I am fed up is to put it mildly. I wish I could be treated by the surgery cat. If only it had one...
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Chancery
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well do remember and I know it is irritating that gluten intolerance does not show up, only fully blown Coeliac disease, so just try it out.... yes I have done it and yes it does make a difference.......MaryFx
Oh Mary, if only I could get as far as TESTING for the coeliac disease, I'd be ahead. I've been trying for roughly 4 or 5 months now to get an IgG coeliac test done. I've given blood for it twice and twice it has been ignored by the labs. First time they ignored it entirely, second time they did the wrong test. Now he's phoning the biochemist - again - to see how we can get it done. I have now drawn a line under it. This is the last one. If I don't get it this time, I'm going private, exorbitant cost or no. I really can't take any more of this punishment.
What I want to know is, though, if I prove to be positive for it after all, can I get a refund and an apology for all this ar*ing around?
I doubt they will re fund you, but if you do get the right test, as said above gluten intolerance will not show up anyway, the proof is to give it up.... I did and it has made a difference, 3 years this August. MaryF
I know it's considered the ultimate criteria, but I want something that is recognised by the NHS, Mary, so that if anything else goes wrong, as it seems to like to do with autoimmune, they have the full picture and treat it correctly, but also because I have more at stake, which is my trigeminal neuralgia. I need to know I'm doing the right thing to stop brain degeneration; I'd hate to spend years gluten-free only to find I was treating the wrong problem entirely, with disastrous results.
Yes I understand.... I now have full diagnosis of all 7 things and it does help to have some diagnosis, I also take the B12 sublingual drops. All the best to you. MaryF
Your doctor is continually changing his mind as he doesn't know what to do. Their knowledge of the thyroid is nearly non existent. Firstly we have the TSH test which is so inaccurate it really isn't worth using. The other blood tests, which you will be lucky to get are still only measuring blood serum levels and not what is present in the cells only symptoms and morning pulse before rising will give you this.
Have you got Dr Barry Durrant Peatfields book? The Great Thyroid Scandal and how to Survive it. It's well worth a read and a self help book. Your knowledge will increase dramatically. In his original copy, orange cover, my story is case 1 study. I would not be here if not for him. I needed T3 as T4 was not converting.
I'm afraid with current thyroid treatment you have to find a doctor who will treat outside the guidelines or help yourself. This all needs to be changed urgently as even the doctor who introduced this regime over 40 years ago has just admitted it doesn't work!. I have more info if you want to email me.
I'm in SWLondon and have started supplementing Magnesium, K2, Turmeric, and more but would liketomatoesand see a good doc and have come to terms with fact it will have to be privately. Homeopathy worth a shot?
Ay recommendations. I have Hashimoto's and 4 st weight gain to address.
Hi Angela homeopathy didn't work for me. It does sound that your metabolism isn't balanced to be that overweight. Have you tried Natural Thyroid Hormone?
Most definitely I wouldn't recommend anyone use T4 on its own as you have no idea if it will convert or not. If you mail me on lynthip@aol I will send you a document which you will find quite interesting
Yes, I read Dr Peatfield's book, Gismo - very interesting it was too. My quandary seems to be that I don't have any antibodies. My doc was all up for treating me when he saw the blood tests, which were quite textbook, but when I had zero antibodies he's obviously had a change of heart and thinks my thyroid problems may be a fluke. I have told him that my thyroid has been playing up for many years, I reckon, but he completely disregards that. In fact, he's never actually asked me if I have any symptoms. He never does, about anything. Blood tests are God, except for when he changes his mind, of course.
I actually asked him if it would be worthwhile testing for different antibodies (we only did the NHS standard one) and he said no, flatly, as is his wont. I wanted to yell, 'but what if I have off the scale antibodies for some other one?', but I shut up. I thought, let him have his retest, but I don't know where I'll be if it has got better, or worse, stayed the same - that will probably stymie him completely.
Hi have you ever thought about going to a doctor outside the UK? I go to Belgium to Dr Hertoghes clinic. They are very good and the testing is very extensive. They don't go solely by blood tests but how you feel. Take a look at his website
I will, thanks, Gismo, but it is just an exercise in frustration for me. I don't work because of my condition, so money is very tight. I can't even afford private testing, never mind trips abroad. But you never know, I might win the bonds. For sure, if I ever do, that's where I'm spending my ill-gotten gains!
His state of mind over my B12 situation can only be called irrational, if you are being very kind, Greygoose. Once again, I am hoist by having an unconventional B12 problem. My test result was 383 (or 384, I can never remember!), so far so normal, according to the NHS, but I read about the symptoms of deficiency and thought it was an exceptionally good fit for the problem I was having (trigeminal neuralgia). I also read that 400 was considered the healthy norm, so I was sub-par. I had a HUGE fight to get injections; I had to compile a dossier and present it, but I did get them.
It's a long story but within two months of starting the injections my trigeminal neuralgia pain went away. Bearing in mind that it's the 'worst pain known to man' and that hard drugs hadn't been able to remove it in ten months, this was nothing short of miraculous. But no, it was a coincidence. Now, some five months later, with the B12 still holding off the pain to the extent that I've halved my drugs and am still lowering them, it is, according to him, just one big placebo. So, a coincidence AND a placebo. The longest placebo known to man. It's a well-known fact that placebos don't work longterm, towit, the Lourdes effect, where people are 'cured' but not long after, their illness comes back. That hasn't happened to me, in FIVE months, but no, B12 played no part in this.
I get that he's a sceptic, I'm a sceptic too, ironically, but even I am not idiotic enough to keep yelling coincidence and placebo when something has patently changed/worked.
Indeed you can't. But the Japanese agree with you. In fact, their bottom range is 500 - anything lower can cause permenant neurological damage.
Mine was 350 when tested, and the doctor said it was 'perfect'. But I was losing the use of my right arm. It is back to normal after 11 months of B12 supplementation. Coincidence? I think not!
I know, GG. It does make you wonder though, doctors know that the Japanese have the 500 limit - God knows I tell mine often enough - do they think the Japanese are stupid, or overly cautious or what? Given that the Japanese believe in the 500 limit, and the Japanese are patently NOT stupid or ignorant, then might it not be the case that anyone under 500 may in fact be in danger and have a legitimate problem?
Things like this seem to be completely ignored by them, as if Moses came down from the mountain and wrote the NICE guidelines on tablets. It's like a form of religious bigotry - 'only our figures are the true figures'.
As with most geographical/geological factors, fluoride levels vary widely within Japan.
Thirty-eight children aged 2-8 years participated in a survey of fluoride intake. Twenty-one out of 38 children lived in an area in which the community water fluoride concentration was an average of 0.555 ppm (moderate fluoride area: MFA), and 17 lived in a low fluoride area (LFA), which ranged between 0.040 and 0.131 ppm.
Are there matching figures though, to show how this natural fluoride impacts on thyroid - if it impacts? Or on B12, if that's more where you were going here....
I was very simply pointing out the situation is not as simple as the Japanese islands having high fluoride levels. The levels vary considerably.
I was NOT trying at all to analyse the effects on thyroid, B12 or anything else. The quote was simply a readily available reference to observed fluoride levels.
I haven't been around much recently, but it's always worth catching up with the latest instalment of What Chancery's GP Did Next. Seriously though, have you thought about putting your concerns about your treatment and his volte face(s) in a polite letter? Just so it's on the record - you needn't label it 'complaint'.
I have stopped going to the GP for anything other than suspicious lumps, or bleeding from somewhere that shouldn't. Or for something that is so ridiculously apparent that even a doc can't deny it, like the current blepharitis that spread from my eye and took over the left side of my face in a day. (The root cause is a weeping eye, the flip side of Sjogren's.) However, not seeing a GP is not an option for everyone. I hope you find a way around this. I'll be thinking of you.
I'm the same way as Hill woman - I literally have to be forced to see the GP. I don't see them for my thyroid anymore. I just treat myself like HarryE.
Ah Hillwoman, I think I should tell him that he's starring in his own sitcom - he'd be round here so fast... I would say he'd probably never treat me again, but right now I'm wondering if that would be a loss.
I have actually thought about writing to him on several occasions - for example, his obsession with my B12 treatment being a placebo is really getting me down because he never misses an opportunity to tell me how irrelevant it is. I could live without that. You'd think a doc would be thrilled that something worked for a patient - not him. I actually had to tell him off for it this last visit. I was all confident about cutting my main drug (Carbamazepine) after my success in removing Gabapentin. He had encouraged me to cut them. Now he keeps warning me that I shouldn't - my pain will probably come back. What the hell? And he does this all the time.
So I told him off for it this time, and in fairness he accepted the rebuke and agreed it wasn't on to inspire fear in his own patient and undermine her efforts. Too little too late, mate, the damage is already done! It has definitely made it so much harder, because now I'm watching every twitch, waiting for that first lightning strike of pain - God rot his measly soul.
And I know exactly what you mean about not sharing anything with doctors. Even as often as I go, which feels like every week, I tend not to tell him anything more than I absolutely have to. I reckon I've developed Sjogren's but have kept it secret, until yesterday, when I just sort of casually mentioned it then moved on quickly. One, because I know he'll say I don't have it and I'll have to prove it to him and two, because it deflects him onto yet another thing and he's too easily distracted as it is. Got to keep him on course.
I pray for the day I have my health in such a place that I can run it myself and never have to enter their measly halls again...
I think most doctors cannot view any patient as their equal in terms of intelligence or education, no matter what the patient's background might be. There is also the fact that the profession tends to attract the most conservative, materialistic and narcissistic of those students who do well academically, who are then taught at tertiary level by medics whose own knowledge may be years out of date. It's a recipe for endlessly frustrating, unproductive and contentious encounters between doctors and patients. Stop me if I've said all this before - I know I have somewhere!
I think you've described your GP as a 'knob', and that seems apposite. I've been known to use the term myself... Is he your only choice in your local area?
You have summed up the full horror of the medical profession admirably, H. I was thinking about its failures today and realised that the NHS works admirably for emergencies and everyday complaints - they have procedures and protocols for those, a guidebook that generally works. But the large mass in the middle; the chronically ill, the people with poor or no diagnosis, the mystery ailments; it's them it lets down dreadfully. If there isn't a clear-cut path for them to follow, a drug that will heal the problem, a protocol that clears it all right up, they flounder like fish out of water.
As for leaving my doc, you don't know how much I wish I could just silently slip away, but I have one weakness; it's my real Achilles heel - he gives me B12 injections when I don't, technically, have a reason to get them. Yes, they took my pain away when drugs didn't, but my blood tests don't back that analysis up. This means any average, unimaginative doc looking at my problem could cut my injections off in a blink, and I really don't want to have to inject myself. Plus, of course, I resent having to pay for all my own B12 supplies. That's their job, especially as the injections save the NHS a hell of a lot of money on anti-convulsants.
But who knows, some day maybe I'll just crack and walk....
You're quite right to worry about the B12 injections, Chancery, and I don't blame you in the least for staying put. I was just so appalled this GP could insist their effect is placebo (even though, as you say, placebo effects are only short-term) and also terrorise you with the prospect of the return of TN. The man is a bully.
I wouldn't want you to think that I found it easy just to walk away from GP care; my finances are currently stable, but last year they were not and next year, who knows? It's a big thing to give up free care and advice and it took me many, many years of illness to get off the treadmill of trying to reason with numerous docs, providing them with cogent evidence, and persuading them to see my point of view and treat me effectively and humanely. I rarely succeeded, and often I thought I must be to blame for that. I wasn't, of course. Medics as a group are just not capable of recognising the rights and abilities of patients to determine and participate in their own care, nor are they willing to do so - whatever the current window-dressing/sloganeering on this very subject. By the way, I don't know if you've read a book by Henry Marsh, a brain surgeon (Do No Harm), but he describes how doctors regard patients as belonging to a different race - he actually uses that word. It explains a great deal.
You're absolutely spot on in your analysis of what the NHS as an institution can handle - and it can't seem to handle us, the chronically ill.
That looks like an interesting book, H, thanks for that - I've ordered it from my library. I'm not sure from what you say if Marsh thinks patients are a different race, or he condemns other doctors for doing it! I still want to read it, either way. I'm always looking for work by good doctors; I'm so desperate to find reassurance that it's not my imagination that my doctor is a narrow-minded buffoon!
I find that his constant - and I mean constant - undermining of everything I think and do is very debilitating. It's bad enough to have TN (and everything else I seem to be acquiring) without his constant rug pulling.
Malcolm Kendrick cheered me up in his new book saying 'never believe anything is impossible'. I felt like kissing his feet. After one of my 'lively debates' with my doc, he pronounced that I would 'never know what caused my TN and never cure it'. There were a few more nevers there too, although I can't remember them now, and I found it both offensive and profoundly stupid. How could a man of science EVER make a statement like that? Even ten years ago there were things we didn't know about medicine. There was a time, not too long ago, we didn't even know to wash our hands before operating, or that you could prevent an illness by injecting a little of it into the system, or that radioactivity was both cancer-inducing and part of several invaluable therapeutic treatments. How can he say things like that, just from a scientific view point? - leaving out how destructive it is to say it to someone who is struggling.
I find good medical writers are invaluable - to cheer you up that not all doctors think like that and reassure you that some of them do have imagination, and don't disapprove of using it as if it was a form of mumbo-jumbo. I wouldn't mind if I was a tinfoil hat wearing, homeopathy zealot, but I'm not. I'm as sceptical as I can be, and try and get the best evidence for everything. I work hard at being suspicious and not gullible, but you do have to feel that progress can be made, otherwise why live at all?
And I can only admire you for carving your own path through medicine. It's never an easy situation to go out on a limb by yourself. I have made a decision finally to draw a line under this coeliac testing I'm trying to get, if the next test I have goes the same way as all the others. It's not worth the aggravation, so I've made a plan, and I intend to stick to it. It'll cost me, but it will be worth it for the sheer relief from stress.
I'm telling you, if I wasn't so bloody old and tired I'd go and study medicine just so I could treat myself properly and shut up doctors who talk tripe!
Chancery, your GP sounds more like a priest than a scientist. As you mentioned Malcolm Kendrick, I take it you've seen his blog post on this very subject? I think it's true that not many medics have much imagination, which means they aren't really capable of that ability they think verges on the paranormal: empathy. But if you can't think like a scientist and also extend to some imaginative sympathy, then you cannot 'doctor' your patients effectively.
I got Henry Marsh's book from my county library service. As a consequence of all the cuts, this is now a major logistical feat, so I don't have it to hand (a far-flung branch is only open on the first Monday after a full moon, and books may be returned, but not borrowed, at the vernal and autumn equinoxes). As far as I can remember, he uses the word 'race' when he discusses the general attitude of his profession towards patients, during a chapter when he becomes a patient himself. He is sufficiently self-aware that he examines his own attitudes too. Mostly, he comes across as a genuine human being, who did not follow the standard route into medicine (there's hope for your career change yet!) and so has more compassion than most, and a willingness to own up to making terrible mistakes. That doesn't entirely absolve him of judgmental attitudes though, and I lost some sympathy with him when he described, in one of the later chapters, an outpatient clinic full of patients in chronic neuropathic pain. You may have something to say about that from your own experience! There's a lot more I could say about the book, but I don't want to spoil it for you. It's a very good read and quite well written too. There was a BBC documentary about his trips to Ukraine, shown before the book was published. He is a fantastically morose man - not surprising, given his specialism. In the book he also talks about NHS management, battles with whom precipitated his retirement.
Well, H, I can see why the poor man would be morose - I feel suicidal after fifteen minutes with my doc's by-the-book illogical 'logic' - can you imagine what it would be like working in it 24/7? I know for sure that if I could make it through medical school on my meds, I definitely would NOT go to work for the NHS. And that's not because I wouldn't want to work with the great unwashed. On the contrary, I'd be desperate to help exactly them, but the NHS doesn't let you help anyone. It's not what they're there for. It's identify the symptom, dish the drug. Nothing more. They might as well be run by Novartis.
Maybe it's deliberate; Mr Cameron is sort of easing us into the big moment when he floats the NHS on the stock market. Although by the time they've finished with it, it might be like one of those Liverpool homes, sold off for £1 on the grounds that you need to renovate it because it's unliveable with as it stands.
And you're right about my doc being like a priest, I'd never thought of that before, you astute old thing, you! No seriously, I find it all too easy when I'm struggling against the 'you're insane, you' school of treatment to be so busy questioning myself that I often miss where the other half is going patently bonkers, and you're right, he is like a priest - laying down the holy dictums, only following the creeds he's been given, working with out of date and plain ignorant information, and criticising my beliefs as if he has a direct pipeline to God and knows all the answers. Yep, you nailed him in one. I thank you for giving me yet another source of ridicule and private jokes to ease my lonely rancour.
And I hear you on the library front. I'm sufficiently ancient that I can remember inter-library loans. Oh, golden days, halcyon days. They meant you could get a book from anywhere that had it, which opened up a whole vista of knowledge. And think how much easier that would be now, with the interwebs, but no, not to be, they took it all away.
And my library has a book requesting system that would frighten freemasons, it's so secret. You ask them if they'll buy a book and mostly you never hear from them again, not even an acknowledgment that you spoke. But sometimes, randomly, you get a chatty email from someone called something innocuous, like Emma, telling you that they really liked your recommendation and they're buying the book - then it disappears into the mist again and the book sits on order, and it sits, and it sits, and it sits - and you can't pre-order it, or earmark it for yourself, even although you requested it.
I've been waiting for a gluten book by the maestro Alessio Fasano for months now and it just sits there in the catalogue, teasing me and teasing me but never arriving. Ah they are Satan's spawn, down there in that homely little den....
Inter-library loans...yes, I remember those too... Then they started charging £5 per book. Then the rule changed to non-fiction only, so if, as part of some research, I needed to request a novel or translation, I was actually told to trace and buy my own copy via a second-hand dealer - even if that book was lying unread and mouldering gently in another county's library, or the huge BL depository at Wetherby.
And you're right about the coming NHS sell-off. It's already largely controlled by the pharmaceuticals, so I wonder if they'll divvy it up between them by region? I just hope my area goes to a company that deals mainly in veterinary drugs, because I would much rather get treatment from my sensible vets.
Ooh yes, I did once have a very good vet - not me personally, you understand - my cat. But he was good. I have to be frank, now when you put the notion in my head, he would have made a damn fine doctor.
Yep, bring it on, David, sell the NHS to a veterinary pharmaceutical firm - I'm ready....
Sorry, H, me again - forgot to ask, which Kendrick blog post do you have in mind? I do read his blog, but only started two or three weeks ago, so if it's not recent, I may have missed it....
Nope, haven't read that one. Off to enjoy right now....
E.T.A. Had read it - that shows you how crap my memory is! However, it was a goodie, so thoroughly enjoyed a reread, especially after what we've been discussing. I get his point even more now and feel better about my doc's attitude - so a win all round, thanks.
I know, Beans. To use that great northern expression, what's he like? I'm doubly annoyed about it because he so took me by surprise I agreed to wait a month for trying for a coeliac test again, and that is (another) month far too long. It doesn't take a month to phone a lab. The worst thing about it is I'm desperate to cut back/lose wheat and I keep having to eat it, twice a day, while he buggers about. Curse his eyes.
Actually, you know, Glyn, I have been tempted to say that to him many times. Instead I yell it at my partner in one of my many post doctor visits. Every time I go to see him I come out more depressed than when I went in. That can't be right, surely, I say. Oh, if only....
Thank you, Trend, those are exceptionally good links. I'm ashamed to say I hadn't seen them before. I am going to have a look at my blood tests with a fresh eye and see if anything strikes me as being amiss. They all looked okay to me and I did run them past folks on here, but perhaps it would be worth taking another look, since I didn't have a clue about some of them. Thanks again!
Unwell, Londinium? I wish - he's just slapdash and disinterested. I actually have told him off for his volte faces a couple of times, but what gets me about him is that he doesn't even seem to know he's doing it. It's so callous. That's what I really find unforgiveable.
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Subclinical hypothyroidism but no medication
How can I help my son?
Omg!! Update 31/12 - Results are back
