Why do we have to put up with such patronising attitudes?

[delabutte]

Having already seen one very rude Professor in Endocrinology at the first hospital I was sent to, my GP had referred me to my local hospital for a second opinion (having complained constantly about my throat and weight gain, as well as many other symptoms) after being shown to have chronic thyroiditis on ultrasound and she also specified to me which doctor she wanted me to see but I do not know whether she named that doctor on her referral letter.

The first appointment I had for the second opinion did not go well, the young doctor (not from the specified doctor’s team) was dismissive of any of my symptoms (and I have a long list) being thyroid related and suggested that if my blood and urine tests did not show me to be diabetic then I could be discharged from clinic.

I had my second appointment with another Endo Registrar (again not from the specified doctor’s team) a couple of weeks ago.

Still seething.

The blood tests showed nothing abnormal.

The urine sample was “never received” - i.e. do it again.

The opinion was that none of my symptoms are thyroid related (these include, amongst many, a huge weight gain since, hair falling out, eye problems, itchy skin, always feeling tired no matter how much sleep I get and just grotty in general, and all this since starting Levo). This time I asked directly whether I might have conversion problems and the possibility of T3 for a trial period. After checking with me that I really am 56, he gave me a really sad, sympathetic but ultimately patronising look and then his basic answers to my questions were:

• there is no evidence to show such a thing as conversion problems exist

• all research in this area, apart from the first research done, show no improvement by using T3, in fact the subsequent research prove the conversion theory to be nonsense, as is allowing TSH to become suppressed.

• everything I deem to be wrong with me is most likely to be due to the menopause and bloods were taken to prove this theory.

• perhaps I would benefit from attending either a weight loss clinic or a chronic fatigue clinic.

• There is nothing wrong with my thyroid, it’s working perfectly well. (This is the second time I have been told this by an Endo – even my unsympathetic doctor baulked at this statement).

I pointed out that my GP had gone down the “it’s the menopause” route about three years ago and my bloods showed my hormone levels to be normal, i.e. not in the menopause. The Registrar was almost triumphant that, should I be shown now as menopausal, (and three years have passed since the last test so by now I could be menopausal) this would then explain my symptoms. As my symptoms have continued from a point of not being menopausal, I view this approach is the medical equivalent of a “get out of jail free” card, as I am female therefore at some point the menopause is inevitable.

The Registrar noted my TSH (being, he insisted, the only marker for thyroid problems) is slightly suppressed and said I must have my current dose of 150 mcg Levothyroxine reduced to no more than 125mcg as, in his opinion, I feel unwell as I am over-medicated. I told the Registrar that last time my GP did this they found my TSH shot up and my T4 went below range. He looked at me as if I was mad.

I asked for the previous blood results but the subject was quickly changed back to the fact that I needed to do another 24hr urine sample and have further blood tests and swiftly ejected from the consulting room.

From the Registrar’s comments about T3, I understand that those thyroid patients who are on anything but a dose of Levothyroxine which does not suppress TSH cannot possibly feel well or function. I am sure those of you lucky enough to be on T3 and feeling better will be amazed to know that it cannot be due to the T3.

He has now written to my GP stating that my thyroid results are normal, my medication must be reduced and that I am likely to be suffering from Chronic Fatigue.

Just in case anyone is wondering, no, I don’t believe this Registrar is doing anything but toeing the line and I do not believe that all research shows no benefit from T3, just as I don’t believe we only require syntheticT4 or that NDT should not be used.

Above all, why would being menopausal negate any thyroid related symptoms? The Endocrinologist and my GP are already aware that I suffer with chronic thyroiditis, which has been ignored despite my repeated complaints about the discomfort.

I really do wonder if keep going to these quacks is really worth the effort. Although I am sure I am in better health than many on this site, yet Dignitas beckons!

[swmartin]

Go private - or move doctor / house. This wasn't Royal Surrey, by any chance?

[delabutte in reply to swmartin]

No, I'm in Salford. I think these attitudes are pretty much nationally endemic.

[LouiseRoberts]

List of 'good' NHS Endos from me - [e-mail]

Louise

x

[ChemicalAngel in reply to LouiseRoberts]

Hi Louise, I have emailled to ask for the list

Thanks babe

Ann xx

[alangardner in reply to LouiseRoberts]

could you pass on any details of any good endo's at barts trust please ,

[Hidden in reply to alangardner]

Hi Alan

Email me for the list - not sure where they are. x

[debjs]

Hmmm the menopause thing is interesting. I was told that many of my symptoms following my thyroidectomy were due to the menopause to which I replied that would be difficult as I haven't had a period for over 6 years! It was my supportive GP who said she thought I had a conversion problem.

[Hidden]

Immediately after being put on levothyroxine, I developed bad leg pains when I walked any kind of distance. I complained about it and eventually was sent to a 'consultant' who measured the blood pressure in my legs etc.

When I asked the 'expert' what I could do about it, his reply: 'get used to it". You do realise that we're dealing with the next best thing to a religious caste when we talk about the medical profession. Read/listen to Jonathon Miller on the subject.

Eg,youtube.com/watch?v=w2mMpkB...(Not working as expected?)

[delabutte in reply to Hidden]

I think we are supposed to put up and shut up. I have been told by GP and Endos that I do feel well, I must do because my bloods are within range. So apparently I do not know that I am "better". Couldn't possibly be because beibg "within range" is not right for me. Then again, these days everything is a box ticking exercise and I suppose "within range" equals job done, next patient.

[Hidden]

Well, it depends what you mean about being well. After all, As JM above points out, disease is actually dis - ease, a state of not being at ease with one's self.

Until a couple of years ago, I'd never been ill in my life. Never been in hospital. But when I got ill, I realized that the connection between the brain and the body is infinitely more complex than I could have ever imagined.

The real problem with doctors and the 'health' system is precisely that, it's a system, largely regulated by cost and driven by ideological objectives, eg privatization. Thus my GP gets pissed off if he has to spend more than 10 minutes with me and starts shoving me out of the door. Well f*ck him!

I'm not a disease or a blood test but a human being, complicated and contradictory and need to be dealt with as a person rather than a body on an assembly line to be dosed and disposed of.

The people being 'offed' in their 1000s up and down the country in NHS hospitals are one result of this approach.

When I had a heart attack last year, I lucked out and ended up in an excellent hospital in S. London and got superb treatment from nurses who, when I talked to them, were in tears over what was being done to 'our' health system.

But from hi-tech surgery to a gp who didn't even get all the info from the hospital following my release. It's ludicrous!

[Maddie]

Just wondered if your discussion about T3 was with a doctor from the endo department at Salford Royal, if so I had the same conversation. Even stranger, I get T3 from another doctor in the same department - Maddie

[delabutte in reply to Maddie]

I don't think we are supposed to "out" the hospitals on the public pages but yes, that's the right one and it's my second opinion referral, just not under the sympathetic doctor my GP had wanted me to see. What annoys me is a) "it's the menopause" and b) I must be well because my bloods are in range. Finding that the Endo was also in denial of conversion problems and flatly refused to discuss this was just the last straw. I just feel the blighters have got me cornered at the moment.

[Maddie]

It certainy does sound like the same doctor, I mistakenly agreed to stop my T3 and increase my Thyroxine when I saw him. My usual doctor was off sick. This was a big mistake on my part as I then could not get it reinstated. My T3 started to drop out of range and even my GP said it looks like you have a conversion problem.

Fortunately, my usual consultant returned and I was able to get T3 prescribed again.

I see that you live in Salford, so do I. If you want to meet up let me know. I'm around this weekend - Maddie

[delabutte in reply to Maddie]

Maddie, sent you a PM

[cc120]

Shocking treatment!