Fighting back

[yorkshiregirl44]

Hi everyone,

Like many members on her iv had referral sto specialists and had to wait sometimes months for the appointment, only to be in and out in minutes and leave the office with my mouth wide open thinking what was that all about. I feel like thay have not listened, looked at me and any questions i raise they avoid ot dismiss. I dont beleive its just endo appointments as iv had other referrals also which have ended pretty much the same way.

So getting to the point as anyone taken out a complaint with a specialist due to some of the issues raised above. There comes a point when you say enough is enough and no wonder the NHS is in such crisis when first your gp does not listen and then the specialist is no better. We then return to the merry go round of visiting the doctor and some where down the line we get another referral. But guess what we feel no better...

Your thoughts and expereinces please

Christine

[shaws]

Yes, lots of members seem to be on a merry-go-round. I think most are now self-medicating which really isn't the best thing to do, but it is of necessity as they feel so much better.

[yorkshiregirl44 in reply to shaws]

Thanks Shaws,

Im going to hit hard from now on. If i have a consultation and i was not liistened to or for any other reason i am going to put a formal complaint in each time. Its not acceptable how we are treated, I remmeber my doctor saying to me if we run enough tests we ill find somehting wrong....well run them and you might just find somthing that is key to some of my sumptoms.

Thanks

Christine

[shaws in reply to yorkshiregirl44]

Christine, the problem is that they are following the guidelines so I doubt there is any recourse.

Some Endos are flexible but it is the guidelines which are flawed and because that is so, we have no leg to stand on. It's either take it or leave it. If we don't take levo and don't have an alternative we are in a far worse situation. Luckily members are able to support one another.

[marmaris in reply to shaws]

I totally agree and it is for this reason that I am going to take a letter into my Endo at the hospital before the 24 February and ask that it be read before he sees me. I will be outlining everything and then go in with the same letter and go through it with him. It is worth a try because I will also be outlining the fact that we wait a long time for these appointments, yet get very limited time with the specialist whilst we are there, and always forget things. I will let you know how I get on.

[yorkshiregirl44 in reply to marmaris]

That sounds like a really good idea. Its just not fair, many many times this has happened to me. The last one half an hour due to getting stuck in traffic and i was in there so quick i was speachless. I was speachless in more ways that one. He asked if me i was incontinent and i was trying to explain to him that i know when i need to go but often was still going after i thought i had fininshed. He then said do you know what incontinent means.I thought it meant no control..and thats what i was trying to say....

My sister had a rheumy appointment and the whole time a nurse was in and out of the room looking through the filing cabinet, my sister could not concentrate and left frustrated and in tears.

Please let me know how you go on

Christine

[marmaris in reply to yorkshiregirl44]

Many thanks Christine. yes I will post my results on here.

[shaws in reply to marmaris]

This is a link which is self-explanatory. I wonder if your Endo will be able to understand it.

web.archive.org/web/2010073...

[marmaris in reply to shaws]

Thanks for the link Shaws only showing one page. Yes I am well familiar with Dr Lowe he was well convinced that low T3 was the cause of Fibro. Sadly however it does not seem to be working for me.

[shaws in reply to marmaris]

You have to press the

(Full Text Free in pdf format)

which is under the title.

I had to stop one type of T3 as it began to cause me problems. I have changed to another and am well.

Sometimes it's not the 'levothyroxine' or 'liothyronine' but the fillers/binders in them which affects us.

[marmaris in reply to shaws]

I agree with that as I have just found out the hard way that a lot of my supplements from Holland and Barratt contain fillers. I have stopped them all. Was told that the Vit D that the doctor gave me was harmful also and contained a certain substance, got the info from another site. I have tried three T3 Tiromel, Cynomel and mercury pharma. All of them do not work.

[shaws in reply to marmaris]

I have only taken MP T3 and am now on Unipharma.

[shaws in reply to marmaris]

hormones or medications usually have to be bound with fillers/binders so we don't always know which ones will affect us.

[Hidden]

I've made formal complaints concerning my former surgery, now with the Parliamentary and Health Service Ombudsman and for which I'm not holding my breath.

I've also complained to the General Medical Council (bunch of shysters), Care Quality Commission, Healthwatch and the Professional Standards Authority who apparently 'regulate' the regulators but have no powers.

I now have as little to do with the NHS as possible as I no longer trust them with my health.

[marmaris in reply to Hidden]

Here here, I can second that....

[debber]

Hi Yorkshire girl

Welcome to the world of hypo that is misdiagnosed by most doctors. Be your own advocate as you know how you feel and listen to you body . I struggle since I was a kid with the and just thought this is just how it is. Well it's not how it is. You keep being persistent and find a doctor who knows. My doctor is hypo and she knows all about this and has gone up against other doctors with this. They are not all created equal for sure. No wish i could go back in time and know what I know now as I would have been a different person. This effects everything. You hang in there and it's never too late. Never give in until you are feeling better and pay attention to your sympyoms

[yorkshiregirl44 in reply to debber]

Maybe we should have a zombie day to show the public how we feel on a day to day basis. People cant see it, yet its one of the conditions that affects every organ in the body and zaps people of vital energy. I get so upset when some has a virus and they say i feel terrible, cant get out of bad, im weak, i cant think and so on.....hello i feel like saying thats what i feel like alot of the times.

The times in between im fighting to get answers

Thanks

Christine

[shaws in reply to yorkshiregirl44]

Why, (when eventually, if ever diagnosed) do we get other prescriptions free of charge? - because we are suffering from a severe life-threatening illness if untreated (or undertreated - this is my own point). Are they aware of this fact? I doubt it.

[sulamaye]

I took out a complaint against a hospital in 1999 when the actions they took lead to me nearly bleeding to death - they closed ranks and nothing came of it.

More recently I formally complained about my GP practice who cut my thyroid meds from 150mcg T4 and 20 mcg T3 to 100 mcg T4 alone over night, simply because my TSH was supressed which it had been for years! The health board decided the surgery could conduct it's own investigation .. I said that's a bit like the tabloids running the Leveson enquiry - what a surprise once again not worth the paper it was written on, however hopefully they won't do again so blithey to some other poor person!

Weigh up the energy involved. If it is about attitude you may get an apology, but whether it will make you feel any better, I doubt it. Good luck.

[yorkshiregirl44 in reply to sulamaye]

I do understand what you are saying totally....I complained about my last Gp and i was struck off, the complaint never got anywhere and the GP lied about what had happened.

What brought me to thinking that if we dont get a proper service from specialists or others was that i was trying to get support for my son who has ASD and severe anxiety. The mental health team came out to assess him and he was diagnosed with social anxiety and had 4 sessions of CBT. To cut a very long story short it was a mental health nurse and an admin worker who came out and i have ssince been challenging this and have told that mental health workers can not diagnose. Anyway prior to that i made acomplaint that there was no service to support my son and within a day of this someone rang me and came out to see me the day after.

I feel that in some ways this is happening with phyical conditions also...for example iv been give a fibro diagnosis only because they wont and do not run appropriate tests given the fact that a benign condition.

I garee with you that it is so very exhausting working through this and if the practice been complained about can run its own investigation chances are its going no where.

I will let you know if i do decide to take action where it leads me.

Thanks

Christine

[sulamaye in reply to yorkshiregirl44]

I have diagnosis of 'm.e' similar bucket as fibro to be dumped in. I think it's good to complain, just weigh up the impact on yourself v what will be achieved. I complained out of fury and spite despite knowing it would go nowhere, just because I don't think a GP should be allowed to in effect cause me harm and get away with it scot free.

[yorkshiregirl44 in reply to sulamaye]

I remember feeling like that..the fight bacame bigger than the cause, i was also givene the M.E. diagnosis...

[Hidden in reply to sulamaye]

I think you did the right thing sulamaye. Not easy making complaints when you know it's a waste of time but I find I can't sit back and do nothing, in my case 3 GPs had made error after error after error and consider it unforgivable the state they left me in.

What's really needed is a better way of dealing with complaints instead of the doctor is always right attitude.

[sulamaye]

Unfortunately, nothing seems to be making me any better, so what ever is wrong with me seems to go beyond low cortisol and low take up of T3 or conversion problems. When T3 only, hydrocortisone and all the right supplements don't work, plus LDN, what does one do, but cry....

[marmaris in reply to sulamaye]

I am in the same boat.

[sulamaye in reply to marmaris]

It's horrid isn't it? I had tried everything known to m.e questers, then when I thought my hypothyroidism may be at the root of it all my hopes were raised, this must be it, I will get my life back again, I will stop being bed/ housebound..... So upsetting. So it seems some of us really do have something more than badly treated hypothyroidism doesn't it?

[BeansMummy]

I'm still doing the rounds of lots of different specialists. Apart from being on endless waiting lists, and the feeling that you are "just a number" to some of the doctors, the thing I truly hate is the inability of the system to "join up the dots".

I have actually met some lovely doctors who seem to know more about Hashimoto's than the endocrinologists, but their hands are tied as to what they can do - they are supposed to treat whatever it is I have been referred for, and that seems to be that. So many of the health issues I have may or may not be related to the Hashimoto's - I still have this expectation that doctors should know what's what. It shouldn't be up to me to the patient to sort it all out, but that's how I feel it is.

There have been some big errors of judgement (by doctors) on my journey, "lost" referrals/test results, I've been given other people's results, and incorrect advice has been given to me, but I have never made a complaint. I still have this idea that it will put their backs up even more I think I need to add "being pathetic" to my list of symptoms.

[humanbean in reply to BeansMummy]

I feel the same as you BeansMummy. I've had good reason to complain over the last few years about something unrelated to thyroid issues. I didn't dare complain though, because it would have meant complaining about my local hospital. As I get older I am likely to need that hospital more and more. What kind of care will I get if I've complained about one of the consultants?

In an ideal world it would make no difference. But I wouldn't be surprised if I got treated like scum by the staff. So I keep quiet, and avoid doctors like the plague now.

[BeansMummy in reply to humanbean]

It has changed the way I deal all my treatment. When given test results, I always ask them to check that they are actually mine (I have twice been verbally given results during hospital appointments which are for another patient); I chase up referrals myself if they don't come through when they should (because I have had "urgent" ones disappear or not even been requested) and, as we all should, get all my test results printed out so that I have a copy, plus copies of any letters sent to my GP.

I am always polite, even when I might be seething inside, because I don't want any staff (secretarial, nursing or doctors) to see me a nuisance.