Scottish Parliament Petition by S Whyte, M Dyer and L Cleaver on effective thyroid and adrenal testing, diagnosis and treatment;

Sorry if somebody else has already posted this. I couldn't find the news item on the STV news but I did find the Scottish Parliamentary Petitions sitting on 28 May and the link is here: scottish.parliament.uk/news...

It's the 6th petition of many so will probably be not too far in but my laptop is playing up.

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  • Thank you for posting this. There were some very good points made. Pretty positive too. It's nice to hear people that sound like they are on 'our side' for a change. Now we need to get something like this going on in England. (if not, im moving to Scotland :))

  • There have been numerous attempts to 'get something like this going on in England'. Unfortunately the system works very differently in England and it's unbelievably difficult. For example, to get something debated in the House of Commons, one needs to raise a whopping 100,000 signature petition. See here

    epetitions.direct.gov.uk/ho...

    As laladrew says below, we're all desperately hoping that 'If Scotland makes changes, the rest must surely follow.'

  • Hi I am one of the three petitioners and you're right Whippetlover, our petition was discussed quite far in at 89 minutes.

    We are thrilled with how it went and Elaine Smith MSP spoke up briliantly in support. We await the date of the Round Table meeting and are busy gathering evidence to present. All three of us are impressed with the process. If Scotland makes changes, the rest must surely follow.

  • Many thanks to you all Lala, you're doing a fantastic job!

  • I can't thank you enough for what you are doing.

  • For a link to the Petition film shown on STV, please see the current news item on our main website here:

    thyroiduk.org.uk/tuk/news.h...

    Info about the petition and it's progress can be found in the Campaigns section here:

    thyroiduk.org.uk/tuk/campai...

  • Thanks for this

  • Thanks Red, and for the links! I am so distracted today with the amount of research that's out there to rebut Professor Toft's assertion that only a minority of thyroid patients are unhappy with thier treatment :-) as he said in the STV news report.

  • Well done you girls, I am proud of you.

  • Even if it is a minority that are not happy with their treatment, does that mean it doesn't matter? Of course not! This so called minority are as entitled to good medical care as anyone else, and that means giving them the chance to try every possible thyroid treatment etc in order to find out works best for them.

  • Well quite RedApple! And he did suggest that there was a reluctance to send this minority to specialists for help - yes there is, but even when we are sent to endocrinologists (the specialists!?) we are not helped more often than not because of the wonderful RCP guidelines.

  • Yeh! and he also says the majority are quite happy with their treatment. Can we have a show of hands please.

  • Because most are told their symptoms are "something else", to hide the fact that treatment isn't working effectively. Along with your show of hands, I'll ask for one from those amongst us who are told we have ME/CFS/Fibro. The classic "go away, I can't be bothered to do any more tests" diagnoses that mean diddly squit.

  • Thanks Lala and all the petitioners and everybody that has supported getting to this stage! It's fantastic. I am lucky enough to live in Scotland so will benefit from any changes that this brings about. It might be so good it makes up for it getting dark at 3 pm through December ;)

  • I thought the meeting was outstanding. I'm newly diagnosed hypo, but am learning very fast through reading and talking to other 'sufferers' , that as far as Dr Toft's assertion goes, when you go in to your GP's/endo's office feeling very poorly indeed with an assortment of problems, and you are told by the expert that your bloods for thyroid have come back 'FINE' now that you are on Levo, then you will believe him/her unconditionally....you almost loose the brain power to question anything, or don't want to waste the doctor's time. Oh at least it's not the thyroid then; doc says it's fine. Must be me being silly. In two months I've spoken to a number of women I know who have told me "oh yes my thyroid is being treated - it's sorted." But all of them FEEL awful!!! I have to stop myself rambling with this subject...it's really getting under my skin because it affects SO many people and is utterly ruining lives. So, a very loud hooray for these Scottish pioneers.

  • I've become convinced that there is no such thing as fibromyalgia with which I am diagnosed or CFS with which I am also diagnosed. They both started years before my thyroid 'failed' but a naturopath said it was my thyroid,. I was seeing her for back pain and after getting to know me a little she asked me questions about my constant fatigue and low mood. I asked her about my puffy, blotchy hands and feet and that was her diagnosis. She was also an MD but had become so disullusioned she had gone over to practising natural medicine.

  • When a highly able MD has to give up on NHS service - that says it all.

    The ones [mostly] who stay have been bought/owned, by the 'NICE/Rules/Advisory' comfort blanket -sad to say.

    Private is expensive for individuals to pursue.

    People are suffering due to this mindset & diagnostic lack.

    When/How will it all stop?

  • Maybe the other Scottish ladies will understand when I say 'It's a sare fecht' but they have done wonders for that hard fight this week.

  • I've just watched the videos and I am shocked and surprised by Dr Toft's response. Does he personally know all the sufferers of hypothyroidism? He certainly does not and should not say such a blanket statement. I've had my right lobe removed due to thyroid cancer earlier this year and I am certainly not happy with my 'hypothyroidsim'. My endo surgeon saw me 5 weeks after my surgery and diagnosed me as hypothyroid based on my symptoms. He prescribed 75mcg Levothyroxine but my symptoms have not improved. I saw him 12 days ago after I complained that I was not getting any better and he said I couldn't be hypothyroid because my TSH had gone down. It had only gone down because I was on the levothyroxine, without it it would be much higher! He has now referred me to an endocrinologist because he can only prescribe T4 (his words not mine) and he thinks it might be something else. Yes, it is...I cannot convert T4 to T3 efficiently. That's my problem!!!!!!!!!!!!!

    It's a case of watch this space, but in the meantime my health isn't improving and I am losing my job. My employers threatened to sack me if I didn't return to work when my paid sick leave ended and that ceased a couple of weeks ago. She is now hassling me for a home visit and I'm not well enough to see her. I spend most of my time sleeping or resting because I don't have the energy anymore. I try to walk my dog but after 10 minutes around the housing estate I'm ready for bed again. This is no life!

    Let's hope that the petition that has been started with get us all somewhere. I, for one, have signed it and posted it on facebook for my friends to support. As my friend keeps saying to me "the wagon with squeaky wheel get oiled". We'd all better start squeaking loud and clear!!!

  • Dr Toft being the 'go to guy' for the govt is a problem and I find his attitude impossible to take. He does not speak for all hypothyroid sufferers.

    With regard to your boss. If you had the right of paid sick leave, even if that has expired I don't think she has any right to push you or even ring you. She should go through occupational health if it exists and if not should be reminded of your rights as somebody who is unwell.

    I allowed myself to be hounded out of my career and I will always regret it. I am now going for early retirement on health grounds given that I didn't work at all for the last six months of my career - her hounding made it worse and worse and more impossible to deal with when i was unwell. Please seek advice about your rights. Sorry I can't tell you what they are, but I don't know enough. Your post really touched my heart .

  • Thank you for support.

    I've only worked at the organisation, a well known education charity, since 2nd July last year and I don't think I have any employment rights because I haven't worked there for a year yet. I've been off sick since 5th February when I got my diagnosis of cancer and it has been a long and difficult journey to travel. I have asked my union rep to attend just for some moral support. My thoughts are that my boss will try to get rid of me before 1st July when I will have employment rights, even though my sick note is until 2nd August.

    I was talking to my neighbour yesterday and he employer insisted on home visits and at the last one turned up with a P45. It's something you don't need when you are ill, compassion, sympathy and support are needed not kicking you when you are down.

  • I'm not sure what your rights are in the voluntary sector at under one year. It would be nice if it was impossible for them to pay you off whilst you have an ongoing sick note! I went through breast cancer last year but am now in remission tg! It is a hard road to travel indeed. Good luck.

  • Well, that was certainly a most interesting discussion and how refreshing was it that those Committee members were genuinely concerned. Good to see Elaine Smith involved too.

    I do hope that the non-supply of T3 doesn't overshadow the original purpose of the Petition, obviously it is extremely important too.

    Do wonder what tosh the RCP will spout at the Round Table discussion, they'll have their work cut out defending their stance!!

    Will the Petitioners be invited to the Round Table discussion? I do hope so, they've been doing a brilliant job.

  • Thank you Petitioners for speaking for the ones that cant at mo with our conditions, a graves sufferer

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