For thyroid awareness week 2 years ago I spoke on "This Morning" tv programme and then last year I raised around £1300 (I think) by doing a sponsored silence.
This year I didn't think that I could ask friends and family for money … again. So I looked at the list of suggestions that Thyroid UK have, "write to your MP about the Scottish Thyroid Petition" so I did.
Caroline Spelman actually visited me in 2009 when I was battling with the Council for a blue disabled badge and trying to get Armour thyroid prescribed which I was taking under Dr Skinner's care at the time. I managed to get the blue badge (now expired and no longer required) and the Dept of Health wrote to me to say that all Doctors can prescribe NDT on a named patient basis as long as they take responsibility.
So Caroline replied asking me to attend an appointment at one of her surgeries. I saw her just a few weeks ago. I explained about the Scottish Thyroid Petition and how, in England we have to have 100,000 signatures to force a debate. She said that there was no need as she could apply for an Adjournment debate. The idea being that I could contact members of this forum and ask them to contact their MP's with their story and ask their MP to attend the debate. The Health Minister has to attend when it is a health matter.
Caroline's application was accepted but we were only given a few days notice unfortunately.
I think that she did a reasonably good job apart from a couple of errors. The outcome is not surprising though.
Well done! You have raised awareness in parliament, which is something we didn't think could be done without the 100,000 signatures. It's such a shame that the RCP just will not budge on this issue. Maybe if more of us write to our MPs maybe they'll grasp that it's not just a few of us who are having trouble with the current diagnostic and treatment practices.
I wonder how we could persuade someone to research the effectiveness and safety of alternative thyroid treatments. Perhaps companies such as Armour might be interested in proving their product empirically safe and effective. I suspect anyone who does this research on behalf of the NHS will find there is no benefit but drug companies themselves have no agenda other than to sell their medications.
Well done Sue.....and well done Caroline Spelman too. She did very well I thought at such short notice and having to speak on a subject that is not easy to grasp. The health minister gave all the standard replies fed to her by the usual culprits, and I wouldn't expect her to know otherwise. It's a good start though. Jane x
very well done suze, this is new info to me and could be extremely useful for the future . take a well deserved bow for your efforts --- I personally salute you .....alan xx
Thank you to Sue & Caroline, it"s a great start. One day hey!
I thought it was wonderful Suze. What a pity that it was brought to an almost empty chamber. I agree that we all need to write to our MPs with out own stories. Perhaps something will be done for future generations. I will be too old by then but I am making progress on the T3 route now - with good results. I will report further down the line.
Thinking we should write to our own MP's commending this beginning and copying to Mrs Caroline Spelman (Meriden) (Con) lady in mustard, and Jim Shannon (Strangford) (DUP) think he was the older man suggesting checking on family history and The Parliamentary Under-Secretary of State for Health (Jane Ellison) lady in mauve -
Part of me felt upset watching not having realised that I am finding the whole NHS not listening issue distressing - now I know myself better! I was quite racey having remmeberd my afternoon dose in time for a change!
I am having to fund my own T3 at the moment BUT at least they confirmed the named patient basis HURRAH HURRAH HURRAH and have opened a debate. Don't worry that there were a few errorrs at this stage it's debate that's required.
Pens out at the ready after all what are a few more letters at this writing time of year HA HA
It' early days yet but I want to tell you about an experience I've had this week. I have been tested for hypothyroidism countless number of times over the past thirty years and always been told the blood tests showed I did not need treatment. My sister has been prescribed thyroid medication for most of that time and it was she who first suggested to me that my symptoms may indicate an underactive thyroid. I am now in my seventies so it's easy for medical people, and others, to put all my symptoms (there are many) down to old age and ME which I have had for over forty years (long before it was oficially recognised) and fybromyalgia (a more recent problem). Last week I had a thorough examination, blood tests, and scans concerned with heart and lung function and am awaiting the outcome, in the meantime I have been given inhalers and a diagnosis of probable COPD. My breathlessness only marginally improved with the inhaler I had used for three days but there was no improvement in energy or stamina or ease of movement. I have not used the steroid inhaler for long enough to see any difference and I believe it takes time to build up. However, I visited my homeopath on Tuseday and she gave me a treatment for thyroid function which I took on Tuesday, Wednesday and Thursday. I could not at fisrt believe the dramatic improvement was due soley to those little pilules and especially as I had used the dilating inhaler on Tuesday before taking the homeopathic, so I did not use the inhaler on Wednesday and Thursday. To-day, Friday, I have taken no medications, allopathic or homeopathic and I have struggled - I have not relapsed to the dire state I was in last week and for several weeks before (things had been getting worse since August and I had been going down hill rapidly in the last month). To-morrow I shall still not use the homeopathic remedy but re-introduce the steroid inhaler and use the dilating inhaler if the breathlessness gets the better of me and observe how my body reacts. After a few days I shall introduce the homeopathic and see what happens. I wonder if there are others who have tried a homeopathic thyroid treatment and if they have did they have any reactions, positive or negative.
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