Thyroid e petition request: Hello, I... - Restless Legs Syn...

Restless Legs Syndrome

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Thyroid e petition request

Pooh10 profile image
10 Replies

Hello,

I hope you don't mind me posting this on your forum (I can delete if necessary). I'm trying to promote a UK e petition created by Thyroid UK below. Please sign and share on social media or other if appropriate. Many thanks

The reason why I have posted on your forum is that thyroid problems can so often be an associated factor in so many conditions e.g. high cholesterol, fibromyalgia, depression, anxiety, food intolerance, absorption issues such low vitamin B12, vitamin D, iron and more, chronic fatigue syndrome, fertility problems, weight problems, sleep issues, other auto immune disorders and many more.

Please help and if you agree sign and share (Facebook, Twitter, etc) the e petition below.

Thyroid sufferers really need your help.

Anyone can succumb to Thyroid disease although it mainly affects women. The results can be mild to very severe. It has the ability completely to destroy a person's and their family's lives, e.g. unable to work, infertility problems, restless leg syndrome, relationship problems and severe mental health problems. I could go on.

I myself have lost nearly 15 years to this debilitating disease. Despite all efforts, I've lived in constant pain, experienced extreme weakness, cognitive problems, severe dizziness/vertigo to name just a few symptoms. This made me largely house bound, unable to participate in much of daily life and reliant on others for help. Throughout this period, the NHS only offered me thyroxine (T4 the inactive form of thyroid hormone).

Thankfully, having done my own research, I'm now on the road to recovery having found other treatment options namely, Liothyronine/Triodothyronine (T3 the active form of thyroid hormone) and Desiccated Thyroid (NDT) which contains T1, T2, T3, T4 and calcitonin (the same as a human thyroid).

Many people do well on the conventional treatment of T4 only. However thousands of thyroid patients are suffering unnecessarily. The economic cost to the UK in terms of general and mental health care (including inpatient care), welfare benefits and employment costs of maintaining this narrow approach must be significant and I have little doubt would well exceed any additional cost which a broader choice of NHS medication options would require. So in real terms, although hard to quantify, there would probably be net saving to the Exchequer and NHS.

Lets see if we can make a difference for thyroid sufferers in the UK and potentially globally.

All we need to be heard is 10,000 signatures. Why not help us reach our goal of 100,000 signatures.

Many thanks for you help.

Best wishes

Melanie

epetitions.direct.gov.uk/pe...

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10 Replies
wendy25 profile image
wendy25

There is not enough information on Thyroid, ive had under active Thyroid for 16 years, n still confused about it...

Pooh10 profile image
Pooh10 in reply towendy25

I agree. Have you looked at Thyroid UK and stop the thyroid madness? They both provide some v useful information. I used to have restless leg problems and thankfully since I've changed my thyroid treatment and made sure I'm optimally treated (not just within range) it has now all but gone. Most people need a TSH under 1 and T4 towards the upper end of the range to feel well. It is also important to have your T3 checked along with Vit D, B12, iron, ferritin and folate.

Kaarina profile image
KaarinaAdministrator

Hi Melanie, I am on the Thyroid UK forum as well. :) I have already signed the petition. I have just shared it on my FB page. :-D

Kaarina

Pooh10 profile image
Pooh10 in reply toKaarina

Many thanks :) there is still a long way to go!

Hi, just signed your petition. I've had an under active thyroid for more than 30 years, I never knew there was any alternative to Thyroxine.

My levels often change and therefore dosages are raised/lowered accordingly, however, whatever dose I'm on my TSH is always high - my GP just says "not to worry about it " ( I do of course)

I also had no idea of so many other problems hypothyroidism causes, I have many of the problems you have listed - worryingly :-( it looks like I need to do some research, Geri

Pooh10 profile image
Pooh10 in reply to

Thanks for your support. Thyroid UK and stop the thyroid madness are both v helpful websites. It takes time to understand but the info is v useful. Even for things like when to take thyroxine to get the most out of it etc.

Most Drs v rarely prescribe anything other than thyroxine. I'm currently paying for meds privately and I'm trying to get it on the NHS but it is a long process (I do have the backing of a consultant though, I think it costs more which could be an issue). I could no longer stand the long list of symptoms I had so I felt I had no choice. The improvement has been well worth it.

I hope you feel improvements soon. By the way it may be worth considering putting your blood results on the thyroid forum for their input as it may be helpful.

Avosyl profile image
Avosyl

My daughter has thyroid problems and was surprised at how many of the related problems you mention she also has. So thank you for this i will pass on the link to her.

Pooh10 profile image
Pooh10 in reply toAvosyl

The responses I've written above provide useful starting points. I hope your daughter feels better soon.

My mum is also hypo and is on thyroxine. Her bloods are within range but she clearly has symptoms. It is important that the person is on the right dose and med combo for them.

Sue777 profile image
Sue777

Hi Melanie I have already signed the petition as am a member of Thyroid uk. I am on Levo but it has never helped my RLS and I still have hypo symptoms. Can I ask what meds you are taking for thyroid as I am thinking of seeing a private consultant.

There seem to be a lot of RLS sufferers who also have thyroid issues. Thanks x

Pooh10 profile image
Pooh10 in reply toSue777

Hi Sue777. I currently take Armour which is natural desiccated thyroid and T3 which is the active thyroid hormone. I now have the support of a Professor so I know that it is ok to use. Thyroid UK and Stop the Thyroid Madness websites provide good information. Louise Warvill from Thyroid UK has a list of private dr/consultants who listen to patients and potentially look at different treatment options. It is v difficult to get the appropriate treatment and meds through the usual channel. My mum who is on thyroxine is within range but clearly symptomatic and trying to get better through GPs but they are not keen to alter dose. However, my endo said most people need a TSH below 1 to feel well and T4 towards the upper end of the range. If you remain on thyroxine it is v important to make sure you are optimal and not just in the range. Also certain other factors should be considered e.g. iron, ferratin, folate, B12 and Vit D to ensure you can get the most from your meds. The Thyroid UK forum will be able to help with results, tests etc. I hope this helps and you feel improvements soon. I had restless legs before I switched meds. It used to drive me crazy as I could not sleep. Thankfully i dont have that problem any more.

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