Will the treatment of Thyroid Disease ever improve?

[Lora7again]

I really think it will not but I am hopeful that we could make a change by complaining to the NHS and our local MPs because they have to take notice at some point.

[DippyDame]

Government has already been petitioned in both Holyrood and Westminster.

I totally agree....they need to listen, but appear to have deaf ears and/or shockingly poor comprehension.

I guess it will be a long haul.....meantime patients continue to become ill because of poor diagnoses and inappropriate medication.

A scandal of monumental proportions!

[MichelleHarris]

A scandal to add to the likes of doctors promoting smoking, prescribing thalidomide medications and knowingly giving people with haemophilia, new mothers and babies blood infected with HIV whilst screening ‘safe sex’ asverts on TV and then their own GP’s not disclosing their infection for years therby giving time for loved ones to become infected.

[SlowDragon Administrator]

Dr Peter Taylor has written that there's significantly increased interest in T3 treatment and research.

It's not an accident that there's just been launched 5mcg and 10mcg T3 tablets for NHS prescriptions

Price of 20mcg T3 is falling too, though cost continues to be significant hurdle

Post code lottery must end

More widespread problems seem to be literally thousands of patients left on very inadequate dose of Levothyroxine. Complete incorrect over reliance on TSH

Full Thyroid and vitamin testing needs to be recognised as essential for managing this complex disease

[LAHs]

I believe it will. I think that as we (patients) generally become well informed about thyroid matters and start to self medicate via adjusting our own dosages to those which fix our problems, start supplementing those vitamins and minerals in which we are deficient - and then get better, I think doctors can't avoid to take notice.

I believe this because three of my doctors now have left me alone to fiddle with my own dose and take the medication which makes me well (NDT) rather than the one (LEVO) that they would prefer me to take. They just quietly leave me alone, they do not argue with me nor try to (even gently) change my mind. The proof of the pudding is in the fact that I am very well, so what I am doing works and has worked for about ten years - and I am still here.

So, it might be a bit slow but I think change has started.

Another thing which will shine a light on our problem is the epidemic of thyroid problems. Docs cannot have hundreds of patients all complaining of the same thing (this pill isn't doing it for me, I feel very ill). Eventually someone will concentrate on the problem and come to the realisation. Personally I think the cause is the increase in the electromagnetic fields we are now subject to 24/7 - but that is my own personal theory, you may call me a nut case if you want. But that's the cause, not the solution. The solution is out there - the availability of T3 and it's price, we just have to keep telling them.

[Hidden in reply to LAHs]

"...three of my doctors now have left me alone to fiddle with my own dose and take the medication which makes me well (NDT) rather than the one (LEVO) that they would prefer me to take. They just quietly leave me alone..."

WOW!!!

[Hidden in reply to Hidden]

The more you complain, the more likelihood of this happening. Make sure to send your GP a copy of any complaints you send to anybody else such as the CCG, your MP or even the Dept of Health.

[Musicmonkey]

Also contact your local Healthwatch. This watchdog organisation has recently become interested and is collating details of patient experience nationally.

Some branches are a bit slow to heed the directive from Healthwatch's UK's head office, but don't give up!

[Lora7again in reply to Musicmonkey]

I have just done so and will wait and see what reply I get if any.

[Angel20]

All the Endocrinologists have a protocol to follow depending on the thyroid issues you may have. They do not have anything else to offer basically. I do certainly agree that not enough tests are conducted and therefore are very eager to hand over anti-thyroid medications a fit for all or surgery. We live in the 21st century and yet not enough research is being done to come up with a better treatment that will ensure the patient feels well and hopefully goes into remission quickly as we know Graves Disease is not curable.

Thyroid Disease currently it is not a focus for them nor are they educating people what it is until a person either has Graves Disease or Hashimoto's Disease etc.

Meeting the endocrinologist for the first time. Be prepared do your homework know your stuff. Ask what you want to see happening e.g. all the tests ultra sound scans etc must be conducted. There is no fit for all. If they don't do it, go elsewhere, private if necessary.

The GP also follow the standard protocol however you can ask to have extensive testing before seeing the Endocrinologist.

Just a thought

[Lora7again in reply to Angel20]

I have no intention of ever going to a NHS Endocrinologist again after my last one offered me counselling for overdosing me on PTU ... I dread to think how I would have ended up if I had followed his instructions to keep taking the PTU with a TSH of 9! I have no confidence in the NHS when it comes to the treatment of thyroid disease. I have said this before, I did work for the NHS for many years on A & E,in the Hospital Pharmacy and in Medical Records and my husband was hospital manager so I do know all about the NHS. I don't know why they want to keep so many women and a some men so ill because of guidelines... Don't they realise they might save themselves a lot of money if they started treating people who clearly have thyroid disease? or can't they be bothered? That is what I would like to ask Matt Hancock but I really don't think he is interested .... It is a pity someone in his family would not get the disease but then like Michael Gove's wife Sarah Vine they will probably be given NDT and better care than any of us.

[Angel20 in reply to Lora7again]

This is the reason I have seen one endocrinologist over one year as I don't trust them. I go with my gut feeling right now I do not feel comfortable as they cannot offer me anything else other starting me on carbimazole pff. I will do my own blood tests privately and take it from there.