We should write our own guidelines for the treatment of thyroid disease from the patients perspective!

[Hashi_since_age9-1988]

Just finished writing an email to the secretary of the BTA complaining about their guidelines for the treatment of thyroid patients and thought why don't we write our own guidelines and have them put up on the thyroid uk website!

What would your main guidelines be?

Mine would be

First line treatment: take 5-10ug T3 with enough T4 to maintain the TSH within an optimum range of 0.5-2 rather than a normal range of 0.3-4.5 (or even better a combination of NDT plus T4)

[greygoose]

For Hashi's people, TSH should be suppressed and dose decided on symptoms plus FT4, FT3 - but even those blood tests shouldn't be regarded as...

Started to write this and my brain shut down! Can't remember what I was going to say next. lol But that'll do for a start.

Grey

[Hansaplatz in reply to greygoose]

Hi. Do you have any links to studies that talk about TSH suppression? My endo seems overly concerned about my increase in meds suppressing TSH (she let me have more T3 as part of my T4/T3 replacement therapy but if it comes back suppressed they'll retract that increase no matter how I feel) and I know I'd heard having it suppressed could be better for those with Hashi's but I've been unable to find medical sources to present her with info on that.

[greygoose in reply to Hansaplatz]

Personally I don't, no, but I know that quite a few people have. I suggest you start a seperate question and I'm sure you'll get lots of info about it.

Seems to me that this is a new concern - or maybe just a British one. I've been taking thyroid hormone replacement for 17 years and for most of that time my TSH has been suppressed. No-one here in France has ever expressed any concern about it. And I'm still alive! lol

Grey x

[Hashi_since_age9-1988 in reply to Hansaplatz]

I tried having a supressed TSH and I would say I felt worse. Dizzy, muscle twitches pains and weakness. Breathless etc

[Hidden]

So what about NDT containing Thyroglobulin Antibodies and being potentially harmful especially for people with Hashimoto's ? I find the whole discussion and the article quoted here very upsetting. I just started NDT and now I am really anxious. It took so much effort to make first step and start taking it and now I find anxiety provoking information about NDT having potential to harm thyroid... Is it true or is it a Big Pharma propaganda..

[greygoose in reply to Hidden]

Well, it wouldn't surprise me in the least if it were Big Pharma propaganda! I'm Hashi's and I've been taking NDT for 7 years. The doctor who prescribed it for me has Hashi's himself and also takes NDT. If you feel well on it, I really wouldn't worry about it. But what article is quoted here? Have I missed something?

Grey x

[Hashi_since_age9-1988 in reply to Hidden]

NDT contains thyroglobulin but not antibodies. What article are you talking about? The BTA guidelines?

[NBob]

I have thought about this a lot. NICE guidance is the only guidance that doctors have to have regard to. NICE itself says that guidelines are not compulsory. Any other body can produce guidelines. The BTA is a private organisation that has written its own guidelines on lab tests. This private organisation has collaborated with other private organisations such as the Royal College of General Practitioners to write the infamous statement on hypothyroidism. This document is not a guideline but a simply a statement with no supporting evidence. It is perfectly acceptable for patient support groups to produce their own guidelines. The more supporting evidence that is included the better and the more like NICE guidelines the better.

There are already about 10 quality books on this topic that say roughly similar things and represent a responsible body of medical opinion.

BUT they are not in a format that GPs or Endos take seriously and (more likely) they use the book format as an excuse to not read the valuable information inside. (its just for profit and all biased quackery)

In my view, either TUK or TPA or both should write or pay for some guidelines on the diagnosis and management of thyroid disorders. If they do it is essential that the guidelines are written in a manner that the establishment will take seriously.

NICE has produced guidelines on writing guidelines (!)

nice.org.uk/aboutnice/howwe...

which would help for "our" guidelines to be taken seriously. However in order to meet those standards and that format, it would take quite a long time to do that. It entails

deciding what will and will not be included (scoping)

forming a guideline development group with real experts Drs S, D-P and M come to mind.

Then they have to agree on what will be in the guideline.

Then some poor soul has to actually write it with all the evidence referenced. There is loads of evidence to reference. I simply don't have time to do it myself and I suspect that many other members don't either.

Then the draft goes out for consultation for stakeholders to comment on the draft guideline

The comments are assessed and valid points acted on

Then a full guideline with a quick reference guide is published.

In my view, the best option is for TUK and/or TPA to fund a medical writer to write these guidelines in the NICE format and then mount a huge publicity campaign to bring it to the attention of GPs, Endos and the GMC. But this costs money.

[helvella Administrator Thyroid UK]

My view is that the first part of the guidelines would need to concern itself with definitions.

For example: Hypothyroidism being a state in which cells of the body are not getting sufficient thyroid hormone inside them.

At one level, who cares why? Whether you are not getting the hormone into your cells due to some form of resistance, or your brain is not telling your thyroid to produce enough makes little difference to the individual cells! Of course it makes the world of difference to investigation and treatment.

But we really need to move the focus away from the thyroid itself and towards the hormones.

There are, of course, very important disease issues which are and should be thyroid-focussed such as nodules, goitre and cancers.

And what is Subclinical Hypothyroidism? Existing definitions vary but the critical issue in my view is whether symptoms change it from being subclinical?

And they would need a whole section on time of day issues - a TSH test at 07:00 not being likely to produce the same result as one at 17:00.

Rod

[deskplant]

My thought on this is yes. We need guidelines. We need them written to cover the GP and diagnosis experience and not just symptoms and treatment. When I first became ill with hypothyroidism I had no idea what it was, how I'd got it, what caused it. So for example was it autoimmune, primary or secondary? It all matters.

I also found out I was taking a medication for life as the women in the pharmacy were talking about me in front of me. Before that I thought that taking Levothyroxine would be like taking antibiotics and I'd get better. It's no way to find out you have a life long illness.

So for my two pennies, it should cover

-Diagnosis

-Advice and guidance of living with the illness

-Symptom management and guidance on additional morbidity including things like mental health dysfunction

-Testing and results

-Treatment options

-Advice and guidance on long term care management

-Technical information on the chemistry and biology of the condition in its various forms and technical data on the medications

-Additional data such as yellow cards and forums like this one which patients can connect to

-Petitions etc -- I don't see why guidelines should skip on patient and patient group activism

You don't need to put them all in one booklet but you should include the data as a set of interconnecting booklets.

Just my thoughts on this

Mxx