Trend in reduction of thyroid meds?

[arTistapple]

There seems to be a growing number of forumites having their medications reduced. Off course it could be I have just noticed this as an issue; as I reach this stage of my own ‘development’. Whilst we have become aware that ignorance is often the cause on the part of the medics, excuse my paranoia but could this be an actual ‘instruction’ from somewhere. Personally I did not like the almost gleeful talk by a certain doctor talking about 20% of people in the UK unnecessarily on thyroid meds. It sounded to me like he liked this idea too much. My friends Mother in the USA, which this guy quoted as getting the figures from (30% in the USA and 20% in the UK was his deduction) had her meds removed (without explanation or advice) and she has rapidly gone downhill with dementia type symptoms and kidney failure. Symptoms many of us experience mildly to more so. I am aware that doctors often feel like they should be doing something, anything, just to be seen to be doing something/anything BUT has anyone noticed this possible trend in reduction of meds recently?

[Gingernut44]

What “certain doctor” was this?

[HowNowWhatNow]

I am definitely noticing a lot of this trend, yes. I don’t remember seeing as many people reporting this say 6 months ago, as I do now.

Is there anyone in Thyroid U.K. who routinely FOIs instructions and practice directions to / among GPs? Or who reads has a password for accessing publicly available GP magazines and circulars and can search recent ones using keywords?

[HowNowWhatNow]

I think the pushback from Thyroid patient orgs needs to be very strong, before it’s too late.

The first step would need to be .. a patient survey?

As we were already in a far from ideal world - thyroid patients - we need more representation than other well-understood and GP-championed branches of medicine.

Which is the All Parliamentary Party Group that discusses and should be aware of thyroid relevant issues?

[arTistapple in reply to HowNowWhatNow]

No idea about All Party Group but having seen some questioning of various committees, it all looks remarkably pathetic and lack lustre. Pretty much like how I feel a lot of the time. Could it even be the “push back” that is assisting them to stick to their guns more and maybe even fighting back by denying us our treatment? How dare we? How blooming dare we? It’s the dismissive way we appear to being treated combined with their ignorance but as if WE are not ‘quite the full shilling’ that I find increasingly irritating. My GP really is one of the good guys but at best we know his hands are tied. However I am beginning to understand how: limited his time is, how limited his knowledge is and from a very junior GP how terrified they can be of the consultants. None of this is giving me any confidence in the ‘system’. In my experience, even under the best circumstances, most people want someone else to do the work necessary to bring about change. It’s a big ask and especially from anyone hypothyroid. I am bristling with it all but I HAD to NOT WORK for years because I knew I was totally unable to be reliable. Still very much of the same opinion. If it was not for the very nature of the illness I am sure this could have been sorted out already.

[HowNowWhatNow in reply to arTistapple]

Very interesting point.

It’s very hard to advocate for yourself and thousands other than yourself when one of the symptoms you get no help with is brain fog, another is tiredness, third is coldness, fourth forgetfulness etc.

I am still very curious about the APPGs, however ineffective they as a system of check / scrutiny are. There must be several whose scope is relevant.