Lorraine Cleaver's journey to be diagnosed

[shaws]

This is a past post that new members may like to read. When when she recovered she went to the Scottish Parliament and was able to change attitudes. One of the members of the Parliament herself had hypothyroidism.

thyroiduk.org/about-thyroid...

[FancyPants54]

What happened about all the Scottish Parliament stuff? Did anything good come of it? How did Lorraine cope when Dr Skinner died?

[DippyDame in reply to FancyPants54]

She became very disillusioned

facebook.com/thyroidpetitio...

[DippyDame]

First of 2 pages re T3 prescribing in Scotland...2nd page in next post

Letter

[DippyDame]

2nd page of letter.

Sadly I don't think much has changed.

I self medicate!

Letter

[FancyPants54 in reply to DippyDame]

Nothing then. We are abandoned.

I'm under a private endo now, but still unsure where to go from where I am now. New bloods last week ready to see him again, not sure when my appointment will be. I posted earlier this week asking for views, but didn't get many responses from combo treatment people. Once I started T3 my T4 has dropped a long way. I currently feel worse than before I started adding T3. I can barely walk. My legs are painful and jerky. My gait feels weird and I walk really slowly and can't go far at all. I loved to dance and ride and walk before. Now I have to find the closest spot to the supermarket and only go round in order for the things I need. No deviation.

If you have a minute, could you have a look at my last post and see what you think I should do next? I have increased my Levo by 25 for the past 2 days, but I have little faith in that.

[humanbean]

I found the page for the Thyroid Petition in the Scottish Parliament Archive website.

archive2021.parliament.scot...

It didn't show up when I searched via the Scottish Parliament website, it only showed up when I searched via my web browser with the petition code (PE1463).

In my opinion, this is one of the particularly interesting letters sent about the petition to the Scottish Parliament :

archive2021.parliament.scot...

It is described as

PE1463/GGG Scottish Government Letter of 19th February 2016.

It contains the "evidence" for not using T3 in thyroid treatment.

I did some (very) limited investigation of some of this evidence when I found it. Although I don't remember which paper it was that did this, there was one where patients had some Levo taken away, and were given some T3. The patients got lots of adverse effects. The reason for this was fairly obvious when I checked out the original paper...

The researchers had taken away X mcg of Levo from patients and had replaced it with X mcg of Liothyronine. So, they reduced dose in some cases by (for example) 50mcg T4 and replaced it with 50mcg of T3. No wonder there were adverse effects!

[diogenes Remembering]

The effective death of the Scottish Petition by Lorraine Cleaver was I regret inevitable. I accompanied her on one presentation to the committee. I found some sympathy and recognition of the problem from several MSP's attending there - with an impassioned plea by Elaine Smith who is a T3-taker. The basic problem is that the MSP's themselves are amateurs in tackling this problem, and are easily outflanked by the medics who like Porterfield, parrot the perceived status quo. The medics in this field, when challenged, draw into a threatening circle of refusing to countenance changes unless they themselves have taken part in the studies supporting such changes. Given that the Porterfield letter merely repeated the unfortunate fact that trials for T4/T3 combination or NDT are effectively useless through faulty design, and therefore do not merit change to present procedures, we can be sure that mutual ignorance of present day work is rife, including those who have misguidedly undertaken these trials. As I've said many times before, the underlying irrational stance is taken that, though the individual is admitted to be as such, at the same time that individual is diagnosed from a statistical collection of subjects, as if anywhere in the range covered by those subjects is considered suitable treatment (directly clashing with the first statement of individuality). Why medics can't see this dilemma for what it is I cannot understand.

[shaws Administrator in reply to diogenes]

Thank you diogenes. I was under the impression, listening to the debate, that if people are not improving on levo that they need an option and that a trial can be given of T3 or NDTs to feel at they are so much better on it.

Just as they've already done to withdrew NDTs - through utter lies even though it saved lives from 1894 and was the only replacement up until Big Pharma wanted more profits. They certainly get that if levo isn't restoring the health of those hypothyroid patients.

What can be done to change those who make these decisions? To remove their thyroid glands should be the first step and given no thyroid hormone replacements initially.

[humanbean in reply to shaws]

Sadly, shaws, advocating murder isn't really something anyone would take seriously, and removing thyroids without hormone replacement would be murder. Although I do sympathise with your opinion.

If we really wanted to get someone to do a trial to find out what it means to be hypothyroid and untreated we would need (preferably male) volunteers to take anti-thyroid drugs like carbimazole for a few weeks. But it would be considered to be entirely unethical too. ***Sigh***

[nightingale-56 in reply to shaws]

Just as I was treated (or not) shaws , after I had a sub-total thyroidectomy (9/10ths removed for Graves). Initially, after the op, I was given 25 mcg Levothyroxine during the rest of my pregnancy, and then after the birth of my daughter (doing fine) in June 1978, for a further six weeks. It was then stopped until 1997, when it was finally restored to 75 mcg and never went beyond this amount. When this was started I recovered somewhat in about 3 months, but still leaving a lot to be desired.

I self-medicated with T3 from 2013 until 2018 when I started to take WP Thyroid. Eureka! This was my answer, but short-lived as this was stopped in September 2020 and I have been on Erfa since then, which is not quite as good for me.

[shaws Administrator in reply to nightingale-56]

That's the problem for many hypo patients and it is either they're not happy on their dose/replacement hormones due to doctors (especially the 'experts) knowing little and not realising that we, the patient, need an optimum dose (i.e. a dose that relieves all of our clinical symptoms). The 'powers that be' who obviously don't have a problematic thyroid gland restrict (mainly women) to levo alone and have now withdrawn the oldest thyroid hormone replacements NDTs and - like you - many patients only improve upon a specific name or are prescribed too low a dose or patient is still symptomatic.

Males, too, need to trial options as well as females.

They've withdrawn all NDTs regardless of their safety from 1892 up till the present day and the very original life-saver, as before that patients just died. So with NDTs people had restoration of health from 1892 onwards and still do today but for the majority of hypo patients they are not offered this option which should be available but only upon the Endocrinologist say-so. The ''experts' unfortunately are not the experts to restore all patients health and wellbeing.

Those who do fine on levothyroxine and we are aware that many do but there's is a section of the human race for whom it is a waste of time.

This is an awful mistake but I assume they were just awaiting some excuse to withdraw it, just as they did with T3 - to ignore patients and they should be reminded we are 'flesh and blood' not mannequins/models in a shop window (no flesh/blood).

[DippyDame in reply to diogenes]

"Why medics can't see this dilemma for what it is I cannot understand".

"can't see" ...or, simply refuse to see/accept what is staring them in the face because they risk being seen as wrong and therefore losing face.

The offer of a few weeks trial on T3 is most often too little over too short a time....but "they" can then say the patient had the opportunity but it failed. Job done, we told you so! Not worth trying again.

It took me many months of trial and error before I reached anything approaching a therapeutic dose. That possibility, rather than a quick fix, probably has them running for the hills.

If patients fail to recover quickly then patient compliance is (sometimes) suggested...not wrong diagnosis or treatment

The battle, it seems, is about well established power and financial clout and very little to do with "first do no harm". It beggars belief!

Little wonder Lorraine became so disillusioned, she, and her supporters, deserved a much better hearing....not to be ultimately swept under the carpet.

Sorry, I'm ranting again!!

[shaws Administrator in reply to DippyDame]

The most shocking story I read was 'Tears Behind Closed Door' by Diana Holmes.

[Localhero]

It’s great that Lorraine managed to get better with the help of folks on this community. I must admit, reading the story on the main website, I was hoping for a “happy ever after” story for thyroid patients in Scotland too. But, alas…

[shaws Administrator in reply to Localhero]

I definitely thought that too but I assume doctors will have to follow their 'guidelines' otherwise they may lose their livelihoods.

So it would be beneficial to all who have dysfunctional thyroid glands to have the opportunity to state to the Organisation how we should be diagnosed and treated, after all it is us who are suffering and, theoretically, we should not be searching the internet for advice and should be offered alternatives if levo doesn't suit us.

The 'Organisation' has withdrawn a number of helpful (for many people) options i.e. NDTs (saved lives from 1892 onwards and being made from animals' thyroid glands are more suited than synthetic) or adding some T3 to T4 (liothyronine to levothyroxine) or T3 alone.

[Localhero in reply to shaws]

I totally agree shaws

It’s a complete scandal that treatment is not personalised and is all driven by “normal” blood ranges. Equally, that things that could help - as you say like NDT and T3 - are so difficult to come by.

Another thing that really annoys me is that I have been a tax payer all my life till the last two years and so expect my medical care to be paid for by the NHS. I thought that was the social contract I signed up for. However, I am currently paying for both T4 and T3 medication in addition to blood tests, endo appointments etc. (Long story short: GP refused a recent request for a repeat T4 prescription because a blood test they’d done for purposes other than thyroid showed my TSH predictably low.) Thankfully, now that I’m going it alone, I’m starting to feel a lot better and am hugely grateful that I have had the resources and “f&£@ you” attitude I have. But I’m so aware that many people, especially women, do not have access to the options I currently have and that just feels so wrong.

[shaws Administrator in reply to Localhero]

Do we have to chain ourselves to the railings around the BTA as was done by females in order to be allowed to vote?

How could Dr Skinner, Dr Peatfield, Dr Lowe and others restore patients' health where no other medical personnel could, yet all were pursued for so doing, causing immense strain upon them who probably knew more than the whole associations together.

hormonerestoration.com/

Not one medically trained person could diagnose me - none were endocrinologists but I think they just wanted money, money, money. If what they stated was not wrong with the patient they never got their monies restored for getting a wrong diagnosis. Obviously did not know one clinical symptom.

hormonerestoration.com/