A Past Post that will touch the nerves/heart of many hypo patients

[shaws]

It is a Last Testament and was sent to Sheila Turner (recently deceased) who ran a help/advice forum similar to this one:

"tpauk.com/main/article/jacq...

[DippyDame]

Excellent idea to post this shaws I really need to re-read this harrowing last testament.

The establishment really need to take a good look at themselves and to reflect on their perceived ability to sweep what they don't like, under the carpet.

A few days ago I watched a video interview with Prof James Malone-Lee a renowned UTI specialist and it came across that UTI patients are having similar experiences to thyroid patients....poor diagnoses and poor medication. He himself has been castigated by the establishment for his pioneering and successful treatment and was forced ( a few years ago) to close his clinic because (basically) he was not adhering to NHS guidelines of standard short courses of antibiotics.

I'm currently trying to follow his protocol with the help of a new open minded GP.

Sound familiar!!

Until the people at the top have the courage to open their eyes, ears and minds to what patients are saying, and to what scientists are saying, then we'll remain in the Dark Ages.

This testament should be writ large in every surgery!!

It beggars belief!

Thank you!

[shaws Administrator in reply to DippyDame]

You're right!

When we consider that many (good and excellent and knowledgeable) doctors are now deceased, i.e. Dr Skinner - Dr Peatfield (who had to resign his licence due to being pursued for doing as he was taught as a student) there are no replacements for these doctors unfortunately but hopefull - especially if endocrinologist reads these comments it will also be a learning curve for them.

WhenI felt very unwell my then GP told me I had no problems and despite him receiving my TSH that stated 100, told me I had no problems - I cried and was also ignorant about anything to do with a thyroid gland but was unaware that all GPs also seem to be ignorant.

[Beau55 in reply to DippyDame]

ah professor Malone lee ❤️ the state of UTI treatment is as big of a scandal as the thyroid you are correct! I love to see it being mentioned here dippy.

I suffered through 12 years trying to get treatment and diagnosis of my chronic uti during my teens and twenties. One scandal and fighting is enough for a life time. Unbeknown to me, I would also have to battle another 5 years for my thyroid and to end up treating myself. Some people are very fortunate to never experience either of these conditions and I think I must have broken too many mirrors in this lifetime to have dealt with both by the grand old age of 28!

Luckily not only has thyroid treatment improved my thyroid symptoms but I went two whole years clear of bladder infections too.

We need a REVOLUTION x

[DippyDame in reply to Beau55]

It now looks as if my thyroid problem has been with me all my life, slowly deteriorating over decades!

The reason. Low cellular T3 caused by a form of Thyroid Hormone Resistance

I also think that low cellular T3 has been responsible for the Chronic UTI I have also lived with for many years ...as bacteria has become embedded in the cells of the bladder.

Almost every cell in the body needs to be flooded with T3 by way of a constant and adequate supply, but since cellular T3 cannot be measured this deficiency escapes investigation and consequently diagnosis and appropriate treatment,

Good old fashioned clinical evaluation, now side-lined and replaced by reliance on numbers, is essential for accurate diagnosis.

We are all different!

I'm now aged 77, self medicate with a supraphysiological dose of T3 and function reasonably well despite the damage caused by decades of low cellular T3.

We do need a REVOLUTION but I doubt I'll see any advance away from the current erroneous fixation on TSH largely based on medic's opinion, towards a scientifically based treatment with the active thyroid hormone T3 at it's centre.

It took me almost 50 years to finally find the answers which eluded medics for most of my life. Rediculous? It's all in my bio.

Your thyroid journey sounds similar to mine.....this should not happen!!

Take care.

[nightingale-56]

Thank you for keeping this Last Testament in our minds shaws . What a pity this is only taken notice of by those that are already 'converted'. It really should be read by Endocrinologists and others who treat us.

[Tythrop in reply to nightingale-56]

Also I wonder why the Endocrinology Establishment don't do a comparative study of people like the deceased, before they end their lives, just to see what high dose t3 would do for them .I bet they could recruit lots of volunteer guides pigs from TUK etc so they could have decent sized cohorts for both the treated and untreated sets of sufferers to make a reasonable study. I take Armour Ndt which I get from.internet as I have lost confidence in the medical establishment .

[DippyDame]

I was prescribed Vagifem ( horrible name!!) by a urologist a good number of years ago ...UTIs persisted after a time.

So pleased to hear it has worked for you

I now think my problem lies in congenital cellular hypothyroidism the result of a type of Thyroid Hormone Resistance (very possibly inherited)....so, low T3 all my life.

It has caused me all sorts of medical problems....including UTIs.

It has taken years to unpick what is going on.

Medics had no idea.

High dose T3-only seems to be the answer.....just wish I'd known this decades ago!!

[FancyPants54 in reply to DippyDame]

Most doctors (outside of HRT specialists) don't prescribe enough Vagifem (there are other brands with better names, but guess what? Vagifem is cheap) which is why it doesn't work.

You can use it every night. Forever. But they like to limit us to 2 weeks or so. I recommend you have a read of the book My Menopausal Vagina by Jane Lewis. Available on Amazon. It's been the lightbulb moment for many women with constant UTI's. I too went through a phase of them. But they stopped for me when I started HRT. Some women on HRT still need oestrogen vaginally and those who are not on HRT can use it safely.

HRT is another area the NHS are blanket crap at!

Here are 2 videos with Jane and the wonderful Diane Danzebrink, menopause councillor. You might find these helpful.

youtube.com/watch?v=uEUWets...(Not working as expected?)

youtube.com/watch?v=c0DH9OW...(Not working as expected?)

[DippyDame in reply to FancyPants54]

Thank you FP...Will watch this evening.....though my menopausal days are but a distant memory!!!

I don't know how some of them can sleep at night.

[FancyPants54 in reply to DippyDame]

It doesn't matter that it's been years since you passed into the menopause stage of life (we stay there forever once we get there, there's no such thing as "going through it"). Bladder issues are closely linked to thinning vaginal walls through loss of oestrogen. Jane says herself in the introduction video that many of her patients arrive in their 60's not having realised what the heck was going on for the past 10 years.

[pennyannie]

Thank you :

So sad but so true :

[FancyPants54]

I've just linked two videos for Dippy, you might find them interesting too. Just for reference to back up your own experience.

[McPammy]

I read this with heartfelt sorrow for this lady. I recognised many situations she’d been through. I had very similar issues with the NHS over years of misdiagnosed consultations and treatments. She is so right in what she has written. Harrowing.

…and it still remains to go on.

Thankfully I went private after finding this brilliant site and was swiftly diagnosed and helped to get well and remain well.

I hope everyone gets a chance to read this fully and pass on to NHS Drs.

Could anything be done to bring this case to the Scottish Parliament and the health minister there. Surely this case could be discussed and something done.

[BiscuitBaby in reply to McPammy]

HiI believe the petition about thyroid care in Scotland has already been brought to the Scottish Government. Their blurb advises that they are committed to improving thyroid care in Scotland and that t3 should be offered for those who have unresolved symptoms on t4 only. I have no idea what happens across the rest of Scotland, but my health board have so far refused to prescribe t3 as the prescription was written by a private no nhs endocrinologist. Their guidelines advise that a12 month trial can be offered under the care of endocrinologist. I have had 2 referrals knocked back by 2 different hospitals as "bloods are normal". I have written to health board to determine how you get said trial if endocrinologist refises to see you. In the meantime I await my appointment with neurology for my diagnosis of functional neurological disorder! My heart goes out to this poor woman and her family. Her suffering was needless. How many others have experienced the same but not been able to put pen to paper.

[Batty1]

ATA is and Evil Organization driven by greed!

[Rocky]

Very sad to read and things need to change, especially trying to get correct blood testing for TSH, T4 and T3. Even when we are given the correct treatment of T3 and Levothyroxine, we are still held over a barrel for our blood testing. Like everyone else on here, I too recognise many of the awful things that happened to this poor lady and happened to me and very sadly are still happening

[annca1]

Thank for sharing this, shaws. It was difficult to read.

[shaws Administrator]

It is very difficult to read but why do hypo patients (some who have to diagnose themselves) or have GPs who seem not to have had any background at all of 'how to diagnose and treat hypothyroid patients' if not recovering on levothyroxine or don't have access to the internet?

[Imaaan]

Heartbreaking. Thank you for sharing

[Regenallotment]

Wow what a woman, she had worked it all out hadn’t she. Thanks for sharing, so much of this is familiar. It has motivated me to try something. I’m going to ask my GP surgery (who run womens health clinics) if there is a thyroid support group (I know there is a local TUK one) and see what they say. They have been ‘open’ to my advocacy so far. The entire surgery would benefit from a group that could share info and create a more positive patient environment in terms of diagnosis and treatment. 🦋💚🦋