More re T3!: thyroidpatients.ca/2019/01/... - Thyroid UK

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More re T3!

DippyDame profile image
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thyroidpatients.ca/2019/01/...

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DippyDame profile image
DippyDame
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10 Replies
SarahJane1471 profile image
SarahJane1471

nice one 👍 this includes all the evidence of studies. Definitely one for saving with the latest research

Charlie-Farley profile image
Charlie-Farley

Thank you Dippy

Its what we know, but pretty damning when comment comes from over the Atlantic. I think the word clinical should be replaced with financial - it would be less disingenuous.

the phrase “when clinically appropriate” (disingenuous)

How about the phrase “when financially appropriate” (more to the point)

Bearing in mind most doctors do not know how to interpret blood tests and come out with the 'red flag phrase' NORMAL, its an up hill battle from the start. I find the biggest stumbling block for me in the early days of diagnosis was not realising just how little knowledge the average GP is practicing with. They are literally flying by the seat of their pants, treated like mushrooms by NHS. Kept in the dark and fed on do-da. They are the unquestioning foot soldiers, held within a system that allows no dissent. We know well enough what happened to those who dare to speak up. Hounded and repeatedly dragged before the GMC.

DippyDame profile image
DippyDame in reply toCharlie-Farley

Agree...and I don't see anything changing in the foreseeable future.

I'm not sure that many of "them" would be able identify "clinically appropriate" in any case!

It is beyond grim!!

McPammy profile image
McPammy

Brilliant. Thank you for posting this.

I’d been on mono therapy levothyroxine for over a decade and had lots of trouble. Now I’m on combined therapy levo and lio I’m like I was back in my 30’s, energised and healthy. I’m a very poor converter. It took over 18 months of terrible symptoms when I crashed to finally be prescribed T3. Gosh it was a game changer. I just couldn’t believe that the NHS would not or could not help me back then. I felt abandoned. I lost my brilliant job too. They did wait over a year for my return to work but I could barely walk for 18 months. I now have little faith in the NHS regarding anything. Even my 3 times spent in hospital during those 18 months has horrified me at the way I was treated even by nurses. I can only put it down to the fact that they had no clue what was wrong with me. I was put on the wrong ward in my opinion,cardiology, only because my heart rate was 37bpm. It was too low T3 that’s all. It could have all be avoided if they’d have given me a 3 month trial in the beginning of T3 but the endocrinologist wouldn’t. Then I was sent down many blind alleys, wasting so much NHS money and my time and life. Shame on the UK health system indeed!

DippyDame profile image
DippyDame in reply toMcPammy

Most of what you say resonates with me....it's madness!

Had my thyroid problem been diagnosed in my 20s I'm totally convinced I would have been spared the very challenging decades that followed.

I struggled to function on a basic level.

Now, in my late 70s and having researched and revealed my problem I'm left with a few issues that I just have to live with....but on T3-only I now function reasonably well.

The GPs currently in my surgery all know about, and "respect", my decision to self medicate with T3....in that I am fortunate. They are very supportive re my other medical issues....chronic uti being the biggest, which I'm convinced is the consequence of decades of low cellular T3. They haven't argued against that!!

The endo I saw,....a very pleasant man but sadly clueless. It rapidly became clear that he would not improve my failing health

But, yes, the impact on health, family, career, friendships, social life etc has been enormous and I'm hugely grateful to my long suffering husband....without his support I doubt I'd be here now.

I'm sure there are many, many others who have not been so fortunate and that saddens me....it is unforgiveable.

Huge thanks goes to a group of experienced and knowledgeable members on this amazing forum who pointed to the way out of a dark, lonely and miserable place.

Thank you everyone....you know who you are!

And forgive me for being a tad obsessive as I rant constantly about the importance of T3!!

Take care McPammy

Charlie-Farley profile image
Charlie-Farley in reply toDippyDame

Oh Dippy

This is a real punt but have you tried taking D-mannose? I suffered with urine infections for years and used to have antibiotics on repeat. Then I peed the GP off (long story ) so she decided to remove my prescription so I would need to have a full blown urine infection every time before I would get treatment. That would have meant at least a week suffering possibly damaging my kidneys, which was the concern that led the previous GP to put me on them in the first place.

Anyway, she accidentally did me a favour gave me the kick up the arse I needed to find another solution. So you can get a loose powder preparation, some pretty heavy duty pills or capsules which I find the easiest.

The ABs used to give me a dose of thrush and that paved the way for another urine infection - they fed into one another like a vicious circle.

I tried the D-mannose and they worked and once adequately dosed with levo I have not had an infection since. I do occasionally get a bit of tingle so just take D-mannose for a few days and hey presto - no urine infection. Unbelievable. Also not had to take ABs in last 5 years or so and my overall wellbeing has improved. There are loads of savvy young ladies who have produced testimonial videos on YouTube. I have no idea how I fell upon them but I vaguely remember ferociously Googling!

DippyDame profile image
DippyDame

That is very kind Charlie-Farley

I've had a whole raft of treatments and tests over many years including D-mannose, Hiprex ( with vit C to raise acidity) ,cranberry extract, Vagifem and a number of different antibiotics in different doses over different lengths of time. Thankfully no thrush.

I had a catch up with my GP ,this morning and now revert to prophylactic treatment of 2 low dose antibiotics (cèfalexin and amoxycillan) alternating every 2 months along with Hiprex.

It's only about a year ago that the NHS recognised Chronic UTI as opposed to acute UTIs. The late Prof Malone-Lee did extensive research into CUTi, his book is very helpful.

I gratefully take on board what you say about D-mannose so trying it again sounds like a good move!

i'm also about to increase my T3 again. So, hey, ho...

Nothing ventured... a "kick up the arse" noted.

Many thanks!

Charlie-Farley profile image
Charlie-Farley in reply toDippyDame

oh Dippy makes me so sad what people have endured due to medical ignorance. I feel indebted to this forum for sharing their wisdom and helping others- me included.

DippyDame profile image
DippyDame in reply toCharlie-Farley

I was watching a news report last night giving an update on the women suffering with mesh implants and waiting ( endlessly and in agony) to have them removed.....another medical scandal.

Take care.

Charlie-Farley profile image
Charlie-Farley in reply toDippyDame

😱 medicine is sliding backwards and gaining momentum. One has to wonder how far back it will slide before the medical profession does something, or if they can even be bothered.

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