Well done on what sounds like a very fraught, long & lonely journey.
Bravo.
I like your advice above .
When I first got DX'd and I read up on type two, I would over explain things when pushed to eat 'something ' by others.
Now, I just explain my body doesn't handle food 'X' very well, because I'm allergic to it.
Simpler, and most seem to back off .
Fully agree, the simpler approach above would make better sense early on over the advice I see far too often dished out by health care professionals as described by desperate posters, seeking help & information to manage a recent diagnosis of type 2.
And as with your posts & many others I have read, to inform myself of other conditions & those sufferers seeking help after being seemingly left floundering by surgeries etc, it's an all too common problem.
Disbelieved or given outdated dogma that just doesn't do enough to help the patients involved.
Forums like this are just such a godsend.
Offering support & practical help day one
Like miners of old, sieve through enough posts and you're pretty sure to strike gold in amongst the wisdom that others post, regarding what worked for them or how they cope with xyz , I know I did.
In a perfect world, I would have liked the advice given to me at dx TO have included pointing me to THIS forum.
I gained more knowledge & ideas about MY illness than any input from anybody else at DX or since .
And mine seems pretty common condition, sadly.
God knows how those like yourself even begin to cope with something so poorly understood, by those who perhaps should be able to offer better assistance than you seemed to get .
Sounds like anyone suffering from RH would be better served by being pointed to this forum at DX, as well.
Take care.
I know from the replies I get how fortunate I was firstly to find my endo, he did save my life, and his dietician who have me the details of filling in a good diary, the info to lurk on here, and start thinking about carbs and sugar, fruit and some of the obscure information he had to gather himself.
We both learned together, we both discussed possibilities, we suggested things and I learned so much from the tests I was given. Being a very nosey and questions abound, once I found 'here's it was only me to do this, while my endo researched the science. I found
@Brunneria who was unbelievable and steered and guided me through those first couple of years.
Then the drug trial that did work to reduce the effect of first phase but didn't stop the hypo later if the spike was high enough. Altogether six eOGTTs I had. And about a million questions.
I researched high and low in the nether regions of the interweb, including US university papers, studies, but not a lot of research.
They were full of the symptoms and how it differed from other diabetic outcomes and strangely non diiabetic, with hypoglycamia!
But the treatment was very similar to N.I.C.E recommendations for the majority of metabolic conditions.
Over time, I found some of the science, talked it through with my endo, who suggested certain carbs, then dismissed the lot of it. Stating that and making it aware to my endo that doing keto, not only stopped the outcomes but symptoms and of course the hypos. And the proof was in my improving health, weight loss and significant energy levels increased, no brain fog and more. I realised that the
My last appointment about a year or so before covid, he advised me that he didn't need to see him no more, as I had cracked it. I found out by learning why low carb or keto worked and the most important things like intolerance, wheat and lactose, and the rest of the 'ose' to a certain extent.
The basic foods were not only as you say allergic, but were responsible for killing me eventually, if I didn't do keto.
At first it was very similar to a bad accident, it is what it is. You discover how to cope, all the while asking why?
You look for it, but don't understand much. You listen and read and take note of the science and then it turns into why me?
Then you can't get your head around that it's something rare and only you or a few others have this weirdness.
Why me only?
It did turn into a bit of an adventure with the experimental period, testing, recording and hopefully finding the answer. And don't forget, a family, a job, youth football, and Mrs L to support.
Even though she was a lot better able to cope at that time.
Eventually, it became normal(eh!) to just get on with it. And by the time I was doing the horrendous hours of being in pro sport, it was secondary as long as I behaved myself. With the keto only obviously.
covid was very bad for me, I didn't get it, well, not that I'm aware of.
Everything, was different.
anxiety and depression followed, panic attacks, my brain not accepting the whole thing.
No money, lost our savings, more or less everything, just to live.
it was just too much, I had a severe breakdown.
if it wasn't for Mrs L and the kids and grandkids................!
it was all I had to live for
I started eating stupid things, drink and overesting, till my GP have me a severe taking to. Got me in touch with MIND, Age U.K. And I had counselling.
you see, the main reason was my football brain. Yeah, all my life since very young, I have been obsessed with football, footie, togger, (as we say found these parts) not only playing till mid twenties, at semi pro level, then as the kids got older, through the nearby youth club, they got involved in footie, my eldest was goalie, and I took over his team, well, given, as they were left in the lurch without one, and so began my coaching career, I took that lot to a semi final and second in league, then two promotions and a cup final, which we lost, in adult football. I was asked then to help with my youngest lad team, and we did well but nothing brilliant except for four got trials for local clubs. My youngest had four trials but his asthma was against a career even though he was so skilful. He still played five a side till just before covid.
My eldest grandchild had joined his team around seven, and the youth club asked me to coach the lads.
They were awful for the first two seasons but the coaching improved their concept of the game. Everything improved the lads finished fourth, u13s, third and a cup final u14s, second and preventing the team that had always won the league, into third place. By beating them last game of the season. u15s. The last season was marred by a few injuries and a couple of the lads going to a club, playing academy football. Which I was completely chuffed at.
By that time, I was working weekends and couldn't do much else coaching at the youth club.
With being involved in my club, being on the football staff. My brain was aired for football.
It got took away from me, for no reason that I could understand.
My footie side of my brain went completely vacant. There was nothing for it to do.
My assessment for counselling, told me this.
I had to rely on family through the pandemic, when Mrs L and FiL was on the at risk list. Hardly saw the grandkids, most of the time, most of them were working on the front line. Lots of anxiety about the whole lot of it.
Two more lots of months of counselling. And the last lot was I didn't know how to cope and needed the tools to help me cope with Mrs L 's misremembering.
How do I feel?
I'm absolutely fine, okay, better etc.
But Deep down, I'm struggling with daily life. Retirement, being old, as we all get to.
This forum is brilliant.
No other words are necessary.
The majority of those on here with their experience and success are unbelievable.
You have seen the number of those that come into the RH forum. They have their own individual issues.
being not so weird as so rare is quite comforting in a way. Hypoglycaemia is a complex condition, that many specialists reluctantly won't diagnose. A lot of people suffer RH symptoms but are T2 diabetic, the synthesis of both conditions are similar until the hypo happens, an the liver dump doesn't appen, I still can't find out. But it could be, I have surmised that it tries but the amount of insulin produced swamps the glucogenisis or livers reaction to the overshoot in the second phase.
I think I will leave it there, things to do.
Thanks
@jjraak, believe it or not, I look forward to your posts, as they are, very appreciated and friendly.
As always my best wishes, mate.
