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6 years to get diagnosis!

Hpetal

Well-Known Member
Messages
114
Location
Fife, Scotland
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
cold weather!
Hi folks well let me tell you our story... 10 years ago my husband was very poorly with a bug called giardia, after which he started having "funny" turns, all the symptoms of RH. He also has now been diagnosed with early onset dementia triggered they think by the bug.(he is now 60)
I say our story as I am T2 diabetic and after my husband being ill for 6 years we finally saw an endocrinologist today that confirmed he has RH!!! I told them so ages ago but they said he's not diabetic so basically go away you don't know what your talking about. You would not believe the sigh of relief in that office this morning. She did say he is to have a glucose tolerance test but is pretty sure RH is his problem.
Earlier this year i did try very hard with low carbing but sadly fell off the wagon so to speak :-( Now it would appear to improve hubby's health and well being WE both would benefit from low carbing. It has got to be a good thing right? So how on earth am I going to get him off white bread,cakes,biscuits and energy drinks and sweeties??? He has always been a big meat and cheese man so that is not a problem. Are we doomed to a life of green veg and steak??? haha
 

well if he is a bit dement , you maybe can just not have white bread and biscuits and energy drinks and sweets in your house... must admit my mother and I helped my father that way not to smoke anymore..., and you are right ketone-dieting are thought to slow the frequency of the progress in dementia by some scientists
 
Yes - two weeks of really strict low carb and I might have stepped back in time a decade or more. I am even doing housework!!
My sight is clearer, I have started machine knitting again, and where did all those cobwebs come from?
There is a lot more you can eat than green salad and steak, really - there are so many other options - and people have been developing all kinds of desserts and things which look like bread even - life where you can have cream in your coffee can't be all bad.
 

Hi welcome to our RH forum!
The diagnosis is a relief, ain't it? Knowing what it is, is a huge step to getting healthy again, you will be amazed in the not too distant future if you gain control and very low carb is the way to go. I've never looked back since I discovered that most so called healthy foods are what was making me so ill!
Meat and cheese are a start but there is always an alternative to all those baddies that you won't miss them! Have a read of the low carb forum for ideas and recipes!
Very low carb and staying in ketosis is the only treatment for RH. Exercise will help but nothing strenuous!
If you have any questions please ask.
Welcome again to our unique club!
 
Wow thanks everyone, so nice to find folks that actually understand life's stresses. we are going to Malta for Christmas and New Year so the low carbing should have a good start , we do walk our speedy spanial so do exercise but will definitely do more walking while away. and I will keep you all posted .
 
I think it would be very difficult and extremely lucky to find an endocrinologist who actually recognised the symptoms.
It took me a lot of years to get the diagnosis and tests needed for mine.
If you need information or my understanding of the science, then please do ask.
I had only a couple of others who knew what to do and they steered me through the good knowledge of how to gain real control. I am still learning so much about how my body works and how to get through the useful and useless information that's out there. I have even got my endocrinologist to realise how different to the usual advice us RH ers need to be healthy. We are unusual and really weird! And unique!
There is a great font of knowledgeable people on this forum, so if your stumped or not sure about certain advice, do ask.
Maybe one of us on here can give an answer.
Best wishes.
 
Thank you so much, yes they say knowledge is power and after seeing so many health professionals i did loose faith in ever getting a proper diagnosis. That is why it was so nice to find one who knew so much about the condition. Oh yes I do have a practical question, DVLA driving license...have you informed them? and how do RH ers stand with this?
 
It was the first question from my endocrinologist after diagnosis.
Even though the DVLA hasn't covered the condition, (no surprise there) I have been informed that it would be irresponsible for someone that is experiencing hypos to drive. My endocrinologist said I shouldn't until I had really good control of my blood glucose levels and was certain that I wouldn't hypo! At that time I couldn't!
I don't drive anyway but I'm certain that the condition regardless of choice, the symptoms would disqualify. I think you have to prove or get your doctor to get in touch with the DVLA to inform them of your status.
I would believe that we would be classified as similar to T1s, but I could be wrong!
We did have a gent on here that lived remotely and was querying wether he could use his disabled scooter vehicle!
If in doubt ask your endocrinologist or phone the DVLA.
 
Generally, providing our brain with an alternative fuel source would seems to be the approach to take.

http://journal.frontiersin.org/article/10.3389/fnmol.2016.00053/full
 
6 years for a diagnosis. Whao, I'm so glad that was sorted out. Low carb is excellent, I lost 20 kilos, and have not lost anything when I fell off the wagon... so back on it after the holidays!!
 
Well the New year has begun, we both lost weight in the month we were away and have changed our meals considerably, Hubby had a 5 hour glucose tolerance test and result in.... went down to 3.1 after 3hrs. So endrocrinologist has said yes he is RH and refering on to a dietitian, BUT he has been under a neurologist for 5 years because of memory issues and personality changes, and his team have now diagnosed Alzheimers with Lewy body symptoms of which is the RH. they say there is no treatment and to just take life as it comes. See him again next year! so hey ho. Yes we are trying to stay low carb but hubby is a grumpy git without his biccies.:-(
 

At last a true diagnosis!
The symptoms of RH can influence brain function problems such as you describe, I suffered terribly with anxiety, forgetfulness, anger and rage, and of course brain fog, these have now eased considerably because of the very low carb diet I'm on, it seems the less carbs we have alleviates the symptoms, indeed, the extra energy is so good as well.
Now he has a chance to see how a real dietary change can help him with all his problems.
Let us know how he is doing.
This unique condition needs unique treatment as diet is the only treatment and if you go low enough it is controllable.

Best wishes.
 
Thanks Lamont D I will keep everyone posted. early days low carbing for him, being type 2 myself and low carbing for a couple of months now, lost over 6kg which might not sound much but I am chuffed. OH lost some off his belly but won't get on the scales. So we will see
 
Thanks for the update!
I appreciate how difficult it may be making big changes to diet in your circumstances - it is hard changing at the best of times, and if biscuits are his thing, then that will be doubly difficult.

There are quite a few low carb biscuit/cookie type recipes out there, if you wanted to go that route. A bit more work for you, unfortunately, but might be worth trying.

The biggest hassle with lc baking is getting the ingredients together, but I often go straight to Amazon, as a one-stop-shop.

This kind of thing
https://www.lowcarblab.com/best-low-carb-cookies/
 

Even losing a few pounds can make a difference!
Bet you feel better for it and if he hasn't commented on the weight loss, well there is others ways to make him realise how good you are for him!

Best wishes
 
Lamont D said:
Even losing a few pounds can make a difference!
Bet you feel better for it and if he hasn't commented on the weight loss, well there is others ways to make him realise how good you are for him!

Best wishes
Click to expand...
Flattery will get you everywhere he has noticed my weight loss and says i look good but sometimes i eat something different to him and he says he is not the one on the diet but we will see, little steps....small changes in cooking and portion sizes that he won't notice.
 
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