Getting a diagnosis, mild symptoms

[Sarducar]

Hi everyone,
I just yesterday found out RH was a thing and I feel like I tick all of the boxes, it makes so much sense. The only difference I have is the severity of symptoms/diet. I do not eat a low carb diet and I have always treated my hypos with carbs.

Back before I was 10 I realised that if I had a specific type of hunger and brain fog I needed to eat something sugary, and have always snacked regularly, roughly every 3 hours, because if I didn't I would hypo. That awareness and early symptom means I have never passed out, though I have come close twice recently (White as a sheet, shaking, so much brain fog), which prompted a GP visit because I was fed up of not knowing why.

I made the mistake of mentioning diabetes to my GP, despite the fact it does not give hypos when unmedicated, so she tested for that then sent me on my way with a clean bill of health. In the second meeting reviewing blood tests she completely discounted my hypos as 'needing to eat regularly to keep my energy up' despite sounding concerned and acknowledging the hypos for what they were in our first meeting.

I have never done blood glucose monitoring but I am considering buying a kit out of pocket so I can know where I stand for sure.

The only thing making me hesitant is the severity of symptoms, I eat a pretty standard high carb diet, and I have learned to snack between meal to catch the hypos before they manifest. I'll eat at 7, 9, 11:30, 2:20, 3:15, 4:30, 6:00, 9:00, 11:00. (Main meal bold) and this seems to work for me. At night when I don't know when I'll actually sleep, getting to sleep is a whole other issue, is the only time when I am really frustrated by snacking to catch the over correction.I also have to drink a ton and pass a lot of urine which I'm pretty sure is related to blood sugar issues.

I can drink pepsi, I will eat sweets, I have just always done that knowing less than half an hour after drinking pepsi I need to be eating something slower release like a flapjack, and will normally eat something like that at 30mins and 1hr after. I'll also eat sweets, and just spread the amount over an hour or so.

I'm actually a little worried about being hyper often enough for that to be a concern, considering how much this diet makes my blood sugar swing.

 

[JoKalsbeek]

Hi everyone,
I just yesterday found out RH was a thing and I feel like I tick all of the boxes, it makes so much sense. The only difference I have is the severity of symptoms/diet. I do not eat a low carb diet and I have always treated my hypos with carbs.

Back before I was 10 I realised that if I had a specific type of hunger and brain fog I needed to eat something sugary, and have always snacked regularly, roughly every 3 hours, because if I didn't I would hypo. That awareness and early symptom means I have never passed out, though I have come close twice recently (White as a sheet, shaking, so much brain fog), which prompted a GP visit because I was fed up of not knowing why.

I made the mistake of mentioning diabetes to my GP, despite the fact it does not give hypos when unmedicated, so she tested for that then sent me on my way with a clean bill of health. In the second meeting reviewing blood tests she completely discounted my hypos as 'needing to eat regularly to keep my energy up' despite sounding concerned and acknowledging the hypos for what they were in our first meeting.

I have never done blood glucose monitoring but I am considering buying a kit out of pocket so I can know where I stand for sure.

The only thing making me hesitant is the severity of symptoms, I eat a pretty standard high carb diet, and I have learned to snack between meal to catch the hypos before they manifest. I'll eat at 7, 9, 11:30, 2:20, 3:15, 4:30, 6:00, 9:00, 11:00. (Main meal bold) and this seems to work for me. At night when I don't know when I'll actually sleep, getting to sleep is a whole other issue, is the only time when I am really frustrated by snacking to catch the over correction.I also have to drink a ton and pass a lot of urine which I'm pretty sure is related to blood sugar issues.

I can drink pepsi, I will eat sweets, I have just always done that knowing less than half an hour after drinking pepsi I need to be eating something slower release like a flapjack, and will normally eat something like that at 30mins and 1hr after. I'll also eat sweets, and just spread the amount over an hour or so.

I'm actually a little worried about being hyper often enough for that to be a concern, considering how much this diet makes my blood sugar swing.

RH is your pancreas overreacting to a glucose spike. Cut out the carbs, eliminate the spikes, and you won't hypo anymore. What you're doing right now is keeping those up and down swings going, while it's a nice and relatively even line you want. Though you really do need to make certain that that is what happening, so I'm very much for getting a meter and checking every hour, on a typical day, and especially if you feel like you're going low on that day or other days. It's something to log along with your food, and show your doc. @Rachox has some excellent info on meters, because you'll be testing a lot and the strips can cost an arm and a leg if you're not careful.

Anyway, if you dare give it a shot: https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html It's geared to T2's, but it's the same thing that would help RH, if that is what you have. You could ask your doc for an extended glucose tolerance test, but they might not know what that is. Also, if you do have RH, it could mean you make excessive amounts of insulin a lot of the time. After a while that could mean you become insensitive to it and develop T2, so if you're going to dive into this now, all the better. Head it off before it becomes an issue.

 

[Dr Snoddy]

Your choice of food and frequency of eating seems to be creating a perfect storm. Each time you eat carbohydrates the pancreas releases insulin. After the insulin level reaches a maximum there is then a compensatory decrease and an undershoot which triggers a need to increase blood glucose. This then sets of a continual cycle of high blood glucose followed by low blood glucose, essentially too high followed by too low.
A diet with much less carbohydrate and far more protein and healthy fat will allow blood glucose levels to become more stable. This has worked for me. Outcomes include stable body weight and moods -a big improvement!

 

[Lucylemonpip]

Yes, I agree with the others, for you to get a bg monitor. Take a reading just before taking your first bite of a meal and then test 1 hour later, and then an hour after that. Make a note of what you ate and what the figures were. Usually, you need not test 1 hour after the first bite, but at the 2 hour mark, but as your hypos are so severe, I’d initially do it at 1 hr and then an hour later.

Once you have a couple of weeks or so, worth of data, you can take your info to the drs. I’d try and get to see a different dr, as another one may have more knowledge of diabetes and not be so dismissive.

I’d also try the lower carb suggestion. You may well be more satiated with this type of diet, as it will not produce so much insulin and will keep your blood sugars from dropping and spiking. Have a good read of all that is on this website, it’s very informative and has loads of personal knowledge and experience.

 

[Rachox]

Hi @Sarducar and welcome to the forum. First I’ll tag in a couple of members who are particularly knowledgeable about RH, @Brunneria and @Lamont D .


Here’s some info on UK meters, and to be clear I have no commercial connections with any of the companies mentioned. For a meter with cheap strips go for the Tee2 + found here:

http://spirit-healthcare.co.uk/product/tee2-plus-blood-glucose-meter/ with the strips found here:

http://spirit-healthcare.co.uk/product/tee2-testing-strips/

Some members have got a free Tee2 by phoning up to order, with a large order of strips they often throw the meter in for free:

Phone number 0800 8815423

With more expensive strips is the Caresens Dual which I currently use, this one has the advantage of glucose and ketone testing in one machine, it’s to be found here:

https://shop.spirit-health.co.uk/collections/caresens-dual


And to be totally transparent I used to use the SD Code Free from Home Health which has the cheapest strips available. However I found it to be becoming less and less reliable. Here it is for anyone wanting to give it a go, just bear in mind it seems they are replacing it with the Navii, details below.

http://homehealth-uk.com/product-category/blood-glucose/blood-glucose-monitor/

and here for the extra strips

http://homehealth-uk.com/all-products/sd-codefree-test-strips-to-be-used-only-with-the-sd-monitor/

There are discount codes if you buy in bulk.

5 packs 264086

10 packs 975833


Home Health have recently bought out this one too, but I haven’t heard any reviews yet, links to strips and the meter:

https://homehealth-uk.com/all-products/glucose-navii-blood-glucose-test-strips-50-strip-pack/


https://homehealth-uk.com/all-products/gluconavii-blood-sugar-meter-glucose-monitor-starter-kit/

I think @DCUKMod has some discount codes for the Navii strips.


Don’t forget to check the box that you have diabetes so you can buy VAT free. (for all meters and strips)

 

[Sarducar]

Thanks you four!
I needed the impetus to actually do a thing. Because, other than missing a snack or meal being a dangerous prospect I do kinda like my diet. I'm sure a lot of people here are or were in that particular boat. I'll go for grabbing a monitor myself first, so I can get some numbers, and then start a diet change because I'm pretty sure about what they'll tell me,

Thanks for the advice on meters Rachdox! I'll pick up a Tee2 I think. Being not diagnosed with diabetes or prediabetes I don't think I'm eligible for discounts, but a monitor and 100 strips is a perfectly acceptable expense if it lets me monitor the transition between diets.

 

[Lamont D]

First of all, welcome to the RH forum,
Next, the good response from the others is good advice especially with reducing the high carbs that seems to help you with the symptoms. This will help in the long run.
I can't actually give you the answers you might be expecting, there are tests required to get to a stage where you can be diagnosed.
All the symptoms are similar to a lot of conditions. You might actually not be going hypo! Until you start testing you just don't know.
Get a blood glucose monitor and start a food diary. Record every thing you consider that will help you. We actually have a sticky at the top of the forum page, that will give you the information you need to start testing and recording.
After a few weeks, you can show your GP and then depending on your results, he can advise you how to get the tests necessary.

Even if you had some type of hypoglycaemia or similar condition, the normal dietary advice from the doctors is to stop the hypos by eating or drinking every couple of hours. I can understand why you are doing this because it is necessary once the blood sugar rollercoaster ride starts once you have eaten.
It wasn't until I decided to go very low carb and experience with experimenting, that if I don't have a lot of carbs, I didn't need to eat that often, eating the right foods for me, didn't trigger the hyper then the hypo.
Once I found that this was helping with the symptoms, and I wasn't going hypo, the penny dropped.
No carbs, no hyper, no trigger, no hypos!
I now fast a lot, that is my choice, I avoid those foods that trigger the roller coaster ride, I eat a healthy diet for me. I haven't had a hypo in over five or six years.
No symptoms, no hypos!

Keep asking, keep letting us know how you are getting on.

Best wishes

 

[Brunneria]

Hi and welcome @Sarducar

I have RH. Had it most of my life.
Very interested to read your perspective, mainly because the experiences you describe would be what I would experience, if I was regularly eating foods that trigger my RH (in my case, that seems to be a combo of both carbs and gluten).

The life you describe, with constant eating, snacks, drinking, catching things before the blood glucose drops, the hypos, the issues around sleep... well I consider that a kind of living hell. Been there, tried it, don’t want to go back. There are some strong parallels with type 1 diabetes and insulin use, but without the security nets of carb counting and without insulin to counter highs and provide background insulin levels. Also (of course) without several other negatives that come with T1, but are not present in RH.

I wonder if you will find controlling your RH (if that is what you have) as liberating as I did? No more aggro around sleep, hypo avoidance, the tyranny of HAVING to eat... I now eat a couple of proper meals a day and generally forget about food the rest of the time. Such a relief!

If you are as dependent on carbs and snacking as you describe, then I suggest you do a fair bit of reading around going low carb, keto flu, the symptoms of keto flu, becoming fat adapted, and so on. From what I have seen, over and over on this forum and others, the more ‘carb addicted’ we are, the more adjustment we experience when we cut them out - and the greater the benefits.

Something you may also find worthwhile to consider, is that you have years... decades? of putting your body through an endless cycle of carb fuelled blood glucose rises and drops, spikes and hypos. We are not indestructible. Sooner or later, age, lifestyle, other illnesses wear us down, and our bodies become less resilient. over production of insulin can wear out our capacity to produce more. Constant exposure to excess insulin can cause insulin resistance (which has unfortunate health consequences of its own). Regular hypos cause a cascade of reactions in the adrenal glands to produce stress hormones to counter the low bg => stress, fight or flight => knock on effects of stress.

In my case, I ended up extremely close to T2 blood glucose levels, but managed to pull back and now have my blood glucose under control. And that was with a long history of eating lower carb, behind me. If I hadn’t done that, my T2 would have arrived much earlier. my body still has a ‘hair trigger’ stress hormone reaction, and my early morning stress hormone/ dawn phenomenon bg levels are, frankly, ******.

I would urge you, whether you have RH or not, to get things under control as soon as possible, by sorting out the root cause, rather than using carbs to paper over the cracks.

 

[Sarducar]

Thank you all!
I never really considered it to be hell, for me it's been life, all 24 years of it or near enough but now I am seeing a way to get out of the cycle, it's really changing my perspective. I rarely have a proper hypo because I have nice early symptoms with chills and a hunger pang unique to low blood sugar situations. Only twice in the last few years I have needed to properly stop everything and eat, with people noticing I really looked ill because of the hypo, I always figured that wasn't too bad going.

Not knowing why I hypo means I have kept banging my head on the wall with refined carbs, thinking I needed to catch the hypo I'm expecting and refined sugars are a good way to do it. So now knowing why will be really freeing from the cycle, so long as I do actually sort out my diet.

 

[Lamont D]

The reason why I go hypo, is because my body cannot cope with carbs, carb intolerant is the easy way of describing.
After I have eaten carbs, my insulin response to the glucose derived from carbs is very weak, so depending on how much carbs I have (not many) my blood glucose levels soar higher than normal levels should. Because I'm non diabetic, my blood glucose levels before a meal should be in normal levels.
Then, because of the sudden leap of my blood glucose levels (hyper), my brain tells my pancreas to provide insulin, it does, but too much (called an overshoot) this is what causes the hypoglycaemic episodes.
Taking high carbs to treat the hypo, will cause a rebound of high glucose levels followed by another overshoot of insulin. This is the reason why doctors recommend eating every couple of hours. To offset the hypos. They want to treat the hypo instead, like me, I eat not to trigger the hyper, no hyper, no hypos!

Thank you all!
I never really considered it to be hell, for me it's been life, all 24 years of it or near enough but now I am seeing a way to get out of the cycle, it's really changing my perspective. I rarely have a proper hypo because I have nice early symptoms with chills and a hunger pang unique to low blood sugar situations. Only twice in the last few years I have needed to properly stop everything and eat, with people noticing I really looked ill because of the hypo, I always figured that wasn't too bad going.

Not knowing why I hypo means I have kept banging my head on the wall with refined carbs, thinking I needed to catch the hypo I'm expecting and refined sugars are a good way to do it. So now knowing why will be really freeing from the cycle, so long as I do actually sort out my diet.

Of course, I'm saying all this because, it does ring a bell about what I had to do to get a diagnosis. And of course all the symptoms, and yes, it was hell! I call it my hypo hell years.
Control is key.

 

[Sarducar]

So my TEE2+ meter finally came, I delayed a snack by over half an hour while I sorted it out, and my first result was a 4.3, I then had that delayed snack pretty sharpish. On it's own as a single datapoint it's almost meaningless but it still feels good that I felt, and still feel, the early warning signs for me having a hypo, and the meter agreed that I was pretty close. Very validating.

 

[Sarducar]

Update:
Due to work I haven't done regular testing, but I have been able to test when I felt I was having a hypo, and I've been getting 5-7 when I am having my 'classic start of a hypo' symptoms and every other test I have done. After the first time where I got the 4.3. I am still feeding with sugar for lack of other options but I am very confused. I thought I had my answer.

 

[Brunneria]

Update:
Due to work I haven't done regular testing, but I have been able to test when I felt I was having a hypo, and I've been getting 5-7 when I am having my 'classic start of a hypo' symptoms and every other test I have done. After the first time where I got the 4.3. I am still feeding with sugar for lack of other options but I am very confused. I thought I had my answer.

how high do your readings go after eating?

 

[Sarducar]

I'm bad at consistently measuring. Very bad. Today I have a 6.3 an hour before I ate a big meal including carbs. 5.2 at 1 hour after, 5.6 at 2 hour after. My only reading above 7 was after drinking 2 pints of pepsi, and that was 7.1, and I have a 4.3 and a 4.9 as my lowest. My average is 5.5, from inconsistent testing whenever I remembered to.