Uncontrolled RH - Meds, diet/questions

[Hilarie]

Okay *deep breath*
I'm really wanting to connect to people who have been going through this too. I feel so alone, I don't know anyone who is going through this & never met someone else with this condition. If you have any advice or tips or anything I could do to help manage my RH, I would be so very grateful.

I was diagnosed with RH about 2 years ago but have been feeling it's effects for about 3 years or so. I'm now on my 2nd Endo and still having trouble managing my lows. I've been eating a low carb gluten free diet (gluten intolerant as well) for awhile, it is my current diet. It helps most of the time, but it still has not stopped my lows.

I started taking Acarbose before every meal about 7 months ago. At first it worked like a miracle, I could even eat things I shouldn't like pizza and my sugars would barely spike or move. Now however, I can still get lows from eating a salad w/ quinoa, avocado, veggies and sugar free dressing.

My doc hospitalized me for a few days where they starved me to check for tumors in my pancreas and while my sugars dropped to the 50's, he said my insulin levels were not high. Sooo he is confused as to what is causing all this.

He put me on a low dose of a daily steroid Dexamethasone to try to keep the sugars up and it helped the first few weeks and now even with both meds and eating low carbs I'm still getting lows. Now he wants me to add Metformin into the mix and take it morning and night. I personally want to quit the meds all together. My doc is also trying to get me a CGM Dexcom monitor too since sometimes I don't feel the lows anymore until I'm in the 50's or 40's.

I usually eat peanut butter after I come up from a low to keep it from dropping again and that usually works. Physical activity is very hard for me, walking around after eating is a bad trigger. I used to take dance classes in the mornings before eating breakfast but then I started having lows then too. There have also been a few times where I've woken up low.

I've also had some rare highs. I once treated a low and it spiked up to 300 and came back down really quickly but thankfully stabilized that time in the 100's. Every now and then I get some #'s in the 200's but it's usually only a few times a month. Doc says my A1c is normal and that I'm not diabetic though.

My doc also wants me to take birth control to help regulate my hormones because sometimes during the days around my period I have more lows, have any of you done this? does it help?

All in all, I'm a bit frustrated. I honestly don't want to take medicine for the rest of my life or damage my body further with side effects but I've been working so hard on diet and it just isn't doing it for me. Anything else I can try? Have any of you used a Dexcom for this before?

 

[Biggles2]

Hi @Hilarie and welcome to the forum! You have come to a great place!

I will tag @Lamont D as he has experience with RH. It is late in the UK now, so maybe read some of the great information on the site. Others will be along in the morning with more advice and support.

In the meantime, here is a link to a recent thread on RH:
https://www.diabetes.co.uk/forum/threads/reactive-hypoglcemia.131646/#post-1660689

 

[Hilarie]

Hi @Hilarie and welcome to the forum! You have come to a great place!

I will tag @Lamont D as he has experience with RH. It is late in the UK now, so maybe read some of the great information on the site. Others will be along in the morning with more advice and support.

In the meantime, here is a link to a recent thread on RH:
https://www.diabetes.co.uk/forum/threads/reactive-hypoglcemia.131646/#post-1660689

Thank you so much for the kind welcome, it really means a lot!

I will definitely check out that link as well!

 

[jwongcsp]

Hello Hilarie:
The Mayo Clinic is a reputable medical establishment here in USA. Click the link below to read what they have to say about your condition. Sounds like the best thing to do is avoid sugary drinks and alcohol. Good luck. Still early evening in California.

https://www.mayoclinic.org/diseases...rt-answers/reactive-hypoglycemia/FAQ-20057778

 

[Brunneria]

Hi Hilarie and welcome!

I have RH, with extra special times with PMT, exercise and stress. So yes, your experiences ring a lot of bells for me. I am also gluten intolerant.

For myself, I have found dietary control to be the thing that has worked the best. I gradually reduced carbs (you mentioned quinoa but that was too high carb for me even in tiny portions) until the symptoms stopped. That ended up being extremely low carb. Less than 20g carbs a day. It was great. Such a relief from the symptoms and the worry. The usual advice to eat low GI carbs through the day did not work for me at all.

Then, about 18 months ago I discovered that even tiny amounts of gluten had a strange effect. It would dysregulate my blood glucose for up to 2 weeks, resulting in highs and lows from even small amounts of carbs.

So now I eat strictly gluten free, which allows me to tolerate a few more g carbs than previously. But it took a long time to works out the ‘safe’ amounts.

For you, I suggest you have a carb free day. Just meat, eggs, fish, cheese, green above ground veg. Also butter, any fats on the meat, mayo, etc. And see how you do. No milk, fruit, grains, root veg or similar. If you are vegetarian, choose the lowest carb protein source you can, and eat plenty of it.

It is a way of testing whether your usual carbs (such as the quinoa, fruit and so on) are too many for you and triggering your RH.

Hope that helps!

 

[62Rose]

Hi and welcome, this is such a great place for support and advice. one thing I have learnt is that everyone is different! Having said that I can really relate to a lot of what you have been through and am still working out how best to cope with RH. Keep reading and trying different things and hopefully you will find something to help. It is frustrating when you think you have found the answer and then our bodies seem to change again. Reading @Brunneria’s post reminded me that even stress can cause a low, I had forgotten that! I also find illness, infections etc make a huge difference now. I am waiting be fitted with a 24 hour monitor too so perhaps we can share notes after, although I am in the UK and with NHS budgets as they are I think it might be a very long wait!
I went low carb, high fat in June and it does make a difference to my levels. I hope you find what works for you soon, I tried Acarbose and it was awful!! Not taking anything else until I see results from 24 hr monitor. All the best.

 

[Lamont D]

Okay *deep breath*
I'm really wanting to connect to people who have been going through this too. I feel so alone, I don't know anyone who is going through this & never met someone else with this condition. If you have any advice or tips or anything I could do to help manage my RH, I would be so very grateful.

I was diagnosed with RH about 2 years ago but have been feeling it's effects for about 3 years or so. I'm now on my 2nd Endo and still having trouble managing my lows. I've been eating a low carb gluten free diet (gluten intolerant as well) for awhile, it is my current diet. It helps most of the time, but it still has not stopped my lows.

I started taking Acarbose before every meal about 7 months ago. At first it worked like a miracle, I could even eat things I shouldn't like pizza and my sugars would barely spike or move. Now however, I can still get lows from eating a salad w/ quinoa, avocado, veggies and sugar free dressing.

My doc hospitalized me for a few days where they starved me to check for tumors in my pancreas and while my sugars dropped to the 50's, he said my insulin levels were not high. Sooo he is confused as to what is causing all this.

He put me on a low dose of a daily steroid Dexamethasone to try to keep the sugars up and it helped the first few weeks and now even with both meds and eating low carbs I'm still getting lows. Now he wants me to add Metformin into the mix and take it morning and night. I personally want to quit the meds all together. My doc is also trying to get me a CGM Dexcom monitor too since sometimes I don't feel the lows anymore until I'm in the 50's or 40's.

I usually eat peanut butter after I come up from a low to keep it from dropping again and that usually works. Physical activity is very hard for me, walking around after eating is a bad trigger. I used to take dance classes in the mornings before eating breakfast but then I started having lows then too. There have also been a few times where I've woken up low.

I've also had some rare highs. I once treated a low and it spiked up to 300 and came back down really quickly but thankfully stabilized that time in the 100's. Every now and then I get some #'s in the 200's but it's usually only a few times a month. Doc says my A1c is normal and that I'm not diabetic though.

My doc also wants me to take birth control to help regulate my hormones because sometimes during the days around my period I have more lows, have any of you done this? does it help?

All in all, I'm a bit frustrated. I honestly don't want to take medicine for the rest of my life or damage my body further with side effects but I've been working so hard on diet and it just isn't doing it for me. Anything else I can try? Have any of you used a Dexcom for this before?

Hi @Hilarie
Welcome to our forum.
I have RH and I am not diabetic.
I used to be in the same situation as you.
I used to take advice from so called experts and every specialist who found out what I have still insists on carbs!
We have a few that have been put on Acerbose, but I can't recall anyone who has benefited from the drug.
Other meds have been mentioned but that's doctors for you, I was taken off metformin because it also did nothing except give me wind.

@Brunneria is quite right in saying try a carb and sugar free day or so to see what happens. Also like me, though I'm not gluten intolerant, but I'm intolerant to all grains and dairy. There could be something hidden in your food that you are intolerant to.
For me the worst is spuds! Can't touch em!
Dressing for salads is too much, little things that you wouldn't even think would trigger the lows.
And unfortunately, until you get continuous control, you will still feel awful.
I did the five days fasting test, it was awful, not the test but the hospital!
I have found that fasting regulates my blood sugar levels, I do intermittent fasting, but also, not eating regularly is best.
But until you get near normal blood sugar levels, you may want to eat every three hours or so, until you see regular blood sugar levels near normal after eating.
You do need to experiment with food and test yourself around the meals.
Also portion size is crucial. Eat only a few bites for each meal, enough to satisfy you.

Do read the threads on the forum, it might ring some bells,

One last thing, on this forum we welcome any questions or opinions, we have all different symptoms and different ways of dealing with RH, finding your own personal balance of what you eat and how your body copes with that food is the best way of gaining control.
Having normal blood sugar levels is the way to go, how you do it is the most important. We have a dietary condition, and instead of trying drugs that in most cases don't work,, it should be, dietary control that does work for most.
It is what you eat, is causing this!

Keep asking, keep posting, let us know how you are doing.

Best wishes

 

[iBelle]

Okay *deep breath*
I'm really wanting to connect to people who have been going through this too. I feel so alone, I don't know anyone who is going through this & never met someone else with this condition. If you have any advice or tips or anything I could do to help manage my RH, I would be so very grateful.

I was diagnosed with RH about 2 years ago but have been feeling it's effects for about 3 years or so. I'm now on my 2nd Endo and still having trouble managing my lows. I've been eating a low carb gluten free diet (gluten intolerant as well) for awhile, it is my current diet. It helps most of the time, but it still has not stopped my lows.

I started taking Acarbose before every meal about 7 months ago. At first it worked like a miracle, I could even eat things I shouldn't like pizza and my sugars would barely spike or move. Now however, I can still get lows from eating a salad w/ quinoa, avocado, veggies and sugar free dressing.

My doc hospitalized me for a few days where they starved me to check for tumors in my pancreas and while my sugars dropped to the 50's, he said my insulin levels were not high. Sooo he is confused as to what is causing all this.

He put me on a low dose of a daily steroid Dexamethasone to try to keep the sugars up and it helped the first few weeks and now even with both meds and eating low carbs I'm still getting lows. Now he wants me to add Metformin into the mix and take it morning and night. I personally want to quit the meds all together. My doc is also trying to get me a CGM Dexcom monitor too since sometimes I don't feel the lows anymore until I'm in the 50's or 40's.

I usually eat peanut butter after I come up from a low to keep it from dropping again and that usually works. Physical activity is very hard for me, walking around after eating is a bad trigger. I used to take dance classes in the mornings before eating breakfast but then I started having lows then too. There have also been a few times where I've woken up low.

I've also had some rare highs. I once treated a low and it spiked up to 300 and came back down really quickly but thankfully stabilized that time in the 100's. Every now and then I get some #'s in the 200's but it's usually only a few times a month. Doc says my A1c is normal and that I'm not diabetic though.

My doc also wants me to take birth control to help regulate my hormones because sometimes during the days around my period I have more lows, have any of you done this? does it help?

All in all, I'm a bit frustrated. I honestly don't want to take medicine for the rest of my life or damage my body further with side effects but I've been working so hard on diet and it just isn't doing it for me. Anything else I can try? Have any of you used a Dexcom for this before?

Hi, I'm interested in whether your doctor thought your blood sugar levels were really low during your fast and maybe got back to you with more information?
I did a 3 day fast a few weeks ago at the hospital and had levels in the 50's with two drops to 47. After 3 days it started to go up again in the 60's.
Also, my insulin was normal, like yours. During 2 oral glucose tolerance tests I had hypo's of 40 and 36 with normal insulin. During a 'normal' day I regularly see levels in the 50's. Like you, I don't often feel this (apart from the fact that I've been having invalidating fatigue for over 10 years, which has become my new 'normal'). I don't get blood sugar spikes like you do though.
My endo, who's also guessing about what's wrong, has started me on Metformin which doesn't make a lot of sense. She said I can add Acarbose if it's not helping me enough.

 

[Lamont D]

Hi, I'm interested in whether your doctor thought your blood sugar levels were really low during your fast and maybe got back to you with more information?
I did a 3 day fast a few weeks ago at the hospital and had levels in the 50's with two drops to 47. After 3 days it started to go up again in the 60's.
Also, my insulin was normal, like yours. During 2 oral glucose tolerance tests I had hypo's of 40 and 36 with normal insulin. During a 'normal' day I regularly see levels in the 50's. Like you, I don't often feel this (apart from the fact that I've been having invalidating fatigue for over 10 years, which has become my new 'normal'). I don't get blood sugar spikes like you do though.
My endo, who's also guessing about what's wrong, has started me on Metformin which doesn't make a lot of sense. She said I can add Acarbose if it's not helping me enough.

I would ask your endocrinologist to find a specialist in these types of conditions because I believe she is guessing and going by the usual meds route which don't work for most people with Hypoglycaemia.
I have heard of Hypoglycaemia that don't have hypers, they don't spike but level off till the low starts, you go hypo.
It can be controlled by eating more regularly, small bites every two to three hours, but it must be low carb.
Keep testing, see if you can find a spike early than a half hour or even a quarter of a hour, it could be glucose dumping.
Metformin, I don't get it either!
Acerbose does not work, it won't help with the hypos, it will still happen.
Hypoglycaemia is treated more successfully by dietary constraints!

Best wishes

 

[kokhongw]

So you had low glucose, low insulin...how about your ketone level?