In search of private endocrinologist

[LucyP84]

Hi, I have had RH for as long as I can remember but was only diagnosed around 5 years ago. I have had lots of tests but the cause remains unknown. I have now adapted my diet and have my hypos generally under control. However, I recently developed early onset cataracts whilst pregnant. My ophthalmologist and endocrinologist cannot agree on the cause but it has been suggested they are due to fluctuations in glucose. I feel I need more advice to ensure that my glucose levels are acceptable and not fluctuating too much and causing me health problems later in life. Does anyone have a good endocrinologist that they might recommend? I am prepared to pay privately but I want to see someone who is an expert in RH if at all possible.
Does an expert doctor in RH actually exist?

Thanks very much!

Lucy

 

[Lamont D]

Hi, I have had RH for as long as I can remember but was only diagnosed around 5 years ago. I have had lots of tests but the cause remains unknown. I have now adapted my diet and have my hypos generally under control. However, I recently developed early onset cataracts whilst pregnant. My ophthalmologist and endocrinologist cannot agree on the cause but it has been suggested they are due to fluctuations in glucose. I feel I need more advice to ensure that my glucose levels are acceptable and not fluctuating too much and causing me health problems later in life. Does anyone have a good endocrinologist that they might recommend? I am prepared to pay privately but I want to see someone who is an expert in RH if at all possible.
Does an expert doctor in RH actually exist?

Thanks very much!

Lucy

Hi @LucyP84, and welcome to the forum.

I will pm you with my endos, name and where to find him.

However, it does sound if you're coping pretty well with your RH!
You didn't mention if you have a glucometer or cgm, so that you can record or see how your BG is doing.

You did mention pregnancy, congratulations, I have read that symptoms of RH are exacerbated throughout pregnancy, but what do I know? I'm a fella! We will cope with every situation and dietary control is the best treatment.

I have also recently been diagnosed with a very small start of a cataract in my right eye and I do believe that because of the years, hypos, rollercoaster BGs were doing to my health, as well as accelerating my eyesight issues, I have to wear varifocals.

my endo, also couldn't find a cause of my RH, but having researched the best papers and university study, the likely cause would be a bacteria in my gut, called helicobactor pylori! Wether it's true of not, I don't know not does my endo care! He has seen how I'm coping and is happy with that!

I can't predict the future except that if you don't control your BGs, you will develop conditions and your general health will suffer. More likely to get T2 diabetes, and liver, pancreas and kidney issuesandand always the risk of continuous hypos!And

I think that covers it! Do have a read in our forum and find out what others are asking about and you can ask me anything, you are struggling with! (Not female things!)

Best wishes

 

[LucyP84]

Hi thank you so much for your reply. I do have a monitor - I self fund the libre 2 although I can’t afford to wear it all the time - it has been so useful to find out what foods affect my blood sugar most.

I wonder if you can tell me what my blood sugar should look like? It rarely goes above 8 now and so long as I snack before bed I no longer have the night time lows. With my diet altered I rarely have lows in the day either so yes I think I have it well under control. Sadly, this was not the case though until the last 12 months - I read a great book which helped so much. Sadly it has come a little too late for my eyesight which deteriorated very quickly throughout my last pregnancy.

Is there an ideal range I should try to stay between or is it more about the speed of the spike? How much should it go up and down - what does a normal persons blood sugar do?

I have had three babies in the past 6 years and I really struggled with my RH whilst pregnant and breastfeeding.

I’m sorry to hear that you too have a cataract starting. It is reassuring to hear I am not the only one though- my current endo really disputed that my RH could cause a cataract but I was sure it couldn’t be just a coincidence. I hope yours stays stable for as long as possible.

I would really appreciate the name of your doctor, thank you.

I have found the threads on here very helpful so far. Thank you for your helpful response, all the best
Lucy

 

[Lamont D]

Hi Lucy,

because I'm totally carb intolerant, and even a few the of carbs will spike me!
I am in or just above normal levels as much as possible, this control allows me to have fewer symptoms and keeps me healthy!
My body is healthier by not eating healthy carbs!!
I have been doing very, very low carb for most of the time since diagnosis and a food diary since 2012!
Doing keto maintains energy levels, no brain fog, no hypo and obviously helps you lose weight

Hi thank you so much for your reply. I do have a monitor - I self fund the libre 2 although I can’t afford to wear it all the time - it has been so useful to find out what foods affect my blood sugar most.

I wonder if you can tell me what my blood sugar should look like? It rarely goes above 8 now and so long as I snack before bed I no longer have the night time lows. With my diet altered I rarely have lows in the day either so yes I think I have it well under control. Sadly, this was not the case though until the last 12 months - I read a great book which helped so much. Sadly it has come a little too late for my eyesight which deteriorated very quickly throughout my last pregnancy.

Is there an ideal range I should try to stay between or is it more about the speed of the spike? How much should it go up and down - what does a normal persons blood sugar do?

I have had three babies in the past 6 years and I really struggled with my RH whilst pregnant and breastfeeding.

I’m sorry to hear that you too have a cataract starting. It is reassuring to hear I am not the only one though- my current endo really disputed that my RH could cause a cataract but I was sure it couldn’t be just a coincidence. I hope yours stays stable for as long as possible.

I would really appreciate the name of your doctor, thank you.

I have found the threads on here very helpful so far. Thank you for your helpful response, all the best
Lucy

, if you need to!

Even though, we have had kids and subsequently grandkids, that does not mean I'm an expert in the development of our progeny!