Joint pain, metformin, generally not feeling well

[Ca12]

Hello so I was diagnosed with having reactive hypoglycaemia a few months ago after 3-4 years of symptoms and I no longer seem to be going down in the 2's and more in the 3's. Ill even get symptoms in the 4's after a crash. I go no higher than 16 mmol/L. I still spike and when I do I get burny stingy sensations on my finger tips. I also get this when I crash.

Anyways I've been noticing for a few months now that I've been getting sore joints. My ankles and finger joints. When I hold my phone my wrist starts getting sore as well. Its like a burny swollen type feeling ( they don't appear swollen ) , a feeling of fullness Its hard to explain like aches. My gp has tested my bones from a blood test nearly 2 weeks ago and said that they'll ring if they find anything wrong with them and ive got no phone call.

As well after eating something that'll cause my blood sugar to spike I will get a mild diarrhoea and it isn't pleasant.
I try my best to stick to diet I've been gave and its miserable and I'm miserable ( and I still feel awful ) constantly and I suggested metformin to my gp and she said it would be a possibility and I was wondering if anyone else has experience with it.

 

[Ca12]

I've also found out someone in my second cousin has RH, was misdiagnosed for years as type 2 diabetic but is now on tablets and 1 injection everyday. I haven't been able to speak to her but hoping to be able to at some stage.

 

[EllieM]

Hi @Ca12 and welcome to the forums.

I'm going to tag @Lamont D who knows a lot about RH but in the meantime can I ask what sort of diet you have been given? I know a number of the RHers here control their condition by limiting carbs....

Once more, welcome

 

[Ca12]

Hi i was gave a low GI diet

 

[Lamont D]

Hello so I was diagnosed with having reactive hypoglycaemia a few months ago after 3-4 years of symptoms and I no longer seem to be going down in the 2's and more in the 3's. Ill even get symptoms in the 4's after a crash. I go no higher than 16 mmol/L. I still spike and when I do I get burny stingy sensations on my finger tips. I also get this when I crash.

Anyways I've been noticing for a few months now that I've been getting sore joints. My ankles and finger joints. When I hold my phone my wrist starts getting sore as well. Its like a burny swollen type feeling ( they don't appear swollen ) , a feeling of fullness Its hard to explain like aches. My gp has tested my bones from a blood test nearly 2 weeks ago and said that they'll ring if they find anything wrong with them and ive got no phone call.

As well after eating something that'll cause my blood sugar to spike I will get a mild diarrhoea and it isn't pleasant.
I try my best to stick to diet I've been gave and its miserable and I'm miserable ( and I still feel awful ) constantly and I suggested metformin to my gp and she said it would be a possibility and I was wondering if anyone else has experience with it.

I've also found out someone in my second cousin has RH, was misdiagnosed for years as type 2 diabetic but is now on tablets and 1 injection everyday. I haven't been able to speak to her but hoping to be able to at some stage.

Hi i was gave a low GI diet

Hi @Ca12 it is good to hear from you again.
And I see you are having difficulties in knowing what to do about the horrible symptoms you are having.
I cannot say what is causing the joint pain, but it does seem to be linked with the spikes
You do have to understand that the symptoms are caused with RH, because of the higher than normal spikes.
The continuous rollercoaster of high and low blood glucose levels is the reason you are feeling rubbish.
I was misdiagnosed with T2 and given a similar diet recommended. It was the wrong diet for me, and I suspect it will be for you as well. In my experience and I convinced my endocrinologist that it was carbs, all carbs, that were a problem, which included low GI, with RH, a carb is a carb! And will spike you, which triggers the symptoms, the high spikes, the insulin reaction, that leads to the hypos.
The idea is to stop the hypos. By stopping the spikes. This what most doctors and most In the health care just don't understand. We are intolerant to carbs. Similar to other intolerance and allergies. I have lactose/dairy intolerance and all my doctors have warned about having dairy, so why is carb intolerance different?
The condition is all about the food you eat.
Someone with RH should not be on insulin, as we are liable to overproduce our own insulin, it is known that RH ers have too much insulin in our blood, when first diagnosed this is called hyperinsulinimia. And if you add insulin resistance, far too much insulin is the reaction to carbs. But the doctors don't test for insulin. Daft ain't it!
I was taken off metformin by my endocrinologist, he said, I didn't need it.
A very low carb diet works, nothing else will.
I've been doing this for a decade now, and I don't have hypos and my fasting levels are just above normal. This is because I don't have carbs. I have so much energy, feel good physically. And I will try as hard as I can to not go back to the horrible symptoms of not being in control of my BG levels.
Continuous BG levels in normal range, will alleviate the symptoms and help with your other health issues.

Do please read the RH forum and threads, and hopefully see that your diet is important to control.

I do not take any medication for my RH.
I take meds for hypertension, that is it!

Best wishes.

 

[Ca12]

Thank you for responding and sorry for not responding sooner. I have not been well since Sunday not being able to sleep at all ( 1-1 1/2 hr max ). Diarrhoea, throbbing soreness below ribs which seemed to get worse every time I ate, was really dehydrated as well. Its not as bad now except for the sleep and diarrhoea. I decided not to see my gp because they're just not able to do anything else for me.
I am still waiting on my 72hr fasting insulin test. I have been waiting since June/July.
I was wondering as well if this could be anything diabetes related ( the RH ), if I should get tested for GAD antibodies, c-peptide

 

[Lamont D]

Thank you for responding and sorry for not responding sooner. I have not been well since Sunday not being able to sleep at all ( 1-1 1/2 hr max ). Diarrhoea, throbbing soreness below ribs which seemed to get worse every time I ate, was really dehydrated as well. Its not as bad now except for the sleep and diarrhoea. I decided not to see my gp because they're just not able to do anything else for me.
I am still waiting on my 72hr fasting insulin test. I have been waiting since June/July.
I was wondering as well if this could be anything diabetes related ( the RH ), if I should get tested for GAD antibodies, c-peptide

I can't remember or reading wether you have had an oral glucose tolerance test.
I ask because it is part of that test especially the extended five hour test to be fitted with a cannula, and along with special blood tests, they usually do a c-peptide and GAD test because of the hypos and symptoms. I would have thought that this as well as an insulin count, would have been done before going onto the fasting test.
I remind you that these tests are done to eliminate other conditions, rather than diagnosis for RH.
You are having it tough, and to my mind, the excessive symptoms you describe are similarities with a horrible reaction to something that has knocked your body, maybe an allergic reaction or an acute intolerance to something, that could be environmental.
The hypo readings could be a symptom of the body's response to it!
I will probably be totally wrong but I think it is worth considering.
However if it was me and you can't eat, sleep and vomiting as well as the diarrhoea I would think about going the the A&E. You cannot go on like this.
Do look after yourself.
Please consider it.

My best wishes @Ca12

 

[flaco rob]

Has anybody been getting lots of body pain joints legs knees and hip pains on metformin I need help I had a cyst in my pancreas they did it biopsy and ever since then I've been getting sugar issues bad they started me on metformin 3 weeks ago 500 now they want me to do a thousand a day I have noticed so many different problems with my legs and my knees and my hips I need help can somebody tell me this is a side effect or anybody's having this same problem please

 

[Melgar]

Hi and welcome to the forum @flaco rob . I see you are asking about Metformin and a possible association with achey joint and body pains’. Did you intentionally post in the Reactive Hypoglycaemia forum ? You may get more responses in the Type 2 forums. Please ignore if you intentionally posted in the RH forum.

 

[ProsperoB]

Hello so I was diagnosed with having reactive hypoglycaemia a few months ago after 3-4 years of symptoms and I no longer seem to be going down in the 2's and more in the 3's. Ill even get symptoms in the 4's after a crash. I go no higher than 16 mmol/L. I still spike and when I do I get burny stingy sensations on my finger tips. I also get this when I crash.

Anyways I've been noticing for a few months now that I've been getting sore joints. My ankles and finger joints. When I hold my phone my wrist starts getting sore as well. Its like a burny swollen type feeling ( they don't appear swollen ) , a feeling of fullness Its hard to explain like aches. My gp has tested my bones from a blood test nearly 2 weeks ago and said that they'll ring if they find anything wrong with them and ive got no phone call.

As well after eating something that'll cause my blood sugar to spike I will get a mild diarrhoea and it isn't pleasant.
I try my best to stick to diet I've been gave and its miserable and I'm miserable ( and I still feel awful ) constantly and I suggested metformin to my gp and she said it would be a possibility and I was wondering if anyone else has experience with it.

Be careful with metformin as it does not suit averybody. I had been on it for years then I saw a new GP and he not only took me off Metformin as it highers the Potassium levels but took me off Candasartin and one othe tablet, replacing it with Jardiance empagliflozin and Clopidogril instead. I noq feeel much better and find it easier to keep my blood sugars down.

(mod edit to remove duplicate quote and comment)

 

[Lamont D]

Usually metformin is prescribed for T2, for a few reasons.
Many posters have reported side effects of the drug.
The make up of the drug does not suit you as you are saying you now get aches and pains, or in simple terms side effects.
You have to report these side effects to your GP/ dsn.
There are other options than what you have been prescribed.

I suffered with my initial prescription of metformin.
I was given the SR version, then the enteric form eventually.
I was taken off metformin by my endocrinologist when I was diagnosed with RH.

Speak to your GP.

 

[Catkysydney]

Hello so I was diagnosed with having reactive hypoglycaemia a few months ago after 3-4 years of symptoms and I no longer seem to be going down in the 2's and more in the 3's. Ill even get symptoms in the 4's after a crash. I go no higher than 16 mmol/L. I still spike and when I do I get burny stingy sensations on my finger tips. I also get this when I crash.

Anyways I've been noticing for a few months now that I've been getting sore joints. My ankles and finger joints. When I hold my phone my wrist starts getting sore as well. Its like a burny swollen type feeling ( they don't appear swollen ) , a feeling of fullness Its hard to explain like aches. My gp has tested my bones from a en fublood test nearly 2 weeks ago and said that they'll ring if they find anything wrong with them and ive got no phone call.

As well after eating something that'll cause my blood sugar to spike I will get a mild diarrhoea and it isn't pleasant.
I try my best to stick to diet I've been gave and its miserable and I'm miserable ( and I still feel awful ) constantly and I suggested metformin to my gp and she said it would be a possibility and I was wondering if anyone else has experience with it.

I could not take Metformin at all . It made me so sick, I thought I was going to die . Alter that I found out that I could not take both Diamicron and Jardiance . Now I am on Januvia..
Metformin is not for everyone…

 

[JoKalsbeek]

Has anybody been getting lots of body pain joints legs knees and hip pains on metformin I need help I had a cyst in my pancreas they did it biopsy and ever since then I've been getting sugar issues bad they started me on metformin 3 weeks ago 500 now they want me to do a thousand a day I have noticed so many different problems with my legs and my knees and my hips I need help can somebody tell me this is a side effect or anybody's having this same problem please

Metformin doesn't suit everyone far as side effects go, -some are quite brutal, as you're finding out- and there are other options out there, both medicinal and dietary. You don't have to be stuck with this is you're in misery.

https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html <-- a low carb diet is likely to lower your blood sugars more than metformin can, and it won't hurt, aside from maybe a headache for a week or two, as your body gets used to lower/normalising blood sugars.

And if a change in diet isn't an option, your doc should have an arsenal of meds available to you. If they don't know that, they should refer you to an endo. Metformin isn't the be all, end all of diabetic treatment. Take heart.

Hope you feel better soon!
Jo