Feeling helpless

[Smartypants79]

I’m really feeling like I’m not getting any support from my doctor.

I’ve recently had a bad Crohns flair and was put in budesonide steroids for 10 weeks, I’d already being going to the doctor before the steroids regarding sweating and fatigue and generally not feeling well!! I begged them to do some blood tests and they included a diabetes test. )when you have Crohn’s everything gets blamed on that.
The HbA1c came back at 55 )I immediately started testing my blood and my levels were between 16 and 23 mainly. My doctor put me on metaformin and organised a fasting blood test 5 days later, this came back at 5.9. I was then told I don’t have diabetes and she took me off medication despite my levels from lunchtime rising to such high levels.
I went to see an endocrinologist privately as was so worried and felt Awful, peeing at night, losing weight. Constantly drinking and serious brain fog.
He diagnosed me with diabetes and put me back in metaformin, since then my levels have been from 5.5 to 10 so a massive improvement and I do feel better when levels are lower.
Today I suddenly started to feel funny, shaking, sweating, feeling hunger and really not well. I tested my levels they were 3.5, I have no idea if this is a hypo? But on eating I felt much better and levels rised. Spoke to the doctor who says it can’t be a hypo you don’t get them with metaformim and dismissed what I told her.. it was not a nice feeling and scared the hell out of me today, I just feel like No one is listening to me, I’m worried I’m not going to get the right support
Can anyone shed any light?
Many thanks
L

 

[bulkbiker]

If your bloods have been running high then when you get a more "normal" level then you can sometimes feel very odd. When I went below 4 for the first time it felt off. However now when it happens I usually just get a slight hunger pang (its usually when I'm fasting). Metformin can cause hypos although its rare.. but I think you were experiencing "normal" blood sugar levels which your body simply isn't used to yet.

 

[Grant1969]

Hi there and don't panic, easy said I know, but, on the outside with little knowledge, it does sound like a hypo and you handled it perfectly, no need to worry too much as long as you remain prepared with testing and sweet things if you start to feel strange again, prick,test,action. Personally I've found Drs to be dismissive as well giving the impression of uncertainty when it comes to diabetes, let alone type variants, some still haven't heard of type 3c. Just try to remain calm and be the boss of your condition cos it's the imperfections that make you so special.

 

[JAT1]

A read of 3.5 on my meter is low. If I go below 3.0, I'm panicked, shaking, heart pounding out of my chest, massive head ache, cold. I treat immediately and wait 15 minutes for it to have effect. About every 3 hours between meals I have a less than 15 gr carb snack to avoid hypos.

 

[kitedoc]

I’m really feeling like I’m not getting any support from my doctor.

I’ve recently had a bad Crohns flair and was put in budesonide steroids for 10 weeks, I’d already being going to the doctor before the steroids regarding sweating and fatigue and generally not feeling well!! I begged them to do some blood tests and they included a diabetes test. )when you have Crohn’s everything gets blamed on that.
The HbA1c came back at 55 )I immediately started testing my blood and my levels were between 16 and 23 mainly. My doctor put me on metaformin and organised a fasting blood test 5 days later, this came back at 5.9. I was then told I don’t have diabetes and she took me off medication despite my levels from lunchtime rising to such high levels.
I went to see an endocrinologist privately as was so worried and felt Awful, peeing at night, losing weight. Constantly drinking and serious brain fog.
He diagnosed me with diabetes and put me back in metaformin, since then my levels have been from 5.5 to 10 so a massive improvement and I do feel better when levels are lower.
Today I suddenly started to feel funny, shaking, sweating, feeling hunger and really not well. I tested my levels they were 3.5, I have no idea if this is a hypo? But on eating I felt much better and levels rised. Spoke to the doctor who says it can’t be a hypo you don’t get them with metaformim and dismissed what I told her.. it was not a nice feeling and scared the hell out of me today, I just feel like No one is listening to me, I’m worried I’m not going to get the right support
Can anyone shed any light?
Many thanks
L

Most of the side-effect details I could find on the web about Metformin mention low blood sugar.
And a BSL of 3.5 mmol/l is considered hypo by most criteria.
If you consider that your blood glucose meter has a possible error range of +/- 15%, your reading could have been between 2.975 to 4.25 mmol/l. And eating is the way to solve the problem at least in that instance.
The trouble may be that your doctor has never experienced anything like a hypo and has not read the fine print that says hypos can happen when taking metformin (not commonly but it is listed). Hypos are as ghastly as you describe and you managed it admirably. And as @bulkbiker mentioned your body may have adapted to the high BSLs and the 3.5 mmol/l is so low in comparison.
I always remember someone saying that" pain is what the patient says hurts". So your doctor needs to understand that you experienced, quite unrehearsed, symptoms of a hypo. Side effect profiles prove that hypos are a possible side-effect of Metformin and that if one looks at the Home page of this site, say under Type 1 and type 2 diabetes sections, the desirable BSL ranges are quoted and hypoglycaemia as well. In some jurisdictions below 4 mmol/ is regarded as hypo, in others less than 3.6 mol/l.
If your doctor is recalcitrant, hopefully there is a better one close by!!

 

[Jaylee]

I’m really feeling like I’m not getting any support from my doctor.

I’ve recently had a bad Crohns flair and was put in budesonide steroids for 10 weeks, I’d already being going to the doctor before the steroids regarding sweating and fatigue and generally not feeling well!! I begged them to do some blood tests and they included a diabetes test. )when you have Crohn’s everything gets blamed on that.
The HbA1c came back at 55 )I immediately started testing my blood and my levels were between 16 and 23 mainly. My doctor put me on metaformin and organised a fasting blood test 5 days later, this came back at 5.9. I was then told I don’t have diabetes and she took me off medication despite my levels from lunchtime rising to such high levels.
I went to see an endocrinologist privately as was so worried and felt Awful, peeing at night, losing weight. Constantly drinking and serious brain fog.
He diagnosed me with diabetes and put me back in metaformin, since then my levels have been from 5.5 to 10 so a massive improvement and I do feel better when levels are lower.
Today I suddenly started to feel funny, shaking, sweating, feeling hunger and really not well. I tested my levels they were 3.5, I have no idea if this is a hypo? But on eating I felt much better and levels rised. Spoke to the doctor who says it can’t be a hypo you don’t get them with metaformim and dismissed what I told her.. it was not a nice feeling and scared the hell out of me today, I just feel like No one is listening to me, I’m worried I’m not going to get the right support
Can anyone shed any light?
Many thanks
L

Hi @Smartypants79 ,

Your syptoms & meter backing it up to a degree suggest a hypo.. As an insulin user of 42 years myself. That's my experience. What you did regarding treating your episode was the right thisg.
But try not to over do the carbs
Can metformin drop you into a coma? I doubt it, (whilst it's advisable on insulin to shoot first then ask the questions.) you did have an uncomfortable experience which would have been a bit of a shock to the system..

If you have any more? Log them (it's advisable to log your bloods & what you eat to help you HCPs help you.) & see your Endo...

 

[Smartypants79]

Thank you all for your replies, they are very helpful and thank you for taking the time to respond.

Everything you say makes sense to me and I think Like you say they have been high for a while so 3.5 was low for me, at least of if happens again I won’t panic and will just test and eat accordingly. Thanks again you’ve helped a lot
Regards