Hi,Hi everybody,
I have been lurking on this forum for a few months now whilst waiting and waiting for appointments to come about !
I am sure I have reactive hypoglycaemia, I had some seizures over Christmas and I just haven’t felt right since having the seizures.
After a couple of weeks stint in hospital, they very vaguely diagnosed reactive hypoglycaemia but this was without the food tolerance test (which I didn’t have in the hospital, even though they told me that I needed one, and I had to wait a couple of months for it to actually happen! I don’t want to go into detail about it too much but honestly the doctors were absolutely useless!) ! Anyhow I have now had the test and I am hoping someone might be able to tell me if I either do or I don’t have this. I have always had reactions to food. I have a severe case of Multiple Sclerosis so everything is always put down to MS and there aren’t many doctors that ever see past this - anyway I will write down my numbers and maybe you guys can decipher this and by the way I think you have a huge wealth of knowledge and understanding and kindness on this forum. I thank you so much in advance, typing is difficult with me because I have severe ataxia with my MS so I hope this all makes sense!
Also I should say how ill I am when I eat food and how I have been constantly dizzy since I had the seizures and nauseous! I am extremely weak after eating and dizzy and lightheaded. I can literally not lift my legs after eating = before I eat I am getting around my house okay, holding onto things for balance. During the food test and all the time I eat I get extremely shaky and I burn up. It would take me a long time to list all my symptoms but I have each of the symptoms with reactive hypoglycaemia. I had the food test in the middle of May but I still haven’t heard anything yet. I really just don’t know what to do!
After reading this forum I have cut my carbohydrates down hugely, otherwise I just don’t know what to do!
I don’t have the exact numbers but I will tell you at the beginning of the test it was around 4.7 I was given the drink and I think the highest it went up to was 6.8 and then within two hours it went down to 2.4 and then slowly started rising again, this happens every day and along with all my symptoms it does seem to me to be a possible RH ?
During the test my insulin level was 58 and serum c 1382 !
Thank you so so much everybody !
For me it’s hazy or sometimes like bright sunlight dancing on rippling water. I can go slightly colourblind too.Hi and thank you Jaylee !
yes my eyes are a big problem I have such blurry vision after I have eaten, ha - and my memory is atrocious so I forgot to mention my whole vision issue !
I do have a blood glucose sensor I have had one for a few months now, generally when I wake up my bloods stay at four point something and I can do a few things and feel better before I eat and then when I do eat - all the symptoms begin ……
thank you!
Hopefully, you can get better feedback from RHers..Thanks again Jaylee !
I have been making notes of my diet and blood glucose numbers since the beginning of the year, after I had the seizures. I did strongly suspect it might have something to do with my blood sugars, as when the paramedics, who came out, took my blood glucose reading it was much higher than I thought it would be because I hadn’t actually eaten anything that day. (Because foods deplete me so I try to get everything done that needs doing before I eat.)
I am going to start entering my foods into the libre app from now on, thank you!
How you describe your vision is a good description of how I see things, but I haven’t had the colour blindness (that I know of) !
Today for example - when I woke up my blood was around 4.5 and then when I am active and after I have done all the morning housework rituals () my bloods go up to 5.5, then after I relax go down to around 4.5 again. So this morning I had some lettuce and instantly my whole body suffers weakness but my blood sugar levels stay around 4.5, today I then had some white fish and my bloods have gone down to 4.1 and my face is very tingly and I feel so much heavier and weaker.
I will soon have some eggs, this usually lowers my blood down to around 3.4 and it is around then that I start feeling too weak and heavy to do anything ! After my sensor turns red I will eventually have some oat cakes, which usually takes my bloods up to around 7.0 and then they go down to between four and five until I eat later which is generally just fish and vegetables. by now I am feeling awful! This is a typical day for me….
thanks again!
I'm gonna apologise because I couldn't get on line before.Thanks again Jaylee !
I have been making notes of my diet and blood glucose numbers since the beginning of the year, after I had the seizures. I did strongly suspect it might have something to do with my blood sugars, as when the paramedics, who came out, took my blood glucose reading it was much higher than I thought it would be because I hadn’t actually eaten anything that day. (Because foods deplete me so I try to get everything done that needs doing before I eat.)
I am going to start entering my foods into the libre app from now on, thank you!
How you describe your vision is a good description of how I see things, but I haven’t had the colour blindness (that I know of) !
Today for example - when I woke up my blood was around 4.5 and then when I am active and after I have done all the morning housework rituals () my bloods go up to 5.5, then after I relax go down to around 4.5 again. So this morning I had some lettuce and instantly my whole body suffers weakness but my blood sugar levels stay around 4.5, today I then had some white fish and my bloods have gone down to 4.1 and my face is very tingly and I feel so much heavier and weaker.
I will soon have some eggs, this usually lowers my blood down to around 3.4 and it is around then that I start feeling too weak and heavy to do anything ! After my sensor turns red I will eventually have some oat cakes, which usually takes my bloods up to around 7.0 and then they go down to between four and five until I eat later which is generally just fish and vegetables. by now I am feeling awful! This is a typical day for me….
thanks again!
Hi again,Hi Lamont !
Thank you so much for your reply and please, don’t apologise! Honestly, I am so grateful !!!!
I had a mixed meal test - a drink ! And I don’t think I’ve had any of the other tests that you have mentioned ! What are the tests I should ask for ? Fasting blood tests usually come back between 3.7 - 5.0, depending on whether I have eaten oat cakes the night before ( if I eat oat cakes, they seem to steady my blood through the night) Anyway doctors didn’t seem worried about the results. It was after at least eight hours fasting!
While I was in hospital I had a body CT scan, which didn’t show anything remarkable, apparently.
The seizures did literally hit me like a ton of bricks - literally!!! Before I had the seizures I was living very independently, going out every day to do my shopping, swimming 500 m twice a week - which made me feel amazing! Also dancing a lot and yoga, I was always doing exercise for maintenance, and I still try to - but the exercise is just draining me now now and it also sends my blood sugars either high or low and I get very dizzy.
I was getting gradually weaker to be honest, a few months leading up to the seizures, but doctors put that down to MS (my actual neurologist is positive the seizures and decline Is not MS related - I had more MRIs after the seizures! They were focal seizures.)
All of my hormone blood results are off the charts - hormonal blood test results being off are always put down to menopause, which is frustrating as I have many deficiency symptoms - like the severe weakness and fatigue!
I have had MS for over 20 years and I have not felt the weakness and fatigue like I do now!
I have always felt worse after eating - a numbness and weakness washes over me after eating, but no doctors were ever interested in this. I have many MS friends affected differently by MS, but not any of them are affected by food like me!
Now my son (grown up son) is doing all the shopping, all the cooking (I was doing my own cooking before) , most things around the house, because I am just so tired and weak!
I think GPs have suspected adrenal problems but my cortisol levels are normal, I was told I would have a ACTH blood test in hospital but that didn’t happen!
Liver and kidney blood tests are all normal.
I have lost a huge amount of weight. I was a healthy 8 1/2 - 9 stone before the seizures, now I am 7.4 - it is awful !
My MMT bloods -
8:25 am - 5.6 - This is higher than usual, I think due to the activity getting to the hospital - Drink -
8:40 am - 5.1
9:10 am - 6.3
9:25 am - 6.8
9:40 am - 7.2
9:55 am - 5.8
10:25 am - 4.2
10:55 am - 2.4
11:25 am - 3.2
11:55 am - 3.7
12:25 pm - 4.6
12:55 pm - 4.3
1:25 pm - 3.8
1:55 pm - 4.0
Through the test I was extremely dizzy and lightheaded and blurry vision and shaking and burning up… I must have got up to pee about 20 times!
And so far today - I woke up and bloods 4.7. When I sit down, it goes down to 4.0. I got up and danced ( ha - I say dancing but it is more like shuffling to music! ) it went up to 5.5 I feel absolutely exhausted after, before the seizures I would never feel this exhaustion, but I knew when I needed to stop, if you know what I mean….
I won’t eat until around midday, because as soon as I eat I feel too ill to do anything but I will update all my foods and blood numbers today!
Oh and I haven’t eaten gluten or dairy since I was diagnosed! The only milk I have had is what is in the mixed test drink !
POTS has been suspected by a doctor, I just don’t have a +30 heart rate every time I stand up, sometimes I do but not all the time and my blood pressure generally drops when I stand up but I think this will be put down to MS… blood pressure is generally low ….
I feel like my whole body is failing me….. maybe it is - I just feel glucose and foods are such a big issue and I need answers from our failing NHS ……
Thank you thank you thank you!!!
Hi again,Hi Lamont
Well as long as you know how thankful I am !!!
I have been keeping a rough and very unorganised record of my blood glucose and foods and symptoms etc.
It’s on my list of things to do -
I want to make a spreadsheet of my foods, symptoms and blood numbers, so I can show an endocrinologist ( if I do ever see one again (?) ) - this might help them help - to be honest I have received more help on here than anywhere so far !
Yes, I know exactly what you mean about the replacements for such things as fat . I am gluten-free and the replacement of gluten in GF products are sugars basically & unnatural processed stuff.
I am wary of fat content because of how it can affect my MS symptoms - I realise fat is essential so I need to find what works for me.
Wow what a learning curve.
I was wondering if you have any blood pressure issues with RH?
I have low blood pressure and am constantly dizzy ! (Both before and after foods) !
Your diet sounds fantastic and so natural ! You are probably the healthiest person in a supermarket, if you do ever go in a supermarket, but it’s wonderful supporting local greengrocers and butchers!
I think anything with 20 syllables in an ingredient list is a big red flag!!!!!
Thanks Lamont !
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