This is Dr. David
you should see a endocrinology specialist and get blood insulin levels and gastrin levels and cortisol levels to see if these are normal.
This is why i have wrote a detailed response i have had a full evaluation with an endocrinology specialist, blood insulin levels, gastrin levels and cortisol levels all have come back as normal. I have been referred to a dietitian for improvements on my diet and this is where i have been left. The diet is helping but the condition is severe. I cannot miss any meals as stated. This is not curing the condition, it is only coping with it.
have you checked those levels before and after meals.
Yes i have all the reports at home and they are completely normal before and after meals. I have had these tests when i had these symptoms aswell, the abnormality cannot be detected on any test i have had. The symptoms are quite severe as well and it is definitely blood sugar related. If i was to have a sugar drink and sweets now i would have the symptoms within 1 hour. Eating a healthy meal and i can go 4 - 5 hours. So definitely my energy and blood sugar levels are dropping, this has definitely been diagnosed.
I feel very depressed as when i walk my dog on a 3 hour walk i have to have a meal with me. If i do not i will have very bad symptoms if i am to delay a meal.
I really think your pancreas is most likely over producing insulin.
your levels might be "normal"
but they are normal for you
So why when i have a very high sugar snack do i get symptoms earlier. If i eat healthy for instance a sandwich and fruit i can go longer maybe 3 or 4 hours.
it sounds like your brain is very acutely sensitive to sugar level changes in your blood.
Okay well so far i have not determined anything of particular importance Dr David i hope you understand.
are you willing to go to a larger academic medical center for more testing?
I am based in the UK and been told there is nothing further that the Health Service can offer me. I have had diet advice and this is all.
Where do i go to a larger academic medical center for testing in the UK?
I would be willing to do anything to improve my life. How do i get an appointment with the Royal Marsden, aren't they primarily a cancer specialist, do they look into blood sugar disorders as well?
I would seek out a neurologist or endocrinologist at a larger medical center in the UK.
ask for invivo monitoring of your blood sugar levels real time to correlate with your symptoms.
they might be able to write up your special condition and publish it
and it sounds like a rare condition.
they might want to do more research on you for this condition.
do you have any other questions?
London is a long way from me, i am based in Yorkshire, UK, do you know of other larger medical centers that are possibly away from London?
Global Medicals Limited (Leeds Medical Centre) The Medico Legal Centre Neville Street Leeds, West Yorkshire LS1 4BX
how far are you from Leeds?
globalmedicals.co.uk +44(###) ###-####/p>
45 minutes away from Leeds.
However i do not want something close that is no good. It seems i have a serious rare condition and need the best available doctors in the UK?
So my question is the Leeds Center capable of dealing with my requirements. Is it a large medical center aswell?
it is not as large as centers down in London.
Globalmedicals the site you gave me is not appropriate. I have copied the statement from their website. "We are committed as a medico legal agency to provide independent medico legalevidence to facilitate the Courts for the settlement of personal injury claims".
I am not submitting a personal injury claim, so i am not sure why you have provided a link to this company? Can you please advise?
but it might not be large enough medical center to do research.
I think you would be best to go to london.
This is a doctors surgery, so this is not appropriate. You go to a doctors surgery to get referred to a specialist. I am a bit confused.
Westfield Medical is not a medical center it is a doctors surgery for minor illness.
I would go to london.
Barts and The London
they do research there and would be willing to see you about your glucose condition.
If i am travelling 4 hours is this the best place in the UK for this kind of research? Is there anything in Leeds as so far you have not provided anything of any significance.
no, there are no research places in leeds.
Anything away from London?
univ of birmingham
These Universities do not say they look at patients with endocrinology disorders though. So how would i go about contacting them and what would i say?
you can contact the medical staff there and ask for a consultation and evaluation
say that you think you might have a rare glucose sensitivity disorder.
and that you were hoping for medical evaluation and testing.
and ask if they have researchers there willing to do invivo real time blood glucose monitoring and testing before and after meals
and you can show them how ups and downs of your glucose levels can cause your symptoms.
Will they turn me away. As the system in the UK is you get referred by a GP to a specialist. I have been to see an Endocrinologist.
ask your GP to refer you to this birmingham center
saying you could have a rare condition
and you need to be seen at a university setting
for more extensive testing.
My blood sugar levels are fine before and after meals, even-though i have bad symptoms so it is obviously hard to detect what the abnormality is. Do you still think this is a good way forward?
It is obviously like you say a very rare condition, that is proven by 3 specialists impossible to work out a diagnosis.
yes, I think it is a good way forward.
do you have excessive anxiety symptoms?
excessive anxiety or panic attacks could also be causing some of your symptoms as well.
No excessive anxiety symptoms i am a very calm person. Stress free so i do not think this could be causing it.
I am of the opinion it is a blood sugar disorder as i have nothing to worry about.
that is good you don't have excessive anxiety.
try to contact the endocrinology department in Birmingham.
or ask your GP to try to send you there.
good luck to you
let me know if you have other questions.
if done, please leave positive feedback below.
thanks for using JustAnswer.com
I still am not sure about this. It could waste valuable time and i am not sure it will reach the desired diagnosis. I have already seen 3 very qualified specialists in the field of Endocrinology.
Do you know of any Vitamins or Natural Herbs that could help me sustain my blood sugar levels in the meantime. I have heard people take Chromium to help if they have a blood sugar disorder? Is there anything that can ease the pain of this illness for the meantime?
don't take chromium, it is a heavy metal and can cause toxicity.
best thing is to eat a heatthy diet and lots of complex carbs and protein
protein can help keep your sugar levels more stable.
things like greek yogurt, nuts, avacados, whole grains, oatmeal
I have heard Chromium at a low dosage of 200mg is okay and helps people with blood sugar? Are you sure on this?
It may help me i am not going to take in larger doses.
the data on chromium is not proven
you can try it, but I bet it probably won't help
Can it kill me in low dose, what are the symptoms of toxicity?
it could cause serious side effects
Oral intake of Cromium compound may cause intense gastrointestinal irritation or ulceration and corrosion, epigastric pain, nausea, vomiting, diarrhea, vertigo, fever, muscle cramps, hemorrhagic diathesis, toxic nephritis, renal failure, intravascular hemolysis, circulatory collapse, liver damage, acute multisystem organ failure
Right i heard it can make your nervous system hypersensitive, is this correct aswell?
So it can cause burning and tingling etc
it can damage your nerves as well.
I would not take it.
So even a chromium supplement at a low dosage of 200mg which is meant to be safe is not recommended. I think the serious side effects you have listed are for over dosage am i correct or high dosage?
you only need 25-30 mcg of chromium a day.
I have heard that Chia Seeds which are a natual seed added to meals can help with a blood sugar disorder. The soluble fiber helps to stabilize blood glucose levels resulting in steady. A tablespoon can apparently help you stabilize the blood sugar. Is this worth a try or have you heard of serious side effects from Chia Seeds?
This is meant to be a natural ingredient.
chia seeds are fine.
they are a good source of fats.
and can be put into smoothies and salads.
Okay, do you think these will help with the blood sugar fluctuations a bit?
yes, chia seeds and the diet recommendations I mentioned above can help.
So if i go for further testing, do you think there could be a surgery on the Pancreas, that could help the condition? What do you think the outcome may be if i have further testing?
no, surgery on the pancreas most likely will not help.
surgery on the pancreas is very very very difficult to do.
So what is the possible outcome of further testing?
Is it waste of time?
they could find a glucose sensitivity disorder
or they might not.
How is this treated if a glucose sensitivity disorder is found?
they might tell you to continue to try to eat a healthy diet as best as you can.
Is there any diet you could suggest that may help reverse the condition completely. It started for no reason when i was 23, is there a way of reversing this through diet. I have read this online or is this not true?
there is no proven diet to reverse this condition completely.
I have heard that Lipo-Carn, (Alpha Lipoic Acid & Acetyl L Carnitine) supplements may help with a rare blood sugar disorder? Is this worth a try?
those amino acids are fine to try
but are amino acids that you find also in egg whites.
So Lipo-Carn, (Alpha Lipoic Acid & Acetyl L Carnitine) is not toxic these are at doses of 200mg
Is this okay to try without any risks
no, those amino acids are not toxic.
What about taking Vitamin B Complex supplements, these are natual low dosages of vitamins you find in foods. Is this worth a try to help limit the disorder? As there are alot of facts stating that vitamins could help with blood sugar disorders?
excessive vitamin B gets urinated out of your kidneys.
do not take more than 100mg of B6 per day.
Do you know of any Vitamins or Natural Herbs or Remedies that can be added to food, that may help with a blood sugar disorder such as mine. I want to limit the episodes i get during the day.
At the moment it is a struggle having to eat so regular.
Other than what i suggested.
no, vitamins or herbs are not proven to help with your blood sugar sensitivities.
Is there anything that may be worth a try though
As nothing has helped me at the moment
you can try the things we have talked about.
Alpha Lipoic Acid & Acetyl L Carnitine
These are good to try
these are fine to try.
i would start there.
What snacks should i have when i feel my blood sugar levels dropping, if i am away from home and i am not close to a meal?
Ones that will not make the sugar plummet really fast when i am out on a walk for instance.
nuts, seeds, high protein greek yogurt.
Yes but something that can be carried in your pocket. Greek yogurt is not viable.
I am saying if i am on a walk.
beef jerky, nuts,
fruit like apple, high fiber.
What are good options for Breakfast, Lunch and Tea to help me hopefully improve my life with limited symptoms?
Any Cereal, Sandwiches, Tea time food you can recommend
These are for the main meals of the day, 3 meals
high protein and complex carbohydrates.
whole grain cereals.
Any examples it is easy to say high protein and complex carbohydrates, but what are meal examples
Like for lunch what can you suggest?
What about for tea time a meal example?
many good ideas here.
Can eating a good diet high in protein with complex carbohydrates help reverse the disease, or will this just help me manage the condition?
it can help reverse the disease and help improve your symptoms
What sort of drinks can i have with these meals as i cannot have alot of sugar?
Should i have water or weak cordial juice so it is not strong?
best to drink water.
juices are too much sugar.
Alot of water 1 pint brings on the symptoms can water lower your blood sugar levels. Should i reduce the amount of water with meals?
Maybe a small cup of water, rather than large glass
water will not lower your blood sugar levels.
I have a direct correlation that drinking alot of water brings on the symptoms? Does this have any indication of what the condition maybe?
Lower amounts of water and i am fine
no, that would not tell us what condition you have.
You stated that water will not lower your blood sugar levels. However it brings on the symptoms, so could it bring on a blood sugar sensitivity having alot of water
As this is what seems to happen to me
did you tell your doctors this?
No i have not mentioned this
It didn't occur to me, as i limit water and i am fine
So i assume this affects my condition large amounts of water
large amounts of water like gallons and gallons of water can lower your blood sodium levels.
but one pint of water will not affect your blood glucose levels
So what could cause me to have symptoms with 1 pint of water? If i have a cordial juice that is weak with a bit of sugar i am fine. So it seems i need a bit of sugar, and water does not work?
I'm not sure why.
then drink your cordial juice
if that is what makes you feel better.
You state eating well can help reverse the disease, i thought you said it cannot be cured completely? Will eating well just manage the disease rather than cure it? Will having snacks like nuts not help reverse the disease, is it best to stick with 3 meals a day only?
we don't even know the name of this "disease"
your doctors haven't given you a diagnosis.
no one can say for sure what a diet will do or not.
it is always best and healiest for you to eat healthy and high protein and complex carbs
with lots of fiber.
if you are eating a poor diet and high fat foods and high sugar foods, that can be causing your ups and downs of your glucose and dizziness symptoms.
are you not willing to change out of this bad diet?
I'm not sure what you are looking for being "cured"
are you looking to be able to then eat whatever you want to and be ok?
I am wanting to return to when i was younger. I was able to have anything for cereal, lunch or dinner and have no symptoms whatsoever.
I could drink sugary drinks and have no symptoms whatsoever.
Ideally i want to be able to return to this normality, where i do not have to worry about symptoms.
no, you can't go on living being able to drink sugary drinks and be fine.
you can't go back to how you were as a child.
you have to grow up and eat a healthier diet now.
So eating well may or may not be beneficial, but you think limiting sugar is important? However you cannot be completely sure on this?
eating well will be benefiical to your body and your health.
limiting sugar is beneficial.
Unfortunately you have not stated anything that will help me, we seem to be doing round in circles. You have rushed me to provide positive feedback earlier in the conversation and you have stated i should get evaluated by another specialist. I have already seen three specialists so i am not happy with the service at this time. I already have had diet and vitamin recommendations and they are not helping my condition. I am going to get a second opinion from another doctor. I am sorry you have not been able to satisfy me today. I wish you all the best.
you are wanting to go back to eating a high sugar diet and any cereal you want and not have dizziness symptoms and glucose up and down symptoms?
that is not realistic.
you will not be able to find any suppliments or herbs or mineals which will allow you to eat a poor high sugar diet and not have consequences.