Reactive hypoglycemia, thoughts please?

[Katerinax]

Hey!
Well actually I asked the nurse how I go about getting my results, do I contact my gp or call the hospital? And she said 'no the hospital will contact you, you will most likely be brought back in to find out and discuss'? I did the test on the 28th September, so I thought November was a slightly long wait to find out but they haven't contacted me otherwise.

I was only concerned about fastings as from everything I've read and been told fastings above 5.5 are considered prediabetic range. Mine were pretty consistently between 4-5.3 or so until the last sort of week or so. So I found it concerning that they have risen into that range despite ingesting less carbs and sugar. It worries me that I could be creeping towards T2 diabetes with nothing I can do?

Regarding the weight loss, I wouldn't really like to lose any more weight, it is not my goal as I am a healthy weight, I am just trying to control my blood sugars better. I am just worried now as I was expecting things to clear up more now that I am stricter with myself, not rising fasting sugars.

Is it typical to lose weight and experience rising fasting sugars? I never had a bad diet I just didn't control it as much as I do now and I've never been overweight

 

[Katerinax]

Also the nurse didn't give me anything for the hypo during the test, they don't abandon the test unless it goes below 3, on her reader I was on 3.3, but I was in a low for about 1 1/2 hours. After she made me eat toast and coffee before I left which spiked me up to about 10 then back into a hypo lol, maybe not the best thing to give someone with reactive hypoglycemia

 

[Lamont D]

Also the nurse didn't give me anything for the hypo during the test, they don't abandon the test unless it goes below 3, on her reader I was on 3.3, but I was in a low for about 1 1/2 hours. After she made me eat toast and coffee before I left which spiked me up to about 10 then back into a hypo lol, maybe not the best thing to give someone with reactive hypoglycemia

That is the reason I asked, I was the same except I was given lucozade, then a sandwich, and then biscuits, rich tea.
Tell your specialist(?) That you had what is known as a rebound effect from having too much glucose from the toast. Don't forget to mention that you were fasting until the glucose drink and no solid food since the night before.
This would make you more susceptible to higher glucose levels derived from the toast and rebound effect.
With RH, it's easier to stop the hypo, than actually treat one. Why didn't your specialist warn the nurse about the likelihood of hypos.

Keep safe

 

[Katerinax]

@Lamont D Hi! I went to see a consultant endocrinologist about my OGTT. He told me I have reactive hypoglycemia. It wasn't the same doctor that originally ordered the tests. I asked him the results of my insulin cpeptide, he asked if my doctor ordered that and I said he did, he was interested in the results of that. He told me they don't have the results yet. He didn't really give me any information and seemed to not know the answer to any of my questions. I asked what the cause is and he said he doesn't know. Then said the only way to know for sure would be to do the 72hr fast, so I guess they are planning that now.
I asked for a blood checker and he told me it wasn't necessary to check. I asked him how its not necessary when I drop into hypos multiple times a day and need to know what way my sugars are going because preventing hypos is much easier, and I drive all day for my job. He said its not necessary because my sugars won't drop enough for me to 'pass out'. I asked him if he'd ever experienced hypoglycemia because you don't need to be unconscious to experience symptoms that are dangerous enough to cause you to crash your car, for example my vision is one of the first things to do if my sugars are dropping. He told me managing the condition is the way to handle it. I told him I do manage it however it can be very erratic and hard to manage, especially around my period which causes relentless lows regardless of what I eat. How do you expect me to manage it correctly without checking what my sugars are.

He told me I'll know if I go hypo and to eat something. The point is I don't want to let it get that bad! My symptoms don't resolve as soon as I eat something. I'm confused why they don't take symtoms seriously unless you've passed out?

I've had some very sudden and troubling episodes come on while driving I'm just confused why he thinks it's completely unnecessary for me to ever know what my sugars are

 

[Lamont D]

Hi, @Katerinax,

I'm not surprised that your endo didn't have a clue about RH.
It doesn't surprise me that you were refused a glucometer.
It doesn't surprise me, that they may give you a fasting test, because it is another step in the diagnostic test that will eliminate other conditions.
I am surprised that he knows that it is only dietary control is the recommended treatment.
If you get in touch with your endo or his Secretary to write to your GP, asking your surgery to fund a glucometer and strips neccesary. This is how they pay through the NHS. Or you can buy one or a cgm. I got one off my GP, after telling him I am serious about a food diary to find out what is going triggers the reaction. And also get the free prescription because you should be on the register for diabetes. That will give you access to medical checks.
I will tag @Rachox for information on how where you can buy one.
I can, if you are RH, recommend a drug which helps with RH.

The bad news is you might have to inform the DVLA, about your health issues.
My endocrinologist informed me that unless I could provide information that I have good control, I shouldn't be driving.

If you do get offered the fasting test, because it will give you information about how your body works and being in consistent normal blood glucose levels, how you feel and symptoms. Do it!

It made me realise so much.

Best wishes.

 

[Rachox]

Thanks for the tag @Lamont D and welcome to the forum @Katerinax


Here’s some info on UK meters, and to be clear I have no commercial connections with any of the companies mentioned.


HOME HEALTH have the Gluco Navii, which is a fairly new model and seems to be getting good reviews, links to the strips and the meter:

https://homehealth-uk.com/all-produ...ose-meter-test-strips-choose-mmol-l-or-mg-dl/

There are also discount codes for when you come to buy more strips - "navii5" and "navii10" will give you 20% off purchases of 5 packs of strips and 25% off 10 packs of strips respectively.


Then they sell the older SD Code Free, details to be found here!

https://homehealth-uk.com/all-products/codefree-blood-glucose-monitoring-system-mmoll-or-mgdl/

Discount codes for the Code Free strips

5 packs 264086

10 packs 975833





SPIRIT HEALTHCARE have a meter called the Tee2 + found here:



https://shop.spirit-health.co.uk/co...e2-blood-glucose-meter?variant=19264017268793

with the strips found here:



https://shop.spirit-health.co.uk/co...py-of-tee2-test-strips?variant=19264017367097

Some members have got a free Tee2+ by phoning up to order, with a large order of strips they often throw the meter in for free:

Phone number 0800 8815423


With more expensive strips is their Caresens Dual, this one has the advantage of glucose and ketone testing in one machine, it’s to be found here:

https://shop.spirit-health.co.uk/collections/caresens-dual



If there is a choice of units of measurement then ‘mmol/L’ are the standard units in the UK, ‘mg/dl’ in the US, other countries may vary.


Don’t forget to check the box if you have pre diabetes or diabetes so you can buy VAT free. (for all meters and strips)

 

[Katerinax]

Thank you both for your responses! I will have a look at the glucometer options. @Lamont D I am surprised at the different feedbacks from our endo's. Yours saying you would need to prove you have good control to be able to drive, Whereas mine was so unconcerned he didn't even think I should even need to be in possession of a glucometer, despite me voicing my concerns about driving. He just said there is no danger or reason to even check because I won't 'pass out'. Why is it for the same diagnosis one tells you you must tell DVLA and prove you have good control, then another say there is no reason to even be in possession of such a thing that would prove control to DVLA? He gave me no advice in regards to driving and still insisted it wasn't necessary for me to EVER check my blood sugars. I'm confused about it

 

[Katerinax]

Also, would it work to ask them to write to my gp since it was the endo that denied me a glucometer?

Also does having RH put you on the register for diabetes?

And as far as I'm aware they are going to schedule the 72 hour fast, just may be waiting a while

 

[Lamont D]

Also, would it work to ask them to write to my gp since it was the endo that denied me a glucometer?
Do you have a cgm?

Also does having RH put you on the register for diabetes?

And as far as I'm aware they are going to schedule the 72 hour fast, just may be waiting a while

It did for me, because I was denied initially.
Again, your GP should be persuaded to do so, the register is there to provide you with health care to prevent further complications as it is an endocrinologist who has diagnosed you with RH, ask the question, if you were T2 with RH symptoms, because it could happen, deny you the same rights as a patient with another form of metabolic conditions. Again my endocrinologist asked my GP, because of my circumstances.

Of course, it probably will take a while, but there is something you can carry on doing, to continue to discover what carbs you are intolerant to, if not all.

The DVLA has not got RH on its list, but it would look and probably ask your GP or endo, or the government specialist endocrinologist on the symptoms.
Don't forget that this advice was from my endo, who luckily for me, actually recognised the symptoms and got the tests, he was knowledgeable about Hypoglycaemia, he also had other RH patients during my six years with him.

I do think if you are not in control, then the safety of others does come into it.
Having control and a pre driving finger prick test such as T1s do, might be enough to satisfy them.

All this as well as the fasting test will take some time to get you in a position that you will feel really comfortable with being in control, it won't be tomorrow that your health improves to be really healthy again, it is a stressful realisation and even when you have got there where you have not got it on your mind for most of the day.
The big question is why, or maybe how, am I different? Why have I got a condition that is so rare, that doctors don't have a clue, that it is not even taught in a doctor's teaching hospital. And there's a lot of specialist endocrinologists, who don't have an answer. Your body will adapt to being without carbs. Your body will be relieved to be in consistent normal blood glucose levels.
I know what you are going through, I've had a battle and now after twenty years, my physical health is very good because I stopped the Hypoglycaemia.

Do keep us updated, keep asking. Keep safe.

 

[Katerinax]

Hi @Lamont D, just an update. The doctor I previously described has sent a letter to my gp. I honestly don't know what to do with that or think about it.

On the day as I previously described he told me my sugars went to 3.2 (what they caught) it was 2.8 at its lowest on my meter which I compared with the hospital one multiple times and they were the same value. I asked if he was going to diagnose me with something and he said 'yes, it's called reactive hypoglycemia' he then proceeded to deny my request for a blood checker saying I don't need to check despite it being clinically too low to drive, leaving me with no way to know.

Well to the letter he sent to my gp he has written 'possible reactive hypoglycemia' as diagnosis, even though he diagnosed me with it during the appointment. He also lied and said in the letter that I requested a cgm funded by the NHS to which he declined. I did not ask for this as I know they are only licensed to give them to type 1 diabetics.

He has also pointed out in the letter that he told me that it's doubtful my symptoms are blood sugar related??? This did not happen, he told me they are low but I would not 'pass out' in his words. How can he say they are not even related to blood sugar???

He also states he denied my 'request' for a cgm as apparently it is doubtful my symptoms are due to hypoglycemia?

I am so confused, none of this is what was spoken of or said during the appointment, he diagnosed me with reactive hypoglycemia during my appointment and now he is telling my doctor my symptoms are not due to hypoglycemia or even blood sugar related. How can this be?

I know they didn't drop dangerously low but still low enough for any reference I've read including NHS to be in fact, hypoglycemia.

The NHS site says not to even drive if its under 4.4, if it's under 3.5 you are hypoglycemic and should treat it and retest in 15 minutes. But he's saying with 3.2 my symptoms are not even blood sugar related at all?

I really don't even know what to do with this one. I rang his secretary and asked to speak to him to ask him to clarify his letter and misinforming my doctor with conversations that didn't happen. And how he diagnosed me with something then reversed it in a letter to my doctor.

Please do advise I feel so dismissed and misinformed and let down by the way this is being dealt with

 

[Lamont D]

I do believe that your endo is only guessing that you may have RH, it would explain the Hypoglycaemia and it is food related, anyone could put it together, who has had some training with diabetes related symptoms. But to say that it is nothing to do with blood glucose levels is indeed a mystery and total ********!
If a type one, and he drove and had an accident, he would be liable, you are prone to the same Hypoglycaemic ability to suffer from the same symptoms as a T1, I have suffered with black outs and feeling really tired when not in complete control of my blood glucose levels.
Your endo is fundamentally flawed in his advice and his diagnosis.
Also a complete idiot.
It does seem that you will have to fund a blood glucose monitor if you are gonna find which or what is causing the Hypoglycaemia.
The battle for diagnosis still goes on. Don't give up. It took me over a decade to get the tests required for diagnosis.
There is always the second opinion option. That does mean going back to your GP and using your endos lies to persuade your GP to recommend another specialist endocrinologist, who actually knows what he is looking for. The reason is you were not happy with the explanation he gave and has not solved anything.
I have no idea what the situation is in your area, but you have to try.
You have to also ask if it's not blood sugar related, what is it and what treatment or meds, will help with the symptoms?

Keep asking, keep fighting, keep safe.

 

[Katerinax]

@Lamont D Hi again! Oddly enough the past couple of weeks I haven't been experiencing any lows, it still spikes high and drops dramatically but hasn't been dropping any lower than 4.5ish or causing symptoms. Is it common for reactive hypoglycemia to just resolve itself?
I haven't really changed anything I'm doing I just haven't been feeling symptomatic. Fastings are still 6 or above most mornings but I have been feeling okay

 

[Lamont D]

Hi again, the problem your decision making issues are unresolved as is the diagnosis.
I just don't know what the honest answer is.
Off the top of my head and without repeating what I've already advised, and I've noticed you are using a glucometer which is brill.
I would have thought that it may be, but I am probably wrong, is your body is still adjusting to your dietary changes. The imbalance in hormonal response, the insulin resistance, the effects of your intolerance may still hasn't eased enough to stop what ever is happening. Or there has been a change and something else is still having an effect. Again, your gut biotic, hasn't changed or is slow. Having a healthy gut is a part of good control and improvements in hormonal response.
I don't believe that even being in control as long as I have, the experience I had last year, and when I have inadvertently caused a spike and hypo. I don't believe you can be free of the insulin overshoot when you spike to high. Even if you have a drug that helps with the initial insulin response, if you trigger the insulin overshoot you get the symptoms.

@Lamont D Hi again! Oddly enough the past couple of weeks I haven't been experiencing any lows, it still spikes high and drops dramatically but hasn't been dropping any lower than 4.5ish or causing symptoms. Is it common for reactive hypoglycemia to just resolve itself?
I haven't really changed anything I'm doing I just haven't been feeling symptomatic. Fastings are still 6 or above most mornings but I have been feeling okay

Keep asking, keep testing, keep safe.

 

[Katerinax]

Yeah I guess it was probably just wishful thinking lol. I know regardless my glucose metabolism is still not healthy as the spikes and dramatic drops are not normal anyway. Its just been disheartening after my last experience with the endo, he was very much giving off the impression there is nothing wrong with me, especially the notes he sent to my doctor.

As I mentioned before I did originally have an appointment for 31st Dec, then the last endo I saw sent me a cancellation letter and written at the bottom 'further review at the clinic will be subject to the results of the 72hr fast - if required' he also mentioned I wouldn't be back to the clinic unless I needed to be seen after the fast to my doctor.

Oddly I recieved a letter in the post yesterday for an appointment for 11th of January. Naturally I was very confused as it was made very clear I didn't need to be seen at the clinic again. I rang the appointments office to see if I could find out what the appointment was for. She said she didn't know she just told me which doctor it was with. The doctor is the senior endocrinologist, who is actually a diabetic. (I know this because he is my friends endo).
I find it odd that they would cancel my appointment then make another one, I wonder what it is about? the last endo was not great but he still did refer me for further treatment, which I have not had yet, so it wouldn't even be to see how treatments are going.

It is good I have an appointment but I am just curious as to why, would a senior endocrinologist review others endo patient files?

 

[Lamont D]

Yeah I guess it was probably just wishful thinking lol. I know regardless my glucose metabolism is still not healthy as the spikes and dramatic drops are not normal anyway. Its just been disheartening after my last experience with the endo, he was very much giving off the impression there is nothing wrong with me, especially the notes he sent to my doctor.

As I mentioned before I did originally have an appointment for 31st Dec, then the last endo I saw sent me a cancellation letter and written at the bottom 'further review at the clinic will be subject to the results of the 72hr fast - if required' he also mentioned I wouldn't be back to the clinic unless I needed to be seen after the fast to my doctor.

Oddly I recieved a letter in the post yesterday for an appointment for 11th of January. Naturally I was very confused as it was made very clear I didn't need to be seen at the clinic again. I rang the appointments office to see if I could find out what the appointment was for. She said she didn't know she just told me which doctor it was with. The doctor is the senior endocrinologist, who is actually a diabetic. (I know this because he is my friends endo).
I find it odd that they would cancel my appointment then make another one, I wonder what it is about? the last endo was not great but he still did refer me for further treatment, which I have not had yet, so it wouldn't even be to see how treatments are going.

It is good I have an appointment but I am just curious as to why, would a senior endocrinologist review others endo patient files?

The rank of each endo, depends on various things within the study of Endocrinology, as in any organisation, there is a boss and thier subordinates. It is a hierarchy.
And within a hospital a house doctor or intern if a teaching hospital, would be reviewed, even though you seen a endo, he may not understand what is going on due to either specialty or experience, not being too high on the promotion.
The height of achievement is a fellowship or a professorship at a major university.
And to have a medical paper published in the Lancet.
After all that, yes is the one word answer. As your GP referred you to your first endo, your first endo has referred you to your next endocrinologist.
I do hope that I'm right in thinking this.
And I hope you get a satisfactory outcome.

Keep safe and keep asking.

 

[Keatsy1987]

Absolutely brilliant, just getting an endo that hasn't had a RH case to get the tests necessary for a diagnosis is quite open minded of him.

All the tests are fasting, and the OGTT should be at least 3-4 hours long, and definitely not only two hours. Always remember that if you do go hypo during the tests, not to have high carbs to treat the hypo. You want to nudge it up, not spiking again.

Hi Lamont,

How do you "nudge" blood sugar up as opposed to spiking it?

This would be incredibly useful.

 

[Lamont D]

Hi Lamont,

How do you "nudge" blood sugar up as opposed to spiking it?

This would be incredibly useful.

I learned about nudging it up, after an eOGTT. A small bite of low carb will do it,
I use a couple of rich tea biscuits, but if I wasn't lactose intolerant a small chunk of cheese.
The trick is to know when you are going low, and eat something before going hypo..
And not rebound into another cycle of hyper/ hypo.
If you treated a hypo as If you were a T1, what is known as the rebound effect, will almost certainly cause symptoms and another risk of a hypo later on..
Always test yourself at the time of the low, then eat accordingly, then test again fifteen minutes after eating to see If you BG levels are back in normal and a bit later to see if you are going above normal levels..