Finally diagnosed, now what?

[Discovery22]

Hi all,
After struggling with my blood glucose levels dropping for many years (and my GP not referring me) I finally had an extended GTT today and was told I have reactive hypoglycaemia as my levels dropped to 2.7 two hours after drinking the glucose. I’m also being tested for diabetes insepidus and also Pheochromocytoma. The lady said she would report my results back to the consultant. Question is....where do I go from here? Thank you

 

[Brunneria]

Hi and welcome!

Sorry to hear about your diagnosis and all the tests.
You must be reeling!

My personal suggestion would be to avoid making any drastic changes until you have the results of your other tests.
I have no idea whether RH and diabetes insipidus can be confused with one another, but insipidus doesn’t often get discussed on the forum, and I know very little about it, except that it is very different from the t1, 2 and 3s that we normally discuss.

As a result I would hate to make any suggestions that might clash.

What advice/instructions have you been given so far by the consultant?

 

[Lamont D]

Hi all,
After struggling with my blood glucose levels dropping for many years (and my GP not referring me) I finally had an extended GTT today and was told I have reactive hypoglycaemia as my levels dropped to 2.7 two hours after drinking the glucose. I’m also being tested for diabetes insepidus and also Pheochromocytoma. The lady said she would report my results back to the consultant. Question is....where do I go from here? Thank you

Hi and welcome to our forum,
I had to wait until I saw my specialist endocrinologist before I knew that the diagnosis I was given, had just been a step in the tests that I had to have. So, again, I would wait till you seen your endo.
But there is a couple of small things that would help your doctors, if you haven't started a food diary, do so, because it will become valuable when you are going through the discovery phase, of finding which foods you are intolerant to. These will be usually carbohydrates.
The other thing , if you haven't already is you will need a good glucometer, this is part of having a food diary as well.


Another part of eventually getting a diagnosis, is understanding why and how you keep having episodes of Hypoglycaemia and how to avoid having these episodes.
There is plenty of knowledge on the threads in the forum.

Have you had any other tests?

Keep asking, our experience can help you.

Best wishes and welcome again.

 

[gollymax]

Hi everyone I have just been reading all the events and comments on RH, I now believe that I’m having the same problem suffering with RH. I’ve been a T1 for 58 years and have always had good control with my diabetes and HBA1Cs have been between 5:6-6.7
For many years I’ve been testing my BG up to 10x per day and when I spot a drop in BG (4.0) I have 12 grams of carbs and recheck when the alarm goes off on my BG meter 15mins later. I’ve been on an insulin pump for the last 9 years and previously injecting up to 10x per day with Novo Rapid.

Over the last 3 weeks I’ve noticed that my BG levels are dropping rapidly just as I eat, whilst I’m eating & after I’ve eaten.

I have noticed this more since I was given the Freestyle Libre, I’m having up-to 10 hypos per day & the hypos happen as I mentioned earlier.
I have adjusted my ratios of insulin & carbs but nothing seems to improve on the control of my BG levels.
I’ve also noticed sometimes that my BG levels rise to approximately 11-14 mmol/L after I have steadily taken 10g of Carbohydrates every 15min to get my BG to 6.5 mmol/L
then about an hour later it has risen to 11-14 mmol/L.
My time blocks on my insulin pump is
7am-9am CarbRatio 1.1U-10g
9am-11am CarbRatio 1.0U-10g
11am-5pm CarbRatio 1.0U-10g
5pm-7am CarbRatio 1.1U-10g ( I have now just adjusted the 5-7 CarbRatio to 1.0U-10g)
I’ve never heard of RH until I looked at this forum tonight.
My last appointment with my ENDO was about 12 months ago and before you get to see him you are asked to fill in a form, this form asks the patient what they want to discuss with the ENDO, I put on my form I wanted to discuss CGM & Brittle Diabetes.
When I went into his room for a chat he said there is no funding for the CGM in your area and he wouldn’t discuss the Brittle Diabetes with me.
Until tonight I thought I was suffering from Brittle Diabetes but I now believe it’s RH.
I know this is a very long message but I would love to hear anybody’s comments on my condition?
Thank you in advance

 

[Brunneria]

Hi everyone I have just been reading all the events and comments on RH, I now believe that I’m having the same problem suffering with RH. I’ve been a T1 for 58 years and have always had good control with my diabetes and HBA1Cs have been between 5:6-6.7
For many years I’ve been testing my BG up to 10x per day and when I spot a drop in BG (4.0) I have 12 grams of carbs and recheck when the alarm goes off on my BG meter 15mins later. I’ve been on an insulin pump for the last 9 years and previously injecting up to 10x per day with Novo Rapid.

Over the last 3 weeks I’ve noticed that my BG levels are dropping rapidly just as I eat, whilst I’m eating & after I’ve eaten.

I have noticed this more since I was given the Freestyle Libre, I’m having up-to 10 hypos per day & the hypos happen as I mentioned earlier.
I have adjusted my ratios of insulin & carbs but nothing seems to improve on the control of my BG levels.
I’ve also noticed sometimes that my BG levels rise to approximately 11-14 mmol/L after I have steadily taken 10g of Carbohydrates every 15min to get my BG to 6.5 mmol/L
then about an hour later it has risen to 11-14 mmol/L.
My time blocks on my insulin pump is
7am-9am CarbRatio 1.1U-10g
9am-11am CarbRatio 1.0U-10g
11am-5pm CarbRatio 1.0U-10g
5pm-7am CarbRatio 1.1U-10g ( I have now just adjusted the 5-7 CarbRatio to 1.0U-10g)
I’ve never heard of RH until I looked at this forum tonight.
My last appointment with my ENDO was about 12 months ago and before you get to see him you are asked to fill in a form, this form asks the patient what they want to discuss with the ENDO, I put on my form I wanted to discuss CGM & Brittle Diabetes.
When I went into his room for a chat he said there is no funding for the CGM in your area and he wouldn’t discuss the Brittle Diabetes with me.
Until tonight I thought I was suffering from Brittle Diabetes but I now believe it’s RH.
I know this is a very long message but I would love to hear anybody’s comments on my condition?
Thank you in advance

Hi @gollymax

The best I can suggest is that you are clearly experiencing rapid fluctuations in blood glucose, but I don’t see how it could be RH because RH requires that your body’s own insulin is over produced (in a reaction to a hyper caused by carbs), and as a T1 you won’t be producing your own insulin... it does sound like you are experiencing the same symptoms, but the cause must be different.

I do think though that what you describe looks very much like RH, complete with rapid highs, then sharp drops into hypos, n a nastily repeating cycle. Wears you out, doesn’t it? You have my sympathy!

You may find it interesting to know that some (many? all?) of us RHers (bear in mind I only have a small number to compare) seem to have food intolerances which muck up blood glucose stability. For me, it is gluten. For @Lamont D I believe it is potato. So I can only speculate that an intolerance may be a factor for you? But I simply don’t know if T1s have any similar experiences. It may be something completely different.

I can only suggest that you have a confab with other T1s about pre-bolusing and sugar surfing. I will tag in a few T1s to see if they have any comments. I believe @kev-w has experience of brittle diabetes, and I know that @Mel dCP found her blood glucose very difficult to control at certain carb intake levels, and @Scott-C Has used a Libre to good effect. Hopefully they can offer suggestions from T1 viewpoints.

Hope you find an answer!

 

[Lamont D]

Hi and welcome to our forum, I believe I can assure you, you have not got RH, because the condition requires an overshoot of insulin and producing too much after carbs, if you have been diagnosed as T1, then your condition is a lack of insulin period. Hence having to inject insulin regularly.
It might be what is known as the rebound effect from your insulin.
But that is me guessing.

I don't have the knowledge to help you, sorry!

 

[Discovery22]

Hi and welcome!

Sorry to hear about your diagnosis and all the tests.
You must be reeling!

My personal suggestion would be to avoid making any drastic changes until you have the results of your other tests.
I have no idea whether RH and diabetes insipidus can be confused with one another, but insipidus doesn’t often get discussed on the forum, and I know very little about it, except that it is very different from the t1, 2 and 3s that we normally discuss.

As a result I would hate to make any suggestions that might clash.

What advice/instructions have you been given so far by the consultant?

Hi. Thank you for answering. Diabetes Insipidus is completely unrelated to diabetes. I believe it gets it’s name due to it causing massive thirst. They think mine is related to the fact I’m on Lithium. Trouble is, I think my thirst is having an effect on my blood sugars

 

[Discovery22]

Hi and welcome to our forum,
I had to wait until I saw my specialist endocrinologist before I knew that the diagnosis I was given, had just been a step in the tests that I had to have. So, again, I would wait till you seen your endo.
But there is a couple of small things that would help your doctors, if you haven't started a food diary, do so, because it will become valuable when you are going through the discovery phase, of finding which foods you are intolerant to. These will be usually carbohydrates.
The other thing , if you haven't already is you will need a good glucometer, this is part of having a food diary as well.


Another part of eventually getting a diagnosis, is understanding why and how you keep having episodes of Hypoglycaemia and how to avoid having these episodes.
There is plenty of knowledge on the threads in the forum.

Have you had any other tests?

Keep asking, our experience can help you.

Best wishes and welcome again.

Hi. Thanks for replying.

I haven’t started a diary so that’s probably a good idea. I have a good glucometer however my gp is reluctant to prescribe the cassettes for it anymore (although he was before) as I don’t have a diagnosis of being diabetic and I’m not on insulin. I know I’ve had it for years however it does seem to be getting worse. I only ever used to monitor my blood when I felt dodgy but now understand I have to monitor it just before eating and for a couple of hours after to really work out what foods to avoid. Try telling that to my gp

 

[Discovery22]

Hi @gollymax

The best I can suggest is that you are clearly experiencing rapid fluctuations in blood glucose, but I don’t see how it could be RH because RH requires that your body’s own insulin is over produced (in a reaction to a hyper caused by carbs), and as a T1 you won’t be producing your own insulin... it does sound like you are experiencing the same symptoms, but the cause must be different.

I do think though that what you describe looks very much like RH, complete with rapid highs, then sharp drops into hypos, n a nastily repeating cycle. Wears you out, doesn’t it? You have my sympathy!

You may find it interesting to know that some (many? all?) of us RHers (bear in mind I only have a small number to compare) seem to have food intolerances which muck up blood glucose stability. For me, it is gluten. For @Lamont D I believe it is potato. So I can only speculate that an intolerance may be a factor for you? But I simply don’t know if T1s have any similar experiences. It may be something completely different.

I can only suggest that you have a confab with other T1s about pre-bolusing and sugar surfing. I will tag in a few T1s to see if they have any comments. I believe @kev-w has experience of brittle diabetes, and I know that @Mel dCP found her blood glucose very difficult to control at certain carb intake levels, and @Scott-C Has used a Libre to good effect. Hopefully they can offer suggestions from T1 viewpoints.

Hope you find an answer!

Hi, I don’t have T1. I had gestational diabetes twice 18yrs ago and 15yrs ago. Was you confusing that with diabetes insipidus? Which isn’t related to diabetes but causes extreme thirst which then I turn I believe is messing with my RH stability. All I know so far is that I can’t have sugar of any kind without it ruining my day UNLESS I’ve had a full meal with it. Then I can get away with a small amount

 

[kokhongw]

I find roast pork belly/pork ribs soup never fails to gives me the most boring glucose response...

 

[Discovery22]

Hi and welcome to our forum, I believe I can assure you, you have not got RH, because the condition requires an overshoot of insulin and producing too much after carbs, if you have been diagnosed as T1, then your condition is a lack of insulin period. Hence having to inject insulin regularly.
It might be what is known as the rebound effect from your insulin.
But that is me guessing.

I don't have the knowledge to help you, sorry!

Hi. I don’t have T1 as a diagnosis. Just RH.

 

[Brunneria]

Hi, I don’t have T1. I had gestational diabetes twice 18yrs ago and 15yrs ago. Was you confusing that with diabetes insipidus? Which isn’t related to diabetes but causes extreme thirst which then I turn I believe is messing with my RH stability. All I know so far is that I can’t have sugar of any kind without it ruining my day UNLESS I’ve had a full meal with it. Then I can get away with a small amount

Hi,
I was addressing @gollymax when I was talking about T1.

 

[gollymax]

Hi everyone who acknowledged my messages on the 23/11/2018

I finally got an emergency appointment at the Hospital I attend for my Diabetes. I saw a different diabetic consultant as I have recently learnt that my old consultant had resigned and they had to cancel lots of appointments, me being one of them.

When I met him, I explained that I have serious problems with my BG levels just going up and down no matter what I do with my Bolus and Basal rate changes, upon my discussion with him he learnt that I have lots of other problems, COPD, occupational Asthma, Bronchiectasis, ischaemic heart disease with 2 stents in 2011 another heart attach in October 2018 investigations still being carried out, stroke in 1995, sleep apnea, restless leg syndrome, and severe back pains caused by a RTA in 2015 which I use 2 walking sticks and a mobility scooter to get mobile plus high dosage of morphine patches,
Two operations on my stomach in November 2015 & March 2016.

He then said that my weight had gone from 98kg to 60kg in just over a year.
He has now wants some tests done urgently for Addison Disease, Test to see if body is making enough steroids, Celiac Screening, endoscope and a HIV test.

YOU CAN IMAGINE how I felt when he said a HIV Test, my wife and I looked at each other and I said but HIV is a sexually transmitted disease.
He said that due to my circumstances, I may have it in my system, I can only assume I could of got it though things connected with blood in the hospital, if the results show I’m HIV positive.

He then went on to say my BG levels will not be properly stabled until your weight has improved and have all the results from your test, so we can treat.

I’m just now a very very sad and worried man

 

[Brunneria]

Hi everyone who acknowledged my messages on the 23/11/2018

I finally got an emergency appointment at the Hospital I attend for my Diabetes. I saw a different diabetic consultant as I have recently learnt that my old consultant had resigned and they had to cancel lots of appointments, me being one of them.

When I met him, I explained that I have serious problems with my BG levels just going up and down no matter what I do with my Bolus and Basal rate changes, upon my discussion with him he learnt that I have lots of other problems, COPD, occupational Asthma, Bronchiectasis, ischaemic heart disease with 2 stents in 2011 another heart attach in October 2018 investigations still being carried out, stroke in 1995, sleep apnea, restless leg syndrome, and severe back pains caused by a RTA in 2015 which I use 2 walking sticks and a mobility scooter to get mobile plus high dosage of morphine patches,
Two operations on my stomach in November 2015 & March 2016.

He then said that my weight had gone from 98kg to 60kg in just over a year.
He has now wants some tests done urgently for Addison Disease, Test to see if body is making enough steroids, Celiac Screening, endoscope and a HIV test.

YOU CAN IMAGINE how I felt when he said a HIV Test, my wife and I looked at each other and I said but HIV is a sexually transmitted disease.
He said that due to my circumstances, I may have it in my system, I can only assume I could of got it though things connected with blood in the hospital, if the results show I’m HIV positive.

He then went on to say my BG levels will not be properly stabled until your weight has improved and have all the results from your test, so we can treat.

I’m just now a very very sad and worried man

Oh @gollymax what a terrible shock for you.
You must be feeling as though you’ve been run over by a bus. Thank heavens your new consultant is taking this seriously and investigating properly.

All those events and diagnoses in such a succession, and now more tests and more diagnoses hanging over you.

I know the AIDS test must be haunting you. But if it comes back negative, then it will have been eliminated as a possibility, or you will start to get some much needed medical care. Small consolation at this stage, I know, but something to cling to.

Emotionally, both you and your wife must be struggling.
It is hard enough to live with complex medical conditions, but when another one arrives, the burden increases and they stack up terribly.

May I suggest that you ask your surgery to be referred for some counselling? Your wife too. Maybe together? Sometimes finding ways to cope with all these blows is harder than the blows themselves, and a counsellor may be able to offer a few suggestions. I bet you are currently on a merry go round of anger, despair and grief.

Thank you so much for coming back and letting us know your news. I have been wondering how you were doing. Please keep us informed, and know that you are welcome to post (and vent) here whenever you need to.

 

[gollymax]

Hi Brunneira, I thought I would come back and give an update on how things are going,
I have some information from the Urgent CT Scan.
I’ll explain as best as I can in the order of what’s been happening.

I had my urgent CT Scan done on the 27th December after chasing the Radiology department, after the CT Scan the Radiologist lady said that I will receive a letter from the hospital within a week or two weeks and if I don’t then I must phone the hospital ( this started to ring alarm bells) anyway after 2 weeks my wife rang the hospital and spoke to the diabetes consultant Secretary, the Secretary looked on her system to find that there was no results at the moment and she said that she would chase the Radiology Department, we left it for a few days and phoned the Secretary again but got no answer so we left a message on the answer phone.

The Secretary contact us at home and told us that she has not yet received the results, My wife decided to contact PALs at the hospital and told them that this CT Scan was marked as urgent and we have not yet received the results and the Secretary has not either, PALs contacted the Radiology Department and finally got the results sent through to the Diabetes Consultant, but we have now learnt that the diabetes Consultant has been on holiday for a few weeks and is back on the 28th January 2019, the only thing we did find out was that I now have “Sinus Sickness Syndrome “ which I believe was picked up on the CT Scan.
I’m still loosing weight and when I was at the heart clinic last week they told me my weight was 57 Kg.
My wife is going to phone the hospital tomorrow and ask the Secretary if I can get to see the Diabetes Consultant ASAP.
I’m hoping that the rest of the results are OK.

 

[kitedoc]

Hi @gollymax, Apologies for being late to this forum. From reading as a T1D of 52 years, not as professional advice or opinion:
Firstly, are your hypo problems still as troublesome?
Second; The results of blood tests for Addison's and coeliac disease would be back by now ? How did they go?
An endoscopy I assume is to do with a sampling of the upper part of the small intestine as a further check for coeliac disease. Not sure if there has been time for that to have been done? ( my daughter has CD)
Third: The C.T. scan, There should be a heading on the scan detailing why the scan was ordered,, what the orderer of the test was looking for. That would give a clue about things but being told about sick sinus syndrome sounds like a bit of a unusual thing to pick up. There must be more to the report, even if to say what was not found, or what was normal. And if they picked up the heart rhythm trouble (sick sinus S) then I assume the CT scan was in the upper chest/lung area, did it include the abdomen as well (should be on the order e.g. CT chest and abdomen or CT chest)
Fourth: Somewhere along the way I assume you had a blood test to check the thyroid gland?
Fourth: the state of your kidneys; have you had tests to check on your kidney function? e.g. blood test? blood and urine test about the same time? Scans of the kidneys, prostate gland etc? It is just that if one's kidneys are not functioning well, they delay excreting the insulin from the body. If the insulin is not cleared away after it has been injected and 'done its thing' with assisting glucose get into cells it can add its effect to the new insulin being injected by your insulin pump, causing hypos.
Also with CT scans they sometimes give a dye through an arm vein to help get better pictures. If the kidneys are struggling a bit the dye can cause damage to them. So kidney function is usually check before a CT scan to ensure that if the kidneys are not fit enough, the dye is not used.
Sorry to burden you with these questions. I am just trying to follow the trail of sorting out being done ( and to appreciate the trial it is for you and your wife). Best Wishes.