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Yikes! Is there a 3 year jinx!!!


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I came here today when I rarely visit now and it seems a few of us are having some quite serious 3+ year issues. I've had a week of surprises myself and was going to keep quiet for at least a couple more weeks, until I saw how brave a few members have been regarding their current struggles. They do say trouble comes in threes....so I tell you mine.

1. Endocrinologist I saw on Monday has told me the next step in trying to control my Reactive hypoglycemia is to chemically give me diabetes!!!! Needless to say I don't ever intend to return to him again. I thought we were supposed to avoid diabetes,  so deliberately bringing it on sounds completely counter intuitive. 

2. It would appear I'm losing my vision....courtesy of the RH, so I'll be having further testing next week....another reason why bringing on diabetes seems a very dangerous idea.

3. My bone density test results came in and over the past 2 years I've lost 12.5% of my bone density. However I'm too young to get the subsidised treatment in Australia. My blood testing has always looked okay, and I intake over 300% of the RDI for calcium. So I'm having a full workup bloodwise in two weeks. Drs are also tying all this into the RH.

I've actually made an appointment to see a new (to me) private bariatric surgeon who happened to be visiting surgeon in my town when I had my recent endoscopy followup.  The good news is that my surgeon couldn't find any sign of the ulcer they found pre-covid. Unfortunately he does think I may need a revisional surgery again, but more likely a reversal. There I was planning for abdominoplasty and I get told my bypass possibly needs to be reversed. 

On the plus side, I'm currently maintaining within about a 5 pound window. How long that holds though is anyone's guess now.

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Hey @Aussie Bear, so good to hear from you. I'm sorry to hear the not-so-fun medical feedback though. I know you have been doing your darndest to deal with the RH the best you can, and have done amazingly so might I add! 

How do you feel about the possibility of a reversal? Do they think that could help reverse the RH as well, or at least assist in managing it? I hope they can give you some good feedback to help put your mind at ease. And wtg maintaining your weight under all that stress. Please know you are in my thoughts, and I am rooting for you - you are not alone <3

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3 hours ago, Ladybugzzz86 said:

Hey @Aussie Bear, so good to hear from you. I'm sorry to hear the not-so-fun medical feedback though. I know you have been doing your darndest to deal with the RH the best you can, and have done amazingly so might I add! 

How do you feel about the possibility of a reversal? Do they think that could help reverse the RH as well, or at least assist in managing it? I hope they can give you some good feedback to help put your mind at ease. And wtg maintaining your weight under all that stress. Please know you are in my thoughts, and I am rooting for you - you are not alone <3

Thanks @Ladybugzzz86 I know you're currently having you own trials and hope things are turning around for you.

In my case the belief is that a reversal with completely resolve the RH as well as the other issues. How do I feel about that.....I doubt it would ever happen even if I wanted it to. Health funding is very different in Australia where we have a two tier system. First is the government funded health system and then the health insurance,  privately funded system. No way will my surgeon approve it in the government system. The surgeon suggesting it might need to happen, is in the private system  He won't do any revisions without PHI in place because of the huge complication rates when it comes to revisional surgeries.  I don't have that, so even if it was affordable (which it isn't), I'd be waiting for at least a year for it to kick in due to it being a pre-existing issue. This surgeon does have some tests he particularly wants to run, so I'm going to look into this aspect. I'm also keen to see all of the blood testing results he's insistent I need and should have been having regularly.  I do have regular blood tests just not the full raft he makes his patients have. Whether there are some answers to be had in these tests, I have no clue....just have to wait and find out I guess,  then sort out how to deal with it afterwards. My surgeon and the one I'll be seeing do know each other very well, and I was told even sub in for each other at their individual hospitals. I'm hoping that if there is an obvious solution that this private surgeon finds, my surgeon won't be offended that I sought answers elsewhere. He did afterall organise our initial meeting (whether he knew it or not at the time) by scheduling my endoscopy followup appointment when the private surgeon was on duty at my local hospital. 

This whole WLS trip really is a huge lesson in learning to be patient. Here I was thinking I was waiting to finish my transformation with my abdominoplasty surgery,  only to find things going very pear-shaped. 

Edited by Aussie Bear
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@Aussie Bear thank you for the kind thoughts and reply. It sounds like you at least have a good medical team in your corner, who are willing to go the extra mile. That can be rare (at least in my little corner of the world). 

I am sorry that the reversal doesn't sound like an option for you right now. But on the plus side, maybe something will come back in your lab work/tests that can help direct them to less invasive options anyhow. Please update us with the results, if you are comfortable doing that. It is a very interesting disease process, I had to look it up to wrap my mind around it. Usually when you think of eating, you think sugars go up, not down. After everything you've been through, your determination is outstanding - please give yourself a pat on the back for preserving. You are one tough cookie. B)

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5 hours ago, Ladybugzzz86 said:

@Aussie Bear thank you for the kind thoughts and reply. It sounds like you at least have a good medical team in your corner, who are willing to go the extra mile. That can be rare (at least in my little corner of the world). 

I have a great surgeon (that was pure luck), and an excellent GP. I travel over 300 kms to see him because I have yet to find a local one that is worth going to that is actually taking on new patients.  I am a good advocate for myself I think. I refuse appointments with medicos that I can't respect due to previous experience,  as well as those that have had run ins with the medical board, that's public information here in Australia. The only reason I've been able to get as far as I have so far is that I haven't been pegged as a "drug seeker" or a hypercondriac... yet!!!  I'm still not 100% on the private surgeon I'll be seeing, but my GP wants me to give him a chance. I'm only doing that at this point because that's the only way I've been presented to get the extensive post-RNY protocol tests run. Whether that testing will yield answers still remains to be seen. I will let you know here what (if anything) comes from it

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So I'm down another appointment ..the eye test. That didn't go well. The optometrist that was doing it kept telling me I need to be checked for diabetes, despite me explaining that I don't have diabetes, rather I have hyperinsulinemia.  That he understood better than reactive hypoglycemia. The good news was no cataracts, the  shitty news was that my eyesight has majorly deteriorated, my left eye is actively bleeding (he thinks the right eye probably is too) and the pressure test is indicative of glaucoma. He wasn't able to do the dilation today which he needs to do to fully diagnose what's going on, and has no available appointment spots left before next month. I'm not waiting for him. I've already made an appointment to see my doctor in a couple of days and hopefully get a referral to an ophthalmologist. I at least should be able to get a start on any waiting time for them.

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On 9/11/2020 at 4:19 AM, Aussie Bear said:

I came here today when I rarely visit now and it seems a few of us are having some quite serious 3+ year issues. I've had a week of surprises myself and was going to keep quiet for at least a couple more weeks, until I saw how brave a few members have been regarding their current struggles. They do say trouble comes in threes....so I tell you mine.

1. Endocrinologist I saw on Monday has told me the next step in trying to control my Reactive hypoglycemia is to chemically give me diabetes!!!! Needless to say I don't ever intend to return to him again. I thought we were supposed to avoid diabetes,  so deliberately bringing it on sounds completely counter intuitive. 

2. It would appear I'm losing my vision....courtesy of the RH, so I'll be having further testing next week....another reason why bringing on diabetes seems a very dangerous idea.

3. My bone density test results came in and over the past 2 years I've lost 12.5% of my bone density. However I'm too young to get the subsidised treatment in Australia. My blood testing has always looked okay, and I intake over 300% of the RDI for calcium. So I'm having a full workup bloodwise in two weeks. Drs are also tying all this into the RH.

I've actually made an appointment to see a new (to me) private bariatric surgeon who happened to be visiting surgeon in my town when I had my recent endoscopy followup.  The good news is that my surgeon couldn't find any sign of the ulcer they found pre-covid. Unfortunately he does think I may need a revisional surgery again, but more likely a reversal. There I was planning for abdominoplasty and I get told my bypass possibly needs to be reversed. 

On the plus side, I'm currently maintaining within about a 5 pound window. How long that holds though is anyone's guess now.

Wow, @Aussie Bear, I guess there is a 3 year jinx!! 

I don’t know a lot, anything really,  about reactive hypoglycemia. I know @PapaDavidhas been having some episodes lately that would HINT at RH to me, from what I’ve seen you post, but past that I don’t know. I am a type 2 diabetic, now in remission, as you know. I know what low blood sugar attacks feel like, but I rarely have them now.  I can’t imagine why in the world someone would suggest bringing on chemically induced diabetes, but I’m not a doctor. I would think they’d have medication to counteract low BS like they do high BS, unless it’s just glucose tabs and things like that. I would most definitely have to get a second, third and fourth opinion before I would dare go that route! I know in the US, all endocrinologists are not created equal, so seeing someone new would be best. I have a good one, but I got very lucky.

I lost my reading vision years ago due to high blood sugar (I mean in the 450-550 range for months), after a 2 week episode of almost completely losing my vision all together. Once my distance vision came back to normal, my reading vision never did. I wear contacts, but I still need readers in addition to the contacts in order to read anything. I’m assuming that consistently low BS can do the same thing? Or is it due to the suspected cataracts? Diabetes is not something you want if you are already having vision problems...you don’t want it at all. 

The bone density issue has me questioning something. Have they tested your blood calcium level recently? There can be issues with your bone density if your blood calcium is too high. That can be a sign of a parathyroid problem. That’s what I had, and how they found my thyroid cancer when they removed the para. My teeth were cracking and breaking, my hair was falling out, etc. My endo told me that, ironically, me being obese actually saved me from losing bone mass during this time. Because your bones don’t know the difference between lifting weights and carrying extra body weight, my obesity actually saved my bones. Go figure. 

And on top of all of this, you need a reversal??? I’m so happy to hear that the ulcer is gone, but is there a structural issue that is causing the need for the reversal? Oh my dear friend! I don’t even know what to say :( The maintenance is awesome...but I just can’t even imagine needing a reversal after everything you’ve been through!! Now I wish even more that were were closer and could give real life hugs, because it sounds like you need a pretty big one! You have been through the ringer, and you’re one very strong woman! But this has got to be wearing on you. I hope you know I’m always here if you need to talk, and I’m always praying for you. Let me know if there is anything I can do ❤️ We’ve got your back!

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Interesting @Nana Trish. I have been having 3 monthly blood testing and including blood calcium and they've always been in normal range. I never really focussed on them because I've often read that your blood will rob your bones of the calcium if you aren't taking in enough...in other odds a flawed measure. Interestingly I have had two teeth crack and break in the last few weeks. You have me wondering now.

I did have thyroid testing some time ago (can't remember when but it was at least a year ago probably more) and results were fine then. I do know that will be being done again at the end of next week when I see a new bariatric surgeon. He's the one that thinks a reversal might end up being the only option, but before that he's going to run "all the tests he would if I were one of his surgical patients".  He isn't even aware of any of the new stuff, I.e. bone density or eyesight.

As for the RH, initially I was treated with acarbose. Supposedly that works by decreasing the amount of sugar you absorb, thereby reducing the amount of insulin released. It really didn't change things for me, it just seemed to delay the high,  the low was still as low as ever. I did actually measure the effectiveness last time I was asked to do a blood sugar diary by eating exercising and keeping the exact routine on consecutive days to measure the differences.  The new treatment he's suggesting is actually used for inoperable pancreatic cancer sufferers and designed to shut down insulin production. Turns out this medication isn't available in tablet form in Australia anyway. This endocrinologist admits he doesn't have any experience with the condition, so I'm reluctant to bother seeing him again. Since the bone density findings, my local doctor has offered to refer me to different endocrinologist, who I'd at least only have to travel about 50 miles to see (the current one is 250 miles), but I'm not convinced I'd get any different advice anyway. I'm going to steal your word Trish and say that at the moment I feel "defeated". I felt that way when I found out about the bone density loss, but after 24 hours I was okay knowing I was going to have further testing next week and we'd get to the bottom of the problem. After yesterday though...let's just say I hit bottom again. I'm very impatient and waiting almost 4 weeks to finish the eye exam is not cutting it for me, even though I know not much will change in that 4 weeks. So I got the earliest appointment I could with my doctor, and I'm going to explain everything and tell him he needs to help me feel more confident that all the is manageable and that I'm in good hands. I really need him to tell me he's got this, because I think he got a bit complacent (not like him at all) when it came to the last 9 months or so. Covid certainly made things hard, with consults over the phone, and even specialist visits very hard to come by. I had to wait 6 months for the ban to lift on endoscopies just so I could get my ulcer followed up. The medication they were forcing me to take in the meantime is known to wreak havoc on bone density as well as cause the over release of insulin. Both issues that have affected my health status recently, yet not a single Dr I dealt with in all that timed even mentioned it to me. Just as well we have a good relationship and that he knows me well, because this will be one tough consult for both of us I think.

The one plus side I heard yesterday is that my state have finally reopened the border with the state my therapist comes from. So I'm hoping it won't be too long before he pays a visit again, because I sure could use a top up of confidence. 

Edited by Aussie Bear
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5 minutes ago, Aussie Bear said:

Interesting @Nana Trish. I have been having 3 monthly blood testing and including blood calcium and they've always been in normal range. I never really focussed on them because I've often read that your blood will rob your bones of the calcium if you aren't taking in enough...in other odds a flawed measure. Interestingly I have had two teeth crackers and break in the last few weeks. You have me wondering now.

The parathyroid and the thyroid are 2 different things. The parathyroid controls the blood calcium levels. If you have high blood calcium, they normally do a parathyroid hormone test, and if that is high as well, that means that one or more parathyroids are not functioning properly. When even one of the four malfunctions, the blood does rob the calcium from the bones, which causes loss of bone mass. Especially at your weight. In the US, the high normal is 10, and I was 11.4. But apparently, even just .1 or .2 over 10 is cause for concern. I’m not sure what your range is in Australia...it’s probably measured differently than it is here. But if your blood calcium is normal, even though you are taking extra calcium, chances are it isn’t the parathyroid causing it.

Check your test results over carefully if you have copies of them. Hopefully it’s not that, but if it is, it’s an easy fix. Removing the parathyroid consists of a 2 inch incision, locating the bad para and taking it out. It’s not a painful recovery, but you’d have to stay overnight for observation, most likely, to watch for neck swelling. Just something to consider 

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Oh boy...I’m sitting here falling asleep as I type, lol. I’ll be back tomorrow to finish ❤️ Take care my friend. I hope you have a good night!

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1 minute ago, Nana Trish said:

The parathyroid and the thyroid are 2 different things. The parathyroid controls the blood calcium levels. If you have high blood calcium, they normally do a parathyroid hormone test, and if that is high as well, that means that one or more parathyroids are not functioning properly. When even one of the four malfunctions, the blood does rob the calcium from the bones, which causes loss of bone mass. Especially at your weight. In the US, the high normal is 10, and I was 11.4. But apparently, even just .1 or .2 over 10 is cause for concern. I’m not sure what your range is in Australia...it’s probably measured differently than it is here. But if your blood calcium is normal, even though you are taking extra calcium, chances are it isn’t the parathyroid causing it.

Check your test results over carefully if you have copies of them. Hopefully it’s not that, but if it is, it’s an easy fix. Removing the parathyroid consists of a 2 inch incision, locating the bad para and taking it out. It’s not a painful recovery, but you’d have to stay overnight for observation, most likely, to watch for neck swelling. Just something to consider 

I do know the new surgeon specifically mentioned parathyroid testing. Unfortunately just because we take calcium supplements after bypass, doesn't mean our body absorbs it. In my case I also have genetic hemochromatosis (so iron overload) which can negatively affect calcium absorption. He said I'll be getting a massive list of blood testing, plus he wants an MRI of the bowel. The blood testing I'll do, but the MRI I'll definitely discuss with my surgeon because I know why he wants it, and my surgeon may well have the answer to that without having to travel a long way for an expensive test. To be honest I think my surgeon will disagree with both the logic for doing it as well as the necessity. I did already arrange for the new guy to have digital access to my CT Scan that was done for the RH.

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On 9/15/2020 at 9:07 PM, Aussie Bear said:

I do know the new surgeon specifically mentioned parathyroid testing. Unfortunately just because we take calcium supplements after bypass, doesn't mean our body absorbs it. In my case I also have genetic hemochromatosis (so iron overload) which can negatively affect calcium absorption. He said I'll be getting a massive list of blood testing, plus he wants an MRI of the bowel. The blood testing I'll do, but the MRI I'll definitely discuss with my surgeon because I know why he wants it, and my surgeon may well have the answer to that without having to travel a long way for an expensive test. To be honest I think my surgeon will disagree with both the logic for doing it as well as the necessity. I did already arrange for the new guy to have digital access to my CT Scan that was done for the RH.

That’s so true with the calcium, no doubt. I had a lot of issues absorbing my calcium after the parathyroid surgery and subsequent thyroid removal, because it takes time for your remaining parathyroids (only one left in my case) to start working again. So I dealt with that issue even before my WLS. I’ve been fine since, though. 

It sounds like you’re getting a double whammy where the calcium absorption is concerned. I think a massive list of blood work sounds warranted in your case. I hope they can figure things out. Are you worried about the MRI because you think they will confirm that you need a reversal? Do you know when you’re having the blood work done? Please keep me posted. I’m saying prayers for you, my friend...I want to keep tabs on you! ❤️

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3 hours ago, Nana Trish said:

That’s so true with the calcium, no doubt. I had a lot of issues absorbing my calcium after the parathyroid surgery and subsequent thyroid removal, because it takes time for your remaining parathyroids (only one left in my case) to start working again. So I dealt with that issue even before my WLS. I’ve been fine since, though. 

It sounds like you’re getting a double whammy where the calcium absorption is concerned. I think a massive list of blood work sounds warranted in your case. I hope they can figure things out. Are you worried about the MRI because you think they will confirm that you need a reversal? Do you know when you’re having the blood work done? Please keep me posted. I’m saying prayers for you, my friend...I want to keep tabs on you! ❤️

The MRI really is more about cost, especially when I have new glasses to buy and other bills right now that are more important. While in Australia we do have a universal government funded health care system, it doesn't cover everything. This MRI for example will not be covered (neither are glasses) so I'll be up for the full cost, plus the nearest machine is a very long way from where I live. All the surgeon wanted to know was how long my bowel is, because he strongly believes that bowel length responsible for RH. He measures the length of bowel he leaves as opposed to the length he bypasses. Over the years, I've researched all I could about RH, and this is a theory I've never come across. Small pouch, large opening (which I do have) I can find clear references to causing RH, but I've never found any pertaining to bowel length. Also, if that's all he's after, then my more recent pelvic/abdominal CT, should be able to yield that answer for him. To me, it just seems a waste of money paying for an MRI when funds are extremely tight right now, if already existing testing can give the answer, and when I'm seeing no research that backs him up. Not that I've looked recently but will before my appointment. The blood tests I'll have on Friday, provided there are none there that need to be specifically booked. Where I live we just rock up to the centre, take a number and wait for the tech to take the blood. I'm due for a followup with a surgeon that assisted in my WLS in about two weeks, so I'll ask him at that time whether he believes there's any point in having the MRI as well as discussing the newer test results (although it is an appointment happening in a time crunch as it is now happening between booked surgeries for that day). According to the new surgeon, if the bowel is too long he'd recommend having surgery to shorten it, and if to short, the only thing they can do is reverse the surgery. I doubt (in the govt funded hospital sector) that either would be on offer anyway. If that's the case, there's really no point in knowing the answer.

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@Aussie Bear...ok, now I understand what you were talking about. I was a little confused before by what you said about needing a reversal. MRI’s are quite expensive here, so I certainly wouldn’t be able to afford to pay cash for one right now. Eye glasses are expensive too. I wear contact lenses because they are cheaper, and my insurance doesn’t cover glasses anyway. If they have a recent CT scan, they should be able to find what they are looking for using that. I can’t imagine having to shell out a lot of money for an MRI, if you’ve already had a CT. So intestine/bowel length has some correlation to RH? That is very interesting to know. I’ll have to have David talk to our surgeon about that, because I believe he might be experiencing RH. I don’t, but I think he does. 

It sounds to me like having universal health insurance isn’t all it’s cracked up to be...I’m sorry that you are in such a difficult situation partly because of that :( I hope they can find SOMETHING else they could do to help you. I’m sure it’s no fun living with RH. When you get the results after your blood work on Friday, please let me know if they find anything ❤️

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1 hour ago, Nana Trish said:

@Aussie Bear...ok, now I understand what you were talking about. I was a little confused before by what you said about needing a reversal. MRI’s are quite expensive here, so I certainly wouldn’t be able to afford to pay cash for one right now. Eye glasses are expensive too. I wear contact lenses because they are cheaper, and my insurance doesn’t cover glasses anyway. If they have a recent CT scan, they should be able to find what they are looking for using that. I can’t imagine having to shell out a lot of money for an MRI, if you’ve already had a CT. So intestine/bowel length has some correlation to RH? That is very interesting to know. I’ll have to have David talk to our surgeon about that, because I believe he might be experiencing RH. I don’t, but I think he does. 

It sounds to me like having universal health insurance isn’t all it’s cracked up to be...I’m sorry that you are in such a difficult situation partly because of that :( I hope they can find SOMETHING else they could do to help you. I’m sure it’s no fun living with RH. When you get the results after your blood work on Friday, please let me know if they find anything ❤️

Sorry, I was a bit vague initially about the potential for reversal being my only option. in part that's because I'd given up...to use your word "defeated" by it. It also appeared that even my surgeon was brushing it off as inconsequential,  and just telling me it's all about my diet. I still can't get my hopes up because the information regarding bowel length is a totally new concept to me, so I'm certainly not holding my breath on it. I understand that medical professionals are used to obese people telling them they are doing everything thats asked of them diet wise, when the reality is far from the truth....but I'm not! I also understand that some people over exaggerate their symptoms,  but even my doctor knows I'm the kind to underplay them. He's as frustrated by all this as I am, and this situation is far outside his field of expertise.  I'm honestly doing everything I can.

If you think David has RH, get him to do a blood diary. In my experience, you just aren't listened to without the proof, and even then it's touch and go how seriously the medical professionals will take it. I've actually had a doctor in ER (during an episode caused by a new medication that I'd only started that day....three tablets caused three hypos) tell me I'm not diabetic so shouldn't even be taking my BGL!!!! That was seriously his response. Others just say, "it's just dumping" and won't do any harm, yet my recent testing would indicate the exact opposite. 

On the plus side, I've just been stalking the online booking app for my pysch as the borders to my state opened again a couple of days ago. All of a sudden he's booked off his normal practice for a couple of weeks, so I'm really hoping he's heading over again. He hasn't appeared on the app his usual practice where I live is though. I could certainly use him about now....and definitely if this new approach just leaves me feeling that there's nothing I can do except watch my body deteriorate even further. I don't think I have the reserves anymore for another disappointment.  Hence why I'm trying not to get any hope up that this is going anywhere. Anyway, I'll let you know.

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10 hours ago, Aussie Bear said:

Sorry, I was a bit vague initially about the potential for reversal being my only option. in part that's because I'd given up...to use your word "defeated" by it. It also appeared that even my surgeon was brushing it off as inconsequential,  and just telling me it's all about my diet. I still can't get my hopes up because the information regarding bowel length is a totally new concept to me, so I'm certainly not holding my breath on it. I understand that medical professionals are used to obese people telling them they are doing everything thats asked of them diet wise, when the reality is far from the truth....but I'm not! I also understand that some people over exaggerate their symptoms,  but even my doctor knows I'm the kind to underplay them. He's as frustrated by all this as I am, and this situation is far outside his field of expertise.  I'm honestly doing everything I can.

If you think David has RH, get him to do a blood diary. In my experience, you just aren't listened to without the proof, and even then it's touch and go how seriously the medical professionals will take it. I've actually had a doctor in ER (during an episode caused by a new medication that I'd only started that day....three tablets caused three hypos) tell me I'm not diabetic so shouldn't even be taking my BGL!!!! That was seriously his response. Others just say, "it's just dumping" and won't do any harm, yet my recent testing would indicate the exact opposite. 

On the plus side, I've just been stalking the online booking app for my pysch as the borders to my state opened again a couple of days ago. All of a sudden he's booked off his normal practice for a couple of weeks, so I'm really hoping he's heading over again. He hasn't appeared on the app his usual practice where I live is though. I could certainly use him about now....and definitely if this new approach just leaves me feeling that there's nothing I can do except watch my body deteriorate even further. I don't think I have the reserves anymore for another disappointment.  Hence why I'm trying not to get any hope up that this is going anywhere. Anyway, I'll let you know.

Don’t be sorry about being vague, my level of understanding and memory has failed some, I’m sure due to my brain being soaked in alcohol for the past 2 years. Hopefully that will get better with time. 

I don’t know why it never occurred to me to have David test his blood sugar when he appears to be experiencing a crash. That only makes sense. And I have the test kit already, being a diabetic. His A1C was normal at his last checkup, but I’m not sure what it would be if he truly had RH. I will have him start doing that. I don’t know why they would tell you you shouldn’t be checking your sugar. It’s not like it’s dangerous to you, and you need to continue checking it when you have an episode, like you said, to have proof for the doctors. 

I can completely understand why you’re feeling defeated at this point. I’ve gone through situations many times where I’ve been misdiagnosed, accused of exaggerating my symptoms, and told they found the problem, but there was nothing they could do. It is so frustrating and so emotionally exhausting to go through all of that while you’re really sick, and just need someone to help you get better. On top of that, it sounds like you have to wait forever to even get in to see your doctor. Oh, my friend, I wish I had some advice for you that would help. What do you do when you have an RH episode? I mean, are you able to treat it at all on your own until they figure something out for you? I can’t even imagine...I’m so sorry. ❤️:(

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44 minutes ago, Nana Trish said:

Don’t be sorry about being vague, my level of understanding and memory has failed some, I’m sure due to my brain being soaked in alcohol for the past 2 years. Hopefully that will get better with time. 

I don’t know why it never occurred to me to have David test his blood sugar when he appears to be experiencing a crash. That only makes sense. And I have the test kit already, being a diabetic. His A1C was normal at his last checkup, but I’m not sure what it would be if he truly had RH. I will have him start doing that. I don’t know why they would tell you you shouldn’t be checking your sugar. It’s not like it’s dangerous to you, and you need to continue checking it when you have an episode, like you said, to have proof for the doctors. 

I can completely understand why you’re feeling defeated at this point. I’ve gone through situations many times where I’ve been misdiagnosed, accused of exaggerating my symptoms, and told they found the problem, but there was nothing they could do. It is so frustrating and so emotionally exhausting to go through all of that while you’re really sick, and just need someone to help you get better. On top of that, it sounds like you have to wait forever to even get in to see your doctor. Oh, my friend, I wish I had some advice for you that would help. What do you do when you have an RH episode? I mean, are you able to treat it at all on your own until they figure something out for you? I can’t even imagine...I’m so sorry. ❤️:(

Treating it is just the same as a diabetic treats a hypo...glucose tablets, or lollies (my personal favourite is stardust snakes where three will do the trick) fruit juice etc. Any of these usually kick in within 15 minutes. After an episode they recommend immediately consuming some protien with a complex carb. Bananas are good for the carb as they have some longer acting carbs along with the faster ones. They're just not enough of a sugar hit for me. I tend to have the lollies (and always carry some on me), followed by a cup of milk. I generally also have hard boiled eggs in my fridge, so will snack on one of those or a few almonds or cashews straight after the milk. Whatever you do though, don't give him sugar if his blood glucose levels don't require it, as you could just cause an issue. I have been told to self correct at 3.5 or below (in your language that's around about 65 I believe).

PS. I knew you'd have a blood glucose meter or two laying about the house. I was surprised that given your suspicions you weren't actually stabbing him everytime you were suss. I've been researching as well tonight and while I couldn't find anything about bowel length, I did find the terminology of Hyperinsulinemic Hypoglycemia.  The symptoms describe my situation to a "T". Still doesn't give any real solution,  but it does make a distinction between that and the much more common "dumping syndrome".

Edited by Aussie Bear
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Maybe my GP is right and someone up there is actually looking after me. I'm not a believer, but my GP is a very devout catholic. Turns out our state borders opened at just the right time and my (currently interstate) therapist will be in my home town, for the first time since February,  and I was able to book his first appointment the day after my final diagnostic eye exam next week. I suspect I'll be needing that appointment! 

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On 9/21/2020 at 10:22 AM, Aussie Bear said:

Treating it is just the same as a diabetic treats a hypo...glucose tablets, or lollies (my personal favourite is stardust snakes where three will do the trick) fruit juice etc. Any of these usually kick in within 15 minutes. After an episode they recommend immediately consuming some protien with a complex carb. Bananas are good for the carb as they have some longer acting carbs along with the faster ones. They're just not enough of a sugar hit for me. I tend to have the lollies (and always carry some on me), followed by a cup of milk. I generally also have hard boiled eggs in my fridge, so will snack on one of those or a few almonds or cashews straight after the milk. Whatever you do though, don't give him sugar if his blood glucose levels don't require it, as you could just cause an issue. I have been told to self correct at 3.5 or below (in your language that's around about 65 I believe).

PS. I knew you'd have a blood glucose meter or two laying about the house. I was surprised that given your suspicions you weren't actually stabbing him everytime you were suss. I've been researching as well tonight and while I couldn't find anything about bowel length, I did find the terminology of Hyperinsulinemic Hypoglycemia.  The symptoms describe my situation to a "T". Still doesn't give any real solution,  but it does make a distinction between that and the much more common "dumping syndrome".

I figured it was probably treated like diabetic hypo, but wasn't sure. I have actually had David test his sugar a few times, along with his blood pressure, with dizzy spells, etc. But when he has the episodes that I suspect might be RH, I'm too busy getting him some carbs to think about it at the time. I'll have to leave the meter out where I have quick access to it for that reason. I obviously don't keep it handy for myself anymore as I don't need to test on a regular basis anymore. I was told to self correct at anything under 70. I feel it hit me pretty hard if my sugar goes below that. The only time I've had that happen was about a year ago, on a day that I had 3 doctor's appointments. I had only eaten breakfast that day before we left, and by 5pm I was feeling it. I had to grab some shortbread cookies at the store we were walking through when it hit me. They didn't have anything else right there, and I needed something ASAP. 

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Well the appointment went really well given I wasn't actually one of their patients. The bariatric surgeon was really concerned about the bone density drop (finally someone was),  and the retinopathy diagnosis.  He's sure it's a nutritional issue, but they have to find it before they can determine what to do about it. He called one of the two surgeons that did my surgery (in the govt funded hospital system) with my permission, while I was in with the Bariatric GP who was going through my history, family history etc, as well as checking online all of my bloodwork going back years. He came in during that part of the appointment and said my surgeon has agreed (they're actually friends and my surgeon covers this new surgeons private patients when he's unavailable) that the new guy is better situated (allied health wise and without the restrictions of the public hospital system) to cover all the ongoing nutritional/malabsorption issues, but that my previous surgeon will do any necessary post investigation surgery in the govt funded sector as I have no insurance. Any needed surgical work they've said must happen before any abdominoplasty,  as the tighter abdomen would make later surgery much more difficult and potentially open incision. Plus if they have to go open incision they can do that in a section of my skin that will be removed in any future abdominoplasty surgery. They've also said there's no way that at the moment I'd heal well from abdominoplasty,  which was actually a concern of mine.

The testing regime is way more than I've ever seen. Normally I just have Complete Blood Count, B12, iron Studies, Liver Function, MBA (electrolytes/ kidney function).  Their standard 6 month tests include all of these plus Zinc, B6, Parathyroid Hormone, Fasting Cholesterol and TAG, Fasting Blood Sugar, HBA1c, Thyroid Stimulating Hormone, Complete Metabolic Profile, Folate, RCF(1) I believe this is some kind of bacterial endotoxin assay, B12, Coagulation Screen,, Vitamin A, and Vitamin E. All of these tests together make up their standard 6 monthly blood panels, so I can see why they weren't impressed with the ones I was routinely having, and having to fight to get more often than not.  Because of the newer diagnosed issues they also added in 24 hour urinary calcium and creatine (that'll be fun given I have to take in every drop of urine passed in 24 hours...reminds me of the joke where the doctor asks a guy fir a urine sample in he brings in 2 litre apple juice bottle instead of a tiny container....the collection bottle is massive at around 4 litres so over 8 pints), multiple myeloma screening (wish I hadn't seen this one....because curiosity made me google it and the 3 main symptoms are bones/eyes/kidneys...which just happen to be the three reasons I've been back and forth to my GP about the past few months) and serum and urine protien electrophoresis. Hopefully all of this testing will yield some answers...even though I'm hoping one of the test in particular proves to have been unnecessary.  Does this meet your approval @Nana Trish haha!

Edited by Aussie Bear
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Just checked here again @Nana Trish and noticed your comment re A1C and RH. If it helps mine tends to vary between 4.3-4.5. I suspect the periods of time in hypo (which tends to be longer than the period when blood sugars spike, keep the A1C on the lower side. My fasting insulin last time it was checked was 4.5, so that's on the lower side as well. Fasting insulin is something that rarely, if ever, gets checked by doctors in my part of the world. I had to get very insistent on being checked when I had mine done.

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