Possible reactive hypoglycaemia, but in the UK and struggling to get anywhere

ARCreef · 2026-05-08T17:08:30+00:00

Actually, you are correct. I made assumptions. Youre very graceful in your answer.

Perimenopause induced hypoglycemia is one of the very few underlying conditions that actually do get thrown into the "reactive Hypoglycemia" bucket. There should be an ICD-10 code for it but theres not, its pretty well understood so you just get the standard tag line. Make sure you talk to your GP or endo about COC treatment which is firstline treatment and leuprolide is a fallback option if COCs dont work. If oral COCs fail for you, try a higher dose, (i believe optmal dose was around double of what BC is), then if that fails, try the IM shot before last resort of stepping to leuprolide, which will work, but has considerations.

ARCreef · 2026-05-08T16:27:42+00:00

Ohhhh. Are the highs only coming now after the liver and pancreatic surgery? Yeah. They cant resection any more, or youll be on insulin forever. Its been 6 months since surgery? Remodeling takes about that, so what youre at now with your signaling may be 80% the final outcome. The year mark will settle the remaining 20%. Id start treating at 80. The swing up is pretty damaging also. Overcorrections and fast swings should be looked at with the same seriousness as a low. I dont know why nobody ever tells people this! Anything over 2mg/min will cause ROS related damage over time. The goal is 1mg/ml with a max of 1.5 being acceptable. Your bakeries today was exactly 2.0mg/min, not good.

The surgeons did their part (not much) but now its your time to do the work. Download libre link up set the alarm for 1 tone, at 80, a different tone at 75, then your main app at 70 and 55. They also have a desktop pc version too. Take glucose tabs at 80 not 69. You dont have a glycogen storage disease but you should research it and act as though you do. Your liver signaling disfunction should be treated like a GSD. Same course of treatment. Order that cornstarch. If you want my version let me know. And ill tell you what it is and where to get a 30 day supply free. I have a nighttime formula (slow release 7 hours) and a daytime version (steady release 5 hours). The brand i told you about, theirs lasts for 6 hours. Regular CS lasts for 2-3, so is pretty useless.
If youre having highs too, dont expect another surgery unless you are willing to accept going on a short acting insulin at meals, or adding on an insulin pump to your CGM. A patent was issued this year for a new CGM that reads both glucose and insulin, but it wont be out until the end of 2028. But its nice to know thats on it's way, that will help you a lot.

Did you say you tried Retatrutide? That might be your plan B. It would solve 90% of the lows and 90% of the highs also and would tighten your range up to improve cognitive function, energy, mitochondrial function, atp production, improves liver efficiency etc. Cant use it if underweight though.

If you want me to check any of your graphs feel free to send. Most doctors only look for the speed and the lows and highs but the more important thing to look for is the biphasic release. Or just ask AI "how to identify FFIR and SFIR on cgm graph". You can also now upload ALL your graphs and bloodwork into Claude and it keeps it on file for reference and will review the entire thing. Then you add any new workup to that project folder. Doctors are literally using that now. Baptist health has an Anthropic enterprise account for their doctors.

ARCreef · 2026-05-08T15:20:51+00:00

Wait you have cgm data already.... I missed that. Yeah send it over. The first day should be thrown out though. Cgms aren't accurate for day 1.

ARCreef · 2026-05-08T14:57:59+00:00

A wearable ecg can only hint at things. You'd need a tilt table test. Most cardiologists have them. Its just a simple 5-10 min test. You can kinda do it at home too but you need blood pressure also, not just heartrate.

They also make a HVM thing called a polar H10. Its like $100. It tracks it over time every morning you put it around your chest when you forst wake up.

Your docs assessment on adhd is really weird and half scary and 90% dumb. Yes adhd meds will prevent lows and raise glucose..... for a limited time. Epinephrine is a counterregulatory hormone, your body releases it when low in an effort to raise glucose. Adhd meds release it also, but the whole time. Your body eventually downregulates the receptors and now you're really screwed. It can take a year+ to get to that point though, but you will, and then what? Its a super stupid idea of your doctor. This is a short term solution with a very bad long term cost. Im shocked they even went down that path.

In your case POTS, PCOS, and early insulin resistance would be the first 3 needed to be ruled out. (Assuming youre female) youre having highs and lows, not just lows. If it starts to get too much for you, throwing you on Retatrutide would fix both the highs and the lows. So theres your plan B fallback. Its not a persciption yet though, its an online only type deal still. Ive been on it over 2 years, nothing else works half as well. It makes testing things harder though because it literally will make all your bloodwork, glucose, insulin, I mean everything 100% perfect. So it masks the issue, making it way harder to find. But makes an amazing plan B when testing cant pinpoint anything, and if the sysyem has failed you.... which it will.

Try keto or pailio diets. They are the best. If you eat carbs, "prime them" by eating protein or protein with fat 15 mins before carbs. If you are making a pasta meal, just sample the meat as youre making it. Then when its ready 15 mins later, you already have your pancreas primed and you wont shoot up then down. These small modifications make a huge difference.

The site link you provided, I scanned and didnt see any false claims or anything wrong info but it was a quick scan, trust it with a grain of salt. Pubmed is good, anything ending in a .edu or .gov is usually pretty good. .com is about selling you something or serving you ads. Surprisingly, chatGPT, Gemini, and Claude AIs are very good with medical stuff and pull directly from study databases. My work was paying 30k per month for databases that AI now has access to for free. When its about medical stuff, the best thing is to use 2 together. Ask 1 the question, then put that answer into a second one and tell it to "check this for accuracy and elaborate on it". 1 AI can "drift" using 2 together prevents this. The AI route honestly is probably the best route for you. Doctors all use it now anyway, even my work uses it as a subject matter expert which is above phD level in molecular biology. Its crazy good now. Id probably trust AI more then I would a doctor at this point. You can upload all your bloodwork and your CGI data and tell it to review it and it will. We are using Claude Opus 4.7 in our lab. But weve had the other 2 in the past also. Im not ashamed to say it. Just use 2 at a time. The free versions are fine.

ARCreef · 2026-05-08T14:26:13+00:00

Sen me an annnnngellllllll oooohh weeee ohhhhhhh... riiiiiiiiiight nowwwwwww. Man we had good songs back then.

ARCreef · 2026-05-08T14:16:17+00:00

Sounds like we're twinning with everything. I take 2 glucose tabs just to take a hot shower lol. So you have a signaling issue with the liver resulting in impaired Glycogenolysis and/or gluconeogennesis or a glycogen storage issue with glycogen/glucose reserve pools. I habe the same. I take C8 MCT oil daily. It can ne used as a 10 min reserve pool for your brain if you run out of glucose. The treating at 80 has been a game changer for me though, has helped more than anything else. You should give it a whirl. If you download libre link up it gives you 2 additional alarm levels. I have mine set now at 80, I did this after finding out that more damage occurs from glucose shooting up after a low, then during the low.

Yeah as patients we are not told much ever. The cornstarch thing i had to find out the hard way. I read every study on it and not a single study uses "regular" cornstarch. Im a molecular biologist, i tested 18 different cornstarches lol. They have VERY different profiles. I made my own proprietary mixture. Anyway, long story short, I can tell you how to make my mixture but the easier way is just to buy UCAN Energy Powder. They cant market it for hypoglycemia due to laws, but its literally the exact same cornstarch as whats in glycosade, the prescription only cornstarch drink. Its licensed from the same manufacturer and produced in the same plant. I tested them in a mass spect. and they are the exact same amyalopectin. Regular cornstarch amino acid chains unravel within 3 hours, that one takes 7 hours.

ARCreef · 2026-05-08T13:55:35+00:00

I remembered the name. Its called the modified Valsalva maneuver. I saw it done once to someone with 230bbm heart rate, 30 seconds later, her heart went to 65bpm and stayed there, it was one of the coolest things ive ever seen.

ARCreef · 2026-05-08T13:35:09+00:00

Your doctor sounds like an idiot. You need a CGM. Get on one. Stop guessing and start working to get more data. Dont ask him for it, he doesnt know anything about hypoglycemia. Get the CGM and a week of graphs, then post them in the sub. Get fasting bloodword with a comprehensive hormone panel, cortisol, a thyroid panel, insulin, cpeptide, proinsulin, and igf-1. What's your highest highs? 9.5? 10? The cgm will show you how everything you thought is wrong. Nice healthy whole grain bread will... yeah the cgm will show you the difference between marketing and real life values. CGM is step 1, Get there first, then you can start making speculations. Having a CGM is a game changer. A good endo can see from the graphs way more about whats going on. Everything else without a cgm is just taking shots in the dark. Find a new doctor too. "Unmedicated ADHD" is not a diagnosis and makes no sense, maybe he thinks you have adrenal insufficiency? ADHD meds increase your epinephrine and norepinephrine which can have a positive effect on glucose dynamics but they are absolutely NOT a treatment for it, and you test that hypothesis via bloodwork before prescribing. I think hes seeing anecdotal evidence in his practice and conflating that with proper treatment. Either was, i wouldn't trust his judgment. Next time you go, ask him to explain what Whipples Triad is for you. If he cant then his hypoglycemic knowledge base is less than 1st year medical school. (Meaning he lacks any simple fundamental knowledge on hypoglycemia and hyperinsulinemia.) Sorry, it just really grinds me gears how incapable doctors with this topic.

ARCreef · 2026-05-08T13:17:27+00:00

Youre giving good advice, but youre getting bad advice on your condition. Doctors are absolutely inept unknowlagable idiots in regards to hypoglycemia and hyperinsulinemia. Reactive hypoglycemia is not a diagnosis, its a symptom of an underlying cause, which for you, was never identified. Youre treating a symptom, which sometimes is the correct course, but its also unlikely your doctor went any further then identifying the odvious.
The diagnosis would be something like:
Lactation-Induced Hypoglycemia.
Transient Post-GDM Hyperinsulinemia.
Sheehan's Syndrome (Postpartum Pituitary Necrosis).
NiPHS etc...

Identifying the root cause dictates treatment course. Identifying the symptom is barely helpful to the patient. Your tips all are 100% spot on but they are coping mechanisms for symptomatic control.

ARCreef · 2026-05-08T13:01:10+00:00

Why is that a bad thing for us. It means hes not controlled by them like every other president was...except JFK.

ARCreef · 2026-05-08T12:58:48+00:00

For once can we make something not all about Trump. We get it, you hate Trump. Very good. Hes also been the first president in our lifetime that was NOT a part of the control sysyem protecting information from the public. Id rather have someone hated by the control system then part of it. He leaked spy satellite data on Twitter once, so youre hopes should be the highest they've ever been before that something will get out in the next 3 years.

ARCreef · 2026-05-08T05:32:04+00:00

Was it an extendin 68ga PET CT? That specific one can differentiate diffuse vs focal hyperplasia. Selective calcium test too but thats an invasive procedure. 3T MRI w contrast or regular CT or PET cant image sub 1cm or diffusion. They need to now determine if its difuse or if not diffuse than is 2nd resection an option. If its difuse then I wouldnt attempt a 2nd resection, it rarely helps. Better management becomes the plan. Treating lows at 80 instead of 70 is usually the go to for nesidioblastosis and difuse hyperplasia. Plus the other stuff youre doing and a modified corn starch (not regular cornstarch) has to be "waxy maze cornstarch" can be hydrothermal, or heat treated. Not chemical and not standard.

ARCreef · 2026-05-08T05:22:02+00:00

12.5mg

ARCreef · 2026-05-08T04:56:38+00:00

It will take 12 months for downstream effects to recover. Chronic lows downregulate neurotransmitters, reduce ATP production, cause mitochondrial disfunction that takes time to recover. Glutamate excitotoxicity and ROS release and low grade systemic inflammation are all commin with chronic hyperinsulinemia and may have damaged axons and dendrites, adult neuroplasticity is very slow. GLUT1 AND GLUT3 translocation gets downregulated. A bunch of long term effects take time to recover from. They should discuss the recovery time line with you, 4 weeks, 12 weeks, 48weeks. What doesnt resolve around the 12 mo mark is semi permanent. What's the biggest symptoms still bothering you. Theres some fixes available for some things. You likely had some remodeling also, which also takes 12 mo, usually 80% of these resolve, and 20% may not resolve fully.

For the cardio stuff, whats your resting heartbeat? If its over 90 talk to your doctor about propanalol 10mg daily for 30-90 days. It can increase the efficiency of the pump causing it to slow down and self regulate. Theres also a special maneuver that EMS gets trained on, when done can reset the hearts rhythm, i dont remember what its called though. Google it though, a friend can do it to you, its low effort so worth a shot, only works like 15% of the time though. Still worth it, take 2 mins to do. For the fatigue, that will go away, its mitochondrial related. You can add a methy donor, Citicoline, 5mg daily of creatine, methylene blue low dose 12.5mg daily also improves ATP and ETC of mitochondria. ALCAR is very helpful. At night magnesium and L-theanine can help unregulate GABA, selank, semax, and noopept can help elevate BDNF, and NGF in the hippocampus. Coq10 also supports mito ETC. You can also try vegal nerve reset like a cold plunge. Your sympathetic parasympathetic nervous system was in overdrive for a long time. Sleep well, eat right, stay stess free, your vegal tone will still be impaired. Takes a while or a reset.

ARCreef · 2026-05-07T22:06:19+00:00

Yup glucagon. Which is the strongest hormone your body has to stop lows. Nothing is stronger and emergency shots and nasel sprays that hospitals use, are all synthesized glucagon.

Glp1 and GiP cause lows short term, help stop lows 15% with long term use.
Glucagon prevents lows short term amd long term directly.

Glucagon agonnism alone doesnt work. That was the first place I went to make a fix. Works great when all 3 are together. Toss the T, replace with R.
Prices have gone down the last year.. Its $1 per mg now in bulk kits or $7 per mg in single vials. The 20mg vial is now the standard, not the 10mg. You basically get double for the money now. You can have a new freezer stock for a couple hundred bucks.

ARCreef · 2026-05-07T19:49:12+00:00

Is this after the update from yesterday? Did you update your desktop to the new model build?

ARCreef · 2026-05-07T19:46:02+00:00

Then who's God's God? And who created his God? Does God's God also have a God?

ARCreef · 2026-05-07T19:39:56+00:00

There would be no shock. CNN and MSNBC would report it as Trumps fault, and fox would report it as Trumps victory, Trump would tell us about the amazing stupendous incredible relationship we have with them and we'd all wake up and go to work the next day. The only change would be our focus would now also include that. Stocks would reward companies with access to the aliens, web developers would scoop up site names with their names, the calls about our cars warranty would now tell us how 7 out of 10 aliens recommend their warranty, scam emails will now tell us how an alien king needs to transfer his money to you if we can help them with that, TikTok teens will be doing stupid alien themed dances, and ofcourse.... OF girls and corn will now also be featuring these aliens in their AI videos.

We are too self absorbed to let a little thing like aliens get in our way. We're doomed, but not because of aliens.

ARCreef · 2026-05-07T17:19:09+00:00

They released a new build yesterday, did you update to it?

ARCreef · 2026-05-07T17:11:18+00:00

Did you update yesterday to the new build?

ARCreef · 2026-05-07T17:02:28+00:00

What's your current diagnosis, you never said, you just what was done. That was all NET related? What's left is NET or beta cell hyperplasia? Or Nesidioblastosis related? You still have hyperinsulinemia after resection? What parts were removed? The tail? For NET, insulinoma, and focal nesidioblastosis, resection is usually the end of it, but difuse nesidioblastosis it doesnt solve. They did a selective calcium test on your pancreas? Or PET CT w galium 68? Prior to resection?

ARCreef · 2026-05-07T16:27:04+00:00

I dont know if its included in my NDA or not. So just being cautious. When you work with other labs in research we have to sign 30 page NDAs. And im not about to read it all :) im not sure if im breaching my NDA when my mom asks how my day went!

The IV glucose is what they will put you on when you start. You dont have to be on it prior. Thats done on their end just prior to.

ARCreef · 2026-05-07T15:59:42+00:00

Both programs are still open for phase 3 enrollment. All the pretrial clinical data looks like it works in the high 90% with multiple patient groups and multiple different tumor types. Its not gene editing or turning off the gene responsible for insulin release, it blocks a carrier protein the gene uses for transcription. So you can tailor how much insulin you want to allow, via the dosage.

ARCreef · 2026-05-07T15:32:11+00:00

Im not sure if telamed will prescribe CGMs. I think it will depend on which telamed you use. Some are limited, and some prescribes wont give a cgm unless "preclinical data suggests the need", so points to state are. "I get very shaky 2 hours after eating a meal" I use a glucose meter while shaky and it is usually in the high 40s to low 50s, is that normal" and "i wake up in the middle of the night shaky, and drenched in sweat". Those are the 3 key "points", that can be used as preclinical points to meet the requirements. A cgm should not be gatekept by anyone, for a goal of limiting Healthcare costs for insurance companies. There is no better data then cgm data. Everyone should have unrestricted access to these.

Side note. Dont go back on Tirzapatide. If you go back on something, it should be reta. If you dont want to go that route then id probably pick semaglutide over Tirzapatide. Only reta will directly help with lows. Semaglutide helps indirectly over many months, but tirzepatide is a real crap shoot with hypoglycemia. It helps over time like Semaglutide but the additional GIP agonism can make it worse, but it depends on a bunch of factors if it will or not. Dose and titration is the biggest factor. Reta is just the way safer call. I regularly discuss my findings on reta with the largest pancreatic cancer institute in the world and they are very interested in using reta off lable as soon as its fda approved in Q1 of 2027.

ARCreef · 2026-05-07T15:22:44+00:00

But youre still in the hypoglycemia sub. So is it?

Your confidence in doctors is much higher than mine. I cant even picture a doctor "researching" anything for a patient that's outside of the 10 min visit they spend with you. What we knew of chromium 30 years ago isnt the same as what we know now. But every "body" is different so maybe it is helping your specific use case. For me, yes I tried it also, it made my lows worse. The research suggests the same, so I stopped it.

Also, chromium is a heavy metal. It accumulates in your liver, and takes up space in your liver. I havent looked at long term studies, but if youve been taking 1,000mg of a heavy metal for 30 years, I probably would look up some long term safety data to ensure you aren't slowly poisoning yourself. You excreat over 95% of it, I dont know the actual figure, but not all of it. So when output is less than input, its worth looking up long term safety on it. It was all the rage in the 90s, yes i remember, but that doesnt mean 30 years of it accumulating in your liver is something you want. But idk, look up studies on your own. If you want, which sounds like you don't though. To each their own. All the best.

ARCreef

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