Unravelling a personal health mystery
October 13, 2023 11:10 AM   Subscribe

YANMD and I have spoken to three, none of whom have any solid ideas. While I await some weeks-off testing, I'm hoping to hear of something that can help to uncover an explanation or help find some much needed relief, or guide me on how to more effectively manage my medical providers. [Structured] wall-of-text to follow.

This Ask is a follow-on to another recent AskMe which was a bit all over the place ; I hope to make this one more clear and better organized. First I'll describe what's been going on ; then I'll share what doctors have said, tests ordered etc. . Thanks in advance for taking a look and sharing any experiences that are similar to what I'm reporting.

THE PROBLEM
Since a day in mid-September, I (49M) have been experiencing (daily) frequent bouts of all of the following at once:
1) Sudden strong hunger
2) Feeling of fatigue, exhaustion
3) Drop in mental horsepower ; difficulty deciding, thinking clearly
4) Slight headache
5) Slight nausea - yes simultaneous with strong 'need' to eat

This happens every 60-90 minutes starting in the morning and throughout the day (until the Evening - more on that below)
:: If I don't stop to eat, all of the above get worse. I'll quickly become very scattered and incapable of managing much besides sitting down.
:: When I eat, things will slowly get somewhat better, temporarily (until another 60-90 minutes go by).
:: By "better" I don't mean good-as-new ; it's just that the hunger dies down for a little while, the fatigue and mental impairment ease up a bit, and I no longer feel like I am circling the drain unless I eat. Until another 60-90 minutes pass, then I'm back in the same boat.
:: It can be extremely unpleasant to eat. Food is somewhat-to-barely palatable, I have to force myself to eat. Except in The Evening.
:: When I eat, it's a portion of protein and some complex carbs, often multigrain bread/toast. If instead i have something sweet (e.g. peanut butter and honey on multigrain), as twice I foolishly did , then the experience becomes almost instantly 10x worse (with the exception of the mention in The Evening, below).

With one exception, I can't think of anything that had changed around the time this started, and that one thing has been discounted by two doctors as not worth following up on. That change was a small increase in medication (lithium), hence the mention below of thyroid panel.

DO YOU DRINK A LOT OF WATER?
Yes.

HAS THIS EVER HAPPENED BEFORE?
"Eh, kinda, sorta, but not like this." Instances _somewhat_ similar to this have happened over the years, though without the same intensity and NOT continuing to occur with such frequency, throughout the day or day after day; and no need to eat the 8 times per day like I now sometimes need to.

I have known for decades that I'm sensitive to sugar, especially in the morning. For almost forever there has been no way I could start my day with a donut or muffin; in order to not crash almost immediately, there must be protein, there must be fat, there mustn't be sugar. FWIW.

THE EVENING
Not always but often, the evening can be a completely different story. As the late afternoon goes on the intensity and urgency of 1-5 above is sometimes dialed down quite a bit. Often I'm able to have a proper meal for dinner and thoroughly enjoy it. After I have such a meal, I feel no need to eat again until the next morning. A couple times after dinner I've had something sweet, and had no negative reaction to it whatsoever. Sometimes in the evening after I will feel "completely normal", none of the fatigue etc. from earlier in the day, will go to the gym and have a good workout; have energy, feel good exerting myself. But then the next morning, the doom cycle begins again.

THE DOCTORS, THE TESTS
I've talked about this with my PCP (who ordered some labs then went on leave), an NP in her practice (twice), and my psychiatrist (prescriber of small lithium change)

: Full metabolic panel run. Hemoglobin A1C was 5.4
: Thyroid (TSH/T3/T4) panel came back normal. Results shared with psychiatrist, had no concern.
: NP has ordered Lipase test (normal) and a full abdominal ultrasound (looking for gallstones, I believe, perhaps also looking at pancreas?) that's to happen in a couple weeks
: Only other recent test with result outside the normal range was a high albumin/globulin ratio (2.7; range 1.2-2.2), which Drs said was of no concern.
: Throwin' it out there: I have for years had Calcium levels consistently on the high end of the range, very occasionally above the upper limit of normal, but noone except one Dr ten years ago has ever taken notice of it. AFAIK what I'm experiencing doesn't seem to be in line with hypoparathyroidism, but mentioning it just in case someone else thinks it might be normal.

Also FWIW, I've lost some weight, roughly 2 pounds since end of approx. August

WHAT IDEAS DO THE DOCTORS HAVE

Only the NP would posit any theories. She mentioned Reactive Hypoglycemia but she did not seemed convinced at all. Also, since this can happen soon after waking up and prior to eating, I'm not sure what my body would be reacting to in this way.

I'm told I'm not pre-diabetic.


MEDICATIONS AND SUPPLEMENTS

Ritalin / Methylphenidate : 10mg 1-2x / day as needed
Lithium Carbonate 1050mg /day
Seroquel / Quetiapine Fumarate 50mg /day
Wellbutrin / Bupropion 150mg /day
Aspirin 81mg /day
Atorvastatin 10mg /day

Theanine 200mg at night
Magnesium 420mg at night
Vitamin D3 25mcg
Vitamin C 1000mg
Folate (methly-) 400mcg
Ubiquinol 100mg
Life Extension Ultra Prostate Formula - many things
https://www.lifeextension.com/vitamins-supplements/item02029/ultra-prostate-formula
Zinc (L-Methionine sulfate) 15mg
Omega3 690mg


HOW'S YOUR SLEEP?

Solid. Assessment supported by multiple sleep-monitoring devices and one observant and fantastic proximate human.

Thanks for reading this far and for experiences and insights you may want to share.
posted by jerome powell buys his sweatbands in bulk only to Health & Fitness (21 answers total) 1 user marked this as a favorite
 
I'm so sorry; this sounds miserable for you!

A glucose tolerance test might be helpful?

One possibility is that the lithium is increasing your hunger and your body for whatever reason has decided to be super dramatic about it. This will happen to me sometimes when I'm not at my best; my body will demand food and if I don't provide it will get shaky and headachey and weird even though objectively it should not (because I'd eaten plenty).
posted by metasarah at 11:48 AM on October 13, 2023 [4 favorites]


I don't have medical diagnosis advice because I tend not to have good luck with providers. However, I would wonder if you could try setting a timer and eating small amounts on cue to see if you could at least minimize your symptoms while you work through this. Another option could be meal replacement shakes you could sip.

I get a similar phenomenon when I'm essentially running on empty (working late, skipping meals, not getting sleep) and feel high energy until my body crashes. It sounds like you don't have the same cause, but it may be creating the same effect, where the hunger signals aren't getting in until too late. I am also very sensitive to sugar, especially in the mornings.
posted by Narrow Harbor at 12:44 PM on October 13, 2023


Forgive me if I missed this, but have you tested your blood sugar when this happens? That seems like the easiest way to figure out if it’s a blood sugar issue and you can do it from home.
posted by Amy93 at 12:55 PM on October 13, 2023 [2 favorites]


Response by poster: Thanks for the replies thusfar.

@Amy93, good question. I haven't tested my blood sugar during this recent situation. I did many years ago, when the less-intense less-persistent version of this was happening. I shared a few days of readings with an endocrinologist, who did not find them compelling. I don't have those readings in front of me but I recall
1) One or two readings that were very low (50ish?)
2) no readings that were in the high / diabetic range
3) at least one instance where the value reported when I was feeling terrible was the same exact value reported at another time when feeling fine

But memory is not 100% reliable. Perhaps I should get a new blood glucose monitor thing.
Thanks.
posted by jerome powell buys his sweatbands in bulk only at 1:16 PM on October 13, 2023


For these sorts of questions, I always recommend CrowdMed. You upload your medical records and set a reward. Then "medical detectives" start to research your symptoms, and the detective who gets the correct diagnosis gets your reward. You can read about CrowdMed here, here, and here.
posted by alex1965 at 1:43 PM on October 13, 2023


This is a totally talking out of my ass suggestion, but how long have you been taking the Ultra prostate? It has saw palmetto in it which can cause-Side effects are very rare, although headache, nausea, diarrhea, and dizziness have been reported. (source)
It also interacts with Aspirin, though i dont think it would be causing those symptoms
Also the stinging nettle can interact with your blood sugar/pressure in odd ways
I know less than nothing about that brand, but I do known in the US they aren't regulated, so who knows how much of any particular supplement is actually in each pill.
Did a Dr who knows all your other medication suggest that supplement?
posted by zara at 1:58 PM on October 13, 2023 [5 favorites]


Best answer: THE PROBLEM
Since a day in mid-September, I (49M) have been experiencing (daily) frequent bouts of all of the following at once:
1) Sudden strong hunger
2) Feeling of fatigue, exhaustion
3) Drop in mental horsepower ; difficulty deciding, thinking clearly
4) Slight headache


These all sound like blood sugar crash symptoms, and Seroquel, along with other atypical antipsychotics, has been associated with blood sugar regulation problems including development of type 2 diabetes.

Seroquel and lithium are often prescribed together to treat bipolar, and the combination is more effective than either one alone.

So maybe the increase in lithium is synergistically increasing the impact of the Seroquel on your blood sugar levels.
posted by jamjam at 2:27 PM on October 13, 2023 [6 favorites]


That’s some serious polypharmacy. I’m giving the two docs that said that changing your meds does not have this side effect some serious side eye.

Have you considered upping either your Wellbutrin or Ritalin to compensate? Or swapping some or all of the lithium with Lamotrigine?
posted by shock muppet at 3:55 PM on October 13, 2023 [2 favorites]


I’d put money on the lithium. (However lamotrigine is not necessarily going to improve GI problems, it might just give you new ones like nausea and lack of appetite, and worse memory).

Consider adding a fibre supplement like Metamucil to help control blood sugar and appetite (and cholesterol).
posted by cotton dress sock at 4:12 PM on October 13, 2023


Out of curiosity what were your highest readings? 50s is low for blood sugar and could explain those symptoms.


https://www.healthline.com/health/hypoglycemia-without-diabetes#diagnosis
posted by oneear at 4:26 PM on October 13, 2023


When I was taking a smaller dose of seroquel I would get ridiculously hungry about 20 minutes after taking it. What time of day do you take it? If you feel comfortable experimenting with not taking it, you could see how you feel.
posted by mai at 4:41 PM on October 13, 2023


Response by poster: Thanks, again, for the input and ideas.

@JamJam - indeed the two are prescribed for me for bipolar (2) and have been extremely effective. I've always hated the seroquel but without it I don't sleep and soon start sliding towards mania. Very interesting to read about its effects on blood sugar, I had no idea. Going to ask my psych about that. THANK YOU.

@Cotton Dress Sock, I'd sincerely love to understand more about the confidence around the lithium being a causal factor. My prescriber seems to have had a lot of experience with lithium clinically and has authored a couple papers on it, but I think it's been a few years since he spent time in the lab so maybe there's some more recent research he hasn't heard about. Love to hear what you know! Also: been taking psyllium husks daily for many months; will keep it up, maybe increase. Thx.

@ Shock Muppet: Psych actually reduced my Wellbutrin down from 300mg, a couple weeks after All This started. He was considering reducing the lithium back down to 900mg but that 150mg change was the only one of many (we'd tried several other meds) that produced a positive outcome.

@Oneear - thanks for that. Sounds like I need to figure out what glucose monitor to buy. I remember that aforementioned earlier endocrinologist saying that their accuracy range is pretty wide. Hopefully they have improved since then.

@Mai : Iiiiiiinteresting. Thanks for that. I take the seroquel at night 1 hr before bed. Stopping is very risky, per the above, but maybe I can try half a dose for a couple nights over the weekend and see what happens. What's the worst that can happen, lack of sleep and hypomania? #gallowshumor

Thanks again, all.
posted by jerome powell buys his sweatbands in bulk only at 4:49 PM on October 13, 2023


Mostly because it’s the only change you reported.

It could also be only an indirect cause that might be tweakable or optimizable - for example, some of your new symptoms can be due to gastritis (which lithium, or many other medications could cause, maybe not even with a dose change, just after years of exposure. Or, gastritis could happen and be totally unrelated.)

Was gastritis considered?
posted by cotton dress sock at 5:11 PM on October 13, 2023 [1 favorite]


Response by poster: Interesting. The word gastritis didn't come up, but the NP suggested "maybe" I should try prilosec for a couple weeks, though I don't remember why she did. Maybe for gastritis? I am definitely not having an experience that feels anything like indigestion or heartburn, and that slightly-nauseas feeling goes away soon after I get some food in me. I will read up more on gastritis and maybe just try the prilosec.
posted by jerome powell buys his sweatbands in bulk only at 5:32 PM on October 13, 2023


I also blame the lithium. I get side effects on sub therapeutic doses, I get unilateral tremors, my doctor shrugs and sends antidotes. “You seem to be sensitive to side effects.” 🤷‍♀️ When you’re at 4+ drugs in your system, you’ve exited any evidence based treatment algorithm and it’s all art (or clinical experience), not science.

Wellbutrin has been a good appetite suppressant for me, wonder if you got hungrier? Ritalin also suppresses appetite. I don’t know the indication for raising lithium, but if it’s depression related you could try TMS instead and not tinker with drugs. For sleep you could try trazodone instead of seroquel.
posted by shock muppet at 5:35 PM on October 13, 2023 [1 favorite]


What does indigestion usually feel like for you and/or what has it felt like in the past? This would only address 1 and 5 on your list, but FWIW, heartburn usually feels like hunger to me, especially during the day when I'm sitting up and walking around etc. It feels so much like hunger, in fact, that like you, I'll eat in an attempt to resolve it, only to end up feeling more blah and nauseous, and also still "hungry". But it's not hunger, it's heartburn/indigestion. (I get it rarely enough that I forget what it's like every damn time.)

Before messing around with your other meds, I'd suggest you try the prilosec first. I'd also suggest ditching the Prostate Formula supplement and seeing if you see any improvement, but I'm very suspicious of any supplements. They just aren't well-regulated enough, and given how many other medications you're taking, I'd be really concerned about weird and/or understudied drug interactions.

Some other potential things to investigate re your supplements: when are you taking the zinc? That can sometimes cause stomach upset/nausea. 420 mg of magnesium is the full RDA for an adult male over 30. The Tolerable Upper Intake Level, the maximum daily intake unlikely to cause harmful effects, is 350 mg from supplements only. You're over that, and with diet included, probably well over the RDA. If you're not taking it for migraine prevention/protection, maybe try easing off that for a while, see if it helps any symptoms?
posted by yasaman at 11:33 PM on October 13, 2023 [2 favorites]


When I was trying to track down a problem, a friend of mine who is diabetic recommended the Contour Next One glucose monitor. She had done a great deal of research into their accuracy and, as of a couple of years ago, this was the best one that's widely available in the US. The monitor, test strips and extra lancets can be had at your local drugstore. She suggested that I not buy the strips through online retailers since they are more likely to be stored in such a way that affects their accuracy.
posted by ruddlehead at 8:34 AM on October 14, 2023


Best answer: Seroquel was the one that jumped out at me. It is known for impacting blood sugar. It also made me absurdly hungry. Also of course can be super sedating.

Do you take the seroquel at night? If so, that may be why you sometimes see improvement around dinner time - presumably before your evening dose of seroquel if you take it before bed.

I would order a blood glucose monitor, and try testing first thing in AM (for fasting baseline), then definitely test before eating when you feel that super hungry/fatigue/whatever, and then 1 to 2 hours after eating.

But even if all seems normal with blood glucose monitor, definitely talk to your prescribing doctor about the seroquel. I'm not personally familiar with lithium, so not sure if it can have similar effects. Though with the timing of symptoms that's something to consider, especially since your seroquel dosage seems on the low end.

It's also possible that cutting back on wellbutrin has made it so that you feel the side effects of the seroquel/lithium more strongly, since wellbutrin can be activating and also reduce hunger.

Is there a reason you're taking so many supplements? Do you have documented deficiencies that require them? Considering the other meds you're on, I'd be cautious about over supplementing, without documented need for it.
posted by litera scripta manet at 5:14 PM on October 14, 2023


If you have an Apple Watch it might be worth running the ECG feature during an episode to see if there is any heart rhythm variation happening - given this seems to respond to food probably not, but the sudden onset of nausea, extreme tiredness, etc. are symptoms that CAN track with cardio problems.
posted by annie o at 6:49 PM on October 14, 2023


Response by poster: Update. For the past three nights i've halved the dose of Seroquel to 25mg. There has been a noticeable improvement in the days following. I'm still getting surprisingly hungry at times, and simultaneously not feeling like eating very much, but I've found relief from the frequent 'OMFG I need to eat right now' and coincident sudden major drop in energy, ability to think clearly, or focus. So not a complete solution but I'd call it a game changer. I spoke with my prescriber about it, he had no concerns about the lower dose, said I can always return to the increased dose as needed. Apparently that's A Thing people do. News to me.

THANK YOU to the couple of folks who commented on Seroquel. I never would have guessed.

I did also get a blood sugar monitor and collected a few days' worth of datapoints. My lowest reading (after nighttime fast) was 97 and highest (2.5 hours after eating) was 126. AFAICT these are indicative of "not reactive hypoglycemia".
posted by jerome powell buys his sweatbands in bulk only at 5:50 PM on October 19, 2023 [3 favorites]


Response by poster: Another update. Long story short, the benefits from lowering the seroquel were somewhat short lived. What [also?] seems to have helped was decreasing the dosage of Ritalin. I'm only taking 5mg 2x/day, and some days it's barely therapeutic, but I'm somehow finding that more manageable than the intense hunger. Just leaving a final note in case it might help someone in the future.
posted by jerome powell buys his sweatbands in bulk only at 9:59 PM on December 27, 2023


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