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Insight Welcomed on “Overheating” Issue

Working with a new to me GP on this issue but he doesn’t seem to have too much to go on so was wondering if the hive mind has any ideas/ insight.

For the past 3(?) years I’ve had these events that I refer to as overheating/ heat stroke as it’s the best description I have for it but I’m not sold that it’s actual heat stroke. It’s happened in moderate temps (low 80s with low humidity while sitting outside in the shade) and it’s happened in cool temps (50-60) with high humidity. It’s happened after doing physical activity and after doing nothing. I cannot consistently trigger it.

Symptoms in order of progression: sudden onset need-to-lay-down-now fatigue, being “out of it” and unable to hold or follow conversation, nausea, shivering OR sweating profusely, diarrhea, high-to-me HR (90-120 sitting/ lying down, normal resting is around 60-70 sometimes 55-60).

Everything resolves / improves when I take a boat load of electrolytes (pedalyte or equivalent, typically 2-3 bottles), lay down, and get out of the sun/ get into the AC. The electrolytes are key - I can lay down and get in AC but won’t improve without the electrolytes.

Not certain if related but started within the same time period: red + painful extremities in the “cold” (starting in the mid 50 degrees), hand swelling during exercise with the right significantly worse than left, low BP, and very randomly blistering very easily.

Doc did blood test in March which came back low in Anion Gap (2.6 with range being 5-15) and Alkaline Phosphatase S/P/B (44 with range being 50-136). Blood test from Dec was WNL for both these values. Doc also did an in office orthostatic BP and HR reading. I can’t remember the exact values but do remember my HR jumping 30bpm from lying to standing and my BP jumped as well. Dr said both the blood and orthostatic tests were normal (not sure I trust that opinion/ view - the HR and BP jump was enough to alarm the nurse and seems odd to me + the low blood test items aren’t “my normal” as those have never been low before).

Currently doing a 21 day heart monitor “test”. I tried to trigger the overheating by doing 10 miles of walking 3 days in a row in FL in 85-90degree heat and got a little light headed and dizzy but not a full “event”.

Any other tests I should ask for? Should I be getting a second opinion on the blood test? I have a follow up with the GP after the heart test is over so another month or so.

Sounds like dysautonomia to me. Could be POTS, could be NMH, could be another form. Depending on where you are, there may be a neuro-muscular specialist and/or a cardiologist who treats dysautonomia, but unfortunately, you can only really manage symptoms, but there are options there. My GPs have historically said to go to the specialist and they’ll renew medications as I request but aren’t well informed about the symptoms or how to treat. I was DXd after an epically bad stress test and later a tilt table test (absolutely hated that), my EKG and echo were normal but also considered in diagnosis. Blood work was only used to rule out anemia. Cold extremities could be dysautonomia, could be Raynaud’s (fairly normal, just annoying).
Some options for managing symptoms:

  • 4-6 salt pills a day (depending on weather and anticipated activity, I like Klaralyte)
  • drinking a crap ton of water. On a normal work-from-home day, I’m drinking 3.5-4L water, at least.
  • Beta blockers (doesn’t work for everyone, worked for me to bring my HR to a reasonable level, now a tough ride only gets me up to 185, not 230)
  • midodrine (gave me violent vomiting but for some people it’s great for the really bad days)
  • Fludrocortisone (haven’t tried it but works for some people for increasing blood volume/fluid retention)
  • Pyridostigmine (haven’t tried it since the beta blockers worked)
  • avoiding Spironolactone and some birth controls like Yaz that can increase fluid loss
  • compression tights/pants and belts, there are also compression gloves but hand swelling during exercise isn’t necessarily “abnormal” just annoying
  • L. Carnitine. My POTS doc recommended I start at 1500 mg and work up. It helps with brain fog. One of those “can’t hurt to try”.
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Do you have any symptoms when there’s no heat exposure or physical activity?

I had the same symptoms leading up to my Addison’s Disease diagnosis. Heat sensitivity (including passing out that I thought was heatstroke), electrolyte imbalance, nausea, fatigue, etc. It started out just happening when I got too hot or overexerted myself, but by the end it was all the time - I could barely walk across the room without getting tired. I was hospitalized twice with electrolyte imbalances in the “near fatal” levels. It took about 18 months from the initial onset of symptoms to getting my diagnosis, and I was only seriously sick for the last 6 months or so of that.

Bloodwork was what ultimately diagnosed me but it took a while for my levels to get low enough for a diagnosis to become apparent. I would definitely keep pushing if I were you - the first time I was hospitalized my sodium levels had tested in the low end of normal just a week earlier, and I went from feeling mildly bad to being admitted to the ICU in under 24 hours. I’m not trying to scare you, but I found that since my symptoms were so general it was hard to get taken seriously until I was literally on the brink of death.

I would definitely recommend seeing an endocrinologist if you can, they cover a wide range of conditions and at the very least should be able to help you rule some things out.

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Do you have a home blood pressure monitor? I would suggest checking your blood pressure during an episode if you can. I realize that may not be possible if the episode is too severe. I’m supposed to check mine when I have an intense dizzy spell during the night, but I can’t even put the monitor on when I get like that.

Rebecca

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You are in Florida?

The combination of heat and humidity in Florida can rapidly cause electrolyte imbalance. I have to admit I have similar symptoms and have to be exceedingly careful about exercise during summer temperatures.

I’ve had the doctor pull blood work and the only things I’ve tested low in on blood work are sodium and potassium. I just sweat so much I lose too much sodium and no amount of water is going to replace that. I have to stay on a high salt diet starting about now until October. I crave salt. I add it to everything when cooking. I buy electrolyte replacements and make sure to drink that during exercise.

I would test for tick borne diseases like Lyme and alpha gal syndrome.

Get blood work drawn immediately after exercise on a warm day and look at your electrolyte levels. Also take your weight before and after exercise so you know of you are dropping weight from water loss or drinking too much.

I’ve really cut back on summer activities. Today’s trail ride was 5 miles in 1 hour and 20 minutes. By summer I probably won’t be trail riding at all. I just can’t function in extreme heat and humidity.

I do have multiple health issues- I know I’m more adversely affected by the heat then the people I ride with. And the endurance riders must have an incredible body because I would have heat stroke before mile 4 on a warm day… Other people just seem to function better in hot weather. My senior friends went camping this week (with no A/C) and I didn’t even feel bad skipping. I know from prior experience that in this weather I would be overheating and miserable the entire time.

I have to ask about Addison’s disease. It does match a lot of my symptoms, but then again, it could just be me.

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Have you been tested for celiac disease?

This was sorta my thoughts but wasn’t sure if I was being a bit overdramatic about it. It doesn’t happen too frequently, especially now that I know what can trigger it, how to pull out of it, and the “warning signs” of being fatigued and out of it. But it’s definitely not normal.

@dmveventer Wow that is scary! I’m glad you were able to get a diagnosis. My mom has been pushing me to see an endo but I haven’t made the appointment yet. It’s going to the top of my to do list for Monday. I remember reading up on Addison as I thought it aligned with some of my symptoms as well. Currently it only happens in the heat, at least I think. I did have a weird gastro/ dehydration episode that put me in the ER in December that they never could find a cause for. It was about 2-3 weeks long so not food poisoning and virus/ bacterial infections were ruled out. I improved after IV electrolytes and IV Zofran. No issues since.

@RMJacobs I haven’t monitored or considered BP in the past! The Dec hospital visit was the first time low BP was mentioned. The ER nurses/ docs said it was likely due to the dehydration/ low electrolytes and weren’t concerned as I had no history. My follow up visits with the GP they remarked the low BP so it wasn’t a one off. I’ll have to try to measure it if I can trigger an event.

@4horses We were in FL for a trip, we’re back in IL now. It’s much cooler here at home (50-60 ish the next few weeks). I salt everything I eat too! I was worried it was too much but with the low BP and overheating thing I worry much less about it now. Whatever is the root cause is somehow related to electrolytes for sure. I just don’t understand why I lose them/ don’t retain them as well as a “normal” person. The weighing before and after is a great idea! I was wanting to know if there was some sort of electrolyte monitor lol. I’ll definitely ask about Lyme and such. We definitely get plenty of ticks here. I’ve cut back a lot too but it’s damn near impossible here. It’s hot and humid from April to October ish (it was 90 last week) and we have horses at home so I have to be out in it. I have cut back a TON on riding and such. I haven’t showed outside of winter in a few years and haven’t been on a lovely spring summer or fall trail in years as well.

@Jealoushe I have not. I haven’t noticed any issues with gluten products. I do feel better (generally) on a low carb diet but lived on carbs for many years lol.

I was thinking the same thing. sounds like POTS or another dysautonomia.

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Endocrinologists are in high demand and can have long wait lists so I would make the appointment ASAP. You can always cancel if you find an answer in the meantime. FWIW low BP is also an Addison’s symptom. I pretty much lived on electrolytes and Zofran in the months leading to my diagnosis so that also sounds very familiar.

On electrolytes, definitely go by your bloodwork and read the labels on whatever products you use! Not all electrolytes are created equal, and depending on your specific imbalance you could just make things worse. Addison’s causes low sodium but high potassium as the main problems, so I had to find electrolyte brands that had really high sodium content without going crazy on the potassium. LMNT is the best brand if you just need to get salt into your system without a bunch of other stuff. Also make sure you aren’t cancelling out the electrolytes by drinking too much plain water or other liquids without electrolytes - I was on water rations for a while which SUCKED but helped keep from diluting the ridiculous amount of salt pills I was taking to try to stay in a semi-normal range.

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sometimes with Celiac your body has trouble absorbing certain things. I think it’s worth a test if you’re looking to weed out potential causes.

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definitely see an endocrinologist! I have similar issues with heat and low blood pressure. I HAVE to preload with electrolytes before doing anything outside in the weather (or even exertion inside). I do not tolerate heat or humidity. But I will pee out everything I put in pretty quick. My body does not like to hold onto fluid or electrolytes… So I drink a lot of sports drinks, wear cooling clothes and have learned the warning signs when I’m getting close to a crisis, so I can get out of the sun and cool down.

From what I can figure, mine is a genetic thing, but it was exacerbated but an incident of heat exhaustion.

Hope you find a good answer!

I second @dmveventer, an appointment with an endocronoligist is in order. @dmveventer, I am a fellow Addison’s, nice to meet you! I’ve met a handful of horse people with it and we have a group over on Facebook.

Addison’s can be difficult to diagnose because 90% of the adrenal cortex has to be destroyed before you can diagnose it, so most of us are in pretty bad shape before we finally get it figured out. That and it’s so rare, many doctors don’t even have it on their radar.

Another thing to keep in mind is that it might not be just one thing. Autoimmune diseases tend to come in clusters: I have Addison’s, MS and Hashimoto’s. MS can cause heat intolerance, as well. Often symptoms of all three overlap.

My advice is to start doing your research so you have all the info you need to get a dx. I had to kick and scream for mine, the doctors would not take me seriously even though, at 37 years old I could barely climb a flight of stairs. POTS was a definitely symptom for me, as well.

Feel free to DM me if you would like me to point you to some resources on how to get an Addison’s dx, there are a few Facebook groups out there that are a wealth of information.

Best of luck to you!

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Wondering if you’ve had any luck with diagnosis. Also wanted to mention checking your thyroid levels. Those being off can send everything haywire. It’s made me severely beat intolerant to the point I have to have a fan on me even in cooler temperatures