Dr. Hive - what is wrong with me?

[Kassia]

When I eat, I feel a heaviness in my head/eyes that makes me feel fuzzy and sleepy and sometimes I get muscle weakness and shaky as well.  I don't know if it's a blood sugar issue or a blood pressure issue or something else.  Has anyone else experienced this or does anyone know what this could be?  I have all kinds of weird test results and my doctor has referred me to a bunch of different specialists.  I have low sodium, low female hormones (hypothalamus dysfunction), elevated liver enzymes, and low white blood count.  I have terrible circulation to my fingers and have red swollen fingers with chilblains on one hand.  I suffer from constant fatigue but I also can't sleep much.  But the eating thing makes me absolutely miserable - sometimes it's so bad that I can barely function.  I eat small amounts of food all day long and get plenty of protein.  

 

[hippymamato3]

Postprandial hypotension? 

[Kassia]

1 minute ago, hippymamato3 said:

Postprandial hypotension? 

That was one thing I was wondering.  Do you know what kind of doctor I would see for that?  I think it's either blood pressure or blood sugar.  

[hippymamato3]

Cardiologist probably...I hope you can get it figured out soon! It sounds miserable!

[kbutton]

I just read about this the other day. Some of the symptoms fit: https://stanfordhealthcare.org/medical-conditions/bones-joints-and-muscles/scleroderma/types.html

[Harriet Vane]

Kassia I’m sorry you are suffering. I pray you find answers and relief.

[Tap]

I have postprandial hypotension. My symptoms aren't as significant as what you describe, but that doesn't mean you don't have it too. For me, I get exhausted after I eat and I feel like I am walking in water (takes purposeful effort to move my legs).  

The first thing my doctor had me try was to increase my salt intake all day long (not just when I felt bad) and to have caffeine with my meals. I can't have caffeine after 4pm or it keeps me awake, but having it before/during breakfast and lunch makes a huge difference for me. I was able to document the blood pressure changes myself that helped to lead to my diagnosis. I started randomly taking my bp through out the day. At specific times (first thing in am, at noon etc), when I felt great, and when I felt terrible. I started noticing I felt the worst 15 to 30 min after lunch (and after I get really stressed). 

My sodium levels are naturally low and I have pretty consistent bp of 80/120, so adding salt and caffeine weren't health risks for me. By monitoring my BP myself I also figured out that my bp numbers would get about 20 points apart when I felt poorly. It is called pulse pressure. The closer the numbers the more I noticed my symptoms. 

DD has POTS and has to have huge amounts of salt each day to regulate her blood pressure/heart rate. It seems like our body just doesn't store salt like it should and that missing component really causes major issues for us.

Good luck! 

[PeterPan]

On the off chance that it's connected to digestion, you could try food combining (arranging your foods to digest more easily) to see if that makes a difference. So you would eat at a given meal only fruits or only protein + low starch veges/grains or only high starch + low starch (no protein). 

I hope they figure out what's going on. Doesn't sound fun.

[fraidycat]

If you keep a food diary and rated symptom log, you may be able to narrow down if it's certain foods causing  stronger reactions. Carbs/sugars/starches may indicate an insulin/blood sugar issue. Or you may be able to ascertain an intolerance to certain foods like glucoses, nuts, red meat, gluten, eggs, nightshades, etc.

Your description sounds like what happens to me if I "get glutened". My head gets fuzzy like an old-school t.v. that can't pick up a signal, but also feels like it (my brain) is shaking or rocking back and forth like a boat on high waves and I can't focus my eyes properly.  So fuzzy and wavy head, getting weak and shaky... for about 10 - 15 minutes because at that point I fall asleep HARD because the fatigue hits like a Mack truck and I am knocked out for hours. Then I spend the next week dealing with the residual GI issues, achy joints, headaches, stuffiness, and overall fatigue. AKA: inflammation.

 

Edited April 10, 2021 by fraidycat
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[Kassia]

5 hours ago, Tap said:

 

The first thing my doctor had me try was to increase my salt intake all day long (not just when I felt bad) and to have caffeine with my meals. I can't have caffeine after 4pm or it keeps me awake, but having it before/during breakfast and lunch makes a huge difference for me. I was able to document the blood pressure changes myself that helped to lead to my diagnosis. I started randomly taking my bp through out the day. At specific times (first thing in am, at noon etc), when I felt great, and when I felt terrible. I started noticing I felt the worst 15 to 30 min after lunch (and after I get really stressed). 

My sodium levels are naturally low and I have pretty consistent bp of 80/120, so adding salt and caffeine weren't health risks for me. By monitoring my BP myself I also figured out that my bp numbers would get about 20 points apart when I felt poorly. It is called pulse pressure. The closer the numbers the more I noticed my symptoms. 

DD has POTS and has to have huge amounts of salt each day to regulate her blood pressure/heart rate. It seems like our body just doesn't store salt like it should and that missing component really causes major issues for us.

Thank you!  My sodium levels are very low and my BP is always on the low side so I have been advised to take salt tablets and increase sodium intake, and I do both.  I do drink caffeine early in the day and stop around 3pm.  My BP monitor doesn't work anymore (stupid junk!) so I don't know if I should buy a new one - I don't know how accurate the inexpensive home monitors are. 

 

 

 

5 hours ago, PeterPan said:

On the off chance that it's connected to digestion, you could try food combining (arranging your foods to digest more easily) to see if that makes a difference. So you would eat at a given meal only fruits or only protein + low starch veges/grains or only high starch + low starch (no protein). 

 

I've had two intestinal surgeries and I have wondered if that could affect digestion but it was large intestines so I don't know if that would make a difference.  I could see stomach surgery or small intestines causing issues but am doubtful that colon surgeries would cause digestive issues that suddenly.  

 

3 hours ago, fraidycat said:

If you keep a food diary and rated symptom log, you may be able to narrow down if it's certain foods causing  stronger reactions. Carbs/sugars/starches may indicate an insulin/blood sugar issue. Or you may be able to ascertain an intolerance to certain foods like glucoses, nuts, red meat, gluten, eggs, nightshades, etc.

Your description sounds like what happens to me if I "get glutened". My head gets fuzzy like an old-school t.v. that can't pick up a signal, but also feels like it (my brain) is shaking or rocking back and forth like a boat on high waves and I can't focus my eyes properly.  So fuzzy and wavy head, getting weak and shaky... for about 10 - 15 minutes because at that point I fall asleep HARD because the fatigue hits like a Mack truck and I am knocked out for hours. Then I spend the next week dealing with the residual GI issues, achy joints, headaches, stuffiness, and overall fatigue. AKA: inflammation.

 

Thanks!  Yes, your "glutened" reaction sounds similar to how I feel when this happens but it even happens when I eat pure protein (I eat eggs with one slice of cheese every day and it hits me hard then, too) or I eat peanut butter on a rice cake and it happens. 

 

[Kassia]

@Tap Do you have a problem in the shower?  I get the same feeling in the shower - very fuzzy with crushing sleepiness.  That's why I was suspecting a BP issue.  

 

[Clemsondana]

Could it be a histamine response with food?  There may be multiple things going on, but I have certain foods that cause a response if I eat too much of them.  There seem to be 2 different things - one his foods with histamine in them and the other is foods that induce histamines but aren't actually an allergy.  There are weird things like cross-reactivity - I can eat cucumbers except when certain allergens are present, for instance.  I am usually fine and when tested the only things that I didn't have allergies to was food.  🙂  But, if I eat the wrong combo, especially when it's a bad allergy time anyway, I can feel awful. Good luck!  

[Kanin]

Allergy testing seems like a good idea. If you're eating mostly the same foods every day, possibly a couple of them are not great for you. 

[Kassia]

44 minutes ago, Clemsondana said:

Could it be a histamine response with food?  There may be multiple things going on, but I have certain foods that cause a response if I eat too much of them.  There seem to be 2 different things - one his foods with histamine in them and the other is foods that induce histamines but aren't actually an allergy.  There are weird things like cross-reactivity - I can eat cucumbers except when certain allergens are present, for instance.  I am usually fine and when tested the only things that I didn't have allergies to was food.  🙂  But, if I eat the wrong combo, especially when it's a bad allergy time anyway, I can feel awful. Good luck!  

Thank you!  I've thought about that but it's a wide variety of foods that do it to me so I don't think that's it.  I have thought about experimenting with things like ice cream and pizza.  But if they don't cause a reaction, then what does that mean - do I live on ice cream and pizza?  It's all so confusing.

 

[Kassia]

1 minute ago, Kanin said:

Allergy testing seems like a good idea. If you're eating mostly the same foods every day, possibly a couple of them are not great for you. 

I do eat the same foods every day and was wondering if I should try different things to see what happens.

[Kanin]

3 hours ago, Kassia said:

I do eat the same foods every day and was wondering if I should try different things to see what happens.

I eat the same foods every day, too - I think most of us do! I saw an ad on Facebook for a food sensitivity test - Everlywell, maybe? - that looks intriguing. You prick your finger and they test something like 204 foods. Elimination diets are really helpful, but kind of hard to do because you really have to strip down to a pretty small set of foods, and then slowly build up. If you  cave and add things back too fast or too many at the same time, you can't tell what's causing what. 

Have you ever taken out certain common problem foods before? Off the top of my head - gluten, dairy, eggs, nightshades, nuts. 

[Kanin]

You could buy a blood sugar meter at Target or Walmart. They're cheap and easy to use. 

[Spryte]

No ideas, just wanted to say I hope you find answers soon!  Mystery health issues are the pits.

[Kassia]

39 minutes ago, Kanin said:

 I saw an ad on Facebook for a food sensitivity test - Everlywell, maybe? 

Have you ever taken out certain common problem foods before? Off the top of my head - gluten, dairy, eggs, nightshades, nuts. 

 

39 minutes ago, Kanin said:

You could buy a blood sugar meter at Target or Walmart. They're cheap and easy to use. 

 

I'm just overwhelmed right now with so many things to buy to rule things out.  I've already seen a couple of specialists and had an ultrasound.  My doctor wants me to have an MRI and I've been referred to 5 other specialists.  My blood pressure monitor isn't working anymore so I should replace that.  I think a glucose monitor would be good and the food sensitivity test is a great idea, but...how much am I going to end up spending in the end to figure this out?  It's so frustrating and expensive.  I feel really guilty about the cost.  I had some major health issues for a couple of years that cost us a lot of money and I thought we were done with my expenses for a while.  😞

 

[Clemsondana]

6 hours ago, Kassia said:

Thank you!  I've thought about that but it's a wide variety of foods that do it to me so I don't think that's it.  I have thought about experimenting with things like ice cream and pizza.  But if they don't cause a reaction, then what does that mean - do I live on ice cream and pizza?  It's all so confusing.

 

I limit what foods I eat together...like, tomatoes and processed meats and cucumbers and food that's been sitting out longer and cheeses and....can all cause problems.  So, if I have a BLT I don't also have a cucumber salad.  Indian food causes issues for me (I"m not sure what component it is...probably a combo or a spice) so when I eat it I'm careful about how much I eat and I don't have any other triggers that day.  I'm more careful on days that I'm already dealing with bad allergies.  The thing about histamines is that sometimes it's not a food allergy that will show up in testing.  And, often it's a dose problem - you only feel bad if you get too much histamine circulating so it is a combo of what you eat and what other environmental allergens you're dealing with.  But, there are lists if you search 'histamine foods' so you might get some ideas about things to avoid.  

[Kanin]

2 hours ago, Kassia said:

 

 

I'm just overwhelmed right now with so many things to buy to rule things out.  I've already seen a couple of specialists and had an ultrasound.  My doctor wants me to have an MRI and I've been referred to 5 other specialists.  My blood pressure monitor isn't working anymore so I should replace that.  I think a glucose monitor would be good and the food sensitivity test is a great idea, but...how much am I going to end up spending in the end to figure this out?  It's so frustrating and expensive.  I feel really guilty about the cost.  I had some major health issues for a couple of years that cost us a lot of money and I thought we were done with my expenses for a while.  😞

 

I get it 😞 So expensive. You could try the food experiment on your own. Oh, and I meant to say - my DH had almost immediate relief from his long-term stomach issues when he stopped eating grains (along with the other stuff I mentioned above). Even white rice bothers him apparently! So weird. So it might not be the foods you expect. 

Of course, may not be food related at all. But worth a try maybe and not too expensive to eat differently for a bit, hopefully. 

[Kassia]

6 minutes ago, Kanin said:

I get it 😞 So expensive. You could try the food experiment on your own. Oh, and I meant to say - my DH had almost immediate relief from his long-term stomach issues when he stopped eating grains (along with the other stuff I mentioned above). Even white rice bothers him apparently! So weird. So it might not be the foods you expect. 

Of course, may not be food related at all. But worth a try maybe and not too expensive to eat differently for a bit, hopefully. 

Thank you!  I'm glad your DH got relief quickly.  For me, it's anything I eat.  It's like the act of eating causes it to happen which is why I suspect it is blood sugar or pressure related.  I need to try a totally different diet and see if that makes any difference.  

[Harriet Vane]

3 hours ago, Kassia said:

 

 

I'm just overwhelmed right now with so many things to buy to rule things out.  I've already seen a couple of specialists and had an ultrasound.  My doctor wants me to have an MRI and I've been referred to 5 other specialists.  My blood pressure monitor isn't working anymore so I should replace that.  I think a glucose monitor would be good and the food sensitivity test is a great idea, but...how much am I going to end up spending in the end to figure this out?  It's so frustrating and expensive.  I feel really guilty about the cost.  I had some major health issues for a couple of years that cost us a lot of money and I thought we were done with my expenses for a while.  😞

 

Just commiserating. I hear ya. I have had a similar journey--I spent more than a decade trying to get answers for joint pain and injuries, and finally received a diagnosis of EDS. Then I had a life-threatening abdominal infection with sepsis and it was a whole new body after that. Soooo many layers to figure out, and some doctors were actually not helpful or even downright dismissive and obstructive. The most helpful of them would only look at one tiny piece at a time. It has been through sheer dogged persistence and through the expenditure of a ton of money that I have been able to address a portion of what was broken through that awful illness. I, too, feel guilty about the cost and I hate the attention it takes from the rest of life and family life. 

You are worth it. Finding answers is worth it. Information leads you to solutions.

Hugs for you. 

[Kassia]

Thank you @Harriet Vane   I have a long history of receiving terrible, incorrect,  and sometimes dangerously incompetent medical care and am wary of seeing any doctors because it almost always seems like a waste of time and money.  It's ridiculous that doctors can charge for giving bad - or even dangerous - medical advice.  

I'm sorry you had to go through so much to get answers and proper treatment.  I hope you are much better now.  Thank you again.  ❤️

[Harriet Vane]

48 minutes ago, Kassia said:

Thank you!  I'm glad your DH got relief quickly.  For me, it's anything I eat.  It's like the act of eating causes it to happen which is why I suspect it is blood sugar or pressure related.  I need to try a totally different diet and see if that makes any difference.  

The doctor who has helped me the most advocates stripping out the four foods that cause the most food allergies and intolerances, AND he advises stripping out processed foods and cutting down sugar drastically. The four foods are gluten, milk products, soy products, and corn. Then after a minimum of three months, you can try adding things back in to see how you do. 

(In my case, we know that I am gluten intolerant and lactose intolerant, so those will stay out permanently. But with continued healing, I am hopeful that I will add back in corn and soy products this summer.)

 

[Harriet Vane]

2 minutes ago, Kassia said:

Thank you @Harriet Vane   I have a long history of receiving terrible, incorrect,  and sometimes dangerously incompetent medical care and am wary of seeing any doctors because it almost always seems like a waste of time and money.  It's ridiculous that doctors can charge for giving bad - or even dangerous - medical advice.  

I'm sorry you had to go through so much to get answers and proper treatment.  I hope you are much better now.  Thank you again.  ❤️

My goodness! Yes, this has been the case for me as well. 

I am much better now. Much better. Not perfect by any stretch--there are some things that will always be dysfunctional, especially with aging--but so much stronger and in much better condition. 

I pray you can find the answers you need as well. 

[Tap]

The eating discomfort is interesting in your story. Maybe talking about it more will help us figure it out.

Does the act of eating cause the discomfort or do you feel it starting when you are prepping the food as well? Does it happen on the first bite, during or after eating? Does it change anything if you have to stand for a while to prep the meal? How about if you just walk in the kitchen and have something with minor prep like a piece of fruit or premade snack? Does it happen with each meal? How does it make you feel? Does it make you want to walk around because you don't feel good, like you want to vomit, like you want to lie down etc. 

Do you have any bad feeling around eating? Do you have any food eating disorders that you are trying to overcome that may increase anxiety around food? (feel free to skip this question if it is hard for you to answer)

Do you usually drink with a meal? Do you drink the same thing every time or does it vary? Are you generally well hydrated or do you let your self get dehydrated and then drink a lot all at once? Does drinking have the same effect of not feeling well, if you don't have food with it?

When you say you eat the same things all the time, is that a generalization or a literal topic. Like do you eat exactly the same thing each day or just an approximation? 

[Kassia]

14 minutes ago, Tap said:

The eating discomfort is interesting in your story. Maybe talking about it more will help us figure it out.

Does the act of eating cause the discomfort or do you feel it starting when you are prepping the food as well? Does it happen on the first bite, during or after eating? Does it change anything if you have to stand for a while to prep the meal? How about if you just walk in the kitchen and have something with minor prep like a piece of fruit or premade snack? Does it happen with each meal? How does it make you feel? Does it make you want to walk around because you don't feel good, like you want to vomit, like you want to lie down etc. 

Do you have any bad feeling around eating? Do you have any food eating disorders that you are trying to overcome that may increase anxiety around food? (feel free to skip this question if it is hard for you to answer)

Do you usually drink with a meal? Do you drink the same thing every time or does it vary? Are you generally well hydrated or do you let your self get dehydrated and then drink a lot all at once? Does drinking have the same effect of not feeling well, if you don't have food with it?

When you say you eat the same things all the time, is that a generalization or a literal topic. Like do you eat exactly the same thing each day or just an approximation? 

Thank you so much, Tap.  I'll try and answer your questions.

I feel fine when prepping the food.  I start feeling fuzzy when eating the food and then really bad when I'm done.  It's mostly a crushing feeling of fatigue and my face feels weird - almost tingly - and my eyes get very heavy.  My brain feels off, too.  I also feel physically weaker but it's mostly the feelings in my head - the fatigue and the weird feelings.  I can barely keep my eyes open sometimes.  

I do struggle with disordered eating but that's been my whole life and this has been in the past few years and seems to have gotten even worse recently.  I can't say for sure when it started.  I did have two colectomies in 6/18 and 6/19.  I don't think it has anything to do with my disordered eating issues but maybe from the colectomies?  I don't know.  I've also been diagnosed with hypothalamus dysfunction (I can't remember if I posted that earlier).  

I don't drink with meals but drink enormous amounts all day.  I saw a kidney doctor last year due to the low sodium (she was a total quack, though) and she told me I need to cut down my fluid consumption (haven't done) and to supplement with sodium tablets (I do this).  I'm always thirsty and, for some reason, the drinking seems to make my head feel clearer so I always have something to drink when I get that awful feeling. 

I eat the exact same foods at the exact same times most days (this probably has more to do with my disordered eating because I'm afraid to go off my plan and those foods feel safer to me).  I eat different amounts of those foods but I try to stick with those foods.  Some days I'll just indulge in treats and go "off plan" - those are the days I need to pay attention to and see if I feel any different.

This has become debilitating  and I feel like such a burden to DH.  

 

[Tap]

1 hour ago, Kassia said:

Thank you so much, Tap.  I'll try and answer your questions.

I feel fine when prepping the food.  I start feeling fuzzy when eating the food and then really bad when I'm done.  It's mostly a crushing feeling of fatigue and my face feels weird - almost tingly - and my eyes get very heavy.  My brain feels off, too.  I also feel physically weaker but it's mostly the feelings in my head - the fatigue and the weird feelings.  I can barely keep my eyes open sometimes.  

I do struggle with disordered eating but that's been my whole life and this has been in the past few years and seems to have gotten even worse recently.  I can't say for sure when it started.  I did have two colectomies in 6/18 and 6/19.  I don't think it has anything to do with my disordered eating issues but maybe from the colectomies?  I don't know.  I've also been diagnosed with hypothalamus dysfunction (I can't remember if I posted that earlier).  

I don't drink with meals but drink enormous amounts all day.  I saw a kidney doctor last year due to the low sodium (she was a total quack, though) and she told me I need to cut down my fluid consumption (haven't done) and to supplement with sodium tablets (I do this).  I'm always thirsty and, for some reason, the drinking seems to make my head feel clearer so I always have something to drink when I get that awful feeling. 

I eat the exact same foods at the exact same times most days (this probably has more to do with my disordered eating because I'm afraid to go off my plan and those foods feel safer to me).  I eat different amounts of those foods but I try to stick with those foods.  Some days I'll just indulge in treats and go "off plan" - those are the days I need to pay attention to and see if I feel any different.

This has become debilitating  and I feel like such a burden to DH.  

 

Do you have a specialist you see for your disordered eating? I wonder if your restricted diet and colectomies could be part of the puzzle, that may be blocking symptoms that a PCP would be looking for. Maybe an eating specialist maybe able to help you figure this out. If you are having food related health issues, someone who can work with you to help identify how you relate to food, and how that food fuels your body in a healthy way, may be useful.

I may not be explaining it well but let me use an example to help. DD has POTS when she saw a cardiologist he asked if she felt dizzy sometimes. She said no. Once we started treating her POTS and she got some symptom relief, she realized she was Always dizzy. It was just so normal to her, she didn't realize that not everyone felt that way all the time. When he asked her if she felt dizzy, she thought he meant 'little kid spinning circles till they fall down dizzy.' Being dizzy is a primary symptoms of POTS, so by her saying she didn't feel dizzy, it could have stalled her diagnosis.  Another example: She started drinking wine at about 18yo. Since it wasn't legal for her to drink it then, she didn't tell me when we were tracking her foods looking for allergies. We thought her hives were stress related for a long time.  Since she didn't react to grapes, she didn't think the hives were wine related. But after a full year of hives, and her telling me she was drinking it, we finally figured out that she reacts to the sulfites in wine and dried fruit. She can have any fresh fruits, but not all dried fruits due to the preservatives they use. It is the chemical, not the food she reacts to. As far as the stress-hives idea....she would drink wine after finals-parties with her friends, or snack on trail mix when studying for finals. It wasn't the stress causing the hives, it was the stressful event/correlation to having more dried food/wine that was causing it.   There are several other food related issues she has, that weren't significant enough to identify when she was eating them. Once she stopped eating them, she realized how sick she was on those foods. She had to get rid of the symptoms, to identify individual components. 

I wonder if an eating specialist can help you identify if there is a correlation you aren't seeing. I would want to see someone who understands disordered eating, but also is a solid dietician. My thought process is that this person may be able to ask you questions about your eating, that a regular doctor may not think to ask. 

I can tell you one thing, DD does way better drinking NUUN electrolytes than taking salt tabs. She drinks 1.25 to 1.5 gallons of water a day. She has to supplement not just salt, but electrolytes. If you are only supplementing with salt tabs, you may be low on electrolytes if you drink an excessive amount of water a day. 

Good luck!!!  I really hope you feel better soon and it is something super simple.... like a reaction to unsalted lima beans. And all you have to do is stop eating those gross little things...and you will feel lots better! HAHA 🙂 

[Kassia]

@TapThank you so much for your thoughtful response!  I appreciate it very much.  I have no good doctors, which is part of the reason why I am feeling so hopeless and depressed about this.  I've just had awful experiences with doctors and don't want to go through that anymore.  Especially when it's so expensive to only be misdiagnosed and/or given bad medical advice.  My PCP is awful - I am disgusted with her and won't go back to her again.  DH's PCP (in our same group) seems better so maybe I could start with him but don't know if it would be awkward since the doctors practice in the same small group.  

Can you share where you buy the NUUN electrolytes?  I didn't know if there's a best place to get them before I start looking.  

Thank you again!!  

 

[kbutton]

On 4/9/2021 at 6:31 PM, Kassia said:

I have low sodium, low female hormones (hypothalamus dysfunction), elevated liver enzymes, and low white blood count.  I have terrible circulation to my fingers and have red swollen fingers with chilblains on one hand. 

Truthfully, I am way more worried about this stuff than the eating problem. 

Did your low female hormones happen over time? Have you ever had post-partum hemorrhage? A quick google search says that hypothalamus might explain a LOT of your symptoms, including the eating problems. https://www.intechopen.com/books/hypothalamus-in-health-and-diseases/anatomy-and-function-of-the-hypothalamus

Quote

The hypothalamus is involved in different daily activities like eating or drinking, in the control of the body's temperature and energy maintenance, and in the process of memorizing and in stress control. It also modulates the endocrine system through its connections with the pituitary gland.

...and more interesting functions listed later in the entry

I ask about post-partum hemorrhage for a couple of reasons. I gather that it's more common after pre-eclampsia, which can put you at lifelong risk of BP issues, and you suspect BP issues. Also, PPH can cause Sheehan Syndrome, which totally messes up your endocrine system, and it can come on suddenly from an injury to the pituitary gland (more easily recognized), or your pituitary can basically stop working slowly. Either way, it can show up as problems with your hypothalamus, thyroid, etc. (called panhypopituitarism when a bunch of glands are thrown off by a medical condition). But the low or lack of female hormones is almost universally present. Low BP during pregnancy/birth can also cause Sheehan Syndrome.

https://www.sciencedirect.com/topics/veterinary-science-and-veterinary-medicine/sheehans-syndrome

I would assume other panhypopituitarisms would have symptoms similar to Sheehan Syndrome, but without a history of PPH or low BP during pregnancy and childbirth. 

 

[kbutton]

17 hours ago, Kassia said:

I have a long history of receiving terrible, incorrect,  and sometimes dangerously incompetent medical care and am wary of seeing any doctors because it almost always seems like a waste of time and money.  It's ridiculous that doctors can charge for giving bad - or even dangerous - medical advice.  

 

5 hours ago, Kassia said:

I have no good doctors, which is part of the reason why I am feeling so hopeless and depressed about this.  I've just had awful experiences with doctors and don't want to go through that anymore.  Especially when it's so expensive to only be misdiagnosed and/or given bad medical advice.  My PCP is awful - I am disgusted with her and won't go back to her again.  DH's PCP (in our same group) seems better so maybe I could start with him but don't know if it would be awkward since the doctors practice in the same small group.  

This all resonates with me because I am somewhat the same boat. In my case, I have good specialists (women's health NP, allergist, OBGYN), so I have some recourse. I am trying my fourth PCP in May--this time I have a really good recommendation. 

That said, if you have a serious endocrine issue or even just an autoimmune issue, it's not unusual to be misdiagnosed or have to go through several doctors to find the right one.

I am sorry it's so hard. I've told DH that I would rather die a decade earlier than be treated in a patronizing way while being vulnerable in a doctor's office. It's traumatic.

My allergist wants to run a ton of tests. I postponed due to Covid but will start up after I am fully vaccinated for Covid. It's clear that I have allergic-ish condition that is not allergies. This is his bread and butter, and he really wants to have answers. I am not looking forward to all of the tests, but I wanted answers, and this is how they come along. I think you will have to get past the $$$ and ask, ask, ask, for good doctor references--ask people why they like theirs, etc. My optometrist is where my current recommendation came from, and she was very specific about why she likes this doctor, and those are qualities I appreciate. 

[Tap]

When you look for a new PCP, maybe look for an OD instead of an MD. Thier training is a bit different and maybe the different focus will help. For my dd, the best doctor we have found turned out to be a Naturopath with a pain clinic. Her subspecialty is POTS/Mast Cell Activation which is dd's other diagnosis. She took a year to get an appointment with but she has changed dd's life. Like Kbutton said, keep trying with new doctors until you figure it out. DD22 has over 20 specialists she saw in 5 years. Ironically what helps dd the most is a few specific vitamins, electrolytes, yoga, moderate exercise, sleep medication, allergy pills and a very mild pain med.  So, 3 mild meds and vitamins changed dd's life. At 18yo she had a period of time that she was so sick, she was only able to sit upright for 3 hours a day, otherwise she was laying flat in bed. Her doctor wanted her to apply for disability and we were talking about wheel chairs and service dogs. 

4 years later, she works 32 hours on her feet, can run 2 miles or hike for 4 hours. She volunteers at a wetland. She is healthy and very happy. The main med for her energy difference....electrolytes and water. She never drinks water without electrolytes. It really can be the strangest things that makes someone feel better. It wasn't tests that let to dd's treatment plan, it was the experience of the doctor and trials of supplements.

Edited April 11, 2021 by Tap

[BeachGal]

15 hours ago, Kassia said:

Thank you so much, Tap.  I'll try and answer your questions.

I feel fine when prepping the food.  I start feeling fuzzy when eating the food and then really bad when I'm done.  It's mostly a crushing feeling of fatigue and my face feels weird - almost tingly - and my eyes get very heavy.  My brain feels off, too.  I also feel physically weaker but it's mostly the feelings in my head - the fatigue and the weird feelings.  I can barely keep my eyes open sometimes.  

I do struggle with disordered eating but that's been my whole life and this has been in the past few years and seems to have gotten even worse recently.  I can't say for sure when it started.  I did have two colectomies in 6/18 and 6/19.  I don't think it has anything to do with my disordered eating issues but maybe from the colectomies?  I don't know.  I've also been diagnosed with hypothalamus dysfunction (I can't remember if I posted that earlier).  

I don't drink with meals but drink enormous amounts all day.  I saw a kidney doctor last year due to the low sodium (she was a total quack, though) and she told me I need to cut down my fluid consumption (haven't done) and to supplement with sodium tablets (I do this).  I'm always thirsty and, for some reason, the drinking seems to make my head feel clearer so I always have something to drink when I get that awful feeling. 

I eat the exact same foods at the exact same times most days (this probably has more to do with my disordered eating because I'm afraid to go off my plan and those foods feel safer to me).  I eat different amounts of those foods but I try to stick with those foods.  Some days I'll just indulge in treats and go "off plan" - those are the days I need to pay attention to and see if I feel any different.

This has become debilitating  and I feel like such a burden to DH.  

 

Kassia, have you had any testing done to measure insulin or long-term blood glucose levels? Feeling thirsty is one of the first signs of an insulin/glucose problem.

If your state allows it, you can go online and order a fasting insulin ($25-48) and/or an A1C ($28-30) test yourself. I use WalkIn Labs. If you sign up to receive their emails, they will send coupons to get a discount. Often these are around 15% off.

Here is how you sign up for WalkIn Labs: 

• create an account (sign up to receive promo emails for discounts)
• order tests online
• pay online
• print out a sheet of paper showing you ordered and paid
• make an appointment (optional because some places allow you to arrive early and wait without an appointment)
• show up at testing center, hospital lab or lab, and get the blood draw (bring your sheet of paper showing you paid)
• wait for results to be posted online

https://www.walkinlab.com/products/view/hemoglobin-hb-a1c-blood-test

https://www.walkinlab.com/products/view/insulin-fasting-blood-test

If I were you, I would try to test both of those.

I am reading a fantastic book that could help you. Maybe see if your library has it. It's written by Benjamin Bikman and is called Why We Get Sick. He has YouTube videos as well and I think a website. In the US, many of our diseases are caused or exacerbated by high levels of insulin. This is Bikman's area of expertise. At the very end of the book, he provides general guidelines to follow to reduce insulin and help our bodies respond more efficiently to it. Basically, the goals are: 1) avoid foods that cause spikes in glucose, 2) find ways to move/exercise, 3) optimize sleep.

If you need a few vegan or vegetarian recipes, Jason Fung might have some online or on YouTube.

I test my blood sugars often and have for years. Not daily for years but I do choose weeks to months sometimes. Blood glucose is easy to test at home and allows me to see if I'm spiking. If you want to do this, a decent device might be this one, about $30 and comes with 100 test strips:

https://www.amazon.com/Care-Touch-Diabetes-Testing-Kit/dp/B076VSN7TR/ref=zg_bs_3777171_1/136-3306469-9189164?_encoding=UTF8&psc=1&refRID=VK70EVV2MPFX2RDC163P

You might have something else going on, possibly as a result of your surgeries. Our bodies adapt remarkably , though, so I don't think you should fret over that.

 

ETA: Don't concern yourself with buying a blood pressure monitor right now because primary high blood pressure is a result of too much insulin. Maybe you could try to find a drugstore that offers the free readings and just pop in now and then to get a reading.

Edited April 11, 2021 by BeachGal

[Kassia]

1 hour ago, kbutton said:

 

Did your low female hormones happen over time? Have you ever had post-partum hemorrhage? A quick google search says that hypothalamus might explain a LOT of your symptoms, including the eating problems. https://www.intechopen.com/books/hypothalamus-in-health-and-diseases/anatomy-and-function-of-the-hypothalamus

 

 

Thank you so much!  I don't know when the low female hormones started.  Back in the late 90s, my infertility doctor suspected hypothalamus disorder but I was never tested.  A few years later, I had a surprise pregnancy and dd was born.  My periods stopped 6 years ago when I was 47 and it was just assumed that I went into menopause.  But my gynecologist ran some tests recently and found that my LH and estrogen levels are both extremely low.  FSH too. She said it was a mystery and highly unusual so she ran them again and they were the same.  So now we don't know if my periods stopped due to menopause or they hypothalamus issue.  Thank you for the all the information and links.  Interesting about the eating - I am always hungry and have no "full" switch but I've always been that way - since I was an infant.  

I've never had a postpartum hemorrhage.  I did have a placental abruption when I was pregnant with my twins, but no hemorrhage.

 

 

1 hour ago, kbutton said:

 

This all resonates with me because I am somewhat the same boat. In my case, I have good specialists (women's health NP, allergist, OBGYN), so I have some recourse. I am trying my fourth PCP in May--this time I have a really good recommendation. 

That said, if you have a serious endocrine issue or even just an autoimmune issue, it's not unusual to be misdiagnosed or have to go through several doctors to find the right one.

I am sorry it's so hard. I've told DH that I would rather die a decade earlier than be treated in a patronizing way while being vulnerable in a doctor's office. It's traumatic.

My allergist wants to run a ton of tests. I postponed due to Covid but will start up after I am fully vaccinated for Covid. It's clear that I have allergic-ish condition that is not allergies. This is his bread and butter, and he really wants to have answers. I am not looking forward to all of the tests, but I wanted answers, and this is how they come along. I think you will have to get past the $$$ and ask, ask, ask, for good doctor references--ask people why they like theirs, etc. My optometrist is where my current recommendation came from, and she was very specific about why she likes this doctor, and those are qualities I appreciate. 

Thank you!  I'm glad you have good specialists and hope this fourth PCP works out for you (since you have a good recommendation, it sounds good!).  Good luck with your allergy tests, too - I hope you get some clear answers.  That's great that you have a doctor who is so thorough.  

 

 

 

1 hour ago, Tap said:

 At 18yo she had a period of time that she was so sick, she was only able to sit upright for 3 hours a day, otherwise she was laying flat in bed. Her doctor wanted her to apply for disability and we were talking about wheel chairs and service dogs. 

4 years later, she works 32 hours on her feet, can run 2 miles or hike for 4 hours. She volunteers at a wetland. She is healthy and very happy. The main med for her energy difference....electrolytes and water. She never drinks water without electrolytes. 

What an amazing transformation.  It must have been so hard seeing your dd live like that at such a young age.  What a relief that she's doing so well and you found what works for her.  ❤️

 

36 minutes ago, BeachGal said:

Kassia, have you had any testing done to measure insulin or long-term blood glucose levels? Feeling thirsty is one of the first signs of an insulin/glucose problem.

If your state allows it, you can go online and order a fasting insulin ($25-48) and/or an A1C ($28-30) test yourself. 

 

I just had my A1C done recently and it was normal.  I keep telling DH that I need a test for long-term blood glucose levels because I suspect mine fluctuate a lot throughout the day.  But I've always been incredibly thirsty (and hungry).  When I was growing up, I was tested for diabetes frequently because of my constant thirst.  

Thank you for the information and links.  I am tempted to get the glucose monitor because I think it could give me some valuable information.  My only issue is that having my glucose tested in the past (by nurses) has made me really queasy to the point where I've passed out.  I'm not like that with all medical stuff - I can have lab work done with no issues at all - but something about the squeezing the blood out gets to me.  Maybe it happens more when my blood sugar is already low - I don't know.  

 

 

And a big big THANK YOU to everyone who responded!  I appreciate your time and support so much! 

Edited April 11, 2021 by Kassia

[BeachGal]

You can have normal A1Cs, normal glucose but high insulin. This is my husband -- thin build and normal A1C but -- high insulin. Once we worked on getting his insulin in a better range, his high blood pressure went back to a healthy range. So, the fasting insulin might be worth checking out. People can have hyperinsulinemia for many years, even decades and that can cause a lot of problems. Just tossing that our as something to consider. Bikman does a great job explaining it.

Anyway, I hope you find something the helps you!

[Kassia]

12 minutes ago, BeachGal said:

You can have normal A1Cs, normal glucose but high insulin. This is my husband -- thin build and normal A1C but -- high insulin. Once we worked on getting his insulin in a better range, his high blood pressure went back to a healthy range. So, the fasting insulin might be worth checking out. People can have hyperinsulinemia for many years, even decades and that can cause a lot of problems. Just tossing that our as something to consider. Bikman does a great job explaining it.

Anyway, I hope you find something the helps you!

I agree that I need more thorough insulin tests to see what is happening.  High blood pressure isn't an issue for me - I frequently have low blood pressure.  Glad your DH is doing better!  🙂  

Thank you!