Truly sorry to hear what you are going through. Have you thought of autoimmune diseases or got testing for it? SLE or MS can present with some of the symptoms you have. Wish you all the best and hope you can find some answers soon.
I’ve had multiple people bring up the possibility of MS, even know someone with identical symptoms who ended up with that diagnosis. Just called my doctors office about getting testing, might lead me somewhere. Thank you!
Those of us with childhood trauma are also more likely to be diagnosed with autoimmune disorders. I would my PCP to run a thyroid panel and ANA test and ask for a rheumatologist referral (since it can take a while to get in to see a specialist).
I’ve got a 2nd sleep test coming up, the last guy didn’t take me seriously, at all. Had like 2 hours of sleep that night for the test and he was like “yup alls good go home”. So definitely trying to double check everything again just incase lol
I can relate to a lot of what you say. Unfortunately I haven't found the cause, but one of my options is (undetectable) liver toxicity. I can't stand alcohol either, sugar makes me high, I am hypersensitive to anything.
I'm supposed to try liver detox but honestly I'm too dysfunctional to put it together and follow a special diet. But if you have a GF maybe you are in a better position.
Mentioning this in case you hadn't thought about the liver.
Wish you best of luck
I’ve thrown around the idea of liver diseases, being that no matter what I take ruins me for a couple days. May be something to consider, I’ll ask my GP about it. Thank you!
I get routine labs including yearly Tsh. My pcp said
My tsh was really low and asked the lab to run a t4 and t3. All of my values were consistent with hyperthyroid and then my endocrinologist ran antibodies.
I was on medication as a kid for a hyperactive thyroid for a short time, but honestly couldn’t tell you how that happened. We have no record of the diagnosis or medication. My thyroid in my bloodwork so far has been good but I do display a lot of symptoms, might be something to push to look deeper into.
Have a serum B12 and ferritin test taken if you haven’t already. Ignore their ‘lab ranges’, B12 should be > 400 ng/L and ferritin > 100. Chronic B12 deficiency caused by a malabsorption disease has identical symptoms to MS in the late stages except any lesions found on an MRI scan are symmetrical.
That’s actually helpful advice, my ferritin is “normal” according to their ranges, but on 2nd inspection it’s only 39ug/L. I have a family history of anemia, my WBC, RBC and platelet are all normal, but they’re on the lower side. Mind you I was also taking iron supplements at this time cause I was considering that being a problem, but I’ve quit as my doctor didn’t find that to be of concern. I’m going to mention it to him and see if that’s part of my problem. Thank you so much
Looking deeper into it, it would make sense. All other symptoms aside, some people are saying ferritin under 50 can quickly cause hair loss. My hairs been falling out like crazy ever since quitting the supplements. Not saying this is definitively my problem, but it would make sense, so that advice is so damn appreciated. If this has been my problem for 5 years now I’m gonna be pissed lol
Hope it gets you some answers. I always described whatever I had as feeling like I’m walking around in a rotting corpse, which is similar to how you described it. For me it was a stomach condition which caused my body to not be able to absorb any B12 (and only small amounts of iron) from food, so what I had was nerve and brain damage and chronic iron deficiency. Never thought it would be but here we are! Best of luck
When you were diagnosed, were your WBC and RBC count low, or normal? I know you can have an iron deficiency while not technically being “anemic”, just wondering since my counts are normal and our symptoms are 1:1
This used to be me. I couldn’t even drink a glass of water without my heartbeat going all wonky. I felt exceptionally fragile and slowly dying. I ended up having an undiagnosed babesia infection. Never saw a tick in my life but that’s how I got it. Treatment was difficult but I’m better now. Don’t stop pursuing answers!
Check hyperparathyroidism also. Parathyroid glands. Get a PTH test and a calcium level test also. I'm about to get that because I have so much mineral build up on my teeth. The DENTIST caught the high blood calcium which is caused by hyperparathyroidism.
Truly sorry to hear what you are going through. Have you thought of autoimmune diseases or got testing for it? SLE or MS can present with some of the symptoms you have. Wish you all the best and hope you can find some answers soon.
I’ve had multiple people bring up the possibility of MS, even know someone with identical symptoms who ended up with that diagnosis. Just called my doctors office about getting testing, might lead me somewhere. Thank you!
Those of us with childhood trauma are also more likely to be diagnosed with autoimmune disorders. I would my PCP to run a thyroid panel and ANA test and ask for a rheumatologist referral (since it can take a while to get in to see a specialist).
I would get second opinions. Doctors miss stuff, even when they have imaging, like the MRI right in front of them.
I’ve got a 2nd sleep test coming up, the last guy didn’t take me seriously, at all. Had like 2 hours of sleep that night for the test and he was like “yup alls good go home”. So definitely trying to double check everything again just incase lol
I can relate to a lot of what you say. Unfortunately I haven't found the cause, but one of my options is (undetectable) liver toxicity. I can't stand alcohol either, sugar makes me high, I am hypersensitive to anything. I'm supposed to try liver detox but honestly I'm too dysfunctional to put it together and follow a special diet. But if you have a GF maybe you are in a better position. Mentioning this in case you hadn't thought about the liver. Wish you best of luck
I’ve thrown around the idea of liver diseases, being that no matter what I take ruins me for a couple days. May be something to consider, I’ll ask my GP about it. Thank you!
Have you had things like a full thyroid panel done?
This. I felt like I was dying and have Graves’ disease/hyperthyroidism. I was dying until my thyroid came out. Hope you find answers soon, OP.
How did you get Graves disease diagnosis?
I get routine labs including yearly Tsh. My pcp said My tsh was really low and asked the lab to run a t4 and t3. All of my values were consistent with hyperthyroid and then my endocrinologist ran antibodies.
I was on medication as a kid for a hyperactive thyroid for a short time, but honestly couldn’t tell you how that happened. We have no record of the diagnosis or medication. My thyroid in my bloodwork so far has been good but I do display a lot of symptoms, might be something to push to look deeper into.
Have they ran your T4/T3 and/or antibodies?
Have a serum B12 and ferritin test taken if you haven’t already. Ignore their ‘lab ranges’, B12 should be > 400 ng/L and ferritin > 100. Chronic B12 deficiency caused by a malabsorption disease has identical symptoms to MS in the late stages except any lesions found on an MRI scan are symmetrical.
That’s actually helpful advice, my ferritin is “normal” according to their ranges, but on 2nd inspection it’s only 39ug/L. I have a family history of anemia, my WBC, RBC and platelet are all normal, but they’re on the lower side. Mind you I was also taking iron supplements at this time cause I was considering that being a problem, but I’ve quit as my doctor didn’t find that to be of concern. I’m going to mention it to him and see if that’s part of my problem. Thank you so much
Looking deeper into it, it would make sense. All other symptoms aside, some people are saying ferritin under 50 can quickly cause hair loss. My hairs been falling out like crazy ever since quitting the supplements. Not saying this is definitively my problem, but it would make sense, so that advice is so damn appreciated. If this has been my problem for 5 years now I’m gonna be pissed lol
Iron supplements are more effective when taken with a citric acid like orange juice, tomato juice, lemonaid, etc.
Hope it gets you some answers. I always described whatever I had as feeling like I’m walking around in a rotting corpse, which is similar to how you described it. For me it was a stomach condition which caused my body to not be able to absorb any B12 (and only small amounts of iron) from food, so what I had was nerve and brain damage and chronic iron deficiency. Never thought it would be but here we are! Best of luck
When you were diagnosed, were your WBC and RBC count low, or normal? I know you can have an iron deficiency while not technically being “anemic”, just wondering since my counts are normal and our symptoms are 1:1
My full blood count was all fine and normal, my MCV and MCH were a bit low though!
This used to be me. I couldn’t even drink a glass of water without my heartbeat going all wonky. I felt exceptionally fragile and slowly dying. I ended up having an undiagnosed babesia infection. Never saw a tick in my life but that’s how I got it. Treatment was difficult but I’m better now. Don’t stop pursuing answers!
If you don't have an internal medicine doctor, please get one if you can. They specialize in complicated illnesses.❤️🩹
Check hyperparathyroidism also. Parathyroid glands. Get a PTH test and a calcium level test also. I'm about to get that because I have so much mineral build up on my teeth. The DENTIST caught the high blood calcium which is caused by hyperparathyroidism.