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Mon, Jul 8 3:26am · Possible Adrenal Issues in Diabetes/Endocrine System

@mrmie I have been seen at the Mayo Clinic in Rochester for very similar issues. I have all the same symptoms as you except for the blood sugar. I had similar problems with doctors blaming depression and lack of exercise for my fatigue but I finally got a referral to the Mayo Clinic and it has been life changing for me. They found that my vitamin D levels were externally low, I have subclinical hypothyroidism, and my cortisol levels were 5.8. Unfortunately, they weren’t able to diagnose me because my insurance didn’t want to cooperate but they gave me a letter to give to my regular doctor to have my vitamin D and cortisol levels rechecked. They came back low again (4.8) but my regular doctor is claiming that is within normal range. I’m going to try and get a referral to an endocrinologist anyway. The point is, in my week at Mayo, they managed to catch 3 health problems that all my other doctors (about 12 over the course of 3 years) missed and they were able to advise me on how to move foreword. I highly recommend going to Mayo if you can!

Wed, Jul 3 1:26pm · Cortisol level interpretation in Diabetes/Endocrine System

About three months ago I was seen at the Mayo Clinic in Rochester for extreme fatigue. They found that my cortisol was low, a 5.8 with a reference range of 7-20 (the blood was taken at 10am). I was told to follow up with my regular doctor in three months, which I just did, to have another cortisol test. My doctor said if it came back low again I would be referred to an endocrinologist. This time it came back a 4.8, even lower than last time. Blood was drawn at 8:30am. However, I just got a letter from my doctor saying my cortisol looks like it’s back within normal range, with the reference range listed at 4.8-20. Can someone maybe explain to me how the reference range changed? This isn’t me being sarcastic, I genuinely want to know how the reference range could change like that. I know cortisol levels vary throughout the day but I was told they are supposed to be highest that early in the morning or something like that. I’m too afraid to ask my doctor about it because I have gone through so many doctors now trying to figure out what is wrong and I don’t want my doctor to think I’m a hypochondriac or something so I figured I would ask here. Thank you in advance to anyone who can give me any info on this!

Sat, Jun 29 10:46pm · Undiagnosed and don’t know where to go next in Autoimmune Diseases

@hopeful33250 @jenniferhunter do either of you know if there is a genetic link with hyperparathyroidism? My grandmother on my fathers side had it so I was wondering if that could increase my risk. My calcium levels are fine though, can they still look ok with hyperparathyroidism? If so I’ll be sure to ask for the test.

Sat, Jun 29 7:48pm · Chronically ill without diagnosis and don’t know what to do next in Just Want to Talk

I appreciate the recommendation but I can only afford to see doctors in the Minnesota/Wisconsin area due to the fact that I am on state healthcare insurance. Honestly I think that has been a big part of what’ve is making getting a diagnosis so hard for me but unfortunately I can’t afford to pay out of pocket and can’t afford to get off state insurance so it’s what I Ann stuck with

Fri, Jun 28 4:03am · Undiagnosed and don’t know where to go next in Autoimmune Diseases

@redhead63 I have not had my vitamin b12 tested but I have had my vitamin D tested at the Mayo Clinic and it came back an 8. Can low B12 and low vitamin D over a prolonged period cause autonomic dysfunction?

Fri, Jun 28 3:58am · Undiagnosed and don’t know where to go next in Autoimmune Diseases

Hey everyone! just wanted to post an update. I did finally end up going to the Mayo clinic in Rochester after finally finding a doctor who would refer me so that my insurance would cover the visit. Unfortunately they were unable to be as extensive as they would have liked thanks to my insurance not wanting to work with them in a timely manner and me not being able to cover the costs myself. They were very nice there though! Did more testing in the two weeks I was there than most of my doctors have in two years and they even waived the fee on my last appointment to help me handle the cost!

I had a few labs come back abnormal for once which is probably a weird thing to be excited about but after years of doctors knowing I am sick (several times with physical symptoms they were actually able to see for themselves) but normal lab results so they couldn't figure it out, having abnormal lab results has me feeling hopeful for answers!

My vitamin D levels are low. They were an 8 when they tested, with an optimal range being between 20 and 50. They now have me taking 5000 ui of vitamin D for three months and at the end of that three months (which will be the end of this month!) I have to go in to my regular doctor to get those levels retested. If they come back abnormal again then I am supposed to get tested for Celiac disease. They already did the blood test for Celiac disease at mayo but that came back normal. The doctors at mayo told me about 10% of people with Celiac disease have a normal blood test and with all my symptoms, they weren't ready to rule it out until they see how my body absorbs these vitamin D supplements.

My cortisol levels also came back low. A 5 with a reference range of 7-25. I was told I should have been on the higher end of that reference range though because they ran the cortisol test first thing in the morning when my cortisol should have been at its highest. I am also getting my cortisol levels rechecked at the three month mark (the end of this month.) and if it comes back weird again, they will dig further into that.

They also tested my thyroid levels with a TSH test that came back high (4.6 with a ref range of 0.3 – 4.2) indicating I may have some kind of thyroid condition that they caught early. I was told they don't do any treatment however unless those levels come back at at least a 10 because otherwise the medication could hurt more than it would help. I am supposed to go get my thyroid levels retested at the 6 month mark (about 4 months from now) and again at the 12 month mark just to make sure my thyroid levels don't get worse.

A few other results came back a little off but the doctors didn't feel those results held any significance so I won't mention them here.

Additionally, my primary care doctor wanted me to get the sores in my mouth tested for herpes the next time I had an outbreak of 4 or more sores. Due to the circumstances in my life at the time I wasn't able to get that done for the first few outbreaks but I finally got it done. The test results were negative, so not herpes. If I do end up having Celiac Disease then I have been told it could be a symptom of it.

Unfortunately my regular doctor just retired so while dealing with all of this I also have to find a new doctor who will believe me, be helpful, and take my insurance. I have an appointment with what will hopefully be my new primary care doctor in a few days to establish care and get my levels retested.

Fri, Jun 28 3:54am · Chronically ill without diagnosis and don’t know what to do next in Just Want to Talk

My autoimmune markers all come back fine so they have never done further testing. As for mast cell activation syndrome, I believe I may have it but I have had a hard time getting a doctor to take that seriously. When I mentioned it to my primary care provider he said it’s very rare so it’s unlikely that I have it and when I went to see an allergist about it he said I just have idiopathic hives and dermatographia and that, because they can only do blood tests and not the back scratch test due to my dermatographia, he wouldn’t be able to test me for allergies as thouroughly as I would need. He told me to just keep taking my allergy meds and adjusting the dose until it helped.

Wed, Jun 5 6:17pm · Chronically ill without diagnosis and don’t know what to do next in Just Want to Talk

Hey everyone! just wanted to post an update. I did finally end up going to the Mayo clinic in Rochester after finally finding a doctor who would refer me so that my insurance would cover the visit. Unfortunately they were unable to be as extensive as they would have liked thanks to my insurance not wanting to work with them in a timely manner and me not being able to cover the costs myself. They were very nice there though! Did more testing in the two weeks I was there than most of my doctors have in two years and they even waived the fee on my last appointment to help me handle the cost!

I had a few labs come back abnormal for once which is probably a weird thing to be excited about but after years of doctors knowing I am sick (several times with physical symptoms they were actually able to see for themselves) but normal lab results so they couldn't figure it out, having abnormal lab results has me feeling hopeful for answers!

My vitamin D levels are low. They were an 8 when they tested, with an optimal range being between 20 and 50. They now have me taking 5000 ui of vitamin D for three months and at the end of that three months (which will be the end of this month!) I have to go in to my regular doctor to get those levels retested. If they come back abnormal again then I am supposed to get tested for Celiac disease. They already did the blood test for Celiac disease at mayo but that came back normal. The doctors at mayo told me about 10% of people with Celiac disease have a normal blood test and with all my symptoms, they weren't ready to rule it out until they see how my body absorbs these vitamin D supplements.

My cortisol levels also came back low. A 5 with a reference range of 7-25. I was told I should have been on the higher end of that reference range though because they ran the cortisol test first thing in the morning when my cortisol should have been at its highest. I am also getting my cortisol levels rechecked at the three month mark (the end of this month.) and if it comes back weird again, they will dig further into that.

They also tested my thyroid levels with a TSH test that came back high (4.6 with a ref range of 0.3 – 4.2) indicating I may have some kind of thyroid condition that they caught early. I was told they don't do any treatment however unless those levels come back at at least a 10 because otherwise the medication could hurt more than it would help. I am supposed to go get my thyroid levels retested at the 6 month mark (about 4 months from now) and again at the 12 month mark just to make sure my thyroid levels don't get worse.

A few other results came back a little off but the doctors didn't feel those results held any significance so I won't mention them here.

Additionally, my primary care doctor wanted me to get the sores in my mouth tested for herpes the next time I had an outbreak of 4 or more sores. Due to the circumstances in my life at the time I wasn't able to get that done for the first few outbreaks but I finally got it done. The test results were negative, so not herpes. If I do end up having Celiac Disease then I have been told it could be a symptom of it. For now we aren't sure and I won't know anymore until my appointment with my primary caregiver at the end of the month. I'll be sure to update this post as soon as I know more in hopes of helping anyone who is going through something similar!