1. < Autoimmune Diseases

Cortisol deficiency, but with weight gain

Posted by m @mh10, Jul 10, 2023

Has anybody experienced unexplained weight gain when your cortisol levels are low? I recently had a two day stem test, which resulted with low cortisol levels that my adrenal glands are not producing correctly.. but I have unexplained weight gain. Usually when your cortisol levels are low, you lose weight.
I went back to all my test results from 2016 when I started to gain weight and feel drained and just sick. They gave me so many tests, and they claimed everything was normal. I did not have MyChart at the time, so I never could see the test results until recently when I scrolled all the way back to that time and seen my cortisol levels were extremely low. I don’t understand why nothing was ever done.

Last year, I started getting the same exhaustion and fatigue and weight gain for no reason and then I got Covid at the beginning of this year and then everything became severe. 24/7. That’s when I went back to the endocrinologist and thought it was my thyroid because I do have Graves’ disease, which is supposed to be in remission right now, but they said everything looked good in the normal levels, except my cortisol levels were low for that time of day and that’s when I took the stem test.
When I ask why I’m gaining weight, nobody knows. They want me to take steroids for the low cortisol levels, but I know I’m going to blow up once I start taking them.
I am also having muscle and joint pain and weakness in my whole body which I think might be related, but I don’t know… I just know I’m getting very frustrated.
Does anybody know or have any autoimmune disease that causes low cortisol levels, but unexplained weight gain instead of weight loss with fatigue and muscle and joint pain?
I’m getting tired of going from doctor to doctor when all they do is take blood tests and come into the room for less than five minutes to say blood tests are fine, nothings wrong. Ughhhhh I need answers!!!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 7 10:00pm
In reply to @ladyaceintx1 "@tom1970 Does your insurance require a referral to see a specialist? If so, either your PCP..." + (show)
@ladyaceintx1

@tom1970
Does your insurance require a referral to see a specialist? If so, either your PCP or Endo could refer you. Your dose of 15mg total for Secondary adrenal insufficiency is very low and most Endocrinologists recommend taking your largest dose first in the morning because doing so mimics your body's natural circadian rhythm and gives you a cortisol boost to start your day. Also, as Secondary AI , we learn to space out our Hydrocortisone so that a small amount is always in our system. Most Endocrinologists understand this approach and allow their patients to experiment with both the frequency and the dose to fit your needs. I recommend discussing this approach with your Endo on your next visit. There are different types of liver disease, so my initial comment was meant "generally" not knowing what type you may have. I'm going to include a little bit more information but you need more diagnostic testing which is why a Hepatologist is needed.
Fatty liver disease, also known as hepatic steatosis, is a condition characterized by the accumulation of excess fat in liver cells. It can be broadly classified into two categories: alcoholic fatty liver disease (AFLD) and non-alcoholic fatty liver disease (NAFLD). The latter is more common and is often associated with obesity, type 2 diabetes, and metabolic syndrome.

### Types of Fatty Liver Disease
1. **Alcoholic Fatty Liver Disease (AFLD)**: Caused by excessive alcohol consumption.
2. **Non-Alcoholic Fatty Liver Disease (NAFLD)**: Not related to alcohol consumption. It can progress to non-alcoholic steatohepatitis (NASH), which is more severe and can lead to liver fibrosis, cirrhosis, or liver cancer.

### Diagnostic Tests
Several tests can be used to diagnose fatty liver disease:

1. **Blood Tests**:
- Liver function tests (LFTs) to measure levels of liver enzymes (ALT, AST) and assess liver function.
- Tests for viral hepatitis, iron levels, and other metabolic disorders.

2. **Imaging Tests**:
- **Ultrasound**: Most common initial imaging test used to detect fat in the liver.
- **CT Scan or MRI**: Can provide more detailed images of the liver.
- **Elastography**: Measures liver stiffness, which can indicate fibrosis.

3. **Liver Biopsy**: A definitive method to assess the extent of liver damage and inflammation. It is usually performed if there is uncertainty about the diagnosis or if NASH is suspected.
Early detection is key and now that you have a partial diagnosis, it's extremely important that more tests be ordered to determine the extent of your liver disease and then to formulate a treatment plan. Another thought, is to investigate seeing a team of specialists at a Mayo Clinic. They are the best qualified to put all the puzzle pieces together and give you the answers you seek. Each clinic offers their own clinical specialties, so the closest one to where you live may not specialize in the medical conditions you have. You can look this up online or on this site. I'm looking into this myself and there are no Mayo Clinics in Texas so I would have to travel to either Arizona, Florida or Minnesota. Try to keep your spirits up and remember that we can only do our best. (with plenty of rest, lol)

Jump to this post

@tom1970 @ladyaceintx1 Tom, your situation sounds just awful and no medical providers to help you! And @ladyaceintx1 , you have a new diagnosis and want more and better information. Have either of you looked into Mayo Clinic’s Care Network? It’s a group of hospitals across the county who meet the high standards that Mayo sets. In return, they have access to all that Mayo has to offer. Here is the link:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
And if you are planning or hoping for an appointment at Mayo Clinic, here is the url used by those on Mayo Clinic Connect: http://mayocl.in/1mtmR63
I wish both of you good luck. If traveling is not an option, you should check into a university/ teaching or major medical center near you. And you won’t need a referral, you can just call the main number and explain the situation. That is what my husband did. I was basically non-responsive in our local ER, but my husband called and the university hospital gave me an appointment with the neuro-immunologist. But first, the university told the local doctors to start heparin so I could wake up. I’m not cured, butI’m doing well!
What do you think could happen if you make some phone calls?

REPLY
2 replies
tom1970 | @tom1970 | Aug 8 11:10am
In reply to @becsbuddy "@tom1970 @ladyaceintx1 Tom, your situation sounds just awful and no medical providers to help you! And..." + (show)
@becsbuddy

@tom1970 @ladyaceintx1 Tom, your situation sounds just awful and no medical providers to help you! And @ladyaceintx1 , you have a new diagnosis and want more and better information. Have either of you looked into Mayo Clinic’s Care Network? It’s a group of hospitals across the county who meet the high standards that Mayo sets. In return, they have access to all that Mayo has to offer. Here is the link:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
And if you are planning or hoping for an appointment at Mayo Clinic, here is the url used by those on Mayo Clinic Connect: http://mayocl.in/1mtmR63
I wish both of you good luck. If traveling is not an option, you should check into a university/ teaching or major medical center near you. And you won’t need a referral, you can just call the main number and explain the situation. That is what my husband did. I was basically non-responsive in our local ER, but my husband called and the university hospital gave me an appointment with the neuro-immunologist. But first, the university told the local doctors to start heparin so I could wake up. I’m not cured, butI’m doing well!
What do you think could happen if you make some phone calls?

Jump to this post

Thank you very much for your suggestions. I'm kind of stuck between a rock and a hard place. I live too far away from any medical universities. My wife and I have discussed going to a Mayo Clinic but again the distance and all concerns of $$. I shouldn't say this but all the Drs. I've seen, they seem to shake their head, apologize and send me on my way so they don't have to deal with me. The pain throughout my body 24/7 is difficult and it get's much worse when the weather turns cold. I fear going in to this coming winter. Thank you again and Best Wishes to you with your health and it's great to read you are "doing well!". Kind regards, Tom

REPLY
1 reply
tom1970 | @tom1970 | Aug 8 11:19am
In reply to @ladyaceintx1 "@tom1970 Does your insurance require a referral to see a specialist? If so, either your PCP..." + (show)
@ladyaceintx1

@tom1970
Does your insurance require a referral to see a specialist? If so, either your PCP or Endo could refer you. Your dose of 15mg total for Secondary adrenal insufficiency is very low and most Endocrinologists recommend taking your largest dose first in the morning because doing so mimics your body's natural circadian rhythm and gives you a cortisol boost to start your day. Also, as Secondary AI , we learn to space out our Hydrocortisone so that a small amount is always in our system. Most Endocrinologists understand this approach and allow their patients to experiment with both the frequency and the dose to fit your needs. I recommend discussing this approach with your Endo on your next visit. There are different types of liver disease, so my initial comment was meant "generally" not knowing what type you may have. I'm going to include a little bit more information but you need more diagnostic testing which is why a Hepatologist is needed.
Fatty liver disease, also known as hepatic steatosis, is a condition characterized by the accumulation of excess fat in liver cells. It can be broadly classified into two categories: alcoholic fatty liver disease (AFLD) and non-alcoholic fatty liver disease (NAFLD). The latter is more common and is often associated with obesity, type 2 diabetes, and metabolic syndrome.

### Types of Fatty Liver Disease
1. **Alcoholic Fatty Liver Disease (AFLD)**: Caused by excessive alcohol consumption.
2. **Non-Alcoholic Fatty Liver Disease (NAFLD)**: Not related to alcohol consumption. It can progress to non-alcoholic steatohepatitis (NASH), which is more severe and can lead to liver fibrosis, cirrhosis, or liver cancer.

### Diagnostic Tests
Several tests can be used to diagnose fatty liver disease:

1. **Blood Tests**:
- Liver function tests (LFTs) to measure levels of liver enzymes (ALT, AST) and assess liver function.
- Tests for viral hepatitis, iron levels, and other metabolic disorders.

2. **Imaging Tests**:
- **Ultrasound**: Most common initial imaging test used to detect fat in the liver.
- **CT Scan or MRI**: Can provide more detailed images of the liver.
- **Elastography**: Measures liver stiffness, which can indicate fibrosis.

3. **Liver Biopsy**: A definitive method to assess the extent of liver damage and inflammation. It is usually performed if there is uncertainty about the diagnosis or if NASH is suspected.
Early detection is key and now that you have a partial diagnosis, it's extremely important that more tests be ordered to determine the extent of your liver disease and then to formulate a treatment plan. Another thought, is to investigate seeing a team of specialists at a Mayo Clinic. They are the best qualified to put all the puzzle pieces together and give you the answers you seek. Each clinic offers their own clinical specialties, so the closest one to where you live may not specialize in the medical conditions you have. You can look this up online or on this site. I'm looking into this myself and there are no Mayo Clinics in Texas so I would have to travel to either Arizona, Florida or Minnesota. Try to keep your spirits up and remember that we can only do our best. (with plenty of rest, lol)

Jump to this post

I've made a copy of your info. Thank you Very much.

REPLY
ladyaceintx1 | @ladyaceintx1 | Aug 8 11:31am
In reply to @becsbuddy "@tom1970 @ladyaceintx1 Tom, your situation sounds just awful and no medical providers to help you! And..." + (show)
@becsbuddy

@tom1970 @ladyaceintx1 Tom, your situation sounds just awful and no medical providers to help you! And @ladyaceintx1 , you have a new diagnosis and want more and better information. Have either of you looked into Mayo Clinic’s Care Network? It’s a group of hospitals across the county who meet the high standards that Mayo sets. In return, they have access to all that Mayo has to offer. Here is the link:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
And if you are planning or hoping for an appointment at Mayo Clinic, here is the url used by those on Mayo Clinic Connect: http://mayocl.in/1mtmR63
I wish both of you good luck. If traveling is not an option, you should check into a university/ teaching or major medical center near you. And you won’t need a referral, you can just call the main number and explain the situation. That is what my husband did. I was basically non-responsive in our local ER, but my husband called and the university hospital gave me an appointment with the neuro-immunologist. But first, the university told the local doctors to start heparin so I could wake up. I’m not cured, butI’m doing well!
What do you think could happen if you make some phone calls?

Jump to this post

Thank you for the suggestion and I am looking into it. Traveling is difficult this time of year as I don't have family available to help me make a trip due to their work schedules. Hopefully, by next year I could plan a visit if needed. I am already scheduled here in Houston to see an Advanced Endocrinologist in September for a second opinion on treatment options. I'll update after that visit. Thanks again and take care.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 8 11:39am
In reply to @tom1970 "Thank you very much for your suggestions. I'm kind of stuck between a rock and a..." + (show)
@tom1970

Thank you very much for your suggestions. I'm kind of stuck between a rock and a hard place. I live too far away from any medical universities. My wife and I have discussed going to a Mayo Clinic but again the distance and all concerns of $$. I shouldn't say this but all the Drs. I've seen, they seem to shake their head, apologize and send me on my way so they don't have to deal with me. The pain throughout my body 24/7 is difficult and it get's much worse when the weather turns cold. I fear going in to this coming winter. Thank you again and Best Wishes to you with your health and it's great to read you are "doing well!". Kind regards, Tom

Jump to this post

@tom1970 Do you mind if I ask where you live? Certainly, one of Mayo’s Network Care Partners is a reasonable distance for you to go. I just hate to see you go untreated when there are good doctors and hospitals out there. Here is another avenue to try: https://myhelpnavigator.auntbertha.com/
Another source to try is social workers at your hospital. They should know of all resources in your area. So, who could you call today?

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 8 11:48am
In reply to @ladyaceintx1 "Thank you for the suggestion and I am looking into it. Traveling is difficult this time..." + (show)
@ladyaceintx1

Thank you for the suggestion and I am looking into it. Traveling is difficult this time of year as I don't have family available to help me make a trip due to their work schedules. Hopefully, by next year I could plan a visit if needed. I am already scheduled here in Houston to see an Advanced Endocrinologist in September for a second opinion on treatment options. I'll update after that visit. Thanks again and take care.

Jump to this post

@ladyaceintx1 . I’m so glad that you have an appointment! And September is only 1 month away! That gives you time to sort through your notes from all your visits. You may also find out if this doctor’s office has a fax machine so you could send the most pertinent information ahead of time. What is the #1 question that you would like to ask at your visit?

REPLY
1 reply
ladyaceintx1 | @ladyaceintx1 | Aug 8 1:57pm
In reply to @becsbuddy "@ladyaceintx1 . I’m so glad that you have an appointment! And September is only 1 month..." + (show)
@becsbuddy

@ladyaceintx1 . I’m so glad that you have an appointment! And September is only 1 month away! That gives you time to sort through your notes from all your visits. You may also find out if this doctor’s office has a fax machine so you could send the most pertinent information ahead of time. What is the #1 question that you would like to ask at your visit?

Jump to this post

Yes, the records will be sent ahead of the appointment. My SAI is complicated by Chronic Pancreatitis and other hormonal issues so one question is has enough adrenal testing been done to determine my current condition of SAI. Are there any other treatment options, and discuss the interactions between my medical conditions and recent lab results.

REPLY
slkanowitz | @slkanowitz | Aug 9 3:42am

One possible explanation for the weight gain is that low cortisol levels make one so fatigued that your activity level drops dramatically and you aren’t expending the calories you consume. The muscle weakness and pain is part of the adrenal insufficiency. This must be treated with cortisol (steroid) replacement to feel better and prevent serious complications. The doses are adjusted to simply replace what your adrenal glands are not producing so the typical steroid side effects are not an issue. Please don’t refuse treatment based on fear of side effects. You should feel like a new person once on adequate treatment. Your weight may drop once more physically active. No endocrinologist should be dismissing this and not offering you cortisol and mineralcorticoid, if needed, treatment. Adrenal insufficiency can be life threatening! It must be taken seriously and treated adequately. I hope you feel better soon!

REPLY
seestar | @seestar | Aug 14 9:11pm

Hi m @mh10,
I have looking forward to your updates.
I hope the new treatment is working for you.
Hope to hear from you soon.
Best regards

REPLY
ll03fletcher | @ll03fletcher | Sep 15 2:34pm
In reply to @flmommy2 "Did you ever get this figured out? I’m in the exact same situation. Low cortisol, weight..." + (show)
@flmommy2

Did you ever get this figured out? I’m in the exact same situation. Low cortisol, weight gain and no answers. I’m so miserable and nobody is doing anything to help

Jump to this post

Same thing here as well.. have you found any answers or resolutions to the issue?

REPLY
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