Hummingbird Posted April 4, 2009 Report Share Posted April 4, 2009 One of my doctors says that my symptoms of POTS are actually adrenal fatigue/insufficiency. My symptoms are VERY similiar (low blood pressure, tachycardia, fatigue, stress intolerance, hypoglycemia, etc). Has anyone been told this? She has prescribed VERY LOW dose hydrocortisone to help with my low cortisol levels. She has also prescribed Florinef, which I haven't started yet. Just wanted to hear some feedback/opinions. Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 5, 2009 Report Share Posted April 5, 2009 One of my doctors says that my symptoms of POTS are actually adrenal fatigue/insufficiency. My symptoms are VERY similiar (low blood pressure, tachycardia, fatigue, stress intolerance, hypoglycemia, etc). Has anyone been told this? She has prescribed VERY LOW dose hydrocortisone to help with my low cortisol levels. She has also prescribed Florinef, which I haven't started yet. Just wanted to hear some feedback/opinions.My endocrinologist will not go as far as your doctor in saying that the adrenal insufficiency is contributory to POTS. He says there are no studies and cannot say which came first, adrenal insufficiency or the POTS causing it?In any event, via an insulin tolerance test, he could see my adrenals did not respond as vigorously as normal, and I am taking a low dose of Cortef daily, specifically, 5 mg with breakfast, 1.25mg (1/4 pill) with lunch and 1/4 pill at 4 PM.I will be consulting with him again as I think I need more.Your doctor may be right, but my doctor said they do not know for sure which came first, the adrenal insufficiency or the POTS. To tell you the truth, I'm suspicious of your doctor claiming she knows. Can she point to a study and teach other doctors about this? Is she a holistic, or alternative doctor, by any chance?I do not believe we all fit in the same box, nor have the same causative factors contributing to our problem. Has she tested you for anything she is saying? Be wary of doctors or anyone claiming that they "know" what the cause of everyones' POTS is. That's my opinion. Quote Link to comment Share on other sites More sharing options...
Tessa Posted April 5, 2009 Report Share Posted April 5, 2009 Hi, HummingbirdI would say that symptoms of POTS can be similar to many other diseases, including adrenal fatigue and/or adrenal insufficiency. The thing is that POTS can be caused by an adrenal disease, and when this is confirmed, than you have the clue to start looking for a treatment. My story is a very long story... (as many of us)...Then I was told I had POTS. After this, it was confirmed that I have Adrenal Insufficiency (Hypoaldosteronism, possible Hypopit).Furthermore, I have a Casein & gluten insensitivity, Anaphylactic reaction to local aenesthetic and nitroglicerine, melon & pineapple allergy...Now I am on HC, Florinef and supplements: Potassium, Calcium, vitamin complex + extra saltMy general health is better than before, though not perfect. What I recommend is BEFORE starting on a replacement therapy, to carry out all the tests in order to determine the kind of adrenal insuffuciency that you have.Please, take a look to the following pages (worth reading): Adrenal FAQ Interprete Labs Aldosterone, Florinef and salt Adrenals: testing and treatment And if you have been confirmed to have an adrenal insufficiency or fatigue, I would like to recommend you the following forum, too: Hormone Support Group Hope this helps.Love,Tessa Quote Link to comment Share on other sites More sharing options...
futurehope Posted April 5, 2009 Report Share Posted April 5, 2009 Tessa,I checked out the hormone support group forum, and it stressed me out (unfortunately). The moderator there spent hours and hours and hours putting together a "what you should do" list in order to get well. It saddens and depresses me that an already sick patient has to work that hard to understand what is going on, because the doctors have no clue.We are not well to begin with, and the thought of having files of info to take along to a doctors' visit so he could have a clue what going on, is too much to take.I'm venting here. Why do sick patients have to spend hours and hours self-diagnosing before a doctor will take them seriously?I will be visiting my endocrinologist with about 5 questions I have, but I will not be putting a file together trying to get him to understand my condition. I may need to go to another endocrinologist, but, the truth be told, most of them make most of their money off of repeat visits from diabetics. Us difficult cases, well, what's in it for them? Unless they have natural curiosity, we are not the money makers, since they do not have a magic formula for how to treat us.Sorry. I was just venting. I do appreciate your posting. It just overwhelmed my already tired mind. I'm glad you have found the help you need. I'll be in a better place mentally when I find the same. Quote Link to comment Share on other sites More sharing options...
yogini Posted April 5, 2009 Report Share Posted April 5, 2009 They are separate conditions with some overlapping symptoms. Did you have tests to determine the adrenal issue? I know that there are some tests where they inject you with hormones and then draw blood to see how your adrenals react. POTS is determined by the TTT. I think the adrenal issue can be more easily corrected with meds than POTS. Quote Link to comment Share on other sites More sharing options...
Hummingbird Posted April 17, 2009 Author Report Share Posted April 17, 2009 My endocrinologist will not go as far as your doctor in saying that the adrenal insufficiency is contributory to POTS. He says there are no studies and cannot say which came first, adrenal insufficiency or the POTS causing it?In any event, via an insulin tolerance test, he could see my adrenals did not respond as vigorously as normal, and I am taking a low dose of Cortef daily, specifically, 5 mg with breakfast, 1.25mg (1/4 pill) with lunch and 1/4 pill at 4 PM.I will be consulting with him again as I think I need more.Your doctor may be right, but my doctor said they do not know for sure which came first, the adrenal insufficiency or the POTS. To tell you the truth, I'm suspicious of your doctor claiming she knows. Can she point to a study and teach other doctors about this? Is she a holistic, or alternative doctor, by any chance?I do not believe we all fit in the same box, nor have the same causative factors contributing to our problem. Has she tested you for anything she is saying? Be wary of doctors or anyone claiming that they "know" what the cause of everyones' POTS is. That's my opinion.Futurehope,Sorry, I should have been more specific. She thinks MY symptoms of POTS are actually adrenal insufficiency. However, she is not a specialist. She is my primary care doctor who was also an ER physician for 12 years. And, yes, she is now an alternative MD. How are you feeling on the Cortef? How long have you been taking it? I was prescribed Cortef 5mg/day to start. I also take Florinef which has been a WONDER DRUG for me. My heart rate was 120-140 with a BP of 80/50. On just half a tab of Florinef, my heart rate is down to 80-90 and BP is 90/60 most days. I feel like I have more stamina and energy. (Amazing what blood pressure does for ya!) I agree. We certainly don't all fit in the same box. I find this syndrome as frustrating as I do fascinating! Anyways, thanks for your reply! Quote Link to comment Share on other sites More sharing options...
Hummingbird Posted April 17, 2009 Author Report Share Posted April 17, 2009 Hi, HummingbirdI would say that symptoms of POTS can be similar to many other diseases, including adrenal fatigue and/or adrenal insufficiency. The thing is that POTS can be caused by an adrenal disease, and when this is confirmed, than you have the clue to start looking for a treatment. My story is a very long story... (as many of us)...Then I was told I had POTS. After this, it was confirmed that I have Adrenal Insufficiency (Hypoaldosteronism, possible Hypopit).Furthermore, I have a Casein & gluten insensitivity, Anaphylactic reaction to local aenesthetic and nitroglicerine, melon & pineapple allergy...Now I am on HC, Florinef and supplements: Potassium, Calcium, vitamin complex + extra saltMy general health is better than before, though not perfect. What I recommend is BEFORE starting on a replacement therapy, to carry out all the tests in order to determine the kind of adrenal insuffuciency that you have.Please, take a look to the following pages (worth reading): Adrenal FAQ Interprete Labs Aldosterone, Florinef and salt Adrenals: testing and treatment And if you have been confirmed to have an adrenal insufficiency or fatigue, I would like to recommend you the following forum, too: Hormone Support Group Hope this helps.Love,TessaTessa,THANK YOU for the links! (GREAT info!) I do have confirmed adrenal fatigue. I recently started Florinef and Cortef, along with a handful of supplements. Thus far, the Florinef has been a WONDER DRUG for me. I also have gluten sensitivity. Did you have ALCAT bloodwork done? (ALCAT tests for food/chemical sensitivities) Thanks again for taking the time to reply. It is much appreciated! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 17, 2009 Report Share Posted April 17, 2009 As far as I am aware some doctors do not recognise adrenal fatigue as a recognised disorder. That being said, POTS has measurable abnormalities in blood flow regulation and sympathetic overactivity that are probably beyond the scope of the symptoms described by adrenal fatigue. Quote Link to comment Share on other sites More sharing options...
Tessa Posted April 19, 2009 Report Share Posted April 19, 2009 You are all welcome and I am glad to have been of any help.Adrenal insufficiency and hypopituitarism for sure is the real cause of my POTS and although it is not easy to get to the right treatment (i have to adjust the dosis depending on my daily activities), POTS is MUCH better now than it was before. At least, now I can stand up, keep standing for a long while, walk, go out shopping, etc. Have not fainted and my near syncope symptoms are not often anymore.My heart rate is still very high (even more when standing). Still cannot exercise, dance, travel too far, etc.... But that?s probably because my treatment is not enough for my needs... But I have the faith that I will feel better...Hope you can get the clue, the treatment and the help needed.Love,Tessa Quote Link to comment Share on other sites More sharing options...
flop Posted April 19, 2009 Report Share Posted April 19, 2009 Most doctors do not understand or accept adrenal fatigue/insufficiency as a medical problem as it is a relatively new concept and the traditional test for adrenal failure (Addison's Disease) are "normal" when adrenal fatigue/insufficiency is present.I was diagnosed with adrenal fatigue by an alternative health practitioner based on serial salivary hormone measurements. Two separate 8am blood cortisol levels taken years appart would fit with the stages of adrenal problems that I have gone through.My practitioners explanation is that I got POTS following a viral infection, standing up was putting a lot of stress on my body so my adrenals would churn out extra adrenaline and cortisol to try to keep my BP up. After years of being in over-drive my adrenals get to a state where they can no longer produce the extra stress hormones needed and then to a state where they are only just managing to make enough cortisol for my basic needs. At that point my POTS got much worse.I am treating my adrenal fatigue with supplements and by attempting to minimize the stress on my body - sleeping well (and on a regular schedule), eating well (to avoid hypoglycaemia), gentle exercise (I had to stop exercise initially to let my body rest). I was lucky that I wasn't so bad that I had to take cortisol medication. Taking steroids gives the body exactly the hormones it is short of but steroids also cause adrenal suppression so you can't fix the underlying problem (if it is fixable) whilst on steroids.Flop Quote Link to comment Share on other sites More sharing options...
Hummingbird Posted April 20, 2009 Author Report Share Posted April 20, 2009 Tessa and Flop,It is so refreshing to find others that have the same challenges! I was diagnosed with adrenal fatigue based on saliva cortisol results. My cortisol was within normal range in the AM, and very low at noon, evening and bedtime. I had ZERO energy and was barely functioning at work. My doctor prescribed Florinef for low BP/tachycardia and hydrocortisone, along with vitamin supplements and vitamin infusions. I have not taken the hydrocortisone. I wanted to try Florinef first, because some say that makes enough difference. I like to try a more natural approach if possible, but found salt/water and supplements alone weren't working. The Florinef has been a LIFESAVER for me. My BP is up to 90/60 and HR down to 80-90. Anyways, I would be VERY interested to know what supplements you are both taking to help the adrenals. Along with Florinef, I continue the salt/water, and take vitamin C, pantethine (B-5), B-12 injections... and the list goes on and on. What were/are your symptoms of adrenal fatigue? Thanks for your posts! Quote Link to comment Share on other sites More sharing options...
Tessa Posted April 20, 2009 Report Share Posted April 20, 2009 Hi Hummingbird and of course, all of you who are reading this post I have adrenal insufficiency (not adrenal fatigue) and I do not have Addison disease. You can have adrenal insufficiency but not Addison disease. Aldosterone was nearly undetectable and cortisol was below normal range (first time in the morning). Furthermore, my ACTH stimulation test was failed - therefore confirming hypopituitarism... I Have POTS, tachycardia and low BP on standing. Although adrenal insufficiency is not very well known here and specialists do not have enough experience on dx and treating it, following my own suggestion, my Endo prescribed Florinef + hydrocortisone.Friends of the Adrenal Help Group forum (see my previous post) recommended taking some supplements (following my my blood lab results). I forwarded it to my GP and he agreed.These should be taking depending on your values (you will have to check with a blood test).I am on supplements of potassium, iron, magnesium, vitamin B complex, folic acid and calcium.As well as taking Sea Salt with water (1/2 teaspoon) in the morning and in the afternoon. Regarding my symptoms... a very wide range of them (remember that I might also have other hormones affected):POTS, dizziness, weight loss, nausea, fatigue, low blood pressure, weakness, chest pain, syncope, irregular and painful periods, decreased libido, thirst and increased nead to urinate, motion sickness, abdominal pain, salt craving, sweet craving, fasting hypoglucemia, low blood sugar, exercise intolerance, constipation/diarrhea, allergies, sensitivity to gluten, hypersensitivy to some drugs, hypovolemia, skin changes, hirsutism, easy deshidration, cannot cope with the cold and the heat, etc.Hope that this helps,LoveTessa Quote Link to comment Share on other sites More sharing options...
2manyfurkids Posted May 3, 2009 Report Share Posted May 3, 2009 Wow, it is amazing reading this. I am going through exactly the same thing. I haven't been to this forum in years because the doctors changed my diagnosis in 2006 from POTS to Bartter's Syndrome. They said it was a mild case. They kept me on the Florinef and prescribed prescription Potassium. I felt better for a long time. A couple months ago I started feeling bad again. Went back to my nephrologist I see for Bartter's and he ran a whole bunch of tests. He said it is not Bartter's(low potassium)because my K+ is never low despite being on Florinef, which lowers potassium. He thinks it is the adrenals or POTS again. Amazing! Back to square one!! I went through this in 2006 when I was real sick and passing out several times a day. First they thought Addison's Disease, then the ACTH stim test came back normal, so they said POTS. Then, I was feeling better on Florinef but not that well yet. Then, they said Bartter's. The combo of Florinef, potassium, and magnesium helped the most until recently. So, I'm wondering is it POTS and I need mipodrine? or is it adrenal insuffiency and I need cortisone added? I recently went off the Florinef because I am seeing a new endo on Tuesday and I frankly wanted to see what happened so she actually believed I had any symptoms. What a difference!! All of my old symptoms returned. I am getting bad chest pain, headaches, dizziness, nausea, fatigue, horribly cold, all the symptoms mentioned in this post, like you. I'm afrain they'll repeat the ACTH test and still no answers. They are going to do adrenal antibody testing too to see if I have antibodies for Addisons Disease. Does anybody have any ideas? I'd greatly appreciate it. Thanks, Karen. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 6, 2009 Report Share Posted May 6, 2009 Elevated angiontensin II has been found in a subset of POTS patients and this may effect kidney and adrenal stuff.??I know that the suggested treatment for adrenal fatigue helps my POTS anyway - but there are a variety of reasons why this may be the case. Quote Link to comment Share on other sites More sharing options...
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