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GP Involvement in Diagnosing Symptoms of ME that could be caused by Adrenal Problems

Discussion in 'Adrenal Dysfunction' started by LitlFrog, Nov 26, 2010.

  1. LitlFrog

    LitlFrog

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    CFS/ME and Adrenal Problems
    Might Low Cortisol Be Causing Some of Your Symptoms?
    Jul 17, 2008 Maija Haavisto - all wording below taken from this report.

    I have, like many, suffered a plethera of symptoms that fall in to one of a number of categories this category being the latest. What I found was that while I vehemently disagreed with health professionals trying to bracket me off with a psychological illness for an illness recognised as neurological in origin by The World Health Organisation, I was not averse to finding ways to get better while the science/research/medical community were still working on it and with no guarantees, to spur me on.. What I discovered when I carefully went through my list of symptoms was that while CBT & GET were NOT instrumental in aiding stabilisation or recovery (I continued to worsen, whether due to or despite them is arguable), my symptoms did all fit the adrenal dysfunction theory, whether or not that was applicable to any other ME/CFS patients - it was to me.

    I was grateful for what might be a thread of hope to indicate that while I have a very physical illness, from a holistic and environmental factors point of view, psychological factors could have impacted on how my physical functioning was able or not to cope and over many years caused long-term damage.
    I read the article below with interest and am not promoting anything here, but if this might feasibly be applicable to you - all I can do is hope that it helps. I have a new appointment booked with my GP who is open to the `Expert Patient' approach & knows how devastating I have found it to be rejected by employers and thrust in to the `justify my illness' to ATOS/the governement/the benefits system' on to feel relegated to this way of living against any choices I originally made to try like mad to stay in work..!

    I am hoping that with some psychological support for issues that may have impacted on me and caused me to be susceptible to contracting a serious viral infection and 14 years later being stuck with the ever worsening condition of ME, a test to check cortisol levels and adrenal functioning might pull me up out of the pit of despair that is my illness and provide some relief in a small way from symptoms (enough for me) and provide a little chink of light at the end of the tunnel..

    `Adrenal insufficiency/low cortisol may cause some of the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis'.

    Cortisol is a steroid hormone produced by our adrenal glands which is very important to our stress response. All stress - not just things we normally associate with the word "stress" such as being overloaded with work, but also anything from heat to infections - increases the production of cortisol.

    Elevated cortisol levels may cause some or all of the health problems associated with stress. But having too little cortisol, adrenal insufficiency, is similarly problematic, as without sufficient cortisol our bodies can not properly handle stress.

    Types of Adrenal Insufficiency
    Addison's disease, an autoimmune illness, requires life-long treatment with hydrocortisone (the synthetic equivalent of cortisol). Even then a sudden lack of cortisol can provoke an Addisonian crisis, a medical emergency. Most cases of adrenal insufficiency are not life-threatening, but still produce bothersome symptoms.


    There are two types of adrenal insufficiency: primary and secondary. In the former the problem lies in the adrenal gland, as in Addison's disease. In secondary adrenal insufficiency the brain does not produce enough of the hormones (ACTH and CRH) needed to stimulate the secretion of cortisol, or the body does not respond adequately to them. This is sometimes referred to as dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis.

    Adrenals and CFS/ME
    The symptoms associated with adrenal insufficiency bear striking resemblance to the symptoms of CFS/ME: fatigue, lethargy, muscle and joint pain, low blood pressure/orthostatic hypotension, hypoglycemia (low blood sugar), headaches, fever, cold and heat intolerance, nausea, anxiety and poor sleep.

    The similarity of the symptoms is probably not just a coincidence. Many papers have reported lower cortisol levels in people with CFS/ME, thought to be caused by secondary adrenal insufficiency. One study found that the adrenals of people with CFS/ME had actually shrunk by up to 50%.

    When adrenal insufficiency is suspected, a doctor usually orders a blood test for cortisol levels. In Addison's disease the levels tend to be very low, but in secondary insufficiency they may show up within the normal limits. There is no clear consensus as which one is the best test for diagnosing low-level adrenal insufficiency, but saliva testing is often recommended.

    If a person with CFS/ME is found or suspected to have adrenal insufficiency, treatment with hydrocortisone should be considered. Multiple studies have evaluated this therapy and most of them have concluded that hydrocortisone can be beneficial in CFS/ME.

    The dosage of hydrocortisone is usually 5-25 mg a day, taken in 1-3 doses. It is recommended to increase the dose in case of infections, heat and vigorous activity. In case of surgery the dose may need be greatly increased, up to more than 100 mg.

    Most people with CFS/ME, even those who are sensitive to medications, tolerate hydrocortisone without problems. Some may find that they do better with other steroids, like prednisone or dexamethasone. Licorice root can also be helpful, because it slows the breakdown of cortisol in the body.

    People are often averse to the idea of steroid therapy, but low doses of hydrocortisone do not have the risks of high-dose steroid therapy, such as immunosuppression, osteoporosis and weight gain. Low dose hydrocortisone is simply replacement therapy, like insulin for diabetics or thyroxine supplementation for hypothyroidism.

    References
    Scott LV, Teh J, Reznek R, et al. Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study. Psychoneuroendocrinology. 1999 Oct;24(7):759-68.

    Holtorf Ken. Diagnosis and Treatment of Hypothalamic-Pituitary-Adrenal (HPA) Axis Dysfunction in Patients with Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). J Chron Fatigue Syn. 2007;14(3):59-88.

    Read more at Suite101: CFS/ME and Adrenal Problems: Might Low Cortisol Be Causing Some of Your Symptoms? http://www.suite101.com/content/cfsme-and-adrenal-problems-a60729#ixzz16PhLXPty:In bed:
     
  2. rlc

    rlc Senior Member

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    Hi LitlFrog, Adrenal insufficiency is definatly a massively overlooked problem in regards to CFS and has all the same symtoms as CFS.

    One of the main reasons it is so overlooked apart from the failure of alot of doctors to do more then a few basic tests before giving a CFS diagnosis, is that the vast majority of GPs have no idea that a normal result on a cortisol test can still mean a major adrenal problem.

    As an example the referance range for morning cortisol is 9-25mcg/dl however above 19mcg/dl is considered to rule out adrenal insufficiency and sometimes people can have results above 19 and still have it. So what normaly happens when a GP does this test is they see it's in the normal range and say normal is normal so it's not adrenal insufficiency and miss the diagnosis. (For people in parts of the world where it's measured in nmol/L the range is 250-700 above 550 is normaly considered safe)

    Saliva cortisol tests are also unreliable the only test that can definitively diagnose these problems is the ACTH stimulation test. The other two test that should be done at the same time as morning cortisol, but frequently are not are serum ACTH and Aldosterone.

    ACTH is produced in the Pituitary gland if results for serum ACTH are high it indicates that the adrenals are damaged and the pituitary glad is making more ACTH to try and get the Adrenals to work, if the result on this test is low it indicates that the pituitary or hypothalamus are damaged.

    Aldosterone is a hormone that is produced in the Adrenal glands some of it's fuctions include maintaining salt and water balance in the body, if the results on this test is low it indicates that the Adrenal is damage.

    If there is any doubt about weather the patient has Adrenal insufficieny then an ACTH stimulation test has to be done, this involves injecting synthetic ACTH into the patient and measuring their hormonal response to it at half hour intervals low responses indicate Adrenal problems high can indicate Pituitary.

    All these tests should be done before a patient is put on hydrocortisone, florinef or try's licorice as there is the potential of very serious side effects, and it is important to know the level of Adrenal damage to work out how much medication is needed.

    Unfortunatly the vast majority of CFS patients never get the proper testing done and the fact that alot improve on cortef or florenef indicates that there's a high chance they have a major adrenal problem thats been missed.

    One interesting thing i read a few years ago, is that there has never been a endocrinologist involved in any of the major studies into CFS, i would imagine what they'd say about findings of 50% adrenal shrinkage in some CFS patients, would be something along the lines of, they've got adrenal insufficiency you idiots give them the right medication and send them home to enjoy their lives.

    One womens story of being misdiagnosed with CFS for 30 years when she had addisons can be found here http://www.patientopinion.org.uk/opinions/8719

    How to properly diagnose Adrenal insufficiency can be found here http://www.suite101.com/content/adrenalinsufficiency-a1543

    Some of the multitude of symtoms caused by two of the main adrenal diseases can be found here http://en.diagnosispro.com/disease_...orticoid-isolated-deficiency/10190-22900.html

    Information on ACTH stimulation test here http://www.acthstimulationtest.com/

    If any one has symptoms of Adrenal insuficiency they need these tests done, to make sure it hasn't been missed, if they have got it then it's normally very treatable and they can get their lifes back often in a few weeks.

    All the best
     
  3. soxfan

    soxfan Senior Member

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    I believe I have CFS but also AI. I say that because I had been on cortef for 4 years 15mg..when I started seeing an endocrinologist she decided I didn't need the cortef and proceeded to taper me off. My 8am cortisol was usually around 12 which she said was fine. When I finally got down to 2.5 I started having more trouble with exhaustion..I am now at the point of being unable to even walk for 20 min...have problems getting through my shift at work and major PEM.
    I am not sure I just have disease progression or it is because I really needed the cortisol. I just had my 8am done again and it was 8.5 (6-24 range) on the 2.5mg. I am feeling terrible. My endo wants me off but my doctor says I need it.

    I did have the ACTH test done and my starting cortisol was 8.5 and in and hour went up to 24.2 so that is why the endo says my adrenals are perfectly fine....

    I also have been having huge issues with adrenaline surges night and day for the past 3 weeks. I really have never felt this horrible since 2005....
     
  4. justy

    justy Senior Member

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    i just want to commnt on the flip side of AI. I was on a low dose of corticosteroids for a couple of years for lung problems whil i was in a long M.E remmission. In fact what happened to me waqs that the steroids i was on - a this point just high dose inhaled steroids - had wrecked my health completely and cause a massive M.E relapse.
    I would urge anyone thinking of steroid therapy to be extremely cautious. Most meds have side effects that can be crippling. It completely messed up my HPA axis, and my doctors didnt believ it was possible until they saw how my symptoms reducved once i self reduced the medication.
    I had horrendous menopausal symptoms (i wasnt menopausal, but was misdiagnosed as such) i also had all the symptoms of severe adrenal insufficiency.
    3 or 4 days after i started reducing the dose all my menopausal symptoms cleared up, and have stayed that way to this day. I still have M.E, but i am much better than i was before. They also seriously suppressed my immune system until i was having continous infections for obver 2 years with no relief. Now i am on a low dose and i no longer have to stay at home for fear of catching something.
    I also had a nightmare reaction to antidepressants that also helped to destroy my life. I only do natural now and it is working for me. I would urge anyone to think very seriously before taking any medications.
     
  5. soxfan

    soxfan Senior Member

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    justy- what dose are you on? i am pretty sure stopping the cortef has sent me into a bad crash. i have felt this coming on since i went down to 2.5mg in august. i was having trouble recovering from work etc...where as before it would only take a day. i am in really bad shape at the moment. i am on 5mg but felt best when i was taking 7.5 during the summer.
    i have had nightmare reactions to antidepressants also and will never attempt to try them again...it was so horrible.

    my endocrinologists both have different opinions on the cortef..one says i don't need it and the other says i do.
     
  6. rlc

    rlc Senior Member

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    Hi soxfan have your endos looked at your pituitary and hypothalamus. your ACTH stimulation test looks to rules out primary adrenal insufficiency and addisons because it has doubled.

    But it starting from a low base value and has more then doubled which can indicate secondary adrenal insufficiency here what a site about the ACTH stimulation test says In healthy individuals, the cortisol level should double from a value at least in the 20s within 60 minutes. If the cortisol level was a 25 before the stimulation (base level), after the stimulation it should reach at least 50 ug/dl.

    Interpretation for secondary adrenal insufficiency

    ACTH may stimulate cortisol by a factor doubling, tripling, quadrupling or more from a low base value in patients suffering from secondary adrenal insufficiency .More information can be found here http://www.acthstimulationtest.com/interpretation it also says that sometimes when people with results like yours, get the test repeated it can turn out to be AI

    Maybe your adrenals are fine but the problem is higher up in the pituitary or hypothalamus, or a second test will show it's AI, which would explain you feeling worse when on less cortef, might be worth getting them to look into it. have they checked Aldosterone and serum ACTH?

    All the best
     
  7. rlc

    rlc Senior Member

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    Hi justy, corticosteroids can really mess people up, and doctors should be alot more cautious before they give them to peple. With AI it's really important to get all the tests done first to confirm the diagnosis before taking anything. So sad to here you had to go through all that.

    My dad has Parkinson's and the amount of times they've given him the wrong medication which has caused horrendous side effects is unbelievable, one time he was within hours of dying before a juniour doctor at the hospital worked it out.

    Just yesterday we found out that his GP had given him a new medication, so i looked it up on drug.com and guess what it has four bad drug interactions with other medications he's on and is for Hypertension, he has Hypotension! So we're getting intouch with his speacialist tomorrow to get it changed, it's not the first time this idiot GP has over ruled the speacialist and given him medications that are bad for him! Doctors argggg.

    All the best
     
  8. soxfan

    soxfan Senior Member

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    ric- thanks for the information. i have never had the aldosterone or serum ACTH testing done. the doctor i am seeing now who is treating me for CFS will do them if i ask. he is the one that believes i need to be on the cortef because of the low am cortisol. he told me i should be up in the high teens to 20 mg in the am. i am staying on the cortef for now even though the endo wants me off...he said i was fine since the level tripled in 60 minutes. i was on 112mcg for my thyroid and the endo thought it was too high so after a year of playing with my dose i am right back to 112mcg!!! so i trust my CFS doctor more than the endo at this point. I started feeling really bad in March when my mediations were lowered so i really feel that is playing a huge part in my crash right now...it has been coming on for months.
     
  9. justy

    justy Senior Member

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    Soxfan - i am no longer on oral steroids - just inhaled dose, now 100mcg 2x day.

    rlc - you're Dad is lucky to have you to check on these things for him. It is sad but i have no trust in Doctors anymore. I cant bring myself to take anything they would like to offer me - its just too scary what might happen. The plus side to this is that i have had to build up my system myself and probably one myself a favour. My immune system is much stronger and my systemic candida is at least under control. My cramps and twitches and restless leg are gone - the night sweats are gone. My hormones are sort of finding their natural rhythm again.
     
  10. rlc

    rlc Senior Member

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    Hi soxfan, great to hear your doctor will do the tests for you, there has to be a reason for getting consistantly low cortisol results, and if you had low results before cortef withdrawl it's unlikly to be that.

    From my reading on the ACTH stimulation test you started from a low base value and then tripled which seems to indicate there might be a pituitary problem.

    The pituitary is also responsible for making TSH as well as ACTH and you say you've had alot of thyroid problems All you need to know on pituitary disorders can be found here http://www.pituitary.org/library/about.aspx

    There's other tests that can be done for AI this site says
    Patients with adrenal insufficiency are also tested for adrenocorticol antibodies (ACA) and antibodies to the hormone 17-hydroxylase. In autoimmune adrenal insufficiency, these antibodies are present with highest levels seen early in the disease course. Imaging studies are used to help evaluate damaged adrenal glands. In autoimmune adrenal insufficiency, the glands are reduced in size. link here http://www.suite101.com/content/adrenalinsufficiency-a1543 maybe your doctor will look into doing those as well.

    There's tests for other causes of Ai that can be done things like hemochromatosis etc information on other causes can be found here http://en.wikipedia.org/wiki/Adrenal_insufficiency

    It looks to me like your endo's havn't been investigating all the possible causes properly, hopefully your other doctor will sort it all out for you.

    All the best
     
  11. rlc

    rlc Senior Member

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    Hi justy, glad to hear things are starting to improve for you! personaly i think it's mad how doctors hand out medications with out first establishing a diagnosis that the meds are proved cure. i also lost trust in doctors a long time ago, after lot's of bad reactions to meds and them failling to do correct testing and consistently stuffing everything up, i've seen about 25 doctors and have only recently got a good one whose prepared to listen and look at up to date information,it looks like everything going to be sorted out soon, and i've actually got what i've been telling them for the last three years is the problem.

    All the best hope things continue to improve
     
  12. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi, if a person had an Adrenal problem, would they feel almost "immediate" relief once put on steroids? I was on dexamethasone for 5 days after a minor oral surgery and felt just awful. I've taken prednisone in the past and always get insomnia, agitation, restlessness, etc. I even have some problems with steroid nasal sprays. Is cortisol different than the medications I mentioned? I wonder if is possible to have low cortisol, but be unable to tolerate it. Of course, this would be different than Addison's disease or something very serious.
     
  13. soxfan

    soxfan Senior Member

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    ric- yes...my doctor will figure it out for me. he is the one that had me on the correct dose of levoxyl from the very beginning. i wasted an entire year with the endocrinologist trying to prove i didn't have hypothyroid! i am unsure about the whole adrenal thing...all i know is that i feel much better on cortef 5mg and am able to recover much quicker from PEM. my endo knows nothing about CFS...
    i am sure i am back on the correct dose of levoxyl but will have my levels tested in january. thank you so much for the links...i find it all very interesting and appreciate you taking the time to post them for me!

    i also have a hard time trusting doctors as i have had some really bad ones over the past 6 years..the last pcp i had wrote in his notes that he wanted me to start aerobic exercise 5 times a week so that just shows how much he knows..i can add that he is also no longer my pcp.

    Kim
     
  14. rlc

    rlc Senior Member

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    Hi the moon is blue prednisone. can surpress adrenal function, but can some times be used for adrenal problems as can dexamethasone, but the normally prescibed drugs for it are cortef and florinef, they have to be prescribed in the right doses depending on the level of adrenal damage to be affective, so not having improved when on these in the past unfortinatly dosen't prove anything. The only way to tell for sure is to get the morning cortisol, serun ACTH, and Aldosterone tests done and if there's still doubt follow up with the ACTH stimulation test.

    There are also conditions where the body is over producing cortisol and taking these steroids would make things worse, but the above tests should be able to identify that as well. it's also possible to have allergic reactions to theses meds, and that you have another condition which you shouldn't take steroids for.

    Sorry it's all a bit of a complicated area, and i can't give you a difinative answer but if in doubt about AI get the tests done just in case.

    All the best
     
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Good to hear! Fire them if they are of no use!!
     
  16. soxfan

    soxfan Senior Member

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    Absolutly...now i am on the search for a new pcp...this will be my 4th in 6 years. i don't think i would even bother but i need one for referals so i don't have a choice...oh and i decided to quit the cortef. i am going to believe my new endocrinologist when he says my body in capible of making what i need. i guess i will find out how i feel after being on them for 4 years!
     
  17. rlc

    rlc Senior Member

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    Hi soxfan, before you stop the cortef make sure you get the serum ACTH test done, your ACTH stimulation test does show that your adrenal glands are working properly, but it's still possible that there not doing anything because there not getting the message to work from the pituitary glad, because it's not releasing enough ACTH, which may explain why you've been feeling better on more cortef. The serum ACTH test will clear this up.

    All the best
     
  18. soxfan

    soxfan Senior Member

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    I talked with my doctor who is treated me for CFS and he did want me to stay on the cortef. We will discuss the tests to have done when I see him next month. Even though the endo wants me off the cortef I am going to do what makes me feel best for now. I will be sure to have that test done..my doctor always thought I had a pituitary problem from the start. Thanks.....
     
  19. rlc

    rlc Senior Member

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    Hi soxfan, so your doctor thought you had a Pituitary problem from the start and hasn't run the tests for it (mutter, curse, dispair) If you want to go and see someone who actually knows what their doing in regards to pituitary problems, heres a list of doctor recomended by the pituitary diseases association, if you find one in your area click on the view profile tab and it will give you there contact details
    http://www.pituitary.org/medicalresources/physicians.aspx

    If you or your doctor want to contact some one from Pituitary.org links here http://www.pituitary.org/about/contact_us.aspx

    Also wondering how well you're thyroids been investigated ultra sound, CT etc etc link here about all the tests for it and lots of other information http://thyroid.about.com/od/gettestedanddiagnosed/a/testdiagnose.htm

    All the best
     
  20. soxfan

    soxfan Senior Member

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    My current doctor (cfs) will do any test I ask for so when I see him in January we will be talking about the whole adrenal problem or not? He wants me on cortef and the endo doesn't. I did have an ultra sound about 10 days ago. I need to call and find out the results as I already knew I have nodules. Thank you for the links...I will take a look.
    Plus to let you know I was sent to the 'best' endocrinologist in the state and look where that got me! I should have never left my cfs doctor for a year because I went from being stable to a downward spiral and I think alot of it has to do with her (endo) changing up my doses.
    Thanks again!
     

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