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Prednisolon and pituary MRI Imaging

Discussion in 'Hormones' started by Pearl, Mar 9, 2014.

  1. Pearl

    Pearl

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    Hi

    I ought to take Prednisolon (rheumatologist) for a newly found autoimmune disorder but I have several hormone issues too and will have a MRI scan cranium in about 4 weeks for a pituary diagnosis.

    My 'normal' physician, however, isn't sure if the Prednisolon would influence the imaging and therefore wants that I delay the Prednisolone. My autoimmune illness (not yet clear which sort, supposed mixed connective tissues disease) gets worse.

    Does anyone know, if the cortisone has any affect in regard to the MRI?

    Thank you very much.
  2. Ema

    Ema Senior Member

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    It's my non-medical opinion that high dose steroids could affect the MRI, especially if they are looking for inflammatory lesions.

    If it were me, I would try to move up the MRI.

    But it's most important that your doctor make the decision because s/he knows the history of your autoimmune disease and whether delaying treatment would make a difference to your overall recovery.
  3. Pearl

    Pearl

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    Thank you very much, Ema. These are my thoughts too, I'll try to get the MRI earlier, though it would mean traveling to another town supposedly.

    To deal with an autoimmune issue is not easy, so to say. The word rapid seems not to exist in the medical world of my country.

    When I reviewed my lab results in the beginning of 2013 I detected that the ANA have been 1:800 (RR < 1:100) (sprinkled/granular pattern) in June 2012. But no one noticed.

    March 2013 I asked for a new test: 1: 640 (RR <1:100) granular pattern. This test was done in a major clinic/ immunology and they wrote that the patient should see a rheumatologist.

    It is extremely difficult to get an appointment with a rheumatologist. I had to wait eight months. Searching for another option I finally saw a family physician who was told to be a rheumatologist beside being a family doctor. This wasn’t the case, though, during his studies, he has had some rheumatological training. He sent my blood to a specialised lab where a high value of 1:5120 was detected. The doctor was not really willing to accept me as patient but he let me know that he would prescribe high dose prednisolone for a week, watching if there is some improvement and then slowly wean.

    This was about 2 months previous the appointment at the rheumatologist for whom I had to wait the 8 months. So the decision was I should see the rheumatologist before starting the Prednisolone. At the rheumatologist the ANAs were 1:160. She did not find my symptoms typical “enough” to justify a therapy, therefore: wait and re-check six months later.

    I was stunned, not understanding what was going on and decided to send my blood myself to the specialized lab again where it was tested the first time. Result: 1:2650.

    I called the “family physician" again to ask, if ANAs can fluctuate that much. He answered that they fluctuate indeed but not to this degree. And he added that he had sent my blood more or less “by accident” to the specialized lab, “normally we sent it to our localized lab”.

    If he hadn’t done that - imagine - I as patient, I would not have got to know about my autoimmune problem!

    What to do? The physician at home was of no help, he demanded I see a rheumatologist. I made great efforts to find another one. There are two in a distant town, waiting time 9 months.

    I resume:

    2013 5 Sept. 1:5120 (< 1:100) measurement in specialised lab
    2013 two months later 1:160 rheumatologist did the measurement
    2013 3 weeks later 1:2650 control in the first specialized lab
    2014 on 28 Jan I was sent to a nephrologist (problem with potassium) who did ANAs too, but did inform me only when she got the result: ANA 1:160 (<1:100)

    Doctors seem to like to test ANAs – though each of them had a copy of my results (!) - but they seem unable to help the patient.

    2014 on 19 Feb I saw a supposed Lyme doctor, who - you guess - did ANA: 1:160 (local lab).

    With an ANA of 1:160 and symptoms that are “not typical” and only discrete inflammation markers no “physician starts a treatment.

    My BSG is low (3), my CRP is in range, only the high sensitive CRP is slightly elevated.

    But no one takes in account that I eat "anti-inflammatory", avoid toxions, do a lot of things and take supplements since many years.

    I have been diagnosed with CFS more than 15 years ago but I’m not at all sure if the diagnosis is correct. 15 years ago, there have been even less criteria than today and my symptoms have been predominantly hormonal (thyroid, adrenal, maybe pituary).

    My health declined the first time after the cesarean delivery of my second child, when I barely woke up after anesthesia and months later complained of fatigue and lack of energy. Thyroid became difficult and some years later sex hormones dropped “prematurely”. From my view of today, this can point to the pituary. The second and permanent set-back began after an improper removal of seven amalgam fillings. At that time I had the third of hepatitis B vaccinations, too. Six weeks after the amalgam removal nothing has been like before and my life was ruined.

    It is nearly impossible to find an experienced physician in my country (Europe). Even with the “scientific” ANA today there are many obstacles.

    Since about twelve months I notice new symptoms which I didn’t relate to an autoimmune event at once, but through reading I learned they are:

    - Skin lesions as well as mucosal lesions heal very poorly only. No problem formerly.
    - Cheeks appear red often times, whereas I looked pale all other years – butterfly shaped erythema.
    - Bad blood circulation: hands and feet cold and often slightly blue. Formerly cold yes, but never looked blue.
    - Eyes, throat, mouth very dry
    - Light sensitive
    - I have to avoid the sun because my face becomes very hot and looks inflamed red
    - I have great difficulties with temperature regulation – though this is not new
    - I got small white spots on my lower legs = vitiligo

    What I got to know is that the understanding how to deal with an autoimmune process in the beginning is very heterogenous. The majority of physicians will not start any treatment till other lab marker verify what sort of autoimmune illness it is.

    Besides dealing with the autoimmune issue I’m trying to get a workmanlike diagnosis of my hormonal issues to rule out e.g. secondary adrenal fatigue from pituary/ hypothalamus. This is difficult alike. Nevertheless, blood was drawn and I had a CRH test four weeks ago from an endocrinological practice. The referral for the MRI scan I got from my local physician.

    The endocrinologist who did the CRH called and said “everything is finel”. But I do not yet have the actual numbers.

    My assumption was that the autoimmune process developed on ground of inadequate or defective cortisol over years as illustrated e.g. in the book of Jeffries, who helped many autoimmune cases with physiological HC replacement.

    What made me sort of hesitant to start the Prednisolon was that my hormonal evaluation is not complete and Prednisolon would preculde exact hormonal testing.

    I have an activated immune system since many years. It is feasible to get lab work, but it is not possible to find someone for qualified treatment.

    The physician I saw some days ago, who wants to start Prednisolon at once, is one I, too, found by chance. He is a family physician like the first one, and like the first one he spent some time in rheumatology. After all, he is the first one who asses my symptoms indicative of mixed connective tissue disease. He says that there is only one option to test whether a “real autoimmune disease” is going on, that is to take 30-50 mg of Prednisolone 5 to 7 days and watch what happens.

    Thank you for listening.

    Pearl
    Last edited: Mar 9, 2014
  4. Ema

    Ema Senior Member

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    Wow, Pearl. It sounds like you have really been through the wringer. I'm sorry you are having such troubles getting answers.

    All I can do is tell you what I would try to do in your position and then hope you will find it of some use with the doctors and testing you have available to you.

    First of all, there are different testing methods labs can use to test an ANA. This could certainly account for some of the variation you are seeing.

    Plus autoimmune disorders "flare" and that could also affect your ANA.

    The crucial factor here is that they are *all* positive in my opinion.

    I don't know what a BSG test is (maybe we call it something different?).

    Due to your difficult delivery, a pituitary MRI seems wise. Empty sella syndrome might be a possibility that would explain your symptoms in that regard. However, I will warn you that pituitary problems are extremely difficult to identify on MRI and are often missed. If it doesn't show up, it might not mean that everything is OK. I would rely as much on blood/saliva testing in this respect to determine and treat your deficient hormone levels.

    Have you done recent thyroid testing? Ever had cortisol testing beyond the CRH test? What about a saliva cortisol test?

    Are you in early menopause? Hormone replacement?

    The symptoms you list sound like a combination of lupus, Sjogren's and Raynaud's. Almost to the point of a textbook definition.

    If it were me, I would want to have the specific testing for lupus antibodies done...before taking steroids to suppress them and make them more difficult to detect.

    This is a great page that describes the types of lupus antibody tests available:

    http://www.lupus.org/answers/entry/lupus-tests

    There's almost no question in my mind that a high dose of steroids is going to make you feel "better" in the short term. But that will leave you with no diagnostic answers and possibly a lifetime of pharmacological steroid treatment which itself carries significant risks.

    Hope that helps...
  5. Pearl

    Pearl

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    Thank you very much for input, Ema. I’m very grateful for that.

    AUTOIMUNE Situation

    But that will leave you with no diagnostic answers and possibly a lifetime of pharmacological steroid treatment which itself carries significant risks.
    The crucial factor here is that they are *all* positive in my opinion.

    Yes. I agree. My high priority therefore is to finally get a D I A G N O S I S !

    And then do a causative treatment.

    I act on the assumption that a lot of my problems stem from hormonal issues and I hope that - with help - I will be able to improve them and do other causative measures and then see what is left from the autoimmune process. My fear, however, is that time will be running with the immune situation while coming along with the hormonal issues is ropy and slow with our medical system/ doctors.

    There are articles that suggest that in autoimmune disease cortisol is a key player. What I can imagine is taking physiological cortisol replacement, even if this would be lifelong. What I cannot imagine yet is taking basic rheumatologicals lifelong.

    I don't know what a BSG test is (maybe we call it something different?).

    Sorry, it is ery sed rate. It is always low.

    If it were me, I would want to have the specific testing for lupus antibodies done...before taking steroids to suppress them and make them more difficult to detect.

    Yes. The examination from specialized lab included the following – which, at this point in time and to my understanding, do not give a marker for lupus or sjögrens or vasculitis:

    ANA Flourescense (HEp2 cells) positiv 1:5120 small sprinkled

    ANA Differentiation (Elisa): all negative
    RNP 70
    U1RNP
    SmD
    Ro (SS-A)
    La (SS-B)
    CENP-B
    Jo1
    ds DNA

    ANCA fluorescence (Anti-neutrophil cytoplasmatic antibodies)
    C-ANCA negativ
    P-ANCA negativ

    ANCA Differentiation (Elisa):
    ACPA (MCV-AK) negative

    Regular metabolic panel is without pathological findings.
    ---------------------------------------------------------------------

    Main SYMPTOMS (0 = no symptoms, 10 = maximal symptoms)

    listlessness/apathy (8)
    exhaustion/ no energy (8)
    weakness,asthenia (7)
    reduced overall capacity (7)
    unable to cope with stress (8)
    fatigue (5)
    poor memory (5)
    inability to concentrate (5)
    freezing a lot (8)
    no stamina (8)
    poor muscle tone
    loss of muscle mass
    hypoglycemia
    sort of depletion/ wasting (4)
    constipation
    loss of appetite
    each night going toilette
    digestive disorders
    dry skin
    hair loss
    irritablility
    heart palpitations
    algesia
    overall feeling of dehydration
    edema around the eyes every morning

    I sleep deepest in the morning when the alarm rings, barely wake up. Sometime I come from so far that a wave of nausea swills over me. I feel worse in the morning and between 2 to 4 pm. Since some weeks I feel worst in the evenings and especially at night when I wake up: terribly depressive.

    One of the most torturing single symptoms is heat. Heat at night, when I'm covered in bed. I can sleep (take a lot of magnesium), but each night, in the second half, one or two or five times an attack of heat plagues me. I feel so hot as if I were sitting in a cooking pot. Not like host flashes formerly, which came quickly and disappeared quickly like a wave. The heat stays from 5 to 30 or more minutes, completely irregular. The temp, when measured during such a heat excess, is low. I sweat barely. When I remove the blanket I freeze terribly.

    I would rely as much on blood/saliva testing in this respect to determine and treat your deficient hormone levels.
    Have you done recent thyroid testing? Ever had cortisol testing beyond the CRH test? What about a saliva cortisol test?
    Are you in early menopause? Hormone replacement?

    HORMONAL situation - will continue soon
    Last edited: Mar 12, 2014
  6. Ema

    Ema Senior Member

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    It looks like you're well along the right track! I'm so happy to see you've had all that testing.

    And now I understand where the "Mixed Connective Tissue Disorder" diagnosis came from. It's what they call lupus when you don't have any antibodies for lupus...Ugh. What a problem for you...

    One more suggestion for you is to test your immunoglobulins (IgG, Total and Subclasses). If you have low levels of antibodies in general, it might make it more difficult to diagnose an autoimmune disease.

    Let me know what comes up with your hormonal testing...especially the cortisol.

    Hang in there!
  7. Pearl

    Pearl

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    I M M U N E S Y S T E M

    One more suggestion for you is to test your immunoglobulins (IgG, Total and Subclasses). If you have low levels of antibodies in general, it might make it more difficult to diagnose an autoimmune disease.

    6 February 2014

    Alpha1 globulin 4 % (2.9-4.9)
    Alpha2 globulin 9.3 % (7.1-11.8)
    Beta 1 globulin 6 % (4.7 -7.2)
    LOW Beta 2 globulin 3.6 % (3.2-6.5)
    LOW Gamma globulin 9.9 % (11.1-18.8)

    LOW IgA 0.4 g/l (0.7-4) – same result since many years
    LOW IgG 6.7 g/l (7-16) – fluctuates most time around 7
    IgG subclasses not tested
    IgM 1.1 g/l( 0.4-2.3)
    HIGH IgE 171 ku/l (0-91) – IgE most years little bit elevated

    C3 complement 1.53 g/l (0.9-1.8)
    C4 complement 0.36 g/l (0.1-0.4)
    rheumatoid-factor 10 IE/ml (0-40)
    transglutaminase IgA 0.1 U/ml (0-7)
    transglutaminase IgG < 0.7 U/ml (0-7)

    2013

    White blood cells 7800.00 (4000 – 11000)
    Lymphocytes 2031(1200-2300)

    T3 cells 1348 /µl (1000 – 1700)
    T3 cells 66.4 %(67 – 80)

    LOW T4 helper cells 629 /µl (500 – 1000)
    LOW T4 helper cells 31.0 % (35 – 55)

    T8 cells 615 /µl (350- 800)
    T8 cells 30.3 %(20- 38)

    LOW ratio T4:T8 1.02 (1.20 - 2.20)

    HIGH T8 suppressor cells 13.3 % (< 13)

    HIGH NK1 cells 171 /ul (< 160)
    HIGH NK1 cells 8.4 % (< 8)
    HIGH NK 2 cells 140 /ul (< 70)
    HIGH NK2 6.9 % (< 3.0)
    NK 3 cells 398 /ul (< 430)
    HIGH NK 3 cells 19.6 % (< 19)


    HYPOTHALAMUS – PITITARY - ADRENAL - AXIS

    I really have to apologize for my lengthy story – but I don't know how to do it otherwise and I need some help, please.

    One of my main questions is if there is enough functional cortisol in my body.

    Endocrinologists say: Everything is fine and my complaints don’t apply to their specialty (!).
    But they look at lab results only and never took in account signs and symptoms, nor did any endocrinologist ever do a physical exam.
    They do not consider that my serum cortisol and ACTH is always in the low normal range.
    And they do not use saliva cortisol, because it’s “too inaccurate”.

    I did saliva cortisol on my own, sent it to a lab that runs such tests.

    In my regard
    - serum morning cortisol is most of the time in the lower half of normal range
    - when given ACTH, cortisol is excellent
    - ACTH in serum is always low
    - when given CRH, ACTH is good

    Thus, there seems to be not enough stimulation from pituitary or hypothalamus.

    If the cortisol is low, as it is, and if the pituitary is healthy, the ACTH should be high.
    Or is my ACTH low, because there is “enough” functional cortisol in the circulation?

    The first time I was tested in a major endocrinological practice in my town: 2011 ACTH-test and 2012 CRH-test. Currently I had a blood draw and a CRH-test in a distant endocrinological practice.

    All questioning would be dispensable if 5 mg of Prednisolone and later 25 mg of HC (divided doses) in 2011 to 2012 had yielded better results, when a practitioner allowed a therapeutic trial. I wasn’t able to augment my thyroid hormone supplementation enough regarding my symptoms and the reasoning was that the adrenals may not be able to cope with the thyroid.

    Meantime, I learned that adrenal insufficiency in ME/CFS is oftentimes secondary.

    Also, I read (don’t remember exactly, but suppose it has been in the publications of Dr. Baschetti, Italy) that in secondary adrenal insufficiency, 50% of people don’t feel improvement from HC. I would very much like to know if that is true and how it could be explained.

    I’ll get back to my experience with Prednisolone/ HC at the end.

    Cortisol Saliva Dec 2013
    8 AM 1.3 (+) 6 months before 0.42 (RR 0.15-1.00)
    Noon 0.26 (-) 6 months before 0.16 (-) (RR not given)
    4 PM 0.07 (-) 6 months before 0.13 (-) (RR not given)
    8 PM 0.07 (-) 6 months before 0.07 (-) (RR 0.07-0.22 - this is their RR for 2 PM)

    Cortisol Serum 9 AM - measured between 1994 to 2014
    µg/dl (RR 5-25) 12.3 - 13.4 - 13.7 - 9.77 - 15 - 9.36 - 11.49 - 12.5 - 23.6 - 14.3

    I know that serum cortisol doesn’t tell much, but it is what doctors love to test

    converted to mmol/l these would be e.g.
    µg/dl 12.3 = nmol/l 339.48
    µg/dl 9.36 = nmol/l 258.33
    µg/dl 23.6 = nmol/l 651.36

    Quote: “…include < 3 mcg/dl; 83 nmol/l or exclude > 19 mcg/dl; 524 nmol/l adrenal insufficiency. However, most patients will have intermediate values and will require dynamic testing.”
    Source: http://www.ncbi.nlm.nih.gov/pubmed/14604069

    Cortisol Free in 24h urine Jan 2014
    96 (RR 36-137)

    ACTH serum measured between 1994 to 2012
    pg/ml (RR15-70) 15 - 14 - 11.1 -16.1 - 8,4 - 9,84

    I read: decreased ACTH or at least ACTH that is too low (improper) for the cortisol value points to secondary or tertiary problem

    ACTH test July 2011
    Cortisol
    0 min 20,4 (RR 5- 25)
    30 min 34,4
    60 min 40,4

    ACTH
    0 minn 18,51 (RR 15- 90)
    30 min 9,06
    60 min 2,83

    Endocrinologist wrote: „Clearly exuberant increase of cortisol, ACTH adequate suppressed through ACTH what demonstrates correct pituitary regulation. The present result documents a considerable level of stress in the patient.”

    My interpretation: If there is a lot (!) of ACTH, then my adrenals put out cortisol “as it should be”. No Addison’s.

    "Secondary adrenal insufficiency is adrenal hypofunction due to a lack of ACTH. Symptoms are the same as for Addison disease, but there is usually less hypovolemia: Diagnosis is clinical and by laboratory findings, including low plasma ACTH with low plasma cortisol. Treatment depends on the cause but generally includes hydrocortisone." Source: http://www.merckmanuals.com/profess...isorders/secondary_adrenal_insufficiency.html

    2012 September
    CRH-Test 8 AM, fasting
    Cortisol µg/dl
    0 min 20,1 (RR 5- 25)
    15 min 22,6
    30 min 22,9
    45 min 22,5
    60 min 22,6

    ACTH pg/ml
    0 min 8,51( RR 15- 90)
    15 min 40,22
    30 min 26,85
    45 min 27,34
    60 min 21,51

    At that time, I took about 7.5 mg HC (was weaning) 31mcg T3, and HRT.
    The endo advised to pause HC only the day of the test and the day before.

    Endocrinologist wrote: "In the CRF test ACTH was stimulated properly through CRH, therefore the pituitary must clearly be excluded as a cause of adrenal cortical insufficiency. From endocrinologic perspective the problems described by the patient cannot be explained through hormonal disturbances. Further diagnostics should not be done."

    I read that a significant increase of ACTH in the CRH-test points to tertiary AI (hypothalamus). In other words: Increase of ACTH or cortisol suggests that the pituitary works properly and the problem may lie in the hypothalamus.

    2012 September
    sodium 137.9 mmol/l (135-155)
    potassium 3.82 mmol/l (RR 3.5-5.6)
    cortisol 8.72 µg/dl (5- 25)
    ACTH 16.13 pg/ml (RR15-70)
    DHEA-S 0.11 µg/dl (RR< 2.5 post meno)
    HIGH LH 51.99 mIU/ml (RR < 10 post meno)
    HIGH FSH 80.1 mIU/ml (RR < 10 post meno)
    Renin µU/ml 40.4 (RR7- 40)
    Actually I take:
    T4 37 mcg + T3 2x 6mcg
    some HRT (bioidentical creams, bi-est, progesterone, testo)
    potassium 2500 mg/day (I think this equals 35 mEq)
    supplements


    2014 January 28 – 8 AM laying down
    within RR: Creatinine, BUN, urea, Hemoglobin, Hematocrit, RBC, MCH, MCHC, MCV, platelet count, AST/SGOT, ALT/SGPT, albumin, protein, CRP, Sugar, HBA1C, Ferritin, ALT, Triglycerides, HDL, LDL

    WBC 5,83 (3.6-9.6)
    Sodium 140 mmol/l (132-146)
    Potassium 4.6 mmol/l (3.5-5.1)
    Calcium 2.2 mmol/l (2.15-2.58)
    Phosphorus 0.93 mmol/l (0.81-1.45)
    Magnesium 0.96 mmol/l (0.53-1.11)
    PTH 37 ng/l (14-72)
    LOW 25-OH-D 14,36 - ug/l (20-70)
    HIGH Amylase 103 U/l (28-100) – not the first time (autoimmun?)
    Lipase 44 U/l (7-60)
    Cholesterin 218 mg/dl (50-200)
    HIGH Vit B12 1624 pg/ml (197-866)

    LOW TSH 0.01 (0.27-2.5)
    LOW FT4 9.4 ng/ml (9.3-17) - I take 37 mcg T4
    FT3 5.58 pg/ml (3.5-6.5) - I take 2x 6mcg T3
    TPO ab 22.4 IU/ml (0-35)
    TRAK ab 0.64 U/l (0-1.75)

    LOW DHEAS µg/ml 0.4 (RR 0.4-4.3 post meno)
    Free Androgenindex 2.7 (RR 0-3.5)
    SHBG 95,9 (RR 18-144)
    Estradiol pg/ml 209.1 (RR 5-498 post meno)
    Progesterone ng/ml 5.6 (RR 0.1-27)
    FSH mIE/ml 77.6 (RR 3.5-134)
    LH IU/ml 45.3 (RR 1-95.6)
    Prolactin ng/ml 15.9 (RR 4.8- 23.3)
    Testosterone ng/ml 0.76 (RR 0.03- 0.48 women post meno)
    STH µg/l 4.37 (RR 0-6.88)
    IGF1 ng/ml 142.4 (29-251)

    HIGH Aldosterone 230 ng/ml (29-145) – 8 AM, fasting laying down (I take sodium and potassium, but not the morning of blood draw)
    Renin 17.6 ng/l (1.7-23.9)
    Aldosteron-Renin-Quotient 13.1 (< 20)

    2014 February 6
    I'm not sure if the values from February 6 are valid: I had a lot of stress: rose 5:30 AM, went by train 3 hrs, walk 20 min, searching way in foreign town, talked with endo, 11 AM blood draw. During blood draw I was sitting, not fasting, have taken sodium and potassium that morning, because I had gotten no instructions.

    Aldosterone 92.1 ng/l (10-160)
    Cortisol serum 155.4 µg/l (23-194)
    Renin 11.2 ng/l (1.7-24.9)
    Aldosteron-Renin-Quotient 8.2 (< 20)
    ACTH 12.3 ng/ml (4.7-48.8)

    2014 February 18
    CRH test 2 PM, 4 hrs fasting, 4 days no HRT
    I had stress: 3 hrs by train, 20 min walk, when arriving at the endo they apologized for not having the CRH medication, thus I had to leave and fetch it myself from the pharmacy, stairs up, stairs down (skipped heart beats), no rest, sitting during the test

    ACTH pg/ml
    0 min 14.10 (RR 4.7-48.8)
    30 min 34.0
    60 min 8.3
    120 min 4.7

    Cortisol µg/dl
    0 min 224.6 (RR 23- 194)
    30 min 251.7
    60 min 233.7
    120 min 14.78

    ALDOSTERONE and POTASSIUM

    In 2012 potassium was measured in whole blood (red blood cells) and was found below the lower RR. Since then I take potassium and had to increase to 5 tablets (each 500mg) a day. Since I take that much potassium I rarely have tachycardia and skipped heart beats, as before. The potassium value in red blood cells slowly increased. Potassium in serum is controlled every 4-6 weeks and it is always in the lower half of RR. I would very much like to stop the potassium intake.

    Potassium in 24 hr-urine was only slightly elevated lately, meaning that my kidneys loose some potassium, but the nephrologist said that it is not much and therefore cannot explain the high potassium need. No doctor, not the nephrologist, nor endocrinologist can explain hwy I need so much potassium.

    The practitioner I consult currently suggest trying an aldosterone blocker, e.g. Spironolactone. On the one hand, I’m eager to stop all that potassium, on the other hand I’m hesitant as long as no one knows why I need so much potassium.

    Aldosterone
    2014 January pg/ml 230 (RR 29-145) - preanalytics have been correct
    2012 June 103 (RR 20-160)
    2011 May 174 (RR 20- 150)
    2011 July 236.2 (RR 20-160)

    With the Aldosterone it is difficult, as it depends on serveral things that have to be respected (activity, sitting/laying while blood is drawn, salt intake ...)

    I love (crave) licorice candy, but I don’t eat licorice.
    There are publications saying that increased aldosterone is damaging in the long run.

    Regarding potassium, I’m researching Gitelman’s Syndrome
    http://barttersite.org/what-is-gitelmans-syndrome/
    Gitelman’s syndrome is a rare inherited defect in the renal tubule of the kidneys. This defect causes the kidney to waste magnesium, sodium, potassium and chloride in the urine, instead of reabsorbing it back into the bloodstream. Urine calcium levels are lower than normal, despite normal serum values. This syndrome does not cause kidney failure nor does it cause the kidneys to function abnormally. The kidneys are normal. The problem is the reabsorption of important electrolytes and minerals.

    PITUITARY

    There is one more symptom pointing to the pituitary - ADH: I pee a little too much: about 3300 ml/day. The lab always notes that this is “too much”, but no doctor listened. Also, I have to go to the toilet each night though I do not have heart insufficiency. The phenomenon is described e.g. in A. Cutler ‚Amalgam Illness‘. I drink about the same amount as I pee, but a healthy person pees less, as we leave water through bodily fluids like sweat and others, too. I have little thirst, but I feel dry/ exsiccated all the time.

    Therapeutic trial cortisol:
    2011 6 months Prednisolone 2.5- 5 mg
    2012 6 months HC 25 mg (divided doses)

    I definitely felt more energy the first 4, 5 days of taking HC, but in the following days this faded away. As if the pituitary noticed the intake and reduced its stimulation at the same amount.

    While taking cortisol, I had more hunger, put on 4 pounds of weight, joint pains (mild) stopped and skin blains disappeared, my commonly low BP (90/70) became normal (120/80) for the first time in years, and the temperature was more stable and not fluctuating from day to day, which, according to Dr. Rind, is a positive sign regarding the adrenals.

    But because I missed an overall feeling of well-being and had not more energy, because it was difficult to tell, if there was a benefit at all, because I had difficulties with tachycardia and arrhythmias - the low potassium was not yet detected and the HC aggrevated the situation as it had a mineralocorticoid effect in my case – and because last but not least, I hadn’t been able to increase my thyroid hormone supplementation while on HC, I weaned te cortisol

    Afterwards, to the second guess, it might be, that I have been a little bit more active while on cortisol. But, as I said, it’s difficult to tell, was too subtle and could not be felt directly. I remember e.g. that I did several things like painting a wall, what I never repeated since then.

    In several books from experienced US and GB authors I almost always read that patients with Adrenal Fatigue felt improvement very soon from HC, oftentimes HC was the missing piece. But I cannot remember that these authors talked about secondary adrenal insufficiency, therefore this may not apply to secondary?

    I also read, that taking Prednisolone or HC is meant to give the adrenals a “rest” so that they may recover. “Giving the adrenals a rest” - in my understanding - would mean, replacing some (or all) of the cortisol that the glands normally produce. And, in turn, this would mean that there is not more cortisol than before and therefore no more energy, not before the adrenals are recovered. Or is this loose thinking?

    Before I tried HC, I took all sorts of adrenal support, vitamins, licorice, glandulas .. but never felt improvement.

    One may even be resistant to cortisol – receptor-resistance.

    Jeffries: Myth #4: There is a perfect way to test for cortisol deficiency.
    Facts: Again, there is no such thing as a perfect test. Cortisol is particularly difficult to test because blood levels can vary by the minute. Some people are even resistant to the effects of this hormone.5,6 So, even “normal” levels may not be enough to keep some people healthy. In his book, Dr. Jefferies addresses this difficulty and recommends that a “therapeutic trial” is often the best approach.7 Jefferies is reported to have told his students, “When in doubt, treat the patient.”


    THYROID

    Lab values see above 28 Jan 2014

    I have a goiter and had a partial thyroidectomy in 1991 because I was diagnosed having a “diffuse autonomy” though no one realized then that the endocrinologist had changed my thyroid medication from plain T4 to T4+Iodine, so it may have been “the iodine”.
    Whole family has a goiter, but they don’t know of antibodies or if there is inflammation.

    2013 September
    scintigram: struma, nodules, cysts (same as last year)
    cysts punctuated: no malignancy
    from 7/06 to 3/12 my thyroid grew from 22ml to 44ml

    From 3/12 I took T3 only (25 mcg) because I had had a very high RT3 of 1293,6 pg/ml (RR 215-637). With T3 only RT3t soon came back to normal.
    In 2012 with T3 only my thyroid did no longer enlarge.

    There are always three sorts of thyroid antibodies present, but because these are within the RR, no one ever payed attention. Only the nuclear physician who did the scintigram in Sept 2103 spoke of a "not otherwise specified thyroiditis”..

    I improved ferritin, mineral and vitamin levels, too, but nevertheless wasn’t able to increase the thyroid hormone intake due to tachycardias and arrhythmias.

    Finally, because EVERY doctor stresses my T3 only medication and the “suppressed” TSH (but TSH is suppresses since years), I lately gave in and I’m changing to T4 with some T3 added. This month I take T4 37 mcg + T3 2x 6mcg.

    Temp is low. Measured according to Dr. Rind (average of 3 values each) 97.8 – 97.6 – 97.9. The first two measurements are lowest, 96.6 or 97.1, the last is about 98.5.

    There is definitively room for improvement regarding my thyroid: I really hope that this time I will be able to increase sufficiently to finally get improvement of symptoms.

    It is really difficult to see through all this.

    Should an insulin tolerance test (gold standard) be performed? This would be very difficult to enforce.

    On April 2 I will have the MRI scan pituitary.

    I would like to repeat that I was rather healthy until the cesarean delivery of my second child. Thereafter, I struggled with lack of energy and some hormonal problems. The final and permanent decline happened six weeks after a faulty amalgam removal. Today I know that I have difficulties detoxing heavy metals (23andMe).

    Thank you very much for reading.

    Pearl
    Last edited: Mar 21, 2014
  8. Pearl

    Pearl

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    Hello

    I suppose that there is a reason, no one comments regarding my last post.

    Maybe, I have written too much or too confused?

    I write English for the first time in my life and without a dictionary I would be lost.

    At the moment my energy and especially my impetus (gear/push/stimulus) is nearly non existent and I have difficulties understanding things and thinking logically. I attribute this mainly to the change in my thyroid hormone supplementation lately.

    Nevertheless, I’ll try to ask more clearly.

    1 Interpretation of my CRH-tests

    Most of all I would like to get an opinion about the results of my CRH tests. It would be great relief to finish thinking about a possible disturbed HPA axis (pituitary/hypothalamus).

    The problem is, I’m newly diagnosed having an autoimmune illness, tissue in questions is collagen.
    The reasons for most autoimmune illnesses are not clear.
    But there are doctors who write that oftentimes the reason for an autoimmune illness is a real or a functional cortisol deficiency.

    Therefore I’m particularly interested to find out, if my lab results give an indication of a secondary cortisol deficiency/ HPA axis disturbance that would suggest supplementing some cortisol. Taking cortisol, thus, would be a causative therapy, whereas rheumatological medications are not.
    I want to avoid having to take basic rheumatological medications for the rest of my life.

    What about my ACTH in serum at the very low end of normal (RR) over years?
    What about the low morning serum cortisol?

    The rheumatologist cannot help with hormone issues and the endocrinologists don’t know anything about the immune system and most notably don’t explain anything. The endocrinologist wrote a short letter saying “everything is fine, the patient passed the tests”. They don’t provide any information on which criteria they base their interpretations. E.g. no one ever said: the cortisol should increase at the 60 min mark x times from the starting value. I don’t trust, what the endocrinologists say. When I research the web, I find different criteria regarding ACTH and CRH tests.

    CRH test from Sept 2012

    ACTH at the beginning was below the lower limit of RR, then increased about 5 times at the 30 min mark, then dropped half from that at the 60 min mark.
    Cortisol was normal at the beginning and did nothing but increase marginally during 60 minutes.

    Recent CRH-test (I’m not sure if it was done, how it should: at 2PM (not in the morning), after traveling several hours and having “stress”)

    ACTH was at the low end of RR and did a bit more than double at the 30 min mark, then dropped far below the starting value at 60 min and 120 min.
    Cortisol at the beginning was just above the upper RR limit, increased somewhat at the 30 min mark, dropped a little at the 60 min mark and fell way below the staring value after 2 hrs (beginning 224.6 - end 14.78 µg/dl, RR beginning 23-194)

    2 Hydrocortisone with secondary adrenal insufficiency

    Does anyone know anything about what I read that HC only helps in about half of people with secondary adrenal insufficiency? Is there any explanation?

    3 Aldosterone

    For the nephrologist as well as the endocrinologist the only essential criteria is the quotient, the aldosterone-renin-quotient. As it is in the Reference Range, they say, there is no problem and they cannot say, why I need so much potassium.

    My questions is: Is it correct to assume that aldosterone has an explanatory power on its own? My aldosterone was elevated several times to some degree, e.g. 230 (upper limit 145), 174 (upper limit 150), 236 (upper limit 160) and I suppose that it may explain my high potassium need though the quotient is normal?

    Finally, from what I read from other people on the forum, I cannot start methylation before the hormonal issues are dealt with?

    Pearl
  9. Ema

    Ema Senior Member

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    Midwest USA
    Pearl,

    I think the reason you haven't gotten very many comments is because your situation is so complicated (as you know). It's beyond the scope of the forum for the most part.

    I think the only thing you can do is try to keep finding a specialist that will commit to working with you on a complicated case. Unfortunately, this might be the 2nd, or the 10th, or the 200th doctor that you see. It's very difficult and you have my sympathies.

    I have not had CRH testing so I don't have much to offer on those results and whether or not they look as they should.

    Your ACTH test in 2011 looks about textbook perfect. Your serum cortisol results are for the most part indeterminate, with one result likely excluding adrenal insufficiency.

    I've never heard that HC is ineffective in half those with secondary adrenal insufficiency. Sometimes it can be more difficult to regulate the dose since the problem doesn't lie in the adrenals but elsewhere. I'd actually really like to see that reference and learn more about where they are coming from because I think it would be interesting.

    I do think it is interesting that your aldosterone is always high. But I don't know why that is or if the renin/aldosterone ratio is truly the only important factor.

    I think adding in some T4 to your T3 is a good idea. Obviously, T3 only isn't working for you despite suppressing your RT3. I don't think RT3 means what a lot of people think it means. And I think that T4 does have important functions as well. Hopefully that will improve your thyroid levels.

    I think you've done a great job writing about your testing and symptoms in English. I'm very impressed and hopeful that you can find someone to work with you further. I'm sorry that I couldn't provide more insight.

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