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Two major test results.

Discussion in 'Gastrointestinal and Urinary' started by ratdog, Sep 24, 2012.

  1. ratdog

    ratdog

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    I went to see np yesterday, and learned a lot. A new blood test, that predicts you have Crohns, came back positive. Makes good sense to me, with all the gastro problems I have. Another blood test showed my body has a major overgrowth of Candidia. So I am supposed to follow a strict diet to kill it and take Lamisil tabes once a day for 90 days. Blood Pressure still up. Moderate to severe joint pain mostly from lower back, hips, knees. I get really tired fast from doing very little. I have a hard time sleeping unless I take something, and my boss appears not to have a clue why I am still out of work after 3 month. That really bothers me mentally. Other conditions, hypothyroidism, I take Levothyroxine each morning. Hypodonadism or low T, I self inject very low dose once every 5 days to keep me more level. Lots of stress/anxiety, worrying about $$$, bills, and I stay tired all the time. I feel tired even when I wake up in the morning. I ask my np if she thinks I will ever get back well enough to work, I do retail and stand most of the day, but to be honest it hurts to stand, sit, or lay down most of the time. She said if all goes well 6 to 8 weeks. I was started on Savella starter pack, and Butrans 20mcg patch this week. I the last 2 days I have noticed a lot less pain, but no energy improvement. I am supposed to be taking Provigil 200mg each morning when I get out of bed, but so far insurance will not agree to fill it. The generic of Provigil is $900.00 for 30 days. She said she is not willing to say I have Fibro or CFS yet, but from what I have read Savella is a drug made to treat fibro. Since I am noticing a major improvement at times with Savella, does that confirm fibro? I was sent to hospital taday for more labs, CBC, Complete Metabolic Panel, Transfurrin Saturation, Serum Ferritin, FSH, LH, Total and Free Testosterone, and a 24 hour urine iron catch. She said she wants to rule out Hemochromatosis. What is your opinion of all this? Thanks
     
  2. rlc

    rlc Senior Member

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    Hi ratdog, because the gene tests only predict the possibility that someone can develop Crohn’s disease, you are going to have to have a lot more tests to confirm or deny this, but the tests certainly should be done, tests used for Crohn’s are here see http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=tests-and-diagnosis

    Crohn’s often causes a high ESR result because it causes inflammation, you say yours is low, so you will need further testing. See http://www.ehow.com/about_5163137_esr-crohns-disease.html

    Crohn’s can cause B12 deficiency ,so make sure that B12 has been tested, a lot of doctors believe that you can tests for B12 deficiencies with the CBC test, because advanced B12 deficiencies cause changes in the blood, However people can be very sick with B12 deficiencies long before the changes in the blood happen, so the actual B12 test has to be done.

    If you haven’t been tested for Celiac this should be done as it causes similar symptoms to Crohn’s.

    The Candidia should be treated and it may help you to do this, but I doubt that it is the cause of all your problems.

    It’s great that your Doc is finally checking for Hemochromatosis it is a very good fit with your symptoms it cause’s all of your symptoms and can cause Hypogonadism, damage your adrenals which would explain your failed ACTH stimulation test, can damage the Thyroid and the pituitary which would explain your other test results, it’s very treatable so let’s hope the tests come back positive.

    Have you been tested for Vitamin D deficiency this is a common cause of Fibro like symptoms such as muscle pain and weakness and fatigue.

    You should also get your doctor to retest your thyroid results if they haven’t recently, it is possible that you are not being given the right amount of medication as Hypothyroidism can change over time and the medication has to be adjusted.

    Your Doctor is very right to not give you a diagnosis of CFS or fibro at the present time, the large amount of tests that you have failed prove that you have some other medical condition which when found could be very treatable, giving you a CFS diagnosis and stopping looking for the other many possible causes of your failed serious test results now would be totally negligent. So they are right to be doing more testing. Savella is a drug that is used to treat chronic pain and is used in fibro, but just because it is improving your symptoms does not mean that fibro is the cause of your pain, neither Fibro or CFS cause the failed serious test results you have, so there is obviously something else serious going on.

    If these current tests and tests for Vitamin D, B12 and celiac don’t find the cause, the most important things to find the cause of is your failed ACTH stimulation test, and your LH and FSH these are very important tests that indicate a major problem that needs diagnosing.

    Hang in there ratdog unfortunately you have to wait while all the right tests are done but because you have failed so many important tests you stand a good chance of getting a correct diagnosis that may be very treatable and you have a reasonable chance of getting better, but to tests someone for all the possibilities that can cause your failed results can take a bit of time.

    All the best
     
  3. Ema

    Ema Senior Member

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    Did you share your failed ACTH stim test with the NP? Nothing is going to work right in my opinion until you are properly medicated for adrenal insufficiency. It is palliative to treat the symptoms with other medications but sets you up for further problems down the road if the root causes are left untreated. Again, adrenal insufficiency is life threatening if not properly treated. This is absolutely crucial in my opinion and I am very worried for you.

    Many times subclinical hypothyroidism can produce muscle and joint pain symptoms that can be given the label of fibromyalgia. With adrenal insufficiency, it is almost guaranteed that your T4 is converting primarily to RT3 (the inactive thyroid hormone) and leaving you functionally hypo. Turning down your metabolism is a last ditch effort by your brain to save your life as it does not have the cortisol necessary for proper functioning.

    If you are taking T4 only, I would encourage you again to look at your free thyroid hormone levels, FT3 and FT4 and make sure that they are optimal in the ranges. Often times, poor conversion of T4 to the active hormone T3 can contribute to lingering fibromyalgia pain that can be corrected by adjusting the thyroid dose or adding in additional T3. I would at least want to explore this option prior to starting on meds that treat only symptoms. Of course, none of this will work without getting the adrenal insufficiency sorted first.
     
  4. ratdog

    ratdog

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    Thank you Ric and Ema for once again all your good advice I will try to answer a few of your questions with a lab result that I have not posted before. Ema, I still take 10mg of hydrocortisone at 8AM and 5mg at 2PM. I never really saw a major improvement that I could really "feel" with hydrocortisone. I can take up to 30mg per day if I choose, but I honestly think the higher dose just made my blood pressure go up even higher. There were several times when I became tired or emotionally upset that I added an extra 5mg of hydrocortisose, and then crashed on the couch or went to bed. Here are some lab tests.
    Candida Antibodies IgG score 107 u/ml range 0-29
    Candida Antibodies IgM score <10 u/ml range 0-9
    Candida Antibodies IgA score 18 u/ml range 0-9
    TTG/DGP Screen result Negative
    Saccharomyces Cerevisiae, IGG result 35.6 units range 0-24.9
    All of the above labs completed last week
    TEST RESULT UNIT REF. RANGE
    TSH 0.811 uIU/ml 0.490-4.670
    FT1 2.49 1.70-4.70
    T4 6.56 ug/dl 4.50-12.00
    T3 UPTAKE 37.90 % 25.00-38.00
    FT4 1.19 ng/dl 0.69-1.76
    IMHPTH 37.20 pg/ml 7.50-53.50
    TRIIODOTHYRONINE,FREE,SERUM=RESULT 3.3 UNITS PG/ML RANGE 2.0-4.4
    COMPLETED IN THE LAST 90 DAYS
    LAST ENDO I SAW FOR TWO VISITS, HE SAW MY CORTROSYN STIM TEST RESULTS,
    THEY WERE 8.5 AT 8AM BEFORE INJECTION AND 12.7 ONE HOUR LATER. HE SAID I WAS LOW NORMAL AND REALLY DID NOT THINK I NEEDED HYDROCORTISONE AT ALL.
    TWO WEEKS AGO I HAD A N MRI OF THE BRAIN DONE WITH AND WITHOUT CONTRAST. NO PROBLEMS WERE FOUND IN THE AREA OF THE PITUITARY. ULTRASOUND TWO MONTHS AGO SHOWED BOTH ADRENALS NORMAL SIZE WITH NO PROBLEMS. ONLY ISSUE SPOTTED SO FAR WAS A CYST ON RIGHT KIDNEY. KIDNEY SPECIALIST AT BAPTIST HOSPITAL SAID THE CYST WAS NOT A PROBLEM. MY RENIN LEVELS STAY HIGH, AND I STILL TAKE FIVE BLOOD PRESSURE PILLS PER DAY. THATS JUST THE BIG STUFF FOR NOW. THANKS FOR READING AND TRYING TO HELP ME.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    Its good that they arent jumping to fast diagnoses and wanting to try first some things fixed. Candida does cause some big issues. Best luck with treating it.
     
    Sherlock likes this.
  6. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Amen to that. I'd say that since suppressing candida, I no longer have the Fatigue of CFS. Still, have temp dysregulation, raw throat, insomnia etc but those poisoned effects aren't here anymore. More like IDS than CFS now.
     
  7. xks201

    xks201 Senior Member

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    I don't see how candida could survive if your digestive system is functioning properly. Low cortisol could lead to low hydrochloric acid. I would guess digestive enzymes could help in small amounts. Perhaps look into mineral balance?
     
  8. ratdog

    ratdog

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    Thanks for all the helpful input. I got some very stange lab results in today.
    Luteinizing Hormone Result <0.1 Flagged Low Units IU/L Range 1.7-8.6
    FSH Serum Result 0.3 Flagged Low Units IU/L Range 1.5-12.4
    Testosterone Serum Result 743 Unitsng/dl Range 300-890
    I inject .375ml of Testosterone Cyp 200 MG/ML once every five days in the glutes
    The blood draw was done on day four, the Dr that prescibed the test/cyp said this dose was not high enough to shut down my own Luteinizing Hormone or shut down my FSH serum
    My MRI of brain 2 weeks ago showed nothing abnormal
    But still I am Hypothyroid, Hypogonadal, Low cortisol production, and tested positive by blood test for Crohns, my sister also has Crohns.
    My NP suspected Hemochromatosis, but these new lab results today may rule that out.
    Transferrin Serum, Result 287, Units mg/dl Range 200-400
    Ferritan, Result 38, Units ng/ml Range 17.9-464
    WBC was on lower end of ok, Result 5.6 Range 4.0-10.8
    RBC was on lower end of ok, result 4.84 Range 4.60-6.10
    Any ideas on these new results?
     
  9. rlc

    rlc Senior Member

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    Hi ratdog, your Ferritin result more than likely rules out Hemochromatosis, but the most accurate test for it is transferrin saturation which you don’t seem to have had done, if your doctor is correct that the testosterone injections at that time will not have affected the LH and FSH results,then the results are serious and need further investigation, it may be a Pituitary problem. A normal MRI does not rule out a pituitary problem you can have pituitary problems that don’t cause visible structural damage. Make sure that they have checked your Hypothalamus as well. You say that your adrenals were checked by ultrasound this is not the tests for looking for structural damage to the adrenals it is not accurate enough. They should be checked by MRI or CT.

    All of your test results low LH, FSH, cortisol and failed ACTH stimulation test plus hypogonadism and hypothyroid are all serious endocrine problems. But your endo has implied that they are not, I recommend that you get another opinion from a better endo you results and symptoms point to many serious endocrine problems and you need someone who is going to take the time to find out which one it is, your test results are not caused by CFS.

    Because your results point to quite a few possible causes of them I can’t say which one is the cause, all I can say is they are all serious Endocrine results and you need to find a good endo to work it out for you, many of the possible causes of these test results are very treatable!!

    Hope this helps

    All the best
     
    Ema likes this.
  10. Ema

    Ema Senior Member

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    I agree with rlc.

    Who is prescribing the testosterone injections? Can you get that doctor to look at your failed ACTH stim test and other abnormal endocrine function tests? Or recommend an endocrinologist that can get you proper treatment?

    If you need medical documentation to give to the doctor from the literature proving your abnormal results, please check in with the Addison's group I suggested earlier. They help people educate doctors to get appropriate diagnoses all the time.
     
  11. ratdog

    ratdog

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    Ric and Ema, thanks again, Ema the endo that prescribed the testosterone injections was my first one. She is the one that did the Cort. Stim test. Her notes said low normal starting cortisol levels at 8AM, but failure to rise enough. She diagnosed me "Mild Adrenal Insuff" and put me on 5mg of Prednisone per day. This did nothing at all for me but help my knee aches a little. Second endo started me on hydrocortisone, 20mg per day, them upped it to 30mg per day after I complained I felt no better. He is the one that said in his opinion I really did not need hydrocortisone at all, that I was low normal. I have had almost every MRI, MRA, CT you can think of, and lots more tests than I have posted. Ema, I got your private msge. Thanks. He site seems to be well above my understanding. I want help, I need help, I live near Charlotte NC and have yet to find an "Adrenal Specialist" Any tests you think I need to have, please tell me, I may already have had it and not posted it. I am nearing the end of my rope, I am sick of feeling rotten all the time, and causing my wife and daughter to do without. If you know of an adrenal specialist near me, send me a PM, for some reason all endo's say they can treat adrenal issues, but really lack the experience. Here in the US I can collect no $$$ assistance unless I am out of work one year and a dr rules me disabled. That is not my wish. I would rather be well. We need help now, not in a year. Thanks Again.
     
  12. Ema

    Ema Senior Member

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    I promise you that Dusty helps beginners all the time. She is very kind and I truly believe she could be a resource for you. Please email her! She will help get you on the right path. You don't have anything to lose...
     
  13. ratdog

    ratdog

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    Ema, have you been on her site in a while, I see no way to contact her or join her forum. It redirects me to another site with only two posts
     
  14. Ema

    Ema Senior Member

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    I am on there all the time so I am already signed in so I can't see what the options are...but I will PM you with her email and she can send you an invitation. I already told her to look for you just in case you decided to join.
     
  15. rlc

    rlc Senior Member

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    Hi ratdog, if you can give me a bit more information I’d like to start at the beginning, because it is unusual for anyone to have two serious conditions at once so the worsen of health you have been feeling is probably related to what started at the beginning, you say years back your sex drive was low and your doctor started giving you Testosterone injections.

    Do you know what tests they gave you before giving the testosterone injections, did they just test testosterone or did they test LH, FSH and other endocrine hormones as well, if you had any failed tests at that time let us know. Also has the Hypogonadism been present since you started the testosterone injections, or has it slowly progressed over time or is this a fairly recent symptom. Can you also let me know if you have any Hyperpigmentation like a sun tan that doesn’t fade or increased pigmentation where clothes/shoes rub against your skin or in your mouth or in any scars, knowing the answer to this question rules out a lot of diseases so I won’t have to consider them as possibilities.

    Although your scans say that your pituitary is fine and I would imagine your Hypothalamus looks fine as well, this test only shows structural damage. Both can be not working properly and look perfect on a scan.

    Your LH and FSH results indicate that your pituitary isn’t working properly this can cause the adrenals to not work properly as well even though they look fine on scans. The pituitary produces a hormone called ACTH, they use a synthetic version of this in the ACTH stimulation tests, ACTH is the messenger from the pituitary to the adrenals that tells it to produce Cortisol. Have you ever had the serum ACTH tests done?? If not it needs to be done.

    Hypogonadism can be caused by a lot of things see http://en.diagnosispro.com/differential_diagnosis-for/hypogonadism-male-causes/10903-154.html so there is an exceedingly good chance that one of these conditions on the list is the cause of all your problems, initially this list of 70 conditions may seem very daunting but a lot of them you can’t possibly have because they are present from early in life, or are caused by surgery, many are problems with the actual testes but you have probably had them ruled out and problems with the testes don’t cause low cortisol. So apart from a very few exceptions almost all of the remaining causes are problems with the pituitary gland, we already know that your pituitary gland isn’t working properly because of the low LH and FSH, but there are other hormones produced in the pituitary that can be tested, you need serum ACTH test, human growth hormone and Prolactin tested as well, these tests are explained here http://www.enotes.com/pituitary-hormone-tests-reference/pituitary-hormone-tests

    These results will show to what extent either your pituitary isn’t working or because the hypothalamus sends the initial messages to the pituitary to work your hypothalamus isn’t working.

    Low levels of these hormones can be treated, but like I say you need a good endo to work this out and to rule out any of the other possible causes of Hypogondism. But my feeling is that because your LH, FSH and TSH are all malfunctioning and they are pituitary hormones, and the pituitary sends the message to your adrenals to work and produce adequate cortisol and your cortisol is low, and numerous pituitary problems cause hypogonadism as well as the other symptoms you are experiencing, your problems are most likely caused either by your pituitary gland or your hypothalamus, because the hypothalamus produces the hormones that make the pituitary gland work.

    It sounds like your various doctors have been treating symptoms rather than finding the cause, low libido and testosterones are symptoms not a diagnosis and the cause should have been found not just give you testosterone injections, low cortisol and failed ACTH stimulation tests are symptoms, they should have looked for the cause not just given you prednisone. My feeling is that the cause of your suffering can be found and it will most likely be something to do with your pituitary.

    But you need a good endo to do this, I don’t live in the states so I can’t recommend anyone, but on this site it recommends what they consider to be the best pituitary doctors in the US, There is a Dr Matthew Ewend in Chapel Hill NC phone 27599-7060 see https://www.pituitary.org/medicalresources/physicians.aspx?country=United States

    Who I would imagine could sort out your problems.

    Hope this helps

    All the best
     
  16. xks201

    xks201 Senior Member

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    I am similar to you in hormone problems. Basically the brain doesn't signal any of the hormone system right in my case. My RBCs also do not appear to raise like they should on testosterone (at least since I've checked them last). What exactly are your present symptoms? What kind of thyroid and cortisol treatment are you on?
     
  17. ratdog

    ratdog

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    Thanks for your interest. I have to ask, it that pic for your profile really you?
    You have got some incredible arms. Ok, to answer you question, I take 75mcg og Synthroid every morning about 6AM. I wait at leat 1 hour before taking any more meds, or eating or drinking. I have split my test. injections up myself, and self inject once every 5 days, using .375ml of test cyp at 200mg per ml strength. At the docs office, they would take 2 weeks of that and shoot me up once every 2 weeks, so right after the shot my test levels would go up to 1500-1600, then before the 2 weeks were over, I would really feel tired, and my test. level would be 58. It was a fly, crash, burn, every 2 weeks. I am not nearly as fit looking as you, but people do notice my muscle mass, and ask how, I used to work out 3 days a week. Now I am always exhausted, neck, shoulders, lower back, hips, knees, hurt all the time. My bp is out of control, and I take bp meds 5 times a day. Right now I take 10 mg hydrocortisone in the morning and 5mg in the afternoon. I feel no change from that dose. I was allowed to try taking 30mg hydrocortisone per day, it made me shakey, uptight, and bp went up even more. I have mild to major ed, she likes it better if I take a blue pill. I hurt so badly, sitting hurts, standing hurts, and so on. I am feeling my best when I am sitting in super hot water in the tub. One dr once told me, you are just suffering from depression. I told that idiot was he not aware that real depressed people had high levels of cortisol in their bloodstream, and mine is low or considered "mildly adrenal insuff." You my know more about this, but 2 docs so far have commented that the reason my LH and fsh hormone were really low all the time was because my T injections were telling my pituitary to shut that off. In the mean time, it's month number four, no work, and have hernia repair surgery and colonoscopy to cram in by years end. Have a good day. Forgot to mention, ACTH levels in lower range of normal. Also, 12 yrs ago, LH and fsh were fine, before the test injections started. T was 148 before injections started. Gels and creams did not work, even Androgel 1.62%
     
  18. ratdog

    ratdog

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    Hi Everyone,
    It's been a long four months. Two hernia's repaired, colonoscopy w/biopsys, and more med adjustments, with hydrocortisone or prednisone not helping at all. My gastro dr referred me to an endo in Charlotte NC that knows about adrenals. He took me off my 10mg per day of hydrocort. (I was supposed to be taking 30, but never saw any improvement in my fatigue, lack of energy, malaise, depression, cold chills, night sweats, so I have been cutting back on my own. My GP says she believes I have fibro/cfs, but ask asked to go to a real adrenal dr for one last opinion. He was a staff DR at CMC and finished school in 1989. He was very concerned/upset that I was on such a long list of meds. So I got to explain what the all were for. I got up at 5AM, showered, dressed, and hit I77 south in rush hour traffic, only got caught in on jam. Made it in the building by 7:45AM Nurse took me back at 8:30AM for blood draw for cortisol, blood drawn at 8:31AM for Renin, Plasma and at 8:32AM Aldosterone Serum, 8:33AM blood draw for ACTH
    Some during all this I was given an injection of 0.25mg Cortrosyn, and at half hour interval the cortisol level was checked
    8:30AM Pre-Cortrosyn injection Cortisol was 10.0 ug/dl
    8:31AM Renin/Plasma was o.53
    8:32AM Aldosteron serum 5.8
    8.33AM ACTH 44.5
    These last two numbers should be post cortrosyn injection
    8:52AM Cortisol 18.7 ug/dl
    9:21am Cortisol 22.2 ug/dl
    The Dr. Douglas Robinson left off the ref. ranges on the reports,
    His final comment was "It looks as if your adrenals are fine. Do I accept that even though 2 other endos said I was mildly deficient, or does CFS and Fibro looks so much like adrenal dysfuntion its too hard to say?
     
  19. Ema

    Ema Senior Member

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    How long were you off the steroids before this?

    Ranges would be helpful but it is safe to say (provided you were off steroids for at least two weeks) that this is a failed stim test. Wikipedia is not my favorite but summarizes nicely. There are plenty of studies to support the interpretation.

    In healthy individuals, the cortisol level should double from a baseline of 20-30 µg/dl within 60 minutes. For example, if the serum cortisol level was 25 ug/dl before the stimulation, it should reach at least 50 µg/dl.

    "Interpretation for primary adrenal insufficiency and Addison's disease
    The baseline cortisol level in people with adrenal insufficiency is usually near 15 µg/dl. An ACTH stimulation test that raises the cortisol concentration to 20 µg/dl would support the diagnosis of primary adrenal insufficiency."

    Beyond that, stress (like from a traffic jam) can artificially increase cortisol so your levels may have been even lower.

    Aldosterone should be tester after salt fasting for 24 hours. However, your result is dreadful. Did they run electrolytes as they should have along with it? I bet your sodium is very low and that alone can make you feel weak and shaky.

    Ratdog, I hope you can find a doctor that understands adrenals. The ones you are seeing may kill you.
     
  20. ratdog

    ratdog

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    Hi Ema,
    Thanks for your fast reply. When the dr called and told me my labs looked good and it appeared I had no problem with my adrenals, and he offered to mail me a copy of my results, I said yes, thank you. First time I have ever received copies of labs that had the acceptable range of each test blank. I did a little research, and found the article on Wikipedia you pointed out. When I mentioned what I found to a friend, she said "Do not believe everything you read on that site, anyone can post info there" I tried to find same info on other sites and could not. I am going to call Monday and ask for the ranges of each test. I am so upset and confused. I am out of ideas and money, and need to be working, but anything stressful sucks every drop of energy out of me, mental, emotional, or physical. At one point, I was taking 30mg of hydrocortisone per day. I never noticed an improvement. If I became overly tired, I almost always get chills, shakes, and sweats, and that is with or without hydrocortisone. One thing has improved since stopping hydrocortisone completely, my BP is in normal ranges again with the 5 bp pills I take, readings like 116/72 where with hydrocortisone in my system, normal bp readings on the meds were 146/89 We have a Labcorp blood testing group here in town, 5 minutes from home. Wonder if my NP would consider sending me there for retests, or do you think it is needed? Ema, I researched symptoms of Fibro/Cfs for a while, and a lot of those apply to me, and some say borderline low cortisol is a symptom of fibro/cfs. What are your thoughts?
     

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