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Message for Ric, Ema, and Marlene

Discussion in 'Hormones' started by ratdog, Sep 5, 2012.

  1. ratdog

    ratdog

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    North Carolina
    I have been going thru all my recent endo visit labs, thinking more about what you all said. On June 10th at 8AM I had these labs drawn
    Renin Activity=17.1 ng/ml/hr=range adult upright 0.5-4.0 ng/ml/hr
    Aldosterone=14.5 ng/dl=range 4.0-31 ng/dl
    Bilirubin=1.8mg/dl=range 0.2-1.3
    MCH=33.5pg=range 27-31
    ATCH(PLASMA)=27pg/ml=range7-69
    ****FSH(serum) 0.5 IU/L=range 1.5-12.4****
    ****LUTEINIZING HORMONE=<0.1 IU/L range 1.7-8.6
    He said the FSH and LH were really ok, results were due to testosterone injections
    Then again on July 2nd at 11:40am I had these labs drawn
    IGF-1 195 ng/ml range 66-296
    Renin Activity 24.9 ng/ml/hr
    Aldosterone 10.2 ng/dl
    Rolling time back a few months, a ct scan of lower torso showed a "scar" on right kidney. 2.5 weeks later something called an MRA of the renal arteries showed a 15mm cyst or mass on right kidney, (since the renin and blood pressure continued to increase, and pheo tests showed nothing, an ultrasound was ordered 2 weeks later of both kidneys) Right kidney showed a 1.2cm x 1.9cm cyst or mass and a "cystic structure in right calix" I was referred to a urologist, he looked at the ct's, mra's, ultrasound and said it looked like normal cysts to him, not to worry, he also did a prostate exam. He noted a 2mm "something" inside the colon. He suggested a colonoscopy, I have not got that lined up yet. I feel so drained, and very worried, so I ask for a referral to a specialist. He sent me to Dr. Hamal in Winston Salem. He said he looked at films, and I had cyst. Not to worry, check on it once a year. He spent less than 5 minutes with me. He said the cysts had nothing to do with how I felt. My GP here in town has agreed to have the kidney checked via ultrasound again on October 30, to check for changes. I have had most every blood test you could imagine. My blood pressure is still midline high with 5 meds per day to keep it down. I really think the hydrocortisone makes it go up, but I promise I will take at least 20mg per day since you think it is needed. I cannot take flornif, that will really make my bp high.
  2. Ema

    Ema Senior Member

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    Midwest USA
    I will look at this more when I get home this evening but right off the bat, your renin is screaming high. Did any doctor have an explanation for that?

    High renin indicates an overly active renin-angiotensin-aldosterone system and that is most likely the root cause of your high blood pressure. I would be trying to find the source of the high renin and fix that rather than trying to interfere with the system with 5 different meds to control blood pressure.

    When did you last have your electrolytes done (CMP)? Were these labs all done fasting?
  3. ratdog

    ratdog

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    North Carolina
    Ema, the first group of test results were done fasting, at 8AM, The labs drawn on July 2nd at 11:20AM were non-fasting, I had no idea he was ordering labs, when I questioned him why was the renin so far out of range, he said, nothing to be concerned about, he said your meds for high BP were doing that along with a diuretic. We both know he is wrong on that. He also was the endo that upped my hydrocortisone dose from 20mg to 30mg after I told him I felt no energy improvement from 20mg, he then told me he really did not think I needed hydrocortisone at all, that my cortisol levels fell in the "low normal" range, but I insisted. So he wrote the script for 30mg per day, to let me "see" that would have no effect on my energy levels because he said in his opinion "I really do not think you need it" Then he said with his mouth and wrote a paper script for me to take to drug store, Take one 10mg tablet every 8 hours. We both know that is not how to dose it. I believed, just as you do that something is making my renin to high. That is why I insisted on going to the kidney specialist in Winston Salem, Dr Hamal. I told his nurse before he came in the room I feared the "cysts" as they called them in my kidneys were producing renin, and I wanted them out. The docter spent 3 to 5 minutes in the room and assured me the "cysts" in my kidney was harmless.
  4. Ema

    Ema Senior Member

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    Midwest USA
    This is interesting about kidney cysts and infection:

    http://www.drmirkin.com/morehealth/G152.htm

    Do kidney cysts typically produce renin? I can't find much evidence of this online but maybe am not looking in the right places. I don't have kidney cysts (knock wood!) and so I am just musing through this with you.

    From a quick search, it appears that kidney cysts are classified as simple or complex and that this is relatively easy to distinguish upon imaging. Now what this all has to do with whether or not they are producing renin is a question I can't answer. But it may explain why he was so quick to dismiss them based on the films.

    A high renin level is consistent with primary Addison's disease. Typically this would manifest with low aldosterone levels though and yours are just low-normal. However, I do wonder if Florinef would lower your renin level (people with Addison's often use high renin as a sign to increase Florinef) and thus end up lowering your blood pressure via the feedback mechanism.

    High blood pressure can also be a result of hypothyroidism. Are you taking statins? These can prevent T4 to T3 conversion and make hypothyroidism worse. Also, they can deplete CoQ10 which can contribute to symptoms.

    The high bilirubin is concerning to me as well. Have you been tested for hepatitis? Gilbert's syndrome? Any signs of jaundice? It's also possible that this is a sign of hypothyroidism. Apparently, bilirubin is broken down mainly by the glucoronidation pathway which may be faulty in cases of hypothyroidism. An organic acids test like the one from Metametrix often measures this pathway. This might be something for you to consider.

    High MCH can also be from hypothyroidism...or B12/folate deficiency.

    You really need some better doctors. But the good news is that you know that something is wrong and now are in a position to do a LOT of research and start questioning doctors until you find the ones that show a healthy curiosity and a degree of rigor when studying your case. You may go through a dozen doctors until you find the "right" ones. It's an unfortunate reality of our medical system. You will have to be your best advocate and understand your labs and symptoms better than anyone else. You are the only one that cares that much and really has all the information.

    If it were me, I would try to start putting together a plan of attack that includes a history with all of your abnormal test results and list of meds and start making appointments. A GP or an internist may not be a bad first step particularly if they come from a functional medicine perspective. You need to find ONE doctor to become curious and want to help you. Then they can start calling their doctor friends for consults and get the ball rolling. Doctors tend to take referrals much more seriously from their peers.

    In the meanwhile, the Addison's is a given based on your AM cortisol and failed stim test. If it were me, I would call it a given whenever discussing it with medical professionals moving forward. If you say that you have Addison's (and back it up with your labs), it will be just one less hurdle in your treatment. Stop wondering if you have it and find someone who will help you treat it!

    I would dose 20 mg as 10 upon waking, and then 5 around noon and 5 around 5PM. I would dose 25 mg as 10, 7.5, 5, 2.5 every 3-4 hours. I would dose 30 mg as 10, 10, 5, 5. The last dose can be taken at bedtime. If you are getting adrenaline rushes or anxiety, that is a sign of not enough cortisol.

    Do you have a BP monitor at home? If not, I would get one.

    Do you know how to order your own labs through econolabs.com or the like? I would also investigate this as a CMP is about $25 and you need to know the status of your electrolytes. Also, I would order a thyroid panel consisting of FT4, FT3, and RT3 if you haven't done that already.

    The good news is that it doesn't look like ME/CFS is likely your problem...you have a long road ahead of you but you are asking the right kinds of questions.

    Ema
  5. Ema

    Ema Senior Member

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    Midwest USA
  6. rlc

    rlc Senior Member

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    Hi ratdog, must say I’m not very impressed with your doctors! The very high Renin fits with having primary Addison’s as well as your low Cortisol and failed ACTH stimulation tests. Has anyone checked sodium and potassium?

    When you get a new Endo get them to have your CT results reviewed and see if there is any visible damage to your adrenal glands.

    Are you still taking Testosterone injections? If your doctor has managed to screw up your LH and FSH levels that much with testosterone injections they don’t know what they are doing. LH and TSH are made in the pituitary and problems with the pituitary can cause secondary Addison’s so it might be a good idea to get a MRI or CT of your head to check the Pituitary and hypothalamus. It might not be the Testosterone injections that are causing the LH and FSH results.

    My feeling is you almost certainly have Addison’s based on your test results, but nobody has investigated which of the many options is the cause of it. This needs to be done
    .
    So my feelings are you need a new endo who knows what they are doing. They should be able to find the cause of all your failed endocrine results and then treat you properly! The kidney cyst may just be a kidney cyst they are common and usually harmless, but it may be worth getting a second opinion from a nephrologists who is prepared to spend more than 5 minutes with you, there are many causes of kidney cysts see http://symptoms.rightdiagnosis.com/cosymptoms/kidney-cysts-all.htm the adrenals are just above the kidneys so there may be a relation between the two problems. I would certainly be wanting this 2mm something in your colon investigated to find out what that is.

    Seeing as your docs have been giving you Testosterone injections with what looks like terrible effects, you are on meds for blood pressure, a diuretic and hydrocortisone the impression I’m getting is that your docs have been throwing meds at symptoms before finding the cause of the symptoms it would be a good idea to see if you are suffering from any harmful interactions from your meds as well. On this page http://www.drugs.com/drug_interactions.html follow the instructions and enter the names of all the drugs you are on it will tell you if there are any bad interactions between the drugs you are on and what these are.

    Hang in there ratdog, I know it is very hard having to do all this, when your docs should have done it for you. But I feel if you can get to a good endo they should be able to sort it all out for you.

    Hope this helps

    All the best
  7. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    She said in her post that "EBV AB VCA, IGG >8.0 Flagged as strong positive". EBV could be causing the high bilirubin. Ive had high bilirubin (early ME) probably due to reactiving EBV.

    What's that disease called in which one gets both hypothyriodism as well as cortisol issues.. (starts with an "S" I think). She said she was also diagnosed with hypothyriodism.. so if the cortisol is an issue too.. possibly she has that "S" disease thing. But then that wouldnt explain the EBV (which would more so point to ME and the subgroup of it which also has hypothyriodism and issues also associated with that, so ties in with that other disease I cant currently think of what its called.

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