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Dosage question for AI deficiency.

Discussion in 'Adrenal Dysfunction' started by Misfit Toy, Feb 25, 2018.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I turned to FB to help regarding the adrenals. I am getting way too many answers that are all over the place. I need guidance.

    I have dealt with adrenal issues for a long time but since having my thyroid removed, they have crashed. Last summer, I had knees buckling, syncope..I mean, it was awful.

    No adrenal supplements have ever helped me. I quit them. They all suck.

    Epidurals helped this every time. This last time, I had an epidural and within weeks of feeling hyped, energetic, etc...my adrenals totally crashed. I could barely get out of bed. Severe depression came on.

    Ad to it, my mom dying, the flu, a sinus infection and two periods in one month, you could say for sure, that my adrenals are fried. My knees are shaky, things are truly amiss.

    My doctor put me on 3 mg of Prednisone a day. I felt awful. Like awful.

    I went up to 5 mg but on FB, they are telling me, that is too low. I don't feel great on 5 either. I have been in bed all day. But, it's been better than the 3 mg.

    They are telling me on FB to go on between 7 and 8 mg of prednisone that 5 is too low. This is prednisone, not HC as HC makes me feel crazy.

    I am taking 2 mg when I wake up which is way too late. Then I am taking 2 in the afternoon and 1 mg at nighttime.

    Someone said to take it every 4 hours and another person said to take it every 8 hours. ???? Two different admins.

    My concern is, I don't want to mess my adrenals up even more, so if anyone has any advice, or knowledge, I would appreciate it.

    I have an apt with an adrenal specialist, but its not until April 28th which is too long. Welcome to city doctors. Sometimes 6 month waits.
     
  2. kangaSue

    kangaSue Senior Member

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    What's your bp like in response to taking a steroid? Some people with autonomic dysfunction have an opposite effect to them and it drops their bp. I'm like that, don't have a thyroid issue though. Have a normal response to a Synacthen Challemge test (ACTH).
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    I don't know as I don't have a blood pressure cuff. I just know that it's normally low. 90/54. Ever since I got sick, that's what it is.
     
  4. ebethc

    ebethc Senior Member

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    I generally agree, and hated prednisone... It took me a LONG time to recover from it...

    have you tried licorice in any form? licorice tea? it's gentle and I can handle it.. also, vitamin b5 helped... Not magic bullets, but gentle enough to be tolerable, and effective enough to help
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    @ebethc -hi! Like I said, no supplements have ever helped me. I think the reason is because you can't make something work with a stimulant like licorice if the adrenals are not working. If they are insufficient.

    I don't like prednisone, but....it works. It gets me out of bed. Supplements did squat.

    Were you on prednisone for AI? There is AI and then there are adrenals that are working but having a hard time..which do you have?

    I used to go to bed at 2:30 am. Now, it's 4:30 am.
     
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  6. kangaSue

    kangaSue Senior Member

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    Have you had a Heart Rate Variiability to Deep Breathing test done at all as a measure of your vagus nerve function in regards to both low bp and autonomic response. This can pick up cardiovagal dysfunction and Autonomic Neuropathy often goes with that when there is no known cardiac defect.
    http://www.vitalscan.com/dtr_ans.htm
     
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  7. Misfit Toy

    Misfit Toy Senior Member

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    These are great questions. I have not looked at your link, but who tests this? I have Sjogrens which affects the autonomic nervous system and causes neuropathy in my feet which could also affect other parts of my body. I have pins and needles in my hands at times.
     
  8. kangaSue

    kangaSue Senior Member

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    @Misfit Toy This test is more usually the domain of Neurologists but I think the vitalscan machines I linked too are also marketed to general medical practices. If you flick them an email, they might be able to direct to someone close by with a machine. Impaired motility often occurs from having cardiovagal dysfunction too so motility centres or Neurogastroenterologists can also do the testing for autonomic dysfunction.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543903/

    You would definitely want to have this test done in having Sjogren's as Autonomic Neuropathy is a common finding in this cohort and can include both cardiovagal and sudomotor dysfunction.
     
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  9. kangaSue

    kangaSue Senior Member

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    @Misfit Toy I just noticed in your tag line that you have suspected EDS. Have you ever had a Doppler Ultrasound of your mesentery arteries? People with EDS are way more susceptible to having one or more of the abdominal vascular compression conditions of SMA Syndrome, Median Arcuate Ligament Syndrome or renal Nutcracker Syndrome.

    All can cause mild to severe GI dysmotility but more importantly, are a cause of autonomic dysfunction too and some 20% of cases for all syndromes have marked POTS symptoms. Also, increased venous pressures from having Nutcracker Syndrome can be a cause of transient Addison's-like symptoms.
     
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  10. Misfit Toy

    Misfit Toy Senior Member

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    @kangaSue -yes. I see Dr. Anne Maitland in NYC. She is a MCAS specialist. I have POTS. She suspect that I have EDS. She is pretty sure of it. I have been told to go to a geneticist but have not wanted to as I keep being diagnosed with more things and I am very depressed. I have IC, Endometriosis, MCAS, Sjogrens, Fibro, CVID and Celiac with so many other things. The POTS came on suddenly and I have neuropathy in my feet.

    I live 2 hours from NYC and she wanted me to see someone up there but it is too far and I am too sick. I will speak with her next week to find out what to do for the neuropathy which I am sure has hit my brain.

    I am on prednisone at 4 mg for the AI-adrenals and for the sjogrens.

    I will read your link and I am so grateful for your perspective as I wander around wondering, what is happening. How can I sit up one day and be working, etc and the next day, I am like a different person, in bed, legs buckling, brain dead and adrenals feel exhausted. I feel that it has affected my adrenals and so does my rheumatologist. I lost my thyroid, too.

    A few years ago, I had so much brain fog and was so sick, I kept leaving the stove on. I mean, bad. I have left the door of my car open with a brand new Apple computer in it. I am so sad.
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    Kangasue, my BP is better on the prednisone. Much better. I am still reading the NIH info. Man, it's complicated. they are suggesting Mayo. Many had an awful time at Mayo. I am on a POTS forum. Mayo is too far from me.
     
  12. kangaSue

    kangaSue Senior Member

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    Yeah, that's as it should be and makes perfectly good sense where there is an autoimmune condition involved too. I've been extensively tested for autoimmune conditions but nothing turned up so the Autonomic Neuropathy just goes down as idiopathic.

    Mayo's just one of the options, you're spoiled for choices there in the US. Their only real point of difference is that if you have abnormal results in sudomotor tests (QSART and TST), they are one of very centres with an Autoimmune Dysautonomia blood test panel (DYS1 or GID1) that can test for ganglionic acetylcholine receptor antibodies (and I know a few people with EDS who have this too in having Autoimmune autonomic Ganglionopathy.
    I would imagine any University hospital with a Neurology or Motility Centre attached would have the dedicated facilities to run an Autonomic Function Test panel.
    There's a list of doctors that might be able to point to someone nearer to you here; http://www.dysautonomiainternational.org/page.php?ID=14
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @kangaSue -but here is a question....before I pursue this, is there anything that can be done for this?
     
  14. BadBadBear

    BadBadBear Senior Member

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    Are you taking thyroid meds? For me, T3 brings BP up better than anything.

    For some reason, thought elsewhere you mentioned not being on any? Wonder if they are more tolerable for you while on Pred? Sorry if I remembered this all wrong. ☺
     
  15. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I am on T3. It does nothing for my BP unfortunately. I have no thyroid so I have to be on thyroid meds. The prednisone is helping with BP, but not the T3.

    Are they more tolerable...maybe? My hormones are such a mess. I am on 67.5 of T3. I need to be on a little bit more.

    I am in perimeno so things are a bit of a mess.
     
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  16. soxfan

    soxfan Senior Member

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    @Misfit Toy ....I have struggled for 8 years with what I always believed were adrenal problems. The ongoing awful fatigue...terribly unrefreshing sleep...mental fatigue...on and on.
    I had been looking for a doctor who would take my symptoms seriously. I have Hypothyroidism so decided to try my endocrinologist ....BAD mistake as she did the morning serum cortisol (8.2 range 5-24) said I was fine. ACTH test crashed me.

    Since December I have basically been housebound as I am too tired to drive and would be unsafe. Just lots of stresses the past few months. I was seriously ready to just give up hope and I was miserable and crying everyday,

    I found a doctor through a website in my town who is a functional medicine doctor who specializes in these symptoms. She is a MD who couldn’t take the rat race of not spending time with patients.

    Anyway I saw her last week at her private clinic. She is amazing and spent a hour and half with me. Right away after looking at my cortisol test and actually Listening to my symptoms she recognized what was going on and said I am in stage 3 adrenal exhaustion but she actually calls it HPA dysfunction.

    If you want to message me I can give you more details of my treatment plan which is not complete yet till after she runs some tests next week.

    This is the first time I feel hopeful in about 8 years that I can at least feel somewhat better and not feel like the fatigue is going to kill me....

    I was on Cortef 20 mg for five years (2006-2011)
     
  17. kangaSue

    kangaSue Senior Member

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    If it's a vascular compression issue, there are surgical fixes for it but they are all fairly major operations.

    If it's something antibody related, things like Mestinon or the bigger guns of IVIG, Plasmapheresis or maybe even rituximab can be treatment options, just depends on the antibody involved.
     
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  18. kangaSue

    kangaSue Senior Member

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    I've noticed in a number of cases involving having Hyperthyroidism and dysautonomia issues that GAD65 antibody is one that comes up positive when someone thinks to test it.
     
  19. Misfit Toy

    Misfit Toy Senior Member

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    Oh hell to the no. I have CVID and IVIG is not for me. No thank you. And with CVID, Ritux would kill me. My lymphocytes are in the gutter. I have idiopathic lymphopenia, so you just answered my question. No meds, surgery for me. Enough.
     

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