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New doctor, finally on meds

Discussion in 'General Treatment' started by madietodd, Jul 25, 2013.

  1. madietodd

    madietodd Senior Member

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    Mine is oral.

    Sleep got bad again, grrr.
  2. madietodd

    madietodd Senior Member

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    So far my results are.......unexpected. The florinef made me sleepy all day and might be what made it suddenly very hard to get to sleep/get back to sleep. The gabapentin didn't help sleep at all, and might also have disturbed getting to sleep. The only one I'm still on is progesterone.

    Nothing has helped my sleep so far, but my daytime energy is much improved on 200mg progesterone at bedtime. I'm still very heat sensitive, but I got out at 7 this morning in 70 degree weather and cut back vines for 2 hours. I was mostly sitting, but still.

    I see my doctor tomorrow to figure out what to try next for sleep.
    heapsreal and L'engle like this.
  3. L'engle

    L'engle moderate ME

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    madietodd: some people say progesterone can help thyroid function. I'm on vitex now which is a herb that has progesterone effects but takes along time to work. I'm trying to increase my low body temperature and other mixed thyroid and adrenal symptoms. Curious about natural progesterone too.

    Sorry the other things haven't worked out! Sleep is so important. Glad you got out do the vines though. :)
    madietodd likes this.
  4. madietodd

    madietodd Senior Member

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    L'engle, I took armor thyroid for a long time years ago, and it didn't do a thing for me. I didn't notice when I stopped taking it, either. So I guess all I learned is that directly 'helping' my thyroid isn't effective.

    This doctor and I have a deal that for some meds it's quicker to just try them and see what happens. So we started with his best guesses and I've kept good notes about what happened.
    L'engle likes this.
  5. SOC

    SOC Moderator and Senior Member

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    Did the armour thyroid change any of your thyroid test results? I'm definitely hypothyroid and armour thyroid improves both how I feel and my test results. Daughter is very hypothyroid. She takes the synthetic and gets the same results -- feels much better and test results support that.

    madietodd ~ Interesting that florinef makes you sleepy. It doesn't effect us that way at all. Weird how different we all are.
  6. L'engle

    L'engle moderate ME

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    madietodd@SOC: I also tried armour thyroid a few years ago. I had a doctor run a hormone panel and based on symptoms suggested I try thyroid. I found it gave me a sense of being wired but then crashed my adrenals after a couple of weeks. So I've since been puzzling how to treat thyroid in a more indirect way that also supports adrenals. Some people find pantethine helpful for adrenals which I would like to try in the next while.
  7. SOC

    SOC Moderator and Senior Member

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    So your thyroid labs didn't come up low?
  8. L'engle

    L'engle moderate ME

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    My tsh was 3.8 so within range but outisde according to many. This doctor based on symptoms felt that it was very certainly thyroid. I've read several other people with mixed thyroid and adrenal problems have the same reaction to thyroid enhancing medicines. Going too much on strict lab results for endocrine issues tends to leave many people untreated.
    SOC likes this.
  9. SOC

    SOC Moderator and Senior Member

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    Without a doubt. :) I'd have tried thyroid under those circumstances, too. I've heard that most people would actually be best with a TSH around 1. That certain fits with my experience.
    L'engle likes this.
  10. madietodd

    madietodd Senior Member

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    My thyroid originally tested low normal, and the doctor thought a trial run with synthroid (ugh), then armor, might be useful. I have no idea why I stayed on it for years, and I don't think my labs changed much. I don't remember (haha, memory) anyone saying WOW, that helped.
    L'engle likes this.
  11. OverTheHills

    OverTheHills

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    Hi Maddie Have you tried LDN at all? I find it very helpful (and its the only thing I can tolerate that is) especially for better quality refreshing sleep but it only kicks in with me after a month.

    OTH
  12. August59

    August59 Daughters High School Graduation

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    @Madie - Please do not have taken Predinsone or Medrol in the past and expect Cortef to offer the same relief. I know Predinisone is 5 to 6 times stronger than Cortef. I'm not sure about Medrol.

    However, I took Cortef for 1 1/2 years with my highest dose ever was 20mg a day, but my avg was 15mg. When we decided it was time to come off of it. I dropped slowly to 12,5 mg - 10 mg - 7.5 mg - 5 mg for a few weeks and quit without any problem at all.
  13. madietodd

    madietodd Senior Member

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    OverTheHills, no I haven't tried LDN. Would you remind me of the patient profile it fits? I feel like there was a reason I never tried it.

    August59, I took Cortef many years ago, at 7.5mg a day. It helped a lot, but did strange things to my libido, and then I got worried for my liver. But my liver seems fine, and my doctor is not worried about liver damage from low dose Cortef. So I might try again, starting at 2.5mg twice a day. I don't have any symptoms that would warrant the use of prednisone.
  14. madietodd

    madietodd Senior Member

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    New things to try!

    For sleep, I stay on the progesterone and add estrogen gel. I'm willing to try this for the information, but I'm leery of staying on estrogen for any length of time. Also try Rozerem, 8mg at bedtime. This is not melatonin (which didn't work for me), but it increases melatonin in the body. Depending on how these work out, next on the list is 5-htp (helped some in the past) and doxepin drops, 5mg.

    He also mentioned that one patient of his with sleep issues much worse than mine got total relief using a Fisher Wallace Device. It costs almost $700, I can return it in up to 60 days, but there's a 10% restocking fee. So that will wait. Has anybody heard of it?

    Instead of florinef for dizziness etc...he decided against Cortef because my morning cortisol is middle-high normal.. We're trialling Yohimbe.
  15. Living Dead

    Living Dead

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    I'm pretty confident the potassium wasting effect is much of the point of using florinef. Else he would just have prescribed hydrocortisone or methylprednisolone, which are similar, but doesn't affect electrolytes so much. He wanted to increase blood pressure/volume, florinef does that by adjusting the electrolyte balance (such as excreting potassium). Taking extra potassium would just be counter-productive, as potassium lowers blood pressure.
  16. SOC

    SOC Moderator and Senior Member

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    I don't think so. It's a treatment for salt wasting. It increases sodium and thereby increases blood volume. Many people need additional potassium with Florinef to maintain proper sodium/potassium balance.
    Ema and ahimsa like this.
  17. madietodd

    madietodd Senior Member

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    Yohimbe is a bust......it made me very wired.

    I asked my doctor about LDN, and he uses it with this fibro patients. He hadn't heard of using it for sleep - it's gone on the list to try next if current ideas don't work.
  18. madietodd

    madietodd Senior Member

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    All of the sleep meds have failed, including doxepin which was my last trial. So I bought the Fisher Wallace Device. I'm getting 2 good nights of sleep (easy down, 2 wakings, easy back down) and 5 normal (4-5 wakings) weekly. I just chatted with them and they said to increase the intensity. So......more on that in a week or two.

    Estrogel at a half dose at night got me right to sleep, but knocked out my brain for the entire next day, and the effect got worse over time.

    I'm taking 2.5mg hydrocortisone in the morning, and it's helping with daytime energy. I'm going to keep it there while I play with the sleep device, and once my sleep is stable I'll see what happens if I take an additional 2.5mg HC in the early afternoon.

    So ATM my only meds are progesterone 200mg (bio-identical) and hydrocortisone.

    I just had blood drawn for a lyme test from pharmasan labs: "Cytokine test called MY Lyme Immune I.D.™, a cell and cytokine assay for the diagnosis of Lyme disease." I hope for results in 2 weeks.
    L'engle likes this.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Glad the "machine" is working! :) What is the scientific principle behind it? Is there a website? Is it something you have to stay hooked up to, or something you do before bed?

    Keep us posted on your Lyme results. How you get something definite this time.

    Sushi
  20. madietodd

    madietodd Senior Member

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    Yes, Fisher Wallace has a website. The device is self-timed for 20 minutes and then it shuts off. I use it am and before bed. It increases seratonin "and other neurotransmitters." It sends electrical impulses into the brain through electrodes held on with a head band. It's FDA approved for insomnia and depression.
    L'engle likes this.

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