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Diagnosed with Hashimoto's

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Oct 28, 2015.

  1. littlebird6180

    littlebird6180 Senior Member

    I've posted in here a couple times but the nutshell version is that I've been sick for 20 years since I got mono and hit puberty at 15. It wasn't until after my 2nd daughter was born that I decided it was time for me to aggressively deal with my health. In the past, I've been lead down so many false roads with diagnosis and treatments. And so I tended to avoid doctors unless there was a crisis.

    Anyway, in July I got in to Dr Klimas office for an evaluation. I was diagnosed with CFIDS/ME. My immune function was awful across the board, particularly NK count and function. The doctor referred me to an endocrinologist who specializes in female hormones to do a workup. Just got those results and am now diagnosed with Hashimoto's disease. My thyroid function is normal but I have thyroid antibodies. So it doesn't seem like there is a treatment.

    This new doctor told me with any autoimmune disease, having one means you have a 50% likelihood of developing another like lupus or RA. That was scary. But once I got home and looked up hashimoto's, it seems like it is only related to the thyroid. So what explains all my other immune dysfuntion? Could I already have a second autoimmune disease?

    I have my 4th neurology test today (MRI) and get all those results tomorrow. Feeling scared about what they'll discover. Just seems like the more I commit myself to getting well, the more I learn how unwell I am.

    I guess the good news is that LDN finally seems like it's working. I am up to 3mg and have noticed significant improvement in mental clarity and sustained energy. I'm still getting migraines 2-3 times a week though and definitely notice setbacks every time I try to increase the dose so I'm taking it really slow.
  2. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    I :heart:LDN. Here are some thyroid links you might want to check out. If you're still eating gluten (and dairy) you might consider eliminating it.

    5 Lies About Your Thyroid Disease That You’re Likely to Hear

    Izabella Wentz, Pharmacologist Several Hypothyroid vids, incl Dragone
  3. digital dog

    digital dog Senior Member

    Give up gluten (100%), take selenium, and try digestive enzymes with meals.
    And PLEASE let us know how the LDN goes and how much it reduces your thyroid antibodies. You will probably find that you no longer have antibodies with the LDN.
    I couldnt tolerate LDN and I am completely distraught about that but my antibodies halved after a month of gluten free...dont feel that much better though.
    How long have you been on the LDN for and did you get any start up side effects for the first few weeks?
  4. littlebird6180

    littlebird6180 Senior Member

    Thank you for all those helpful links ahmo!

    I've been on LDN since July but was only on 0.5mg when I had this blood test drawn for Hashimoto's. So I don't think it was making a difference or maybe my numbers were even higher and because of LDN they brought it down.

    The first few weeks I got terrible side effects. I was completely knocked out by LDN, even at 0.1mg. I couldn't stay awake past 8pm and felt sort of catatonic throughout the day. This lasted about 3 weeks. But my doctor still wanted me to increase very slowly. So i'm just now at 3mg. And it wasn't until I hit about 2mg that I noticed any positive effects. I had sudden sustained energy and mental clarity. However, I still have bad days and I think those tend to correlate with when I try to increase the dose or are related to my menstrual cycle.

    I'm sorry you couldn't tolerate LDN. How long did you try? It seems from everything I've read, a lot of people give up but it can take months for your body to adjust to it and the side effects to settle. I'm extremely drug sensitive and always get strong side effects so it did take time for me to get over them but I'm glad I did. Sorry it didn't work out for you!

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