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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. L_avender

    24-hour steroid hormone urine test results

    Hi Research 1st, Thanks so much for your reply. We have stacks of test results from 2010 -2015,r and have just A couple of years ago she was actually diagnosed with PCOS and the PCOS symptoms have improved significantly, as far as regularity of her periods go. From none what so ever for three...
  2. L_avender

    24-hour steroid hormone urine test results

    I have not posted here very often, but this forum is an incredible source of information and has proved very useful to find answers to many questions. I am and have been for going on ten years searching for the mystery illness that has a hold on my now 27-year old daughter. Just recently we...
  3. L_avender

    Desperate to know what these results mean

    When she last visited the endocrinologist last year, I asked him if she could be suffering from Cushing's. She has many symptoms although she misses a number of vital ones. Just copied the list of common symptoms of the Mayo Clinic website: Common signs and symptoms involve progressive obesity...
  4. L_avender

    Desperate to know what these results mean

    Yes her taurine result was after, but she only started just before the testing, so I was surprised to see such elevated levels in such a short period of time. The B12 she injected was hydrocobamin 1000 mcg. (Oops! Is that the same as hydroxycobalamin??). The months following the injections she...
  5. L_avender

    Desperate to know what these results mean

    Hi Helen, Thank you so much for sharing this info. In the last tests (Jun/Jul 2014) this was the outcome of the ferritine and iron (blood): Ferritine 22 ------ ------ ng/ml 16 - 280 (so within the range but very low) Iron 23.5 ------ ------ μmol/l 14.0 - 36.0 (normal) Iron measured in 24 hr...
  6. L_avender

    Desperate to know what these results mean

    That doesn;t sound very promising, I have to say! Sorry to hear this Valentijn.
  7. L_avender

    Desperate to know what these results mean

    My daughter was treated by dr. Musarella in Zeist, also one of their diciples. He was the one who ordered all tests that were done early this year, all done in laboratories in Belgium and I suspect that they are also used by other physicians mentioned here. Musarella told me that he didn't think...
  8. L_avender

    Desperate to know what these results mean

    Thanks for your post Sea, it might have something to do with her vegetarian/vegan diet (roughly seven years), but I'm no expert. She isn't vegan / vegetarian anymore but only consumes small amounts of meat in the shape of bone broth and some fish and eggs. One of her supplements is...
  9. L_avender

    Desperate to know what these results mean

    Research 1st, she has serious stabbing pains in her chest area and sometimes trouble breathing, but this always starts when her tension rises, so we have not related this to Aspergillus as yet, more to a stress response. We certainly will look into the aspergillus aspect soon.
  10. L_avender

    Desperate to know what these results mean

    Exactly, thanks so much for that :)
  11. L_avender

    Desperate to know what these results mean

    Thank you Research 1st, for your huge post with a lot of useful information. Repeating the test in a more conventional lab is exactly what I would like to do. I am going to study your post in detail. Thanks again!
  12. L_avender

    Desperate to know what these results mean

    As much as I would like to say that they have looked into everything, the thing is, I feel that they haven't. I was with her when she went to see them and - as all visits were in the same hopital group - they looked at her previous results, did not see anything alarming and did another set of...
  13. L_avender

    Desperate to know what these results mean

    Hi CantThink, the endocrinology team she has seen only did minor testing, see below. These are hospital test results (in Dutch sorry, but probably not hard to decipher and no reference values) from 2010 until 2013. I can't find their referencee values anywhere.
  14. L_avender

    Desperate to know what these results mean

    Thanks for the tips, no we haven't looked info autonomic dysfunction nor tested for insulin resistance. She certainly looses the hair on top of her head, and suffers from hirsutism as well. This was due to PCOS we were told. I will look up the fora you suggested, thanks! She has had some minor...
  15. L_avender

    Desperate to know what these results mean

    Just a quick remark, I have decided to join this forum and ask for opinions in addition to the treatment she is getting. As she is really very ill I am pulling out all the stops and really appreciate a lot of suggestions that have been posted here. Things we can work with, omit and test.
  16. L_avender

    Desperate to know what these results mean

  17. L_avender

    Desperate to know what these results mean

    Hi A.B. HORMONOLOGY-BLOOD (Jan 2014) ACTH 7,4 pmol/L Ref values for deep frozen EDTA plasma: Morning sample ( 8u00 - 10u00) : 2,2 - 13,2 pmol/L Evening sample (20u00 - 22u00) : 1,3 - 6,6 pmol/L Blood test (fasting) was taken around 4 pm but - and I don't know if that is relevant - she only...
  18. L_avender

    Desperate to know what these results mean

    She has seen three endos since 2006 and in 2013 had a CT-scan of the adrenals done. The endocrinologist said cancer was ruled out. I mentioned adrenal fatigue as at the time I wasn't aware of adrenal insufficiency. He said she definitely had signs something was not right but would like to refer...
  19. L_avender

    Desperate to know what these results mean

    Hi Sidereal, I posted the list of past and current supplements yesterday. I have the feeling she is not doing so well with this many supplements.
  20. L_avender

    Desperate to know what these results mean

    Valentijn, that really worries me. This is playing with people's lifes! I am so worried now. Feel like chucking all the supplements and see how she copes without them, as they were all based on those results.
  21. L_avender

    Desperate to know what these results mean

    Hi Jonathan, Your response really worries me, the info about the unreliable labs. It is so hard to know who to believe as all doctors book positive results with one patient and not with another. We have gone down this path because we trusted certain people to know what they were talking about...
  22. L_avender

    Desperate to know what these results mean

    One thing I forgot to mention (sorry about that) which could be very important is that she used to be a vegetarian for a couple of years (from 2008 until 2010) and then switched to veganism until June this year.Since she started becoming a veggie things have gone downhill. Her stress levels...
  23. L_avender

    Desperate to know what these results mean

    Hi everyone, what an overwhelming number of responses, for which I am extremely grateful. I will try and address all queries but some general issues in this post. First of all, the lab results I have posted were the ones that were outside the reference values so for instance because T4 was...
  24. L_avender

    Desperate to know what these results mean

    Just a quick reply before I go: The January tests were done by AML in Antwerp - Belgium and by RP Medical laboratory Roman Pais in Nijvel – Belgium, a reputable lab over here in Europe. Executed by Dr Mussarella, a well known alternative hormone specialist in the Netherlands, but not on the...
  25. L_avender

    Desperate to know what these results mean

    Thank you for the replies, I will respond in the morning (it's bed time here) to all of your reactions.
  26. L_avender

    Desperate to know what these results mean

    Yes she has been on a gluten free diet for about six months now. No improvement at all.
  27. L_avender

    Desperate to know what these results mean

    I have just registered today, but I've been reading lots on this forum as it is the best I have found so far. As I already said in my introduction post, I live in the Netherlands and have a 26 year old daughter who is extremely ill, no one seems to know what exactly is wrong with her, but lab...