1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

Need advice for endocrinology testing

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by SOC, Oct 24, 2013.

  1. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    I see an endocrinologist for a consult in 2 weeks. I hope he will be a reasonable doc to manage my hypothyroid condition, but I'd also like to have him look into other areas that might be affected by ME/CFS.

    Does anyone have suggestions for tests I should ask for? Our local medical monopoly is very strict about testing, so I have to have a legitimate, by their standards, reason for the test so I'll need not just "I want this test", but "I want this test because..."
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,653
    Likes:
    7,266
    Amersfoort, Netherlands
    Norepinephrine - can cause OI problems, and can be suppressed by a protein shown (in small studies thus far) to be up-regulated in ME patients after exertion. Acetylcholine is also suppressed by the same naughty protein.
    Emootje likes this.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    Ah yes, thanks! I'll put those on my list.
  4. Ema

    Ema Senior Member

    Messages:
    3,116
    Likes:
    3,186
    Midwest USA
    Can you test for this protein?
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,653
    Likes:
    7,266
    Amersfoort, Netherlands
    Yes, because they did it in the study. But I don't know if any normal labs can test for it :p
  6. Ema

    Ema Senior Member

    Messages:
    3,116
    Likes:
    3,186
    Midwest USA
    Of course!

    SOC, what are your major symptoms right now?

    I can think of tests for people showing adrenal stress, tests for those struggling with weight, etc but I'm not sure what is most applicable to your situation right now.
  7. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    Weight is definitely an issue. My fasting glucose is high despite a low-calorie, low/moderate carb diet. My lipids are a mess, too, despite a diet that should give me great lipid panels.

    My biggest complaints right now are PEM and cognitive dysfunction. I just can't do much without crashing, even if I try to start very small and slow. For example, I can't shop anywhere bigger than a convenience store because I crash from the walking.

    I used to have low temp, but I haven't checked that in a while. Maybe I should do that before I see the endocrinologist.....
  8. WillowJ

    WillowJ Senior Member

    Messages:
    2,855
    Likes:
    2,204
    WA, USA
    all the best with your appointment

    I don't have any advice, but I hope it goes well and you get some good help.
  9. Ema

    Ema Senior Member

    Messages:
    3,116
    Likes:
    3,186
    Midwest USA
    Isn't that just a pisser to eat a low calorie low carb diet and STILL struggle with weight? It makes me so mad!

    Have you tested your fasting insulin? If it is high, you might think about trying Metformin. It didn't work for me, but I know it does work for a lot of people.

    Also, if you google Holtorf and leptin, you will find a lot to read about elevated leptin levels being responsible for weight unable to shift. They are treating this with some novel methods, including the Byetta pen. I've not yet been able to talk my extremely open minded doctor into a Byetta pen though so you may have some resistance as well. You can test leptin though to see if it is high.

    They also treat this with Wellbutrin and naltrexone...it's a higher dose of naltrexone than what we typically use in LDN, but lower than what is used for drugs. This might also be an option if you think that your dopamine is low. I think Wellbutrin is the only AD that I would consider trying these days because there doesn't seem to be much of a withdrawal syndrome.

    Sex hormone labs are also an option as certainly low estrogen can cause brain fog. But again, you may encounter some resistance.

    Otherwise, I'd say to just make sure to do the basics...TSH, FT4, FT3, RT3, and a full iron panel with ferritin.

    Have you read the new Datis Kharrazian brain book?

    I think it's pretty great. And he talks about diabetes and insulin resistance in terms of the brain as well. I found it fascinating and still hope to write a review of it before it goes out of print! :)

    http://www.amazon.com/Isnt-Brain-Working-Revolutionary-Understanding/dp/0985690437
    SOC likes this.
  10. Emootje

    Emootje Senior Member

    Messages:
    280
    Likes:
    94
    The Netherlands
    If your doc is in a real good mood you could ask him to test also for serum aldosterone and plasma renin activity. High levels of aldosterone/renin/norepinephrine are seen in low blood volume diseases (such as ME/CFS). However in POTS patients there renin-angiotensin-aldosterone system can be messed up. In a Vanderbilt study they found a paradoxically low aldosterone/renin ratio in POTS patients with low blood volume.

    There explanation for the low aldosterone levels:
    "Aldosterone secretion is controlled at many levels: it is stimulated by angiotensin II, potassium, and hyponatremia, and acutely by the adrenocorticotropic hormone; it is inhibited by dopamine and atrial natriuretic factor (ANF). Electrolyte abnormalities are not likely to explain the low aldosterone as the sodium and potassium levels were similar in the POTS group and controls. Although we cannot exclude the possibility that there are abnormalities in ANF or increases in adrenal dopamine concentrations that could contribute to the low aldosterone state, the most likely explanation for the renin-aldosterone paradox is an inappropriately low level of angiotensin II"
    Little Bluestem, SOC and Valentijn like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,958
    Likes:
    4,084
    australia (brisbane)
    Osmolarity blood and urine test might also help. I did this recently but don't get results for another month.
    SOC likes this.
  12. aimossy

    aimossy Senior Member

    Messages:
    1,442
    Likes:
    1,609
    NZ
    I read in Dr Ros Vallings book that it is common for women with ME to have low estrogen SOC. you guys know way more than me that's all I can contribute.I also saw that in a gp primer booklet on ME recently:)
    SOC likes this.
  13. Ema

    Ema Senior Member

    Messages:
    3,116
    Likes:
    3,186
    Midwest USA
    If you are on Florinef, that will interfere with aldosterone testing.
    Emootje likes this.
  14. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    Yeah, sigh, we'd have to deal with that. Not sure I want to get through doing without the Florinef for a while, but if the testing will improve the quality of treatment, I'll do it.
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    Is that for evaluating low blood volume and/or the amount of water in the blood?
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,958
    Likes:
    4,084
    australia (brisbane)
    Im not sure but i think its basically how watered down it is or not??
    SOmeone correct me if im wrong.
  17. barbc56

    barbc56 Senior Member

    Messages:
    1,253
    Likes:
    635
    I had this this test when I had hyponatremia/low sodium.

    http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=osmolality_blood
    heapsreal and SOC like this.
  18. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    Thanks, folks, for your help with a list of tests.

    Now I'm putting together my argument for getting these tests. With my local EBM medical monopoly it's always a battle to get appropriate testing.

    We all know that if you go in with a long list of symptoms, they just label you "hypochondriac" and quit listening. :rolleyes: On the other hand, if you don't tell them the right symptoms, they won't order the tests you need. **Sigh**

    So, I'm trying to craft a list of symptoms that will cause the endocrinologist to order the tests without scaring the pants off him with the full list of my ME/CFS symptoms. :rofl:

    I'm planning to take in the ME/CFS Primer with the section on Neuroendocrine Dysregulation highlighted. It says:
    Any thoughts on any other symptoms/issue I should mention?
  19. SOC

    SOC Moderator and Senior Member

    Messages:
    5,034
    Likes:
    5,649
    USA
    :mad::mad::mad:
    After all my careful planning, I still got the brush-off. :mad: All he's willing to do (and yes, I showed him the ME/CFS Primer) are TSH and FSH tests. Like we haven't been doing TSH every 3 months for ages. Yeah, that required an expensive endocrinologist to decide. :rolleyes:

    I cannot begin to tell you how much I hate my local mega medical monopoly. They charge outrageously -- their already high prices doubled in the past 6 months -- and they do nothing. What a scam! :mad:
  20. Ema

    Ema Senior Member

    Messages:
    3,116
    Likes:
    3,186
    Midwest USA
    Grrrrr. :(

    :hug:
    Little Bluestem and SOC like this.

See more popular forum discussions.

Share This Page