How do I test my pituitary?? Adrenals??

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, Jan 5, 2007.

  1. Hope4Sofia

    Hope4Sofia New Member

    I know many of you have experience with this so I'm hoping to find some help here.

    I have believed the pituitary plays a big role in my condition for a long time but haven't been able to get anyone to look into it because they say it's "rare".

    I had an MRI last year to rule out MS - would they have found it then?

    Recently, I was tested for hormones because of a 6 week period. This followed a year of very strange scanty periods. The results showed a low FSH, Low Testosterone, Low progesterone and I don't know what else because I haven't met with the Dr yet.

    I am 33 and not menopausal yet. They also found a 3.5mm cyst on an ovary and a somewhat thick endometrial stripe.

    It could be hypo or hyper thyroid but I seem to have symptoms of both! I've gained weight recently and I've started having night sweats and hot flashes. THEN I go back to feeling cold.

    I also have thyroid nodule on my throat. I've had trouble swallowing for a while. It's not visible though, just palpable.

    HELP! I'd love your input, suggestions, experiences, anything.

    Sofi
  2. Hope4Sofia

    Hope4Sofia New Member

    Bumping for answers.
  3. Catseye

    Catseye Member

    I burned out my adrenals early this year with diabetes insipidus, getting dehydrated everynight and ruining my day. That went on for 6 months before I finally figured out what it was - my hypothalamus was not instructing my pituitary to manufacture the antidiuretic hormone. I had been seeing doctors, but they had no clue.

    So I got the antidiuretic hormone to take care of that - it's what causes your kidneys to recirculate water back into your body instead of routing it to your bladder for elimination. I had been reading about cfs and damage to the hypothalamus-pituitary-adrenal axis and I figured I had some hormones out of whack besides the antidiuretic one. So I got them all tested and, as usual for me, everything came back normal. But I could look at the symptoms of adrenal stress and see that I had severely fatigued adrenals.

    So I read online about hormones and decided that dhea and pregnenolone were the things to try. They can be used by the body to make many other hormones. I talked to an adrenal specialist about them and he agreed I should try them. I think I took about 5 mg of each to start and increased to about 15 mg of each. They helped me with energy in the morning and afternoon. The doc said 3 x per day but I was only taking them when I got up in the morning, between 7 and 8 and in the afternoon around 4 or 5. That's your normal cycle for cortisol, which is what I was concentrating on.

    Immunesupport has an adrenal support supplement available with nutrients that the adrenals can use; it has alot of pregnenolone, like 50 mg and only 10 mg of dhea. But your body can use pregnenolone to make dhea if it needs it, so that's okay. If you want to try it, start with one pill in the morning. But ask a doc or at least read up on them first so you know what you're getting into, that's what I did.

    I also used Adrenal Stress End, another supplement with adrenal nutrients but no dhea or pregnenolone so I had to take them separate. I cleared up my adrenal fatigue in about 2 months. Here's a site with alot of info on adrenal fatigue:

    http://www.drlam.com/A3R_brief_in_doc_format/adrenal_fatigue.cfm

    Also, I started eating more salt and that helped alot; if you have too low salt, that helps to stress your adrenals. But don't eat like regular Morton's crappy salt, sodium chloride; go to a health food store and get some sea salt or a good blend with trace minerals. Then you don't have to worry about salt intake so much.

    I also assumed I was having problems with thyroid a little bit. So I got some Kelp for iodine and a thyroid supplement with nutrients that support the thyroid. Here's what was on the label:


    Vitamin B12 (as cyanocobalamin) 100.00 mcg 1,666%

    Iodine (as potassium iodine) 200.00 mcg 133%

    Magnesium (as magnesium oxide) 200.00 mg 50%

    Zinc (as zinc gluconate) 6.00 mg 40%

    Copper (as copper gluconate) 300.00 mcg 15%

    Manganese (as manganese gluconate) 2.30 mg 115%

    Molybdenum (as sodium molybdenum) 100.00 mcg 133%

    Sodium 20.00 mg <1%

    L-Tyrosine 248.00 mg *

    Multi-Glandular Complex liver, lung, pancreas, heart, kidney and spleen. 70.00 mg *

    Thyroid Extract (thyroxin-free) 8.00 mg *

    I pretty much cleared up my hormone imbalances myself, at least the symptoms of the glands not working disappeared. My blood levels were in the "normal ranges", but I don't know what was normal for me before I got sick. So I was probably a little low within the "normal range". And the docs wouldn't give me anything because all the levels were within that range. I never did anything about the progesterone or testosterone. I think the dhea and pregnenolone gave my body a good headstart. I did get a couple of shosts of hydrocortisone in the beginning when I felt like I was dying from weakness and it helped alot with the dying feeling but I was still weak.

    Well, that's what I did and it worked for me, but my levels weren't way off.

    good luck!

    karen
  4. skyblueviolet

    skyblueviolet New Member

    Hi Sofi,
    I'm brand spanking new here (had FMS since emerging from the womb) but I saw the title of your post and am hoping I can help you.

    I'm 35 years old and have always, always had regular periods. Then this past July they just stopped. After never having missed one (or even having been late), this concerned me. When three months passed without a period, full-fledged panic set in. I went to a GYN (natural first inclination), who did a few blood tests, including a thyroid function panel and prolactin level--prolactin being the hormone that allows mothers to produce milk for newborns, and is excreted by the pituitary.

    While my thyroid levels were normal, my prolactin level was, as the nurse said, "off the charts." It turns out that I have what is called a prolactinoma, which is an adenoma, a (generally, almost always) benign growth on my pituitary gland, causing the overexcretion of prolactin, which in turn had been the source of my missed periods. (I discovered, incidentally, that this may have been brought on by the chronic use of cimetidine, which I have since stopped taking.)

    I have also been thinking along the same lines as you are, which is, what kind of a role is this playing in my FMS? While I've had symptoms since I was a baby, it wasn't until age 30 or so that it blossomed into full-fledged OUCH.

    What I've come to suspect is that I've had this growth on my pituitary for some time and that it has simply gone uninvestigated. When you wrote, "I have believed the pituitary plays a big role in my condition for a long time but haven't been able to get anyone to look into it because they say it's 'rare'," BOY did my ears perk up! I have had the same feeling, that all the "normal" things they look for when you present with FMS symptoms--a rheumatoid factor, or a CRP in my case--will probably come back nondiagnostic. My thyroid functions have always come back normal, despite several doctors saying they thought my neck looked "thick" and may or may not have felt a goiter.

    I think that, since the pituitary gland is sort of the "hub," it would make perfect sense that there is pituitary involvement in all kinds of health issues, and it just hardly ever gets tested.

    At this point, I have been instructed to go back for an MRI in three months, before which they will repeat my prolactin level to determine whether it has remained stable or not. I wish I had more information to give you, and perhaps within three months I will, but I just wanted to reply to this and let you know that this is something that I have been (perhaps luckily?) facing lately. In a weird way, I'm thinking it might be a blessing in disguise--perhaps, if the FMS symptoms are related to the prolactinoma, and treating the prolactinoma also happens to alleviate at least SOME of the symptoms...well, wouldn't we just have ourselves a miracle. lol.

    I'll keep you posted as to my findings, if you'd like.

    Peace and Health and all that good stuff,
    SBV
  5. Hope4Sofia

    Hope4Sofia New Member

    Thank you for responding to my post.

    You're right Jam, I need a great doctor. My neuro has been pretty good but we're just getting into the endo stuff since my thyroid labs in the past were normal. OF COURSE!

    Thank you for all the input Karen. I am writing it down for consideration when the testing is done. (which seems to be never.)

    SBV, I really appreciated you sharing your experience. Did they ultimately diagnose your prolactinoma by MRI or was it from the labs? Did it show up clearly on the MRI?

    I get terrible cluster headaches also and have recently discovered studies which link hormonal involvement to them. There is even a link between Pit tumors and cluster headaches.

    I understand that you need to look for the horses first but when you've searched the hell out of the horses it's time to look for a zebra or two - Right?

    Anyway, thank you all for your contribution to helping me figure this out.

    Sofi
  6. JLH

    JLH New Member

    I believe an Endocrinologist could do the tests by blood work.
  7. kjfms

    kjfms Member

    I have a pituitary macroadenoma which means it is >10mm microadenoma is <10mm

    We are still finding out exactly what kind it is though. Mine has doubled in size in 11 months.

    You need to see an endocrinologist or a neuroendocrinologist if you can find one.

    I was first diagnosed by CT scan which was surprising because MRI is more sensitive and still the preferred method of diagnostic testing for pituitary adenomas (tumors).

    The technique used for MRI is Pituitary protocol and is done with thin section imaging of the sagittal and coronal planes (these are just anatomical positions) before and after contrast of the sella turcica this is the bony box which houses the pituitary gland.

    The sella turcica is located basically in the center of you head if you were to draw a line from ear to ear and then in between you eyes and straight back through you head where the lines cross sets you sella turcica and in it your pituitary gland.

    Sometimes pituitary adenomas will show and sometime they will not this is why you also need to see an endocrinologist for specific testing.

    You might want to check out Pituitary Network dot org they have a lot of information I am not a member (they want too much money) but I do a lot of reading there and they have a great page with links for other resources on pituitary information.

    I hope this helps a little and wish you the best of luck.

    On a side note if you are thinking you are not menopausal because of your age I did want to let you know that women starting menopause in their 30s is actually more common than what is believed -- just a side bar.

    I sure hope you do not have one of the godawful adenomas because they are h311.

    I am like you I suspected one before being diagnosed and if you are like me you know your body very well.

    I hope you find a good physician -- I have had to resort to playing hard ball but hey whatever it takes to get the job done right?

    I am at the point where the headaches alone are killing me -- I have had them daily forever it seems before being diagnosed....make a body wonder...

    Take care,

    Karen :)
  8. Hope4Sofia

    Hope4Sofia New Member

    Thank you so much for your reply. It was very helpful. I am going to get aggressive about ruling this out.

    I get terrible cluster headaches - intense amount of pain. As I've read about them the researchers believe they are a result of a malfunction in the HPA axis.

    Thank you again - means a lot to me.

    Sofi
  9. Jeanne-in-Canada

    Jeanne-in-Canada New Member