Re: Disabled from PCOS, have found out there are other rare supersevere cases
From: ALicia (anonymous@obgyn.net)
Mon, 13 Aug 2001 10:25:18 -0500 (CDT)
At Mon, 6 Aug 2001, Sonnet wrote:
>
>Hi Sonnet
>
>I haven't ever had a clue about sleep apnea, as far as I know I've got
>no signs of it but it is better safe than sorry, I'll look into having
>it tested.
I would have it tested. It has changed my health. Wieght can stay on
without it. I get sick if I have a night where I accidentally take off
the mask or fall asleep wihtout getting it on. It makes a big
difference in energy levels and clarity of thought.
>
>I'm not on any steriods that I know of, and I have had the 24 hour urine
>cortisol tests which came back negative. I assume this ruled out
>pituitary stuff but you really do never know!
I dont trust the urine cortisol tests. My doctor tells me I have
polyglandular autoimmune too. My cortisol tests even off of
Flovent--years ago read borderline high around 90 or so and thats
distrubing. I have 7 times the hormones of the
adrenals--hyperadrenalism but my doctor told me that was from the poly
glandular and PCOS being so severe. Its hard to understand. Sometimes
Im sure my pituitary is up to no good too. I never could get tumors
outruled because of inability to lie flat and breathe in an
MRI...Doctors told me well if you had Cushings, youd be dead already
Alicia. and wouldnt have gotten better off these other meds.
>
>My thyroid at least used to be under very tight control, is that what
>you mean by getting TSH where it should be?
9.5 is high. Actually in PCOSers even numbers that appear lower for
thyroid are worse. We are more affected I have read that. Yes it needs
to be under tight control. Between 1- and 2 is best. Mine is being
lowered down to 2 from 3 recently but when I was sick my TSh was worse
then yours. Double digits somewhere.
>
>Metformin seemed to be doing wonderful things for me at first, but it
>really only ended up helping the hypoglycemia and mood swings. I still
>would go through these months with approx 30lb weight gain appearing
>seemingky overnight.
Its helped me. I am losing I think but water weight from the lymphedema
has complicated keeping track. I can gain 40lbs from water even.
I'm trialing the new INS-1 drug but if it doesn't
>work out, my next step is to look at Avandia and see if that helps! I
>also am thinking about trying aldactone - if nothing else, it might make
>a difference in my acne.
Adlactone weirdly helped my weight. I think by blocking the androgens.
I would certainly try it. What is the new drug. Does it have a name
yet?
>
>I find I have some "symptoms" or other things going on with my body that
>don't fit into a diagnosis of PCOS or Hypothyroid - like not being able
>to bear bright light, a severely depressed immune system, frequent
>nosebleeds, the huge weight gain, low blood pressure and blood lipids,
>high testosterone ON Metformin that normalized OFF it.
I have weird diagnoses even and other signs that are weird. Im turning
dark skinned now all over--no liver or kidney or heart failure as of
yet, I also cant bear bright light. my weight gain was talk show scary.
My testosterones do read high and so do the insulins so those are PCOS
in me. I would do complete adrenal testing in your case....You could be
looking at late onset congenital adrenal hyperplais...or other problems
mistakened for PCOS. Ask for Full urine adrenal tests for adrenal
hormones, this helps them determine. This site is good for other
endocrine tests evne if you dont have CUshings...http://www.cushings-help.com
Something else
>HAS to be going on but I just can't figure out what on my own! Wish me
>luck with the new endo - maybe he will have a clue about putting all of
>the pieces together.
I hope they do. I spent FIVE years even trying to figure out the weight
gain. It gets absurd now doesnt it?
>
>Thanks again for your input - it really, really helps. I'm so pleased
>for you tha you're starting to feel better and be more in control of
>your body after all this time. Take care.
Thanks Sonnet. I am dealing with the lYmphedema but the rest is
defintely getting better. My immune system is the best its been in
years. Keep me up to date what happens. hope it all works out.
>
>--
>Sonnet
>
>At Sat, 4 Aug 2001, ALicia wrote:
>>
>>Sonnet heres what I had to do to lose weight:
>>
>>1. Be on sleep apnea treatment--sleep apnea can turn 300lb people into
>>600lb people easily in some cases. Get tested even if you think you may
>>not have it. I delayed it much too long.
>>2. Go off steroid inhaler...that did a ton of damage too--had Pseudo
>>Cusings. I refuse all steroids or meds that can cause weight gain
>>within reason.
>>3. Wait for thyroid to get to normal TSh, this took a year in my case
>>and it did stop the gain and start a slow reduction.
>>4. Metformin has helped.
>>5. Aldactone because I have so many adrenal problems...Doctor has never
>>outruled a rarer adrenal problem has helped weight.
>>6. I have to eat special to control weight (to keep from gaining)--I
>>cant diet severely but I do eat no desserts high protein and the only
>>carb I will eat is high semolina pasta and whole grain bread.
>>
>>I have lost 160-170lbs which means Im about mid400s down from 630. in
>>the last three years. I hit major plateaus and lose about 60 a year
>>usually. Howeve rnow I am facing some major edema lymphedema problems
>>which is not making me look too thin lately! LOL Weight is still a
>>struggle. I am playing catch up. My body has literally been destroyed
>>by this weight so my stamina is only somewhat better since the 600s.
>>
>>If you are gaining so fast, it is defintely due to a medical problem,
>>either your thyroid isnt being treated correctly or the PCOS combined
>>with the thyroid is shooting the weight skyhigh. Make sure you are not
>>on steroids too. Go to http://www.cushings-help. com to get info on a
>>possible pit tumor. Cushings except for pseudo due to severe PCOS and
>>steroids in me was never outruled because I cannot lay flat and breathe
>>in an MRI...however doctor says its PCOS because I would have dead by
>>now...if it was untreated Cushings. (I do have hyperadrenalism and a
>>huge overlap with Cushings symptons and signs. Severe PCOS can do this)
>>
>>To really get the info on a pit tumor, ask for cortisol urine tests. I
>>had them and they were negative but I was positive for every other sign
>>of hyperadrenalism. High cortisol is the marker for pit tumors or
>>adrenal tumors.
>>
>--
>Email always welcome to: sonnet_fitz@hotmail.com
>
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