Re: Disabled from PCOS, have found out there are other rare supersevere cases
From: ALicia (anonymous@obgyn.net)
Sat, 4 Aug 2001 15:42:55 -0500 (CDT)
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.
t Fri, 3 Aug 2001, Sonnet wrote:
>
>Alicia I've been following your posts over the past few years and I
>can't even remember if I have ever introduced myself. I'd love to talk
>more to you about the severe PCOS thing. In the past 2 years almost
>exactly, I have gained 100 pounds. I'm currently at 350 and the last
>few weeks I have been gaining at the rate of 3 lbs a week. This scares
>the heck out of me and I'm not sure what to do! I have also been
>diagnosed with severe hypothyroid and at one point they told me they
>suspected a pituitary tumor but then no one followed up on that. I feel
>very alone in dealing with this, particularly the rapid weight gain, and
>no doctor I go to seems to have any answers either. What answers did
>you find out? How did your reverse the weight gain? It seems the more I
>diet or take medication or excercise, even if I am low carbing, the
>worse the weight gain is. I stopped being able to work full time 2
>years ago and part time a few months ago. I can't fit in a lot of
>places, even cars. It's tempting to give up but I know in the back of
>my head that's not an option. Can you share any insights with me?
>Thanks -
>
>--
>Sonnet
>
>At Fri, 3 Aug 2001, ALicia wrote:
>>
>>I havent been on here much lately. In 95-97 I had a huge 350lbPLUS
>>weight gain and have been diagnosed with very severe PCOS as of 2000.
>>Ive lost 160lbs-170lbs slowly over past three years, but I have 200 more
>>to go to be at a decent weight...I reached 630lbs after having lived a
>>normal life @240 at 6 feet of height for 12 adult years before the rapid
>>gain began. I have hyperadrenalism and even CUshings was suspected but
>>for now I am diagnosed with a serious case of PCOS and thyroid disease.
>>I want people to know that there are women who are DISABLED by this
>>disease. I am. I am getting better medicines and such have helped me
>>lose weight....however PCOS has caused me major difficulties. I went on
>>Metformin about 6 months ago and it is helping my health CONSIDERABLY.
>>Ancothis nigrois disappearing. Anyhow its been a struggle, since my
>>weight got so high, i am struggling with lymphedema and other health
>>troubles that are weight related and further endocrine problems--needing
>>increases in thyroid meds all the time and my doctor is closely watching
>>my adrenals.
>>
>>I called a PCOS person who told me that a doctor who specialized in PCOS
>>had confronted other cases as severe as mine. I thought I was it, but I
>>found out, No I am not, there are other women who seem to have PCOS in
>>this way.
>>This is not to say that others dont suffer or have troubles...or to try
>>and do one upmanship. Heck Im mourning my own infertility because Ive
>>been told NEVER even if I lose all the weight in the world and gain a
>>great degree of health back. I know that is very painful.
>>
>>I dont come to this board very often so I only post to sometimes meet
>>women who have gone through what I have. I have two good friends as a
>>result of this from other boards. Support is important in this painful
>>disorder. Also i want to say Hi to Paula! if she is still here.
>
>--
>Email always welcome to: sonnet_fitz@hotmail.com
>
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