Hello,
I am happy to find this site. I was diagnosed with Addison’s less than a month ago. I feel blessed to have been diagnosed so quickly. I have only been sick for six months or so and not acutely until just recently. My primary doc diagnosed me. I have seen a PA in endocronology and I like her although I feel lost in trying to figure all this out. Just this morning my PA/doc called to tell me that I also have hypothryroidism. I am trying to do everything right but feel like my body is just shutting down.
No questions tonight but I am happy to be here.
Kristen
it is ok if you are confused, it’s very difficult for people to understand…
even doctors… doctors dont’ understand that well either.
Rick
kristiann addisons-cpt6667@lists.careplace.com wrote:
it is very difficult to understand about this disease. i was diagnosed
last march, and i have been seeing several specialists, including endos,
nephrologists, urinologists, and cardiologists. none of them really under-
stand how this works. i am on 20 mg hydrocortisone and 0.1 mg florinef.
i am still having trouble with my electrolytes. i was recently diagnosed with
renal failure. i have several brown spots on my face. i am not sure what is
causing this. also, my renin count is dangerously low—was told nothing could replace the renin. it is very depressing to always feel so bad, but i
feel fortunate to be alive.
--------------Boundary-00=_6FFX7H3E24L000000000
Content-Type: Text/Plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi, this disease is not too bad once you get the hang of it. I’m not say=
ing
that it is easy to feel good just the mechanics are pretty straight forwa=
rd.
I also went through the renal failure and have been stable for 2 years n=
ow.
I do have kidney damage but do not require dialysis or transplant surger=
y
at this time. What specifically is happening with your electrolytes?
(numbers/ranges/mineral) Most of the time low renin is the result of too
much aldosterone (florinef). The aldosterone/renin should be a see saw
effect when one goes up the other down and vice versa. The same holds tr=
ue
for potassium and sodium but neither seem to be absolute rules. I have s=
een
with my own results that there are variables to this having had high reni=
n
and high aldosterone before becoming primary adrenal insufficient. The
doctors repeatedly said “that’s not possible” and sent blood work to 3
different labs and all reported the same wacky situation. Some how it
resolved itself after I stopped Topomax. (no known side effects like this
but there is potassium loss possible). The brown spots on your face are
normal with Addison’s. It’s just part of the disease unfortunately. All=
my
scars have turned into brown spots including where my face was torn open =
as
a child on a barbwire fence. I am tan in places that have never (EVER) s=
een
the sun (under breasts, creases in my skin from being obese, vaginal area=
,
back of knees (has seen sun but not in 10 years). I haven’t bee seen in =
a
bikini in over 20 years so my midsection is always covered. It is weird =
but
normal according to both my endos. Where are you located? (state/country=
)=20
I’ll try to help you understand.=0D
=0D
Regards, =0D
Renee=0D
(an endocrine, kidney and heart disaster!)=0D
=0D
-------Original Message-------=0D
=0D
From: brennie=0D
Date: 12/31/2007 12:34:31 PM=0D
To: greyhoundlover@gmail.com=0D
Subject: Re: [addisons] overwhelmed=0D
=0D
thanks for replying. at least, you have given me some hope that this
could become manageable. my electrolytes are always too low----
potassium , magnesium, sodium, etc. i become really dehydrated,
even though i drink at least 8 glasses of water per day. i, also, drink
at least i liter of pedialyte per day. i am not as dizzy now that i am
taking 0.1 mg. of florinef per day as opposed to the 1/2 dosage.
do you have any idea why the brown spots have just started
appearing even though i was diagnosed last march?
the renal failure does really bother me. i do not want to do dialysis.
i guess we do what we have to with this disease, though.
i am anticipating that 2008 will be a much better year than 2007.
heaven knows that 2007 was hellashish!!!
hopefully you will have a better new year!!!
--------------Boundary-00=_E08ZCJD0000000000000
Content-Type: Text/Plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi Brennie, do you take extra salt, magnesium or potassium? (you have to=
be
VERY careful with potassium) Why the spots now…no idea! I seem go ge=
t
them in spurts. It sounds to me (and I’m NOT a doctor or in the medical
field) that you need to supplement particularly salt and magnesium and ha=
ve
your PCP take a look at where your potassium levels are. I pass a lot of
potassium in my urine so I take mammoth doses to keep up.=0D
=0D
I buy salt tablets for about $10 for 100. OTC magnesium and prescription
potassium. If you don’t have high BP my endo recommends 3-5 grams a day=
=2E=0D
=0D
Renee
--------------Boundary-00=_E08ZCJD0000000000000
Content-Type: Text/HTML;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
|
Hi Brennie, do you tak=
e extra salt, magnesium or potassium? (you have to be VERY careful =
with potassium) Why the spots now....no idea! I seem go get t=
hem in spurts. It sounds to me (and I'm NOT a doctor or in the medi=
cal field) that you need to supplement particularly salt and magnesium an=
d have your PCP take a look at where your potassium levels are. I p=
ass a lot of potassium in my urine so I take mammoth doses to keep up.
I buy salt tablets for=
about $10 for 100. OTC magnesium and prescription potassium. =
If you don't have high BP my endo recommends 3-5 grams a day.
Renee
|
||
|
|
Hi Renee,
I am new here, and just been reading your message with interest. Am I right in understanding that you take potassium supplements to boost your potassium so you can take more florinef? This is a problem I am struggling with as I feel I need more florinef to address my symptoms but my potassium is at the bottom of the normal range so doesn’t allow for it and my endo is really stuck as to know what to do. I have experimented with a little additional florinef for a couple of days and it really clears up my symptoms but then the low potassium symptoms kick in so I have to stop and go back to square one. I would be interested to know. I have looked up conditions associated with low potassium and don’t think they’re a possibility but am having my GP check everything anyway.
Thanks for your help,
Cheryl.
Hi Cheryl
I think you have sent this to me by accident - I am not Renee.
Kind regards
vanessa
----- Original Message -----
From: “Cherylb2450” addisons-cpt6667@lists.careplace.com
To: nessy@familyhughes.net
Sent: Wednesday, January 02, 2008 9:48 AM
Subject: Re: [addisons] overwhelmed
--------------Boundary-00=_DI01D9SFXFP000000000
Content-Type: Text/Plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi Cheryl, yes you are right basically. I take mammoth doses of potassiu=
m
because it passes in my urine and has done this even before I became prim=
ary
adrenal insufficient. From what I know fludrocortisone (the brand name
Florinef is no longer manufactured in the US) it does not correct
electrolyte problems but regulates what is already present to manage. I
take both potassium (K-DUR which is Rx) and salt. I’d suggest collecting=
a
24 hour urine to see if you’re passing it that way. I do have a number o=
f
secondary issues to hypokalemia that are managed and asymptomatic with my
huge dose I take daily. If I miss that dose then all hell breaks lose. =
I
take 80MEQ just to stay in the lower end of the normal range. This would
kill an otherwise healthy patient. Speaking as a patient I’d suggest
supplementing with something like “Stress Tabs” which have both salt and
potassium in them and see if that helps. If not ask the doc about a 24 h=
our
urine collection looking at what is there. I take straight salt tablets=20
(nothing but salt) and Rx potassium. Please remember you can have proble=
ms
with too little potassium AND too much which primary adrenal insufficient
patients tend to present with at a crisis. (I do not)=0D
=0D
Renee=0D
=0D
=0D
Hi Renee,=0D
=0D
I am new here, and just been reading your message with interest. Am I rig=
ht
in understanding that you take potassium supplements to boost your potass=
ium
so you can take more florinef? This is a problem I am struggling with as =
I
feel I need more florinef to address my symptoms but my potassium is at t=
he
bottom of the normal range so doesn’t allow for it and my endo is really
stuck as to know what to do. I have experimented with a little additional
florinef for a couple of days and it really clears up my symptoms but the=
n
the low potassium symptoms kick in so I have to stop and go back to squar=
e
one. I would be interested to know. I have looked up conditions associate=
d
with low potassium and don’t think they’re a possibility but am having my=
GP
check everything anyway.=0D
=0D
Thanks for your help,=0D
Cheryl.=0D
=0D
__=0D
To control the emails you receive from CarePlace, go to http://www.carepl=
ace.com/account-notifications
--------------Boundary-00=_DI01D9SFXFP000000000
Content-Type: Text/HTML;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
|
Hi Cheryl, yes you are=
right basically. I take mammoth doses of potassium because it pass=
es in my urine and has done this even before I became primary adrenal ins=
ufficient. From what I know fludrocortisone (the brand name Florine=
f is no longer manufactured in the US) it does not correct electrolyte pr=
oblems but regulates what is already present to manage. I=
take both potassium (K-DUR which is Rx) and salt. I'd suggest coll=
ecting a 24 hour urine to see if you're passing it that way. I do h=
ave a number of secondary issues to hypokalemia that are managed and asym=
ptomatic with my huge dose I take daily. If I miss that dose t=
hen all hell breaks lose. I take 80MEQ just to stay in the lower en=
d of the normal range. This would kill an otherwise healthy patient=
=2E Speaking as a patient I'd suggest supplementing with something =
like "Stress Tabs" which have both salt and potassium in them and see if =
that helps. If not ask the doc about a 24 hour urine collection loo=
king at what is there. I take straight salt tablets (nothing =
but salt) and Rx potassium. Please remember you can have problems w=
ith too little potassium AND too much which primary adrenal insufficient =
patients tend to present with at a crisis. (I do not)
Renee Hi Renee,
I am new here, and just been reading your message with interest. Am =
I right in understanding that you take potassium supplements to boost you=
r potassium so you can take more florinef? This is a problem I am struggl=
ing with as I feel I need more florinef to address my symptoms but my pot=
assium is at the bottom of the normal range so doesn't allow for it and m=
y endo is really stuck as to know what to do. I have experimented with a =
little additional florinef for a couple of days and it really clears up m=
y symptoms but then the low potassium symptoms kick in so I have to stop =
and go back to square one. I would be interested to know. I have looked u=
p conditions associated with low potassium and don't think they're a poss=
ibility but am having my GP check everything anyway.
Thanks for your help,
Cheryl.
__
To control the emails you receive from CarePlace, go to http://www.careplace.com/a=
ccount-notifications
|
||
|
|
I, too, take prescription potassium and magnesium. at times my levels
are too low and then they become extremely too high. it is , as i understand, dangerous either way. i seem to have a mid morning low.
i have found that if i drink a small amount of water with salt dissolved in
it that i do get recharged somewhat. i am careful what i eat, especially
at breakfast----mostly wholegrain items. also, i have a midafernoon low,
as well. i just know that i feel pretty rotten everyday.
kristiann - how old are you? my 8 year old was diagnosed with hypothyroidism on nov 30, 07 and addisions on dec 15, 07 -
Hi Renee
Thanks for your helpful reply. It’s a relief to know it is not totally uncommon to need potassium supplements in order to take extra fludro. I am aware that too much potassium is dangerous so I won’t do anything without working with my doctor. Your message clarified alot and gives me something to discuss with my endo to try to go forward. So many thanks. By the way, how much magnesium is recommended?
Best Wishes
Cheryl.
From what I understand, a lot of addisonians have polyglandular disease - hypothyroidism, etc. I don’t think my lytes have ever been normal (particularly my sodium as I hate to take Florinef because it blows me up), so I still use the salt shaker and take 1/2 pill at night with my prednisone. This has worked pretty well for me - but when I feel my blood pressure go down, I take another Florinef and that helps. I also take vitamin supplements as well as a potassium pill and a calcium with D pill.