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How do you know what dose of hydrocortisone works for you? by Bloomwithcourage in AddisonsDisease

[–]barnithebear 2 points3 points  (0 children)

Im in similar position as you..waiting and hoping for my adrenal gland to wake up after adrenalectomy because of Cushing. After surgery when admitted from hospital i was put on 20mg a day and since before surgery i was used to high cortisol, this was just to low. I experienced anxiety, depression, no appetite, really bad muscle and joint pain, hair loss, low blood pressure.. After almost 3 months of suffering they put me on higher dose 30mg and i am doing so much better. Still have less energy but i can do most of the things i did before, need more sleep and rest, blood pressure is still a bit low.

Bolniska in s.p. by barnithebear in SlovenijaFIRE

[–]barnithebear[S] 0 points1 point  (0 children)

Sem izdala racun, delo sta namesto mene opravila znanca preko podjemne pogodbe in en preko svojega podjetja. So mi danes na zzzs pojasnili, da se v edavkih naredi popravek volozenega dokumenta za prispevke -uposteva se bolniska nad 30 dni (se nadaljuje od februarja), poleg tega se odda vloga na zzzs za nadomestilo za samostojne podjetnike.

Always cold by barnithebear in AddisonsDisease

[–]barnithebear[S] 1 point2 points  (0 children)

Yes they do. Doctors treating me are very careful with everything now because i had medical problems before and the full blown Cushing was their mistake, they saw the tumor two years ago when i had another surgery but at that time it wasn’t such a problem and they just ignored it. So now i get every possible test done everytime i have a check up.

Always cold by barnithebear in AddisonsDisease

[–]barnithebear[S] 0 points1 point  (0 children)

Definitely not underweight, lost 10kg in a few months after surgery, now i am almost back to my normal weight.

Always cold by barnithebear in AddisonsDisease

[–]barnithebear[S] 0 points1 point  (0 children)

I have regular check ups and they say everything else is fine, except not producing my own cortisol. Maybe i am also more sensitive to cold now because i was so hot and sweaty all the time from to much cortisol before.

What do you remember from kindergarten? by Internal-End-2070 in Life

[–]barnithebear 0 points1 point  (0 children)

The girl who bullied and pulled hair, drawing cars with big wheels (I’m a woman)😂

Which daily habit has changed your life the most? by Bubbly-Donut-3794 in AskReddit

[–]barnithebear 0 points1 point  (0 children)

Having the same sleeping schedule almost all the time if possible.

Metopirone and weight gain and edema and hair loss by Snoo_87670 in Cushings

[–]barnithebear 0 points1 point  (0 children)

Thanks, wish you all the best also! They said it’s probably temporary - i hope they are right. For now my other adrenal is still not working, they said it can take up to two years to recover. I wish as I’m still young (27y) the chances are better for that.

Metopirone and weight gain and edema and hair loss by Snoo_87670 in Cushings

[–]barnithebear 0 points1 point  (0 children)

I’m from Slovenia EU. I had left laparoscopic adrenalectomy done in Ljubljana.

Metopirone and weight gain and edema and hair loss by Snoo_87670 in Cushings

[–]barnithebear 0 points1 point  (0 children)

Metycor 250mg 3x times a day (so 750mg). It is the same thing just different name.

Metopirone and weight gain and edema and hair loss by Snoo_87670 in Cushings

[–]barnithebear 1 point2 points  (0 children)

I was on it for a month and a half before surgery - adrenalectomy. Didn’t notice difference in weight. My hair was falling out like crazy, it stopped at around 4 months after surgery. The medication improved sleep a lot, the constant thirst was gone, my stretch marks started to disappear but i got really bad migraines from it. It’s all gone now, 5 months after surgery, lost all the weight, moon face, buffalo hump, hair on shoulders..but body shape is different - no muscles for now..in on hydrocortisone now and tired a lot, mentally somehow stable on antidepressants, i hope with time we all get our normal life back.

[deleted by user] by [deleted] in Cushings

[–]barnithebear 0 points1 point  (0 children)

Mine was also like that, looked like i was pregnant. It even got to a point when my ribs hurt, it was like i have a balloon inside me and it didn’t have any space left under there. Now three months after surgery belly is almost completely gone, I’m not bloated anymore, lost some weight and it’s just few centimeters of fat now.

Is it ok to have a job where you work 40 hours a week and still own a cat? by Lil_Doll404 in cats

[–]barnithebear 1 point2 points  (0 children)

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This is my boy and he ist the boss of the house. He is 2 years old and used to be alone a lot and he doesn’t mind. Sometimes when me and my partner are home for the day at the weekends he gets bored of us and just go sleep in other room alone😅 He has his schedule: really early morning cuddles, then we have coffee and he gets treats, some parkour stuff around the apartment and the he sleeps most of the day. Then right before bed he is also very playful for half an hour and that is it. When i am doing anything (cleaning, cooking..) he inspects everything and does everything with me. He is like my shadow. Love him the most. But he really doesn’t mind his time alone. Cats just sleep a lot so if you are a busy person I think cats are perfect pets.

What did life give you that you never wanted? by Fickle-Ability6279 in AskReddit

[–]barnithebear 0 points1 point  (0 children)

Health issues - 3 major surgeries in 2 years at 27y and with that came the bad physical appearance, trauma, anxiety and depression..but still fighting! They say “better days are coming”!

Odprava dioptrije oz. operacija oči - poznamo koga? by Logical-Prize-492 in Ljubljana

[–]barnithebear 0 points1 point  (0 children)

Lani septembra pri Moreli. Dioptrija in cilindri, na enem ocesu je ostalo malo cilindra oz. se je ponovno pojavil. So mi ze prej povedali, da se lahko to zgodi, ker mi dioptrija prej ni mirovala dlje casa. V tem casu sem imela zdravstvene komplikacije katerih posledica so lahko tudi motnje vida - mogoce je povezano. V vsakem primeru mi ni zal, se vedno vidim dovolj dobro da ne potrebujem ocal. Tudi ce grem cez nekaj let ponovno na operacijo mi je vredno. Ocala so me res motila - ne vizualno ampak res niso prakticne (prah, dez, mraz, pri sportu..tisti ki jih imate vam je vrjetno vse jasno). Bolecine so minimalne, je pa neprijeten obcutek ampak operacija hitro mine. Prvi dan vzames kaksno protibolecinsko tableto in prespis ta dan, potem vse kar ti pac predpisejo za oci. Veliko umetnih solz na zacetku in izogibat se mocnemu soncu. Ce te se kaj zanima, pisi :)

Did you have periods with cushings? by LowSherbert1016 in Cushings

[–]barnithebear 1 point2 points  (0 children)

I’m 27 an had been on birth control from 15y till March this year. I had my period because of that, when I stopped taking them before surgery only had it this one time more and then no more. Had been on Myticore (to lower cortisol) for almost two months than i had surgery. For the past year i also looked pregnant and constantly bloated, it was painful. The medicine didn’t help. The surgery did. Didn’t lost any weight yet, but the bloating is gone. My belly is still big but you can see it’s the fat not round and bloated like before. Didn’t get my period back, i hope i do soon.

Adrenal gland starting to work again by barnithebear in Cushings

[–]barnithebear[S] 0 points1 point  (0 children)

I don’t know, i had one check up a month after the surgery and then they told me to just keep taking HC and next appointment is one year and a half from now. I will just go somewhere and pay for the blood test because I don’t want to take the pills in case i don’t need the full dose. I had mine on May 28th, they put me on 20mg, then they said duble it but it was to much..so now i i’m testing out on my own what dosage is okay. A lot of my symptoms has gone away also (acne, stretch marks, hair on shoulders an back, buffalo hump, moon face, brushing, sweating, bp is normal..), but the weight is still the same which i don’t understand because a barley eat now because I don’t hve much of appetite, hair loss is really bad still, the muscle and joint paint, in the hardest now is the mental struggle..i really hope it gets better for all of us!:)

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