Not losing, overseen by docs. Any advice welcome.

russkiballerina
russkiballerina Posts: 53 Member
edited November 7 in Health and Weight Loss
Hey guys. So my story is a bit more complicated than usual. I am on steroids (hydrocortisone) and a bunch of other meds (you can see them on my food diary), but I have been adhering strictly to the regimemy docs put me on (both for the adrenal insufficiency and my blood disorder), my docs have access to the diary here (and I see my docs often - my hematologist twice a week) - I exercise almost daily (not back to my normal routine yet because I haven't been out of the ICU for even three weeks yet (I had an adrenal crisis) but I have been consistent despite one or two slips (you might notice on my diary Saturday I had some pub food (my home country was playing, could not not have it :P, but I finished the day under 1200) and on Sunday I hiked 5hrs so I did up my intake to I think 1300 to over-compensate, but it wasn't anything unhealthy.

Now my intake is pretty low - I normally can't eat much because I have stomach issues related to absorption (thanks to warfarin) and the specific diet I follow that is also outside of the regular MFP usual macro breakdown most people follow. I danced ballet for almost 20yrs and when I do workout that is what I mostly will do, for about 90min (I break it down in barre and actual dancing). I generally don't weight lift because I am scared of injury, and being on blood thinners it is a bit scary to me - but sometimes I do, though I am a beginner. I also swim about twice a week and cycle for about one hour on sat and sundays - the hikes I reserve for when I go upstate, and they are generally over 8hrs long, sometimes the entire weekend (love camping and etc). Well, used to be. I am now taking it easy and have to take solu-cortef (hydrocortisone, injec) with me in case of emergencies. I also have to take extra HC before the hike. Which is a pain, but I'm used to it.

The hydrocortisone hasn't really affected me as much as I thought it would. I left the hospital at 67.7kg (mostly water, I lost 7kg in one week afterwards), entered it at 54kg. I am about 1,71cm, 1,72cm. It is an unusual weight for me - before being diagnosed with adrenal insufficiency (hypopituitarism), I maintained my weight at about 45-48kg naturally, and my doctor isn't opposed to me getting back there (though she'd prefer me being at 50-55kg if I am okay with it) if I do it while dancing and eating at my caloric limit and don't restrict to insane amounts (in my case that would be 400-600, as I had an ED in the past that led to cardiac complications and that would likely be a horrible idea and kill me)

What scares me is that, as you can see in my photos (the last two I posted, I believe), my weight has stayed the same for the past two weeks (56kg), but my body is insanely different - I have completely lost all my muscle definition, out of nowhere. There are fat deposits where my thighs used to be, my stomach is, I don't know, pushed out as if I were pregnant. My arms have deposits in them, there is just no definitions, only my calves are still defined. I am at a loss at what could be causing this, as my exercise regimen has only increased in intensity and I don't see anything bad that I have been eating, necessarily? Yesterday night was pretty depressing for me because of this and I don't really know what to do, I don't want to relapse full on on the ED as I know it would kill me in a heartbeat because my pituitary simply does not work and I don't produce cortisol. Two weeks of restricting heavily would put me in the ICU again, but I understand that if this keeps going (and I have told my doc), my brain will defy logic and that's exactly where I will wind up, and I don't want to do this to myself, I really don't want to.

So, if there's anyone out there who has dealt with something similar or has any tips or could look at my diary or I don't know, has any words of encouragement, I would really appreciate it. :)

PS: It's still noon and I haven't completed today's intake yet - this is just a rough draft of what I intend on eating today, I will eventually add more food, I just don't know what my bf will be cooking tonight.

Replies

  • itsbasschick
    itsbasschick Posts: 1,584 Member
    you're not eating enough calories AND you're not getting enough protein. and some days, you don't eat for long periods of time. all of these things can contribute to muscle loss. protein is what builds muscle, and if you don't get enough calories, your body may autolyze your muscles if it needs more calories.

    have you talked to your doctors about these developments?
  • Unknown
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  • russkiballerina
    russkiballerina Posts: 53 Member
    Both my endocrinologist and my hematologist have access to the diary here. They are totally okay with my intake (I don't eat leafy greens because of the thinners and I don't eat higher protein because of warfarin absorption - hematologist orders - I get what's recommended by him and if I go over my INR drops and warfarin increases, together with liver toxicity, which is defo something I don't want...I went from 5mg daily to 10-12.5mg. Warfarin is rat poison...it isn't worth it and it becomes dangerous to go up this high for more than one month or so)

    I do see them every week, actually (in between docs, hem twice a week, endo once a month, neprho once every three, gp once a month, cardio once every three, etc). Baffles me that this stuff is happening and it doesn't really seem to baffle them in the slightest. Really the endocrinologist says it's "to be expected" and that I shouldn't be sad about it because it's just the "way things go when you are on steroids", but what I don't think she gets is that all these things can trigger my ED pretty seriously. I mean, I had my psych try and call her, and see how that goes. The hematologist won't budge, and I understand why - increasing the amount of leafy greens can be disastrous for my INR and absorption of warfarin is crucial so I don't get blood clots (I made the mistake of eating too much protein, trying to increase protein by eating more nuts/meat/leafy greens and decreasing carbs - landed right back in the Telemetry/Cardiac floor in the hospital, not only in adrenal crisis but also with an INR of 0.9 and that's why I'm on lovenox shots right now in addition to the warfarin, so it's complicated stuff)

    That's why I said that the macro breakdown I need is a little different than most people's. I need a considerable lower amount of protein because of absorption issues over blood thinners and my stomach and lower salt because of the steroids but not so much because of the incredibly low blood pressure (even on hydrocortisone if I'm not careful with intake it will go as low as low 80s range, if I go to an appointment and it's mid 70s, they don't let me go home, so I need to maintain on the mid 90s-100s/60s minimum to be allowed to go home, and hemoglobin at least 9 so they will let me leave (and it's not caused by low iron or b12, those levels are normal)

    I'm eating at low cal, but that's been cleared by the endocrinologist and hematologist, they said as long as I don't tip below 1000 (or 1200 on days I work out) it's fine by them. What is really triggering me is the fat deposits and changes that they say are normal "because side effects" and "there's nothing you can do" - I have to take those pills for life. My kidney doc discontinued my sodium bicarb after my chloride and CO2 went back to normal because he was afraid it would trigger stuff and warned the endo so she would maybe talk about a dietitian to accompany me to increase cals without offsetting the INR/absorption/warfarin and increasing exercise but I guess that went over her head, and now I have absolutely zero idea of what to do and I am truly miserable.

    Thanks for replying.
  • Jille0
    Jille0 Posts: 62 Member
    @astyxx I also have panhypopituitarism and take a lot of medication to compensate. Have you been tested for growth hormone deficiency? Being growth hormone deficient can cause issues with change of lean body mass to fat deposits. I know you posted this a while ago, but just saw it today.
  • misskarne
    misskarne Posts: 1,765 Member
    56kg at 172cm is EXTREMELY light and I would be stunned and questioning the credentials of a doctor who would encourage you to drop to 48kg. That is massively underweight.

    A healthy range for your height is 55kg-75kg, so as you can see, you are already at the low end of that.

    You need a therapist as well as the other doctors.
  • pollypocket1021
    pollypocket1021 Posts: 533 Member
    Sounds like these particular body changes are expected in your case. I would ask your doctors to better explain likely side effects and the course they anticipate your case will take. Maybe more insight into the condition, medications, and side effects will make them easier to cope with.
  • BlueSkyShoal
    BlueSkyShoal Posts: 325 Member
    It sounds like it's the medication itself that's causing the change, then? I really, really, REALLY would suggest that you continue to talk to your medical professionals and get advice from them, rather than from people on the internet.

    Not that we don't want to help, but we aren't really qualified.
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