I have empty sella and Hashi's. For some reason I'm unable to take HC, even at tiny doses, because it causes me to retain fluid. I was put on Medrol and at 4mgs and a thyroid med increase, I have crashed. My temps are not even raising to 98, my bp is lowish, I get chills then hot. My acne is back and my skin and hair have become oily. I'm lightheaded and having episodes of sweating. Before meds, My cortisol was 6 and ACTH 8.2 are low in the AM, the rest of the day and night, my cortisol was normal. 24 hr urine on the low side. Apparently I don't make enough to tolerate thyroid med raises and my iron is low too. I don't understand this. I have stayed hypo for 1.5 years but my my FT4 is low and FT3 is low mid range. Need to raise meds too.
Can someone tell me what is the usual medrol dose and how often. How long do I need to take it to feel an improvement. When to raise dose and how to tell if too much or to little, etc..
I would talk to a pharmacist. I looked on line, but all it said was medrol was usually used for allergies etc etc and hydrocortisone was used for AI - so I could not find a good reference.
Odd on the swelling - the amount of mineralcortisteroid in HC is teesny and you have low renin - which means you rather need salt and the mineralcorticosteroid action anyway... have you tried boosting salty fluids to get your BP up?
It does take a while to feel better - you took a while to get sick and it takes a bit to get everything back.
I will just stick to the twice a day dosing, until I find out more info.
I think the swelling on the HC is odd too. Pred caused swelling also. My BP was actually running too high, with spikes of 144/111!! I walked around for months, puffy all over, gaining weight and uncomfortable on HC and Pred,and since starting the Medrol, the bp is back to a more normal for me, 117/75, and I lost the weight gained. I guess that's not low. It would seem that I need the mineralcorticosteroid action, as you say, my sodium is 138, which is lower in range. Potassium and magnesium normal. If I add extra salt, I blow up and don't feel the urge to consume it very often. I do drink as much as I can, sometimes forcing myself to get more and then feel like I just can't choke down any more. Apparently, my body is telling me that, I'm retaining enough fluid.
The past couple days, I'm urinating in large amounts, often. Up all night, peeing and sweating/hot. The doc said my urine was not that dilute and the sodium was 138, last week. Went to the doc for this. It's possible I'm losing the fluid I've retained from low cortisol and thyroid or I have bouts of my ADH, acting up, maybe? The low Renin, doesn't concern the doc, since my Aldosterone was normal. My first morning blood glucose is 96-99. Maybe need the 3 month test for averages. One thing for sure is I'm not as swollen and uncomfortable as I was even a few days ago. i really think that I'm holding at least 10lbs of excess fluid, since when this started, I gained 11lbs in 8 days and it kept going up.
I think I will give the medrol some time, since I'm deflating, my joint and back pain, have stopped. I have been in horrible pain, for a long time. Apparently, I don't make enough cortisol, to function properly, even though my tests didn't look all that bad. If my body was working right, my cortisol would be high, considering the stress and pain. I know that you read/were told that a loss of Diurnal Rhythm, is Cushings. Most of my issues are the loss of rhythm, but the total output, low.
I'm still Anemic[the iron deficiency kind] after 3 mos of taking 4x the usual dose of iron, with vitamin c. This may be why I have trouble raising my thyroid meds. They are still to low.
Been very hard to accept replacing my almost normal cortisol, with a full replacement dose and becoming dependent on a steroid.
Could you please tell me how you dose your steroid and how you can tell if you need more or less? STTM, says to do average daily temps, starting 5 days after you start your meds. Tonight I feel weak and tired to the core. But it may be the anemia or low thyroid. I don't know how to tell.
Do you know if saliva cortisol testing is accurate after taking steroids. Medrol can last up to 3-4 days in the system and my last dose was 3mgs Thurs. did saliva testing on Sunday. My results were 6 in the AM, which the labs says is normal and highest at noon, then high for the rest of the day and bedtime. The lab says this is consistent with use of steroids, even though I didn't take any that day. I don't know if this means anything or not. Am I possibly on too much? My acne is back, but swelling better.
Thanks again for the help. I really do appreciate it!
Sadly, NO test is accurate for telling you if your steroid dose is accurate. I know my doc used to use 24 hour urine tests as the best *guess* but even that was not perfect. But a point in time test would not work well.
I dose so I can function, don't have a crisis every other day (or week). I also listen to my doctor and the tests run by them.
I am not a proponent of STTM or those beliefs. Sorry.
Acne is usually a sign of Cushing's - so it may be that you are on too much. If you look at a normal diurnal cycle, cortisol is lowering during the day so there is little cortisol when you sleep allowing the body to repair itself - hence why doctors (good ones anyway) usually don't have people dose at night - and why people with Cushing's (high cortisol) end up with cataracts, osteoporosis and muscle issues among other things. Long acting steroids carry side effects that while you may not see now - will be there later.
Thank you. So I would have to go by symptoms, only? I had acne flare ups before taking any steroid. And since my doc tells me nothing, I'm on my own. Are night sweats a symptom of low or high cortisol? I definitely don't want to be on too much. I'm starting to think my pituitary yo yo's. Are you on a long acting steroid? If so, how do you lower a dose if need be?
I used to be on HC - which is the preferred replacement. I was switched to dex as in my case, I have an active pituitary tumor that is secreting large amounts of ACTH and we are trying to get that under control. The tumor has steadily been increasing over the years.
As for symptoms, yes -to a great extent, that works and other tests like bone density, eye checks and see if other tests like sodium and potassium are in proper levels. Low sodium is an indication of too low replacement.
To lower a dose should be done with a doctor - and it should be done slowly and gradually. It is called weaning and can hurt. I know I did have some yo-yoing in my levels but I had a lot of problems in that some doctors don't think hormones can vary or cycle (er, periods?). I don't know about night sweats - that could be androgens?
I would find a doctor that gives you more guidance. They are out there.
Thanks. That tumor must be a horrible pain in the a....butt! So sorry that you have to go through this. It really makes my situation look small and I believe it's not as complex as my doc makes it out to be. But, for example, the lowish serum sodium and be that it just looks low, because of fluid retention.
Do you know if there is a test to show if a person is able to make enough ACTH, thus cortisol, in a stressful situation, like surgery or accidents etc..? I do have cortisol, the AM low, then high normal and not lowering at bedtime to allow me to sleep, total urine cortisol is lowish. How would a person know if they were at risk of an adrenal crisis? I can not get that answered. My doc says good question, and that's it!
Do you work with an endo, between visits to the Pituitary center?
How many doctors did you see before finding one that wasn't a total BOOB? I need a new doctor, I know
I am getting used to it - but yeah, I am a bit, er, complex. Everyone has their complications - it is not small when you have to live with it!
There is a stim test for the pituitary too - a CRH stim test. The ACTH stim test for the adrenal will tell you if the adrenal is functioning.
The crisis issue - low sodium is actually the risk. But it happens if you get sick, surgery, etc so it is not a daily thing. When I first got my adrenals out I used to get them with every low pressure system - rain! I had to keep a bucket in every room. I still keep one handy just less now. :)
I have a neuro-endo and he is far away so yeah, I have a local one - most of them were terrible but I actually found a decent one! It took me quite a while to get decent docs all around.
I really think I need that CRH stim test done. My doc should be doing all these things, but he has no sense of urgency to help me feel better. I have found out that I have, what appears to be iron deficiency anemia[by requesting that test too] which I have read, keeps thyroid meds from working. I have been taking 4x the RDA of iron, daily, or 3 mos. which brought my iron up 12 points, still low in range, but saturation is under range, not changed. Doc says that it looks like I can't absorb iron very well. I have asked for an IV and he never responds to that email. Do you know whether hypothyroidism causes anemia or the other way around? Also, apparently, low thyroid causes low cortisol, and I'm not on enough thyroid meds. Even if I raised, it wouldn't get to my cells. Ideas?
Sounds like a really frightening time that you had, glad to hear that isn't happening anymore. Low pressure systems..wow..the body is really complex and for the life of me, I don't see how anyone can get a balance with replacement hormones.
It is great that you found a decent endo in town. I wonder why they are so terrible. How many did you go through, before finding this one? Feeling really ill and doctor searching is awful!
Are the results of my saliva 4x cortisol test, then, not accurate, because I used Medrol 3 days before the test? Should I just disregard them? It shows AM, the usual low and the rest way too high. What is odd is that the numbers fluctuated in range, in a Diurnal rythm, but stayed too high and I wasn't taking anything at the time. I mean, the reading shot up at noon, and the lab said that must have been when I took the steroid and I did'nt. In 2011, before taking any meds, my noon reading was high in range, low in range AM. How is a lack of diurnal rythm treated? The 24 hr urine was on the low side, at 5 mgs HC. Ideas? I hope I didn't repeat myself..sort of thinking aloud, and typing it out, sorry.
You had said once, that taking your cortisol replacement at the wrong time, can cause the weight gain...which in my case is apparently edema. So maybe someone who has just the low AM cortisol, where to set an alarm and take the steroid, at the time they are lacking, they may see better results, maybe less side effects? That make sense to me. Would this work with a long acting steroid? I may want to try this again. I cannot fall asleep until after 2 AM and don't awake til after 11AM, with horrible restless sleep or I just literally pass out, sometimes around 6AM. Don't get first dose until 2 or 3 in the afternoon, because I can't choke down food until I'm up for 3 hours and the meds need to be taken with food or they tear up my stomach. Ideas on a better plan?
Have come to the conclusion that the only level of cortisol that is low is the AM and the rest are actually on the high side. This is based on 3 separate serums, PM's being in the middle or high end of the range, and then looking at the old saliva's before being on any meds I'm blown away by this and here my doc is giving me medrol! My sex hormone saliva's say, that my high cortisol and or low thyroid keeps the replacements from working at a cellular level. This would explain why at 3mgs medrol, my temps dropped and maybe why I swell on tiny amounts of HC, gain weight and tongue swelled and has stayed that way. Ideas/info on how this might be treated.
Set an alarm to take your meds. I take my dex at night - since it takes longer for a long acting med to kick in, it kicks in about morning so that works. People on pred I know used to do a 4am dose to get a nice wake up around 7 to 8. I don't know about medrol since it is not that common. Long acting meds are not used in emergencies since they don't kick in right away like HC - and people may absorb them faster or slower so it is hard to say without some experimentation. However with hormones, it does pay to be consistent. I put out all my meds in groups (that I formed with my doc and pharmacist) to make sure I don't have conflicts, say thyroid with calcium, and try to take the same way and same time every day. You will feel better that way.
If you have high cortisol the rest of the day - that is Cushing's. That is what I had and replacements are not needed - treatment is. Not everything you read on the internet is true - not even what I write!
When I spoke to my pharmacist (I suggest you talk to yours) and doc about having to eat with my cortisol, they both said the warning is for dosing that is far higher treatments and not for the replacement dosing that I am doing so I am fine. Please speak to your people for your case and get your meds managed for you.
My diagnosis of SAI was based only on low in range ACTH and cortisol, both in the AM and 1 MRI, bymy current doc. The other tests were from another doc 3 PM serums which are "normal" but don't drop at bedtime and saliva tests that I paid for say high, except in the AM. I have learned, that stim tests needed to be done, to prove high or low cortisol. There is a reason why I can't tolerate even a little bit of HC. I'm afraid that I should be on none of these steroids. Maybe high is wht I haven't slept much in 2 years and gained all this weight. What do they give to lower cortisol?
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