Aa
New guy with some questions
Doc diagnosed me approximately 2 +years ago as:
Adrenal insufficient.
Low thyroid
Anemic B12 and D
I was exhausted all the time, muscle weakness, strange muscle cramps, involuntary contortions of the hands, fingers (when i get up from a seated position my pinky, ring and middle fingers on left hand uncontrolably bend toward my wrist), confusion and terrible balance. That was over 2 years ago.
I had an MRI to check for MS which was negative.
I had an early morning blood draw to check adrenal levels that came back very low under the normal range.
I was then sent for a 2 hour cortisol test after which I was prescribed:
5 mg prednisone once a day
0.1 mg florinef (Fludrocortisone) once a day
Weekly B12 injection
50,000 units vitamin D once a week
Metformin and Lipator added just recently.
Iam still taking these medicines. I felt a great deal better for the first year but have slowly returned to the way I was before diagnosis.
I have never seen an endocrinologist which I think is odd. To be fair I have never suggested it but I think maybe it's time. I guess my question is, shouldn't I have been refered to one right off the bat?
I'm getting headaches a lot which I understand the florinef can cause. My hands, arms and face bruise incredibly easy. My cholesterol has gone way up, weight gain, bloating, blood sugar problems. I have read some of these meds could be responsible for the weight, cholesterol and blood sugar problems also.
Frankly, I'm getting scared. I'm being told this is all normal for what I'm taking. I don't buy it. Also, I'm being seen by the physicians assistant, not even the doctor from the office. Like I said, for the first year I was better. I just think its out of her hands now, maybe should have been from the start. Any thoughts?
Adrenal insufficient.
Low thyroid
Anemic B12 and D
I was exhausted all the time, muscle weakness, strange muscle cramps, involuntary contortions of the hands, fingers (when i get up from a seated position my pinky, ring and middle fingers on left hand uncontrolably bend toward my wrist), confusion and terrible balance. That was over 2 years ago.
I had an MRI to check for MS which was negative.
I had an early morning blood draw to check adrenal levels that came back very low under the normal range.
I was then sent for a 2 hour cortisol test after which I was prescribed:
5 mg prednisone once a day
0.1 mg florinef (Fludrocortisone) once a day
Weekly B12 injection
50,000 units vitamin D once a week
Metformin and Lipator added just recently.
Iam still taking these medicines. I felt a great deal better for the first year but have slowly returned to the way I was before diagnosis.
I have never seen an endocrinologist which I think is odd. To be fair I have never suggested it but I think maybe it's time. I guess my question is, shouldn't I have been refered to one right off the bat?
I'm getting headaches a lot which I understand the florinef can cause. My hands, arms and face bruise incredibly easy. My cholesterol has gone way up, weight gain, bloating, blood sugar problems. I have read some of these meds could be responsible for the weight, cholesterol and blood sugar problems also.
Frankly, I'm getting scared. I'm being told this is all normal for what I'm taking. I don't buy it. Also, I'm being seen by the physicians assistant, not even the doctor from the office. Like I said, for the first year I was better. I just think its out of her hands now, maybe should have been from the start. Any thoughts?
I don't know your tests...
Just some random info that may or may not be helpful - pred, if used as a replacement for AI, is usually given as 5mg as that roughly equates to 20mg HC. I say roughly as pred last longer and doses stack and you cannot imitate a normal body in the ups and downs of cortisol. 1mg is... to me, an odd replacement but I am not a doctor nor have I seen your tests. There are corticosteroid calculators out there that you can compare. I use them. I hope you know that tapering hurts like heck. Sorry.
Florinef is a powerful powerful medication - if you need it, it is wonderful. It should, IMHO, be tapered up and down as for one silly little tiny pill, it can whop you down and give you what I call the florinef fluffies - hence the weight gain etc. But not everyone needs it. You need to know your aldostorone, renin, sodium and potassium readings. If you don't need it, it can really mess you up.
Depo is simply evil LOL... that med messed me up something mad.
It will be interesting to see what is going on - but you have to get copies, and you have a lot of meds to get out of your system too.
Just some random info that may or may not be helpful - pred, if used as a replacement for AI, is usually given as 5mg as that roughly equates to 20mg HC. I say roughly as pred last longer and doses stack and you cannot imitate a normal body in the ups and downs of cortisol. 1mg is... to me, an odd replacement but I am not a doctor nor have I seen your tests. There are corticosteroid calculators out there that you can compare. I use them. I hope you know that tapering hurts like heck. Sorry.
Florinef is a powerful powerful medication - if you need it, it is wonderful. It should, IMHO, be tapered up and down as for one silly little tiny pill, it can whop you down and give you what I call the florinef fluffies - hence the weight gain etc. But not everyone needs it. You need to know your aldostorone, renin, sodium and potassium readings. If you don't need it, it can really mess you up.
Depo is simply evil LOL... that med messed me up something mad.
It will be interesting to see what is going on - but you have to get copies, and you have a lot of meds to get out of your system too.
Also, Endo said all these mis prescribed meds have my brain out of whack. Also said some of the problems I'm having were caused by the meds, most will get better but never go away completely. Awesome.
Well, had first visit with Endo. Good guy, knew patients by name, spent over an hour with me. Looked at old blood work and the list of meds I'm on for 15-20 minutes, shaking his head and saying "oh boy". So, here's what he said in a nutshell:
He's not surprised I feel bad.
5mg prednisone a day is too much, tapering by half mg a month down to 1mg
Not taking enough synthroid, says that was obvious from my second blood test 1 1/2 years ago. Now taking same mg but 3 extra pills a week.
Stop monthly 80mg Depomedro injections
Stop taking florineff, said he can't see a reason doc put me on it in the first place.
He flat out told me that the other doc did me more harm than good. His exact words. Blood work in 2 weeks, he said it won't tell us much but just to see if we are headed in the right direction. Also testing for a bunch of hormone levels, Testosterone etc. See him the following week to go over results etc. he said I can feel much, much better. Which, I already do. My walking is improved a great deal and I'm not exhausted at the middle of the day. I know there will be ups and downs along the way, Endo said there would be. At least I feel like we're headed in a positive direction now.
He's not surprised I feel bad.
5mg prednisone a day is too much, tapering by half mg a month down to 1mg
Not taking enough synthroid, says that was obvious from my second blood test 1 1/2 years ago. Now taking same mg but 3 extra pills a week.
Stop monthly 80mg Depomedro injections
Stop taking florineff, said he can't see a reason doc put me on it in the first place.
He flat out told me that the other doc did me more harm than good. His exact words. Blood work in 2 weeks, he said it won't tell us much but just to see if we are headed in the right direction. Also testing for a bunch of hormone levels, Testosterone etc. See him the following week to go over results etc. he said I can feel much, much better. Which, I already do. My walking is improved a great deal and I'm not exhausted at the middle of the day. I know there will be ups and downs along the way, Endo said there would be. At least I feel like we're headed in a positive direction now.
Got refered to a Dr Salman A. Khoury in Southgate Michigan. Anyway I can check him out before I make an appointment? I'm pretty sure I can pick whoever I want. I need a good one.
I hope you get a decent endo. It helps to get copies of your labs. I cannot tell you how many times I was told I was ok, only to get my labs and find I was off - and others share that experience.
Some things are ok a bit off - but some things need attention. Keep us posted.
Some things are ok a bit off - but some things need attention. Keep us posted.
I take B12 and D every week. I seriously don't know or don't have any of the other things you mentioned. I'm just sick of being being sick.
What are your sodium and potassium readings? DId you have low blood pressure? You may not need the fludrocortisone -aka florinef - and you are getting water weight. It is a little pill and can cause havoc if mis-used. And you have to taper up to take it as your body has to get used to it. You may want to talk to your doc about cutting back to half a pill for a while - and look at your tests for why you have it.
Pred is long acting BUT it also takes a while for it to *kick* in - hence why it is not used in emergencies (I hope your doc gave you HC to stress dose, and an emergency shot as well as guidance on a medic alert bracelet etc!!!). So for instance when I take dex, I take it the NIGHT before so I can wake up. Pred is iffy as it clocks you a couple of hours after you take it - so I know people used to wake up at 4am to take it and wake up at 7-8am.
I would also make sure you have enough vit. D (D3 is great) too as a lot of us have low D. I have to take D and B12.
That is sad about the car... I know I have *forced naps* but so far not in the car.
Are you salting your food? Do you crave salt?
Pred is long acting BUT it also takes a while for it to *kick* in - hence why it is not used in emergencies (I hope your doc gave you HC to stress dose, and an emergency shot as well as guidance on a medic alert bracelet etc!!!). So for instance when I take dex, I take it the NIGHT before so I can wake up. Pred is iffy as it clocks you a couple of hours after you take it - so I know people used to wake up at 4am to take it and wake up at 7-8am.
I would also make sure you have enough vit. D (D3 is great) too as a lot of us have low D. I have to take D and B12.
That is sad about the car... I know I have *forced naps* but so far not in the car.
Are you salting your food? Do you crave salt?
So, yesterday. I have loud alarms on my iPhone , lots of them. One goes off every 10 minutes from 4:15am until 5:30am. I also have one of those giant old alarm clocks with the 2 big bells on the top that you can hear at the neighbors house that goes off at 5am. Yeah, so I wake up around 6:25 already late for work. Slept through all of them. I called in and took a personal day since I had to go for my B12 injection and wanted to see the doc anyway about being refered to an Endo. I felt like crap and really wasn't walking good anyway. Got to the docs around 12pm, got injection but doc was too busy to squeeze me in so I made an appointment for next tuesday and left.
Got home around 12:40pm. I pulled my car into the backyard up by my garage in the middle of the driveway. Opened the car door, put a foot out onto the concrete and thought about how much I wasn't looking forward to the walk to the house, all of 20 feet.
Then I woke up. It was 4:15pm. I had slept, half out of the car with the door open for over 3 hours. It had rained while I was out so my leg, shoe and sock were soaked as was the inside of the car door.
And no one noticed.
Got home around 12:40pm. I pulled my car into the backyard up by my garage in the middle of the driveway. Opened the car door, put a foot out onto the concrete and thought about how much I wasn't looking forward to the walk to the house, all of 20 feet.
Then I woke up. It was 4:15pm. I had slept, half out of the car with the door open for over 3 hours. It had rained while I was out so my leg, shoe and sock were soaked as was the inside of the car door.
And no one noticed.
First thing in the morning. Started out taking 10mg in the am but at first it made me really grouchy and I wasn't getting out of the house much. Told the doc and she cut it to 5mg and added the fludricortisone. That's when all the weight gain started and slowly I've started to go backwards in the way I feel. I have enough energy to go to work but after that I'm exhausted. That's not living to me. I raise a 16 year old daughter by my self and we'd like to go places and do things. I'm scared, pissed off and not happy at all with the way things are.
Thanks LowC...
It helps to get copies of everything. Believe me - we have ALL been in your boat - no one starts out knowing anything!!! But only as we understand that gee, maybe it should or could be different do we start to investigate. My journey to diagnosis took over 10 years as doctors are completely ignorant not only of the diseases, but testing, lab error and just that not all patients fit the rigid box that they learn in the one hour they may get in medical school. Even the endos may or may not be on top of the rarer diseases - many of us are told that you cannot have x or y - like there is a quota.
You are on prednisone - and pred lasts a long time - that in of itself can turn around and cause nasty side effects like steroid induced Cushing's syndrome. Symptoms of low and high cortisol overlap (I was first diagnosed with Cushing's and had my adrenals removed to resolve it after pituitary surgery failed) so I know how this is. Normally, one used hydrocortisone as a replacement so you can mimic a normal, healthy body. You cannot do that with long acting steroids. It is easy with pred to take it once a day, but it is much harder on the body in the long run. So you also have to learn about the replacements and the pros and cons.
How much pred do you take and when?
It helps to get copies of everything. Believe me - we have ALL been in your boat - no one starts out knowing anything!!! But only as we understand that gee, maybe it should or could be different do we start to investigate. My journey to diagnosis took over 10 years as doctors are completely ignorant not only of the diseases, but testing, lab error and just that not all patients fit the rigid box that they learn in the one hour they may get in medical school. Even the endos may or may not be on top of the rarer diseases - many of us are told that you cannot have x or y - like there is a quota.
You are on prednisone - and pred lasts a long time - that in of itself can turn around and cause nasty side effects like steroid induced Cushing's syndrome. Symptoms of low and high cortisol overlap (I was first diagnosed with Cushing's and had my adrenals removed to resolve it after pituitary surgery failed) so I know how this is. Normally, one used hydrocortisone as a replacement so you can mimic a normal, healthy body. You cannot do that with long acting steroids. It is easy with pred to take it once a day, but it is much harder on the body in the long run. So you also have to learn about the replacements and the pros and cons.
How much pred do you take and when?
1. The contrast that Rumpled refers to occurs midway thru (ideally) a pituitary protocol MRI. You're placed in a MRI machine that takes several pictures. Before this starts a canula is inserted into the upper side of your hand.
At some point, the MRI scanner is stopped, a nurse enters the room and injects you (thru the canula) with a dye, leaves the room and the MRI machine starts taking pictures again. If a dye was not injected into you in that manner then you did not have the MRI with contrast that you should have.
2. You need an endo to study your overall hormonal situation. An you need him or her now. A regular doctor is not enough. And a nurse or nurse practitioner is not enough.
3. As I mentioned and as Rumpled confirmed, a skilled neurologist or neurosurgeon can review the same images a general radiologist reviewsand come up with an entirely different conclusion.
At some point, the MRI scanner is stopped, a nurse enters the room and injects you (thru the canula) with a dye, leaves the room and the MRI machine starts taking pictures again. If a dye was not injected into you in that manner then you did not have the MRI with contrast that you should have.
2. You need an endo to study your overall hormonal situation. An you need him or her now. A regular doctor is not enough. And a nurse or nurse practitioner is not enough.
3. As I mentioned and as Rumpled confirmed, a skilled neurologist or neurosurgeon can review the same images a general radiologist reviewsand come up with an entirely different conclusion.
I had 1 blood draw to check adrenal levels at 7:30 am over a year and a half ago. Those results came back low so I was sent for a 2 hour cortisol test after that. Been on these meds ever since. Not sure what you mean by contrast on the MRI. They put me in, scanned my head and I was done. Someone, somewhere read the results and sent them to my doc, who said it was clean.
But that's my point, I don't know enough about these things and I'm afraid neither does my current doctor. I do know that this combined lack of knowledge makes me feel that I should be seeing and endocrinologist before something really bad happens. I have good health insurance and to not take advantage out it seems dumb to me.
But that's my point, I don't know enough about these things and I'm afraid neither does my current doctor. I do know that this combined lack of knowledge makes me feel that I should be seeing and endocrinologist before something really bad happens. I have good health insurance and to not take advantage out it seems dumb to me.
You should see an endo.
Do you have copies of your blood work? Is your source pituitary or adrenal? You may have other hormones that are off - like growth hormone, thyroid or other.
You should also get another opinion on the MRI - was it a dynamic pituitary MRI? Did you get contrast and were you given the contrast while images were taken? If yes, you had a proper MRI. If you were taken out of the machine to get contrast, your MRI was not the proper protocol to find smaller lesions. You can find surgeons, like the expert here, who will review your films for free and they can often find more than the radiologists who sadly, are not used to finding pituitary lesions.
When you get testing - do you go at 8am fasting?
Do you have copies of your blood work? Is your source pituitary or adrenal? You may have other hormones that are off - like growth hormone, thyroid or other.
You should also get another opinion on the MRI - was it a dynamic pituitary MRI? Did you get contrast and were you given the contrast while images were taken? If yes, you had a proper MRI. If you were taken out of the machine to get contrast, your MRI was not the proper protocol to find smaller lesions. You can find surgeons, like the expert here, who will review your films for free and they can often find more than the radiologists who sadly, are not used to finding pituitary lesions.
When you get testing - do you go at 8am fasting?
I'm really not sure what the results were, but I'm still on it. Blood work 3 weeks ago and got a new script for it.
My MRI was reviewed by people at the hospital I had it done at.
My doctor isn't really a full fledged doctor she's a physicians assistant sort of doctor. When I started to feel better I figured she was on the right track so stayed with her. I just think its beyond her abilities now and I should see an Endo.
My MRI was reviewed by people at the hospital I had it done at.
My doctor isn't really a full fledged doctor she's a physicians assistant sort of doctor. When I started to feel better I figured she was on the right track so stayed with her. I just think its beyond her abilities now and I should see an Endo.
With a diagnosis of AI coupled with tiredness and a prescription for prednisone I think you must be under the care of a good endocrinologist. Also the person who said you don't have MS was what? A skilled neurologist or a GP (Australia) or PCP (US)?
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