Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My potassium levels have been low for 4 months. The infusion center gives me two bags of potassium with my IVIG (I get it in two days, one bag of potassium followed by one bag of IVIG each day).
They do a CBC at the beginning of the second day (before they start my infusions of potassium and IVIG).
Yesterday, my potassium was at a 2.9 (this is after having an infusion of it the day before). Because the additional 2 hour potassium infusion would have me sitting there for 9 hours instead of 7, they discussed running another IV and giving me the third bag at the same time as my IVIG. I asked if I could just come back for the 2 hour potassium and they said they could not let me go home until the levels were up higher. So I got the third bag yesterday.
They drew my blood again after the third potassium and levels were up to 4.5, so I was allowed to leave after the IVIG. They also checked my magnesium level and it was normal.
I asked the nurse how low my levels must have been before the first day and he replied "I imagine you were tanked."
My chloride levels are high so they are wondering why my body seems to be absorbing the chloride and not the potassium.
I take prescribed potassium (chloride and citrate... I have both now) at home and have prescribed potassium chloride powder (yucky stuff) for the days I can't swallow those pills. I have been drinking spinach, banana, yogurt and pineapple smoothies.
I do not have issues with "fluid loss" that can lead to low potassium. I am only taking 15mg prednisone daily now, along with mestinon.
Any ideas on WHY this is an issue for me or HOW I can get my body to absorb potassium better would be greatly appreciated.
They do a CBC at the beginning of the second day (before they start my infusions of potassium and IVIG).
Yesterday, my potassium was at a 2.9 (this is after having an infusion of it the day before). Because the additional 2 hour potassium infusion would have me sitting there for 9 hours instead of 7, they discussed running another IV and giving me the third bag at the same time as my IVIG. I asked if I could just come back for the 2 hour potassium and they said they could not let me go home until the levels were up higher. So I got the third bag yesterday.
They drew my blood again after the third potassium and levels were up to 4.5, so I was allowed to leave after the IVIG. They also checked my magnesium level and it was normal.
I asked the nurse how low my levels must have been before the first day and he replied "I imagine you were tanked."
My chloride levels are high so they are wondering why my body seems to be absorbing the chloride and not the potassium.
I take prescribed potassium (chloride and citrate... I have both now) at home and have prescribed potassium chloride powder (yucky stuff) for the days I can't swallow those pills. I have been drinking spinach, banana, yogurt and pineapple smoothies.
I do not have issues with "fluid loss" that can lead to low potassium. I am only taking 15mg prednisone daily now, along with mestinon.
Any ideas on WHY this is an issue for me or HOW I can get my body to absorb potassium better would be greatly appreciated.
I have 2 bananas a day...maybe that helpsThat is all I know. Sounds like you are doing well otherwise.
Ann
Doctors are taught very little about normal metabolism and diet and seldom have time to take a detailed dietary history. All the electrolytes are related and a deficiency in one can cause deficiency in others and blood levels may not be telling the whole story. You might ask for a consultation with a dietician. Keep a food journal (and don't cheat!:-) ) to take with you. Be sure to include what you drink as well as what you eat, and let us know how it goes! You might even need a bit more magnesium! love ya, b.
They had her on a potassium sparing diuretic and up to 100 milliequivalents of potassium a day at one point she was losing so much potassium! But the key was the sodium to potassium balance and she needed a lot more sodium which was weird and unusual to prescribe but it worked and now she is off of everything and eats a high potassium (coconut milk, bananas, carrot juice?) and high sodium diet and feels totally back to normal. She had no energy, palpitations, chest pains, dizziness, etc.
The difference is she was having fluid loss in her case so I am not sure how much of this would apply to you but they should definitely be checking your sodium.
I hope you get better soon...debra
hugs,
sherry
My sodium (Na) was 142 normal is (what I found) 136-145
But my blood pressure does usually run a bit on the lower side.
I have not tried coconut milk yet and saw on another post that V8 (which I love) had a lot of potassium in it so I will get to the store for those things tomorrow! I will write down the potassium rich foods I eat ... that will make me more aware of how much I am really getting.
I am just hoping it will work itself out soon with the decrease in the prednisone, I really have no idea what else could be causing this issue.
Thank you again my friends!
Love, Becca
I think you commented once that you have IBS. This could be causing or aggravating problems with your potassium. You might ask your PCP whether a dietician or endocrinologist would be better to address your problem, but I agree it is not something to ignore. b.
I used to have problems with IBS. But after my gallbladder was removed and I started Mestinon I have almost non of those issues anymore (it has been almost a year since I have taken an immodium AD... something I used to take a lot of).
I will call and see if I can get a referral to a specialist. In the past I was told that it may just be a side effect from the prednisone, but I would think that should be working itself out now that I have tapered down... but it seems to be getting worse.
Becca
He ordered some other blood tests that day too. I am still gaining weight even though I have been tapering prednisone and have been taking 15mg daily for over a month now. I still have moon face. I get extra puffy a lot.
There are a few lows and highs including:
My protein level (9) is a little high now too (it has been going up a point a month).
My cortisol level was a 3.4... with normal for this test being 2-23
The Doctor's assistant called me this morning and said everything looked "fine" I told her I found the test results online and to go remind the Doctor that I am taking 15mg prednisone daily so I would think the cortisol levels should be higher. I told her to call me back.
I feel like I don't know what I am talking about exactly but I want to KNOW without a doubt that they do know what is going on.
Thanks for reading this, and if you know about these levels and whether I should be looking into some other issue I would love some insight. Is it still the prednisone that is causing these things? Do I need to calm down... okay I know that is a big yes! LOL I feel nuts right now... Dr Google and I do not have a very healthy relationship! ;)
Still looking forward to being off prednisone and the day when my blood tests come back within levels and without the Ls and Hs all over the place.
Love, Becca
If you are uncomfortable with what you are feeling and reading, definitely get a second opinion. We have to realize MG is not normal, taking steroids is not normal and IVIG is not normal and thymectomy is not normal for that matter either. So we can expect some problems--some are more expected than others.
This is when that big city neurologist that sees lots of MG patients and has access to endocrinologists and nephrologists, etc. is a real help. I don't know how much you should be worried. But it does seem like you shouldn't be having that much trouble from 15 mg of prednisone alone. Don't panic, but take care--love ya, b.
Like a cat in a room full of rockers..
The way I look at it....if I think I am crazy, at least I am sane enough to recognize that.
The lower I get on prednisone....the more emotionally unstable I feel.
Lord only knows what others saw when I was on more predisone.
Have a great weekend
Ann
Currently on 60mg Mestinon x 5, 500mg Cellcept x2 (1 week in), 10mg Paxil, 40mg Protonix.