Increased Potassium - advice please

[BrendaM]

Hi Folks
My FSGS 15 yr son was doing really well on Cyclosporin for 2 years until beginning of May (exams time) when protein / kinase ratio was raised. First simvastatin for cholesterol was stopped, then cyclo changed to Prograf / Tacrolimas.
After this the potassium started increasing to 7.1 involving overnight stay in hospital last week for salbutamol nebulisers to bring down the potassium to 5.3.

He has been eating more or less normal diet until now when they suggested going easy on pot rich foods - most of which are what I call healthy! ie fruit & veg. Not too alarmist talk.

Then further blood tests on Tues showed level again rose to 6.8 so off to specialist Bristol hospital and emergency biopsy done today. I gather the diet will not raise the pot so dramatically and so quickly so must be some other cause (Prograf??)

I would appreciate any advice on why the pot may have risen and how I can help him to bring it down. Does anyone know of any homeopathic or natural remedies which may help (eg eating oats to lower cholesterol)?

Am very worried, on surface he looks and has been so well but inside we seem to be starting the slow decline to dialysis etc. I had prayed we might be lucky and last a long time before that

Thanks BrendaM
PS Elaine - have told Rob to look out for you and Rachel in Bristol this week.

[Elaine]

Hiya brenda thanx for pm message have replied to u

Its hard to see your child deteriorating and sounds very similar to Rachaels' progess too before she started dialysis. We had same thing about her potassium going to over 7 and trying to get it down with nebulizers how thats supose to work not really convinced as it rebounded up again!!.

I do hope that the results of Robs biopsy are optimistic its a worrying time for you, I remember it all soo well. Rach cholesterol shot up over a few years to 16 due to the nephrotic syndrome and tried many statins which didn't suit her lots of side effects. She then had omega 3 fish oils to help her lipids which did help although disgusting taste!!! also other drugs to reduce lipids. Now her kidenys ahve totally failed her lipids are within acceptable levels and has recently stopped the medication . Although not 2 sure if may have to restart as leveles creeping again.

We are only @ Bristol on haemodialysis tue now butwill look out 4 u and do wish u the very best of luck at this very worrying stressful time 4 u all.


best wishes Elaine Rach & family. xxx

[R30]

Hey Brenda

So sorry to hear about Rob's potassium problem - this must be very hard for you both.

It is possible that his kidneys have taken a bit of a downturn, and this is why his potassium is starting to raise; or, it may be due to the Tacrolimus (looked this up on the web and it's a definite side effect). The only thing I would say is that eating a low potassium diet ensured I stayed off dialysis for six years from when I was diagnosed at 30% function.

Also, I wouldn't try any homeopathic or natural remedies; anything with herbs in is likely to be very high in potassium (most herbs are).

I would ask for a consultation (at Bristol Children's/Southmead) to try and establish exactly what is going on. From your posting it sounds like you haven't been given much information on why this has happened. It may also be worth asking for Rob to be put back on Cyclo if this has suited him for some time. Did they ever explain to you why they were changing his meds anyway?

Feel free to PM me anytime Brenda and keep us posted with Rob's progress.

Ruth xx

[BrendaM]

Thanks Elaine & Ruth, good to hear from you
all this happened whilst I was in Devon moving a frail relative 200 miles to a care home near us so am getting info second hand from husband who is with Rob. Biopsy went well but have just learned his kidney function is now 50% (from 100% and doing well for 18 months last Oct) so a great blow

Am pleased to hear Omega 3 is a 'goodie' have been including that in some healthy eating for family and will now up the level he gets as a special supplement. eg I use Columbus eggs which are rich in them. It is just this sort of advice I need when so many 'healthy' food such as kiwi (high vit C) are high in potassium.

I have been pushing Rob to eat pineapple which has bromelin a protein digester but he has been a teenager and decided to avoid it completely to contradict me
Does anyone know if pineapple is high in Potassium? it wasn't on our list of foods to avoid.

Was also looking to start him on milk thistle tablets - silymarin I think - which is from the 'silk' from inside sweetcorn cobs and which is a great detoxifier for the liver which comes under strain in kidney diease. Hadn't started this yet as doing so well until this year.
Anyone have experience with this herb?
Have also heard kidney patients using goldenseal to good effect, not sure what it does

They think it could be due to hormones as grown now to over 6 foot. Am hoping they come home today.

thanks to all for advice, no doubt I will need more if we move to dialysis stage.
God help us, we have so many other family health problems as well as Robin. Daughter with IgAN and we are moving three elderly relatives (one with Alzheimers) in with us later this year In for a penny, in for a pound. With so many problems we thought if all under one roof at least we can afford professional health carers to come in and help us

thanks folks
BrendaM

[Kelly]

Hi Brenda

My husband used to suffer from really high pottasium levels, and it seemed that nothing would bring it down.

We then met with a Renal dietician and found that he was eating all the wrong foods.

Then further blood tests on Tues showed level again rose to 6.8 so off to specialist Bristol hospital and emergency biopsy done today. I gather the diet will not raise the pot so dramatically and so quickly so must be some other cause (Prograf??)

I beleive that the diet has alot to do with the levels. The key foods to avoid or eat in moderation are : Potatoes, mushrooms, chocolate and lots more.

I hope all goes well today

Love Kelly

[Cheryl in CT]

Hi, Brenda -

I'm going to PM you a list of higher-potassium foods that I was given back in my "watching the potassium" days. Unfortunately, many renal patients must watch not only their potassium levels, but also the levels of any of a number of other nutrients, so sometimes working out a good, "proper" renal diet is a major headache. That. of course, is where a good renal nutritionist or dietician can come in handy.

Unfortunately, I'm finding pineapple on my old no-no list, at 178 mg of potassium per cup. (Maybe it's not such a bad thing that Rob won't eat it, anyway...)

If Rob's nephrologist can provide some hint of maximum daily allowances of various nutrients to shoot for, it will probably make it a bit easier to figure out what he should or shouldn't be eating. I know it's early days for you having to go thru all of this, and with the added responsibilities of the rest of your family, it must be an incredibly difficult time for you. I do hope you'll feel comfortable looking for a little support from all of the wonderful people here on this board.

I'm wishing you all the best, Brenda. I'll send that PM in a minute.

Cheryl
(Connecticut, USA)

[Elaine]

Hiya Brenda thanx aghain for your posts pms etc., Have replied again to u.

Yeh think pineapple high inpotassium also fresh orange is Rach use to have that n had to cut it out etc except ccassional treat etc. Be worth speaking to dietitions @ Bristol kids they are soo helpful and supportive etc. Although It initally can be alarming having to change diet etc finding alternative foods etc.Also if u dont eat can put up your pott levels too as we found out early on with Rach!!. Catch 22!!!

Anyhow keep us in touch Elaine

[JMan]

Tinned pinapple in Syrup (not juice) is usually acceptable for patients on a renal diet. Fresh, dried and juice are generally 'out'..

Yes a renal diet is not the most healthy (in the traditional sense) as it cuts out a lot of 'fresh' and high fibre items as they tend to be high in potassium or phosphate.

However with a bit of research you can soon work with the things one 'can' have and try & vary those as much as possible.. Not always easy but doable..

Immune suppresants will raise cholesterol however it should be possible to lower it dietarily. As you mention oats are a good idea.

Be wary of adding any herbal remedies eg Golden Seal without consulting a medical herbalist AND your renal doctors.

I was pretty fussy over the renal diet at 15 ( as most people are! ) As I needed calories (not quite the same as with FSGS) I had to add double cream to my diet to boost the calorie intake. I hate the stuff to this day!

http://www.kidneypatientguide.org.uk/ne ... ecipe#3636

Is quite an interesting list of foods

Good luck.

[nycpetit]

everyone here has given good advice, but there's one more thing here I want to add (and perhaps someone has touched on this but not sure).

After my transplant (and before I had really bad potassium as well) the Prograf raised my potassium to the levels it had been before transplant. it took approximately three months for the levels to even themselves out. And during that time I still had to stay on a potassium restricted diet. It didn't happen right away, but within a week of taking it, it was elevated again. The unit told me that some patients have that response to Prograf, and for some it levels out (for most) and for some it does not.

I am not sure how long he's been on Prograf, but that could be making the problem more difficult for now.

[milli]

Hello All,

I want to share some important tips for avoiding HIGH POTASSIUM FOODS. Although everyone given excellent feed back

VEGETABLES AND STARCHES
Portions= 1/2 cup unless otherwise stated

LOW POTASSIUM: TO 125 MILLIGRAMS

Alfalfa seeds, sprouted, raw, 13.....Arugula, raw, 37...Bagel, plain, 50......Bamboo shoots, cnd, 53.......Beans, green, ckd. from frozen, 76.....Bean sprouts, mung, raw, 78.......Bean sprouts, mung, ckd., 63.......Bread, one slice, white, 28........Cabbage, raw, red, 72; *common, 86....... Carrots, ckd. from frozen, 116................*Cauliflower, ckd. from frozen, 125.........*Collards, leaves, ckd. from raw, 84.........Corn, ckd. from frozen, 114.......Cucumbers, sliced, 84.......*Dandelion greens, ckd., 121.......Eggplant, steamed, 119......*Endive, raw, 79.......Jicama, raw, 98..........Leeks, ckd. from raw, 46; raw, 94........*Lettuce, iceberg, 1 cup, 87.........*Mustard greens, ckd. from fozen, 104...........................................**Oatmeal, regular, 3/4 cup, 99........Onions, raw, diced, 124.........Pasta, plain, "al dente," 1 cup, 103.......Peppers, sweet, raw, 89; ckd., 113........Popcorn, air popped, 1 cup, 20.........Psyllium husk fiber, 1 T., 3..........Raaaaaadicchio, raw, shredded, 60..........Rice, ckd., white, 29; brown, 69..........Turnips, white, cubes, ckd, from raw, 106.........Water chestnuts, cnd., 83............@
**fOODS HIGH IN PHOSPHORUS;
*FOODS HIGH IN VITAMIN K, a concern for those on anti-coagulant therapy.

BEVERAGES

LOW POTASSIUM:

Coffee, 6 oz., brewed, 124
Cranberry juice, 1/2 cup, 31
Ginger ale, 12 ounces, 4
Tea, 6 ounces, brewed, 27

FRUIT
Portions=1/2 cup raw, unless otherwise stated

LOW POTASSIUM: to 120 milligrams

Apples, peeled, sliced, 62+++Applesauce, cnd., sweetened, 78; unsw., 92+++Apricot, 1 medium, 105+++Blueberries, raw 65+++Cranberries, raw, 39+++Cranberry sauce, cnd., sweetened, 36+++Fig, fresh, i medium, 116+++Fruit cocktail, cnd., heavy syrup, 112; juice pack, 118+++Grapes, Thompson seedless, ten, 93+++Grapes, Tokay, Emperor seeded, ten, 105+++ Lemon, 1 med, 80; Lime, 1 med, 68+++Peaches, cnd., heavy syrup, 118+++Pears, ckd., heavy syrup, 83; juice pack, 119+++Pineapple, raw, diced, 88+++Plums, cnd., heavy surup, 118+++Plums, raw, 1 med., 114+++Rasberries, raw, 94+++Rhubarb, ckd., with sugar, 115+++Watermelon, diced, 93 ......


Milli




[/b]

[chris_russ]

your hospital unit should be able supply you with a diet sheet for high potassium, its generally the 5 portions of fruit and veg a day- sounds easy, its far from it.
double boil your potatoes,
don't have any frozen meal with potatoes in them
and you have to stick to weighing your portions as well

you can also ask to see a dietician as well
good luck
chris

[merak]

just read your message..

My potassium shot up to 8.6 and left me unable to use most of my muscles for a few days!!!!!
My diet was reviewed and it turned out that i already ate a low potassium diet (quite accidently!!).
Anyway, i found out that missing meals pushes your potassium up quite quickly and they put me on sodium bicarbonate caps and i haven't had a problem since...YAY!
Treat all fruit and veg as "treat food" it's the easiest way, just have 1 or 2 portions a day.

Hope this helps a little x

[Fang25]

I will read from time to time for that.

[Kristina]

I have already mentioned a few things I do with my diet,
in this pre-dialysis-stage.
From privately paid blood test I know that I am about 10%GFR.
I am without a NHS-GP to go to and without a NHS-rheumatologist or NHS-nephrologist to go to and because of this scary situation I have to use my own initiative to survive.
I am a vegetarian, which means I do not eat meat or fish
but I eat eggs and lentils and soft cheese which seems
to provide among other things the protein I need.
The only milk I have is in my two cups of coffee each day.
My liquid intake, which I carefully control
consists of two coffees, one mug of chamomile tea,
one mug of peppermint, one mug of black tea with lemon
and one glass of lime-juice (half a freshly squeezed lime)
with filtered water each day. I have sugar in my teas and coffees.
For fruit I have a minimum of one peeled apple and half a pear,
sometimes more each day. I also bake my own salt-free bread.
I do not have salt in anything and I don't eat any tinned food
or any ready-to-go-meals. (Like pierce, ding, eat).
I have a lettuce and cucumber-salad every day.
I would appreciate if I could compare my pre-dialysis-diet
with others, because, with my husbands help and our research
on the Internet I have struggled
to put together a reasonable diet to be kind to my kidneys.
My weight is kept perfectly normal, and
privately paid blood tests assure me that this diet helps me
to keep my Sodium (140) and Potassium (4.4) perfectly under control.
Good luck and kind regards from Kristina.

[Kath T]

Hi

There are so many things to think about with a renal diet.
Potassium is found in rocks, it is a kind of salt and so anything the grows from the ground will contain potassium. There for you have to think about hidden sources such as coffee (Coffee beans) There are lots of high and low sources as people have mentioned. My advice would be if its grown or made from something grown, look it up to see if its high or low.

I didn't know that if you skipped meals it can increase potassium, thats worth knowing for sure.

I'm concentrating on a low salt diet at the moment in order to control my fluid intake and diet really helps make it easier to drink less. Problem is I'm tempted to eat more fruit and salad as it feels nice in my mouth.

I can understand and admire the research and work you have done to try and help your son. However please be careful about what supplements you use. Everything is a balance and lots of things interfere with drugs. Just becasue its natural and good for you doesn't mean it will be suitable for him.

Good luck, let us know if there's any change.

Kath