any advice re nephrotic syndrome?

viktoria

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Diet only
Hi, posted yesterday re nephrotic syndrome but prob posted in wrong place.
just been diagnosed with nephrotic syndrome and feel like death, not getting any support from dr. Not coping at all.
any one have any advice or info into where i might find advice.
Many thanks.

xx
 

gfmoore

Well-Known Member
Messages
354
Type of diabetes
Treatment type
Diet only
Hi,

sounds like a real problem. I'm afraid I haven't had any kidney issues (er, that doesn't sound quite right), but I'm sure someone will be along shortly to share their experience.

The one thing we can give you though is support. When you say you are not coping, what do you mean exactly, with the disease?, with the impact on your life, with what the future holds?

Whatever, you are not alone, you can get through this, just take each moment as it comes. Try (easy to say) not to worry about tomorrow, just deal with what is happening now. Can you deal with what is happening to you now?

Know that someone is thinking about you :)
 

MarchHare

Member
Messages
12
Type of diabetes
Type 1
Treatment type
Insulin
Hi,

Not a sufferer of nephrotic syndrome myself, but do have stage 3 ckd so can relate in part...

I noticed on your previous post you mentioned you are on Ramapril - not sure if it's the same for nephrotic syndrome but they put me on Ramapril just before my initial diagnosis, and my kidney function dropped like a stone. So, maybe worth checking with your GP that it is the right drug for you. Have they retested your kidney funstion etc since starting the drugs?

Also noticed that you mentioned the fluid build-up you have has not receded. May also be worth checking the compatibility of the Ramapril & Flusomide.
I was doing ok on Amlodipine after the Ramapril incident, when they added Doxazosine to my regime to help bring my bp down further. I had a really bad reaction to the two drugs together and built up fluid like a sponge - my feet went almost square & my calves were so solid with fluid I couldn't even pinch them.

Now I'm on Doxazosine & Losartan, which seem to be working well for me. I stil have a little fluid build up in my ankles - enough that my socks leave marks but not enough to cause discomfort or worry - apparently this is a symptom of kidney failure.

Hope this helps a little!
 

viktoria

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Diet only
Hi,

sounds like a real problem. I'm afraid I haven't had any kidney issues (er, that doesn't sound quite right), but I'm sure someone will be along shortly to share their experience.

The one thing we can give you though is support. When you say you are not coping, what do you mean exactly, with the disease?, with the impact on your life, with what the future holds?

Whatever, you are not alone, you can get through this, just take each moment as it comes. Try (easy to say) not to worry about tomorrow, just deal with what is happening now. Can you deal with what is happening to you now?

Know that someone is thinking about you :)

Hi,

sounds like a real problem. I'm afraid I haven't had any kidney issues (er, that doesn't sound quite right), but I'm sure someone will be along shortly to share their experience.

The one thing we can give you though is support. When you say you are not coping, what do you mean exactly, with the disease?, with the impact on your life, with what the future holds?

Whatever, you are not alone, you can get through this, just take each moment as it comes. Try (easy to say) not to worry about tomorrow, just deal with what is happening now. Can you deal with what is happening to you now?

Know that someone is thinking about you :)
 

viktoria

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Diet only
hi,

thanks for the reply and the wishes. Not coping with the constant nausea and vommiting, swollen body, aprox 2 stone 10 gained in fluid in 12 weeks. Worst part is the Lethergy. I am on my 4th week off work and am sleeping up to 17 hrs a day. I have a rash all over my top half. i have had a kidney biopsy and am on huge amount of diruetics and ramapril as Bp was high too. The consultant has said full results will be in next week but it looks like diabetes damage. Is making referral to diabetes specialist. Think mostly what i need is for someone to tell it will get better and some advice on how i can get well, stay in control bearing in mind i only eat toast! From what i have seen of the forum so far there is a lot of support out there and an enormous knowledge base.
xxx
 

viktoria

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Diet only
Hi,

Not a sufferer of nephrotic syndrome myself, but do have stage 3 ckd so can relate in part...

I noticed on your previous post you mentioned you are on Ramapril - not sure if it's the same for nephrotic syndrome but they put me on Ramapril just before my initial diagnosis, and my kidney function dropped like a stone. So, maybe worth checking with your GP that it is the right drug for you. Have they retested your kidney funstion etc since starting the drugs?

Also noticed that you mentioned the fluid build-up you have has not receded. May also be worth checking the compatibility of the Ramapril & Flusomide.
I was doing ok on Amlodipine after the Ramapril incident, when they added Doxazosine to my regime to help bring my bp down further. I had a really bad reaction to the two drugs together and built up fluid like a sponge - my feet went almost square & my calves were so solid with fluid I couldn't even pinch them.

Now I'm on Doxazosine & Losartan, which seem to be working well for me. I stil have a little fluid build up in my ankles - enough that my socks leave marks but not enough to cause discomfort or worry - apparently this is a symptom of kidney failure.

Hope this helps a little![/QUOT
Hi,
Thank you for reply.
useful info re meds i will speak to my consultant when i see him next week. Hopefully it meds that are making me so sick. The swelling is bad but bothers more on my face, along with the rash i scare the children!!
xxxx
 

gfmoore

Well-Known Member
Messages
354
Type of diabetes
Treatment type
Diet only
Okay, so you say the doc said damage might be due to diabetes? So when did you find out you had diabetes, what type, what meds do you take.

edit: oops I noticed this is in the Type 1 area. Are you on insulin?

Do you have a meter and do you know your blood glucose levels or hgAC1 level?

What's your diet like? You say you only eat toast? Many of us (not all) on this site find that things like toast which is a carbohydrate really whack our blood glucose levels so we tend to avoid carbs and eat more protein, fats and leafy, above ground type veg (not starchy potatoes etc).

You might find that a step you can take and control is in getting your blood glucose level down if it is high. It'll make you feel better in yourself as well knowing you are doing something for yourself.

HOWEVER WARNING: I am not a doctor and with something a obviously serious as what you have you will want to check first.

I am sure some other people will be around soon with further advice. :)

Here is the usual info given to people who are new to diabetes/this site (I should get a copy of the properly formatted version)

-------------
Here is the information we give to new members and I think you will find it answers some of your questions. Ask anything else you need to know and someone will help.

BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find over 100,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

Reduce your carbohydrate intake
Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes-and-whole-grains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes
Before meals: 4 to 7 mmol/l
2 hours after meals: under 8.5 mmol/l
Blood glucose ranges for type 1 diabetes (adults)
Before meals: 4 to 7 mmol/l
2 hours after meals: under 9 mmol/l
Blood glucose ranges for type 1 diabetes (children)
Before meals: 4 to 8 mmol/l
2 hours after meals: under 10 mmol/l
However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to bloodglucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.
 

viktoria

Active Member
Messages
31
Type of diabetes
Type 1
Treatment type
Diet only
thank you and sorry so long replying. The last few days have been hell. Ended up in a and e on sat due to collasping in bathroom from the constant vommiting. Discharged after x rays clear home bruised and battered. Been in bed since as can not keep even water down. They have changed ramaptil to losartan and put fusemide up to 160mg. Swelling still bad and rash over entire top half.
in answer to the diabetes question i am type 1, 23 years. Novorapid and lantus. Also 325mg thyroxine daily. Past few weeks my sugars have been fine, which has suprised me considering no food and sickness.
i see renal consultant next Wednesday and hopefully will get some answers to what is going on. Am finding research into any more than basic info difficult to come across hence searching the forum for advice.
xx
 

jojojojo2012

Member
Messages
23
Hi my niece had thi when she was a toddler and swelled up like a balloon. She had to stay in hospital on an albumin (?) drip which helped pass the water out which was swelling here, made her pee for england. Im surprised your allowed to be at home when you are clearly so unwell. She is 10 now and has occasional relapses where she has to go onto steroids but they hope she'll grow out of it. I would go back to the doctors or ward and ask for help, you cant continue like that.