Ckd very fatigued

[Julieow]

Hi I have iga neothrathapy I wasn't feeling to bad until a year ago when extreme tiredness started and breathless following tests they can't seem to find why leaving me very frustrated as its having a big Inpact on my life any help or advice would be much appreciated

[MAS_Nurse]

Hi Julieow,

Welcome to our community. Hopefully, you find folks here a very knowledgeable and are ready and willing to share from their experiences. In the first instance regarding your question, do have a chat with your specialist Nephrologist as they are best placed to investigate any changes in your conditions and to answer professionally your questions.

I will put up some link to websites with more information about igA nephropathy. Although tiredness and breathlessness are not mentioned, it is important to get yourself check out by your doctors for other possible causes e.g. cardiac and lung issues that may overlap with your current condition. The heart, blood vessels, lungs and kidneys are all involved in maintaining water and electrolyte balance in the body ie. homeostasis, and if they are not working properly they need to be reviewed.

Kidney Research UK:

kidneyresearchuk.org/health...?

EdRen: edren.org/pages/edreninfo/i...

National Kidney Foundation:

kidney.org.uk/help-and-info...

Ok folks please say 'Hi' and welcome this new member.

Best wishes,

MAS Nurse and Moderator

[Julieow in reply to MAS_Nurse]

Thanks so much the must frustrating thing is not knowing what is causeing it I will make an appointment

[rabbit01]

Hello, I have IGAN too. I was diagnosed at 18% eGFR and at that stage was already feeling tired and was very breathless. Have your vitamin B12 levels checked out at your next blood test as we people with IGAN often have a thing called pernicious anaemia which is also an autoimmune problem stopping us from absorbing B12. My energy levels and breathing improved considerably once I started on B12 replacement which is just a simple injection by your GP / nurse every three months. You cant just take B12 tablets as it is a problem with the way that we cant absorb B12. IGAN is so rare that many doctors are not aware of the connection with pernicious anaemia but I know several IGAN sufferers (including me!) who have it as well.

[Zazzel]

Hi Julieow, I have IGAN as well. As Rabbit mentioned, IGAN is thought to be an autoimmune disease. Looking into B12 deficiency is a great suggestion from Rabbit. If you find that is not the cause you might also look at food or environmental intolerances or allergies. There has been studies done that have found a correlation between the disease and gluten intolerance and possibly dairy intolerance. If this happens to be the case for you, it could cause fatigue. These types of intolerances can develop over time and even though you could eat them in the past, they may start being a problem later in life.

Gluten in particular made me extremely tired. I have Been gluten free for years now and it's really helped. Although doctors don't know exactly what causes IGAN, in my case, both my nephrologist and DO think mine is caused by my many food and environmental intolerances. Getting those under control has helped me feel a lot better. My case may be unusual and may not be an issue for most with IGAN, but thought I'd throw it out there as an option to look in to.

As a side note, please watch your blood pressure and cholesterol levels as they can rise from this disease. IGAN can take many years to progress. I was in my late 40s before I had hematuria then several years later proteinuria, then my cholesterol and blood pressure started rising. These can all be controlled and can help slow progression of the disease so keeping an eye on them early can help.

[Irelandy]

Hi Julieow, I too experience tiredness and breathlessness. Worst in the morning. I try not to do too much and drink some water. It helps.

My BP was v high and went untreated but now it's stable and my egfr has settled at around 22.

I guess that's as good as I can hope for.

Good Luck 😁

[Zazzel]

I'm sure your doctors checked your potassium levels, but just read this article on how too much potassium can make you tired and thought of you. healthline.com/health/kidne...