Type 2 and Kidney Function

[palmgirl]

Hi

Hoping someone can help advise on my mum’s situation, as I am at my wits end.

My mum is 82 and type 2 diabetic. She has high blood pressure and numerous other issues, such as high cholesterol and cataracts. She was also recently diagnosed with pulmonary fibrosis and high platelet count. The high platelet count issue she also had 40 years ago (we think this could be genetic, and are awaiting further testing). She has also been told that she has declining kidney function and maybe(!) needs to see a nephrologist.

She was on metformin for her diabetes for 5 years. During this time, she had persistent diarrhea. At each of her diabetic review appointments she mentioned this, giving it was affecting her quality of life, but was told to persevere. After 5 years she finally convinced (!) her GP to change her medication. She is now on sitagliptin. She still has diarrhea, to the point she has no control over her bowels, but has been told by her GP that sitagliptin is not the cause (diarrhea not being a side effect for sitagliptin,), but it may likely be diverticulitis. She has an appointment to see a gastro enterologist later this week.

I feel over the past few years that covid has been an excuse for the GP’s neglect of my mum’s care. They now tell her she has ‘so much going on’ that sorting each issue will take time. Perhaps if they had not kept on giving her remote telephone appointments with a nurse on a very infrequent basis, this would not be the case!

Anyhow I have written a letter of complaint. In it I have detailed

· delays (ie in excess of 5 blood tests to establish her platelet count- a standard test). My mum never complains but asked on the 4th blood test whether the GP could mark this test as urgent, given she felt so unwell. He said he would then didn’t, now in their reply to my complaint letter he denies every saying he would,

· nothing having being done about her kidneys despite the connection between declining kidney function and diarrhea (hypoperfusion),

· the length of time on metformin despite her protests,

· why the delay over her ct scan for her lungs, given pulmonary fibrosis is so progressive.

I also asked for her previous kidney function tests. They have responded saying her declining kidney function is down to her diabetes, and high blood pressure, which is normal for diabetic patient’s and is slow, but have not provided any test results as I requested, and which I believe they are legally obliged to furnish me with. Without these I cannot accept what they are saying as either true or false.

Sorry for the long post and rant, but my question is to those of you who are long term diabetics, have you seen much decline in your kidney function? Have you any idea/figures for what would be considered ‘normal decline’?

Many thanks for any help!

 

[Dr Snoddy]

I am so sorry that you are having to fight these battles and it must be very frustrating and distressing for you. Do you have Power of Attorney over your mother's health issues?

 

[palmgirl]

Thanks for your reply and concern Dr Snoddy. Yes I do have power of attorney for my mum's health and have given her GP a copy of this. They also further requested my mum give them a copy of a their consent form confirming that she agrees for me to complain on her behalf.

 

[ianf0ster]

Hi @palmgirl and welcome to the forum. So sorry to hear of your mum's problems.
I just google'd the possible side effects of Sitagliptin and sure enough diarrhea, upset stomach , stomach pain are on the list.

But it gets worse: the Healthline.com website says that sitagliptin may cause problems (consult doctor) in people who have ever had: kidney problems, high triglyceride levels (related to high Cholesterol) and some other conditions.

 

[Daibell]

Hi. Can I check that your Mum isn't taking Ibuprofen or similar NSAID drugs? These can damage the kidney if taken long-term but we are not warned of this. My wife had a kidney transplant and the Ibuprofen she had taken for frozen shoulder was one of the suspects.

 

[palmgirl]

Hi. Can I check that your Mum isn't taking Ibuprofen or similar NSAID drugs? These can damage the kidney if taken long-term but we are not warned of this. My wife had a kidney transplant and the Ibuprofen she had taken for frozen shoulder was one of the suspects.

Thanks for your kind reply Daibell and for your information. No my mum doesn't really ever take ibuprofen, but good to know so that she can avoid in future.

 

[palmgirl]

Hi @palmgirl and welcome to the forum. So sorry to hear of your mum's problems.
I just google'd the possible side effects of Sitagliptin and sure enough diarrhea, upset stomach , stomach pain are on the list.

But it gets worse: the Helthline.com website says that sitagliptin may cause problems (consult doctor) in people who have ever had: kidney problems, high triglyceride levels (related to high Cholesterol) and some other conditions.

Thanks so much for your kind and informative reply and welcome Ian! God bless google hey . I have just googled the same after seeing your message and noted the kidney and gastro implications. Thank you once again for highlighting this, really grateful. My mums GP said he chose sitagliptin because it has no side effects of diarrhea. To be fair to him, he even showed her the leaflet accompanying the medicine and diarrhea was not listed. It seems it only affects 1 to 10% of patients from what I have read but nonetheless as you pointed out it can still affect some people this way.

 

[Antje77]

Hi @palmgirl , looks like something went wrong with your post. Did you mean to delete it? If not, just let me know and I'll put it back.

 

[palmgirl]

Hi @palmgirl , looks like something went wrong with your post. Did you mean to delete it? If not, just let me know and I'll put it back.

Apologies Antje, no never meant to delete. thanks for putting it back!

 

[Fruitella]

Regarding blood test results - and presuming the same in every NHS England area - results can be asked for and sent to mum by the hospital - without going through the GP. Dad sends a SAE to local hospital who not only carry out blood tests but also do the testing from GP samples. PALs should be able to confirm who the request goes to - much quicker than waiting for the GP these days.

 

[seanmorris3466]

Hi I had this problem so metformin was stopped and the same tablet as your mums was given along with insulin but shits carried on. It wasn’t until they decided to give me an Endoscopy to clear my bowels that my system in a way reset itself. As the metformin had caused a blockage so only thing that could get through was runny poo as it got through by running round the edges. The shits went but now where I went everyday I now go every 3-4 days so ask your doctor about this as it’s just a pipe up your rear end.

 

[Antje77]

Apologies Antje, no never meant to delete. thanks for putting it back!

Must have been a funny glitch in the forum software, I've magicked it back for you!

 

[palmgirl]

Hi I had this problem so metformin was stopped and the same tablet as your mums was given along with insulin but shits carried on. It wasn’t until they decided to give me an Endoscopy to clear my bowels that my system in a way reset itself. As the metformin had caused a blockage so only thing that could get through was runny poo as it got through by running round the edges. The shits went but now where I went everyday I now go every 3-4 days so ask your doctor about this as it’s just a pipe up your rear end.

Thank you so much for this Sean. I am sorry to hear you have had to go through the same, but glad to hear all resolved relatively easily, despite it having the opposite effect now . Your response was extremely timely as my mum visits the gastroenterologist today, so I have told her to mention she has a 'friend' that has experienced similar but was solved with an endoscopy that revealed a blockage. Thank you so much for responding as hopefully, hopefully this may have solved at least one of the issues!

 

[palmgirl]

Regarding blood test results - and presuming the same in every NHS England area - results can be asked for and sent to mum by the hospital - without going through the GP. Dad sends a SAE to local hospital who not only carry out blood tests but also do the testing from GP samples. PALs should be able to confirm who the request goes to - much quicker than waiting for the GP these days.

Thanks for your kind reply Fruitella, good to know this. Will do as you suggest. Didn't know what PALS was and just looked it up and looks like it could be useful. Thank you so much!

 

[AndBreathe]

Hi

Hoping someone can help advise on my mum’s situation, as I am at my wits end.

My mum is 82 and type 2 diabetic. She has high blood pressure and numerous other issues, such as high cholesterol and cataracts. She was also recently diagnosed with pulmonary fibrosis and high platelet count. The high platelet count issue she also had 40 years ago (we think this could be genetic, and are awaiting further testing). She has also been told that she has declining kidney function and maybe(!) needs to see a nephrologist.

She was on metformin for her diabetes for 5 years. During this time, she had persistent diarrhea. At each of her diabetic review appointments she mentioned this, giving it was affecting her quality of life, but was told to persevere. After 5 years she finally convinced (!) her GP to change her medication. She is now on sitagliptin. She still has diarrhea, to the point she has no control over her bowels, but has been told by her GP that sitagliptin is not the cause (diarrhea not being a side effect for sitagliptin,), but it may likely be diverticulitis. She has an appointment to see a gastro enterologist later this week.

I feel over the past few years that covid has been an excuse for the GP’s neglect of my mum’s care. They now tell her she has ‘so much going on’ that sorting each issue will take time. Perhaps if they had not kept on giving her remote telephone appointments with a nurse on a very infrequent basis, this would not be the case!

Anyhow I have written a letter of complaint. In it I have detailed

· delays (ie in excess of 5 blood tests to establish her platelet count- a standard test). My mum never complains but asked on the 4th blood test whether the GP could mark this test as urgent, given she felt so unwell. He said he would then didn’t, now in their reply to my complaint letter he denies every saying he would,

· nothing having being done about her kidneys despite the connection between declining kidney function and diarrhea (hypoperfusion),

· the length of time on metformin despite her protests,

· why the delay over her ct scan for her lungs, given pulmonary fibrosis is so progressive.

I also asked for her previous kidney function tests. They have responded saying her declining kidney function is down to her diabetes, and high blood pressure, which is normal for diabetic patient’s and is slow, but have not provided any test results as I requested, and which I believe they are legally obliged to furnish me with. Without these I cannot accept what they are saying as either true or false.

Sorry for the long post and rant, but my question is to those of you who are long term diabetics, have you seen much decline in your kidney function? Have you any idea/figures for what would be considered ‘normal decline’?

Many thanks for any help!

Gosh, your Mum has a lot going on, and some things are likely to be interconnected.

The one specific comment I will make relates to your mother's pulmonary fibrosis (PF). PF is quite an umbrella term for many conditions - some more readily identifiable than others.

There is a history of PF in my family, so I have seen it in action. What I would stress though is that every person is different. Some people find their progression is faster than they'd like and others find it slow, with a few finding themselves in a non-progressive state. It can also go in phases of all three.

PF tends to be tricky to diagnose, although you are correct the high resolution CT scan is the gold standard.

I watched a YouTube presentation on PF a while ago. The presenter happened to be a Brit, but living in the US. As a respiratory consultant she stated how sad she found it that her statistics showed the average time between the onset of symptoms and a definitive diagnosis was 7 year. Yes. YEARS. I found that quite shocking, but there usually does tend to be a process of elimination in play, in the early periods at least.

Edited to add that as people age their kidney function often degrades a bit. At a presentation a few years ago a doctor gave some statistics about the percentage of the population, over 60 yrs old, who had CKD is some type. The majority of those people with CKD were not living with diabetes.

Of course, many of those people were likely in the early, milder stages of CKD.

I do hope your mother can be more comfortable soon.

 

[palmgirl]

Gosh, your Mum has a lot going on, and some things are likely to be interconnected.

The one specific comment I will make relates to your mother's pulmonary fibrosis (PF). PF is quite an umbrella term for many conditions - some more readily identifiable than others.

There is a history of PF in my family, so I have seen it in action. What I would stress though is that every person is different. Some people find their progression is faster than they'd like and others find it slow, with a few finding themselves in a non-progressive state. It can also go in phases of all three.

PF tends to be tricky to diagnose, although you are correct the high resolution CT scan is the gold standard.

I watched a YouTube presentation on PF a while ago. The presenter happened to be a Brit, but living in the US. As a respiratory consultant she stated how sad she found it that her statistics showed the average time between the onset of symptoms and a definitive diagnosis was 7 year. Yes. YEARS. I found that quite shocking, but there usually does tend to be a process of elimination in play, in the early periods at least.

Edited to add that as people age their kidney function often degrades a bit. At a presentation a few years ago a doctor gave some statistics about the percentage of the population, over 60 yrs old, who had CKD is some type. The majority of those people with CKD were not living with diabetes.

Of course, many of those people were likely in the early, milder stages of CKD.

I do hope your mother can be more comfortable soon.

Thank you so much for your kind words and informative reply AndBreathe, really helpful! 7 years is shocking. Sorry to hear your family have a history of this, as it does not seem to be the most pleasant of conditions!

So my mum now has had the ct scan, (and advised by her gp it looks like ipf). She has been referred to a pulmonologist, (its a shame you have to complain to get this done). So just waiting for her to go to her appointment. In the meantime, I have been reading up on the disease and it does seem, as you say, that in some people the disease progresses much faster than others. I have told her in the meantime to look after herself (not always an easy thing to do) and be mindful of not getting over heated or too cold. I have a nice easy indoor walking exercise video and suggested when she feels better, and her other issues are sorted, to start with that - 15 minutes.

As regards the CKD thank you for that, food for thought!

 

[AndBreathe]

Thank you so much for your kind words and informative reply AndBreathe, really helpful! 7 years is shocking. Sorry to hear your family have a history of this, as it does not seem to be the most pleasant of conditions!

So my mum now has had the ct scan, (and advised by her gp it looks like ipf). She has been referred to a pulmonologist, (its a shame you have to complain to get this done). So just waiting for her to go to her appointment. In the meantime, I have been reading up on the disease and it does seem, as you say, that in some people the disease progresses much faster than others. I have told her in the meantime to look after herself (not always an easy thing to do) and be mindful of not getting over heated or too cold. I have a nice easy indoor walking exercise video and suggested when she feels better, and her other issues are sorted, to start with that - 15 minutes.

As regards the CKD thank you for that, food for thought!

Whilst your Mum's GP may have said he thinks your Mum's PF is idiopathic, once she is referred further investigations will take place - more bloods and lots of questions on telltale signs of conditions with the potential to cause PF along the way.

I lost my father to IPF, 30 years ago (how time flies!). When he was diagnosed there were no treatments, aside from managing symptoms and supporting with oxygen when that became necessary, and generally supporting the best quality of life for the patient..

These days there are treatments. They don't cure or improve the condition but are designed to slow (and ideally stop) progression. Criteria for treatment are very strict, but your Mum's respiratory consultant should be able to advise on what might be available to your Mum.

One thing I will say is that you shouldn't panic if your Mum is ineligible for treatment as it is only allowable once a specific level of lung function is lost. That sounds and must feel totally counter intuitive, but that's where the bar is set in England.

Your Mum should try to keep active and avoid picking up chest infections and the like, and it goes without saying if she smokes that ought to go.

Hopefully, your Mum won't have to wait to long for her referral to come through.

 

[palmgirl]

Thanks once ago AndBreathe, and how reassuring your comment has been. Yes I have not bought totally into what the GP is saying, and told my mum not to, not until she sees the specialist and has it confirmed. So, so sorry about your dad, hugs to you, timing can be so cruel, but at least advances are being made. Thank you so much for mentioning the treatment ineligibility issue. My mum was advised by her GP that treatment may or not be offered. My mum asked was this down to her age but the GP told her no, but the consultant will explain further. Ever since his vague comment this has been a niggling worry for us both. Why, oh why, could her GP not have explained further as you have done. We would have been so much more reassured. I actually cried with relief this morning when I read your message, that any ineligibility would be down to lung function. Thank you once again, you have been a star!

 

[AndBreathe]

Thanks once ago AndBreathe, and how reassuring your comment has been. Yes I have not bought totally into what the GP is saying, and told my mum not to, not until she sees the specialist and has it confirmed. So, so sorry about your dad, hugs to you, timing can be so cruel, but at least advances are being made. Thank you so much for mentioning the treatment ineligibility issue. My mum was advised by her GP that treatment may or not be offered. My mum asked was this down to her age but the GP told her no, but the consultant will explain further. Ever since his vague comment this has been a niggling worry for us both. Why, oh why, could her GP not have explained further as you have done. We would have been so much more reassured. I actually cried with relief this morning when I read your message, that any ineligibility would be down to lung function. Thank you once again, you have been a star!

Palmgirl, the bottom line is your average Gp will encounter 1-2 patients with IPF during their CAREER, so the chances of your GP (or any other) knowing a lot about it is low. It could well be he has just done a bit of reading around it and passed that onto you.

As I say, it is important your Mum relains as active as she can, and remains positive. She shouldn't be sitting waiting for bad things to happen. Let's face it, they come along, even when we're getting on living her best life!

If indeed your Mum does have IPF, then I would urge you both to look into a local PF group. They are out there. This month is PF awareness month. Who know, eh?

The is also the BLF, who have an excellent helpline where you can each, or both get support and information. They have advisors who can help you understand the condition and if required whatever benefits or social support might be available in your area.

https://www.blf.org.uk/support-for-you/idiopathic-pulmonary-fibrosis-ipf/what-is-it

Take support, or it can be a lonely trail.

Edited to add that if your Mum's consultant talks of palliative care or referring your Mum for palliative care, do NOT panic. We tend to think of palliative care being offered when there's nothing that can be done for the patient, but in reality it is the management of a long term condition and the symptoms that come along. So, in reality, your Mum may go into palliative care straight away, but it would be to help her achieve her best quality of life in living with a difficult condition.

 

[palmgirl]

Thanks once again for your informative, reassuring and caring reply AndBreathe. All noted. I feel truly blessed to have found you all and this forum!

My mum saw the pulmonologist yesterday and had further tests. She saw the enterologist last week, and her endoscopy is being arranged. She had her heart checked - echocardiogram, all fine there, and has given blood at the hematology department for them to do the genetic testing, amongst other things, for the cause of her high platelet count. So we are getting there!