Would appreciate advice

[wiserlady]

Hi am new to this group, hello. I am a 62 year old lady. Who for a few years has been losing energy. i.e. struggling more to go upstairs and exert myself. More so than the usual 62 year old.

Then a few weeks ago it became much, much worse, where it was almost impossible to get upstairs to bed, wash etc. I was told I would have blood tests and had to wait. It continued. The only thing that gave me a little "help" with it was using my saline solution in my nebuliser, breathing it up, or 200 mg of potassium. But it would still be bad. I also had very high blood pressure which I had never had before.

My doctor agreed I did the right thing in taking potassium - seeing as it was that or being far worse and rushed into hospital. It is not allergies or my heart. Am here because this is the kidney group.

Am wondering if maybe because I have been taking a lot of antibiotics for years this has led to kidney problems. Obviously I need to wait for blood test results and all the rest. My doctor agrees with me and is checking this out. But any thoughts re kidney problems would be appreciated. Thank you and hello.

[MarBea]

Hello and welcome!

Extreme fatigue, can also indicate heart issues in women. I suggest you get a complete physical and work up.

I have suffered from fatigue for a while, and at least I now know, my poor kidneys are struggling.

Hopefully its not a kidney issue, but if it is, we are here.

I hope you get the answers you need, soon.

Please let us know, what you find out.

[wiserlady in reply to MarBea]

Hi there. My heart has been checked out. I am in the UK so I cannot just ask for this and that and give them a list. They are deciding what to look at . Also if it were the heart it wouldnt get bad and then get a bit better and then get bad again. i found that if I took 200 mg of potassium it helps.

[rabbit01]

Firstly I am sorry you are going through this. I have had severe kidney problems since I was 48 and I am 53 now and starting dialysis. I have had all the problems you are outlining. To be honest without the results of the blood tests it could be all manner of things. What I can say is that antibiotics can have a negative impact on your kidneys so that is it one possibility. Also if you kidneys are performing badly then that may lead to low haemoglobin and or B12 which will make you anaemic. You may also find that if your kidneys are not well then they wont be able to extract water from your blood as quickly as healthy kidneys and that can make you feel very breathless. However don’t be tempted to drink less water as that is bad for your kidneys too! The good news is that all of these conditions can be helped by injections or medication. Once you get your blood test results then your doctor should be able to identify the problem and help you. Stay in touch.

[wiserlady in reply to rabbit01]

Thank you very much for your very helpful response, I do appreciate it very much. I have had my vitamin b12 checked and I take vitamin b 12 regularly, as well as vitamin b natural brewers yeast, and I get times when my energy is quite good. I was told before that the reason I struggled to do physical exercise/ walk far was probably because I am round shouldered and have crushed lungs, but that didnt make sense to me as have had them for 62 years and it would come and go and I used to be able to do everything physical I WANTED despite them. I would have thought if my lungs cannot function well they would be the same all of the time, not ok for three months and then bad for three months. I was also told stuff about allergies etc which I had already thought of and which made no sense for many reasons One of the problems with seeing doctors in the Uk is that you can see a chest man and then a kidney man but none of them share information or join things together. The lung man always assumes its a lung problem and so on. They might take x rays and then take them again a few months later, spiro, lung function and just keep repeating that over and over for a year, and really it is just a waste of time. It never occurs to them to look at the whole picture or think outside the box. . Now I realise that I have taken a lot of antibiotics and it could be related and could explain why it varies and goes up and down. I dont know about you but its just the not knowing, so much easier if you do. Ive had a few years of doctors telling me all different things which make no sense - acid reflux! But over the past month or so it has been far worse, struggling to just go upstairs and then worn to a frazzle when I get there - gasping for air. It has never been that bad before. And needing help with breathing because of it. And they always ignore that when I take a potassium tablet I feel better. honestly. Please do not reply if it is just to suggest I go to a doctor.

[rabbit01 in reply to wiserlady]

I am in the UK. I have to say that my nephrologist was absolutely hopeless and didn't try anything to slow down the progression of my kidney decline. I learned more from the internet and this group than I ever did from the doctors. Don't be fobbed off by the doctors. You have to take ownership of your condition and write everything down and when you see the doctor have written questions and don't let them waffle you out of their office. I am sorry that I can't be of more help. Have you not got any family members you can get involved as it's difficult to battle the health system on your own especially when you are feeling unwell.

[wiserlady in reply to rabbit01]

Thanks. I think I CAN see what you mean. I was told my problem was asthma / lungs and it didnt make sense to me, well not on its own. They seemed to latch onto the breathlessness and assume it. They may be right but all they ever did was throw asthma inhalers at me, and expect me to keep taking time off of work to travel for lung function tests/spiro tests etc, at great expense to me with not being paid when not working - and it achieved nothing. I can get asthma inhalers from my doctor instantly so why wait 6 months and travel 20 miles for one anyway? I will do more research. I am good at research, solving problems and making decisions, its just the learning as I go along. I am forceful. I dont need a family member to speak up for me. I own and run a business where I HAVE to be decisive and forceful with staff and clients every day. But I appreciate what you are saying.

I learnt years ago doctors often get it wrong. I had very bad stomach ache last year and told them I was sure it was stomach ulcers. The pain and how it got worse when I took a painkllers had convinced me. They kept ignoring me saying it was ibs. I insisted they investigate. They were nagged till they said they would do an ultra sound. That is all they would offer to do. They did it and said it was clear - no ulcers. Yet an ultra sound does not look inside the stomach it looks outside. I pointed out that this cannot see ulcers and they said well er um. And then reluctantly arranged the camera down throat and of course there were ulcers. Many people would have just accepted what they said about how the ultra sound found nothing. Because they dont know enough and are too trusting . They Have a nice day.

[rabbit01 in reply to wiserlady]

Well I hope they get to the bottom of it soon. It's horrible feeling unwell. I wish you all the best.

[wiserlady in reply to rabbit01]

thank you god bless

[JimVanHorn]

Hi Miss Wiser, I have kidney disease stage 5, I have not started dialysis yet. It is hard for me to diagnose what is wrong with you, and on this website we do not diagnose. I can tell what happened to me. I had prostate cancer and bone cancer for eleven years, and it is all gone now. During my recovery I also became very tired. I also bought Vit B12 tabs ( in the USA we can buy the HCl salt of cobalamine ) which is absorbed somewhat under the tongue. This helped me with energy. I snore when I sleep and have sleep apnea, so I received a CPAP machine that I use when I sleep. This helped my oxygen levels. My creatinin levels were very high, so I had my kidneys checked. The medication for kidney problems is DIET. The diet is low in Potassium, Sodium, and Phosphates. Also, drinking the correct amount of water is important, and only your kidney doctor can tell you that because we are all different. It depends on age, stage, and body weight. So I learned that there is a blood hormone excreted from the kidney that regulates how many Red Blood Cells leave your bone marrow. So when this hormone is not excreted, you become anemic. The hormone is called Erytropoetin and there is a synthetic drug that replaces the hormone. If your hemoglobin levels are normal you may not feel tired. I also find that getting involved with other people gives you more energy by talking and doing other things with them. I understand how doctors only look for their expertise in treatment, but it would help if you asked them for your test results and take them home with you. Keep a note book of your tests so you know if they are going up or down. Then when you see a doctor you can tell them your past test results.

[wiserlady in reply to JimVanHorn]

Hi there Jim, thank you so much. VERY INFORMATIVE ! Am so sorry to read you have been through so much.

Had never heard of the HCI salt cobalamine thing, will look into that. Not sure if we can get it in the UK, maybe imported from USA.

Some of the stuff Ive read said to have more potassium and some less.

When I became very breathless and lacking in energy and struggling just to move about I found that taking 200 mg of potassium helped bit. And as we need about 5000 a day anyway 200 one way or other wouldnt make much difference.

Am new to all this idea of kidney problems. So most here will know far more than me.

Its good to share and support.Am glad that you have found a way to live with your conditions Jim. it must have been very depressing and frustrating and worrying.

How are you feeling now>

[Bassetmommer NKF Ambassador in reply to wiserlady]

HI Wiserlady,

Taking potassium can be very dangerous. It can cause a heart attack. It can cause shortness of breath. If you do have issues with your kidneys, the last thing you want to do is add potassium. Please have your labs done and look at the levels. It might be something you will have to ask the doctor to check if it is not part of a basic blood panel.

kidney.org/content/six-step...

[wiserlady in reply to Bassetmommer]

I understand that but at the time I could barely stand up or breath and takign the potassium couldnt have made it any worse, and it helped.

[JimVanHorn in reply to wiserlady]

Hell again, I agree with Bassetmommer below about potassium and kidney disease and I have never hear of it for breathing and I was a pharmacist for 35 years. I hope you find out what is causing the problem, it may be an allergy which can get worse. The story behind Vit B 12 is interesting. Sixty years ago they had a problem with oral B-12 being digested by stomach acid. The normal B-12 in the body is Cobalamine HCl so they though they could attach it to a cyano molecule which is large and they figured the stomach acid would let it go into the small intestine. It did not work so they injected cyano-cobalamine into everyone for 60 years! Now they are making the HCl form and it goes into the gums at about 5%. You only need little bit of B-12 anyway. SO try to find a tablet that dissolves in the mouth if you need B-12. Good luck with your breathing and try to find out the problem so you do not pass out.

[wiserlady in reply to JimVanHorn]

It is not an allergy, and the doctor agreed with me that if it was then potassium would not help it.

[Jayhawker]

I agree completely with what others are suggesting; you really need lab data before you make dietary changes and so forth. You may need additional testing beyond blood work.

I live alone and so sometimes find that my doctors may not take me seriously when I describe what I’m experiencing and show them my data.

For instance, I was having considerable difficulty with both low blood pressure and suddenly plummeting blood pressure about 2 1/2 years ago. This has been going on for nearly 4 years. I brought it up in all my doctor appointments. I was just told to drink ice cold water when my blood pressure plummeted.

It finally dawned on me that I could take a few videos of myself during a few episodes with my blood pressure plummeting using my iPhone. I did that and then showed the videos to my doctors. That definitely helped. My doctors had a much better picture of what was happening from my short self-videos. That along with my data recording frequency, duration, time of day, setting, and temperature, led to my doctors modifying my treatment plan.

In my case, I was very dehydrated. So they discontinued my diuretic medication, took me off the low dose of blood pressure medication, and increased my daily fluid intake.

I no longer have extremely low blood pressure nor suddenly plummeting blood pressure. The self-video seemed to really help my doctors. I don’t believe they actually didn’t believe me before seeing these episodes; I just think they were having a difficult time believing what I was experiencing was as severe as I had been describing.

Jayhawker

[wiserlady]

Its always good to read what others have to say. But it does not make sense to me that when you are struggling to move and breath you do not try 200 mg of potassium in the hope it helps. 200 mg is only a small amount anyway. And my doctor congratulated me on thinking about it and said I did the right thing. Because it is that or calling an ambulance, which is a struggle, and being taken to a hospital a long way away for a week. You do not have the luxury of thinking about it and waiting for tests when you cannot move or breath. Ignoring your work and commitments and life for a week when that could have been avoided, and is also very expensive to do. Continually being rushed off to hospital for a week at a time was going to mean me shutting down my business/work and income and losing my house. Easy choice then.

[janemery]

Thank you for your information. I have stage 3 CKD and my Dr said I cannot even eat bananas because it has too much Potassium. So that option is not for me. I was having trouble with my breathing and had it checked and found out I have Chronic Bronchitis. I am now using a inhaler and the difference for me is amazing. I have so much more energy and feel so much better.

I had no idea that my breathing problem was causing me to feel this way. I have found that taking Curcumin has helped me a lot.

[wiserlady in reply to janemery]

I take curcumin sometimes maybe it should be every day. Hope yo u are better. Everything I have read and been told by doctor says that SOME should have more potassium and others should have less. Each is different and it is daft to assume its the same for everyone. And if you are struggling to breath the odds are that more will help - which in my case it did.