Be Careful

[Miss-guineapig]

Morning everyone, hope you are all well. I have pernicious anaemia and through the years have managed with self injections, resting, eating as well as I could (within reason), watching my weight and exercising as well as I can. In general I thought I was doing not too badly at all. Albeit tingling, little nausea ,brain fog, or a wee day in bed, tired at times. But in general normal things that I have come to expect and managed reasonably well since early days of PA …all symptoms which I always put down to pernicious anaemia. When I got Covid or other virus I was so very ill, again thinking my pernicious anaemia . Tiredness…well we all struggle on and get the odd blood test which comes back mainly normal. Anyway, since after Covid there were days I struggled like a car needing fuel , feeling very tired and pretty rubbish catching all the virus’s going. Increasing B12 jabs didn’t do the trick so I stayed on my 8 weekly jabs.

I wanted to tell you all this as I recently been diagnosed with Chronic Kidney Disease (CKD), and diagnosed at stage 3a. Total shock and the last thing I was thinking. But , perhaps like others, we miss being diagnosed with other serious diseases because we are so focused or ill with PA, it masks other things. I am greatful for my wonderful GP who had the insight to listen and to do some test and checkout why I was feeling as I did. Take care, and keep well folks x

[Jillymo]

I am so sorry to hear of your recent diagnosis which must have come as a shock. You are absolutely correct when you say about whilst we focuse on B12 deficiency other ailments can be missed.

Thankfully your Dr was efficient and looked into other causes for your symptoms. Thank you for pointing this out and warning others to be a little more vigilant and to look out for other causes.

Big hugs Miss- guineapig. 😘 🤗 💐

[Miss-guineapig in reply to Jillymo]

Thank you so much Jilly, hope you are keeping well x

[jade_s]

Sorry about your diagnosis, but glad you have a GP willing to investigate. Good reminder for us all. Sending best wishes

[Miss-guineapig in reply to jade_s]

Thank you so much Jade, there is always something in life to keep us on our toes 😂

[jade_s in reply to Miss-guineapig]

Seriously it never ends 😂

Can I ask which tests they used to find / diagnose it? My GP yearly runs liver enzymes, several kidney markers, and sometimes others. I guess I always thought they did the same in the UK. To assume makes an a** out of u and me , as they say 😂

[Miss-guineapig in reply to jade_s]

All because I had ongoing tiredness and seemed to catch everything going…It was a blood test Jade but solely for kidney function I believe, we discussed lifestyle changes and I was to be reviewed in a year. However I had (L) pain in my back but thought I’d hurt it at aquafit to be honest. So she sent for a scan just as a precaution as I have no risk factors eg diabetes or hypertension. Anyway scan showed scaring to left kidney, possibly from serious kidney infection many years ago when pregnant, so may have always had a slight kidney issue who knows. Dr then checked urine which showed protein , so now seeing consultant . All in the last few weeks… just goes to show what can happen xx

[jade_s in reply to Miss-guineapig]

Thank you for sharing. I hope the lifestyle changes will help and the pain will subside. The things we go through! Sending hugs xx

[Wheat]

Hello , I am so sorry to hear of your latest diagnosis. I wrongly put my deterioration down to my other illnesses and not B12/P.A. so I know how difficult it is. Thankfully your G.P. investigated and I assume you have treatment for the CKD. All best wishes.

[Miss-guineapig in reply to Wheat]

Thank you So much Wheat, seeing consultant but not a lot of treatment really just life style at moment to slow progression , but I’ll see what he says x

[BB001]

Sorry to hear this. Just a thought, have you tested your thyroid levels, specifically fT3 (free T3). Covid can have an adverse effect on T3 levels. Don't accept 'your levels are normal', it is likely they only tested TSH which can be normal even if T3 levels are low. Low T3 levels can be a cause of kidney problems.

[Miss-guineapig in reply to BB001]

Thank you so much fir this BBOO1, You have thought me something new here. Will be exploring this when I chat with GP X

[BB001 in reply to Miss-guineapig]

You might struggle to get fT3 tested even if your GP requests it. I'm in the middle of writing a complaint to PALS as my fT3 hasn't been tested for the last 3 blood tests - and I'm taking liothyronine (aka T3) thyroid hormone replacement meds. I have therefore resorted to ordering the thyroid function blood test from Medichecks. It's cost me £36 (normally £45 but there's a 20% discount until midnight tonight 31/7/23), but I badly need this test so I can check my T3 dose is correct.

[Miss-guineapig in reply to BB001]

Thanks for sharing, are you in Scotland BBOO1? I might wait and ask consultant in 2 weeks. Will let you know. Thanks again x

[BB001 in reply to Miss-guineapig]

Unfortunately I'm not in Scotland. Maybe you'll have more luck with fT3 and fT4 blood tests than I am currently.

I have hypothyroidism and I graphed my creatinine levels against my fT3 levels. There was an inverse relationship. When my fT3 was low, my creatine levels were high, and vice versa.

[Espeegee]

I'm curious here because I was diagnosed with CKD at stage 3 some years ago and was told it wasn't nearly as serious as it sounds but was merely a symptom of aging. Have you been offered treatment of any sort?

[BB001 in reply to Espeegee]

I would do your own research and see if you agree.

[EiCa in reply to Espeegee]

I could be mistaken but I think stage 4 puts you on dialysis, but maybe there are 5 stages? I am pretty sick so I pay close attention to kidney tests. It’s true it is normal to lose function as one ages, but that is why/when lifestyle changes can be a deciding factor if the disease continues.

[Miss-guineapig]

I think everyone is different, I am 66 years old. CKD is a progressive disease regardless. I have none of the risk factors but scans showed scaring to one kidney, and I have protein in urine. Its exercise, change of diet that can slow it down. Some people can stay in stage 3a or b for a long long time, for others its not always the case. I was down for annual review to be monitored by my GP practice (which I though everyone got) but due to protein in urine with not one risk factors (eg diabetes or hypertension) I now have an appointment with nephrologist . I don’t know any more at the moment as this is very new to me, but there is a Chronic kidney disease group (CKD) page on health unlocked, thats where I have gleamed all my information, possibly worth joining for yourself. Its perhaps not the right page to write about this topic…sorry admin if I’m in trouble 😀 Keep well Espeegee c

[jade_s in reply to Miss-guineapig]

tagging Espeegee so they see the above message, since the "reply" was to yourself and not to them

[Miss-guineapig in reply to jade_s]

Awe thank you. I’m Rubbish at all this 😂 Hope everyone else got their wee reply x

[jade_s in reply to Miss-guineapig]

🤣 no worries we all were/are rubbish at this/something else at some point or another x

[Peder1962]

Sorry to hear… Every 8 week maybe is not often enough. I need three injections every week (Tue, Fri, Sun) to stay on the safe side of symptoms. On weekly the symptoms come back, and two per week is not enough sometimes - but with three i am OK. I use Pascoe 1500 depot - hydroxocobalaminacetat.

[Miss-guineapig in reply to Peder1962]

Yes, so many people need frequent jags. Glad you’ve worked out how many needed to ease your symptoms. Wishing you well Peder

[Ghound]

Hi, So sorry to hear your news 😞 The positives are that it's been picked up and you'll be properly monitored and looked after from now on.

No need to reply to this, you just try to take things easy.

Wishing you all the best xx

[phoebegrant]

I wondered about the relationship between folate/B12 and CKD as CKD Stage 2 back in 2016. Nothing was said by my doctor - I had to research for myself. Since I have been SI with B12, folic and other cofactors, the CKD has not featured on my more recent results. Perhaps I need to shell out for more private testing.

ncbi.nlm.nih.gov/pmc/articl...

[Cherylclaire Forum Support]

Wishing you well, Miss-guineapig, and so glad you have a good GP looking out for you.

[ACritical]

Vitamin B12 injections are not the cure for every ailment. They don’t give you everlasting life. Have regular blood, urine and poo tests .

[EllaNore]

I'm very sorry to hear this Miss-guineapig. I hope they can manage your CKD and get you stabilized. I am glad you decided to look further. And that your doctors listened to you. Did they say what may have caused your CKD? Oh I just read your other response about earlier Kidney infection. I too had unexplained kidney failure back in 2006. thought to be a reaction from 800mg motrin and eating cherries. But no one ever really knew why. But my tests since 2006 always show a shadow or scarring on my left kidney. And through the years some of my blood tests have showed an issue but it was always ignored. But recently I too was feeling quite tired and breathless and B12 was just not cutting it anymore. I tried more. I tried less. I tried other supplements, but nothing was working. So 8 weeks ago my pulmonary doc drew 32 vials of blood and ran so many test i can't count them. I have yet to find what they mean, but there are some serious red flags. So something else besides PA is going on. I am just waiting for my newly referred consultation with Mayo Clinic to find out what. So yes it is crucial not to excuse everything as PA. You can have multiple autoimmune issues at one time.

Good luck to you Miss-guineapig.

[Miss-guineapig in reply to EllaNore]

Thank you Ella, wow! You’ve been through the mill. Please keep us posted. There’s a CKD page you could link on to too. Keep well Ella x

[B12life]

Sorry to hear you are not feeling well. Happy at the same time to hear you found the cause.

Thanks so much for the heads up. This is why I love this community!!!

[Nackapan]

Sorry to hear you've something else to deal with.Take care

[Cobalt1312]

Miss-guineapig I'm so sorry to hear about your new diagnosis, but like everyone else here I'm glad your doctor found it and was aware your symptoms might be something other than 'just' PA. Thank you for this warning.

It hits me especially as something to watch out for because recently I had a compete metabolic panel and my blood CO2 was slightly low. My endocrinologist was somewhat puzzled and asked me if I hyperventilate -NO I don't.

I did a quick google search of what causes low blood CO2 and one of them was kidney disease. It's good to be vigilant and know readings that are 'slightly off' over time can show a pattern of developing disease.

Best wishes and sending a big hug