eGFR 51 Creat 109 CK 624

[Wilson123]

Hi I’m Pippa 51yrs old & was wandering if anybody has had any issues with their kidneys following radioactive iodine treatment for Graves’ disease or have ever had similar blood results to mine? Well I’m in a bit of a pickle & just come out of hospital because of the above! I was told I had AKI but this has now been resolved? The main issue that I’m having is that because my Thyroid is now very under active this is preventing all of my organs from working properly including my bladder, bowels & kidneys! I’m drinking litres of water to flush my kidneys & toxins out but because my bladder isn’t working properly either I’m just filling myself up with fluid so i have constant puffy eyes, face & pains in my kidneys.. I’m basically damned if I do & damned if I don’t drink plenty of fluids! Any advice would be really helpful because I’ve not been told anything from any doctors.. Thank you

[Badger2024]

Sorry that I can’t be of much help as you have quite a few health conditions. That must be hard to manage. You really do need to get answers from your doctor. That said I find it a bit of a worry that you say you’re drinking so many litres of water that you have puffy face and eyes. Two litres is often recommended, up to three litres for some people. Some people far less. It’s actually dangerous to drink too much fluid and can cause cardiac problems among other things. I have no idea how much you should drink personally but I advise you to cut back to two litres for now and consult your doctor ASAP. Let us know how you go. Take care xx

[Wilson123 in reply to Badger2024]

hi Badger thanks for replying. I’ve cut my fluid intake to 1.5litres because I know I’m retaining it & I can’t seem to shift this puffiness in my face & eyes. All the doctors know my situation but I’ve had no advice as to what I should or shouldn’t do! I will of course keep you updated thanks again 😊

[Bassetmommer NKF Ambassador]

If you are retaining that much water, then you need to speak to our doctor. Fluid retention is hard on the heart and lungs. They can give you a diuretic to help with that. It is good you are drinking but not good the edema. Watch your salt intake as well. That holds the water.

When they say you had a AKI, acute kidney injury, and it resolved.... what is your current GFR? That would be indicated on your labs. I had a AKI, which I did bounce somewhat back but only to stage 3. That may be impacting the edema.

[Wilson123 in reply to Bassetmommer]

hi Bassetmommer thank you for your reply my doctors are all fully aware of how much fluid I’m retaining & I was discharged from hospital like this! As I’ve said they didn’t tell me what I should or shouldn’t be doing! I’ve reduced my fluid intake to 1.5litres. I don’t have salt at all which I also know isn’t good for you but I hate the taste. I’m waiting for an appointment for a dietitian as I’ve had no appetite for a long time either! My eGFR is 51, Creat 109 & CK is 624! I just haven’t got a clue what’s going on & even the doctors have been a little stumped with my results?! 🤷‍♀️

[bumblebee_tuna]

Did they tell you to drink so much water to “flush” toxins? Seems like you need to give your kidneys some time to recover from the AKI, but we are not doctors here, talk to your doctor please.

[Wilson123 in reply to bumblebee_tuna]

Hi lovely yes whilst I was an inpatient they told me to drink up to 2 litres of fluids & that was whilst I was on IV drips! I honestly felt like I was going to explode! I was catheterised too so I was emptying shall we say but I was also passing a lot of blood so that’s why I’m having a lot of investigations 🤷‍♀️ I should never have been discharged but they needed the bed! Plus I was waiting for a bed on a renal ward but there just wasnt one. I honestly think that they didn’t really know where to put me & along with the fact that I’m quite complex with everything that’s going on plus my medical history is very complex also so I don’t think they knew where to stay with me, if that makes sense 🤪 😀

[Partner20]

If you are currently hypothroid due to your RAI treatment this can certainly affect your kidney function. I understand that you have only been on levo for a very short time, so any testing done now will not reflect this treatment as levo takes 6-8 weeks to build up in your body. A further test should be done at this interval with any dosage adjustment carried out if appropriate.Unfortunately patience is needed when trying to find your optimal levo dosage, which will be he one that maintains your TSH in the bottom half of the range, although many feel their best when it is around 1.

Hopefully as your thyroid levels stabilise your kidney function will start to improve. Just keep an eye on your levels, but if FT4 improves without an accompanying improvement in FT3, an endo referral may be needed.

Just be cautious with the amount of water you are drinking as too much can do as much harm as too little, particularly if your kidney function is impaired.

[Wilson123 in reply to Partner20]

Thank you lovely I’m not a very patient patient but I understand that I have to be patient & hopefully 🙏🏼 things will start improving. I’m still under an Endo but I’m currently still seeing Nuclear Medicine as they were the ones who carried out the RAI. I’ve also reduced my water intake to 1 litre 👍🏻

[Partner20 in reply to Wilson123]

When thyroid conditions are concerned patience is definitely a virtue!If your thyroid levels are indicating that you are now hypothyroid due to RAI, your GP can begin treatment based on those blood test results given your recent surgery. Just be prepared for the 6-8 week wait after treatment initiation and in between each dosage adjustment. As you are symptomatic I would discuss this with your GP as soon as you can. I hope your kidney function will see an improvement when your thyroid levels optimise.

[Wilson123 in reply to Partner20]

Thanks got your reply lovely but I’m not under my gp for my treatment I’m under a Endo & Nuclear medicine as I had Radioactive ☢️ Iodine treatment not surgery back in February. I have since become very hypothyroid & have since started on 100mg Levothyroxin which I’m hoping will help resolve everything in time & pray that there’s no lasting damage to my kidneys 🙏🏼

[Partner20 in reply to Wilson123]

Glad to see that your endo initiated your levo treatment, which your GP will probably continue in the future.Make sure you get your thyroid levels retested 6-8 weeks after beginning treatment to see if the dosage needs adjusting. Keep a record of all your results so you can chart your progress. If you do not currently have online access to your results then arrange this now via the NHS app and/or your practice system.

You have been prescribed a reasonable dosage which your endo may think is your full replacement dosage using the weight calculator. However, if this is not sufficient to alleviate your symptoms you will need an increase. The normal target for TSH when on levo is between the bottom and the middle of the range, with many people needing it around 1 or so. When my partner had a high TSH which caused kidney damage his consultant gave him a TSH target of 1.

Hopefully your thyroid levels will optimise quickly and your kidney function will show a corresponding improvement too.

[pghgal]

I think I would wait and get another blood test to check your egfr and creatinine in a couple months since the dye might have caused a sudden drop. These numbers change all the time it seems

[Wilson123 in reply to pghgal]

Thanks lovely my latest blood test shows that my EGFR has reduced & my Creatinine has reduced from 600+ to 500+ so we’re going in the right direction now 🙏🏼 they’re monitoring everything & keeping a closer eye on me now so hopefully things won’t get any worse 🙏🏼

[Lucido]

No patient should be left to wonder about their health. You need a consultation with your doctor or a doctor. In the US you can hire a health advocate. If not there, can you call the health insurance admins? Someone needs to get your doctors to cooperate with you. Since you were in the hospital, so they have a social worker? Someone needs to help you understand your medical conditions. You need to advocate for yourself or get help doing so. Yes the doctors are busy, yes the health industry is overwhelmed but push for answers. You are just as important as anyone else. If nothing else start writing letters with copies to all involved. Patients do "fall through the cracks". Make enough noise and someone will listen.

[Wilson123 in reply to Lucido]

hi lovely I’m in the UK & I’m not one to sit back & I did make myself seen & heard & if I’m being honest I think that’s why they discharged me because I was on the ball & basically kept telling them that something was wrong! There was just no communication from the nurses to the doctors. I was taking photographs of my catheter full of blood because this information was not being passed to the doctors! It was an absolute shambles & a nitemare as a lot of the nursing staff didn’t have a clue what they were doing. I write everything down & when I’m well enough I’m certainly going to make a formal complaint about neglect etc. I’ve already made a complaint from when I was in there first hospital! That’s currently being investigated so yeah I went from 1 hospital to another & it was literally like going from the frying pan into the fire! I will never fall through the cracks because I’m always on the ball but you put your faith in nurses & doctors but when you seen to be more knowledgeable than them it’s very scary it really is!