Chronic kidney disease stage 3: Hi everyone I'm... - Thyroid UK

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Chronic kidney disease stage 3

Tweetypie28 profile image
22 Replies

Hi everyone

I'm a bit confused as usual (lol). I went back through my paper work after reading a post on here last week about chronic kidney disease. In one of my blood tests about 1.5 years ago, I noted I was stage 3 CKD. I didn't know anything about it it and neither the doctor or the specialist has said anything, nothing at all. So I didn't even give it another thought until now.

I've been researching this week and now getting anxious that the medical people are ignoring something that needs attention or at least keeping an eye on? I've read that CKD stage 3 needs regular blood tests to check it doesn't accelerate.

I'm 44 so it can't be age that has caused this.

Is it common to have CKD stage 3 with Thyroid disease?

I often get swollen ankles and puffy feet particularly left one and I just put it down to bad circulation or the thyroid causing me to bloat, but now read kidney disease can cause this. Sigh.

Why hasn't the doctor alerted me to keep an eye on this?

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Tweetypie28
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22 Replies
Jayne22 profile image
Jayne22

Hi there I'm now wondering as well.... Hypo for over 30 years but no one ever mentioned this could happen. Have also been on T4 the whole time and about to start adding T 3.

Had major surgery for cancer (not thyroid) last December and have had swollen ankles a few times in recent hot weeks here in Oz. have to wonder what else might be going on. Still focusing on thyroid as CA outcome was brilliant.

This whole business of to T 3 or not to T3, DHEA or not to and what about our kidney function the older we get really gives me a headache.

Hope someone can point us to some good info. Xx

Moggie profile image
Moggie

If you are hashi's then not only can your antibodies attack your thyroid and gut they can also attack your kidneys. Maybe do some research on google and see what comes up.

Moggie x

Jackie profile image
Jackie

Hi That can be due to heart or kidney disease. If you have not had a recent test for U`s and E`s ( kidney function) be sure to ask for them, at least 3 monthly at the moment. if not good , especially eGFR , ideally above 60, not a range. Ask to see a Nephrologist. Do not be fobbed off by GP with diuretics.If you want to give me your last tests, here or on a PM ( click on my name), I will be happy to help if I can. have had renal failure, total for a long time now, sometimes acute and Coma. I have had liver/kidney disease from birth.

Best wishes,

Jackie

merissa profile image
merissa

I have stage 3a, just bin for a ultrasound, no results yet!! Any way it seems, high blood pressure can cause kidney damage, parathyroid, hashimotos/ graves/ water infections. The autoimmune componant ( antibodies) attack all organs, such as liver, heart, kidneys, gallbladder and so forth. It is a mission of mine to sought out my immune system . X

Tweetypie28 profile image
Tweetypie28 in reply tomerissa

Oh gosh, it's all so confusing! Did your doctor send you for an ultrasound? I've got an appt on 1st March with my endo so I shall point out the CKD then and see what she says. Hope your results are positive for you x

merissa profile image
merissa in reply toTweetypie28

Deb, you need to insist, don't let them fob you off with only stage 3, It should be monitored, ask gp/ endo, what's causing ckd. Good luck, I ask for a ultrasound.

rosetrees profile image
rosetrees

I personally believe that Stage 3 CKD is almost a standard side effect of being hypo. I discovered I had the same thing last year, with a GFR of 52. My GFR had steadily declined since (I now know) I became hypo around 6 years ago. Unsurprisingly I was told neither of those things.

Why don't doctors tell us about declining kidney function? I believe it's because they don't know what to do about it. I did my own research and came up with these things:

1) Take alpha lipoic acid. For me (and a telephone contact) this worked like a magic charm in improving function

2) Ditch the tea and coffee and drink green tea and detox teas

3) Improve your diet - aiming for paleo

Tweetypie28 profile image
Tweetypie28 in reply torosetrees

Thanks for this advice Rose, it's just such a shame we have to do the research and the docs don't advise x

Have you or do you have a high TSH? I have always had TSH out of range. When I saw Endo he told me its either one of three things. Pituitary, thyroid or kidneys. I had blood test for kidneys and luckily it was ok. They should have told you even if it's only monitoring at this stage. But I would have thought you should have been referred to a kidney specialist for them to monitor not Endos. I am about to pay to get hold of all of my results etc hospital have because I no longer believe what they say.

I am in the same boat.

Seems the NICE guidlines rule the GP's.

I know now they do test things without our knowledge as when I got my medical records I was also very shocked to realise that my Kidney's and liver were being tested.

I believe it is when it reaches stage 3 that your bloods should be tested more often .

I also found the "Microsomal" antibodie tests in my records

I also realised that they were recording "check autoantibodies" in my consultations records BUT most of the time there was no "results" recorded in the relevant section in my records nor in the copies of lab reports that I asked for ?????

Does that mean they were recording as testing but not actually performing the test "the mind boggles"

For many reasons it certainly pays you to always ask for copies of ALL blood tests with ranges.

x

helvella profile image
helvellaAdministrator in reply to

As I understand, "microsomal" was the name given when these antibodies were first identified. At that time no-one knew what the antibodies attached themselves to. In time it was discovered that there antigen was thyroid peroxidase. Hence they were renamed as Anti-TPO antibodies.

However the term "microsomal" continues to be used in some backwaters.

Rod

in reply tohelvella

This was only 1-2 years ago "microsomal" were mentioned so we must still live in the dark ages here lol

There were no other records of AB results in either labs or medical records so ?? I can only believe they said they were doing them but didn't on a few occasions :(

in reply tohelvella

Rod

Do these Anti- TPO antibodies attack your liver and kidneys?

helvella profile image
helvellaAdministrator in reply to

As I understand, these antibodies do not attack anything!

Antibodies are produced (e.g. in lymph nodes and thyroid) which then attach themselves to their antigens. This combined antibody PLUS its antigen may then cause some other cell (a lymphocyte) to "attack".

This link is way beyond my brain, certainly ion a Sunday evening, but is well worth at least a little look...

thyroidmanager.org/chapter/...

Rod

in reply tohelvella

So far it seems to be making sense a little for me as I re call I first had Vitiligo before any of these horrid thyroid symptoms.

When I went to dermatology a few years ago the Proffessor said this vitiligo is often linked with Thyroid issues.

helvella profile image
helvellaAdministrator in reply to

Indeed - and from the link I gave above, this quote:

Associated with autoimmune thyroid disease in some patients are other organ specific autoimmune syndromes including pernicious anemia, vitiligo, myasthenia gravis, primary adrenal autoimmune disease, ovarian insufficiency, rarely pituitary insufficiency, alopecia, and sometimes Sjogren’s syndrome or rheumatoid arthritis or lupus, as manifestations of non-organ specific autoimmunity. Of particular interest recently has been the description of pituitary antibodies and growth hormone deficiency in a around a third of patients with autoimmune hypothyroidism, implying the existence of a substantial reservoir of pituitary autoimmunity in these patients but further work is needed to confirm these findings and to understand the basis for the autoimmune response against the pituitary.

Rod

helvella profile image
helvellaAdministrator in reply tohelvella

I find pituitary antibodies of particular interest as a potential cause of some of the symptoms that seem to fail to resolve in so many of the people here.

in reply tohelvella

Rod I hope you don't mind me asking but feel you may be able to identify something for me.

I have been through untold amounts of psychological distress which has been relentless for the last 18 months.

I have been reduced to almost a zombie as in emotional shutdown by I believe a protection mechanism that kicked in to protect me hemce the shut down also absolute mental exhaustion.

3 days ago I started my fight back to some form of recovery where I started by taking daily 2x Nutri Adrenal extra, 1 Vit B 12 5000 and 1 B complex extra. Things have improved dramtically. I am not so mentally exhausted and much more alert. Any ideas why based on what I have taken so far and the improvement in such a short time.

I have reason to think along the Hypothalmus/ Pituatory/Adrenal Axis. What are your thoughts ?

helvella profile image
helvellaAdministrator in reply to

B12 deficiency can act as a stressor. All the B vitamins appear to have profound effects related to thyroid (and other) disorders.

I know little-to-nothing about the real effects of Nutri Adrenal Extra.

Do be careful that you don't take in too much B6 - although a decent level is very important, too much can have unwanted effects. With B complex and NA Extra - you could be getting pretty high.

It is excellent that you are feeling noticeably better - it is wonderful!

in reply tohelvella

Thank You

Coincidentally I have been sitting this afternoon with these supplements and listing everything as in % and RDA to begin that exercise of preparing a spreadsheet to make sure I'm not overloading.

Maybe as you have already highlighted, too much B6 is contra indicated so I maybe should post tomorrow for advice on what "NOT" to exceed.

I see B12 5000 is way over loading according to the RDA but have learnt the excess is excreted :)

Thanks for all of your help it is always so very much appreciated by myeslf and others :)

helvella profile image
helvellaAdministrator in reply to

It is my belief that each and every test request should produce one of two things: a result or a "we did not do this because ..." report.

Every test request should be recorded in the patient's notes. And every result or "did not do" report should be there alongside - allowing only short but reasonable time for the lab's response.

Anything else is, surely, unprofessional and unethical?

jacqui1957 profile image
jacqui1957

hi iv had kidney desease since 1986 and go to hospital for regular check ups every three months only found out on friday 17th october 2014 that one is only working 23% to the other one which is fine and im on that much mediation with my detering health also diabetic under active thyroid water retention so i know first class on swelling ankles and rest of body not nice at all and so far all im doing is having my blood taken and water samples done not getting anywhere like you say they dnt like to tell u whats actually wrong with you

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