Need To Pick Brains Again!

[LLH76]

Hey, so as from previous posts I am undiagnosed but on hydroxychloroquine.

I have a lot of GI problems but don’t know if they are related or not.

I had blood tests done only yesterday to help with a gastro referral, however, got a message from gp receptionist to say a prescription was waiting for me. When I called them they said it was for vitamin D, confusing for me as I work outdoors!!

Anyway, I thought I’d pick up a copy of my results to keep with the rest of my rheumy paperwork.

Something that flagged up to me, but not mentioned by them was that my kidney function result was GFR 80ml/min.

Again, had a bit of blood in urine and a little bladder scare around Xmas but all with no symptoms, so completely unaware.

On reading both the notes underneath the result and looking it up, it suggests I have some sort of kidney involvement which I hadn’t expected, so far as to say it says that range is classified as stage 2 CKD?!

What I would really like to know is have I understood it correctly and should be making an appointment with gp incase he’s missed it or am I worrying over nothing? So awkward because you don’t want to look like a hypochondriac but Vit D deficiency and kidney involvement might support my lupus diagnosis?

[Lizard28]

I was deficient in vitamin D as well on my last blood tests, I'm on hydroxy, my gfr was 53 which is stage 3 ckd, also I had b12 and folic acid deficiency. I've not been able to eat properly for a while since the last flare so I'm not surprised really. The kidney diagnosis surprised me and I wondered if that's why I'm on all these vitamins, I've had three blood tests now every four weeks and good news my gfr went up to 56, still stage 3 but going the right way, getting another blood test in a week so I'm hoping it continues to rise, fingers crossed, I have MCTD and I'm wondering if it's all connected.

[Cas70]

There are so many symptoms and possibilities with Lupus that it is easy to feel a hypochondriac- try to dismiss that thought. I was given Vit D immediately before diagnosis and B12. It really helped, I have lived in the sun most of my life but we can easily lack Vit D. Take it and see. Good luck

[LLH76 in reply to Cas70]

Hey Cas70, I’m B12 deficient as well, but to be honest it’s the kidney but that’s worrying me more, as I hadn’t been looking for anything involving them, but if my bloods say 80 ml/min then surely I need to flag it up?!

[nanleighh in reply to LLH76]

Hi LLH76, The standards that I was taught in nursing school is GFR greater than 60 is normal. In order to be diagnosed with chronic kidney disease you have to be tested three months in a row and have a GFR of less than 60. Also it’s not uncommon for women to have blood in urine around their cycle time. There is chronic vitamin D deficiency in all populations. Mine was very low seven years before I was diagnosed with lupus and I have been supplementing ever since. I live in Arizona which is one of the sunniest places on earth. It is a very puzzling phenomenon, one of the rheumatologist that I saw Said she thought it was food related, because just about everybody she tested was low. Before I was diagnosed they did a complete work up on me in 2007 Because I had severe joint pain mostly in my feet and ankles to the point where I couldn’t walk I am pretty significant fatigue. They said the only thing was my vitamin D was low so I started the supplementation and in about nine months I felt better. I think it was because I went into it a period of remission and like you I was sero negative. It wasn’t till seven years after that that I was officially diagnosed with lupus after my arthritis came back, but it was also accompanied with pretty profound muscle weakness, and the rash on my face and neck. At that time I was ANA positive And had positive anti-RNP Antibodies. It’s so perplexing because you think you’re a hypochondriac or something. When they told me I was normal I believed them, because having been in the medical field I thought you had to have the blood test to support the symptoms or there was no diagnosis. I have come to believe that it’s not true though, As many people are symptomatic with no abnormal blood work to support the diagnosis. It’s difficult because some physicians won’t even entertain the thought that somebody could be sick unless they have the blood work to support it. I know this is a very scary time for you, but just keep on tracking your symptoms and pushing for referrals when you need them. Good luck with your G.I. consult. I have had a pretty significant G.I. problems, stomach pain and nausea. I have greatly improved however since I stopped eating any dairy. I really feel for you and I hope they get to the bottom of your diagnosis soon. XOXO Nan

[Cas70 in reply to LLH76]

So sorry this went into my junk mail. Nanleigh gave a good reply - so I would keep asking for regular blood tests to put your mind at rest. It will do you no harm to take D and B12 in moderate dosage while you wait - best of luck - we have to fight for medical attention as well as the rotten illness!

[Chanpreet_Walia LUPUS UK]

Hi LLH76,

We are not medically trained here therefore, we cannot comment on what your blood test results indicate.

If in doubt, you should always discuss your concerns with your doctor. This can ensure that you receive the correct advice and treatment.

Although vitamin D is best obtained through sunlight, according to The Lupus Encylopedia, there can be certain factors that can decrease the absorption of vitamin D in the body. A deficiency of vitamin D can be due to darker pigmentation of the skin (preventing UV light from penetrating the skin) and being overweight (vitamin D gets stored in the fat and doesn’t reach the bones). Low vitamin D levels are usually seen in lupus patients because they are advised to stay out of sunlight as this can contribute to lupus flares.

Lupus can affect the kidneys; we produced a booklet on lupus and the kidneys which you can read here lupusuk.org.uk/wp-content/u...

For information on the specific tests and criteria that are needed in order to make a diagnosis of lupus, read our blog article here: lupusuk.org.uk/getting-diag...