Unbelievable: Sorry had to both ask a question... - CLL Support

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Unbelievable

pet-lamb profile image
15 Replies

Sorry had to both ask a question and have a rant .

I had vitamin D blood test done last week after asking doctors for months to allow it well today I hear (phoned for results ) that my vitamin D results have came back abnormal this follows on from my other post for abnormal bloods .anyway I'm informed that the doctor wants to see me ok when well that's the problem there are no appointments until the end of April !!!!!!!!

My question to the kind people on here is could the two blood results be linked .Thank you for reading this

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pet-lamb profile image
pet-lamb
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15 Replies
mrsjsmith profile image
mrsjsmith

Hi pet lamb !

Rant away ! Not being able to see a GP for a month is disgraceful ! Is it a small practice ? Perhaps I am fortunate being in a large London practice, but I never wait for more than a week, and that’s for my favourite Doctor ! Do you live near the surgery ? Eyeballing the receptionist might get a quicker appointment, or could you request a telephone consultation ?

Hope you get it sorted soon

Colette

pet-lamb profile image
pet-lamb in reply tomrsjsmith

Sorry mrsjsmith.I thought I'd replied to your message

I live 10 minutes for

My large surgery but sadly 3-4 weeks wait to see a doctor any doctor is normal here. .

mrsjsmith profile image
mrsjsmith in reply topet-lamb

No worry,

I am just sorry you are having such a long wait, and I do understand why you don’t want to change surgeries as it’s not always that easy. Is it worth trying the Doctor has said they need to see me re my abnormal blood tests ? Lay in on thick if you can. But please try not to worry.

Colette

pet-lamb profile image
pet-lamb in reply tomrsjsmith

Yes I'm going tomorrow to do just that maybe another receptionist can help,worth a try .

mrsjsmith profile image
mrsjsmith in reply topet-lamb

Good luck 🤞fingers crossed.

Panz profile image
Panz

I have my labs run once a month and every 3 months they do the Vitamin D and every 2 months the IgG, IgA, IgM and because I have no IgD they run that every 6 months to to see if there has been a change. I have never had a Vitamin D issue but they still keepma close eye on it. I do get IgG infusions every 4 weeks and I am on Imbruvica 420mg.

Since you do have an issue with the Vitamin D I would very strongly insist the run it from time to time. Good Luck!

🙏💕☘️😍

pet-lamb profile image
pet-lamb in reply toPanz

Thank you panz I ask every year for vitamin d b12 ferritin folate and thyroid bloods it's a struggle they eventually do them but always insist there within limits even though I know there too low .but I get no where with these doctors. .this is the first time they have said there abnormal .this following on from recent abnormal fbc .I would of thought they'd want to see me before a month's time.

Panz profile image
Panz in reply topet-lamb

God Bless You! This just isn’t right...any chance of making a change in the doctors you see?? Please keep the community posted on how you are coping and good luck! 🙏💕☘️😍

mrsjsmith profile image
mrsjsmith in reply toPanz

Panz,

Sadly there is a huge difference between the U.K. and US health systems and ‘insist’ is perhaps not a good choice of words when it comes to what we can expect from our health services.

Colette

pet-lamb profile image
pet-lamb in reply toPanz

Thanks panz will keep everyone updated. don't want to change doctors until I'm well again .my sister in law moved house while being treated for cancer and she had a job getting another doctor to take her on she was terminal. I'm not thinking this is me but I would rather not struggle to find a doctor while I'm waiting to see what's wrong with me.

cllady01 profile image
cllady01Former Volunteer

pet-lamb, here is a link to National Institute of Health Fact Sheet for Professionals regarding Vitamin D:

ods.od.nih.gov/factsheets/V...

I hope it answers some of your questions--whether there is a link or not, having Vitamin D at a good level is important to overall health.

The waits we have to have to get seen can be maddening, however, I would assume the Drs. do not see anything that is so pressing as to need seeing immediately. (I am in US, so speak of what I do not know in relation to UKs different medical situations.)

Please keep us informed as you do get more information. And, if you are able to do so, get hard copies of all your test reports to give you a way to track. Take a deep breath when you find yourself stewing or worrying--it can calm you over time and hopefully keep your blood pressure from rising. Also, if you can and weather permits, get in a good walk daily. And I totally understand the frustration you express.

pet-lamb profile image
pet-lamb in reply tocllady01

Thank you cllady01

Cammie profile image
Cammie

Most patients with cll should be given priority when booking appointments.

Certainly in my surgery there are slots kept back for emergency appointments which are used for me!

I think this simply may be that you have an overzealous receptionist who, of course, will not understand the medical situation with cll patients.

You must insist on an appointment!

You may also find that telephone consultation is available with the GP as it certainly is within many forward looking practices.

Like all of us you must manage your medics to ensure you obtain the correct service.

pet-lamb profile image
pet-lamb in reply toCammie

Thank you Cammie for your reply .I'm still waiting to see if I have cll

I have had two abnormal blood results (fbc) in the last few weeks I've seen the doctors and there waiting 6 months to see if there is any changes in what will be more blood tests in September. if there still showing concerns I will be sent to see the haematology department. at present I have a diagnosis of mild on going lymphoctoisis etc( please see other posts I'm typing with one finger on the kindle.) And now a abnormal vitamin d result. I've just picked up my results again (I all ways try to get them printed out)

These results show below normal range vitamin D at 37nmol/L our area normal range is >50 to 75.

I have managed to get another appointment for the 12th this is a phone appointment.

I'm aware that my vitamin d has dropped from 54 from last july and from 48 this time last year .I'm annoyed that I have been telling the doctors I suspect leaky gut problems for years and they took no notice. To me these latest results show I am either not making or maintaining vitamin levels .I have hashimotos I'm 67 years old almost 68 yrs and eat gluten free . these are I think know problems for vitamin absorption and maintenance. i also eat dairy full fat yogurt and cheese best butter and drink semi skimmed milk. i'm frequently daily really outside and several times a week I work in the allotment. I'm also not happy that the receptionist told me I had a abnormal vitamin D result .when in fact it seems to be just another insufficient result.

DriedSeaweed profile image
DriedSeaweed

Looks like there are a couple CLL studies on Vitamin D to keep an eye on. The first one wrapped up in February it appears so maybe they will publish soon...

Curcumin and Cholecalciferol in Treating Patients With Previously Untreated Stage 0-II Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma

clinicaltrials.gov/ct2/show...

And still ongoing...

Cholecalciferol in Treating Patients With Newly Diagnosed Non-Hodgkin Lymphoma or Chronic Lymphocytic Leukemia With Vitamin D Deficiency

clinicaltrials.gov/ct2/show...

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