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new diagnosis

After having experienced passing slightly pink urine I visited my GP who ordered a CT scan. This identified several large staghorn stones in both kidneys. The...

After having experienced passing slightly pink urine I visited my GP who ordered...

Katycodfish

•8 months ago

1 Reply

Doctors Strike- Cystinuria Clinic 5.1.24

Hey, Has anyone heard if the clinic is still going ahead this Friday because of the strikes?

Hey, Has anyone heard if the clinic is still going ahead this Friday because o...

LydiaDonaldson

•11 months ago

2 Replies

Are vegetable proteins okay?

(Skip to the last paragraph if you just want to read the question. Everything else is our path to diagnosis). Hello everyone, my son is now three years old....

(Skip to the last paragraph if you just want to read the question. Everything el...

Samil90

•1 year ago

2 Replies

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New treatment, diagnosed long time ago.

Hi, new to the group, very glad to have found it! I was diagnosed with Cystinuria when I was 18. Have other health issues just learned kidney function has...

Hi, new to the group, very glad to have found it! I was diagnosed with Cystinuri...

Happyfeet48

•1 year ago

1 Reply

Tiopronin Supply

Hi I am very new to this group and wonder if you may be able to help me. My cystinuria has been alife long battle, too many surgeries to mention. For the past...

Hi I am very new to this group and wonder if you may be able to help me. My cyst...

Wazza1454

•2 years ago

1 Reply

Low salt diet on holiday

Our 3 year old has cystinuria, we are hoping to go away on holiday abroad next year and wondered how other cystinuria patients have managed trying to get a low...

Our 3 year old has cystinuria, we are hoping to go away on holiday abroad next y...

Qiu910

•2 years ago

2 Replies

Taking R lipoic acid

I have been taking alpha lipoic acid for 18 months now. For the last 10 years everytime I’ve been to the clinic twice per year at least my stone loading...

I have been taking alpha lipoic acid for 18 months now. For the last 10 years ev...

Leaowen

•2 years ago

4 Replies

Interesting YouTube discussion on kidney stones

Matt Bultitude from the Guy's Hospital stone team taking part in an interesting video discussion covering many aspects of kidney stone chemistry, formation and...

Matt Bultitude from the Guy's Hospital stone team taking part in an interesting ...

neilsss

Administrator•2 years ago

2 Replies

GENETIC TEST

Good morning, did any of you do a genetic test? In my case, my son has developed the disease and only I am a carrier, his father is not. I have been reading...

Good morning, did any of you do a genetic test? In my case, my son has develope...

Sugab1421

•2 years ago

3 Replies

What dosage of R-Alpha Lipoic Acid is needed to prevent kidney stones?

Hello, Wondering whether anyone can help please. I am a Cystinuria patient, and am looking at taking Alpha Lipoic Acid tablets to prevent stone formation. I...

Hello, Wondering whether anyone can help please. I am a Cystinuria patient, and...

man013saie

•2 years ago

7 Replies

Business As Usual

Great to return to Guy’s Hospital last Friday after a break of three years (was due to go in April 2020). Good to see the gang again

Great to return to Guy’s Hospital last Friday after a break of three years (was ...

AFCWombles

Administrator•3 years ago

1 Reply

Supplements Query

Hi Everyone, This is my first time posting here. Are there any supplements that should not be taken by people with cystinuria? I am exhausted all of the time...

Hi Everyone, This is my first time posting here. Are there any supplements that ...

MagsBC

•3 years ago

3 Replies

COVID Vaccine

Hi, just wondering when we will get the vaccine. Are we class as vulnerable. Thanks

Hi, just wondering when we will get the vaccine. Are we class as vulnerable. Tha...

Tkirrage

•4 years ago

7 Replies

advice help please mum of a cystinuria son

can anyone advice me ways to help my son please read my story thank you x

chell70

•4 years ago

5 Replies

Vitamin D

Hi There has been a lot of talk recently about the benefits of Vitamin D but I am not sure how safe it would be for my husband who has Cystinuria to take. Can...

Hi There has been a lot of talk recently about the benefits of Vitamin D but I a...

cazieboy

•4 years ago

4 Replies

Ct scan for diagnosis

Good morning I’m a new member here so a bit of advice would be very welcome.Ive suffered with passing the odd stone for quite a few years now but never been...

Good morning I’m a new member here so a bit of advice would be very welcome.Ive ...

Hidden

•4 years ago

4 Replies

Contact with others :)

Hello! My partner has cystinuria and I wanted to see if anyone wanted to chat if you have it/have someone you care for who has it. Just want to connect with...

Hello! My partner has cystinuria and I wanted to see if anyone wanted to chat if...

K112

•4 years ago

5 Replies

Alpha Lipoic Acid (ala)

Has anyone tried Alpha Lipoic Acid (ALa) supplement. There is a trial going on in California with it. Just wondering if anyone has tried it.

Has anyone tried Alpha Lipoic Acid (ALa) supplement. There is a trial going on i...

English7

•4 years ago

5 Replies

Cystinuria medication

What medicine has worked best for cystine stones?

English7

•4 years ago

16 Replies

See below

Interested to know how long this cystinuria support page been here. I might have stumbled on it before but recently got an email about it. I welcome anyone to...

Interested to know how long this cystinuria support page been here. I might have...

Alembra

•4 years ago

3 Replies

Cystinuria support and resources?

Hi all. We are involved in a group discussing support for patients (or carers) with cystinuria and rare stones. We would be interesting to hear from you about...

Hi all. We are involved in a group discussing support for patients (or carers) w...

MattBultitude

Administrator•4 years ago

3 Replies

Support during lockdown

Good morning hive mind. I'd be interested to hear how people have sought and received support since the March lockdown. I've just opted for a phone...

Good morning hive mind. I'd be interested to hear how people have sought and rec...

AFCWombles

Administrator•4 years ago

6 Replies

Coping as a teenage stone owner

Hi, I am a parent of a 13 yr old cystinuria patient (diagnosed at 6-lots of stones) been stone free for years but currently she is really not managing well...

Hi, I am a parent of a 13 yr old cystinuria patient (diagnosed at 6-lots of ston...

Grayeyes

•4 years ago

18 Replies

Appointments

Good morning, I’m guessing that the upcoming appointments, I’ve got one for the beginning of May, are going to be postponed until this horrible situation...

Good morning, I’m guessing that the upcoming appointments, I’ve got one for the ...

F1Guy

•5 years ago

1 Reply

A Time to Say Thank You

The obvious place to give a huge shout out to all who work as part of our NHS. Thank you so much for all that you do, not just in these times, but at all...

The obvious place to give a huge shout out to all who work as part of our NHS. T...

AFCWombles

Administrator•5 years ago

1 Reply

Should I isolate for 12 weeks

I hope everyone is staying well both mentally and physically at this difficult time. As the spread of Covid-19 and the actions we are advised to take...

I hope everyone is staying well both mentally and physically at this difficult t...

Lr1968

•5 years ago

2 Replies

COVID-19 and Cystinuria

We have had a number of calls, emails and posts on here regarding the effects of COVID-19 on patients with cystinuria. We appreciate the current situation is...

We have had a number of calls, emails and posts on here regarding the effects of...

MattBultitude

Administrator•5 years ago

4 Replies

Classification

I hope everyone is staying safe, this might help

F1Guy

•5 years ago

1 Reply

Define Chronic

Is Cystinuria classed as Chronic

AwesomeAT

•5 years ago

Be the first to reply

Self Isolating

Anyone self isolating U.K. with Cystinuria I have a 12 year old

AwesomeAT

•5 years ago

4 Replies

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Posts - Cystinuria Support | HealthUnlocked

Cystinuria Support

new diagnosis

Doctors Strike- Cystinuria Clinic 5.1.24

Are vegetable proteins okay?

New treatment, diagnosed long time ago.

Tiopronin Supply

Low salt diet on holiday

Taking R lipoic acid

Interesting YouTube discussion on kidney stones

GENETIC TEST

What dosage of R-Alpha Lipoic Acid is needed to prevent kidney stones?

Business As Usual

Supplements Query

COVID Vaccine

advice help please mum of a cystinuria son

Vitamin D

Ct scan for diagnosis

Contact with others :)

Alpha Lipoic Acid (ala)

Cystinuria medication

See below

Cystinuria support and resources?

Support during lockdown

Coping as a teenage stone owner

Appointments

A Time to Say Thank You

Should I isolate for 12 weeks

COVID-19 and Cystinuria

Classification

Define Chronic

Self Isolating

Search posts

Pinned Posts

Latest poll

What has been your experience of access to healthcare support during Lockdown

Archive