How to find the cause and to get doctors to take you seriously?

Hello,

I am UK based and have suffered with vitiligo since I was about 14. It is only over the last 3 years that it has begun to rapidly spread across my body and now I am very self conscious and it is a constant daily battle.

I have seen GPs several times but they have just brushed it off because it's 'only cosmetic' and there's apparently 'no cure'. Or they simply don't even know what to say because they've never seen it before.

But I have read about several treatments that are available on the NHS for vitiligo - why won't any of them help me with this??

I had an appointment in June and the GP had the same attitude as usual 'this isn't my specialty so I can't help you' sort of thing. But I broke down a little and told her how depressed I had been feeling and she said she would refer me to a dermatologist. However, I heard nothing up until now when I have received a letter saying I have an appointment with a dermatologist miles away from where I live at the end of OCTOBER. Thats 4 months after my initial appointment date!

So what I'm asking is, do I really need to see a 'dermatologist' to be treated or should be GP be able to prescribe topical creams etc?

My patches have been spreading rapidly over the past couple of years. I'm getting married next Spring and I'm worried that they will have spread to my face by then if I don't at least attempt to get some treatment.

I've been trying lots of natural methods myself and have changed my diet significantly but that doesn't seem to be helping.

I just want to find out the cause of it - there MUST be a cause??

Does anyone else share my frustration and do you have an advice about how to get treatment quickly?

Thanks

Hi Flavio and Kevin,

Thank you for your replies!

Yes it seems like the NHS is so stretched they don't seem to have to time or knowledge to deal with issues like ours which is so frustrating because it is more than just cosmetic for us!

I am ADAMANT that there must be some underlying issue that is causing the vitiligo! But they don't seem to be bothered about finding the cause!

I am very into natural medicine (I don't genuinely go to the doctor for anything I hate taking anything that isn't natural) but I am running out of ideas to treat this myself!

I have always had a healthy balanced diet but since January I have made a more conscious decision to eat as healthily as I can. I have almost 100% cut out carbs, try to avoid gluten and dairy (I only drink almond milk now) and eat lots of fresh fruit and veg. I've stopped drinking coffee and only drink alcohol at the weekend in moderation.

I've been taking gingko bilbao for about a year, alongside other supplements - vitamin D, C, E. I drink green teas and other detox teas (I'm currently trying a vit B1 tea)on a daily basis.

I use heliocare protection tablets and factor 50 when I am in the sun.

I have even recently tried 'tan tablets' which are a mixture of copper and l-tyrosine but that doesn't seem to have had any effect.

Any suggestions about what else I could try? I feel like I'm just stabbing in the dark without knowing the cause. Pumping all these supplements into my body when I have no idea if I need them.

I would love to treat this myself as doctors have been so frustrating!

Replies

Hattie Rose August 23, 2016 at 7:54pm

Hi Flavio and Kevin,

Thank you for your replies!

Yes it seems like the NHS is so stretched they don't seem to have to time or knowledge to deal with issues like ours which is so frustrating because it is more than just cosmetic for us!

I am ADAMANT that there must be some underlying issue that is causing the vitiligo! But they don't seem to be bothered about finding the cause!

I am very into natural medicine (I don't genuinely go to the doctor for anything I hate taking anything that isn't natural) but I am running out of ideas to treat this myself!

I have always had a healthy balanced diet but since January I have made a more conscious decision to eat as healthily as I can. I have almost 100% cut out carbs, try to avoid gluten and dairy (I only drink almond milk now) and eat lots of fresh fruit and veg. I've stopped drinking coffee and only drink alcohol at the weekend in moderation.

I've been taking gingko bilbao for about a year, alongside other supplements - vitamin D, C, E. I drink green teas and other detox teas (I'm currently trying a vit B1 tea)on a daily basis.

I use heliocare protection tablets and factor 50 when I am in the sun.

I have even recently tried 'tan tablets' which are a mixture of copper and l-tyrosine but that doesn't seem to have had any effect.

Any suggestions about what else I could try? I feel like I'm just stabbing in the dark without knowing the cause. Pumping all these supplements into my body when I have no idea if I need them.

I would love to treat this myself as doctors have been so frustrating!
- Hattie Rose > Hattie Rose August 24, 2016 at 7:39am
  
  I can't see any suggested reading?
  What do you mean an allergy to almond milk causing the vitiligo? Is this a theory?
  I've had vitiligo since I was 14 and have no reason to believe almond milk would be a problem) that's only something I have started using recently as I'm avoiding dairy).
  But let me know if you've know of any reaso why I should avoid it!
  - Maria Djordjevic > Hattie Rose August 25, 2016 at 11:21am
    
    I completely agree with Flavio, before make any diet changes, it would be the best to do some food alergy tests (not ones that are computer based,there are tests that are done directly from the blood). It is essential to cut out any alergen, cause as far as I am informed those alergens could lead to inflamation process in the body, which could make vitiligo even worse...
    
    Unfortunaltely, I don't think that you could get some usefull information from dermatologists,they will put you in deeper despair with their claims that there is nothing to do about it, and etc...
    
    I would search advice from funcional medicine practitioner, because they will observe your body as a system... I also strongly believe that vitiligo has a root problem in the body, and with eliminating the root problem we can stop it from progression. Do not lose hope, I am sure that there is something that can be done!
    - Hattie Rose > Maria Djordjevic August 25, 2016 at 8:21pm
      
      I agree! There IS a cause which is why it's so frustrating when nobody will help you to find it. You're simply told there's no cure sorry.
      
      Thank you Maria, yes I think it could be very frustrating to wait so long to see a dermatologist for him to say exactly the same thing!!
      
      What allergy tests should I ask for? Are there deficiency tests I should ask for too?
      
      I think I will need to be specific with my GP - she just frowns and stares at me blankly when I speak about it.
      But maybe if I can tell her exactly what I need her to do that will work.
      
      I would love to see a functional practitioner but unfortunately I'm an on a very low income so I don't think this will be an option for me. Unless anybody can recommend somebody or a way to go about doing this cheaply.
      
      I'm also intrigued, do any of you personally have any success stories to tell - have you managed to find your cause and how did you find it?
  - Robot > Hattie Rose August 24, 2016 at 2:06pm
    
    My allergy to almond is just an example. Disregard it.
    
    The suggested readings are the links. Did you have a chance to read them?
- Robot > Hattie Rose August 24, 2016 at 2:58am
  
  Please don't skip the suggested reading...
  
  It's all there.
  
  Btw, what if you have allergy to almond? I do...
kevin August 23, 2016 at 11:42am

And flavio is right, doctors (almost all) dont know how to deal with vitiligo or how to address it. As a matter of fact they dont know how to address any degenerative disease the correct healthy way... they go by the text book and prescribe one with a drug or cream or what ever it may be and then get paid for it. Vitiligo as with any degenerative problem must be attacked with multiple angles. Diet, miniscule stress, enough sleep, good supplement habits, keeping toxic food/drinks/drugs ect out of the body. Once you've been eating right for a few months i personally would start uvb or sun exposure because your body should be ready to accept it by this time. If you try the sun or uvb on a crappy diet, it could make things worse.
kevin August 23, 2016 at 11:22am

Specifically, how did you change your diet? What are you eating? What did you eat in the past??
Nomad Traveller August 23, 2016 at 9:11am

Hello Hatfield,

I see where you are coming from. My GP keeps brushing me off claiming it's a "cosmetic"... It's as if they think as long as your not dying you will be alright but they don't realise the impact it has on our lives. What makes it worse is that there are a lot of treatments which have worked for people topical creams, lasers etc, what right do the GP's have to deny us such treatment.

My GP has now agreed send me to some clinic where they'll take pictures and decide on whether I'll get to see a Dermatologist but they can apparently prescribe medicine so let's see.

An A&E doctor suggested that I ask for a private referral from the GP instead and pay to see the NHS Dermatologist quicker..
Maybe that could be an option for you
Robot August 23, 2016 at 8:10am

Hattie,

Doctors don't have a clue about this disease. Sorry for being strait forward.

Awareness at:

http://vitiligomap.com/vitiligo/vitiligo-causes

and

http://vitiligomap.com/treatment/how-to-treat-vitiligo

and

http://vitiligomap.com/groups/promising-vitiligo-treatments/forum

That's my humble 3-year research.

__________

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