White Spots In Skin

[pratikdbl]

Dear All,

Few months back my wife developed white spots around her neck. We went to the hospital and doctor said it is pityriasis versicolor and is normal. So he gave her a cream. After using for few months we noticed that some spots are still increasing (around her ear) but some old spots has gone away. We again visited doctor and he changed the medicine which did not worked. So that doctor referred to his senior doctor. We visited that senior doctor. At first he was also confused. But looking at one particular spot he said it may be vitilogo.

We were shocked and immediately went to another doctor in St. Louis Hospital thinking we will do test like Wood's Lamp test or boipsy. The doctor we visited was Dr. Parichart. We were shocked with her behavior. Without examining, just looking from a distance of 1m and without asking history she just said it is vitiligo. When we asked her if we can do test or how we can be sure, she was just angry and just said it is vitiligo and its very hard to cure. Just go and take the medicine.

Now we are in much tension. The medicine that Dr. Parichart gave has many side effects (some even has developed skin cancer using this medicine) and my wife has not yet started it. We want to become sure first by doing skin test. Please give us idea where we can directly do skin testing (Wood's Lamp or Biopsy). Any good doctor/hospital you recommend who explains and listen to us.

By the way if anybody has the same skin problem like ours, please share your idea. After googling we are also guessing if it is pityriasis alba. Because we read that this disease start becoming of chlorinated swimming pool in some people. And as far as we remember, those spots was developed around the time when we had started swimming. Another thing is, some old spots has gone away. If vitiligo, how those spots was gone.

Please help us. We are very much in stress.

Thanks.

Pratik

[pratikdbl]

Anyone, please!!!!

[richard_smith237]

Some Doctors are quite arrogant. If you are not satisfied, the simple solution is to try another hospital until you are satisfied. I hope other members will provide you with the some good recommendations.

I have two experiences of poor treatment.

1) At Samitivej - Terrible back pain after a wakeboarding accident. The doctor took one look and told me I'd pulled a muscle. Being quite active I've pulled numerous muscles in the past, this didn't feel the same, I questioned his diagnosis, suggesting my symptoms of numbness in my legs indicated something else. I hobbled out and went directly to Burmungrad where I was x-rayed immediately then given an MRI which identified 3 herniated disks. The conclusion here: The Doctor at Samitivej was human, he was at the end of his shift, tired and lazy, his Give a F$%K factor was non existent. I should have complained to the hospital but didn't. Note: I continue to go to Bumrungrad if I have have a back issue, otherwise every other time I've been to Samitivej I've been happy.

2) At Samitivej I had an UltraSound on my legs to evaluate if a DVT had cleared up. The Doctor who ran the UltraSound did so a little too quickly for my liking, when I asked for her to make another pass she got a little shirty. I explained that a DVT could kill me (and in fact nearly had with a P.E), if she won't satisfy me, I'll get someone who can. Her demeanour improved and she made further investigation in far more detail and to my satisfaction.

THUS: If you are not satisfied, Force them to do a more complete job or move to another hospital. Do not accept the diagnosis until you are convinced the Doctors have dealt with the situation professionally.

Good luck.

[Sheryl]

Actually vitiligo is usually diagnosed clinically based on appearance and the tests you mentioned are used only when there is doubt in the doctor's mind.

Pityriasis alba isn't very common in adults (especially not in adult women) and also involves scaly patches which of course vitiligo does not.

Pityriasis versicolor, despite similiarity of the name ,has nothing to do with Pityriasis alba, it is in fact another name for tinea versicolor, a fungal infection. It is common and unlike pityriasis versicolor can look rather like vitiligo. There is often, but not always, itching, which there is not with vitiligo, however absence of itching doesn't rule it out.

So I think in your wife's case the diagnosis probably boils down to tinea vs. vitiligo. Tinea is treated with anttifungal creams and it does typically take a long time to resolve. Vitigilo is treated with entirely different topical drugs, as you know. BTW it can happen that vitiligo spots disappear so that doesn't rule the diagnosis out.

Your best bet is to see yet another dermatologist(s) and initiate the consultation by clearly stating that this problem has been diagnosed by different doctors as either vitiligo or pityriasis versicolor, has persisted for months and not responded well to treatments given and that you want a definitive diagnosis.

The best specialists in vitiligo in thailand are to be found at Ramathibhodi Hopspital's Dermatology Dept. It is a government hospital so be prepared for long waits & red tape especially on the first visit and have a Thai speaker with you if possible. It may take a day just to get registered and make an appointment. The doc you want are any of the following:

Natta Rajatanavin

Somsak Tanratanakorn

Wisuttida Taechochotirote

Some government hospitals have a quasi-private after hours clinic arrangement that charge more but is much less hassle. I have no idea if Ramathibhodi does. if you can, find out if there is a "clinic nok wela" option and if so try to meet one ofthe aforementioned docs that way, they'll be able to take more time with you.

One important thing to remember when dealing with Thai doctors is the cultural aspect. Maintaining social harmony and saving face for the individuals involved is the paramount concern in any interpersonal interaction in Thailand and is given far more importance than the purpose of the encounter. Achieving this requires deference to status differentials. In other words, from a Thai point of view the deference shown by the patient and the way in which the patient speaks to the doctor is more important than what is said or even the outcome of the treatment. This does not mean you cannot be assetive, but you must take care to do it in a way that preserves harmony and avoids offense. Be sure to "wai", use polite forms of address, smile apologetically when making your request etc etc. Be firm but in a very polite and deferential way that clearly acknowledges the doctor's social status. Soft tone of voice is also important.

[pratikdbl]

Thanks Richard for sharing your experience.

And thanks Sheryl for you advice. It meant a lot to us.

Finally, with reference from by boss we went to PhyaThai 2 Hospital yesterday in the morning (before we saw Sheryl's post). The doctor was Dr. Monnet. She was very good. She listened to our history and everything. She diagnosed my wife carefully and finally she also said it is vitiligo. She assured us that we don't need further test. She understood well what our emotions will be when we hear about this disease and she acted well. She explained everything, what we have to do now, how to take care and risk of taking different medicines available for this disease.

This was not the case with Dr. Parichart. She may be more experienced, but she should know how patient will feel when this disease is diagnosed. Even a better doctor is useless if he/she treats patients in bad manner.

Right now, we are very sad and worried. Dr. Parichart has given us Protopic (Tacrolimus) which has side effects. Some says, some people has developed cancer using this medicine but not yet proved. Other say, it is safe. She hasn't started using it yet. We are still thinking what to do. Right now, I am finding a good sunscreen for her.

Pratik

[Sheryl]

This is a very good site, it is a patient self-help group for people with vitiligo:

http://nvfi.org/index.php

And this site from the Mayo Clinic gives a good overview of treatment options, as you can see there are several different possible approaches:

http://www.mayoclinic.com/health/vitiligo/DS00586/DSECTION=treatments-and-drugs

Your wife should have a thyroid panel (blood test for TSH, T3, T4) and serum cobalamin (Vit B12) done as both hyperthyroidism and B12 deficiencies sometimes play a role in this disease.

[Sheryl]

P.S. regarding the tacrolimus and cancer risk, the most recent study on this found the risk to be less than one-tenth of one percent, i.e. in the range of 1 out of 2,3000 persons on the drug developed a skin cancer (cutaneous lymphoma), this was from a large scale study of more than 10,000 patients, including many children who are more at risk than adults.

Taking into account that at least some of the cases might have happened anyway and excluding the children (who had the highest incidence of cancer) , the risk for an adult is probably somewhere in the range of one in 3-4 thousand. Not zero, but very small.

The other possible treatments also have their own risks.

The current recommendation is not to use for more than one year.

[Sheryl]

P.P.S. You don't mention your wife's ethnicity. if she is from a part of the world where leprosy is still endemic (not the case in Thailand) then just make sure that the unpigmented areas have normal sensation (you can test with a pin prick having her close her eyes).

[pratikdbl]

Thanks a lot Sheryl for useful information.

We are from Nepal. But I don't think Leprosy is the problem. She feels sensation in effected area same like normal area of her skin.

But about hyperthyroidism, we are thinking of testing her blood this week. Her mother also has thyroid problem, so genetically this may be transferred to her too.

Starting tonight, after reading many articles and recommendation, we will start using protopic. Right now, her vitiligo is in small area. So, earlier the better. But now I am not finding a reliable site which says it is OK to apply sunscreen in the place where protopic is applied. One site says, sunscreen can be applied after 1 hr of protopic application. As the area of vitiligo is without melanin, we are afraid to keep this area unprotected by sunscreen. We will be meeting dermatologist every month or two to check if protopic has done any adverse effect.

Thanks.

Pratik

[Sheryl]

Sounds reasonable. And yes, if sensation is normal then leprosy is not a concern. I just mentioned it as Thai doctors would not have had experience with it and I guessed from your name you were from the subcontinent.

I share your concern re mixing the medication with sunscreen. I think the truth is no one knows about the interaction of these. How often does she have to apply it? If only once a day then I would just apply it in the evening after bathing. But if more than twice a day avoiding mixing it with sunscreen will be hard. Is it possible to just keep the affected area covered when out in the sun?

[pratikdbl]

Good idea...

Yes, it is possible to cover areas when out of sun. Because the patches are near her ears and in the chest.

I found from the web that some exposure is need to sun also. So, I am thinking of exposing to sun early in the morning (when there is not a strong sunlight) for 5-10 minutes without using sunscreen (or protopic). Do you have any idea about this? I remember that last doctor from Phyathai had told her to expose to sunlight early in the morning.

By the way, she has to use protopic twice a day.

[Sheryl]

Yes, sounds good.

As I think you know the problem is due to destruction of melanocytes, the cells that produce pigment i(melanin) n response to sunlight.

So on the one hand, lacking melanin means that part of the skin can easily burn. But on the other hand, as the medication takes effect and she starts to produce new melanocytes, sun exposure is needed to stimulate them to make pigment.

I think the first week or so of using the cream getting sun is not as important as it becomes later.

It takes time to treat this so patience is important. When the area first starts to repigment it will still be lighter in color than the rest of the skin. It will take some time to get a completely normal appearance.

Treating hyperthyropidism if she has it may also help the healing process. And do test B12 levels, or else take a small supplement. (B12 should be taken i nan empty stomach), this too may help.

[pratikdbl]

Thanks a lot Sheryl from bottom of my heart.

You really helped us and now we are ready to help fight this disease. If anything comes up, I will ask for your help again if it is okay for you.

Regards,

Pratik

[Sheryl]

Sure, no problem.

[pratikdbl]

Dear Sheryl,

My wife has started using Protopic. Lets see how it effects her vitiligo.

Last week, she did her thyroid check too. And yes you are right and thank you so much for suggesting us to check it. She has abnormal thyroid. This week we have appointment with thyroid doctor. We will check serum cobalamin too.

Thanks.

[Sheryl]

Thanks for the feedback. It is possible that correction of her thyroid problems will help in resolving the vitiligo over time.

[Tolley]

Unfortunately you wont get much help from doctors if you have vitiligo.

My exwife was diagnosed with it and for six months went to various doctors and then specialists who just prescribed more potent cream and potions.

Finally she went to my naturopath who put her on an anti yeast diet i think it was plus vitamins and something to boost immune function. End result was it started to clear up in a couple of weeks and was all gone a month or two later.

Bottom line is western trained doctors are clueless when it comes to skin conditions.

Topical creams do not treat the symptoms which cause these problems.

Chinese herbalist would probably be helpful as well for this type of condition.

[pratikdbl]

Yes Sheryl. Hope so....

And Tolley, can you please explain what kind of vitamins she was prescribed. Any more you can explain us about your wife's medication, foods (what to eat and what not to), how to increase immune and so on. Please tell us anything you remember. It will be a great help for us.

Thanks.

[pratikdbl]

By the way, can you also tell me from where your naturopath doctor is from? Is he from Thailand??

[Tolley]

Sorry this was 20 years ago so I cant remember the details.

And in any case every individual is different.

It was in Australia and we used a naturopath that i knew was very good.

If you are in thailand i suggest the best thing would be to seek out a Chinese herbalist.

Maybe somebody on the forum knows a good one somewhere.

[pratikdbl]

Ohh..ok

Anyways, thanks Tolley

[Sheryl]

There have been advances in conventional treatment since 20 years ago!

The drug she is receiving was not available then.

Personally I would stick with proven remedies.

[pratikdbl]

Yes Sheryl.

She is right now using protopic. She is diagnosed with hyperthyroid. Doctor has told her to make more blood test and probably next week she will start medicine for thyroid too. Now we will check serum cobalamin also.

Additionally, she is doing yoga in the morning and has become vegan for now and stopped eating sugar. If she is diagnosed with vit b12 deficiency, she will again start eating meat particularly liver meat.

Edited June 22, 2012 by pratikdbl

[Sheryl]

Even if she does not have B12 deficiency yet, she will develop it on a vegan diet. Even lacto-ovo vegetarians (or which I am one) are prone to it.

it is advisable for vegetarians take B12 supplementation -- especially if they are complete vegans.

[pratikdbl]

Hmm..you right Sheryl. Thanks for pointing it out.

She will start eating meat again soon. Or may be B12 supplements if she still want to continue becoming vegan.

[Tolley]

There have been advances in conventional treatment since 20 years ago!

The drug she is receiving was not available then.

Personally I would stick with proven remedies.

Personally I would look for the source of the problem and try to fix it without the use of drugs.

It takes longer and it requires more discipline than just popping a pill or applying a cream but the long term benefits are worth it.

[pratikdbl]

Hi Tolley,

Sorry for late reply.

You are right. We should find the source of this problem. So, we are doing various tests for thyroid, serum cobalamin and candida too. Thyroid has come positive. Today she has appointment for vitamins/minerals test. For candida we are testing in web with candida questionnaires and symptoms. Home test for candida is not so reliable although we did spit test and it came positive. She has stopped eating sugar and as for meat she will be stopping red meat but not chicken.

In parallel, she will be also using cream for few months as she has already started using it. We will see the effect of the cream and if it does not work at all, she will stop after consulting with the doctor.

[dingdang]

where are you doing the vitamins/minerals tests, what is tested, and how much is it?

[dingdang]

Hypomelanosis guttala - you can google pictures, maybe it looks like this?

its not large white patches, but rather small spots...

[pratikdbl]

Hi All,

Today we got the report for thyroid and to our surprise, she has slight hypothyroid. As far as I know, vitiligo patients has hyperthyroid.

Also today we were not able to do vitamins/mineral test in our hospital. So, now we have to go to another hospital. So, dingdang, I cannot answer your question. As for Hypomelanosis guttate, I don't think that's her problem. The patches are quite large. Anyways, thanks for giving your thought.

We still think it is vitiligo and we are following the instructions/opinions from Sheryl and Tolley.