What your doctors can and can’t do when it comes to Alopecia Areata
1 year ago / in Blog
In the first 3 years of our Alopecia journey, we have consulted with six doctors in Australia and Canada. In this post, I’m going to share our experience with each doctor consultation, what you can expect from your doctors, and what they can and can’t do when it comes to Alopecia Areata, or any autoimmune disorder.
The different doctors we’ve consulted about Alopecia Areata
In a span of three years, we have seen and consulted with different doctors, including specialists, about Little Claire’s Alopecia Areata.
- General Practitioner (GP) in Melbourne, Australia – November 2015
- Specialist Paediatric Dermatologist in Melbourne, Australia – July 2016 (with a follow up scheduled for November 2016 that we cancelled due to relocating to Canada)
- Family Physician in Vancouver, Canada – December 2016
- Chinese Medicine Doctor in Vancouver, Canada – January 2018
- Paediatrician in Vancouver, Canada – March 2018
- Dermatologist in Vancouver, Canada – April 2018
In addition, we have also been on the waitlist to see a Specialist Paediatric Dermatologist in Vancouver since March 2018 and are still waiting 12 months later.
I have also spoken on the phone with a Chinese Medicine Doctor who specialises in hair loss and hair growth treatment, and based on his response as well as lack of confidence in being able to provide any solution for a child, we decided not to go ahead with the consultation.
Our experience with doctor consultation on Alopecia, what they can and can’t do
Here’s how our experience went with each doctor consultation, lessons we’ve learned about what they can and can’t do.
1. Initial consult with General Practitioner (GP) in November 2015
Our initial consult was with a GP or Family Doctor in Melbourne, Australia, right after we saw that Little Claire was developing an unusual hair loss pattern.
The GP ordered a suite of blood tests and wrote a referral for a Paediatric Dermatologist at Royal Children’s Hospital Melbourne, a top children’s hospital in Australia.
Blood test results showed that Little Claire had an excellent nutrition profile, apart from a slightly low ferritin level, but not low enough to be cause hair loss of that magnitude. Her thyroids were also in good shape.
In short, there was nothing found to directly suggest the cause of her alopecia. The doctor wasn’t able to provide any further direction as we waited in line for an appointment with a Paediatric Dermatologist.
There was no advice provided by the doctor, not even on basics of diet and nutrition. However, during the wait time, I started adding a lot more iron and zinc rich foods, a lot more variety of fruit and vegetables of varying colours, along with food sources of biotin.
Lessons learned from initial alopecia doctor consultation with a GP or Family Doctor
- Your doctor will most likely order blood tests as a first course of action, as this will enable them to identify any apparent cause of the hair loss. They will ask questions about general health, and whether there have been any events leading up to the hair loss, for example infection, medication, pulling of the hair, and so on, which may help them with the diagnosis. They can usually tell very easily if the alopecia is caused by fungal infection or something more.
- Nutrient deficiency is usually NOT the cause of alopecia, especially basic nutrients like iron, zinc, protein and biotin in today’s modern day diet.
- Upping your game on daily diet is just the first step to help ensure that you equip your body with all the basic essential nutrients to fight this, but good daily diet alone is NOT enough to cure a complex autoimmune-triggered alopecia.
- Supplementation will NOT help unless you are deficient in certain nutrients that are directly causing hair loss, which is unlikely in most cases of alopecia. Most supplements in the market are also synthetic (man made from chemicals to mimic the nutrients found in wholesome food sources). Be careful of supplements containing fillers and artificial ingredients that may do more harm than good.
2. Specialist consult with Paediatric Dermatologist in July 2016
After an 8-month wait, we were seen by a specialist paediatric dermatologist at a top children’s hospital in Australia. By this time, Little Claire had gone through a couple of growth-loss cycles, with patches and new growth forming in different areas around the head. The hair was still generally of very thin and fragile quality.
The specialist doctor did a simple test by gently pulling some hair out and concluding the diagnosis to be an autoimmune Alopecia Areata. Exclamation mark hairs were observed, which indicated that the autoimmunity and inflammation were still active.
We were told by the doctor that we could expect the hair loss to continue, and he could not tell us if things were going to get better or worse and in how much time.
The specialist doctor was unable to offer any advice or solution. However, he did reluctantly write a prescription for Minoxidil as a symptomatic treatment, making it very clear that this medicated treatment would only address the symptoms and be helpful if the hair was already going to regrow anyway.
We also agreed with the doctor that for a child of 2 years of age, there was no social pressure on appearance that would warrant the side effects of this drug.
The hospital did a 360-degree photography for documentation, and no further tests were ordered, largely due to her age and the lack of suitable and safe treatment options.
Lessons learned from specialist consultation with Paediatric Dermatologist
- Paediatric Dermatologist is a highly specialised field and there aren’t many specialists even in major cities. With perceived non-emergent nature of hair loss, you may have to wait a long time to see one. Within that time, you may have gone through several growth-loss cycles, or the hair loss may have progressed to totalis or universalis (complete hair loss) in some people. Make sure you keep your nutrition in check while waiting, to help keep things under control.
- Alopecia areata caused by autoimmunity is very distinct and most doctors can easily tell just by looking and performing a simple hair pull test.
- Exclamation mark hairs are thinner toward the root (scalp) and thicker toward the end. These hairs indicate that inflammation is still active and hair loss may continue to occur.
- There is no cure for autoimmunity in the medical world today. Even if your doctor prescribes drugs and treatments, check to be sure that they are only treating the symptoms, and be aware of their side effects so that you can make an informed decision.
- Your doctor may also refer you for a suite of tests, some of which are as invasive as scalp biopsy, but the outcome of these tests will still only lead to symptomatic medical treatment, if you’re dealing with autoimmunity. They do not address the root cause or a cure of the underlying problem.
3. Opinion from a Family Physician in December 2016
When we saw a Family Physician shortly after relocating to Canada about a nose bleed earlier in the day, I brought up Little Claire’s hair loss, which happened to be at its worst state at the time at the time.
The doctor took a quick look and made a brief confirmation acknowledging it to be Alopecia Areata. It was brief but was a greatly underwhelming experience, although hardly surprising.
Lesson learned from another Family Doctor’s opinion
- Family Doctors or General Practitioners are able to easily identify Aopecia Areata, but they will not be able to offer any further advice that you may find meaningful or helpful.
- A Family Doctor may only be able to write a referral for you to see a specialist, but even then, don’t get your hopes up with the specialist (see #2 above).
4. Alopecia doctor consultation with a Chinese Medicine Doctor in January 2018
Little Claire had gone from the worst state of her alopecia in late 2016 to nearly full regrowth by the end of 2017. But after a few weeks of almost a full head of hair, we started seeing a small patch forming around the centre top of the head.
We decided to see a Chinese Medicine Doctor in hopes of getting a possibly new perspective on things. This doctor does not charge for consultation, and is a family acquaintance, so I felt quite comfortable.
Through pulse diagnosis, the doctor suggested that something seemed very active in her digestive system. He asked if Little Claire displayed any behavioural problems, which she did not. He also asked questions about her daily diet, but was quick to conclude that nutrition was a big part and that we could do with higher protein.
He wasn’t able to identify anything ‘seriously wrong’ with her health, and was only able to suggest that we included more protein in her diet, especially during breakfast, through dairy products like organic milk.
I was convinced that something was missing from this session. For one, Little Claire already had a pretty complete diet and was no way lacking in any of the basic nutrients like protein, vitamins and minerals. True, absorption may be a factor, but something still felt inadequate.
Nevertheless, we started adding organic grass-fed milk, eggs, and bone broth more regularly to her daily diet. I also switched out rice with organic quinoa and sweet potatoes, and always made sure to give her at least 5-8 different varieties of plant foods daily, in addition to choosing the oils we use for cooking very carefully. Her snacks were nutrient-dense foods like avocados, fresh fruit, and a variety of organic nuts and seeds.
Lesson learned from alopecia doctor consultation with Chinese Medicine Doctor
- If you decide to get a different perspective by seeing a Chinese Medicine Doctor, look for a licensed practitioner in your area, and beware of one that charges a high fee for consultation and tries to push product sales.
- Be as thorough and precise as you can with answering their questions to prevent inaccurate assessment or diagnosis.
- Chinese Medicine is often seen as an alternative when Western Medicine can’t offer a solution, however Chinese medicine is still medicine that may have side effects, although in general the side effects may not be as strong as those of Western medication.
5. Alopecia doctor assessment and opinion from Paediatrician in March 2018
When we saw a Paediatrician at a major hospital in Vancouver, Canada for a viral infection during spring break of 2018, I also brought up Little Claire’s hair loss.
The paediatrician did a history taking and the usual assessment to finally conclude and concur with the diagnosis of our paediatric dermatologist back in Australia. However, the Canadian doctor would NOT have even prescribed Minoxidil for a child of this age (she was 4 at the time).
She also indicated that we had done really well to still have most of her hair on after 3 years of Alopecia Areata. I later found out that it was common for many people, especially kids, to have lost all of their hair in a fairly short amount of time.
Lessons learned about alopecia doctor assessment from a Paediatrician
- Autoimmunity has no cure in the medical world today, and when it come to alopecia on a young child, possible symptomatic relief from medicines are not worth the short and long term side effects.
- Canadian and Australian doctors tend to be quite conservative when it comes to prescribing drugs to young children for treating alopecia, due to the side effects of these drugs and that they don’t actually cure the condition.
- None of the doctors we’ve seen have offered any advice in terms of how we can manage her immune system in the absence of medical cure. None of the doctors brought up anything in relation to nutrition and diet.
6. Alopecia doctor consultation with a Dermatologist in April 2018
We were able to see a Dermatologist fairly quickly, but it was a consultation session that left us feeling deflated and frankly, quite odd. The Dermatologist started with a series of questions for the standard protocol of history taking that would hopefully lead to a diagnosis and subsequently, advice.
We provided her with as detailed answers as we could to all her standard questions, to which her response was that she had no idea how to proceed with this, considering Little Claire was a mere 4-year-old child, and that she had to refer this to someone who is specialised in paediatric dermatology.
The dermatologist left the room without any further comment, and it was quite an awkward moment for us as we didn’t even know what was going to happen next.
Lessons learned from Dermatologist consultation about paediatric alopecia
- Most doctors, including dermatologists, are not equipped to help with autoimmune alopecia especially on young children. The medication prescription guidelines are very different for young kids because they have to weigh in on risks and side effects, so the doctors are left with next to nothing.
- A dermatologist’s standard solution for alopecia includes medication such as steroids and immunosuppressants, which are unsafe for children. This leaves dermatologists with nothing else they could do when faced with child alopecia.
I will never advocate for skipping the doctors when it comes to medical conditions. See your doctor first thing, get tests done to at least know what the issue (or issues) is. When it comes to autoimmune related condition, and more specifically Alopecia Areata which we’re discussing here, the medical world as of today is only able to offer symptomatic medicated treatments.
It means that treatments offered will be in the form of some sort of medicine, and only relieve the symptoms of the underlying condition, at best. Our doctors have advised us that the efficacy of these treatments also depends on how our body reacts to them, so results cannot be guaranteed. As with all medicines, there are inherent side effects with each of these drugs and you want to make sure that you are aware of them before making an informed decision.
Supplementation does not help with alopecia UNLESS your hair loss is directly caused by specific nutrient deficiency, but nutrient deficiency leading to hair loss is very rare in today’s modern diet. Be careful of supplements made of synthetic materials and containing artificial ingredients such as fillers and preservatives. Having a varied and rich diet of wholesome foods is a much better way to go than supplementation with vitamin pills.
Specialists that are trained in the area of hair loss aren’t many, even in major cities and tertiary hospitals. You may wait a long time to see a specialist for your alopecia consultation, and in the meantime you may go through regrowth and/or even more hair loss. There are things you can do to help keep things in check in the time it takes for you to see a specialist, by way of nutrition and topical oils treatment.
Prepare for your doctors appointment, and be as thorough and precise as you can to help steer the conversation more productively. But don’t get your hopes up that they can do miracles for you, because no doctor can offer a cure for this condition yet up to this day.
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