Hair Loss and Hidradenitis Suppurativa:
Hair Loss in Hidradenitis Suppurativa
I’ve selected this question below for this week’s question of the week. It allows us to discuss the important topic of hidradenitis suppurativa and what associations is has with hair loss.
QUESTION
I am a 23 year old female and was diagnosed with androgenetic alopecia at age 16 and treated with Rogaine and Spironolactone. I also have polycystic ovarian syndrome and prediabetes and have seen an endocrinologist for several years. Everything seemed to be going okay until recently. Lately, the pattern of hair loss is changing and my scalp is becoming intensely itchy and sometimes quite red and scaly. I am shedding a lot more and seen to have hair loss in many areas of the scalp whereas it used to be mainly on the top. Strangely, I am getting very itchy in several other areas recently including the underarms, thighs, private area and breasts. These areas are lumpy and tender and occasionally drain some small amounts of fluid. It’s getting pretty bad and is so so embarrassing for me. It makes be extremely sad. I am generally healthy although I am overweight and have depression and high blood pressure. I take metformin for prediabetes. I take citalopram for depression. Both fo these drugs sstarted about 1 year before these issues began. I am not on medications for blood pressure yet as my doctor increased by spironolactone from 100 mg to 200 mg to see if this will help.
My questions for you are :
1) Can polycystic ovarian syndrome causes cysts outside of the ovary like on the areas stated here?
2) Is PCOS also associated with scalp itching ?
Any insights into this could be helpful as it is severely affecting all and every part of my life!!!!!
ANSWER
Thanks for the question. I can understand how difficult many of these issues are so I’m glad you’ve submitted this question.
I’d like to discuss several important points in the question you ask and the information you have submitted.
Before we do go further, I’d like to point out that the ideal way to diagnose hair loss is using what I termed the ”Diagnostic S.E.T.” I refer to these as the diagnostic “set” because theses 3 aspects all go together. These 3 items include:
1) the patient’s story
2) the findings uncovered during the process of the scalp examination including trichoscopy
3) the results of relevant blood tests.
The first letter of each of the three words 1) story, 2) examination and 3) tests spell out the word “S.E.T.” - again a helpful reminder of how the information obtained from reviewing each of these 3 aspects helps solidify a proper diagnosis.
There are several important issues in your scenario. The first key question here in your case is what exactly is the reason for your scalp symptoms and hair loss. The only way I can really confidently determine that is with an up close examination. The second important issue is whether you had a systemic issue (full body issue) to explain the lumps. The most important to consider with your doctors is a conndition called hidradenitis suppurativa.
Let’s go further into your story.
Your Scalp Issues
I can’t say exactly what you have without examining your scalp myself (or at very least seeing photos). It does seem that there is a new issue going on on the scalp that is very different from androgenetic alopecia that you were diagnosed with in the past. I would encourage you to see a dermatologist as soon as you can for an up close examination. Common issues like seborrheic dermatitis and psoriasis and contact dermatitis need to be considered. These can cause itching and scaling. However, other issues also need to be thoroughly evaluated - including various types of scarring alopecia.
Many of these conditions can be diagnosed with a proper examination and trichoscopy. If there is any remaining doubt, a scalp biopsy can be considered. Blood tests are always needed for anyone with shedding including thyroid studies, iron studies (ferritin), CBC. Issues like thyroid diseases or low iron can give increased hair shedding but would not give the intense itching you described. That would be caused would be something else.
Your Lumps
I would also urge you to bring up the issue of the lumps you have in the armpits, thighs, private area and breasts to your dermatologist. There could be a few reasons for this but a condition called hidradenitis suppurativa needs some careful consideration by your doctors. There are other issues that cause lumps too although with your story the diagnosis of hidradenitis suppurativa needs prompt consideration before moving on to other diagnoses.
Hidradenitis suppurativa (HS)
Hidradenitis suppurativa (HS) was once considered rare. We know now that it’s not rare and in fact up to 1-4 % of the population an be affected when mild cases are taken into consideration. HS is a dermatological condition that is associated with painful draining lumps in the underarm area (axillae), groin area and buttocks and under the breast. The lay public often refers to such lumps as “boils” - and patients affected by hidradenitis often describe their disease as one of multiple draining boils in the armpits, groin and buttocks regions. The condition can be emotionally and physically disabling.
Hidradenitis suppurativa is thought to be a disease of hair follicles. It has been proposed that there is some initially plugging of follicles that then leads to the eventual rupture of these follicles. Better and better treatment options have arisen in the last decade.
Hair Loss Conditions Associated with Hidradenitis Suppurativa
Not all patients with HS have hair loss. But when they do have hair loss, a variety of reasons need to be considered. Some of the reasons are unrelated to the HS and some are related to th HS. Patients with HS seem to have an increased risk for psoriasis, alopecia areata, Telogen effluvium, dissecting cellulitis and lichen planopilaris. Of course, patients with HS can have hair loss conditions that anyone can get.
See Prior Article “Risk of Alopecia Areata and Lichen Planopilaris Increased in Hidradenitis Suppurativa”
I am not completely sure if you have HS - as that would require a proper examination. However, as I reflect on your question, it’s important to consider issues like psoriasis, lichen planopilaris and dissecting cellulitis as being causes of your hair loss. . These can cause redness, and itching. Alopecia areata does not cause this kind of itching but if you had alopecia aerate with seborrheic dermatitis or alopecia areata with psoriasis it certainly could. Fortunately, a proper examination by your dermatologist can usually distinguish between these issues. If not, a biopsy is going to be key.
Systemic Issues Associated with Hidradenitis Suppurativa
There are several systemic (internal) diseases that occur more frequently among patients with a diagnosis of hidradenitis suppurativa. PCOS is one of them. Psoriasis is another one. Prediabetes (and diabetes) is another and depression is another. I think it’s really important that you review your health issues again with your dermatologists and endocrinologist.
When I teach doctors about Hidradenitis Suppurativa in the clinic, I really want them to remember all the conditions that patients with HS can develop. I not only want them to remember them - but I want them to ask the patient about them. There are many issues to discuss. The memory tool “PIMPLES” helps medical practitioners remember many of the key issues to ask about. The list does not include all the associatioss - but does include the key ones.
Many Hidradenitis Associations Have Been Well Studied
A number of good studies have been done to date which allow us to understand the strength of the various associations that can occur in patients with HS. These are outlined in the table below. PCOS is increased two fold and metabolic syndrome and depression are increased about 2-3 fold in patients with HS. If you do end up being diagnosed with HS, you will want to review these associations with your doctors.
Summary
Thank you again for your excellent question. Hidradenitis suppurativa affects so many people and my hope is that this answer will provide information and open up dialogue between you and your physicians. The cysts you are experiencing are different than the cysts in the ovary. A proper evaluation can confirm if these lumps are the cyst-like eruptions seen in hidradenitis. The HS issues could be separate form the hair loss or could be related. A biopsy is going to be helpful if there is any doubt as to what’s causing your scalp issues.
Good luck & thank you.
Reference
Andersen et al. Psoriasis as a comorbidity of hidradenitis suppurativa. Int J Dermatol . 2020 Feb;59(2):216-220.
Dessinioti C, Katsambas A, Antoniou C. Hidradenitis suppurrativa (acne inversa) as a systemic disease. Clin Dermatol. 2014;32(3):397-408.
Fauconier M et al. Association between hidradenitis suppurativa and spondyloarthritis. Joint Bone Spine. 2018 Oct;85(5):593-597.
Gonzalez- Vellanueva et al. Hidradenitis Suppurativa is Associated with Non-alcoholic Fatty Liver Disease: A Cross-sectional Study. Acta Derm Venereol. 2020 Aug 18;100(15):adv00239.
Horissian M et al. Increased risk of alopecia areata for people with hidradenitis suppurativa in a cross-sectional study. J Am Acad Dermatol 2019
Patel KR et al. Association between hidradenitis suppurativa, depression, anxiety, and suicidality: A systematic review and meta-analysis. J Am Acad Dermatol. 2020 Sep;83(3):737-744.
Pescitelli et al. Hidradenitis suppurativa and associated diseases.G Ital Dermatol Venereol.. 2018 Jun;153(3 Suppl 2):8-17.
Phan et al. Hidradenitis Suppurativa and Thyroid Disease: Systematic Review and Meta-Analysis. J Cutan Med Surg . Jan/Feb 2020;24(1):23-27.
Phan et al. Hidradenitis suppurativa and polycystic ovarian syndrome: Systematic review and meta-analysis. Australas J Dermatol. 2020 Feb;61(1):e28-e33.
Phan et al. Prevalence of inflammatory bowel disease (IBD) in hidradenitis suppurativa (HS): systematic review and adjusted meta-analysis.Int J Dermatol. 2020 Feb;59(2):221-228.
Rodriguez-Zunga et al. Association Between Hidradenitis Suppurativa and Metabolic Syndrome: A Systematic Review and Meta-analysis. Actas Dermosifiliogr . 2019 May;110(4):279-288.
Tannenbaum et al. Association Between Hidradenitis Suppurativa and Lymphoma. JAMA Dermatol . 2019 May 1;155(5):624-625.
Thanh-Lan Bui et al. Hidradenitis suppurativa and diabetes mellitus: A systematic review and meta-analysisJ Am Acad Dermatol. 2018 Feb;78(2):395-402.
Vazquez BG, Alikhan A, Weaver AL, Wetter DA, Davis MD. Incidence of hidradenitis suppurativa and associated factors: a population-based study of Olmsted County, Minnesota. J Invest Dermatol. 2013;133(1):97-103.