How is post-Accutane syndrome diagnosed?
Post-Accutane syndrome (PAS) has no test. Doctors diagnose it from your history, rule out other causes and can use criteria published in 2022.
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There’s no blood test or scan for post-Accutane syndrome, or PAS. A doctor diagnoses it from your history: problems that began with isotretinoin (Accutane, Roaccutane in the UK) and lasted after stopping, once other causes have been ruled out.
PAS is more than sexual problems. The doctors who wrote the 2022 criteria say the name often means lasting sexual problems, but just as often seems to include problems with thinking and suicidal thoughts without them. The UK leaflet also says dry eyes have not always resolved after stopping.
If your course was in the UK since October 2023, your notes may already answer one question the criteria ask: how were you before?
Miriam took two low-dose courses of isotretinoin in Spain. Within months of the second ending, she could no longer wear contact lenses. Two eye doctors tried steroid drops, then allergy drops, before a dry eye specialist named the problem in April 2024: most of the oil glands in her eyelids had been lost.
In this extract she describes the treatments that didn’t work, and the day the problem got a name.
Nobody told her the cause. “He didn’t tell me what was the cause for the disease,” she says. She found the link to isotretinoin herself. The doctors behind the 2022 criteria call conditions like PAS “little known and poorly understood by healthcare professionals”.
How do doctors diagnose post-Accutane syndrome?
From your history, checked against the 2022 criteria. An international group of doctors and researchers led by David Healy wrote them from published case reports. They’re for lasting sexual problems, which they call post-retinoid sexual dysfunction (PRSD). Other effects, such as problems with thinking, aren’t in the list.
“(1) Prior treatment with isotretinoin. (2) Enduring sexual dysfunction after stopping treatment.”
“(3) Enduring reduction or loss of sexual desire. (4) Enduring erectile dysfunction (males) or loss of vaginal lubrication (females). (5) Enduring reduction in genital and orgasmic sensation. (6) The problem is present for ≥3 months after stopping treatment.”
“(7) No evidence of pre-drug sexual dysfunction that matches the current profile. (8) No current medical conditions that could account for the symptoms. (9) No current medication or substance misuse that could account for the symptoms. (10) No other prior medication that could account for the symptoms.”
Just before the list, the authors write: “There should be no prior use of finasteride or an SRI when making a PRSD diagnosis.” An SRI is an SSRI-type antidepressant. Finasteride and SSRIs are linked to similar lasting problems, called PFS and PSSD. Our article on how PSSD is diagnosed covers the antidepressant side.
Dr Kenneth Peters, a urologist in Michigan, saw two people with PAS in a short space of time. Both had been well before, he says, and the numbness came on soon after they stopped. That clear before and after is the pattern the criteria look for. Watch the extract to hear why the timing convinced him.
What tests will a doctor do for PAS?
No test can show PAS. Tests rule out the other causes that criteria 8 and 9 ask about.
Nothing in the criteria needs a test result to be abnormal, so a normal result doesn’t rule PAS out. Criteria 7 to 9 are word for word the same as for PSSD. Our page on what blood tests can and can’t show explains how tests fit those rules. Its line on borderline hormone levels holds for PRSD too, the authors say.
Why do my notes from before Accutane matter?
Because the criteria ask whether you had the same problem before the medicine.
Since 31 October 2023, the UK medicines regulator has told prescribers to ask patients about any sexual function concerns before prescribing isotretinoin. They should also assess mental health first, then check both at every follow-up. The expert group whose report led to those rules wrote that it “would seem sensible” to identify anyone with sexual problems before treatment.
So ask the clinic that prescribed it, or your GP surgery, for the notes from your first appointment. If your course was earlier, or outside the UK, there may be no such record. Then your own account is what you have. Our page I think I have post-Accutane syndrome shows how to write it down.
What can I do?
These medicines help many people. If you have side effects, that’s a decision for you and your prescriber.
Print the criteria, which are free to read, and take them to your GP with your notes from before. Ask for each symptom and your isotretinoin course to go on your record, even if nobody can name it yet.
Three questions for your GP
- Which other causes have we ruled out, and which are left?
- Can my isotretinoin course and each symptom go on my record?
- What's our next step if the symptoms continue?
You could start with: “These problems began with isotretinoin and haven't gone since I stopped. Can we go through what has been checked?”
Many people say it took time to be taken seriously. Bring the leaflet line about problems that continue after stopping. You can report it without a doctor agreeing.
Report it: it helps everyone
A doctor’s note helps you. A report to the medicines regulator helps everyone else: it is how patterns get noticed.
- No proof needed. A suspicion is enough, even years after stopping.
- Where: the Yellow Card scheme in the UK, MedWatch in the US.
- Use the right words. PAS has no medical term yet, so name each symptom and say that it continued after stopping.
Our reporting guide walks you through it
What else do people ask?
Can I be diagnosed if I took it years ago? Time alone doesn’t rule it out. The authors say no time limit can be set after which a diagnosis can’t be made, and they cite reports of problems lasting over two decades. Nobody knows yet who will be affected, or whether it will ease.
Do mood and memory problems count? They’re not among the criteria. The paper lists cognitive problems and depression as isotretinoin effects that can come with the sexual problems or on their own. A current mental health diagnosis “does not prevent” a diagnosis, the authors add. If you’re struggling, the Samaritans are on 116 123 in the UK and Ireland.
Our articles on brain fog and depression after stopping cover what’s known.
Is post-Accutane syndrome an official diagnosis? Not yet. It has no official definition and no diagnosis code of its own, and its cause isn’t known. Our article Is post-Accutane syndrome real? goes through the evidence.
Miriam had to find the link to isotretinoin herself. Your notes from before isotretinoin are the first thing to find. Take them to your GP with our page on post-Accutane syndrome.
Sources
- Healy D, Bahrick A, Bak M, et al. Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin. International Journal of Risk & Safety in Medicine, 2022; 33(1): 65–76. Section 6 gives the criteria for post-retinoid sexual dysfunction (PRSD), quoted in full on this page under the headings “Necessary”, “Additional” and “There should be”. Criteria 7 to 9 match those for PSSD word for word. “There should be no prior use of finasteride or an SRI when making a PRSD diagnosis.” Cognitive impairment, depression and suicidality are listed among isotretinoin effects that “can occur independently of any sexual difficulties but may also accompany sexual problems”. The name PAS “often refers to what is termed PRSD here but equally often appears to include suicidality and other cognitive effects without sexual difficulties”. In the general section, a current mental health diagnosis “does not prevent” a diagnosis. Borderline hormone levels in PSSD, PFS and PRSD “may be a consequence of the conditions rather than a cause”. “It is not possible to set a time limit after which an enduring condition cannot be diagnosed”, and no upper limit on duration: PRSD has been reported to last over two decades. Introduction: “little known and poorly understood by healthcare professionals”. An expert consensus drafted from two published case series built on reports to RxISK.org; three authors declare links to RxISK.org. Open access.
- Roaccutane 10 mg and 20 mg soft capsules, patient leaflet, Electronic Medicines Compendium (EMC 100633), last revised April 2026. Section 2 reports long-lasting sexual problems that “continued despite stopping treatment”. Section 2 also: “Cases of dry eyes not resolving after discontinuation of therapy have been reported.” Section 4: side effects “generally reversible after changing the dose or stopping treatment, however some may continue after treatment has stopped”.
- Roaccutane, summary of product characteristics, EMC 100633, text revised 27 April 2026. Section 4.4: “All patients should be asked about the presence of symptoms or signs of sexual dysfunction prior to starting treatment with isotretinoin”.
- MHRA, Drug Safety Update: isotretinoin, introduction of new safety measures, 31 October 2023. Prescribers should “assess patients’ mental health before prescribing isotretinoin”, “ask patients about any sexual function concerns before prescribing isotretinoin” and monitor mental health and sexual function “at each follow up appointment”.
- Commission on Human Medicines, Report of the Isotretinoin Expert Working Group, 26 April 2023, published by the MHRA. Section 5.5: it “would seem sensible” to identify anyone with sexual problems before treatment.
- MHRA, Yellow Card scheme.
- Moral Medicine, From Mild Acne to Severe Dry Eyes, Hair Loss and Infertility: Miriam’s Nightmare After Isotretinoin, interview with Miriam, 13 October 2025 (the title is the channel’s). Our page plays an extract, 16:04 to 17:25: two eye doctors and their treatments, psychological support, then the diagnosis of evaporative dry eye disease and meibomian gland dysfunction in April 2024. At about 17:47 she says: “he didn’t tell me what was the cause for the disease” (auto-captions). Her story on our site: Miriam’s story.
- SIDEfxHUB, Interview with Dr. Kenneth Peters, PFS / PAS / PSSD Summit 2026, April 2026. Our page plays an extract, 3:42 to 4:50; the views are his own. Paraphrased from the auto-captions. Our article: the summit.
- MHRA, Isotretinoin Impact Review information session, 22 January 2026. Our page plays an extract, 5:15 to 6:02, in which Dr Shareen Doak lists the measures introduced in October 2023, including “assessment of mental health and sexual function before starting treatment”.
This information does not replace medical advice. Talk to your doctor before you make any decision about your treatment.
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