Intracranial hypertension? already heard that in PFS studies

After years I took a control MRI of the brain as I have problems of hyperprolactinemia. It was confirmed I have a small herniation of the Chiasmatic cistern in the Sella Turcica.

It is very possible that this leads to compression of part of the pituitary, thus leading to reduced dopamine signaling and increased prolactin secretion.

A major cause of herniation is Intracranial hypertension, which is, interestingly mentioned in the Melcangi’s Allopregnalone study (if I remember correctly).

Were any of these guys tested for cerebrospinal fluid pressure?
Did any one among you took a contrast MRI of the pituitary?
Any thoughts about this?

I will talk with my endocrinologist about this soon and will update.

Thats a severe side effect of Accutane as well.
Someone awhile ago felt like he had intense head pressure post accutane and convinced his nero to do a lumbar puncture. They didnt find anything.
He also went on prednisone and he felt it made his head pressure worse.

There was another member on acne.org that went by the name of Babis, who had alot of extensive tests run.
They found some low-grade brain inflammation per a pet head scan analyzed by Mayo Clinic.
I think I recall him mentioning something about the pituitary gland. I’d have to check, some posts have been erased by the website because the archive was becoming so massive.
@Dubya_B might remember this.
Where have you been btw?

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It would be important to know if the accutane guy had the CSF pressure tested too. However I have my reserves on the similarities between accutane syndrome, PSSD, PFS. They might have common symptoms but I hardly can think that they originate the same microbiological problems.

I am researching about babis on acne.org

It’s my tenth year in Fin/PFS. I decided to follow an holistic approach a lot of time ago and stopped following the forum because of work and mental sanity. Unfortunately I’m still trying to resolve this. I’m not in economical conditions to have an holistic approach done to the best. Neither a medical one. I also tried a 3 day water fasting. Once I restarted eating my friend down there restored to normal dimensions for a few days. I think that’s the only moment in the last 8 years where it really seemed in health like before fin. I am considering doing that again. I come back here on occasions.

723 pages, 18k replies on repairing the long term damage from Accutane.
So many posts have been deleted, im seeing what I can find.
This was the member the had the lumbar puncture, I cant even click on his posts, they’re gone.

Repairing the long-term damage from Accutane

Jorcruz24 replied to IndigoRush’s topic in Prescription acne medications

So after about a year going from countless doctor to doctor, all the blood tests at least twice, MRIs, CT scans, lumbar puncture, I’ve been diagnosed with the following: -Fibromyalgia -Major Depressive Disorder -Irritable Bowel Syndrome -Sebhorric Dermatitis Im currently taking Zoloft and Wellbutrin, both antidepressants, and Cyclobenzaprine (muscle relaxant). As as far as self-care, I eat a relatively healthy diet, CBD/THC oil…

I just got my results from my Lumbar Puncture procedure and luckily (or perhaps unluckily) they did not find anything wrong with the cerebrospinal fluids. It’s at least some peace of mind, but back at zero—especially considering the fact the procedure caused leakage days later and I needed to go back to the ER to get a blood patch to seal it up (not fun!). I have a follow-up appointment with my neurologist on Monday, but over the phone he did mention tre possibility of…

From Babis,
After a visit to Mayo clinic, a few pituitary hormone tests, and pituitary stimulation tests, I finally confirmed the source of the problem.

It is hypopituitarism. My MRI showed a relatively small pituitary to begin with, but I never had problems because it was producing enough hormones.

However, when I took Accutane, it caused most pituitary hormones to drop to low or low-normal levels. After Accutane, I had low TSH, low FSH, and low IGF-1. I also had the testosterone of a 90 year old male, with inappropriately normal LH. If testosterone is low, LH should not be normal; the pituitary should elevate LH to signal the testis to produce more testosterone. If it doesn’t, then the pituitary (or hypothalamus) is not working properly. This is called hypogonadotrophic hypogonadism.

The articles I have posted above confirm that Accutane lowers pituitary hormones. In addition, my hypogonadal symptoms occured acutely while on Accutane and partialy diminished once stopping, so there is little doubt left that accutane causes hypopituitarism to susceptible individuals. What is not mentioned in the literature is that the damage may be permanent or long-term. If it causes apoptosis in sebaceous and meibomian gland cells, what would stop it from causing apoptosis in other glands as well, such as the pituitary gland?

When Crisler said in an interview that US endocrinologists know zilch about hormones, I was skeptical but, sadly, I found out the hard way how right he was. Yes, on lab reports, most of my hormone levels looked “normal”, i.e. within lab range, so most endocrinologists thought my hormones were fine. Some of them suggested viagra or a penile implant (!) although I am only 33 years old. 8 out of 10 endocrinologists are not open to the fact that “normal” levels should be age-adjusted. You cannot consider the testosterone level of a 90 year old male normal for a 30 year old male. They were also happy that my LH was normal, and unable to recognize that it was inappropriately normal. It was only Alan Jacobs (neuroendocrinologist in NY city) that recognized this as a sign of hypogonadotrophic hypogonadism. But the growth hormone deficiency (due to hypopituitarism) was missed for another year, until I asked my endo for an IGF-1 test and, once that was abnormally low, a GH stimulation test. The test showed a zero GH response of the pituitary to stimulation!

I had to read hundreds of medical journal articles and see >50 doctors of all specialties before ending up in the right experts, doing the right tests, and zero in on the right treatments.

Anyway, since I confirmed the source of the problem I focused on treating the underlying cause. One can replace the missing hormones, but it is much better to restore their natural production by the body. I read guidelines on testosterone replacement therapy (such as those of John Crisler) but had to tweak them to suit my needs. I am doing well on low dose HCG + low dose testosterone gel. The usides and downsides of this protocol are detailed in Crisler’s articles and interviews. Exogenous testosterone supressed natural production of testosterone by the testis, and LH & FSH by the pituitary. The upside of HCG is that it stimulates the testis to procuce testosterone naturaly, preventing testicular atrophy. However, it is still supressive to the pituitary. For this reason, I only take low doses that allow me to feel well but do not supress my pituitary too much. Moreover, to wake up my pituitary from time to time, I take a very low dose Clomid regimen for a week of every month or so. This stimulates the pituitary to produce LH and FSH. I feel much better in this regime, testis size has been restored (it was decreased for 1.5 years post-accutane) and muscle size is also beginning to be restored. Most importantly, I do not feel weak and exhausted like I did, and my heart pumps much better. I also found that Citicoline (an acetylchonine precursor) increases all pituitary hormones, which is perfect for me, and seems to have helped restore psychogenic erections (which were also lost for 1.5 years post-accutane). It increased my IGF-1 from 120 to 160, and I hope to increase it further to age-appropriate levels.

As I mentioned in other posts, I also developed autoimmune autonomic ganglionopathy after accutane. This is a potentially life-threatening autoimmune neuropathy mediated by neuronal acetylcholine receptor autoantibodies. The decreased number of alpha-3 acetylcholine receptors on my autonomic ganglia may be an extra reason why Citicoline helps me.
By the way, after 4 years of workup and every endocrinology test available, my official diagnosis is hypogonadotropic hypogonadism and subfertility secondary to partial hypothalamic insufficiency, due to isotretinoin treatment . I hope this helps other people with problems: find a good reproductive endocrinologist (don’t go to a generic endocrinologist, they are clueless) and get your hypothalamic function tested.

Well, I haven’t visited the website for ages and you probably do not need my reply anymore, but here are the articles again:

Evidence for decreased androgens, neurosteroids and their receptors:

Evidence for decreased androgen 5 alpha-reduction in skin and liver of men with severe acne after 13-cis-retinoic acid treatment.

J Clin Endocrinol Metab. 1994 May;78(5):1064-9.

Effect of oral isotretinoin treatment on skin androgen receptor levels in male acneic patients.

J Clin Endocrinol Metab. 1995 Apr;80(4):1158-61.

Excerpt: " The present study clearly demonstrated a decrease in androgen receptor binding capacity… The isotretinoin-receptor complex may interact with cis-acting response elements in the promoter region of regulated genes, repressing the gene transcription encoding for the androgen receptor, the gene transcription encoding for the 5-alpha-reductase activity, or both transcriptions simultaneously ."

Epigenetic side-effects of common pharmaceuticals: A potential new field in medicine and pharmacology.

Med Hypotheses. 2009 Nov;73(5):770-80.

Excerpt: " The following adverse effects have been reported to persist, even after discontinuing therapy, suggesting persistent (or perhaps slowly-reversing) gene expression changes and epigenetic effects: alopecia, arthralgias, ocular abnormalities, inflammatory bowel disease, keloids, osteopenia, hyperlipidemia, erectile dysfunction, and psychiatric disturbances. Isotretinoin is postulated to have complex effects on the brain and central nervous system. "

13-cis-retinoic acid competitively inhibits 3 alpha-hydroxysteroid oxidation by retinol dehydrogenase RoDH-4: a mechanism for its anti-androgenic effects in sebaceous glands?

Biochem Biophys Res Commun. 2003 Mar 28;303(1):273-8.

Isotretinoin, tetracycline and circulating hormones in acne.

Acta Derm Venereol. 1997 Sep;77(5):394-6.

Effects of isotretinoin on male reproductive system.

Lancet. 1994 Jul 16;344(8916):198.

Erectile dysfunction during isotretinoin therapy.

Actas Urol Esp. 2005 Nov-Dec;29(10):974-6.

Acitretin-associated erectile dysfunction: a case report.

Cases J. 2009; 2: 210.

In animals treated with retinoids, testicular atrophy with spermatogenetic arrest was described:

Toxicology, carcinogenicity, and teratogenicity of some orally administered retinoids.

J Am Acad Dermatol. 1982 Apr;6(4 Pt 2 Suppl):652-9.

Retinoid receptors involved in the effects of retinoic acid on rat testis development.

Biol Reprod. 2001 May;64(5):1307-14.

In humans treated with retinoids, pituitary hormones (including LH and FSH), testosterone and IGF-1 where suppressed:

Isotretinoin influences pituitary hormone levels in acne patients.

Acta Derm Venereol. 2011 Jan;91(1):31-4.

Effects of chronic retinoid administration on pituitary function.

J Endocrinol Invest. 2005 Dec;28(11):961-4.

Short-term isotretinoin treatment decreases insulin-like growth factor-1 and insulin-like growth factor binding protein-3 levels: does isotretinoin affect growth hormone physiology?

Br J Dermatol. 2010 Apr;162(4):798-802

13-Cis-retinoic acid decreases hypothalamic cell number in vitro.

Neurosci Res. 2010 Nov;68(3):185-90

By the way, after an LHRH stimulation test and a number of other tests, my endocrinologist finally narrowed down the problem and diagnosed me with partial hypothalamic insufficiency (leading to low testosterone, low growth hormone, and low cortisol). So I have hypothalamic hypogonadism. The fact that accutane damages the hypothalamus is confirmed by the last four papers in the above list. (Of course, 99% of endocrinologists have never heard of this literature because they never prescribe accutane - dermatologists do - and dermatologists do not read endocrine journals).

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I also tested positive for this antibody he mentions.
Alot of info there from him.

“I had to read hundreds of medical journal articles and see >50 doctors of all specialties before ending up in the right experts, doing the right tests, and zero in on the right treatments.”

He was also getting ivig treatment at Mayo.

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That’s pretty powerful that 2 people tested positive for an auto antibody. As you know I believe this is an autoimmune condition. I wonder how we can go about getting tested / do you know others who have been tested?

Autoimmune Dysautonomia Evaluation, Serum

https://www.mayocliniclabs.com/test-catalog/Overview/92121

Well if I was running some of these studies on PFS (like Baylor), I would screen every single patient for this test.
I think it could have a broad reach across many disease states that affect the peripheral nervous system. This is the type of test where if you were to get a few positive results, I think it would start to validate PFS, as to something very real is going on.

Other Autonomic Neuropathies Associated with Ganglionic Antibody

The acetylcholine receptor ganglionic (G-AchR) antibody is a very specific serologic test for autoimmune autonomic ganglionopathy. The spectrum of autoimmune (or presumed to be autoimmune) autonomic disorders, however, is quite broad and positivity to this antibody has been reported in a variety of other conditions.

Mayo Clinic offers autoantibody evaluations that are tailored to detect all currently recognized IgG markers of autoimmune dysautonomia and gastrointestinal (GI) dysmotility. The ganglionic (alpha 3) acetylcholine receptor (AChR) autoantibody is the most commonly detected marker of autoimmune dysautonomia and is sometimes encountered with isolated GI dysmotility. This is the only autoantibody proven to cause dysautonomia, including GI dysmotility. Importantly, cancer is detected in up to 30% of patients with the alpha-3 AChR autoantibody.

Because no more than 50% of patients with idiopathic dysautonomia are seropositive for the ganglionic AChR antibody, even when the dysautonomia is severe and generalized, Mayo Clinic has developed and clinically validated comprehensive serological profiles for dysautnomia and GI dysmotility that include neural autoantibodies in addition to ganglionic AChR autoantibodies.

This is why you would need to test everyone though,
**no more than 50% of patients with idiopathic dysautonomia are seropositive for the ganglionic AChR antibody, even when the dysautonomia is severe and generalized,

I’ve been to the autonomic center at Mayo Clinic, diagnosed with POTS. I think this is interesting if we could make a push to get tested. It would provide cold hard evidence. So only u and another dude have gotten tested that u know of.

One other with PAS was tested for the ganglionic (alpha 3) acetylcholine receptor (AChR) autoantibody, it wasnt the Mayo test though, it was through Quest Diagnostics.
He was negative, but again there could be false negatives.
I would also want it to be through the same lab, I believe Mayo invented this test.
Most Drs are not going to be aware of this test which might include the Drs running the PFS studies.
It will probably take some convincing for a person to have their Dr authorize this test.
For example, I havent been able to do anything with my result, because its beyond all of my local Drs.
I even went to nearby renowned university to see one of their neurologists, and he wasnt even familiar with the test or antibody.

Interesting. I mean even 2/3 is pretty huge. If ur fucking with ach channels I mean ur entire body would be fucked just like ours. I’m gonna ask my doc in a couple weeks

Damn I’m actually excited…I figured we would have to wait years for someone to stumble upon an auto antibody. As of now in my opinion almost everyone tests high for IGE antibodies, ghost said most people analyzed have a vitamin D receptor mutation for resistance which is definitely implicated in autoimmunity, and just my story and hundreds / thousands of others like a train coming out of nowhere. Mayo actually diagnosed me with minor dysautonomia with POTS and Central Sensitization. They said they’re seeing more and more people with central sensitization that’s not related at all to pain but just a general dysautonomia in the body and they’re in the process of creating a new disease category (we ll see if that comes true). But just incredibly interesting man

So a person takes said drug and then develops this antibody, I always keep in mind ways to go after the drug manufacturer.
More positive results would be exciting. I believe Babis was treated with IVIG at Mayo because of this test result. This might not be feasible for most though. Ive already been looking at alternative treatment and how this might happen to begin with or what provokes this.

Here’s one example of a neurological disorder related to this antibody

Ganglionic acetylcholine receptor autoantibodies in patients with Guillain-Barré syndrome

Patients with GBS may have circulating antibodies against gAChR, which may contribute to the autonomic dysfunction associated with this disease.

Heres another,

Insights from the ganglionic acetylcholine receptor autoantibodies in patients with Sjögren’s syndrome

Neuroimmunogastroenterology: At the Interface of Neuroimmunology and Gastroenterology

The Role of the Gut Microbiota and Gut Permeability in Neuroinflammatory Disease

I appreciate your reply. Yeah Im 100 percent convinced it’s autoimmunity and have been trying natural treatments for the past 1.5 years including Coimbra protocol various herbs and shit like that. Have had some improvements but not my life back. This is exciting to me and should be for others, I’m gonna try to get a script for this test in a couple weeks. Anyway I can get it sent to mayo for testing instead of quest / labcorp?

Also yes I think the place u get it tested is so important. If anyone has ever been to mayo here you will see it’s above and beyond any other top hospitals in the world in my opinion that I’ve been to

I also think the question now is how do we solve it🥴

You dont have to be at Mayo to get this test, most hospitals around the world can send their blood tests to Mayo Clinic.
I would just make sure your insurance will cover this, check the cpt codes and use the test id from mayos catalog when ordering this test.

Hmm ok thanks, I’ll contact you before I go to the doc to make sure I have everything in order

This is the exact test you would be requesting.
https://www.mayocliniclabs.com/test-catalog/Overview/92121
Again here is my result,

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Wow thank you. I’ll definitely take this with. This is amazing. Damn maybe my Easter gift. Idc if it’s autoimmune, there’s ways to manage it and quite honestly the more I dive into different autoimmune things, people recover all of the time. Thanks brother

And can cause sexual dysfunction

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