20 minutes ago, fiksi said:As you know, I didn't lose much hair, though this may yet happen- with tane you don't know. But, I have a host of other side effects, which are pretty bad.
Doctors downplay these, and you don't know if they will fully recede, and when.
What are your vasopresin levels? Tane messes up the pituitary gland... this urination/thirst might come from this?
No clue they never checked that....
can anxiety cause all these symptoms I have
crusty dry mucus eyes nose
sleep issues
cold hands feet
flushing
dry rashy skin
exfessive urination?
I didn't know the actor lost his case.
Did anyone know that Matthew McConaughey took accutane and his father took out a legal case but later dropped it?
20 minutes ago, hatetane said:http://www.nj.com/business/index.ssf/2014/08/nj_appeals_court_reverses_21_million_accutane_verdict_against_roche.htmlI didn't know the actor lost his case.
Did anyone know that Matthew McConaughey took accutane and his father took out a legal case but later dropped it?
Wow I didnt know that.
42 minutes ago, Nemesisbrady said:No clue they never checked that....
can anxiety cause all these symptoms I havecrusty dry mucus eyes nose
sleep issues
cold hands feet
flushing
dry rashy skin
exfessive urination?
I very much doubt it, probably accutane... it is known accutane messes up pituitary gland, and vasopresin regulates water levels.
Has anyone tested all pituitary hormones?
BTW, I experienced this thirst/pissing issue as well, but not so much.
53 minutes ago, Gladiatoro said:My main issue is Im always thirsty , some days I feel diabetic. But according to my Allopathic doctor all tests are fine.
might make sense to test pituitary.
Very few people experience only one tane effect, often this is a host of issues.
Has anyone had problems swallowing?
So confused would anybody know whats what
so I keep thinking of the last rheum appointment
he said my igg4 is elevated but not high enough to suggest something
google says high means something
my Ana was speckled at 1:40 end point 1:160
he said thats normal for some people
scl-70
dna antibody
jo-1 antibody
ssa
ssb
rnp ab normal
centromere
smith antibody
cardiolipin igg
ccp
c3
c4c
beta 2 glycoproteins
tpo
thyroglobulin
all of those red normal
yet Schumers test shows no tears
im dry inside and out and rashes on face
im So confused
if if I have every symptom and igg4 high ama speckled
but all this is normal
does that mean Im ok?
he wants to do lip biopsy if thats normal he said no sjorgens
my skin gets so rashy and worse in sun
Random iodine was double the amount high
but I took iodine supplements
history if thyroiditiis is that just went away some how
yet I have symptoms still
5 minutes ago, fiksi said:I very much doubt it, probably accutane... it is known accutane messes up pituitary gland, and vasopresin regulates water levels.Has anyone tested all pituitary hormones?
BTW, I experienced this thirst/pissing issue as well, but not so much.
might make sense to test pituitary.Very few people experience only one tane effect, often this is a host of issues.
Has anyone had problems swallowing?
Thanks
i have no clue whats going on
i legit have cut out so much for my symptoms and still have no relief
im lose to trying heroin to see if it makes me diff idk
i really hate to even say that
12 minutes ago, Nemesisbrady said:So confused would anybody know whats what
so I keep thinking of the last rheum appointment
he said my igg4 is elevated but not high enough to suggest something
google says high means somethingmy Ana was speckled at 1:40 end point 1:160
he said thats normal for some peoplescl-70
dna antibody
jo-1 antibody
ssa
ssb
rnp ab normal
centromere
smith antibody
cardiolipin igg
ccp
c3
c4c
beta 2 glycoproteins
tpo
thyroglobulinall of those red normal
yet Schumers test shows no tears
im dry inside and out and rashes on faceim So confused
if if I have every symptom and igg4 high ama speckled
but all this is normal
does that mean Im ok?he wants to do lip biopsy if thats normal he said no sjorgens
my skin gets so rashy and worse in sun
Random iodine was double the amount high
but I took iodine supplementshistory if thyroiditiis is that just went away some how
yet I have symptoms still
Thanks
i have no clue whats going on
i legit have cut out so much for my symptoms and still have no reliefim lose to trying heroin to see if it makes me diff idk
i really hate to even say that
@Nameisbrady.
Are you the irish guy with with the cool back Tatoo lol
PRAC is reviewing the psychiatric symptoms of accutane so this is the best time to appeal to them.
You only have to give then relevant history and tell them how accutane has impacted your lives for so long.
The group email is in my posts or I can re-post.
Or PM me - I can tell you more or we can email.
What about you Gladiator? - you are the most active guy on here - will you take the time to write to them.
It only needs to be a quick email.
PRAC are the ones who ordered the up-date of sexual sides.
Remember how Togg presented his experience - it was so honest and heart wrenching.
If anyone wants to contribute pleas PM me
Many thanks
10 minutes ago, hatetane said:@Nameisbrady.Are you the irish guy with with the cool back Tatoo lol
PRAC is reviewing the psychiatric symptoms of accutane so this is the best time to appeal to them.
You only have to give then relevant history and tell them how accutane has impacted your lives for so long.
The group email is in my posts or I can re-post.Or PM me - I can tell you more or we can email.
What about you Gladiator? - you are the most active guy on here - will you take the time to write to them.
It only needs to be a quick email.PRAC are the ones who ordered the up-date of sexual sides.
Remember how Togg presented his experience - it was so honest and heart wrenching.
If anyone wants to contribute pleas PM me
Many thanks
have you got a link for togg presenting his experience?
On 1/19/2018 at 3:33 AM, Nemesisbrady said:No clue they never checked that....
can anxiety cause all these symptoms I havecrusty dry mucus eyes nose
sleep issues
cold hands feet
flushing
dry rashy skin
exfessive urination?
Mention this to your rheum. A couple people that took accutane have tested positive for this antibody, this was the test.
@octopusfrog got back to me, and wasnt able to get this test yet.
AChR Ganglionic Neuronal Ab, S
Autoimmune Dysautonomia Evaluation, Serum
[Edited link out]
Dysautonomia or autonomic dysfunction is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia has many causes, not all of which may be classified as neuropathic.[4] A number of diseases can feature dysautonomia, such as Parkinson's disease, HIV/AIDS, multiple system atrophy, autonomic failure, postural orthostatic tachycardia syndrome, and autonomic neuropathy.
On 1/19/2018 at 5:05 AM, guitarman01 said:Mention this to your rheum. A couple people that took accutane have tested positive for this antibody, this was the test.
@octopusfrog got back to me, and wasnt able to get this test yet.
AChR Ganglionic Neuronal Ab, SAutoimmune Dysautonomia Evaluation, Serum
[Edited link out]
Dysautonomia or autonomic dysfunction is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia has many causes, not all of which may be classified as neuropathic.[4] A number of diseases can feature dysautonomia, such as Parkinson's disease, HIV/AIDS, multiple system atrophy, autonomic failure, postural orthostatic tachycardia syndrome, and autonomic neuropathy.
Correct me, but isn't something similar tested in Myasthenia Gravis, also an autoimmune?
On 1/19/2018 at 5:05 AM, guitarman01 said:Mention this to your rheum. A couple people that took accutane have tested positive for this antibody, this was the test.
@octopusfrog got back to me, and wasnt able to get this test yet.
AChR Ganglionic Neuronal Ab, SAutoimmune Dysautonomia Evaluation, Serum
[Edited link out]
Dysautonomia or autonomic dysfunction is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia has many causes, not all of which may be classified as neuropathic.[4] A number of diseases can feature dysautonomia, such as Parkinson's disease, HIV/AIDS, multiple system atrophy, autonomic failure, postural orthostatic tachycardia syndrome, and autonomic neuropathy.
Whats the follow up if you do test positive??
What happens after that?
21 minutes ago, fiksi said:If I understand correctly... it's a bad sign. This is present in some very severe problems, or, it can predate them.
I get that.
There must be a follow up plan though?
Doctor is not just to say youve tested positive, this is bad see you later....
Equally I cant imagine they just recommend supplements, Im thinking there are prescription drugs involved, but what are they?
11 minutes ago, Gladiatoro said:Remember chronic cellular dehydration painfully and premature KILLS.
Yeah the chronic dehydration is incessant.
The only thing that gives me hope in this dept came from a highly regarded Kinesiologist I saw - he pointed out when I raised this that cells in human body regenerate every 7-8 years.
Whilst that might be a fact, 20 years after Tane I still remain very dry, face constantly feels dry, hair is dry etc etc.
I also have skin like a porcelain doll, a girl at work even said I have beautiful skin - I didnt have the energy to tell her how this came to be....
1 hour ago, TrueJustice said:Yeah the chronic dehydration is incessant.The only thing that gives me hope in this dept came from a highly regarded Kinesiologist I saw - he pointed out when I raised this that cells in human body regenerate every 7-8 years.
Whilst that might be a fact, 20 years after Tane I still remain very dry, face constantly feels dry, hair is dry etc etc.
I also have skin like a porcelain doll, a girl at work even said I have beautiful skin - I didnt have the energy to tell her how this came to be....
If ever cell regenerates every 7 to 8 years how the hell are we chronically dehydrated then ?
I dont buy it.
Well, remember its not just cells dried out yeah its also the sebaceous glands.
Then we have the lack of collagen so the point is theres a whole host of issues going on with dryness and lack of structure in skin.
Lets hope the cells do regenerate as normal, Im not a dermatologist so I really dont know, they probably dont know either though ha ha.
9 hours ago, TrueJustice said:I get that.There must be a follow up plan though?
Doctor is not just to say youve tested positive, this is bad see you later....
Equally I cant imagine they just recommend supplements, Im thinking there are prescription drugs involved, but what are they?
The presence of the body itself is not a disease in itself, it's only a "bad omen".
So if you have it, doctors should search for related problems, and treat them. If you don't have them, they can't remove the ACHR body itself.
Everyone I know that took isotretinoin has had chronic systemic dehydration after exposure especially the eyes ,mouth , lips , skin as a permanent side effect of chemotherapy treatment.
Other side effects tend to ease their way into your life down the road , joint pain especially lower back , mental dips etc.
5 minutes ago, Gladiatoro said:Everyone I know that took isotretinoin has had chronic systemic dehydration after exposure especially the eyes ,mouth , lips , skin as a permanent side effect of chemotherapy treatment.
Other side effects tend to ease their way into your life down the road , joint pain especially lower back , mental dips etc.
For example, the eyes... they are lubed by a gland which accutane agressively tries to kill off. This has been proven in many studies, and is in many cases irreversible.
You're essentially gambling that you won't get one of 200+ side effects tane has, many which can stick with you.
Please read this post before what I am going to say next... I don't want to repeat a ton of information.
More about my case, concerning libido loss:
I got my last blood test results... any thoughts if further tests are needed?
Spermogram: the urologist said there's nothing wrong. Note: all Google Drive links are from the lab. They are written in portuguese.
[Edited link out]
STD tests taken 2 months after the last time I had sex (I waited all this time to make sure they would be accurate). Herpes igG is positive, but I never had any symptoms - it's only there like it is in 2 thirds of the population.
[Edited link out]
First blood tests from August:
[Edited link out]
Second blood tests from November, 2017 (remember: I took Accutane for months during 2011):
[Edited link out]
And now the last tests:
[Edited link out]
From January 15, 2018.
Let's see:
All OK:
Uric Acid, Creatinine, Glucose, Complete Blood Count (why it showed Eosinophilia now? Will check that later), Lipid profile, Free T4, Urea, Aspartate transaminase, Alanine Aminotransferase and Thyroid-Stimulating Hormone (TSH). All of them in the reference ranges from the lab.
************ RELEVANT RESULTS *********
1) Total testosterone:
I said 3.09 in the 1st test, and 4.19 in the 2nd after 3 months taking vitamin D. I am still taking, this time 7000 UI/week and not 14000, for another 3 months (but I have plans to stop taking the supplement, and spend more time outside in the morning).
Now: 357 ng/dL. Lab ranges: 175 - 781 ng/dL
2) Free testosterone: 7.21. Lab ranges: Since 2011 it's calculated according to total test. and SHBG levels. According to Vermeulen, A. ET AL., 1999, the ref. ranges are 4.58 - 18.33 ng/dL for men, and 0.03 - 0.95 ng/dL for women.
3) SHBG (1st time I did this test): 32.6 nmol/L. Lab ranges: men from 20 to 50 years old: 13.2 - 89.5 nmol/L.
4) Vitamin D: still at 40's. Now 42.4 ng/mL.
5) Vitamin B-12 (1st time): lag ranges for men: 81 - 488 pg/mL. My result: 449 pg/mL.
6) FSH (1st time): 6.54 mUI/mL. Lag ranges for adult men: 1.27 - 19.26 MUI/ML
7) LH (1st time): 4.61 mUI/mL. Lag ranges for men: 1.24 - 8.62 MUI/ML
8) Gamma-Glutamyl Transferase (GGT) - 1st time: 18 U/L. Ranges: 7 - 45 U/L
9) Prolactin: 28.51 ng/mL. Ranges for men: 2.60 - 13.10 ng/mL. Previous results: 25-25. Once again high prolactin.
10) Zinc (1st time): still waiting for results
Note:
Months ago I also did these two, and they came back OK:
- Abdominal Ultrasound and MRI scan - sella turcica
About additional tests, I am asking if these are necessary to investigate what sort of damage Accutane did, since we are talking about sexual dysfunction:
- Dihydrotestosterone (DHT)
- E2, which measures the amount of estradiol, a form of estrogen
- DHEA-S (dehydroepiandrosterone sulfate)
- Progesterone
- IGF-1 (Insulin-like Growth Factor-1)
Like I said, I am going to get to the bottom of this. I was even thinking of testing for other vitamins besides D-3 and B-12...
However I don't know if doing all or any of these is necessary.
*
And now I see the Wikipedia article has been updated on this matter:
* WIKIPEDIA: ACCUTANE *
Isotretinoin is also associated with sexual side effects, namely erectile dysfunction and reduced libido.
https://www.medicines.org.uk/emc/medicine/15655
In October 2017, the UK MHRA issued a Drug Safety Update to physicians in response to reports of these problems.
>>>>>> "Drug Safety Update - Latest advice for medicines users - October 2017" (PDF). MHRA. 3 October 2017.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/655127/DSU-Oct-pdf.pdf
This was in response to an EU review, published in August 2017, which states that a plausible physiological explanation of these side effects "may be a reduction in plasma testosterone".
The review also stated that "the product information should be updated to include sexual dysfunction including erectile dysfunction and decreased libido as an undesirable effect with an unknown frequency".
http://www.ema.europa.eu/docs/en_GB/document_library/Minutes/2017/09/WC500235426.pdf
There have also been reports of spermatogenesis disorders, such as oligospermia. 27 cases of sexual dysfunction report either negative dechallenge or positive dechallenge.
* WIKIPEDIA: ACCUTANE *
This link:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1472884/
Says the following:
>>>>>> Diagnosis of Hypogonadism: Clinical Assessments and Laboratory Tests
In males, serum testosterone levels show a circadian variation, with the highest levels in the morning and lowest levels in the late afternoon. In young men, the variation in testosterone levels is approximately 35%. Although the normal range for serum testosterone might vary between different laboratories, the normal range for early morning total testosterone in healthy adult males is approximately 300 ng/dL to 1000 ng/dL.
If that's the case then my blood tests indicate I have normal levels. But that doesn't mean IDEAL LEVELS, which I assume are in the middle (500, 600), and never 300, 400.
Let's continue:
Prepubertal: Secondary hypogonadism is associated with low levels of testosterone and normal to low levels of LH and FSH.
The signs and symptoms of low testosterone in postpubertal adult males can be more difficult to diagnose and might include loss of libido, erectile dysfunction, diminished intellectual capacity, depression, lethargy, osteoporosis, loss of muscle mass and strength, and some regression of secondary sexual characteristics.
At the initial visit, the first objective is to distinguish between primary gonadal failure, in which low testosterone is accompanied by increased FSH and increased LH, and hypothalamic-pituitary disorders (secondary hypogonadism), with low testosterone and low to normal FSH and LH levels. *
Do I fit in the latter case? Low testosterone levels and LOW TO NORMAL LH and FSH levels?
* Initial laboratory testing should include early morning (8:0010:00 AM) measurement of serum testosterone, prolactin, FSH, and LH levels. For the diagnosis of primary hypogonadism, FSH measurement is particularly important because FSH has a longer half life, is more sensitive, and demonstrates less variability than LH.
The aging male patient can present with signs and symptoms of low testosterone, including loss of libido, erectile dysfunction, diminished intellectual capacity, depression, lethargy, osteoporosis, and loss of muscle mass and strength. At the initial visit, laboratory testing should include early morning (8:0010:00 AM) measurement of serum testosterone. In elderly men, testosterone levels decrease between 15% and 20% over the course of 24 hours. *
OK, I did all those tests early in the morning. I had to wake 2 hours earlier (I usually wake at 8:00 AM), but that was not an issue. As for all low testosterone symptoms I don't think I have any of these, including fatigue. Except for loss of libido. And depression was a symptom I had for a few years after the Accutane treatment. Now it's totally gone.
Total testosterone levels might be normal with hypogonadism if the SHBG levels are increased. Levels of SHBG increase with age, causing a decrease in bioavailable testosterone. If testosterone levels are low-normal but the clinical symptoms and signs indicate hypogonadism, measurement of serum total testosterone levels should be repeated and an SHBG level should be determined. With the total testosterone and SHBG levels, a bioavailable testosterone value can be calculated. A bioavailable testosterone calculator is available at www.issam.ch/freetesto.htm.
It is usually not necessary to determine FSH or LH levels in the aging male. ***
And the article continues, explaining more about total/free test. and SHBG.
* In selected patients, FSH, LH, and prolactin can be measured. If the FSH and LH levels are raised, this suggests a primary testicular cause, and if levels are low or normal, a hypothalamic or pituitary cause should be considered. A raised prolactin level suggests that further investigation of the pituitary gland should be undertaken. *
The FSH and LH levels are not high. So that rules out the first suggestion.
"A hypothalamic or pituitary cause should be considered" (if the levels are low or normal - THEY ARE NORMAL). What kind of tests should I do to investigate this?
"A raised prolactin level suggests that further investigation of the pituitary gland should be undertaken." (3 different blood tests show exactly THAT. Not that high (25), yet still high for a man).
Hypothalamic or pituitary deficiency might be transitory or permanent. Transient secondary hypogonadism might be related to malnutrition or stress states and can be diagnosed by physical examination and evaluation of the patients growth chart. If permanent hypothalamic or pituitary hormone deficiency is suspected, serum levels of pituitary hormones and magnetic resonance imaging of the brain and pituitary should be obtained to screen for hypothalamic or pituitary disease. **
Malnutrition or stress states?
Does that mean if I change my diet (which is not bad, still I have an appointment with a nutritionist this month, to do a complete overhaul - plus another specialist, to do the same for my workout routine, I go to the gym every day in the morning) I can fix this?
And stress might be related to sleeping 1, 2 hours less? If this is the case, then I can't neglect to inform that I was doing this in the past weeks, prior to this blood test.
"can be diagnosed by physical examination and evaluation of the patients growth chart" (Growth chart?)
"If permanent hypothalamic or pituitary hormone deficiency is suspected, serum levels of pituitary hormones" (Again, what kind of exam? To check these serum levels of pituitary hormones?)
"and magnetic resonance imaging of the brain and pituitary should be obtained"
Didn't I do that already? I said I did a "magnetic resonance imaging of the sella turcica region". Does that cover this suggestion?
"...to screen for hypothalamic or pituitary disease."
*
Although the normal range for serum testosterone might vary between different laboratories, the normal range for early morning testosterone in male adults is approximately 300 ng/dL to 1000 ng/dL. An early morning total serum testosterone level of less than 300 ng/dL clearly indicates hypogonadism, and under most circumstances benefit will be derived from testosterone replacement therapy. A healthy male adult patient with a serum testosterone level greater than 400 ng/dL is unlikely to be testosterone deficient, and therefore clinical judgment should be exercised if he has symptoms suggestive of testosterone deficiency.
*
I get it, I predict my testosterone levels will fall in the range of 400 ng/DL in the coming months when I change my lifestyle and spend more time outside (for vitamin D, since this also raises test. levels). I understand that TRT has a lot of issues and should be THE LAST RESORT. Only when all other options have been eliminated, and for TRT if the levels are even lower than mine. I heard people explaining that it's an artificial increase that will trick the body and prevent a natural improvement, it will probably need to continue for the rest of one's life, and there's the expenses and
dependency of taking another S.HIT.
The thing is: my actual testosterone levels are not OK by a long shot and anyone that says they are should get punched in the face. Testosterone levels now are lower than ever before:
http://thechart.blogs.cnn.com/2011/08/18/modern-life-rough-on-men/
Countless sources will tell that. Meaning we can't say this is OK just because most men are weaklings, because today standards of how masculine (and healthy) we are not the IDEAL ones.
* Hypogonadism can be of hypothalamic-pituitary origin or of testicular origin, or a combination of both, which is increasingly common in the aging male population. It can be easily diagnosed with measurement of the early morning serum total testosterone level, which should be repeated if the value is low. Follicle-stimulating hormone, LH, and prolactin might also need to be measured. If the clinical signs and symptoms suggest hypogonadism but the serum testosterone level is near normal, then assay of serum testosterone should be repeated in conjunction with SHBG because serum testosterone might be normal in the presence of hypogonadism if the SHBG level is raised, which commonly occurs in elderly male patients. ****
Anyone gone to Mayo Clinic??????
im now going out of state for bdd help
altboigh thats gunna be more ssri
meaning more erectile issues and dryness and bs
my family doesnt understand having Rosacea like rash dry skin and swollen dark bags under my eyes
from
not sleeping is ruining my self esteem
nope to them its ur bdd get help
i wonder if Mayo Clinic could prove I have sjorgens lupus like bullshit going on
16 minutes ago, Nemesisbrady said:Anyone gone to Mayo Clinic??????
im now going out of state for bdd help
altboigh thats gunna be more ssri
meaning more erectile issues and dryness and bsmy family doesnt understand having Rosacea like rash dry skin and swollen dark bags under my eyes
from
not sleeping is ruining my self esteem
nope to them its ur bdd get helpi wonder if Mayo Clinic could prove I have sjorgens lupus like bullshit going on
Yes, they can run autoimmune bodies/ANA etc... it looks like accutane messed up your immune system man, possibly.
Its def ruined and no one believes me
shit flags and Im brushed off
snd told its not that could be this
then they tell me 15 diff things
i google it
i get hopeless and then I snap and family wants me gone
like Im so close to just blowing my brains out
I hate wondering why ifeel like shit
and getting no anwers
told this and that
i legit have been housebound off an on 10
years almost 30
like this is no life for someone
im getting paranoid over food because Im told skin is gluten dairy and all this
vitamin a bs
i urinate 20x day I dont even wanna drink water Anymore
sorry Im just mad
i have to be told Im bdd when I legit have skin eye issues and all this
and no one takes it serious
12 minutes ago, Nemesisbrady said:Its def ruined and no one believes me
shit flags and Im brushed off
snd told its not that could be this
then they tell me 15 diff things
i google it
i get hopeless and then I snap and family wants me gonelike Im so close to just blowing my brains out
I hate wondering why ifeel like shit
and getting no anwerstold this and that
i legit have been housebound off an on 10
years almost 30like this is no life for someone
im getting paranoid over food because Im told skin is gluten dairy and all this
vitamin a bs
i urinate 20x day I dont even wanna drink water Anymore
sorry Im just mad
i have to be told Im bdd when I legit have skin eye issues and all thisand no one takes it serious
Once you finish accutane, nobody cares... we have to go around on our own, finding answers.
Accutane is a cancer drug, so affects basic cell divison, apoptosis and such... and alters gene expression. This means it cna mess up any and every system and organ, possibly permanently.
Your issues sound immune related, amongst other. How much have you taken? I crashed on my 4th month.