You waited 4 years to get some tests done? just tell the doctor all the things you want checked, he/she will understand it, all vitamins, thyroid, liver ect

I agree - don't hold back from your doctor. Tell him or her all of your concerns and that you think it's from you taking oral isotretinoin. I don't know of any specific tests to ask for other than the ones you've mentioned, but if you speak up about all of your side effects, your doctor should know what tests to administer.

You waited 4 years to get some tests done? just tell the doctor all the things you want checked, he/she will understand it, all vitamins, thyroid, liver ect

I've been hoping it would pass of its own volition, as well as my having tried various things(biotin, vitamin d and others) to no avail.

Heya

You should also get tested for autoimmune dosease. Most long term side effects are very lupus-like, e.g. hair falling out, rashes, joint pain, fatigue, migraines etc In fact, i'm ten 1/2 months post treatment and have had issues all year, one after another. Recently have been officially diagnosed with Lupus. And since first symtpoms started whilst on isotretinoin, well its all very co-incidental to say the least. I'm on Plaquenil, a Lupus med. Make sure that they rule this out- just a matter of taking some blood tests.

Best, Shantelle

I am in exactly the same boat as you my friend - Metaphorically, we are sinking.

Mine's getting closer to 5 years now.

I have my bloodtests booked for wednesday.

Next I will check for autoimmune disease.

Best thing is to ask the doctor to find out what can be done to check.

I mention Accutane and they have no clue, which is frustrating.

At least they give out tests easily and they don't need to believe us. I just wish they did.

Keep us updated. I will try to.

Takes a week for results.

Heya

You should also get tested for autoimmune dosease. Most long term side effects are very lupus-like, e.g. hair falling out, rashes, joint pain, fatigue, migraines etc In fact, i'm ten 1/2 months post treatment and have had issues all year, one after another. Recently have been officially diagnosed with Lupus. And since first symtpoms started whilst on isotretinoin, well its all very co-incidental to say the least. I'm on Plaquenil, a Lupus med. Make sure that they rule this out- just a matter of taking some blood tests.

Best, Shantelle

How's Plaquenil working out?

I hear there are side effects with it?

How's Plaquenil working out?

I hear there are side effects with it?

Just want to keep the thread running.

I've just been and had some blood stolen off me.

The pirates!

I'll report back next week.

I was tested for thyroid and ferratin (iron level).

Pretty sure it's going to come back fine and I'll still be lost in confusion.

But to assume make an ass out of ... You already know that joke.

Keep happy.

Or do your best to try.

Indy

(Not an indian)

Just want to keep the thread running.

 

I've just been and had some blood stolen off me.

The pirates!

 

I'll report back next week.

I was tested for thyroid and ferratin (iron level).

Pretty sure it's going to come back fine and I'll still be lost in confusion.

But to assume make an ass out of ... You already know that joke.

 

Keep happy.

Or do your best to try.

 

Indy

(Not an indian)

I'd be interested in hearing what the results are. I haven't gotten my bloods done yet, but when I do, I'll be sure to update as well.

Loss of Hair, Dry lips, organ damage are side effects of Accutane and there is nothing that can be done to reverse it. Its not like you can remove it from your body. Damage is already done. All the blood work in the world wont help. Sorry to hear this, but this is why you see cancer patients with same symptons.

cancer can be cured. and cancer patients lose hair from radiation chemo.

Loss of Hair, Dry lips, organ damage are side effects of Accutane and there is nothing that can be done to reverse it. Its not like you can remove it from your body. Damage is already done. All the blood work in the world wont help. Sorry to hear this, but this is why you see cancer patients with same symptons.

Loss of Hair, Dry lips, organ damage are side effects of Accutane and there is nothing that can be done to reverse it. Its not like you can remove it from your body. Damage is already done. All the blood work in the world wont help. Sorry to hear this, but this is why you see cancer patients with same symptons.

I've read plenty of stories of people who have a) successfully treated some deficiency(ferritin, biotin etc.) to reverse their symptoms, or b) had symptoms go away of their own volition after 2, 5, 10 years.

So, while I appreciate your helpful, upbeat attitude, I'm going to go ahead and get those bloods done anyway.

My suggestion is to have your thyroid, iron+ferritin, Vit D,B12 and labs for autoimmune disorders such as lupus etc..

If your labs come back okay, let me know and I will try and help or direct you to someone who can. Remeber though get a copy of the lab work as what is in range according to the lab & physican may not be the case. EX: thyroid should be between 2.0 and 3.0 and ferritin for hair to grow back should be up by the 50-70 mark.

I have to agree with nitemare as for some Accutane can do irreversible damage to one, just depends how bad off you are. I have read patients with cancer who suffer problems life long from chemo.

cancer can be cured. and cancer patients lose hair from radiation chemo.

 

 

 

 

Loss of Hair, Dry lips, organ damage are side effects of Accutane and there is nothing that can be done to reverse it. Its not like you can remove it from your body. Damage is already done. All the blood work in the world wont help. Sorry to hear this, but this is why you see cancer patients with same symptons.

 

Also, most cancer patients who undergo chemo regrow their hair.

cancer can be cured. and cancer patients lose hair from radiation chemo.

 

 

 

 

Loss of Hair, Dry lips, organ damage are side effects of Accutane and there is nothing that can be done to reverse it. Its not like you can remove it from your body. Damage is already done. All the blood work in the world wont help. Sorry to hear this, but this is why you see cancer patients with same symptons.

 

 

Also, most cancer patients who undergo chemo regrow their hair.

 

So to sum it up its not a chemo.

Loss of Hair, Dry lips, organ damage are side effects of Accutane and there is nothing that can be done to reverse it. Its not like you can remove it from your body. Damage is already done. All the blood work in the world wont help. Sorry to hear this, but this is why you see cancer patients with same symptons.

 

I've read plenty of stories of people who have a) successfully treated some deficiency(ferritin, biotin etc.) to reverse their symptoms, or b) had symptoms go away of their own volition after 2, 5, 10 years.

 

So, while I appreciate your helpful, upbeat attitude, I'm going to go ahead and get those bloods done anyway.

This made me laugh. I agree with getting labwork done as you just never know if the results may help steer you towards improvement.

As promised, my blood test results for Thyroid and Iron:

Thyroid - 2.32 mIU/L

Ferritin - 76 ug/L

These are both normal.

I've asked for some more tests to check I'm not auto-immune.

The doctor was extremely confident in stating there is no chance I will have this but will do it anyway to 'put my mind at rest'.

Don't know where to go once these come back as okay (as I expect they will).

Indigo- Thoose are good levels so that is good, however I know it still doesn't give you an answer.

Did you have them check other hormones such as testerone????? Let us know about the other tests and I wonder how they test for autoimmnue in the U.K. vs here in the U.S. if it is the same labs done.

Anyway, Have you stopped the zinc? Have you tried streching for the muscles and lower back pain???? Have you tried staying away from acidic foods and drinks to help the dry eyes some???

Indigo- Thoose are good levels so that is good, however I know it still doesn't give you an answer.

 

Did you have them check other hormones such as testerone????? Let us know about the other tests and I wonder how they test for autoimmnue in the U.K. vs here in the U.S. if it is the same labs done.

 

Anyway, Have you stopped the zinc? Have you tried streching for the muscles and lower back pain???? Have you tried staying away from acidic foods and drinks to help the dry eyes some???

Hey.

Yeah - they're doing testosterone with these ones. Testerone isn't another hormone is it?

My muscles seem okay at the moment.

I've been doing press-ups the last few days, whereas before I'd feel bruised for a couple of days from doing as little as fifty.

I have stopped the individual zinc tablet, though I take 'vitamins for hair' which includes 100% RDA.

All I drink is Water (lots of it) and green/camomile tea, but I haven't been avoiding acidic foods as I very much enjoy apples/other fruits and don't want to have to avoid them just for the sake of this. I doubt very much they effect my eyes.

x

OP here, I forgot my password. The doctor told me my liver function and thyroid are normal(still waiting on ferritin level), although he did not give me the exact figures. Back to the drawing board, I guess.

Ok I know this is a very old post, but I figured reviving it would be better since I searched and its very relevant. I've been off accutane for almost four years now and the only side effects that in still seeing are a little bit of redness which is very sporadic and I'm not too worry about BUT ALSO hair loss, not as dramatic as when I was on accutane but still significant, and its beginning to be very noticeable. Please if anyone found a way to regrow your hair after the drug I would love to know, I was taking biotin daily but didn't notice any regrow, just a slower pace of hair falling.