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Thread: In need of advice and guidance please Roaccutane, acne and thyroid!

  
  1. #1
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    In need of advice and guidance please Roaccutane, acne and thyroid!

    Hello there.

    My name is Stefan. I'm 21 and male.
    Recently, I have been diagnosed with Hypothyroidism.

    I will start by saying that I am very active in relation to doing research about my health.
    I have taken things into my own hands over the last few years.
    Back in 2005, I was in perfect health.
    The only thing wrong with me was I had Acne.
    I ended up taking the drug 'Roaccutane' and boy, do I wish I didn't(!)

    Since then, I have seen my health decline.
    I've found out a lot about the world.
    Roaccutane was never invented for acne.
    Originally, it was invented for cancer.
    If you're wondering why the FDA (or whoever governs the UK's drugs) would approve such a drug for something like acne, you're not alone.

    Briefly, I was told about a dozen side effects (for example: nose bleeds, hair loss, depression, deformed babies) that were linked to this drug. I was also told they were incredibly rare, i.e. depression in 1-2% of cases. Well, frankly that's bullsh*t because I ended up getting a whole host of problems. I was also told any I got would be temporary.

    I ended up stopping the drug after 5 months (I was due to take it for another month) because I seriously was in danger of killing myself or others while on it. Roaccutane is really screwed up.
    Unfortunately, things have got worse since 6 years ago.
    I'm no longer crying for no reason and going crazy (like I did), but I now have hair-loss, sexual dysfunction (0-10% of a normal sex drive - did I mention I'm a 21 year old dude?!), low energy, dry eyes and dry mouth, brain fog, long-term constipation (I get plenty of fibre and eat a good diet), depression and social anxiety.
    It really messed me up, and I've tried all sorts since stopping the drug.

    It was very frustrating, because for a while I was going to the doctor's and telling them all of this.
    They did blood tests and reported everything was fine and, basically, that these problems were in my head.
    1) I'm not crazy and
    2) I'm not alone. A lot of people have taken this drug and are now in the same position as me. I use a forum over at acne.org and talk regularly to people in the same boat as me.

    Anyhoo... 2 years ago I read about hypothyroidism.
    I thought 'Finally! This could be what's wrong with me"

    I will interject here and say that I think Roaccutane has damaged my whole body.
    I think it's highly likely that I have hashimoto's disease, and possibly sjogrens syndrome.
    Hashimoto's has been documented as the most common cause of Hypothyroidism.

    (Back to what I was saying)
    When I got a blood test for my thyroid, again (frustratingly) I was told everything was fine.
    I wanted to cry. I felt terrible, and even my parents didn't believe me.
    I was doing everything to get better, including reading dozens of self-help books to fight depression/anxiety.
    I've probably spent 5000 - 6000 on health supplements over the years and I have nothing to show for it.

    Late last year (2011) though, I was tested again, and this time my thyroid appeared out of balance.
    Several months before this, I paid for a saliva test to check for adrenal fatigue, and it showed my cortisol to be very low throughout the day.

    Now, I know I have hypothyroidism and adrenal fatigue.
    I got more test results today, because I wanted to see if my thyroid was getting any better or worse.
    My TSH is now at 4.2 mlU/L. Last time it was 3.72.
    My T4 serum is at 16 which seems to be right in the middle of the range, so no problems there.

    My Doctor, doing his job, is recommending me to take a drug.
    Thyroxine.
    I'm not sure about it.
    I'm so against modern medicine and believe most health problems are self-inflicted (not necessarily intentionally) by eating the wrong foods. I would not be in this position if it weren't for that fooking drug, Roaccutane.

    I'm really just looking for some advice now.
    I know thyroxine is a long-term thing and will never fix the underlying problem (as drugs never do) but I feel like I'm out of options.
    I'm eating the right foods, doing exercise when I feel capable and I don't seem to be getting any better that way.
    Most days I feel like ending my own life because this is so frustrating.

    My worry is that my hair loss (and other problems) started on Roaccutane. There could be many causes for it.
    Is Thyroxine harmful to the body?
    I've briefly looked up the side effects and it doesn't seem dangerous.

    I just really wanted to believe that I could do this by myself, with the help of good old mother nature.
    It pains me to have to get help from the very people who put me in this position.
    It's like they've 'got' me. They've messed my health up, and now they'll continue to take my money.
    I heard something about thyroid treatment being free on the NHS?
    I'm currently unemployed because I was struggling in my job to concentrate.
    I was feeling suicidal most of the time, and just on the verge of crying when people asked me if I was okay.

    I don't know what I'm really asking, but please offer me some help with this



    Stef

  2. #2
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    you situation is really complicated, i'm sorry to hear that.
    i'm not familiar with 'Roaccutane' and UK health system.
    But I can tell you that results like TSH are not always
    accurate.
    for example, i used to feel good when my ths is over 6 and really bad if its below 4 (even normal tsh is around 0.5-5), however last couple of months something has changed with my thyroid and now I feel good even my tsh is now 3.12!!!
    when i started to have problems with thyroid my results were normal (tsh was above 1.5) but i felt really bad and I ended up in hospital

    i know this isn't really helpful but it's some new info for you since you've told I have taken things into my own hands over the last few years.

    good luck, someone from UK will tell you more!

  3. #3
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    @indigorush Dear Stefan, it seems like we are in a zone where don't actually know what is wrong with the body. From what I have read and like you said, it would appear that Roaccutane has damaged your body or at least some glands of it and due to that, you are not feeling well.

    I tell you what, there is a possibility that there is nothing wrong with you but the whole body function is not working in a rythym hence you are feeling very unwell.

    TSH is high but it's not that bad considering your FT4 is 16. You need to get FT3 checked as well to make sure thyroid is not the only reason. We'll come to thyroxine later on but first let's get thyroid sorted.

    Nobody knows why exactly do you get Hashimoto's disease - Well we know the reason but we dont know why it happens in first place. It could be due to a number of supplements which you have taken or it could be genetics. Your thyroid is low from the numbers you have quoted but it shouldnt make you feel as end of the world.....that means there is something else which is not right.

    Let's talk about adrenal....I'll talk from my personal experience. When adrenals and thyroid both are low, that would be end of the world for me. I have been through this and I cannot describe how badly I felt. You say you had a test and it was low throughout the day.....did you do anything to treat your adrenals? What symptoms do you get which you think could be related to adrenals? Thyroxine wouldn't make you feel better if you are low on cortisol (Again talking from experience). And adrenals wouldn't recover if there are no thyroid hormones. So you see....you are in a continous battle of non-ending cycle....one cannot function without other.

    I have spent a lot....a lot and what I have learnt that body doesnt like too many supplements or sudden change in them when you are not healthy. Best is to give it slowly and gradually and let it adopt the change. With low adrenals, you become very sensitive to any supplements and changes.

    Hair, skin, weight, depression etc.....nothing will work correctly if body's glands are not functioning properly. Hair, skin are the last thing which body will repair as they are not required to function the body! Sex drive....one word....any change in hormone and it's gone. With strong adrenals, perhaps you can cope with changes but with weaker ones.....you stand no chance.

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    for the reply Mike.
    I'm aware I'm in a tough situation here.

    I think I have adrenal issues because:

    I feel very tired when I wake up and get slumps throughout the day.
    I seem to have a blood-sugar issue which is known to go hand-in-hand with this.
    Get really tired after big meals.
    I suffer from brain-fog and seem unable to tolerate stress. Feel like breaking down most of the time.

    Think that's about it... Obviously sex-drive could be this and/or thyroid.

    Hope I can make a recovery ASAP!

    It's hard though, because stress is meant to stop healing (and wear out the adrenals more) but when you're living a diseased life, it's damn impossible to not get stressed on a daily basis. Especially when you have to work with all this going on.

 

 

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