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On 11/2/2012 at 12:37 PM, Livetoregret said:On 11/2/2012 at 10:58 AM, oli girl said:On 11/2/2012 at 10:48 AM, Livetoregret said:On 11/2/2012 at 10:30 AM, oli girl said:On 11/2/2012 at 7:22 AM, Livetoregret said:On 11/1/2012 at 7:55 AM, jamie10 said:On 11/1/2012 at 1:25 AM, Chico Esposito said:I've been experimenting with natural cod liver oil, taking 2ml twice a day and boom within 10 minutes, face gets tight, rosacea all over my face and that pulsating burning sensation below the skin. Skin is hot to touch, dryness in my eyes, mucous membranes, dryness all over my body and my eyes look slightly bloodshot (redveins in them). I look like shit.....hair looks frail and brittle, no oil whatsoever on my face, like a drugged up shrivelled prune with a pulsating red face. Skin condition starts cracking up after about a week or so on cod liver oil, not in a good way...in a zero moisture kind of desert valley way. There is no moisture in my eyes so they sting.
Powdered and capsule kelp does nothing for me, i feel it's a waste of time. The liqua kelp might be different because it contains potassium iodine, which is synthetic but it's what they use in nuclear radiation fallout to protect the thyroid. The guy that recomended that said 3 drops a day and thats easily enough. I cant comment on it's effectiveness because i haven't really bothered with the liqua kelp as i've been taking capsules. Caps are a waste of money in my opinion.
Water does something, i'm totally parched it feels like my whole insides are drying out, so drinking 2 litres of water in one sitting has cooled me down abit. I think water has replenished a small bit of the chronic systematic dehydration. I really wanna try Hyaluronic acid as i'm convinced it will mitigate some of the dryness side effects from the reaction to vitamin A. One molecule of hyaluronic acid holds hundreds of molecules of water, so they both have to go hand in hand.....loads of water for me.
Heavy duty liver protectors as well, the big guns, milk thistle isn't gonna do much whilst i'm taking this cod liver oil, so stronger than that.
Hey Chico Esposito - I can totally relate to the symptoms you describe above when you were taking cod liver as an experiment.
I was just wondering how you cope with these symptoms regularly (with or without taking cod liver)?
I have tried endless topicals, but it seems as though the problem is deeper down. I get worsening of symptoms (the tight, hot feeling and bloodshot eyes) at different times of the day. So it can't simply be dry skin...
I have tried what feels like every supplement out there (turmeric, mepacrine, GLA, biotin, b vitamins etc. etc.) with no significant effect on these symptoms...
I am now starting to take neurontin which is for nerve pain. Essentially I am trying to kill of the terrible sensations I feel on a daily basis with this. Seems extreme but it seems logical. I wish I could kill the sensations in my eyes and face! My bodily skin feels fine...
Jamie - the sensation you describe in your face & around your eyes - can you describe it more?
I have the most unbearable sensation in my face - a feeling of tightness and severe pressure especially around the eyes, forehead and cheeks.
I know in my case its due to the severe lack of hydration in my skin. My cheeks & eyes are sunken and the skin in stretched tight and feels as though the muscles are taught its as if all the facial fat has deteriorated. temples are sunken also.
When I started to experience this sensation was when my skin started to wrinkles and drop as there is NO hydration in my face whatsoever.
It doesnt sound as though anyone has had any real benefits/ lessening of dryness with any supplements.
I honestly think our sebacious glands have been detroyed.
Evelyn - does this describe the siutation with your skin also? BTW - How old are you?
On 10/31/2012 at 11:39 PM, oli girl said:On 10/31/2012 at 8:20 AM, Livetoregret said:Hi Chico, thanks for your response.
What was your dosage/duration?
It seems quote apparent the vast majority of us were over prescribed to high or a dosage & or length or time on it.
My body externally is just drying up like an old boot so my hair is a sure fire indicator of the desert terrain that is my insides, as well as my skin.
Jen - endocrinologist says there's nothing to treat. That so many people have nodules & have no issues.
Most recent tests showed: TSH: 0.45 ( range - 0.5 - 4.5), FT4 - 18 ( range 10-20), FT3 5.4 ( range: 3.5 - 6.0) - antibodies are 46 (<60) so within normal, and Anti Thyroidal peroxidase Abs were 98 (<60) so high.
After 18 mnths of losing hair there's been minimal regrowth, it just continues to shed non stop while my skin becomes tighter & dryer and more uncomfortable everyday.
I'm concerned about mixed connective tissue disease.
Okay So reading through your posts this is what I have got! You have positive ANA, Positive Autoimmune thyroid antibodies, Postive RF Factor (Rhuematoid) a abnormal TSH ( 0.5 is 0.50), You say that Drs say many people have nodules and no issues....THE PROBLEM IS YOU ARE HAVING ISSUES!!!!!!!!!!!!!!!
My advice to you is the same you need to research Hasimoto's and you need to go back to your Endo or find an New one!!!!! Hasimoto pts go through a hyper thyroid stage as it is attacking the thyroid,until it is destroyed and you develop a goiter. Hasimotos is a lot easier to treat then Grave's. Also Nodules in the thyroid can produce and spew TSH and cause hyperthyroid also.... Did they do a uptake scan?????
Hasimoto's symptoms:
1. [Edited link out]
2.[Edited link out]
(good read)
3. http://thyroid.about...tos_Disease.htm
(huge website that has fourms/info and such)
Hasimotos's can cause Raynaud's etc.... Do research!!!! I always say I don't if I am lucky that my labs were off and I developed diseases from accutane or would it have been to have all theese issues and symptoms and normal labs....You have positive labs and symptoms you just need to get to the a phsyican tell him you symptoms, so him your previous labs and get some help, along with a good diet, exercise, supplements you will feel better, until then you won't. [Edited image out]
On 10/31/2012 at 10:06 AM, Livetoregret said:By the way everyone - I contacted the pharmacy that dispensed the prescription to determine exact cumulative dosage.
12 boxes of 20 mg. Weight 54kg = 14,400 mg.cumulative dosage.
Now - I understand from what I've read that the absorption is INCREASED when taken with food.
I was never instructed to do so and took it with water or tea or something, does anyone have any theories on the medication being absorbed and metabolized more thoroughly without being taken by food - I honestly think that the reason I have been so badly affected is due to the way its been absorbed.
I know "they" say that food decreases the level of absorption, but I feel it may be the opposite and directions to take it food are to actually DECREASE the absorption directly into tissues. Roche are hardly going to inform people of the direct damage to tissue now are they....opinions???
It's asorbed more if taken with fatty foods! I had a total of 17,500mg cumulative dosage at 1115-120pds!
How do we know this is the case though? That info comes from Roche and I certainly dont trust their reason for recommending it be taken with food.
I think that is to bind to the food to be excreted.
Accutane is a derivative of Vit A, which is a fat soluble vitamin. Like Vit D is fat soluble and if you don't take it with a meal or some fat it won't asorb as well. Either way though doesn't matter how much you take, (people have damaged on as little as 20mg or as little as a month) what you take it with, etc...It's pure poison!
Yes, I totally agree it doesn't matter either way, But its synthetic, I do not trust anything Roche have stated about the product.
Ive been hit so hard that Im considering every possibility as to why...
It's a chemotherapy drug for rare cancers. It cause cell death and alters dna ( I & others believe) though there are a lot of theories and a lot of hx and info out there. I would start by fixing the thyroid. I can't imagine having abnormal labs and physicians stating that it's not a big deal I'd be pissed.
have just had more labs taken today to test for inflammatory markers ( lupus & other autoimmune), ANA,ENA,Rf again, as well as thyroid.
So has anyone actually worked on lengthening telomeres yet or used anything to repair this damage successfully?
We all need a stem cell transplant
There is a lab that will test them and I posted this link about a wk ago on a guy who posted on Topix. There is a drug out there that is being studied! I'd have to look back at Nathan's report on the lab and some other posts on the name of the drug. http://www.topix.com/forum/drug/accutane/T9QJ8DO1TLI41VBPN/p23 post # 479
I am not discussing side effects right now rather Indigo Rush had a topic about the cause of acne a few pages back and he is totally correct , diet = acne .
Acne Vulgaris is a cosmetic condition of the western world , I did some more research
as I often do and stumbled across a article from the American dermatology JAMA and it totally explains the cause . The people who live in Kitava had next
to nil obesity problems , diabetes , cardiovascular conditions and..... zero acne in fact the mortality age was 75 plus yet three out of four chain smoked , interesting
about the same life expectancy as in the western world , yet without the aid of prescription drugs er poison ha...
here is the article interesting read.
http://archderm.jamanetwork.com/article.aspx?articleid=479093
Many of you are talking about having negative side-effects when you eat food with pro-vitamin A (retinol).
Why do you guys think you get side-effects? How can this be reversed? I feel this may be the key to understanding what Accutane has done to our bodies.
I also think it is a key topic. The method of dealing with it, to simply avoid retinol foods, while necessary, is not really addressing the problem. Avoidance will eventually cause problems on it's own, if it isn't already.
Personally I believe the Vitamin A receptors in the body are just messed up and have become intolerant to Vitamin A. Almost like an Autoimmune issue. Whether this is limited to the gut, I'm not sure.
Like I've said previously, I have read that large amounts of Vitamin A can suppress Thyroid, and tolerance to Vitamin A should improve if you fix your thyroid. I haven't tested this myself however, not yet anyway.
Many of you are talking about having negative side-effects when you eat food with pro-vitamin A (retinol).
Why do you guys think you get side-effects? How can this be reversed? I feel this may be the key to understanding what Accutane has done to our bodies.
I also think it is a key topic. The method of dealing with it, to simply avoid retinol foods, while necessary, is not really addressing the problem. Avoidance will eventually cause problems on it's own, if it isn't already.
Personally I believe the Vitamin A receptors in the body are just messed up and have become intolerant to Vitamin A. Almost like an Autoimmune issue. Whether this is limited to the gut, I'm not sure.
Like I've said previously, I have read that large amounts of Vitamin A can suppress Thyroid, and tolerance to Vitamin A should improve if you fix your thyroid. I haven't tested this myself however, not yet anyway.
I felt my energy was lacking, so I began taking care of my thyroid. I've been supplementing with kelp and selenium, and it helps tremendously with energy. I strongly believe that Accutane negatively affected my thyroid, and subsequently my energy levels.
When I take it, I can tell my Adam's apple looks bigger (because your thyroid expands a little to absorb the iodine from the kelp). I also feel warmer on days that I take it, and on days that I don't I can even feel my thyroid is "cold".
It hasn't improved my reaction to retinol (vitamin A) in foods however. I do think these side-effects have a lot to do with the gut. Many have said they got relief from colon-cleanse type things.
The question is still whether this is epigenetic (gene expression), or something else.
Many of you are talking about having negative side-effects when you eat food with pro-vitamin A (retinol).
Why do you guys think you get side-effects? How can this be reversed? I feel this may be the key to understanding what Accutane has done to our bodies.
I also think it is a key topic. The method of dealing with it, to simply avoid retinol foods, while necessary, is not really addressing the problem. Avoidance will eventually cause problems on it's own, if it isn't already.
Personally I believe the Vitamin A receptors in the body are just messed up and have become intolerant to Vitamin A. Almost like an Autoimmune issue. Whether this is limited to the gut, I'm not sure.
Like I've said previously, I have read that large amounts of Vitamin A can suppress Thyroid, and tolerance to Vitamin A should improve if you fix your thyroid. I haven't tested this myself however, not yet anyway.
I felt my energy was lacking, so I began taking care of my thyroid. I've been supplementing with kelp and selenium, and it helps tremendously with energy. I strongly believe that Accutane negatuively affected my thyroid, and subsequently my energy levels.
When I take it, I can tell my Adam's apple looks bigger (because your thyroid expands a little to absorb the iodine from the kelp). I also feel warmer on days that I take it, and on days that I don't I can even feel my thyroid is "cold".
It hasn't improved my reaction to retinol (vitamin A) in foods however. I do think these side-effects have a lot to do with the gut. Many have said they got relief from colon-cleanse type things.
The question is still whether this is epigenetic (gene expression), or something else.
What kelp do you use? somebody had muscles effects. i did a lot of gym when i was on accutane and i have a lot of pain in my muscles. For the energy L- carnitine works, zinc works for a better digestion a bit and sexual simtoms, vitamin E for skin. Drink natral lemon juice help with bad digestion after heavy foods.
I have had significant improvement with my sexual sides with VitD supplementation during the last 2 weeks.
I am having 20-30 ug = 800-1200 IU VitD3 (Sunvite from Holland&Barrett UK) everyday.
I have seen studies regarding Accutane's effect on VitD receptors previously which it seems might be related.
@ chico esposito - thanks for that information! I will try the aloe vera as you have mentioned. it sounds good 
As for vitamin d - how much have people taken? I think I will give it a shot but I want to use it safely as it can be stored in the body. I thought I purchase some vitamin d spray from amazon which will give about 3000iu of vitamin d3 with each spray.
What kind of doses have people been taking of vitamin d3? And for how long have you been/were you taking it for?
Thanks
So I've been breaking out recently... I don't really understand why.
I have 5 pimples around my cheek and chin.
I've been taking Taurine, methionine, glutamine, enzymes and probiotics.
It doesn't make sense to me because I'm taking liver boosting supplements but my body isn't pushing out toxins that way...
Any ideas?
Also the taurine has helped my dry eyes tremendously
On 11/4/2012 at 9:23 PM, jamie10 said:@ chico esposito - thanks for that information! I will try the aloe vera as you have mentioned. it sounds good [Edited image out]
As for vitamin d - how much have people taken? I think I will give it a shot but I want to use it safely as it can be stored in the body. I thought I purchase some vitamin d spray from amazon which will give about 3000iu of vitamin d3 with each spray.
What kind of doses have people been taking of vitamin d3? And for how long have you been/were you taking it for?
Thanks
Vitamin D overdose is practically impossible. Some people take up to 10,000 IU a day. I was doing this, but my muscles and joint becan feeling really stiff, very weird feeling. So I've been taking 4000 IU and feel better.
Vitamin D has definately helped energy, libido, hair, and other things for me.
I just wanted to post that I've been dealing with hair loss and erection problems for over a year now after only 6 weeks of use. I've tried just about everything and spent thousands at doctors. I recently bought a juicer and started making a blend of carrots, cucumbers, kale and lemons. The last three days, I've added ginger root. I feel better than I have since pre-accutane. Erections are harder/fuller, hair loss has slowed greatly.
I'm not trying to say that consuming lots of ginger is going to cure everyone, but it has helped me, and I just wanted to let people know.
Question : Do any of you guys consume alcohol at all , I know if I over indulge in beer my side effects get worse ie I get back pain again , my eyes are much drier
and red the next day my hair loss seems to increase , I get a pressure feeling on the top of my forhead , alcohol and the synthetic Hitler drug ( my custom name ) don't mix
too well . However if I only have a few beer once per week I am fine , still I find it's best to avoid alcohol , isotretinoin the gift that keeps on giving , sarcasm I like it ha..
I ordered some chewable vitamin D on the recommendation of Bosnic , hope it helps me.
So I've been breaking out recently... I don't really understand why.
I have 5 pimples around my cheek and chin.
I've been taking Taurine, methionine, glutamine, enzymes and probiotics.
It doesn't make sense to me because I'm taking liver boosting supplements but my body isn't pushing out toxins that way...
Any ideas?
Also the taurine has helped my dry eyes tremendously
Started taking taurine today as well.
Cut out glutamine, some people get really bad acne from glutamine, I am one of them.
Hair loss has been my latest accutane side effect. Been losing more hair each day along with a horribly itchy scalp that I've been unable to sleep at night. My wife recently bought a product for me called Lily Hair Tonic, a Chinese herbal remedy that I've been applying for the past two days. Fortunately, this appears to have relieved the itchiness and I've been able to sleep the past two nights 
) I've also starting supplementing Diatomaceous Earth and Biotin to slow down hair loss. Maybe hair loss has slowed down a little bit though it seems I'm still losing some hair.
So far little luck with libido but thinking of supplementing with higher dose of Vit D to see if that makes a difference.
I just wanted to post that I've been dealing with hair loss and erection problems for over a year now after only 6 weeks of use. I've tried just about everything and spent thousands at doctors. I recently bought a juicer and started making a blend of carrots, cucumbers, kale and lemons. The last three days, I've added ginger root. I feel better than I have since pre-accutane. Erections are harder/fuller, hair loss has slowed greatly.
I'm not trying to say that consuming lots of ginger is going to cure everyone, but it has helped me, and I just wanted to let people know.
I've also been juicing a lot lately too juicing carrots, cucumbers, parsley, green chard, kale, lemon, apples. May increase ginger root intake to see if that improves libido at all.
On 11/1/2012 at 12:53 AM, johnj3 said:Thanks again...
what do you use to season your meat and vegetables and quinoa with? ive been using some old bay... i want to use soy sauce but im not sure its gluten free... also i wanted to use Sofrito tomato cooking base on some beans the other day and although there was no wheat in the ingredients list it said "contains: Wheat" on the bottom? how is this possible? is this still bad for me?
do you consider the amount of sugar in ketchup negligible? or is it still bad? also do you eat fruit? i love fruit...
any other advice on how to cook good-tasting meals with some moderate variety (how to season them) without using sugar or wheat?
thanks again... im in the middle of a severe cold right now but once im better i will report back if i think the non-gluten diet is helping
I love Old Bay seasoning. Go for it! I like quinoa warmed with almond milk, stevia and cinammon for breakfast. Oats are sometimes gluten-free, so oatmeal for breakfast. Eggs and bacon are okay, too. I like all of the 'body ecology' recipes I have tried so far...Also cooks illustrated magazine and books (like the 'Family Cookbook' is an old standby. Literally everything in there is a solid recipe. If you want the soy sauce flavor, try tamari. Same flavor, and gluten-free. You may need to thin it with a touch of water. [Removed] Sofrito? I am not sure why that is but if something contains wheat, even a small amount can trigger a reaction in the gluten-sensitive body. I ate some gluten last week and my joints started to ache, my muscles became sore, I became tired and irritable. So, the choice is up to you as to how strict you are with your diet. Any sugar, even in fruit will feed candida bacteria so if you are trying to starve it out of your body, you will want to not even eat ketchup. You can always make your own with stevia of almost any condiment. One of the best recipes I've made from the body ecology book was the almond mayonaise. I use it for salad dressing, veggie dip, spread on gluten-free sandwich, whatever. Many friends have commented that I should make it in quantity and sell it. It's really that good. If you're curious: http://bodyecology.com/recipes/almond-mayonnaise.php . Also here is a basic list of stuff to eat and what not to eat.
List of stuff you can eat:
Vegetable Juices
Herbs & Spices
Tea
Kefir
Raw Butter/Ghee
Lemons, Limes, Cranberries, unsweetened Black Currant Juice
Raw Vegetables & Salads
Green Vegetables
Soaked and Sprouted almonds
Seeds like Pumpkin or Sunflower (except for sesame)
Red Skin Potatoes
Ocean Vegetables
Winter Squash
Root Vegetables
Grains: Quinoa, Millet, Amarinth
Shellfish
Fish
Fowl
Beef
Eggs
Sea Salt
DO NOT EAT:
Nuts
Beans
All Other Grains
Hard, Salty Cheeses
Coffee
Yogurt
Milk
Cottage Cheese
All Other Fruits
Drugs or Alcohol
Sugar
Hi guys,
I just had a sinus infection from seasonal allergies that threw off my circadian rhythm. It turned out to be a hard lesson that I have to maintain my biorhythm. That means only eating moderate to small size meals while the sun is up, and not drinking after sundown, and sleeping in a dark room at a good temperature with no interruptions. I also started blending my meals to make them easier to digest.
If I don't maintain that biorhythm, my digestion gets shot to hell, I'm brainfogged, and it's generally bad news.
I've had ultrasound, blood and urine tests and the only thing they've found was hypothyroid. I'll be ordering a bunch of supplements soon.
Cheers,
JB
Also, let me point out that shrimp and scallops contain iodine - I eat both every day. Scallops also contain high methionine. I noticed people are supplementing with both. It's better to get them from natural sources. You also get sea salt, which is supposed to be quite good for you. The balance of minerals in sea water is almost the same as in blood.
We seem to be finding some things that work. I'm very excited about that. I think more people should try bone broths and vitamin D, and look at thyroid function.
Hi guys,
I just had a sinus infection from seasonal allergies that threw off my circadian rhythm. It turned out to be a hard lesson that I have to maintain my biorhythm. That means only eating moderate to small size meals while the sun is up, and not drinking after sundown, and sleeping in a dark room at a good temperature with no interruptions. I also started blending my meals to make them easier to digest.
If I don't maintain that biorhythm, my digestion gets shot to hell, I'm brainfogged, and it's generally bad news.
I've had ultrasound, blood and urine tests and the only thing they've found was hypothyroid. I'll be ordering a bunch of supplements soon.
Cheers,
JB
Also, let me point out that shrimp and scallops contain iodine - I eat both every day. Scallops also contain high methionine. I noticed people are supplementing with both. It's better to get them from natural sources. You also get sea salt, which is supposed to be quite good for you. The balance of minerals in sea water is almost the same as in blood.
We seem to be finding some things that work. I'm very excited about that. I think more people should try bone broths and vitamin D, and look at thyroid function.
The thyroid is definately part of the equation. Accutane has been shown to damage it, and slow it down. Natural souces of iodine have helped me a lot in terms of energy, and hair thinning. Vitamin D3 has helped too, the best form is in oil because it absorbs better.
Yet I still have severe side effects when I consume pre-formed vitamin A (retinol): joint and back pain, hair thinning, dry skin. I think we should keep the conversation on the actual science behind it. I know it's not completely understood, but anecdotal evidence will also contribute.
There is a thread on here where a guy found relief from his side effects and vitamin A sensitivity through colon cleansing with a magnesium oxide based product. And there was another who said he found a bit of help from taking in large amounts of beta-carotene. Both very interesting. I've tried beta-carotene and it gave me diarhea which is a known side-effect of it, and have yet to try any sort of colon cleansing.
The question still remains: Are the long-term side-effects the result of altered gene expression (epigenetic), or is there some leftover residue that somehow still remains in our bodies?
I have heard many theories about how it may be "lodged" in our colons, mostly from people who have found relief through colon cleansing.
Open queston: Has anyone found relief from vitamin A sensitivity after Accutane? How?
Things don't get lodged in the colon, and if they do surgery or death quickly results.
The magnesium angle however is interesting. This is essentially a magnesium megadose. I believe I've read of epsom salts also helping. This is exactly the same thing - a mega-dose of magnesium. Scallops are also high in magnesium. So I think the magnesium angle is also one worth pursuing.
Results are in:
CCP Abs - <5 (>5)
RF factor - 27 ( 0-14)
ENA - Negative -
Anti DNA - <5( 0-6)
ANA - Not detected - last time (/3/12) was a positive??? (1:40) speckled pattern
I have no idea where to go from here.
Well ANA can flucate depending which autoimmune disease it is and most in the begining or for years can go in and out. Some can go under remisson for a while and pop back up.The thing is your RF factor which is indicative of Rheumatoid is still postive. Are they dismissing that???? Did they restest your thyroid antibodies or tsh? Just have circulating thyroid antibodies can cause symptoms even if tsh is normal, but last time yours wasn't. What did the idiot docs say?
Hi jen,
A doctor last night suggested scleroderma. Im so scared as my face continues to feel so tight and uncomfortable.
Yes, TFT was tested again
TSH 0.47 ( 0.40 - 3.50)
Thyroglobulin Ab - ,20 ( 0-40)
Peroxidase Ab - <10 (0 - 35)
These results are the same as last time I had them tested in July - TSH is slightly lower.
The doc said there's no cause for concern, I cant take this constant merry go round of doctors, tests and no outcome......
RF factor of 27 is lower than last time ( in the 40's)
I mean anti DNA is the marker for SLE (lupus) right??
Results are in:
CCP Abs - <5 (>5)
RF factor - 27 ( 0-14)
ENA - Negative -
Anti DNA - <5( 0-6)
ANA - Not detected - last time (/3/12) was a positive??? (1:40) speckled pattern
I have no idea where to go from here.
Well ANA can flucate depending which autoimmune disease it is and most in the begining or for years can go in and out. Some can go under remisson for a while and pop back up.The thing is your RF factor which is indicative of Rheumatoid is still postive. Are they dismissing that???? Did they restest your thyroid antibodies or tsh? Just have circulating thyroid antibodies can cause symptoms even if tsh is normal, but last time yours wasn't. What did the idiot docs say?
Hey all, post Accutane user, while taking the drug had some serious side effects, which have largely disappeared since going off the drug. The one that persists however is I have zero libido, bad ED, and i think my johnson is less sensitive.
Im looking but finding it hard to see anyone else who has actually made a recovery...most people seem to be complaining its permanent. Does anyone know of anybody who recovered their libido. If so how long did it take, and do they have any tips?
I have been off the drug for about 7 weeks, and shown no improvements in the way of libido
Thanks for any help, i hope you all start feeling better soon!!
BTW indigo, just wanted to say i watched your vids and i think you're a person of amazing strength!!
On 11/6/2012 at 10:43 AM, Livetoregret said:Hi jen,
A doctor last night suggested scleroderma. Im so scared as my face continues to feel so tight and uncomfortable.
Yes, TFT was tested again
TSH 0.47 ( 0.40 - 3.50)
Thyroglobulin Ab - ,20 ( 0-40)
Peroxidase Ab - <10 (0 - 35)
These results are the same as last time I had them tested in July - TSH is slightly lower.
The doc said there's no cause for concern, I cant take this constant merry go round of doctors, tests and no outcome......
RF factor of 27 is lower than last time ( in the 40's)
I mean anti DNA is the marker for SLE (lupus) right??
On 11/6/2012 at 10:16 AM, oli girl said:On 11/6/2012 at 9:59 AM, Livetoregret said:Results are in:
CCP Abs - <5 (>5)
RF factor - 27 ( 0-14)
ENA - Negative -
Anti DNA - <5 ( 0-6)
ANA - Not detected - last time (/3/12) was a positive??? (1:40) speckled pattern
I have no idea where to go from here.
Well ANA can flucate depending which autoimmune disease it is and most in the begining or for years can go in and out. Some can go under remisson for a while and pop back up.The thing is your RF factor which is indicative of Rheumatoid is still postive. Are they dismissing that???? Did they restest your thyroid antibodies or tsh? Just have circulating thyroid antibodies can cause symptoms even if tsh is normal, but last time yours wasn't. What did the idiot docs say?
ANA and speckled usually means lupus, however it can possibly mean thyroid and others. ANA alone is the standard for autoimmune in general! I would say 1 your TSH is on the verge of Hyperthyroid, Which have you looked that up yet? People have symptoms at a TSH 1.0 and below. Everyone is diffrent and labs don't always tell the whole story not to mention you have a nodules on yours. Also they can't disregard your RF factor. Rheumatoid can have flares and then go into remisson the same with Autoimmune thyroid and certian others.
As for Lupus it is usually like I stated above, however I also had a DS antibody strand come back mildly postive which is 100% indicative, but all other tests were negative that follows that one. There are 3 types of Lupus 1 being caused by medications...However, I ended up with autoimmune thyroid, sjrogren's and type 1 Diabetes all autoimmune.
So I take it they aren't giving you any meds? Also FYI Hyperthyroid can cause skin thickening Pretibial myxedema, thyroid dermopathy. Though it's usually on the legs it can appear anywhere. [Edited link out]
Things don't get lodged in the colon, and if they do surgery or death quickly results.
The magnesium angle however is interesting. This is essentially a magnesium megadose. I believe I've read of epsom salts also helping. This is exactly the same thing - a mega-dose of magnesium. Scallops are also high in magnesium. So I think the magnesium angle is also one worth pursuing.
I know you've had success from a specific diet from an earlier thread (very paleo-like). Congrats on that. I've also had a lot of success following a paleo diet.
But one things that bothers me is not being able to tollerate Vitamin A in animal products. How you had any problems with it? When I consume eggs or dairy (or supplements containing retinol), I get joint/bone pain. I've already been shown to have very low bone density for my age.
Again, have you experienced any problems with vitamin A? If so, have you been able to improve on it?