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DonnaD

Thyroid Tsh Level

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Hello again!

I am going through a very 'proactive with my health' i.e doctors are rubbish phase, I'm sure lots of you can identify with me.

I have had a lot of blood tests recently, my doctor is humouring me at the moment, and a DEXA scan done (was ok) recently and was told by my doctors receptionist that they were all 'fine'. I asked for the actual results to be faxed to me. My TSH level = 2.96. the reference ranges seem to be different depending where you look. no other thyroid tests were ran. I have almost all the symptoms, but so does fibro which seems to be a 'new' problem, 30 yers agao I would have been diagnosed with hypotheroid (makes you think doesn't it!!) My Dad's side of the family were all obese except for 1 sister.

My symptoms :

Weight gain, libido problems, puffy eyes 7 face, foor focusing, dry gritty eyes, ringing in my ears, sore throat, problems swallowing 'lumpy' feeling, losing my eyelashes, flaky nails, dry skin, i'm very pale, cramps, muscel and joint pain, food sensitivity, gluten , dairy, salicalates (i think) cold hands and feet, terible memory, forgetfull, mentally sluggish, brain fog, poor concentration, loss of motivation, decreassed attention, I avoid going out/meeting people, I'm turning into a hermit!, depression, low energy levels, low early morning basal body temperature usually below 97, apathy...

sensitivity to sun

insomnia. I used to run a profitable business and now I'm medically retired - at 42!

I have been DX as having IBS and Fibromyalgia, and enterolab, gluten sesitivity and casen sensitivity, and malabsorbion. My energy levels increase amazingly on a 'basic' food diet. I am tired of having to educate my doctor. are there any studies on TSH levels being misleading? I did find an interesting article

http://thyroid.about.com/gi/dynamic/offsit...david-derry.htm

"Dr. A P Weetman, professor of medicine, wrote in the article "Fortnightly review: Hypothyroidism: screening and subclinical disease," which appeared in the 19 April 1997 issue of the British Medical Journal, the following groundbreaking statement:

". . . even within the reference range of around 0.5-4.5 mU/l, a high thyroid stimulating hormone concentration (>2 mU/l) was associated with an increased risk of future hypothyroidism. The simplest explanation is that thyroid disease is so common that many people predisposed to thyroid failure are included in a laboratory's reference population, which raises the question whether thyroxine replacement is adequate in patients with thyroid stimulating hormone levels above 2 mU/l."

In response to Dr. Weetman, David Derry M.D., Ph.D., a thyroid expert and researcher, based in Victoria, British Columbia, responded, saying:

"Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions."

I would really appreciate any feedback from others with similar symptoms/diagnosis, am I barking up the wrong tree? or or just barking mad? or should I just stay on the Prozac? I have just visited my doctor and she was wasn't having it at all that the Tsh test is ever wrong, refused to send me for T4, T3 and antibody tests, even though I have medical insurance and they won't come out of her budget. Interestingly my TSH level 2 years ago was 1.5 so it is going up. She just wrote a prescription for more prozac, up to 40mg as she thinks it is clinical depression which of course has many of the same symptoms.

I would really appreciate some advice!

Donna

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I was diagnosed with hypothyroid about 18 months ago, after suffering from many of the symptoms you list. I would not have known if we hadn't had a bunch of bloodwork done following my son's celiac dx, and the help of a good ob/gyn. I thought I was overstressed (multiple family cancers, my son's illness, my own biopsy, etc..) and would just "get over it". My internist was less than excited about my depression, hair loss, dry skin, weight creep, fatigue, joint pain----but I had borderline levels and then none. A simple thyroid replacement has made ALL the difference in my entire life. I feel 42 again, instead of 82. I would strenously argue with your doctor to eliminate the Prozac and TRY a thyroid replacement. They are cheap, simple, nearly side-effect free (I have none) and you've nothing to lose!

Cold hands, feet, nose and ears --- cold enough that you can barely feel them, and then they overreact and turn bright red or bluish -- that's Reyaud's Syndrome, often a partner of Hashimoto's. I've got that too, and had known for years, but nobody ever connected it to the rest of the symptoms and checked my thyroid until now. EVERY one of my 40-ish friends has some level of hypothyroidism--it is reallly common in 40ish women! Good luck! Feel like yourself again :)

Joanna

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Like with every thing else, a range is exactly that - a range - and all numbers in it are NOT optimal for all people. Men usually have slightly higher TSH than woman, and TSH does have a tendency to get higher as one gets older. So a TSH of 4.0 might be absolutely perfect for an 80 year old man, but much too high for a 20 year old woman, who's TSH should be more like 1.0-1.2. There have been some studies done, and I have heard several doctors who specialize in thyroid say that a woman in "child-bearing years" ie, 20s, 30s 40s is most likely to have TSH between 1.0 and 1.5 - definately not higher than 2.0. I would persist in requesting the tests, and if the doctor refuses, find another doctor.

websites: http://www.womentowomen.com/hypothyroidism/testing.asp

http://www.nlm.nih.gov/medlineplus/ency/article/003684.htm

http://www.thyroid-info.com/articles/david-derry.htm

http://thyroid.about.com/cs/publicawarenes...l_tshlevels.htm

Debbie

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I do think you should consult an endocronologist. The diagnoses of of Hashimoto's, in my case took... blood work checking for T3, T4, ultra sensitive TSH, an ultrasound of the thyroid, and a thyroid function/uptake test.

There is a reason why thyroid disease is in the top 10 misdiagnosed, your primary care doctor is only taking one test into consideration when other testing information can complete the diagnoses. Having Celiac Disease/ gluten intolerance increases your statistical odds from 10 to 30% of developing another auto immune disease.

Laura

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You should get your Free T3 and Free T4 checked. They're not the same as T3 and T4, they're the amount of T3 and T4 that are unbound and available. Few doctors check them. I had a below range FT3 reading yet my TSH and totals were fine. I felt like pooh.

As far as thyroid info, if you want to educate yourself there are some great sites out there:

thyroid.about.com and http://altsupportthyroid.org/ are two of the best.

However, I must say my food intolerance symptoms are nearly identical to hypothyroid symptoms and getting off gluten and casein and following the SCD diet did much to restore my energy and brain functioning. But not quite 100%, I still need to supplement with the T3 containing thyroid meds.

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Hello again!

My TSH level = 2.96.

Hi Donna,

The latest normal range for TSH only goes up to 2 (can't remember the minimum now), so anything over 2 is considered to be a problem. It's pretty borderline (subclinical hypothyroidism), but it could absolutely be affecting you. Many people report feeling good when their TSH is around 1.

I would not be surprised if a doctor told you that it was normal. The range used to be higher and a lot of docters are working with old information.

I'd get treated for it to see if it helps.

Susan

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Thank you Susan, Nancy, Laura, Debbie, Joanna,

I will print out some the references and book an appointment with another doctor at the practice. She looked at me like I was mad to suggest that a LAB test could ever be wrong..... Of course I'm a bit depressed, I don't feel well! She isn't totally convinced by the gluten intolerance but can't argue with the fact that it is in the family so I just might have it.

I think it is very relevant that my tsh has risen from 1.5 to 2.96. My additional 25lbs weight gain has gone on my abdominal region it is more than the bloating from the gluten which is much, much better now gluten-free, this fat starts just under my bust is definatly fat as I can pinch it and I look more pregnant than my 6 month pregnant sister! Prior to the past 2 years my pattern of weight gain was the classic 'pear shape' with the extra going on my lower stomach and hips/upper thighs. I now have a waist measurement of 35 -37" but the same hip measurement as I had 2 years ago and the extra 25lbs. Have any of you ladies this pattern of weight gain, I have mentioned to many of my doctors how odd it is for me to have this kind of weight distribution. I will work my way through the links in more depth when the kids are in bed later.

I feel like I should go to medical school, I spend so much time reading medical research :)

I am getting my knees x-rayed, even she could not dispute the really loud noise they make when I straighten my knees out.

Thanks again ladies,

Donna

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I went through ten years of thyroid symptoms and "normal" test results before being diagnosed by an endocronologist.

Most of the test should be ordered by your regular doctor, and the results should be taken to the endocronologist for diagnoses. For example, the test results for my thyroid uptake test would have been considered extremely overactive thyroid function, but when the rest of the tests results were compared it showed the full pattern of Hashimoto's not Graves Disease. (The facial and neck puffiness are a symptom of Hashimoto's)

Laura

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I went through ten years of thyroid symptoms and "normal" test results before being diagnosed by an endocronologist.

Most of the test should be ordered by your regular doctor, and the results should be taken to the endocronologist for diagnoses. For example, the test results for my thyroid uptake test would have been considered extremely overactive thyroid function, but when the rest of the tests results were compared it showed the full pattern of Hashimoto's not Graves Disease. (The facial and neck puffiness are a symptom of Hashimoto's)

Laura

I didn't even know endocronologists existed until this week :):(

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Holy Mackerel! I don't know where I posted it, but I wrote about my thyroid stuff. I had an elevated TSH, and an enlarged thyroid; I was going to a GREAT endocrinologist who kept it under control with Synthroid. Our insurance changed, and she wasn't on the list, so I switched to an endocrinologist recommended by a friend. He told me that I didn't need to be on Synthroid -- stop taking it. Three months later, I was in the psych unit because I just wanted to die. They did the standard bloodwork -- my TSH was 11.5. Once the psychiatrist there saw it, he told me that I had organic depression, and I needed to find a good endocrinologist. I told him who I was seeing, and he repeated, you need to find a good endocrinologist. I told him who I had been seeing, but she wasn't on my insurance. He told me it was worth the money to pay cash. So I do. Because of what that ##$%^&^%% did, Hashimoto's thyroiditis kicked in big time -- I had a thyroid gland that was 4 1/2 - 5 times the normal size on the left, 3 1/2 - 4 times the normal size on the right. It grew backward, and wrapped behind my trachea, and in the front grew under my breast bone. It was cystic, and some of the cysts were hemorrhagic. They can lead to cancer -- so I had to have the whole thing removed. I'd watch my TSH like a hawk.

With regard to the increased belly fat, get tested for polycystic ovary disease (syndrome). I had a friend who was a Nurse Practitioner. She said -- you've gained weight in your belly -- and you're pear shaped. I told her that I thought that I had just maxed out my ass :P She said, seriously, you need to be tested for polycystic ovary and you need to have a fasting insulin level done. She was right -- it was kind of freaky. At any rate, it's just something to ask the MD about.

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I told her that I thought that I had just maxed out my ass :P , seriously, you need to be tested for polycystic ovary and you need to have a fasting insulin level done.

:D:D:D

That is some good advice because PCO is considered to be pre-diabetes. We all know that we have a higher chance of developing another auto immune disease.

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I told her that I thought that I had just maxed out my ass :P , seriously, you need to be tested for polycystic ovary and you need to have a fasting insulin level done.

:D:D:D

That is some good advice because PCO is considered to be pre-diabetes. We all know that we have a higher chance of developing another auto immune disease.

I did have a fasting blood glucose of 4.6 mmol/L, which I was told was 'fine'. :unsure:

What are the other symptoms of PCO? I had been on the Pill like, forever, until I was steralised in May and the 'lump' of fat above by belly button has developed since then so it could well be linked. I had not put two and two together before....... It is certainly not the same as the ibs/gluten bloating I have had for years. I centainly have blood sugar.hypo type problems when I have a 'normal' high carb diet, I gain weight instantly, lbs in a day and binge eat crisps, chocolate etc which I do not do when I eat in a more 'Atkins' style.

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You don't need to have a fasting glucose test. You need to have a fasting INSULIN test. This will tell your endocrinologist if you have an elevated insulin level. If it is high, it means that your cells are becoming "desensitized" to the insulin your pancreas is producing. Therefore, your pancreas has to secrete additional insulin to keep your blood sugar down. That is the mechanism by which Type II diabetes begins.

With regard to PCOS -- I knew that SOMETHING was wrong, because I kept having episodes of some pretty significant pain in my right side, mostly. It would cause me to have to stop & bend over for about 5 minutes, and I was sore on that side for about 2-3 days following. One OB-GYN told me that I had "Chronic appendicitis" and that the only way to take care of it was to have my appendix out, but I didn't have the elevated white count to warrant it. WRONG! It is because the fluid in the cysts is very toxic, and when they rupture, they cause irritation to all the tissues in the peritoneum (inner portion of your abdomen) -- you can potentially develop peritonitis (what people get when their appendix ruptures)

At any rate, you need to get it checked out . . . . I'm tellin' ya, if you've maxed out your ass . . . :P Take care, Lynne

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i was diagnosed at 14 with pcos (about 17 years ago), and 19 with hashimoto's thyroiditis. i would suggest getting a fasting insulin test done as well, especially if you've noticed anything unusual like abnormal periods, excess hair...

anyway, you can pm me if you like, i'll tell you what i know about pcos.

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My TSH always read normal. So, they had to do an antibody and ultra sound, which both were terribly abnormal. My antibodies are 3.5 times the normal for Hashimoto's.

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Hello again!

I am going through a very 'proactive with my health' i.e doctors are rubbish phase, I'm sure lots of you can identify with me.

I have had a lot of blood tests recently, my doctor is humouring me at the moment, and a DEXA scan done (was ok) recently and was told by my doctors receptionist that they were all 'fine'. I asked for the actual results to be faxed to me. My TSH level = 2.96. the reference ranges seem to be different depending where you look. no other thyroid tests were ran. I have almost all the symptoms, but so does fibro which seems to be a 'new' problem, 30 yers agao I would have been diagnosed with hypotheroid (makes you think doesn't it!!) My Dad's side of the family were all obese except for 1 sister.

My symptoms :

Weight gain, libido problems, puffy eyes 7 face, foor focusing, dry gritty eyes, ringing in my ears, sore throat, problems swallowing 'lumpy' feeling, losing my eyelashes, flaky nails, dry skin, i'm very pale, cramps, muscel and joint pain, food sensitivity, gluten , dairy, salicalates (i think) cold hands and feet, terible memory, forgetfull, mentally sluggish, brain fog, poor concentration, loss of motivation, decreassed attention, I avoid going out/meeting people, I'm turning into a hermit!, depression, low energy levels, low early morning basal body temperature usually below 97, apathy...

sensitivity to sun

insomnia. I used to run a profitable business and now I'm medically retired - at 42!

I have been DX as having IBS and Fibromyalgia, and enterolab, gluten sesitivity and casen sensitivity, and malabsorbion. My energy levels increase amazingly on a 'basic' food diet. I am tired of having to educate my doctor. are there any studies on TSH levels being misleading? I did find an interesting article

http://thyroid.about.com/gi/dynamic/offsit...david-derry.htm

"Dr. A P Weetman, professor of medicine, wrote in the article "Fortnightly review: Hypothyroidism: screening and subclinical disease," which appeared in the 19 April 1997 issue of the British Medical Journal, the following groundbreaking statement:

". . . even within the reference range of around 0.5-4.5 mU/l, a high thyroid stimulating hormone concentration (>2 mU/l) was associated with an increased risk of future hypothyroidism. The simplest explanation is that thyroid disease is so common that many people predisposed to thyroid failure are included in a laboratory's reference population, which raises the question whether thyroxine replacement is adequate in patients with thyroid stimulating hormone levels above 2 mU/l."

In response to Dr. Weetman, David Derry M.D., Ph.D., a thyroid expert and researcher, based in Victoria, British Columbia, responded, saying:

"Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions."

I would really appreciate any feedback from others with similar symptoms/diagnosis, am I barking up the wrong tree? or or just barking mad? or should I just stay on the Prozac? I have just visited my doctor and she was wasn't having it at all that the Tsh test is ever wrong, refused to send me for T4, T3 and antibody tests, even though I have medical insurance and they won't come out of her budget. Interestingly my TSH level 2 years ago was 1.5 so it is going up. She just wrote a prescription for more prozac, up to 40mg as she thinks it is clinical depression which of course has many of the same symptoms.

I would really appreciate some advice!

Donna

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Your symptoms could also match a number of autoimmune conditions - for example Behcet's:

The symptoms of Behcet's syndrome depend on the area of the body affected. Behcet's syndrome can involve inflammation of many areas of the body. These areas include the arteries that supply blood to the body's tissues. Behcet's syndrome can also affect the veins that take the blood back to the lungs to replenish the oxygen content. Other areas of body that can be affected by the inflammation of Behcet's syndrome include the back of the eyes (retina), brain, joints, skin, and bowels.

or Sjogrens

Sjogren's syndrome is an autoimmune disease. Autoimmune diseases are characterized by the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. This particular autoimmune illness features inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to mouth dryness.

Sjogren's syndrome that only involves gland inflammation (resulting dry eyes and mouth, etc.), and is not associated with a connective tissue disease, is referred to as primary Sjogren's syndrome. Secondary Sjogren's syndrome involves not only gland inflammation, but is also associated with a connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma.

Just to name 2...you need to see an internist before this yahoo pats you on the back and say "depression", here's some happy pills"

**I do not discount the serious nature of depression - I receive meds of just that!..But only after other possible immune conditions were ruled out.**

Sandy

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recently and was told by my doctors receptionist that they were all 'fine'. I asked for the actual results to be faxed to me. My TSH level = 2.96. the reference ranges seem to be different depending where you look.

Yes, this happened to me also. One told me I was in the "Normal range", another doctor told me I was high. I really don't like doctors after all the crap I've been through.

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My TSH level = 2.96. the reference ranges seem to be different depending where you look. no other thyroid tests were ran.

Donna , Read up about Hashimotos Thyroid. Its autoimmune and linked to other autoimmune diseases like Celiac. Once you have Hashimotos - TSH testing is useless. You need Thyroid Antibodies tested and if they show up - you need a good medication like Armour Thyroid - to bring the Antibodies down to 0. My TSH was 1.1 and I had severe Hashimotos - lots of Antibodies but a normal TSH.

http://www.stopthethyroidmadness.com/hashimotos/

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Guest Doll
I told her that I thought that I had just maxed out my ass :P , seriously, you need to be tested for polycystic ovary and you need to have a fasting insulin level done.

:D:D:D

That is some good advice because PCO is considered to be pre-diabetes. We all know that we have a higher chance of developing another auto immune disease.

PCOS is related to insulin resistance and TYPE 2 diabetes. Type 2 diabetes (the common form related to diet and obesity) is NOT an autoimmune disease.

Type 1 diabetes is not insulin resistance, but rather the complete destruction of the insulin making cells as a result of a misguided immune attack. Type 1 diabetes (the rare severe kind that always requires insulin and is not preventable) is genetically related to Celiac Disease.

Type 2 diabetes is NOT related to Celiac Disease.

OK, off my soapbox now.... :P

I also want to point out that gluten free foods are often high in carbs, low in fibre, and can lead to weight gain and insulin resistance in some. Trust me, I have to count carbs to match to my insulin dose as a Type 1 diabetic, and I need much more insulin to cover a gluten-free bagel than I ever did for a wheat based one.

Also, Paxil and other antidepressants are linked to increased appetite and weight gain. You need to make sure that you really are sticking to a healthy diet and exercising, as well as watching portion sizes.

Also, if you had a hysterectomy, that can be a direct cause for your "male pattern" (abdominal) weight gain. Either way, if you have insulin resistance, you need to follow a Type 2 diabetes meal plan.

I guess that's one thing that I hate about the whole "Dangerous Grains"/Enterolab thingy...if that book is telling people that their "diabetes" was/is caused by gluten, that is completely a ploy to appeal to the 18 million Americans with Type 2 diabetes who will support and buy these books and tests. The reason why Type 2 diabetes is an epidemic because we are fat, eat crap, and don't exercise, period. Nobody want to accept their role in the disease, but that is the truth. We all want a scapegoat. People were eating wheat bread in the 1920's, but they were active. Type 2 diabetes was not a problem then, was it? Sure, it's true that a gluten free diet will help you lose weight because it cuts out most junk food, but that doesn't mean that gluten itself causes weight gain any more than french fries and ice cream. Most people on the gluten-free diet WILL feel better, simply because they were eating unhealthily before.

I guess what upsets me is that it shadows the TRUE medical facts, which is that Type 1 diabetes (an autoimmune disease) is the only form of diabetes linked with Celiac Disease. However, Type 1 diabetes is less than 10% of all diabetics, and cannot be prevented at this time no matter what you read (a gluten-free diet *may* DELAY its onset in *some* cases), so it's not much of a money grab.

Just because autoimmune diseases share genetic links (including Celiac Disease), it doesn't mean anything more than exactly that. Of course Celiac is more common in people with autoimmune diseases, because all of those disease share genetic overlap! When it is claimed that people "cured" their MS simply by going off gluten, it was because they never had MS to begin with! Most likely they had *Celiac Disease* manifesting neurologically. The scientific data is simply not there to back up these claims.

I don't want to be offensive, I actually have no problem with Dr.Fine, the DG authors, etc. just that I hate it when people are mislead by "facts" that are misleading or unproven. :rolleyes:

Ok, REALLY off my soapbox now, thank you for letting me vent. It is very frustrating to have Type 1 diabetes and deal with all the misinformation out there!

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The TSH range is .3-3. If this is not the range your doc has than he is out of date. Anything over 2 is suspect. You absolutely have to have you thyroid peroxidase antibodies done. These should be under 20. They will tell you if you have Hashimotos hypothryoidism (autoimmune and common in celiacs). I have this. All my tests were normal, except this one - 799!! The TSH is so innacurate. What might be a good range for one is not for another. Please get checked. Most endos are useless, so I might stear clear. Check out these two websites- stopthethyroidmadness.com and dr.lowe.com. The last site is the site of my docs who helped me. They are so knowledgeable. Do not allow the doc to put you on synthroid. You should take Armour thyroid. You will read about this on these sites.

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