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VERY high TSH - Interested in range information
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VERY high TSH - Interested in range information

I am having trouble finding out range information on the net regarding TSH levels.  I have taken synthoid for several years and occasionally have to adjust the dosage.  I know what a level TSH is but at one point had a level of 32.5 - which was treated by adjusting the dosage.  However, due to recent HORRIBLE symptons, knew I needed to have it checked again (3 months earlier than my scheduled check).  It was at 85.8 which scares me to death after doing what little research I have.  I have been looking for ranges and what effects they may have on me at certain ranges (other than the obvious ones I have been feeling).  Last, how high can a TSH be and how close am I to it?
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New range as of 2003 is 0.3-3.04
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Also, I think a TSH can go over 600 (off the charts).  Still, your TSH is very high (I was miserable at 6.43 so I don't even know how you're doing it).

What has your treatment been?  Synthroid/dosage?

Best wishes.
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Avatar_f_tn
TSH of 1.0 is where most doctors like TSH and patients feel best.

However one shoe does not fit all.  A lot of Hypos feel best with TSH on the high side of Labs normal reference range or middle of high range.  Some Hypers like TSH on the low side of Labs reference range or middle low. Anywhere within the Labs reference range where you feel your best is acceptable.

I would say getting TSH  at 1.0 would be a good starting point.

Good Luck!
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Thank you for your comments.  However, I know what the lower ranges are supposed to be... and I know how I felt and what symptoms kicked in when I was at 32. a few years ago.  I was just surprised when I was told it was 85.8 this week.  Explains a LOT about how I have been feeling and the extreme abscent mindedness.  I just wasn't sure how high it could get before the possibility of cardiac problems or potential coma kicked in.  I didn't even know it could get that bad to cause those problems. ...so I just wasn't sure how big that number could get.  I see where someone said it could get as high as 600.  I can't even imagine.  

My physician just increased my dosage to .200 and I will go back for labs in 6 weeks.  After that I believe he will refer me to an Endo.

As far as how I'm doing it... one day at a time!  I've just warned everyone I may be a little "off" and to bear with me :)
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I'm sorry.. yes, I am taking synthroid.  I put my dosage but not what I was taking!
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I have read of a TSH 400 so I believe 600. At 300 or higher the thyroid should be completely non-functioning, therefore I'd recommend not being at those levels for very long without health consequences.  Nor would I'd recommend being too much higher than you Labs reference range. We are not all alike, therefore will suffer health consequences at different thyroid levels and effect (symptoms).  I also read people going into a near coma right on a forum, right then and there, with members urging them to go to ER, NOW! Although I don't know what levels were.  But do we dare take the chance with our health, regardless. As long as you and doctor are staying on top of your situation, i.e., treating accordingly, the serious, long lasting side effect should not occur, hopefully, keeping in mind that we are not all alike. Minor symptoms are dealt with as levels are corrected. Without knowing your F/Ts, with your TSH going from  32.5 to 85.8 tells me your thyroid is slowly dying off.  But I am not a doctor, just my opinion.  
Make sure the Endo you will be going to deals a lot in thyroid issues per year, if not, you might be wasting your time.  Most of us with experience with Endos, find that they deal mostly in diabetes and very little thyroid.  Thyroid specialist/thyroidologest is best.

Good Luck with you next Labs.









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Thanks so much.  I did want to clarify... the jump from 32. to 85.8 wasn't in one sweep.  I was at 0.6... then crept up to 32. and have been a steady 0.6 for the last 4 years.  This 85.8 snuck up on me.  I just don't want it to do permenant damage!  Thank you also for the fyi on Endo's.  I will be sure to ask if it comes to that.  I DEFINITELY don't want someone who doesn't know this issue well or specialize in it!  ...and a third thanks (ha) for the 400 to 600 numbers... that makes me feel better about my 85.  Appreciate it!
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I have a TSH of 10. It was normal, must be stress related. Prescribed 100mcg Snythroid, was on .088 previously.  I took the generic .  Does anyone take their prescriptions am or pm and what do you think is best.  I normally take my meds in the morning.

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In the morning, on an empty stomach and an hour before eating :)
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I just got a call from my doctor that they want to see me.  My TSH is 10.59.  Does this mean it is 1059 or what?  I'm confused.  I've had hypothyroidism for a long time and my dosage of Synthroid changes now and then but I don't really feel like I have a lot of symptoms.  I haven't been extra tired, haven't been gaining weights.  I have been moody and it hasn't taken much to make me cry lately but that's about it.  Any thoughts?
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Well Mommy?

Your TSH states just like you read it, 10.25 in which means 10.25, hypo.  Being moody and crying is classical of hypo symptoms.  It was with me and with no other symptoms with my TSH at 29.  You need another med. dose adjustment if you haven't already had one in the last 2 months from last Labs.

We all don't experience all the symptoms nor the same symptoms.  And if we are very lucky, some of us will experience very few symptoms.

Good Luck - Good Health!
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I have been reading your forum today, this comforting to be able to see that others are experiencing the same issues as myself.  My last TSH levels were at 57.062 High.  As you were saying, different people manifest different symptoms with Grave's Disease.  There is just not enough known about The Thryroid or Grave's disease!  However, my thryroid is being removed soon.  I meet with my Surgeon tomorrow to find out when the surgery will take place.  

The question that bothers me is, I have been told that as long as I am not hyperthryoid, The anxiety I am experiencing is not related to the Grave's Disease.  What do you think?  Every morning and every evening the anxiety is driving me up a wall.  This of course causes Insomnia even while taking anxiety medication.  It just doesn't do enough to help.  Any suggestions?

Very Anxious in Tucson, Arizona
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First Graves' does not come with high TSH unless you were RAI or surgerically treated.  If not you probably have hypo with possible Hashi. So why the surgery, thyroid cancer or nodule?

Different degrees of mental can come with thyroid disease including Anxiety or exacerbate already existing ones.  Whether hyper or hypo.   It's not the Graves' or Hashi that we are treated for, but rather the hyper or hypo side of the two diseases.

You might try some sleeping pills for the insomnia - over the counter or prescription, which ever works.  Anxiety meds. and/or antidepressants are known to cause insomnia or make existing problem worse.

Sorry I am lost when you refer to Graves' with a high TSH without treatment.

Good luck with the surgeon.

GL
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I am sorry if I didn't provide enough information.  I am being treated for Grave's disease for the past year and experiencing symptoms for the last 7 years.  Since I have been on the medication, I have gone from Hyperthyroid to Hypothyroid like a rollercoaster ride.  My question is, Does Anxiety come with being Hypothryoidism also?  My doctor has told me that since I am not hyperthyroid the anxiety is more likely to be caused by something else.

Thank you for your patience!

Very Anxious in Tucson Arizona
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I don't understand why your TSH level was left to get so high.  Are you not getting checked for levels on a regular bases?  I had RAI going on 11 years and I have been going for test every three months, like clock work - due to my levels widely fluctuating.

I think its a possible in both.  However you have Graves' therefore dominant hyperthyroid.  When levels go to hypo you are not really truly hypo just your levels.  So you will still feel the hyper symptoms/anxiety even when levels show hypo.  I just got back today from doctors and my levels. My TSH got out of control with TSH of 7.52 and I still felt hyper, and right then and there in the doctors office. I graduated from antidepressants to anxiety meds. on a as need bases, which works for me if I am true to myself and symptoms and what is going on with me at the moment or even what might happen hours from them. Even when  levels show hypo.

Another way to put it is, once we are Graves' we are always Graves', even if we go hypo (which should be for a short time due to med. correcting it) - there is no cure or treatment for Graves'.  Its the hyper side/symptoms that is treated and hopefully curable.  BUT, Graves' Disease comes with its own symptoms, anxiety/depression for example.  As well as the immune system has its general of offness (illness).  And it the immune system the caused the Graves' in the first place.

I don't know if this explains enough to answer your question.

GL
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Hi again, They are checking my TSH, T3 ad T4 every 8 weeks.  My symptoms where horrible when the TSH was at 57.062 H.  I actually was making arrangements for my personal effects as I didn't think I would be waking up.  The fatigue was overwhelming.  

I had moved to Florida to help my sister who was very ill in November of last year.  I was told by my previous doctor here in AZ that my Grave's may go into remission since I responded quickly to the meds, its rare but possible.  After being in Florida for a about 6 weeks, the symptoms continued and escalated.  I saw a specialist there and was told my best option was surgery.   The RAI can cause the eye problem to manifest and I have enlarged optic cups on both eyes and do not want to make the problem worse.  My blood levels were checked and my TSH and the others were out of range to the hyper side again so they put me back on the Methimazole.  Being new to having Grave's, I was not told by the Florida doctors to have it monitored often, they barely volunteer any info at all.  I feel now this is out rageous!  Illnesses of any nature should come with a fact sheet so there is a level of understanding.

However, I met with the surgeon yesterday and he has scheduled my surgery for Friday the 13th.  Can you believe that?  I am not necessarily supersticious, but you know.  I asked the surgeon about the anxiety issue, and he feels that the anxiety can be present with either hypo or hyperthyroid also.  Not all people manifest the same symptoms as others with Grave's disease.  I have been taking anxiety medication for the last year at bedtime, so it only helps at night to help with sleep.

Thank you so much for this forum, I know it gives comfort to those that are trying to understand more about their illness.

Have a wonderfuld day dear lady,

Anxious in Tucson, AZ
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I was diagnosed with hyperthyroidism when I was 17. I was given medicine, two pills three times a day but I still continued to have symptoms. I am now 18 and my dosage has been changed. Now its two pills in the morning and another pill to help with my heart rate. It works alright in the beginning of the day but by the end of my day I'm tired to death and my heart beats too fast once more. I sweat and I'm still losing way too much weight despite what I eat.The weight loss scares me most because I dont have much energy anymore. What's wrong with my dosage? Before I took 150 mg and it didnt work. Now I'm taking 20mg and it works but not for very long. Help!


Liani Rangel
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I'm new to this.  My TSH is at 22.  My only symptom is that I have gained 14 lbs in the past 6 months.  I work out 1-2 hours a day and keep my caloric intake under 1800 calories.  I should at least maintain my weight.  I'm upset.  Any thoughts would be most helpful.  I'm taking 150 mg of Levoxl.  Will this control it?  Help!
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Sorry it took me so long to respond to your post.  There are so many non issue post that quickly pushes issue post down the line to the next page, therefore very easy to miss the issued ones.

What medication are you taking?  Sound to me like ATDs but when you stated 150 mg sounds like thyroid hormone pills, which you shouldn't be taking without thyroid treatment when hyperthyroid. If you are taking ATDs, they might not be working for you and it might be time to question doctor about another form of treatment.
If you are losing weight you need another form of treatment for sure. I did RAI for my thyroid  weight loss issue and it corrected the weight loss. I was weighting under a 100 lbs. and still losing by the time of my RAI.

If you are still losing weight especially at a fast rate you need to do something else before the weight loss makes you sick and your system starts shutting down.

Discuss your issue with your doctor and come up with a better health plan.

Good Luck!
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Weight is an issue for just about all of us, thyroid or not.  Meds. nor levels do not effect weight, unless very extreme levels. I have read for hypo that keeping TSH at between 1 and 2 helps most hypos with their weight. This is an  individual issue, so might not work for all. Have your levels tested and med. adjusted accordingly until you reach a stable TSH of between 1 and 2.  Testing no sooner than 6 weeks or longer than 12 weeks after each med. dose change.
Along with proper diet that we can live with probably for life, exercise, good nutrition and a healthy life style is the best that we can do. Its up to nature and our system after that.

Good Luck!
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I have had half my thyroid removed due to a nodule, and have been taking thyroid meds for 8 years. I have felt tired a lot but lately more so. I had blood work done a couple weeks ago and my results are
T4 7.7
T3 29
free thyroxine index 2.2
Thought that the thyroid meds could be raised. I take generic synthroid 125mcg tab
Someone said to take in morning on an empty stomach so started that and still don't see a change in energy level. Would that take a while to see results? Seems like I could sleep all day and all night.
My doctor said thyroid levels were normal and to just live with it. So thats where I am now.
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Thank you so much for taking the time to respond.  My natural weight after 2 children is 118.  To go to 132 in months is frusterating.  It's hard to tall people my story because they think that is a great weight.  Not to me though.  Thanks again.
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I started the Levoxyl yesterday.  When will I see results?  Thanks, Kim
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It's very frustrating when your TSH levels are high. Mine is 199. I don't feel well at all. I can't even walk up the stairs without running out of breath. I feel tingling all over my body. My muscles hurt, I can't remember my day. My husbands thinks I do remember. I wonder  if people think I am just faking. But heck if I am. I feel really horrible. I feel like I forgot everything. My throat feels like a balloon. I am also having a hard time writing this. How long does the medicine take? I was on the synthroid before for this. Then they stop giving it to me. Now I am back on and was told I could have had this all my life. They also said I had meniere's disease but I knew that was it. I swear if doctors would do the right testing we would all be better. I have been now gaining a pound about every 5 days. That is scary. I am worried. Should I be??? ~Bri
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They also said I had meniere's disease but I knew that was it.<<<< I meant wasn't it. Sorry all.
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I see that I am not the only one with troubles.  My TSH has gone from .08 in early August to 32.5 right now.  I feel terrible.  Sometimes I feel like my head or heart are going to explode.  I have a wonderful doctor that never has the time to see me because he is so booked up.  He has treated my thyroid condition like the common cold.  I have felt like I was dying for the last two months.  I am trying to get in to see the endocrinologist but this is a small town and it is hard.  Please pray for me.  

Liz
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My TSH has been steadily rising for the past 2 years. Over the past 6 months it has risen to about 11.2. My T3/T4 values seem to be constantly within the "normal" range though. Obviously this is "hypo". I don't take any medication because the last time they gave me T4, even at the smallest dosage, within days my heart went f*cking crazy ESPECIALLY during the night causing me to wake up and do ANYTHING to try and relax. The real problem though is, that even though it's hypo I supposedly have, my heart rate is abnormal all day but considerably more so during evening/night hours and right when I wake up in the morning.

Its confusing the hell out of me. Could only the abnormal TSH levels be affecting the way my heart pumps? They said they found a murmur as well but since there are no real doctors in this retched country, i'm seeking help online or wherever else I can! I've lost almost all faith in doctors and believe it or not, I feel better after self-medicating for the past 6 months. Everything seems to be going back to normal with my blood-tests with MY choice of medications. Everything EXCEPT my TSH levels. They seem to be rising uncontrollably and I'm starting to feel the symptoms again like 6mo ago. The thing is I'm deathly afraid to go back on any kind of hormone for fear of making my already unstable heart-rate worse!

I'm 29 and don't know what to do, every useless doctor in Greece contradicts the previous one I took advice from. NO more illiterate fake doctors! If there are Thyroid experts HERE, please help! any advise is better then what I'm getting (or ever got) from doctors here!
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i did  total thyroidectomy on the 6th Sept 07. I had a goitre that caused all kinds of symptoms however i was diagnosed as euthyroid 9 years ago because my blood levels were always normal but clinically i also showed signs of hyperthyroidism. Ver confusing!
Now i am taking 100 mg of levothyrosine. I did my first lab work after surgery and my TSH is 22 high.
T4and T3 wer normal.
why is this so when my las work would have been normal all the time before surgery??

Kindly  waiting on a response
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I was diagnosed w/ hypo about 13 years ago.  Synthroid only made me feel worse, ie: weight gain, loss of hair etc.  I have not been taking meds for about 4 years.  Recently, I have been experiencing all of the symptoms of hyper, although my TSH is at 25.  Extreme rapid heart beat, shakes, sweats, nausea, ect.  It was so bad I took myself to the emergency room.  They put me on anxiety meds, which helped some, but am experiencing the symptoms EVERY DAY, ALL DAY!!  Feel like I am going insane!!  Is it possible to be hyperthyroid even though my TSH levels are at 25?  It is difficult to type this because I am so shaky!!  This blog is the first thing I have found where someone else might be experiencing my same symptoms.  Need help desperately!!
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314892_tn?1264627503
Post this on a new thread and someone will be along to help you.
This one was started so long ago- you may not get a reply.
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I am trying to get pregnant and I have just had a blood test and my TSH is 11.2 (hypo). I was always against medication and wanted to follow natural methods as far as possible. Now should I take medication? But then after reading more and more on it, the medications might cause me to be hyper. I am confused, what should I do?
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Post this under a new thread and you may get more of a response.
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In the spirit of this thread's subject, I want to submit that my six-year-old's TSH result was 586.8. Yes, six years old. Yes, 586.8. The local children's hospital cleared their schedule for him. We were told, start synthroid immediately... all effects treatable and reversible. For what it's worth.
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314892_tn?1264627503
WOW!!

What symptoms did he have?

I wish him the best for a speedy recovery.

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Many symptoms... that individually looked like nothing, but together were frightening. In order of most to least noticeable: pale skin, weak appetite, no interest in physical activity, inability to concentrate, and constipation. However, the Big One that the doctor noticed was a deceleration on his growth chart. He hadn't grown more than a couple centimeters in a year's time. This by itself would be fine if that was his normal rate of growth, but he dropped from the 25 percentile curve to the 1 percentile curve. Doc ordered blood work and a bone scan. Blood work was crazy, as I noted in last post. Bone scan showed 3.5 years. Although acquired hypothyroidism is uncommon in children, my husband had the exact same experience as a youngster. The 'experts' working with my son suspect some kind of gene mutation and seem excited about it. Hey... as long as I have the experts, right? They say a synthroid regimen at this stage should reverse all ill effects (his BP was 90/49 and his heart had slowed), that he should experience a "catch-up" growth spurt and regain his energy. When I explained to him his condition and the medicine, he said, "Mommy... does this mean I'll finally stop forgetting things?" ... a symptom I didn't even know about.

By the way, I had him in for his physical when I found out all of this. I mentioned, somewhat casually, his symptoms to the doctor. I'm kicking myself for not going sooner, but I really thought it was a vitamin deficiency or something.
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Oh yeah - I forgot the most obvious symptom. His lips were chapped ALL THE TIME. I went through so much vaseline and chapstick... and they remained chapped through warm and cold weather. Never saw him chew his lips and he wasn't really breathing through his mouth much. Just want to mention it in case it helps someone else...
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314892_tn?1264627503
"Mommy... does this mean I'll finally stop forgetting things?" ... a symptom I didn't even know about.

That must have been so hard for you to hear. I have 2 kids of my own. That breaks my heart!

Don't second guess yourself. (though I would do the same). Hindsight is 20/20.

How long had he been on meds and how is he doing?
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It did break my heart. Hindsight is 20/20. I would bet he started going downhill in the fall, 2007. He started his meds this past Tuesday, actually, March 11. It's a wait-and-see right now. The endo said expect changes in two weeks, but I'm telling you, he SEEMS perkier. Maybe it's all the extra attention and love he's getting :)
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I noticed a difference in 4 days, but 8 weeks along was when I really felt better. That was after a couple of dose changes.
I started in Sept. Still adjusting my Synthroid to get a lower TSH.

It will be great for your boy to start feeling better. You sound like a great mom. Hang in there.
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I just got a call from the childrens hospital. The day he was diagnosed he got additional blood work done (four days after the blood work that reported 586 TSH). THIS blood work showed a TSH of 1000. He definitely has an acute case. Sounds like we got him there just in time. Mommy-guilt at this point isn't even coming into play. The only emotion I feel right now is pure gratitude. Yesterday when I picked him up he ran into my arms, talked and laughed non-stop. He was ornery at dinner last night... just like a real kid :) I'm getting my little boy back. I'll keep you updated.
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ahhh my heart goes out to you and your little one...i have hypo so i know some of what he was probably going thru...mine was 57.49 not near as high as he is but let me tell you it kicks my butt.....god bless you and your little one ...take care.....deb
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Give him a huge hug from all of us.

When my youngest was that age, his kidneys went haywire. We took him to the doctor's office, but they wrote it off as a sinus infection. He gained ~15 pounds in six weeks - he was 5 1/2 years old! - and they still didn't pick up on it. Wasn't until he had swelled up so much that his belly button practically popped out did we finally get someone to pay attention. Then they rushed him by ambulance from our local hospital to Johns Hopkins' pediatric ER. Talk about heart-wrenching!

It's been 6 years this month and he is doing great. We still test him & he still has minor issues, but nothing like what he went through before. It's absolutely amazing how resilient kids' bodies are.

Keep smiling. Know that no matter how hard it seems, you are not alone. And write down everything ... that short-term memory loss affects stressed-out parents too!
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Thank you for your kind thoughts. I'm starting to feel better. He seems to have turned around somewhat. He's getting a little obnoxious with his "celebrity". The girls in his class have taken to "mothering" him like he's an injured baby animal. The grandmoms are fighting over who gets to have him visit. He got special attention from his school's principal. He got to do a "presentation" to his class on hypothyroid and the class gave him a group hug. Pretty endearing for a kindergarten class, I thought. I feel very blessed and thankful. I called the childrens hospital and managed to blubber out some heartfelt gratitude.

So many things make sense now. My husband and I would constantly be complimented on our parenting skills. "He's SO well behaved" people would say (after he'd sit quietly through a church service, for example). He was just mellow, I thought, and yet the whole time he was sick.

Last night we were out at a fancy restaurant for some family birthdays and he was banging a glass with a spoon. "QUIT IT" I said. He would put down the spoon, wait a bit, and then he started it up again. "WHAT DID I JUST TELL YOU?" and it continued... Half of it was him knowing he scared us to death and he could get away with some infractions. The other half was... he was being a REAL KID. It was so encouraging.

WorriedinMD, your experience sounds so traumatic. I don't know if I could have managed to be calm. I'm a PA resident, but not far from Johns Hopkins. Their reputation is untouchable. My son ended up at AI Dupont in Delaware. They did a great job too.
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I have had hypothyroidism for over 15 years, pretty much managed well by synthroid, etc.  Occasionally I'll get spikes of TSH and so forth, but following feeling crappy for several weeks I got my levels checked and my TSH is over 112.  My doc is checking thyroid antibodies to see what they reveal.  Has anyone had such an episode, and has anyone been diagnosed with a pituitary tumor following dealing with thyroid symptoms?

Many thanks, Gina
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I was trying to research this myself.  My TSH was 141 as of last week.  I have found all the info on the "normal" ranges, but it doesn't seem like there's much research on the different levels of TSH.  Maybe after 4 hypo is hypo... I don't know.  If you find anything, please come back and post it.
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My wife's TSH is high- 18. And the doctor advised us to meet a specialist who treats thyroid disorders.
She is 25 years and we were thinking of planning for a kid now and this result came as a shocking for her. Her mom got the throid disorder in her 40's.
My questions:
1. Is this curable permanently?
2. My wife is worried about taking medication throughout her life?
3. My wife is worried if this will impact if she gets pregnant.
4. Any other side effects in going for a Thyroid replacement therapy?

We got married in may 2007 and we both got a long way to go.
And we are worried now considering her age.

Any advise would really help.
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I'm grateful ya'll are out there dealing with the same questions I have.  I now know I'm not alone.  I just got test results TSH of 250.  My symptom is I can't seem to stay consious.  I don't know what to think.  The doctor gave me a sample of synthroid 75.  I've taken 3 so far without any improvement.
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It takes about a week to start to feel any different and then 6 weeks to fully achieve what the dosage will do.  TSH of 250 is huge.  When will the dr. ck your lab work?

C~
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I am new to this site and have read your comments with interest.  I had a thyroid blood test in February this year and became ill in early April.  I became very ill very quickly - still going to work, but like a Zombie.  I went to see my doctor who was dismissive and said it was all part of the unidentified auto immune disorder that consultants have been trying to work out what it is for the last 12 months.

Well it seems between Feb and May this year my thyroid died!  TSH over 100 from normal in 8 weeks, no wonder I felt so ill.  On second week of thyroid replacement therapy and feeling much better.

Just need to find out if my thyroid was causing my longer term problems or if an auto immune disease has attacked and killed my thyroid...... and I am sure the answer will take forever! Until then - hair has all fallen out again and skin rash is back. so from a hairless and spotty english friend - good luck to you all!!

Kim

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My TSH was at 139 two weeks ago and they still have me off of my meds due to testing. So, I have no clue how high it is right now. I feel real bad but I'm still able to work, go to college full time and chase after a very active 1 year old. Somehow....
So, I hope that makes you feel better that it can be this high and you can still function.. I've also been on the LID so I'm not only tired and tingley..I'm soooo hungry too..The only think that knocked me down for a couple days was the low dose of radio iodine that they gave me monday for my scans..wow..that was crazy how weak I was from that. When I was pregnant my TSH was at 96. I was able to bring it down to a 7 within 8 months with my meds being increased to 300 mcg.
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my tsh has gone from 12 to 52 in 6 weks have been so depressed and crying. Hungry all the time, bad skin, bad hair when will i start to feel better Dr. aised my synthroid to 200 last week.
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Hi, I am so grateful to have found this board. I am seeing an Edo a year after my first ambulance ride. I just had my CT. My TSH is 4.3 and (t4 is .85 t3 is 1.4= normal)

It started with intense burning, like I had my back, neck, and ears waxed. Sometimes it feels like I am exhaling super heated air.  Then a throbbing throat in the evenings that lasted until I fell sleep each night. Then one day my blood pressure went to 180/98 with 180 pulse. They said panic attack. These lasted 6 hours plus. I was 34 with no history of panic. Then here comes the “ accept your mental” path and baby does of Xanex. Another ambulance trip with similar numbers, again lasting hours scored me a beta blocker. On the Beta blocker the burning persisted. How I managed the pain I have no clue.

Then my world changed. My pulse would kick up out of the blue, for  no reason usually around dinner time. My arm was going numb for weeks, left lip numb and I could not even feel the left side of my tongue.

I did the mediation, took the mental meds but my body reacted violently as in with in minutes. So we stuck with the Xanex.

A year later I get a few humble apologies from Drs and an Edo referral. I go as long as 11 days attack free. The worst ones are at night listing about 1.5 hours. I am on procardia which was helping with the burring and heart pain, but it is coming back.

After reading this board I want to know if anyone has burning and also if pheochromocytoma has been ruled out. Creepy is that 1 out of 300 only come up pos on labs for Pheo. It is a tumor on your adrenal gland. Has the same symptoms of panic attacks.

I is a daily battle, each day around 2 it wants to ramp up and then it passes. Then dinner time around 5-630, My heart just chugs, gets up to 157 or so wich is no fun. It passes and I have rescue meds.

Also I am a size zero 5 ft 2 with  trucker gut. I look like I HAVE CANCER IF THAT MAKES SENSE. My arms arms are thin and I just look “ sick”

I admire all of you and appreciate the posts.

Also watermellon and  fresh crab seems to help. I found this tip on an Australian board and it is a god send. You need fresh, local grown watermelon. If anyone knows why it works please share.  Also avoiding tyramine foods. it’s the MAOI diet but I am not on MAOIS. It seems to keep them at bay. I feel it want to start up but if I do not eat it stays mild and I can function. I eat at night after my evening meds.

If anyone is suffering it is worth a shot. My body is emotional while my mind is calm, it is just weird.



Stay Strong, Joy




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tell me more about your skin rash... I have hypo. Have been taking Synthroid and/or Levoxyl for years.  just started breaking out in horrible rash all over trunk of body, extending down my arms.  Blood test recently came back with 50 TSH level. Dr switching meds and dosege.  I thought my swimming pool was to blame!
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I suffer from SLE Lupus and have recently been diagnosed with a blood TSH of 154.  My GP was
very concerned about the TSH number and put me on this Synthoid type medication a couple
weeks ago.  I still feel very lethargic and the chest pains seem to becoming more intense and
more often.  I have been to the ER twice, feel kind of stupid, my GP has increased my dosage to
200 mg. in the morning.  Should I be doing anything else?  He also has me getting my blood levels
getting checked every week.  Please get back to me if any one else has any thoughts or FACTS.
Jewell911
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I suffer from Lupus as well and just had my throid removed 9-4-08 due to thyroid cancer, just started the meds and feel weird is the best way to explain it, however my Lupus so far seems better, my TSH as of today is 9.8.  Wonder if anyone had to do a low iodine diet before iodine radiation? Having a hard time figuring aout what I can eat?
Thanks
Debbie
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I'm 18 years old and I was diagnosed with hypothyroidism when I was 13 (7th grade).  The doctors told me that I was in very bad shape and they had not seen such a horrible case. Supposedly I had the symptoms since 3rd grade but my family was completely unaware of the disease and simply thought I was going through puberty.  When my TSH levels were tested I was told the range was between 0.5-5.0.  When I received my test results back that evening I was told to immediately report to the emergency room because my TSH level was 896....with no decimal.  I do not understand this. Could someone please explain. I do not understand why mine was so high when everyone else says 100-600 is high. Does anyone know alot about this?

Thank you. and Goodluck to Everyone!!
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I am also hypothyroid, have been since the birth of my second child.  I experience symptoms with the slighest change in my thyroid function.  Recently I have felt my Endo was not doing a good job of reading my labs and monitoring my thyroid so I have been doing some research of my own.  I would highly recommend two books by David Brownstein, M.D., "Iodine:  Why you need it, why you can't live without it" and "Overcoming thyroid disorders".  These have both been real eye openers and have urged me to seek help for my hypothyroidism in other places.  Just a suggestion...
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i had my TSH lvls checks yest nd i had values of 437 .. i guess its really high . i never knew i had this high lvls cause i didnt notice much of a difference other than tiredness and shivering and diminishing body growth. the doc said prob has been there for quiet a while . probably 2 yrs. he said th e treatment would be life long and gav me some meds 'Thyronorm' 50mcg nd 100mcg . told me to keep at 50mcg for 15 days nd then start with 100mcg. im scared to death nw . tel me is this gonna get my TSH balanced inbetween 0.5-5
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Just got the word from the doctor, my TSH is 75.1 but the weird thing is that I really don't feel any different. I'm 30 years old and besides dealing with everyday stress I can't say that I feel any symptoms that everyone discribes.  They put me on .025mg of synthroid untill my follow up a month away and I'm wondering if in that month I'm going to start feeling worse b/c of the meds?
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I was diagnosed with hyperthyroidism(graves disease) and I got a radioactive treatment which was 1 pill that I had to swallow and within a month it would kill my thyroid completly.. And it did! My tsh is now 50 and now I will starting on a 125 dose of synthroid but before starting synthroid I have to take some other medication for 2 weeks cause 50 is extremely high... I dont know the name of the drug the specialist put me on be cause they called it in straight to the pharmacy.. So I have to pick it up today.. But I suggest everyone that has an out if control thyroid to see the specialist endocrinologist :)
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Am new here just looking for answers...my tsh was just tested last night in the ER...135.89. I take 225 micrograms of levothyroxine. Have had too many sypmtoms to list. Feel horible ALL the time. My skin is in  aweful shape, am covered head to toe with an itchy rash and sleep is the only thing I like to do. Is this gonna kill me???  I have taken my hypothyroidism too lightly I suppose but I I am beginning to suspect that it may very well be the root cause of all my symptoms including my mental health problems. Oddly enough I am bipolar with much more moodswings toward mania than any other thing therefore my psychiatric diagnosis is bipolar 1.  I am on an extremely high dose of levothyroxine. What else can be done to help improve my health? I have had gastric bypass surgery and wonder too if absortion of the levo is a problem..ack!! what to do?
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The very first thing you need to do is get the results for your FT3 and FT4 tests.  T3 and T4 are the actual thyroid hormones and much more important than TSH in determining thyroid status and altering meds dosage.

There are a number of things that might be affecting your meds, but without FT3 and FT4, it's impossible to know.  Your doctor is required to give you results (with reference ranges) upon request.  If he hasn't been running these tests, you need them immediately.  If he has, please post them (with ranges) and members will help you sort it all out.

You shouldn't delay with a TSH of 135.
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Generally,  how soon after starting synthroid should one re-test their TSH level???  Is 90 days too long?  Anyone?
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Six to 8 weeks is more normal.  Why wait any longer to determine if you need your meds increased to relieve symptoms?
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When you've just started meds and haven't reached a stable dose (or anytime your dose isn't stable), you should have labs 4-5 weeks after the change and see your doctor about a week later.

Also, make sure your doctor is testing FT3 and FT4, the asctual thyroid hormones.  These are much more important than TSH, which is a pituitary hormone.  Diagnosis and treatment should never be based on TSH alone.

90 days is too long, especially if your symptoms persist which would indicate a meds adjustment is in order.
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I just got told by my doc that my levels are a TSH of 600. I had a thyroidectomy back in '04 when I was diagnosed with Thyroid Cancer. I have been on Synthroid since then so this is quite a shock. I don't feel any different with the exception of being tired, which I chalked up to being the normal stress of a senior year of college.

What are the other possible symptoms of a TSH this high?
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What are your FT3 and FT4 levels and their reference ranges?

How long had it been since your last labwoork before the TSH of 600?

TSH abnormalities can be the result of pituitary and/or hypothalmus issues, etc.
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I have no idea about my FT3 and FT4 levels, she didn't mention that in the phone call (it is after hours and I live 3 hours from the office).

The last time I had lab work was last January when I was with my previous Endocrinologist (I have switched due to personality difference and just not liking him). I am pretty familiar with the common symptoms one can have such as dry skin and excessive acne but I haven't had either of those or any other symptoms. Like I said previously I am excessively tired but I still go about my normal day and I chalked it up to being a part of college life.

This just kind of blindsided me. I am five years out survivor and it just kind of feels like a fall back to when I wasn't on any meds and had no thyroid...only apparently these levels are even worse.
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I'd call in the morning and ask for FT3 and FT4 results and their reference ranges.  If these tests weren't done, I'd have them done right away and repeat TSH at the same time.  I would expect you to be absolutely miserable and barely able to get out of bed with a TSH of 600 if that, indeed, is actually reflecting your FT3 and FT4 levels.

What meds are you currently on, and were any changes made to meds back in January?  I'm assuming your TSH was in range in January???
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I am on 250mg's and my meds have been the same for at least two years. This new doc has told me to take double for the next week and then go back to regular dose and I will take blood work again when I go home in three weeks for winter break.

She also told me before I even took the blood test there was the chance that I would have to do the low dose RAI again over break since I haven't done it in almost three years. But now that my TSH is at 600 I don't know if that is going to happen.
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With a TSH of 600 (if this is accurate), I would not wait three weeks to have FT3 and FT4 tested if they have not been already.  You could be getting into dangerous territory, even though your symptoms don't really support that.

I will reserve judgement on the doubling of the dose to 500 mcg until after I see your FT3 and FT4, however, that is a mega dose.

Check with your doctor tomorrow to see if FT3 and FT4 were run.  If not, don't wait three weeks.  You can get the tests run and post results here for members to comment on (results should be available the morning after blood is drawn).  Since your symptoms and TSH are at odds, it's confusing, but I still think it needs to be addressed very promptly.
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My thyroid TSH level was at 433 (yes, Four hundred and thirty-three) last year...since then I've experienced what the doctor called "bottomed-out." This occurred when I first started taking two pills a day right off the bat. They wanted to bring my levels down quickly, but instead it almost took me out of commission.

The last several months have been ok...but lately (*the last three weeks*) I've been very tired, numbness in the hands, arms, legs, and feet, extreme fatigue, no menstral cycle, shortness of breath, unfunctionable throughout the day, dizzy spells, migranes (migraines), chest pains, inability to think clearly, and insomnia have  been my daily routine.

I'm not sure if this is stress related, but at times I feel like I'm going to pass out...The most recent levels the doctor took...I was around 83...this was a few months ago.

Should I have the doctor test for another issue? They said when I began the thyroid meds I'd feel great...well, for me...it was just the opposite. I have never felt so useless or weak in all my life than I have this past year...

Do you think I should wait it out or have them test for another issue?

Shauna
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My 9 year old daughter had a TSH test run with results of 26.  Her T3 and T4 levels we were told are normal.  I don't really understand how this works.  If I am reading correctly, the TSH comes from the pituitary gland and tells the thyroid to produce more or less.  In my daughter's case I think she is considered Hypothyroid.  She has had the pale skin, tummy aches and some headaches.  We are concerned with her T3 and T4 levels being normal and her age if we should consider an MRI or CT scan to look at the pituitary.  Thoughs on this?
She started the Synthroid on Saturday and has reported no more headaches.  We are scheduled to see the endo on Feb 10th.  
Thank you for any opinions on the MRI/CT
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My daughter is also nine and was born without a thyroid gland. Do you have the freet4 and freet3 level with the lab. reference ranges for these test? Always get a copy of the lab slip! TSH is a signal from the pituitary gland that the brain needs more thyroid hormone. Freet3 and freet4 are the available thyroid hormones in the body. I don't see how these could be "normal" if the TSH is elivated this high, as this would be the signal that these are too low. Unless it is an issue with her pituitary gland???
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The results of Free T3 and Free T4 show to be within normal range, but bottom of the range.  Isn't it possible that the TSH level is high due to it working overtime in order to get the T3 and T4 to the correct levels.
The pediatrician suggested an MRI of the brain, for reasons unknown.  She has no symptoms (headaches, etc).  The endo hasn't suggested this although we don't see him until Feb 10th
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My T4 is 17 and my TSH is 5.6. I am currently on 75mg of levothyroxine, is this ok or does it need to be higher?
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I'm a little scared right now. I was diagnosed with hypo a few days ago. My first results came back at 344 and then 357. My dr has ordered an MRI of my brain. I'm so confused right now. All these websites give different info. Can anyone shed some light?
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How do you feel?  Do you have hypo symptoms?

Did your doctor test anything besides TSH?  Did he give an explanation of why he is ordering an MRI and not further thyroid tests?
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so im guessin my TSH level of 406.5 was pretty bad?
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My wife is 6 week pregnant and she's having TSH level of 35.5. Is there any complications???

Sandy
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You are being checked for a Pituitary gland tumour as this gland regulates the TSH.
It is not a big issue as I, myself found out I have a tumour which is being removed nasally (up through the nose) next week.
Mine was picked up with a CT scan.
But I knew something wasnt right for a few months now.
You will be ok...let us know how you go.

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I was talking to a psychiatrist thinking I had ADD.  He said ADD mimics hypothyroidism.  I was diagnosed in Feb. of 2009 with a TSH of 324.  I have no idea how long it has been that high.  

The psychiatrist told me it takes a long time for the brain to recover after having hypothyroidism. Has any body else heard this before?

My TSH has never been stable although it was at a level of 1.78 then it starter going back up not to a level it was before.  Recently was at 9.4 and I was feeling like I was in a fog, couldn't find the words I was looking for, gained weight and feeling tired.  

The psychiatrist told me to keep on top of the TSH test with my doctor and to have it tested every 6 weeks till it gets stable.

Is there any other advice anyone could give me?  I thought just taking the medicine and I would be better.  Any advice would be helpful.
Thanks,
Mark
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I was recently tested for hypo since I told my Dr I was having GI troubles. I felt tired only because I wasn't eating because I would have horrible GI symptoms when I ate pretty much anything. I was losing weight, not gaining. Anyway, he did a thyroid test. My TSH level was 72.4. But, I just didn't think I had hypothyroidism since I didn't really have any of the symptoms. So, four days later, I got tested again by a different Dr. (second opinion). Anyway, this time the results were TSH level of 43. Is it weird that four days later it went down so much (even though it's still obviously not normal)? I had not taken any meds to reduce it. Thoughts?
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TSH is very volatile and changes significantly even intraday.  TSH is a pituitary hormone, and its only function is as a messenger from your pituitary (master endocrine gland) to your thyroid to tell your thyroid to produce more thyroid hormones, T3 and T4 (mainly).  TSH is a very poor diagnostic of thyroid dysfunctin since many factors in the hypothalamus/pituitary/thyroid axis can affect it.  If you really want to know what your thyroid is doing and/or get your meds adjusted properly, you must test free T3 and free T4.  Make sure that they order FT3 and FT4, not just T3 and T4 or total T3 and total T4 (these are obsolete tests).  Six weeks is a reasonable interval between bloodwork, but if FT3 and FT4 are not being tested, it will be very difficult to get meds stable.

After being hypo, especially if you were for a long time, your body (brain and all) can take a long time to heal.  The time depends somewhat on the length of time your were hypo and how many symptoms you had accumulated that have to heal.

If you have no symptoms of hypo with your TSH so high, it's doubly important to test FT3 and FT4.
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Thank you for your response. So, it's not that my TSH levels are dropping normally. It's just that it's a volatile number to begin with. Shoot, I was hoping the Docs were wrong or make a mistake or something. I really don't want to be on a synthetic drug for the rest of my life. I'm a very holistic/natural person, and the idea of that just makes me cringe. Have you ever heard of anyone being able to have their levels regulate, perhaps with natural remedies or figuring out something else that may work?

Also - What do the FT3 and FT4 tell you? I know my T3 was normal. I think that's what they may have tested was just my TSH and T3. I was actually tested in Dec. 09 during my routine yearly check up (didn't have any symptoms then either, they just tested it), and my level then was 1.6. So, it was a complete surprise to me to have that number come back so high four months later (is that odd?). And I didn't realize that 72 and 43 numbers were so high for TSH. How bad is it to be unmedicated walking around with those numbers? I'd rather explore my and see what's really going on with my thyroid rather than just blindly taking meds based on my TSH level. Can other factors be at work here, like if my FT3 and FT4 come back normal, could something else be effecting my TSH level?

Thank you for your reply!! I'm just learning about all of this...never had a reason to look into this stuff before.
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Sorry, correction...they tested my TSH and T4 on Friday (4.9.10), yesterday. TSH = 43 and T4, free was 0.7 (in normal range). That's all I know.
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Yes, TSH is volatile, which is why we always emphasize the importance of FT3 and FT4.  I tend to ignore TSH unless it is supported by corresponding FT3 and FT4 numbers.

FT3 and FT4 measure the two main thyroid hormones, T3 and T4.  The "free" indicates that they are measuring the amounts of these two hormones actually availale to your body.  Total T3 and total T4 measure the total amounts in your blood, but much of that is chemically bound by protein and thus unavailable to your cells.  What's the range on your FT4?  This is lab specific and has to come from your own lab report.  If it's "in range" for your lab, it must be very close to the bottom of the range???

Just to give you some perspective on TSH - mine at diagnosis was 67, and I've seen reports on the forum of 600 and 800.  So, yes, yours is high, but it's not life-threatening, especially since you don't have symptoms.  However, that doesn't mean that you should ignore it, either.

TSH can be affected by any number of factors besides FT3 and FT4.  The TSH feedback cycle is fairly complex, and anything (mainly hypothalamus and pituitary) in that cycle can affect TSH.

You're right, you should test FT3 and FT4 before committing to meds.  You might also want to have thyroid antibodies tested (TPOab and TGab).  These are the antibodies implicated in the autoimmune disease, Hashimoto's thyroiditis (the most prevalent cause of hypo in the U.S.).

There are a couple of "temporarty" types of thyroiditis that spontaneously resolve, but they're fairly rare.  You can google DeQuervain's and silent thyroiditis if you want to read more.  However, by and large, thyroid disease is autoimmune and "permanent".  It's a lifetime commitment.

As far as meds go, there are both synthetic and "natural" (dessicated porcine thyroid) meds.  Both have advantages and disadvantages, and different people do better on one or the other.  It's a topic you want to research well, however, before choosing a course.  Dessicated has had a very bad past year - the major supplier changed formulation, which caused it to stop working for many who had been on it successfully for years.  They then flocked to other suppliers, which created a nationwide shortage.  Many of our members are still trying to recover from that.  I would caution you that if a "remedy" is not by prescription only, you want to stay away from it as there are no over-the-counter products that work.

Since your TSH looks very hypo, it's very much at odds with your symptoms (or lack thereof).  I think you should repeat TSH and FT4, add in FT3, and see what your antibodies are doing.  That will give you a much more accurate picture of thyroid function and suggest how to procede further and whether or not to begin meds.
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Thanks again for the info! I've been doing some other research too and found out that some women get this postpartum. I had a baby seven months ago, so this is definitely something I'm going to ask my Dr. about.

http://www.mythyroid.com/postpartum.html

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Yes, silent thyroiditis that I mentioned above, sometimes called subacute thyroiditis, is very frequently (almost always) postpartum.  Silent and DeQuervain's thyroiditis differ from Hashi's both in being "temporary" and in that antibodies are not elevated.  Negative TPOab and TGab rule out Hashi's in the vast majority of cases.  I believe both silent and DeQ's are also characterized by very painful thyroid area.
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I think it may help when mentioning your TSH levels etc. to add the unit of measurement, e.g. mIU/l or pmol/l etc. to ensure we're comparing apples and apples.

I have been suffering from extreme fatigue, bad memory & concentration, pounding heart, cold hands etc. and it feels like some people just think you're making it up, or stupid or lazy. They just don't get it. It's reassuring to know that there are other people also going through this, but I hope all of you get this sorted out soon, because I know it's awful & you have my sympathy :) some of you may also want to check other hormones such as cortisol etc. and it could be a good idea to get all your hormones checked. I read on about.com about this (http://thyroid.about.com/cs/testsforthyroid/a/newrange.htm) and they say patients are often prescribed anti-depressants (which can mess you up actually), and it nearly happened to me too.

Someone asked about more natural products, so I googled a bit and found this range http://www.solaltech.com/new/shop/index.php?act=viewProd&productId=115 which looks quite good, I haven't used this yet, but my doctor did tell me about it. I think it's more natural, they call it neutraceuticals.

This lady wrote a book about thyroid issues, and although she has now fled the genocide in SA and moved to Australia, her story proves that you can get over this problem and have a wonderful life. Her book can be found here: http://www.solaltech.com/new/shop/index.php?act=viewProd&productId=5189 and there's an article about her here
http://www.you.co.za/articles/Celebs/SAs-Thyroid-Lady-moves-to-Australia. She was depressed & overweight, but after this problem was corrected, she became Mrs SA 2005 :)

As far as I know, high TSH and normal T3 & T4 means you have hypothyroidism (I can't remember which of who asked about this. Just shows you about the bad memory thing, lol).

I wish you all good luck and excellent health :)
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For TSH, we use the current recommendation of the American Association of Clinical Endos - 0.3-3.0.  Many labs and doctors are still using obsolete ranges, so we ignore those and use AACE's instead.

As far as FT3 and FT4 is concerned, we really don't have to be concerned with units.  Whenever anyone reports FT3 or FT4, they have to include the reference ranges from their own lab report as these are lab specific.  Even when different labs report in the exact same units, ranges can vary from one lab to the next.  What's really important to know is where in your lab's range you fall.  Variations are due to methods and equipment.
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My Tsh is 76. something I had a rai ablation done back in feb. of this yr..I am sweating alot seems like I never sweated b4 this .. (I was treated with rai because I was hyperthyroid) But they started me on 25mcg of levothyroxine.. the a wk later my endo up'd it to 100mcg of the levo.. I've been on it for about 2 wks at 100 mcg ..They said they would retest at 2 months but Ive been having major headaches..Is that anything to worry about .. any advice new to being hypo..
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You might try posting a new question...sometimes posts on older threads like this one get kind of ignored.  You recently had RAI, and I know that thyroid hormones can remain unstable for quite a while after that.  However, hyper is not what I know best.  When you post your question, be sure to mention RAI in the headline so you will attract the attention of members who know a lot about it and have experienced it.  Good luck.
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i am so humbled reading everything posted here....my TSH was diagnosed to 149....and my endocrinologist is very supportive....main thing i want to say is, AM SO HAPPY that all the weightgain, lethargy, constipation mood changes, bad skin and hair, inability to concentrate, NONE OF IT WAS MY FAULT :) it was always just the hormones, and i put up a brave fight before being diagnosed......

forgiving myself. i thought it was just me, bad diet, something else wrong....but no, thankfullly just the hypothyroid state. just a tablet per day (like anything, like brushing ur teeth or bathing)...will keep all probs at bay now. started today morning! going to have fabulous weightloss, good skina nd hair and my life back within a month as the drug starts acting!

just thankful and humbled, and loving myself more and more now.
atleast it was never ME.
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I have been hypothyroid since i was 17. I am now 32. I had troubles in the begining with taking generic synthroid so i have had to be on name brand. Recently I got cheap b/c generics are free through my insurance. i had been on 150 for about 3 months and last week i had excruciating pain in my stomach and chest. For 6 hours i dealt with it until i ended up in the ER. After all my tests checked out the dr decided to check tsh level which was 14. she said that caused all my symptoms(2 weeks of severe diahrea with dehydration from same, difficulty breathing) and pain. Has anyone else experienced sever pain in your chest? When i was first diagnosed i exhibited the same symptoms with severe pain in my chest . I have all the other normal symptoms as well but I cant find much info on pain. They wanted to keep me overnight in the ER when the results of TSH came back to monitor me but i told them no and went home but had checkup with dr the following day. After research it appeared 14 was a high level but after reading the posts here it doesnt seem to be that high. This disease confuses me.
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Just a suggestion.  You'll get a lot more attention and response if you click on the button marked "Post Question"  and use your post to start a new thread under your own name.  I say this because sometimes a post tends to get overlooked when it is attached to another member's thread.  
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I was recently diagnosed with hypothyroidism 6 weeks ago. At my first doctors visit my TSH was 448. I am reading all of these blogs and have not seen anyone else with a TSH that high. I am on synthroid 75 mg now. I just got my blood tested again and waiting on results. Hopefully, the synthyroid helped some. I know it is not fixed yet because I still feel AWFUL!!!! I am only 31 and feel like I am 91. I have no energy, no motivation. NOTHING!!!! I think that I have ever symptom of hypothyroidism. I am keeping my fingers crossed and my head held high. Or at least trying.
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Avatar_f_tn
I've heard of people with higher TSH, but yours was extremely high...four hundred forty-eight is correct?

This disease takes a lot of patience.  It takes medicatin four to five weeks to reach a stable level in your blood.  You will most likely need a meds adjustment when the results of your bloodwork come in.  However, your doctor is doing the right thing.  It's best to start out low and increase slowly to avoid overmedicating and swinging in the opposite direction.  

When you get the results of your bloodwork, why don't you post a new question (you'll get more attention that way than you will commenting on an old thread like this)?  If you post results and reference ranges (these vary lab to lab and have to come from your own lab report), members will help you interpret them and let you know how you're doing.

Patience, patience, patience, and when that fails...more patience.
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I got my results back about three weeks ago, and my TSH was 488.   I'm gaining weight like crazy and the extra weight is killing my back!  I'm also always tired.  sometimes I nod off and don't realize it.  
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Has your doctor ordered more tests and started you on thyroid meds?

You must feel terrible...
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I got diagnosed over a year ago (also my sr year of college) at UCLA. My TSH level is 116, and I barely had any symptoms. Slightly abnormal tiredness/lethargy/inability to concentrate... but it was spring quarter of senior year. Also, weight gain was about 5 lbs within 3 years, so that wasn't really much. What finally got my attention was my boyfriend talked me into going to the doctor because of my extremely irregular menses, and thats how I ended up in the Endocrinology dept.
Never took it seriously because the synthroid didn't seem to do anything. I felt fine on my own.
Now, a year later my headaches are constant and my fatigue is back. This time i'm not in school. Still, with levels of 116, I never even felt that bad.
Looking to make that doctors appointment now, hoping I haven't screwed myself up more by ignoring the disease for a year.
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I hve a TSH level of 43.6 and my T4 level is normal but my T3 level is 3..I am having hot and gold flushes and weight loss is this normal?
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This is an old thread, and many of the people who participated in it no longer are on the forum.  You might go to the top of the page and post a new question using the green "Post a Question" button.  You'll get more attention to your individual concerns that way.
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I'm 19 yrs old and my TSH is 69.35 what should i do to reduce.
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This is a very old thread; you should start a new one of your own, so members can respond more fully.  have you had tests, other than TSH?  If so please post them, along with reference ranges; if not, you need at least Free T3 and Free T4....
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No offense, but how could BOTH of this kid's parents have a rarer form of acquired thyroid disease (juvenile onset) and *not consider the same diagnosis in their symptomatic child*?

It baffles the mind...no wonder doctors think their patients are stupid...lol!

Family history/genetics in many cases is the biggest predictor of how healthy you or your child will be. So choose your partners wisely! Hopefully preimplantation genetic diagnosis will improve in time as well.

That said, to be fair patients with thyroid disease almost always know more than the doctors. In fact, most patients can teach most doctors a thing or two. And they should...it might help someone else one day.

Glad to hear the child is alright...but holy smokes, if you have a family history of juvenile onset thyroid disease (as I do), you should actively be on the lookout for such in your child.

I don't know if this applies to your case (probably not), but if you also have other multiple autoimmune endocrine diseases affecting others in your family, you may have a rare atypical autosomal dominant AIRE gene mutation. These syndromes are usually recessive but some families may have rare dominant forms. In the case of your son, since both parents are actually affected and not just carriers, it could be dominant on both sides. Which means your son would have a 100% chance of passing on the disease should he carry 2 disease causing mutations. In autosomal dominant disease, only 1 copy passed on to the child is enough to cause the disease. Interesting. Or, he (and you, his parents) could simple have plain old run of the mill early onset thyroid disease related to HLA typing. In this case there is no single mutation that can be found, and the chance of passing it on is unpredictable (in the range of 25% or so).
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The highest TSH test that I had was 251 and I was on my deathbed. Right now my TSH is over 150, but we suspect it's much higher. The lab we go to only maxes out at 150. But my test is coming back at 150+ since Feburary of 2011. It's now October 2011 so it must be much higher by now. No one has given me a number that they say if I reach it I'll die. They just say that they know that I must feel horrible and like ****. (Doctors words not mine). And while I do, I don't feel like death is around the corner at any moment like last time. I'm just really really sick. My meds don't absorb for some reason. Either way it can get very high and you can survive it. I think it's one of those things where everyone is different. At 40 I don't feel it, but at 150 I sure as heck do. Get a good doctor on the university level. That's what I did and he saved me. I won't let this disease beat me. So few die from it, but it IS possible. I refuse to be one of them.
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Avatar_f_tn
You might want to start a new thread and ask any questions you might have on that.  Sometimes, you get better response doing that than tagging onto an old thread like this.  Many of the previous posters on this thread may not even be on the forum any more.  

If you do that, please tell us what other thyroid tests besides TSH your doctor has run.  You should provide results with reference ranges (these vary lab to lab and have to come from your own lab report).

Also, what are you taking for meds, and how do you take them?  
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you all need to calm down because i had didnt know i was hypothyroid and it turned out i had a TSH level of over 500...and i am 17 and still kickin'. good luck with all your thyroid endeavors. but do you guys think i could have gone into a coma with that high of levels? just curious. much love, bianca
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Avatar_f_tn
You could have, but you're young and your body can take a lot more abuse than some of us who are older and have other health problems as well.  I'm glad to hear you're still kickin' and hope you've found proper treatment.  Good luck!
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as of today ( just got off the phone with my doctor) the range is from .45 to 4.5 i wish my thyroid level was at an 85. mine is at 796.9. symptoms are terrible. dont rely on too many websites for symptoms and conditions. if you have it most likely someone you are related to has it as well because it is hereditary. if your glad is actually over sized you might have haroshimos disease. why is pretty much the exact same thing as thyroid disease. the main differences it that the the glad is enlarged and is considered a disease, hypo and hyper; the glad is notmal and considered a condition. but what ever you do stay on top of it. keep on your medication and get a check up every so often to keep the right dosage. im only 22 but ive delt with this for years and have done quiet a bit of reserch. it effects so much and if your not on you medication it will get worse.
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Wow, your TSH is 796?????   What is your doctor doing for you?  Are you on medication?  Have you been tested for the biologically active thyroid hormones, Free T3 and free T4 (not the same as Total T3 and Total T4), in addition to TSH?
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Hi, i am 19 years old. I was recently diagnosed with primary hypothyroidism. My TSH level was at 660 in my first blood test, so yes it can definitely exceed 600!
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I was diagnosed with hypothyroidism the exact same way. Everytime i ate anything i would get intestinal cramps/spasms and diarrhoea. Went to the doctor because i hadn't eaten anything in nearly a week (so had also lost weight) and my blood test came back with a TSH of over 600 and T3/T4 both between 0-1.
TSH can drop that much without treatment - i had another blood test a few days later and my TSH was at 530. It won't keep reducing without medication though, it just fluctuates a bit.
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When did you become an expert????  There are many factors that can cause Graves.....
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When did you become an export on Graves??? There are many factors that can cause Graves Disease.............
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What you say about change of formulation of product may account for fact that I have been taking my meds regularily yet latest Blood test has come back TSH >100........ Doctor has asked for repeat lab test today ......jic lab error. ...but earlier this year came down from 175 mg per day as I was over-replaced.....been up and down like a yo yo since.
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TSH is a pituitary hormone that is affected by so many variables, that it is totally inadequate as the sole diagnostic for thyroid status.  At best, TSH is an indicator to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T3 and Free T4.  TSH is supposed to reflect levels of the thyroid hormones, but it cannot be shown to correlate well with either Free T3 or Free T4, much less with symptoms.  

As a result patients being medicated based on TSH are often up and down like a yo-yo, like yourself.  On the other hand a good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and
Free T4 as necessary to relieve symptoms without being constrained by resultant TSH levels.  I think you can get some good insight about this from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

Take special note of this statement and always keep it in mind.

"The ultimate criterion for dose adjustment must always be the clinical response. I have prescribed natural dessicated thyroid for your patient (Armour or Nature-Throid). These contain T4 and T3 (40mcg and 9mcg respectively per 60mg). They are more effective than T4 therapy for most patients. Since they provide more T3 than the thyroid gland produces, the well-replaced patient’s free T4 will be around the middle of its range or lower, and the FT3 will be high-“normal” or slightly high before the AM dose."

How does this compare to the treatment you are getting?
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I have been a thyroid patient on synthroid for over 20 years after RAI and i have grave disease that is in remission.  Thyroid levels do cause Weight changes... And they affect your appetite.  All patients are different and some are more sensitive than others and all have different symptoms.  But speaking for myself.. slight hyper i have lower appetite and lose weight.. slight hypo i have a tremedous appetite and immediately gain weight mostly in my abdomen area and even watching what i eat and working out does not take the weight off.  Correcting my synthroid dose and adjusting my thyroid levels helps with both weight and appetite although its hard to get it perfect and or keep it there.  My average healthy weight is abt 123-125.. when my TSH starts to climb high i start to gain weight within weeks and soon as i adjust my synthroid to a highter level to bring my TSH back down my weight comes back down ... YES there are some peole that are just overweight and dont want to eat right or exercise and want to try and blame it on their thyroid and maybe that is what you were trying to say BUT thyroid levels DO affect Weight most of the time.. Just had to clarify that with my personal experience for people searching for some truths...
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I was diagnosed with an underactive thyroid 9 years ago. my TSH was 1753. this was the highest recorded in NSW and potentially Australia at the time to the point they had to invent  new test because the old one simply could not read that high a level. As such I can tell you high TSH can be very dangerous even fatal if untreated. It should be above 0.4 and below 4  for healthy range last time I was informed. If yours is higher than that you need more thyroxine or whatever hormone replacement treatment you take and you need it fast.
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You said your MD had perscribed 200mcg and will recommend an endocrinologist if that dosage does control a 85.5 TSH? Good grief! I thought you were already seeing an endo - as you call it.
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i have a baby who will be 1 next Saturday and he was born with congenital  hypothyroidism in his case he as NO THYROID at all. When he was 1st diagnosed at 1 week and 1 day old his TSH was 488 he was started on 50mcg of Synthyroid  his levels slowly went down then when he was about 4 months old he had a slight reset and was bumped up to 62.5mcg daily then  was fine for 6 months then his level went back up to 42.5 so he is now on 75mcg daily. We have been at this current dosage for about 3 weeks now and he is now showing signs of hyperthyroidism (don't sleep, can't stop eating, more energy than an average baby has) i will be getting his levels tested this week. I wanted to say most of what i have learned about hypothyroidism and being born without a thyroid gland i have learned form people who have experienced it....the endocrinologists i have dealt with are blown away by my knowledge and information.....sadly it seems the doctors have so little information on these subjects....i am thankful for each and everyone of you and telling your story!
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For reasons I already stated above, using only TSH to diagnose and medicate a hypothyroid patient does not work.  Please have a look at my prior post.  
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Hi can you help me.  I have hypo on say throid 125 but also have some difficulty with absorption issues due to 12 abdominal surgeries.  Today my Doctor's office called and said my throid CASCADE level (never heard of this before) was high and I need to have IV therapy within the next couple of days??? I do have a serious problem with weight ONLY since throid problems and have recently lost the majority of my hair ( I'm 54 and had beautiful full blindfish curly hair) and extremely tired, nausea ( common for me) tearful and no appetite ( also common). Wouldn't simply increasing my say throid do the same thing - what makes this so urgent?  I try to always see cup half full and all.  They also mentioned transfusion does low blood count go with a high cascade level? Or maybe the nurse got it wrong???? WHAT IS A THROID CASCADE LEVEL ANYWAY????? Never heard of it.... I should also mention I have a "small" adrenal mass could this be connected in some way?   I adore my doctor he is very kind and been in the background through all my other rough stuff, I do have specialists in NYC but live in Virginia Beach and like to keep life and especially my health not too complicated ( I found in NY it seemed to be one crisis after another, and that became wearing in itself) so once about 2 years ago when things ( multiple) seemed to be less complicated and more reasonable to manage I QUICKLY took the opportunity ( before the specialists had a second to find some other horrific ailment) and RAN back to VA and my lovely Doctor welcomed me home ( probably not thrilled but smiling all the same.....lol). Can someone shed some lint on this newest development why would this be so urgent and what is a thyroid cascade level??????    Thank you and sorry to bother you especially reading so many have it so hard wish I had a magic wand for all.  Thank you to anyone who can spare a minute or two and give me some much needed information.   Thank you all.     Stsmith
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This is a very old thread, and many of the people who commented haven't been on the forum in a long time.

Rather than post on an old thread like this, please go to the top of the page and hit the orange "Post a Question" button.  That will start a new thread in which members can address your individual concerns.  

Thyroid cascade is a test that first tests TSH.  If TSH is normal, no further testing is done.  If it's not normal, free T4 (FT4), total T3 (TT3) and thyroid peroxidase antibodies (TPOab) are also run.

When you post your own question, please post the actual results of those and include reference ranges that vary lab to lab and have to come from your own lab report.  Your doctor has to provide you that information on request.

I would think the urgency would be because your levels are so off, but we'd have to see those to comment.
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Yes tsh can go over 600. Last month I was in the hospital because my level was 637
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I know how sick you must feel but don't be afraid. I've been a patient almost my whole life and have gone off the charts over 600. So while 80+ is very high you're not in mortal danger. Try taking ur synthroid in the morning an hour before u eat and ask your doctor about an increase or maybe adding cydomel to your thyroid therapy

Goog luck

Dana
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As noted above, this is a very old thread and most of the previous posters have not been active on the forum in a very long time.  

For a better response, you can post your own question/comment by clicking the orange "Post a Question" button at the top of this page, type your question/comment, then click the green "Post a Comment" button.
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i have been cery ill and bedridden for 2 yrs,the dr.gives me a ct scan every 4 mos due to nodules in my lungs and upper lymph nodes.they havent chsnged,my recent tsh was 8.66 with a range of   0.35 - 4.94  i have 24 out of 28 symptoms of thyroid cancer...i see everyone with very high tshs..after the dr.read my results he said i need to see him right away,so if high is 4.94 is high and im 8.66 could it be cancer? i see the dr. on tues..

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my mom had throid cancer tsh was 0,05    and i run 8.66 which is way too high,im in severe pain sick in bed,am i at risk for cancer.?
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TSH is not a cancer marker and has nothing to do with whether or not you have cancer.  The symptoms you have are not of cancer, but of hypothyroidism.  

Is TSH the only test your doctor is doing? What about Free T3 and Free T4?  Those are much more important, but neither are they cancer markers.  

Are you on a thyroid replacement medication?  
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yes i got an ultrasound on my t roid  and a ct scan of my lymphnodes snd lungs.they have been watching them closely as i have nnodules in both,i also have luekocytosis (too high wbc) and i have polyclonal gamopathy and severe inflamation (inflammation) in another blood test,liver function shows fatty liver disease...i dont drink...so its a wait and see,i get the results on tues,hes looking at c/a right now....thank you,again my tsh is 8.66
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It's too bad TSH is the only thyroid test being done, because that's a pituitary hormone, which only "indicates" thyroid hormone levels.  You need the actual thyroid hormone tests.  Those are Free T3 and Free T4.  

That said, your TSH is too high and indicates a need for an increase in medication.

High WBC is common with any type of inflammation. The fatty liver disease is another issue.
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TY BARB YOU ARE VERY KIND,I WROTE HIM 5X AND I SAID TELL ME ARE YOU LOOKING FOR C/A HE SAID I WILL KNOW WHEN I GET THE RESULTS,THEY DID A CT OF MY UPPER LYMPHODES AND MY LUNGS,THEY HAVE BEEN WATCHING NODULES MAKNG SURE THEY DONT GROW..THEY HAVENT GROWN X2YEARS...THEN THEY DID THE US ON MY THYROID,SO HOPEFULLY HE WILL KNOW BY MONDAY...SRRY ABOUT USING CAPS I HAVE CATARCTS AND MY RETINAS ARE DETATCHING,IM LEAGALY BLIND AS WELL...IF THERES ANYTHING YOU CAN THINK OF TO TELL ME,PLEASE,AGAIN TY SO VERY MUCH
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Thank you for explaining the capital letters; typically, typing in all caps indicates that you're yelling and I didn't think that was the case, and it's much harder to read.

Many of us have nodules on our thyroid and they are nothing to be concerned about.  I can can see your concern, since you've got nodules other places, too.

Are you on a thyroid replacement hormone?  The symptoms you listed above are those of hypothyroidism and many of them might go away if you were properly medicated.  The fact that your doctor only does TSH, and not the actual thyroid hormones FT3 and FT4, tells me he's not well versed in thyroid conditions.  Many doctors who only test TSH, keep their patients ill for a very long time.

I'm curious - why are you bedridden?
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Dear Liz,
I have the same sx as you as far as heart and head explosions.  My TSH was 0.8 and I just got an email from the Doctor to count my pills.  She is every good, as you can see.  From your letter, it sounds to me like you should try a different Doctor.  I live near Boston, but, have found a very good endocrinologist here at home.  She emails me, and, I am free to do so also.  The symptoms are really devestating and my heart goes out to you.   Mary
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I have a tsh of 299.46 right now and I do feel like death. I have cheat pain and back pain, my body aches all over and my dr said he has never seen a tsh that high. I'm freaked out because I have to get chest x ray and blood work every 6 weeks. My dose has also been moved up to 175mg.
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  I am confused!! The last time I had bloodwork done the doctor said it was 0.608 and he said  that was real good!! I had my thyroid taken out in Dec. 2011 and I am still learning . What range is good? What is the range?
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I am 42 years female, recently i tested my Serum T.S.H. that result is 94.7 McIU/ml.

What can I do now
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This is a very old thread and your situation would get much more attention if you start your own thread.  You can do that by clicking the orange "Post a Question" button at the top of this page, type your question(s), then click the green "Post a Comment" button.  

Or you can access the thyroid forum via the following link:
http://www.medhelp.org/forums/Thyroid-Disorders/show/73?controller=forums&action=show&id=73&camp=msc

If your TSH is 94.7, I would imagine that you feel very hypo - your next step would be to visit your doctor and get on thyroid replacement medication.
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I am having the exact same symptoms...I had my thyroid removed on Oct 9th started my synthroid Oct 15th...was fine up until Nov.17th..then it was awful..constant all day anxiety attacks..pounding heart,chest pain,nausea,vomiting,diarrhea, shakey (shaky), hot one minute,freezing the next, muscle twitches..thought I was dying. finally last night Nov 28th went to ER..was told my TSH was 19.4 , called my endo doc and she said that meant I was hypo...confused because all my symptoms point to hyper. She is ordering some special hormone test tomorrow..I will let you know what it is and what happens..if you find and an answer before me I would love to hear it. Thank you
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I just got my tsh level today and it is 69 42 this is 12-7-12 the last tsh drawn was 59.39 extremely high I have requested referal to endo and primary dr insists on treating one more test if elevated I will change primary physicians and insist on endo dr to rx.also have a quest i have been having chest pain  on and off canthis be cause from elevate tsh,just wondering
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Avatar_f_tn
This is an old and long thread.  You'll get more attention to your individual concerns if you go to the top of the page, click the orange "Post a Question" button and start your own new thread.  
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please take your meds. i am NOT a dr but i was told at 12 i had hypo. i did have the radiation treatment to kill the thyroid.  i got preg at 16 and yes stay on meds cause being preg will take even more from your body and cause you to feel worse than you do now i am 34 and hadnt taken my meds for 2 months i went to the dr today and my level was over 300. i explained how i had been feeling lately as headache dizziness like im gonna pass out irritable aggervated all the time depressed and naseated. tired and weak. she told me i could go into coma from it being that off i had pausing between my words when talking and that showed her that my body was trying to shut down. started back on 150mcg levoxyl (generic) and can already tell slight diff. so please keep up with your med dr apts esp if trying to have a child. i have 3 ages 17 15 and 12. took my meds when preg. they sofar have no problems. good luck..
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my tsh number just came back at 628 and all they , drs, have me on is .35 of premarin hormone. im going to a gyn instead of just my primary, i think he's no longer able to function in the medical field as i swear the man is at least a 150 years old. hope to god these numbers go down, i hear the side effects of such numbers are horrific.
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I posted on your new thread.
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Hi,

My 4 year old had a starting TSH Level of 2004. Her second blood test was 6 weeks into Thyroxine treatment, her TSH still measured as 968.  Her most recent which was 6 week later again, 1.68, so perfect. :)  



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I'm sure that the Thyroxine treatment has been helpful to your daughter.  I just wanted to make you aware that TSH is a pituitary hormone that is supposed to reflect accurately the levels of the biologically active thyroid hormones, but in reality cannot be shown to do so.  As such, it is totally inadequate as the sole diagnostic for thyroid status.  At best TSH is an indicator to be considered along with more important indicators such as symptoms, and also levels of Free T3 and Free T4 (not the same as Total T3 and T4).  Also, when a patient is already taking thyroid med, TSH is even poorer as a diagnostic.  

So, I wanted to say that maybe not right now, but certainly in the future, you are going to need a good thyroid doctor for your daughter.  By that I mean a doctor that will treat her clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve hypo symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results and especially not TSH results.  

I realize that at her age, it is somewhat difficult to determine symptoms and their severity, but as she gets older, you will need to be attentive to symptoms and make sure you have a good thyroid doctor that will treat clinically as I described.  Such doctors are difficult to find because most of them rely on the "Immaculate TSH Belief' and only want to use TSH to diagnose and treat.  That does not work.  Others will test beyond TSH but then resort to "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere withing the so-called "normal' range is adequate.  That also is wrong.  

I think that this link, written by a good thyroid doctor will give you some good info for future reference.   Also, if you want to give us your location, it is always possible that a member can recommend a good thyroid doctor in your area.  

http://hormonerestoration.com/Thyroid.html

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Hi I have a range of 10 and was told I'm borderline by my GP but have most of the symptoms of low thyroid function! What is the range for commencing medication! My weight is creeping up and up even though I'm on a 500 calorie a day diet! It's getting me down!
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Don't be afraid to post to a new thread.  I think measuring TSH is not enough to determine what is going wrong, and what treatment is needed.

In general measurement of thyroid hormones at least T4, and really both T4 T3 are needed along with an thyroid antibody test.  

So you should have your TSH, T4, and T3 tested again, with antibodies tests in say a month or two. You want to know the actual thyroid hormone levels that's T4 and T3.  And antibody tests, which may point to autoimmune disease.

One other thing to consider is dieting  If you are on a near starvation diet, 500 calories, that can effect thyroid function.  Also if your diet doesn't have enough iodine in it, or you have other vitamin or mineral deficiencies, that can cause hypo-symptoms.  I'm not a doctor, but I'd try and get those sorts of things, checked out, and corrected before trying thyroid meds.
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My mom is in the hospital and she has a TSH of 96 and rising. I got on chacha and asked them if she could pull through, and it says she will most likely die. Is this true? Can she recover? They are sending her home today, because she does not have insurance and cant afford to stay any longer. They have not prescribed her any medication or done anything. are they even allowed to do that. Just let her get sicker and sicker?
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People very rarely die of hypothyroidism because it moves very slowly.  A TSH of 94 is high and indicates further testing is in order and that meds might be appropriate.  She can recover (as far as her thyroid issue is concerned).  I don't know what they are "allowed" to do and what they aren't, but you should get her to a doctor ASAP and have her FREE T3 and FREE T4 tested along with a repeat TSH.  The doctor will determine from those if she needs meds.  Best of luck.
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i am 6 weeks pregnancy my Tsh-6.07, T4-13.4. i am very tense pl tell me what to do. earlier i had not taken any medicene
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What was your doctors advice, or are you waiting to see him?

You haven't posts lab ranges.  But I don't think your hormones are very far off.  TSH is slightly high and T4 at the low end of normal.  So not causing your baby any problem.

Thyroid problems do tend to show up during pregnancy or after. Also, need for thyroid hormones peeks in the first trimester and falls in the second trimester.

I think there is debate on what do do with pregnant women whose TSH is slightly high like yours.  I think that's because nothing bad happens if it's not treated or if it's treated with meds.

I'd expect you doctor to have more labs done.  Any advice he gives is likely okay and your baby will be fine.
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Avatar_m_tn
My TSH levels were 493..age 25...had no other problems except mild edema/swellling that pushed me towards a doc ...taking the generic version now...after the pills began , in the first week,had the common post-therapy symptoms like heart palpataions etc but now they are moderating with time...my doc told me to strictly follow 125 mg dose...next tsh test he told to be done after 2months after which he expects it to drop it to around 150....I'm worried though that the 493 tsh level would have already caused damage to other systems of my body..anyways that's gone..is there any other tests that is recommeded that I should do to stop diagonise any other problem that might have started and that could be arrested due to such tsh high tsh levels...i meas 493 would have builtup over time...so little anxious..
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Avatar_f_tn
Im actually in the hospital now with a tsh level of 145. Its the highest my hospital ever seen. Im only 22 but just had a baby 6 months ago. After delivering i suffered for 6 months with extreeeme fatigue, naseau, pain, dizziness, blurred and double vision. No joke. I had no iclue what was wrong. Finally i came to the er and thank god i did. I urge u to go straight to the er.
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Avatar_m_tn
My TSH was at one point 273.45 and put me in the hospital for 7 days.  During that 7 day stent in the hospital, I was given synthroid through my IV.  The Dr. had me do an absorption test to see if I was getting anything from PO meds.  After a 2,3,4,5 and 6 hour blood draw, it was discovered that I wasn't absorbing my medication via PO.  I was discharged with orders to receive 500Mcg intravenously once a week.  My numbers went down drastically for the first 2 months.  The Dr. started me on 100Mcg PO daily in addition to my weekly infusion to see if there was a difference in my levels.  Instead of going down, my numbers have started creeping back up again.  The Dr. increased the PO to 200Mcg daily and still on the weekly infusion and my numbers are still creeping upward.  Not sure what the next step will be yet.
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Avatar_m_tn
I have noticed that there is no mention of what kinds of replacement meds are available for hypothyroidism.  If you are taking your medicine like you are supposed to and your numbers are still high, you may want to ask your doctor for a different type.  When my numbers were constantly reflecting >100, my doctors first increased my dosage then took me off of synthroid and put me on Armorthyroid.  The difference is that synthroid is a synthetic blend and Armorthyroid is not, it is taken from a pig and not made in a lab.  That could be the difference your body needs.  For me, it wasn't the type of pill, but that I wasn't absorbing period.
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I recently had a TSH level of over 800. I can tell you that I thought I was dying, really dying. The level has gone down some and I feel a little better. I'm on 100mcg daily of levothyroxine. Also seizure & hypertension meds.
But, I have Hashimoto's Encephalopathy. Very rare, and even harder to find a doctor who even knows what it is! The symptoms are seizures, uncontrollable muscle spasms (arms & legs), aphasia (affects speech and word association), insomnia, and a few other things that would take to long to explain :).
I have been searching for ANYONE who has been diagnosed with HE just to talk to. I have been searching for 5 years now. PLEASE, if anyone has this disease or knows someone who has it I would welcome any type of communication about it.
This forum is great! Thank you so much for sharing :)
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Avatar_m_tn
Have you seen this info and link to further info?

http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm
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Thank you very much! I had not read anything from Beverly Seminara  and it has proved helpful :) Most of the information about HE on the internet has not been updated for 5-10 years. But her research is up to date. Thanks again!
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Avatar_m_tn
I can only say from my own expierience .150mg of levo worked for me . I'm a 53 year old male and my TSH was 28. I'm around 250 now down from 275. This was my weight even though I work out and ride a bike several times a week. Not only does it work I don't feel I could survive without it. My TSH is also around 6. Be careful when they up your dosage. .175 mg made me sick so I convinced my doc to back down to .150mg. Find your balance on this hormone stuff and remember, how you feel is just as important as getting that number down.
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Avatar_m_tn
I know you didn't ask any questions, but I could not help responding that how you feel should be all important, not test results, and especially not TSH.  Have you been tested for Free T3 and Free T4.  If not, you should make sure they test both every time you go for new tests.  Free T3 is the most important because scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  

You have been taking large doses of T4 med.  Sometimes hypo patients find that their body does not adequately convert the T4 to T3, resulting in low levels of Free T3 and hypo symptoms.  This will show up in the Free T3/Free T4 test results.  When conversion is inadequate the addition of T3 med is required to raise the Free T3 as necessary to relieve symptoms.

Since hypo patients are also frequently too low in the ranges for Vitamin D, B12 and ferritin, if you haven't been tested for those you should do so.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf

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Avatar_f_tn
When I found out I had hypothyroidism,  my tsh was 1000... yes, that's 3 zeros. And a few years ago I wasn't able to take my synthroid for 3 months and it was 1200. My dr flipped.
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