VERY high TSH - Interested in range information

[sdp1988]

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?

[lhowell]

New range as of 2003 is 0.3-3.04

[lhowell]

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.

[GravesLady]

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!

[sdp1988]

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 :)

[sdp1988]

I'm sorry.. yes, I am taking synthroid.  I put my dosage but not what I was taking!

[GravesLady]

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.

[sdp1988]

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!

[MonaJ]

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.

[GravesLady]

In the morning, on an empty stomach and an hour before eating :)

[Mommy?]

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?

[GravesLady]

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!

[Anxious in Tucson Arizona]

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

[GravesLady]

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

[Anxious in Tucson Arizona]

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

[GravesLady]

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

[Anxious in Tucson Arizona]

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

[Liani]

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

[khuffman]

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!

[GravesLady]

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!

[GravesLady]

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!

[Cindee11461]

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.

[khuffman]

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.

[khuffman]

I started the Levoxyl yesterday.  When will I see results?  Thanks, Kim

[bri1975]

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

[bri1975]

They also said I had meniere's disease but I knew that was it.<<<< I meant wasn't it. Sorry all.

[lizworden]

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

[c4p0ne]

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!

[luts]

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

[snuoid]

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!!

[kitty9309]

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.

[medhelp20]

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?

[kitty9309]

Post this under a new thread and you may get more of a response.

[Jaclynn]

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.

[kitty9309]

WOW!!

What symptoms did he have?

I wish him the best for a speedy recovery.

[Jaclynn]

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.

[Jaclynn]

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...

[kitty9309]

"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?

[Jaclynn]

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 :)

[kitty9309]

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.

[Jaclynn]

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.

[debj52]

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

[worriedinmd]

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!

[Jaclynn]

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.

[ger17]

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

[EN24]

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.

[kaviraj]

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.

[cbrocket]

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.

[ChitChatNine]

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~

[Kinley]

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

[sharone]

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.

[mace96]

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.

[kiyuki7]

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

[dipjones]

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!

[Jewell911]

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

[Mmgarner6]

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

[Lily2310]

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!!

[bluberry]

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...

[subspeed]

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

[alimal]

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?