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