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158939 tn?1274915197

TSH ping-pong 75.9 to 0.17 in six weeks

Having been extremely hypo with at TSH of 75.9 then having my labs run today and having a 0.17 I have to say I'll take hyper over hypo any day.  :-)

The coldness, exhaustion, cramping, and (most of) brain fog are gone and are now replaced with heat intolerance, insomnia, and agitation.  I'm watching for the heart palpitations and fast heart rates.  Made an urgent appointment with the endo for next week - thinking the meds may need to be adjusted a wee bit.  
:-)  Oh, the weight loss thing never did kick in - I've put on 8 lbs since coming off the LID at Thanksgiving.  Leave it to me, the one good side effect is the one I DON'T get.  :-)

This is the lowest my TSH has been and I know what to watch for with thyroid storm.   I dropped from 2.1 to 75.9 in just three weeks then back to 0.17 six weeks later so I know that my levels can move quickly.  I have another week until I see the endo so I'm afraid it may drop a bit lower.

My question is; how low can the TSH levels go before I really have to worry?


Bad time to stop HRT - I'm having double hot flashes!!  If you see a warm glow coming from somewhere in the Western half of the U.S. it's me.  :-)

18 Responses
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Avatar universal
Hi everyone, I am new here. I am really not doing well and need some help. I have had Hyperthyroidism for six years but have never treated it. I was always borderline and not able to be treated for quite a few years. I neglected it when it wasn't borderline anymore due to the fact that I was on Medicaid on and off for years and at some long periods of time had no Medical Insurance at all. Currently, I am not covered since I just moved from NY to Las Vegas and have not had the time to sit in a Medicaid Welfare office for a whole day or two. I have SO much stress and things going on with my son and the school system out here that I always put myself last, my son is Autistic and he MUST come first. He is my first Priority.
Well, last night was a bad night, I had to go with my boyfriend and my son to the Emergency room at 1 in the morning and I NEVER like to go to the hospital OR the doctors but I was SCARED. My heart rate is always a bit faster I guess due to the Thyroid being overactive but I was experiencing shortness of breath, fast heart rate and a pressure in my neck and right under my collarbone which was nagging at me for about a week but seemed to be more noticeable last night. I honestly thought I had a clogged artery and was having a heart attack. I WAS told this could be stress causing this and I have had a BAD last two weeks filled with stress. Well, it's 24 hours since I went to the hospital last night and when I came home it was still botheing me a bit and now it's still there a bit also, it comes and goes but they gave me a CAT Scan to check for Blood clots, a Chest X-ray to see my lungs and check to see if my heart was enlarged, an EKG, as I am a smoker I knew I was at risk, well, not anymore since yesterday, I am really trying to quit this time, it's been way over 24 hours since I smoked and believe it or not my chest hurts! I don't know if I am clearing out my chest or what but I haven't touched a cigarette in over a day and they did bloodwork on me also to check my heart and my complete bloodcount and my TSH  which is always the one that is messed up and abnormal. My number was 0.01, the Doctor said it was definintely not functioning normally, that much I knew, I am sick every single day, plus in the last few months I feel that I am deteriorating and I don't know what to do? Now, the ER doctor wants me to see a doctor tomorrow or Thursday but I have to PRAY that the doctor he suggested I see, will take me with NO medical insurance and work out some sort of a payment plan for me, I mean, I really don't know what to do if I can't get anyone to see me? I guess I will go back to the ER then tomorrow night.
I am 32 years old, I feel sick every day and my son is 10 years old and needs me more then anything, so I am FINALLY going to get up and do something about this as I feel I am in danger if I don't. Does anyone have any suggestions to how my thyroid will be treated to start with? What do you think is causing this chest pain and pressure and discomfort? I really need to start feeling better and I need to really slow down my thyroid, I have heart palpitations, shortness of breath, racing heartbeat, insomnia, FATIGUE, I have also gained a TON of weight (I NEVER did get the weight loss with being hyperactive), My hormones are SO out of wack because my periods are not regular anymore either, I was diagnosed with mild PCOS also in July by my Endocronoligist in NY but he didn't start me on treatment since I was moving within the next few days and wanted me to get a doctor here in Las Vegas. I am currently taking Medroxyprogesterone to make my period come since I havent had one since November 25th and it's February 7th already and I am SO bloated and fatigued and feel horrible, so it really needs to come. The thing that scares me is since I have never treated my thyroid EVER do you think I have done damage to my heart or my body in general? They checked my blood for heart problems, did the CAT SCAN, EKG and a Chest XRAY, they said they did not feel the pain and pressure was coming from my heart but of course they didnt know for sure, should they have done an Echocardiagram? Should they have done a Stress Test? My Grandmother died at 38 years old in her sleep of a massive heart attack and that is why I know they were being a bit more careful with me but I still feel like something is not right. I don't know if the pressure in my chest, heart palpitations and shortness of breath are coming from my heart, my thryoid problem OR the Medroxyprogesterone that I am on and finished as of tonight to make my period come? If anyone can PLEASE help me, I would appreciate it so much, I am scared to death that something might happen to me if this is left untreated within the next few days.
I am calling the doctor tomorrow to see if he will see me with no medical insurance.
Please if anyone can help me I would appreciate it mor e then anything, thank you.
Helpful - 0
Avatar universal
You said you went hyper from over medication. Since I believe that I'm going through something similar and my medication has recently been reduced. How long did it take for yours symptoms to go away? My resting pulse isn't as high as yours but my BP is definitely up and although I'm not having panic attacks anymore I'm still anxious and am taking Xanax to manage that. I'm still having problems maintaining sleep. My eyes are definitely red and irritated.

I've been on Thyroid meds since June 2005 and added 10mcg of Cytomel in March 2006. My endo had been raising my T4 dose up to 88mcg but I was still having muscle pain, exercise intolerance and mental issues. I had started 2gr of Armour in December 2006 and started having mild panic attacks at work on 1/22. My doctor lowered my dose to 1.5gr of Armour on 1/29 (This is close to the same dose I had in March 2006 50mcg T4 and 10mcg T3. I had skipped meds on the previous day. I realize that it has only been about 5 days but I guess not knowing how long the anxiety will last bothers me. After you were on a correct dose how long did it take for the high blood pressure, anxiety and high pulse go away? When should I think about asking the doc for another decrease? (I should have known the weight loss was too good to be true.)
Helpful - 0
Avatar universal
I went through hyper thyroid last February due to being overmedicated.
I had no idea what was going on.
My resting pulse was 150.
Blood pressure shot up.
I was put on atenolol for the palpitations for a short time
was taken of synthroid.
My TSH was .006
Well I have learned so much over this past year from all of you
I am learning to educate myself concerning my thyroid cancer.
What an experience.
Wish you well.
Thanks for sharing,your posts are very helpful.

Helpful - 0
158939 tn?1274915197
Thanks for your post - it helps.  So far I'm feeling great.  What a difference from the hypo hell I was in just a month or so ago.  I'm developing a big appreciation for my daughter and her bipolar disorder, hypo to hyper sure feels bipolar!

I guess I learned things backwards.  Go into the OR knowing nothing about your thyroid, be told you have cancer, then figure it out from there.  I had no idea about hypo, hyper, Hashi's, Graves, or even where my thyroid was located.  What a way to get an advanced degree in thyroid disorders!  :-)

Thanks for your input.  So far the hot flashes and agitation are just mildly aggravating but I'm keeping close tabs on my pulse, BP, and for any palpitations.  Luckily I have a low BP but I have a resting heart beat of 80+ so I have to keep *really* close tabs on that.  

I swear, I'm going to have a looooonnngg chat with my relatives "on the other side"!  They should have dated further away from the family village, I swear.  :-)
Helpful - 0
Avatar universal
Thanks for answering that question for me.
Love Venora
Helpful - 0
Avatar universal
I think the consensus is that the lower the level below the TSH of 1 the better it is for cancer patients for suppression. I think the target level of TSH 1 is more for those that had their thyroid removed for other reason than cancer. My endo has me highly medicated and my last TSH was 0.03. He was very happy with that saying that the closest we get to 0 the better I will be. I'm with you utahmomma, I'm medicine induced hyper and can't lose any weight either. Aren't we the lucky ones, LOL!

"In general, thyroid hormone suppression therapy is targeted towards distinct levels of TSH suppression. Therapy at the greatest extreme aims to suppress TSH to an undetectable level, usually expressed as being less than 0.01 mU/L. Therapy at more moderate levels aims to suppress TSH either to just below the normal range (expressed as 0.1 - 0.5 mU/L) or the lower end of the normal range (expressed as 0.5 - 1.0 mU/L)." http://www.thyroid-cancer.net/topics/what+is+the+target+TSH+level
Helpful - 0
Avatar universal
duh I tell you! I will be normal soon and hopefully back to normal. Thanks for listening and helping. This chat room is helping me keep my mind off everything and you know how the whole depression thing and everything else can get you
Helpful - 0
Avatar universal
ok Utahmomma remember I am still slow cause I haven't been on meds. If I have no thyroid how can it be hyper would't it be hypo. Sorry if its a dumb question jus wondering
Helpful - 0
158939 tn?1274915197
You posted two different things.  98 is way above the recommended levels and would be hypo (since you had RAI a few days ago I'm betting that's your reading).  You also posted .98 which would be exactly what your doctor would want and, by the TSH standards, would make you hyper.  Hyper is good - within limits.

Don't worry, you'll be there in about six weeks or so.
Helpful - 0
158939 tn?1274915197
You're bored out of your mind being isolated following RAI, aren't you.  Been there, thank heavens for computers!!

When you've been through thyroid cancer most endos want to keep the TSH level somewhere around 1.0 so your .98 is *perfect* (and is hyper, not hypo).  Your levels will probably change after your levels balance out on your thyroid medication following our RAI.

Here's the new TSH level recommendations (stolen from Ask.com)
***************************************************
(June, 2006)  Even though recommended changes to clinical laboratory standards were announced last year, the American Association of Clinical Endocrinologists (AACE) identified changes early this year, and journals are publishing information about the findings, your doctor probably is still unaware that a major revamping has been done to the so-called "normal range" for Thyroid Stimulating Hormone (TSH) tests -- the primary blood test used by conventional doctors to diagnose thyroid disorders.
    Until recently, the standard was that the normal range for TSH at most laboratories has fallen in the 0.5 to 5.0 range, with hyperthyroidism being below .5, and hypothyroidism above 5.0.
    The new guidelines, however, the range for acceptable thyroid function, and thyroid treatment should be considered for patients who test between the target TSH levels of 0.3 to 3.0, a far narrower range.
*******************************************************

Your doctor will want to keep your TSH level low and watch it closely because a climb in your TSH *could* indicate a growth of thryoid tissue and require another dose of RAI (this is how they found my cancer was regrowing - my labs jumped 3x higher in 6 months)
Helpful - 0
158939 tn?1274915197
I know - my depression during RAI was the worst I've experienced.  Hang in there!  You are going through so much right now but you have this board to keep you afloat!!  You'll be okay.  Circle Valentine's Day on your calendar and shoot for that.  Use it as a goal.  By then you should be feeling much better and what a great day for you and your boyfriend to celebrate being there for each other!!!
Helpful - 0
Avatar universal
Great idea!!!!!
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Avatar universal
by the way yall teach me so much. Maybe we should go to endo school. Nah no energy.
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Avatar universal
Well they told me normal was 5 and they did the test you told me they would before RAI. It came back at .98 or 98 whichever hypo would be I guess. Does that seem worrisome
Helpful - 0
158939 tn?1274915197
Thanks.  I did read your post below but haven't gotten to a reply yet so this will have to do.  :-)

My endo had me on 150mcg for over a year then went to 175mcg.  About a year ago he increased it to 200mcg but the TSH continued to climb (hence the RAI).  I'm pretty sure he's going to back me down to 175 or 150mcg  (sniffle).  I just didn't want to wait the two months it would take to get in to him on a regular appointment since I felt a huge "shift" in my heat tolerance, mood, etc. around New Years and figured my TSH was down around (or below) the target range we established of of <1.0.

I'm watching out for the cardiac symptoms but no problems so far.  My car knows the way to the emergency room if there are symptoms.  :-)

I'm taking myself off my HRT since I can't get in to see the OB/GYN until *OCTOBER*  - gee, a rush on OB/GYN appointments in Utah, go figure.  :-)  I've spoken with his nurse however and told her what I'm doing and he okay-ed it.  I'm stepping down slowly *unless* my mammogram next week isn't good then I'm going cold turkey on the HRT!

If my body is storing extra thyroid hormones in my thighs (it's storing SOMETHING there) it can go ahead and dump those - oh, and the waist too.  I'm hoping that the rapid weight loss kicks in pretty soon but, knowing my luck . . .

Thanks for all your help on this.  The labs still have me confused.  Give me a suspicious nodule to talk about any day!

Helpful - 0
158939 tn?1274915197
Remember your thyroid is basically the controller of your body's metabolism.  Kind of like a regulator valve or thermostat.  When it's not working correctly either everything slows down (hypothyroidism) or speeds up (hyperthyroidism).

Thyroid storm is a rare, dangerous, sometimes life threatening condition that can be brought on by thyroid surgery, RAI, over medication (my concern), and extreme hyperthyroidism (TSH too low).  It's something that the hospital staff watches for closely after TT and, if hospitalized, RAI.  I'm just concerned about it since my TSH levels are crashing so quickly and I'm showing some of the symptoms (which are also signs of hyperthyroidism so I'm keeping close tabs on it).

Here's a pretty good description and list of symptoms from
http://thyroid.about.com/od/hyperthyroidismgraves/a/thyroidstorm.htm

During thyroid storm, the heart rate, blood pressure and body temperature can become uncontrollable high. Whenever thyroid storm is suspected, the patient must go immediately on an emergency basis to the hospital, as this is a life-threatening condition that can develop and worsen quickly, and requires treatment within hours to avoid fatal complications such as stroke or heart attack.

Symptoms
High fever of 100 to as high as 106
A high heart rate that can be as high as 200 beats per minute
Palpitations, chest pain, shortness of breath
High blood pressure
Confusion, delirium and even psychosis
Extreme weakness and fatigue
Extreme restlessness, nervousness, mood swings
Exaggerated reflexes
Difficulty breathing
Nausea, vomiting, diarrhea
Recent dramatic weight loss may have taken place recently
Profuse sweating, dehydration
Stupor or coma

Sounds like fun, eh?  :-)
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Avatar universal
I answered to your post down below.

Going off HRT is going to change your levels.  I don't know to which direction, I haven't checked my notes, if I have any on this subject.

Also that is why I say to dose slowly, that is, change dose to the next dose, to the next dose, and so on.  Also make sure you wait plenty of time between dose changes to give the pill/new dosage plenty of time to work for you.

Also our body stores extra thyroid hormone in other parts of the body, that the body needs to and does get ride of. So you might see this reflected in your Labs.  For most this takes a couple of weeks, that is why it is suggested to watch out for thyroid storm especially for us hypers. Thyroid storm usually happens around this time that the thyroid is getting ride of extra stored thyroid hormones...it is called dumping.

You'll be alright - just keep the endo appointment and discuss it.
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Avatar universal
whats a thyroid storm
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