# my TSH is going all over the place and I dont know what to do



## chuluota

Here is what has been happening this week. My body is feeling like a rollercoaster.

all these are at asme lab with ref. at ...... 0.450-4.500

In the last 11 days my TSH has gone from 1.360 &#8230;. to 4.600

I am taking the .44 synthroid for the last 7 days up to taking the test.

I did not take my synthroid the morning of this test &#8230; that was the first time I had taken the test with out the morning dose of the synthroid &#8230; so the TSH I had in my system was left over from the day before.

January --- I was taking .44 and TSH went to 8.630 &#8230;
(as of test 2/2/10)
felt very sick &#8230; couldn't do anything

February --- I was taking .88 and the TSH dropped to 0.353 
(as of test 3/3/10--- in 30 days it made that change)
to low &#8230; shaking .. hair falling out in hand fulls&#8230; heart rate very high even when sleeping

March --- I was taking .66 the TSH went up to 1.360 
(as of test 3/25.10 &#8230; in 22 days it made that change)
still to low &#8230; shaking .. hair falling out in hand fulls&#8230; heart rate very high even when sleeping

March 28th I started taking .44 and on April 5th my TSH is Back Up to 4.600 (as of test 4.5.10 .. in 8 days it changed from 1.360 to 4.600)

I don't know what to take.

I read all the time that it takes weeks for the meds to makes changes .. but in me it happens in days ... huges swings

What do you guys think about this?

Thanks .. and many Blessings
Chuluota


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## Lovlkn

chuluota said:


> Here is what has been happening this week. My body is feeling like a rollercoaster.
> 
> all these are at asme lab with ref. at ...... 0.450-4.500
> 
> In the last 11 days my TSH has gone from 1.360 &#8230;. to 4.600
> 
> I am taking the .44 synthroid for the last 7 days up to taking the test.
> 
> I did not take my synthroid the morning of this test &#8230; that was the first time I had taken the test with out the morning dose of the synthroid &#8230; so the TSH I had in my system was left over from the day before.
> 
> January --- I was taking .44 and TSH went to 8.630 &#8230;
> (as of test 2/2/10)
> felt very sick &#8230; couldn't do anything
> 
> February --- I was taking .88 and the TSH dropped to 0.353
> (as of test 3/3/10--- in 30 days it made that change)
> to low &#8230; shaking .. hair falling out in hand fulls&#8230; heart rate very high even when sleeping
> 
> March --- I was taking .66 the TSH went up to 1.360
> (as of test 3/25.10 &#8230; in 22 days it made that change)
> still to low &#8230; shaking .. hair falling out in hand fulls&#8230; heart rate very high even when sleeping
> 
> March 28th I started taking .44 and on April 5th my TSH is Back Up to 4.600 (as of test 4.5.10 .. in 8 days it changed from 1.360 to 4.600)
> 
> I don't know what to take.
> 
> I read all the time that it takes weeks for the meds to makes changes .. but in me it happens in days ... huges swings
> 
> What do you guys think about this?
> 
> Thanks .. and many Blessings
> Chuluota


What was your initial dx and when?

My first suggestion would to be insist on FT-4 and FT-3 testing along with the TSH for future lab's.

If you have antibodies they can skew your TSH result, TSH is a screening test NOT a test to dose on although alot of doctors use it just for that.

You might try alternating doses for awhile and see if your labs level out and symptoms decrease. Hair loss is common when beginning thyroid replacement or with any thyroid fluctuation.


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## Andros

chuluota said:


> Here is what has been happening this week. My body is feeling like a rollercoaster.
> 
> all these are at asme lab with ref. at ...... 0.450-4.500
> 
> In the last 11 days my TSH has gone from 1.360 &#8230;. to 4.600
> 
> I am taking the .44 synthroid for the last 7 days up to taking the test.
> 
> I did not take my synthroid the morning of this test &#8230; that was the first time I had taken the test with out the morning dose of the synthroid &#8230; so the TSH I had in my system was left over from the day before.
> 
> January --- I was taking .44 and TSH went to 8.630 &#8230;
> (as of test 2/2/10)
> felt very sick &#8230; couldn't do anything
> 
> February --- I was taking .88 and the TSH dropped to 0.353
> (as of test 3/3/10--- in 30 days it made that change)
> to low &#8230; shaking .. hair falling out in hand fulls&#8230; heart rate very high even when sleeping
> 
> March --- I was taking .66 the TSH went up to 1.360
> (as of test 3/25.10 &#8230; in 22 days it made that change)
> still to low &#8230; shaking .. hair falling out in hand fulls&#8230; heart rate very high even when sleeping
> 
> March 28th I started taking .44 and on April 5th my TSH is Back Up to 4.600 (as of test 4.5.10 .. in 8 days it changed from 1.360 to 4.600)
> 
> I don't know what to take.
> 
> I read all the time that it takes weeks for the meds to makes changes .. but in me it happens in days ... huges swings
> 
> What do you guys think about this?
> 
> Thanks .. and many Blessings
> Chuluota


Chulota!!! You poor woman. Are you sure you are hypothyroid and not hyperthyroid? Symptoms sometimes cross over and as lovlkn has said, "One must get the TSH, FREE T3 and FREE T4 test to know for sure!" Not to mention various antibodies such as below.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies),TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

Let's just "suppose" you are hypo. If that is the case, changing doses so frequently is very counter productive. One must stay the course for at least 8 weeks and then lab.

And, how is your ferritin? If your iron stores are low, that would interfere with the efficacy of your thyroxine replacement.

Is your doctor calling for these frequent TSH Tests?

Sending hugs,


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## chuluota

Thanks guys for all the support!

I have had the total thyroid panel done a couple times

3/25/10
tsh .......1.360
Thyroxine (T4) ........10.4.........ref ---4.5-12.0
T3 Uptake.............34....%...ref---24-39
Free Thyroxine INdex........3.5 .......ref----1.2-4.9
T4, Free (direct) .......1.42 ------ref-----0.82-1.77
Triiodothyronine, Free, Serum .......2.4------ref-----2.0-4.4

one weird thing is myt White Blood Count droped from 5.1 to 3.8 .... in 22 days (but iwill say every one in my house has had the flu and the Lord has protected me from it ... so I may be fighting that off)

I also tested low ...Vitaim D .....24.6 ----ref----32.0-100.0
I tested on the low end for vitamin B12 ...350.....ref----211-911
I tested on the HIGH end for Cortisol ......18.6----ref----6.2-19.4

Any ideas with this?

I also have a lot of nausa... like between 10 and 2 seems to be the time that I really feel sick. I never ever throw up. It it does pass .. but it makes me really sick

Thanks again
Blessing 
Chuluota


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## chuluota

I wanted to add that my "iron serum" is always between 77 - 94 on a ref of 35-155

is this the same a Ferritin?

thanks
Chuluota


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## Lovlkn

chuluota ,

I ask again -

What was your original diagnosis?

Also...
1) what medication are you taking?
2) what dose?
3) what strength?
4) how long have you been on that dose?

Lovlkn


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## chuluota

Sorry 
My original diagnosis was hypo

I am taking synthriod

it was .88

I have been taking it for several years

this past july i went to the dr feeling very anxious .. shaky .. even though I did not feel that way in my personal life ... it was like my body was doing something on its own .. i felt calm and happy but my body felt like it was having a panic attack ... I hope that makes sence

long story short .. (i have posted about this in other posts .. in great detail )
dr said she thought it was stress .. (isnt that what they always say lol)
she gave me lexapro ... i took it twice ... ended up in and out of the hospital 8 times .. they said i had a serotonin reaction... it was crazy .. i truly almost did not make it.

i lost 27 pounds .... (down to 115 .. on 12/31/09)
no one knew what was wrong or how to help me

they wanted to put a feeding tube in because my digestivesystem was so bad i could only eat a few bites a day ...

I fought it with every ounce of power I could get .. Totally through Prayer and the love of my family

I have gone from less then 100 calories a day to 2,000 plus calories a day ... I now weigh 124 pounds!!! Answered Prayers!!

It has been 176 days since I got out of the hospital

I have gone from not being able to walk to the bath room with out my husband holding me up ... to today April 10th ... I have already ridden my Bike 60.5 miles this month!!
Feb. I rode 12 miles the whole month ... and was proud and amazed that I could do it!
March I rode 58 miles the whole month ... shocked and being thankful to God every day!!
April ... who knows how far I will go ...

but I am still fight this thyroid... It keeps me sick .. shakes.. nausa... depression ... (not all the time .. it comes in waves... I will be happy and feeling really good and BANG... like a light swithch is flipped ... I am sick!) and then in one to three hours it is gone ...

before this happened I was a healthy .. strong .. happy ... busy woman
(and loved to eat .. big family ... big cooking .. big eatting ... pta.. church.. lunches.. dinners out 2 or 3 nights a week ... I miss it 

sorry this is so long but my life has been torn away from me since July 29, 2009

I am on no other medication of any kind .. no vitaims.. or herbs

Synthroid ... .44 that is it

My labs are all over the place .. I feel like I change by the hour in how I feel..

Thank you again for your time and help
Blessings
Chuluota

I am a fighter and I will keep fighting until I am well again ... but I dont know what it is or how to fix it ...


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## chuluota

Hi
I having such a bad day~~ some days are better than others but today was really really bad.
I ache in my sides .. like rib cage .. and my back.... and to make matters more weird..when I walk on my left foot, when i step down on it the bottom of the heel part hurts .. like the ball of the foot on the bottom ....two days ago it was my ring finger on my right hand. What is this all about? it is just nuts...
Kind of weepy also ... 
And last weird thing of the day...
I get this sick feeling at almost the same time during the day. 
I take my synthroid at 6 am every morning and I start to feel bad around 10 and by 11 I really feel bad ... and it passes around 2 or 3
ANY IDEAS AT ALL?
Thanks and Blessing
Chuluota


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## Lovlkn

chuluota said:


> Sorry
> 
> this past july i went to the dr feeling very anxious .. shaky .. even though I did not feel that way in my personal life ... it was like my body was doing something on its own .. i felt calm and happy but my body felt like it was having a panic attack ... I hope that makes sence


I completely understand that feeling. What was your heart rate when this occurred? It almost sounds like anxiety but if heart rate was normal I think it has to do with too much Synthroid - at least at that given day.

It sounds like you body is having an increase in the thyroid disease process - especially since your labs are unstable. Have you ever had antibodies tests run?

When were your last labs for antibodies?

Did they run TSI and TPO?

Does your doctor run any test other than the TSH such as FT4 or FT3?

Lastly - What does your doctor think is going on?


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## chuluota

Good moring and thank you for your reply 

yes I had the antibodies test run...

March 3, 2010

antithyroglobulin Ab ..........<20 ......ref---iu/ml.....0-40

Thyroid Peroxidase (TPO) ......16....iu/ml.......ref...0-34

Triiodothyronine, Free Serum .....3.3 .....rpg/mL... ref....2.0-4.4

My heart rate is always good and blood pressure too

**************

I am following the Drs orders to the letter

She has me now on .44
which is what I am taking

that is one of the crazy things.... my labs jump in huge amounts in a matter of days ... with out me doing anything different
I think I posted how my labs changed Jan, Feb, March .... I will check and see... if not I will repost
thanks again
C

yesterday it went up high for me ..117/67 HR 75

my normal BP is around 90/60
resting HR in the 70's

This morning when I woke up ... still laying in the bed
I had 111/70 HR 96

I dont feel like i am having anxiety ... but like I said before... sometimes my body feels like it is racing around on the inside but my mind is calm...
It is so weird

Thank you again for your thoughts ... I need all the help I can get..

Blessings
Chuluota


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## chuluota

sorry ... forgot to add

I checked and I did posted earlier what she had me taking for Jan, Feb, and March and what the labs were.

also ... I looked at my older lab work from Dec 22, 2009
White Blood Count was 7.4
Today it is 3.8

I dont know what to think

Chuluota


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## Lovlkn

I think they need to be looking closer into pituitary issues such as tumors.

Your antibodies do not indicate a hypo diagnosis.

TSH is controlled by the pituitary unless Graves antibodies are present and in your case they are not.


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## Unshifted

Lovlkn said:


> Your antibodies do not indicate a hypo diagnosis.
> 
> TSH is controlled by the pituitary unless Graves antibodies are present and in your case they are not.


I don't mean to butt in but I'm wondering what you meant by what I quoted here. I was diagnosed with Hypo but my antibodies are within normal range (TPO and Antithyroglobulin AB) Does that mean it doesn't match up with a hypo diagnoses? Should I ask about looking in to a pituitary tumor or something like that?


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## GD Women

Unshifted,

I don't mean to butt in either but to clarify; We can be hypo or hyper-thyroidism with out being Hashi or Graves' and antibodies.

However, we can not be Hashi or Graves' and antibodies, without being hypo or hyper-thyroidism.

Does that clarify it for you?


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## Unshifted

GD Women said:


> Unshifted,
> 
> I don't mean to butt in either but to clarify; We can be hypo or hyper-thyroidism with out being Hashi or Graves' and antibodies.
> 
> However, we can not be Hashi or Graves' and antibodies, without being hypo or hyper-thyroidism.
> 
> Does that clarify it for you?


Oh! Okay, that makes sense. Thanks for explaining.


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## Lovlkn

Lovlkn said:


> I think they need to be looking closer into pituitary issues such as tumors.
> 
> Your antibodies do not indicate a hypo diagnosis.
> 
> TSH is controlled by the pituitary unless Graves antibodies are present and in your case they are not.


I'm adding to this original posting as I went back and read Chuluota's results again and none of her tests indicate hypothyroidism including all thyroid tests or her antibodies.


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