# thyroid flip-flop



## bcoceo85 (Mar 14, 2011)

all my life I have been hypo thyroid...always have taken synthroid.
This past yr, even tho my body says hypo....my blood test have said hyper. I have taken methimazole for the last yr and the doc has adjusted it up and down 4 times. 
I went to the doc again last week and he says the blood tests are worse now than when I first started the anti thyroid and that the meds just simply are not working.
He says I have Graves disease. He thinks I need to have my thyroid removed.
I go wed to see a surgeon to set this up.
I have symptoms of both hypo and hyper according to the research that I have been doin.
I have yellow lines across my eyes and sometims my vision is messed up and it kinds seems like Im looking thru a prism..but it dont last long.
I have weight gain that wont go away no matter what I do to lose it.
Im not sure what this surgery will do to help me...all this is really hard to understand.
Just wanted to see if anyone else is goin thru this or has been thru it and can shed some light on the subject for me


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## Andros (Aug 26, 2009)

bcoceo85 said:


> all my life I have been hypo thyroid...always have taken synthroid.
> This past yr, even tho my body says hypo....my blood test have said hyper. I have taken methimazole for the last yr and the doc has adjusted it up and down 4 times.
> I went to the doc again last week and he says the blood tests are worse now than when I first started the anti thyroid and that the meds just simply are not working.
> He says I have Graves disease. He thinks I need to have my thyroid removed.
> ...


Hi there! I am so sorry that you are so unwell. I will say upfront that the best bet is probably to go ahead and have it out. But this is a highly personal decision and you must satisfy yourself, first and foremost.

Symptoms can and do cross over. Your body even at rest is running in high gear and leaves one totally exhausted. I and many others have gained weight w/ Graves' sadly.

I strongly advise you to see a board certified ophthalmologist. Much can be done to stave of the infiltration to the eyes and they must be treated independently of the thyroid.

What tests have you had? Any of these?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

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

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

Have you had RAIU (radioactive uptake scan) to determine rate of uptake and to look for suspicions of cancer?


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## bcoceo85 (Mar 14, 2011)

I have had the RIA done and there were no nodules or cancer of any kind. I do have a goiter.
I had the following test done:
TSH - 0.005...and was told that it was low...it should be between .450-4.50
T3 uptake - 37...normal...should be between 24-39
T4 thyroxine - 9.9...normal...should be between 4.5-125.0
Free Thyroxine Index - 3.7...normal...should be between 1.2-4.9

He said that this is why I am diagnosed with Graves disease...my tsh is low but the other thryoid outputs are normal.
my antibodies are killing what thyroid hormone is being put out. He says my calcium and vd are bein effected also.
No meds that I have been on have helped...the levels are a bit worse now then they were a yr ago when I started the meds


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## Andros (Aug 26, 2009)

bcoceo85 said:


> I have had the RIA done and there were no nodules or cancer of any kind. I do have a goiter.
> I had the following test done:
> TSH - 0.005...and was told that it was low...it should be between .450-4.50
> T3 uptake - 37...normal...should be between 24-39
> ...


I am so glad you had the RAIU and that there is no cancer. Thank goodness for that. And the rate of uptake was "probably" high, hence the diagnosis of hyper as well. Did doc comment on rate of uptake?

Doc is using some outmoded tests. It would be good if you can get FREE T3 and FREE T4.

Understanding thyroid lab tests.....http://www.amarillomed.com/howto/#Thyroid

http://www.thyroid-info.com/articles/freet3woliner.htm

The antibodies are not killing the hormone, they are blocking the receptor site. Which is the thyroid. It's like a busy train station. LOL!!

I hope for you to feel better! Maybe some of us can help w/that!


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## bcoceo85 (Mar 14, 2011)

Im thinking he said the rate of uptake was high..unless Im confusing this with something else.

I have to be honest and tell u this whole thryroid thing confuses me. I will have to get a copy of my labs to tell u exactly what all he checked.

my visit today...was basically this....
the thyroid needs to come out..there is concern about the para thyroid even tho the tests show that it is doin fine. My history of calcium drops are way too many and that concerns him.

Also he said that the way things look, my thyroid is very large and wrapped around the windpipe. He says it appears the para thyroid may be embedded in there somehow and he may not be able to separate the two.

My surgery is March 31st.

He says that no meds will help me at this point and that it needs to come out


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## Andros (Aug 26, 2009)

bcoceo85 said:


> Im thinking he said the rate of uptake was high..unless Im confusing this with something else.
> 
> I have to be honest and tell u this whole thryroid thing confuses me. I will have to get a copy of my labs to tell u exactly what all he checked.
> 
> ...


I think your doctor is right and getting out soon is wise as it could just keep on growing making surgery in the distant future more difficult. I could not agree more.

And...................you are going to feel better. Plus, the gland will be sent out to pathology to give it a really good going over.

Ask your doc about planting your own parathyroid in the clavical or shoulder area. They are doing this now with wonderful results.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1235165/?page=1

I and others will be keeping you in thought and prayer for the 31st.. I know you will be glad to have this over with.

Rate of uptake high; yes..................I believe you heard correctly. That also confirms hyper.

Will you be put on Lugol's prior to surgery so you don't have a thyroxine dump?

Antihyperthyroid agent-In hyperthyroid patients, strong iodine produces rapid remission of symptoms by inhibiting the release of thyroid hormone into the circulation. The effects of strong iodine on the thyroid gland include reduction of vascularity, a firming of the glandular tissue, shrinkage of the size of individual cells, reaccumulation of colloid in the follicles, and increases in bound iodine. These actions may facilitate thyroidectomy when the medication is given prior to surgery
http://www.drugs.com/mmx/lugol-s-solution.html


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## bcoceo85 (Mar 14, 2011)

up until surgery I am taking Methamazole 5 mg one time daily....after the surgery he said I will be put on a dose of synthroid and then will do routine blood work to adjust the meds.

He is really goin to try to avoid touching or messing with the para thyroid but he says it isnt looking good.

I go for pre op appt on Wed of this week so Ill ask more questions


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## Andros (Aug 26, 2009)

bcoceo85 said:


> all my life I have been hypo thyroid...always have taken synthroid.
> This past yr, even tho my body says hypo....my blood test have said hyper. I have taken methimazole for the last yr and the doc has adjusted it up and down 4 times.
> I went to the doc again last week and he says the blood tests are worse now than when I first started the anti thyroid and that the meds just simply are not working.
> He says I have Graves disease. He thinks I need to have my thyroid removed.
> ...


Welcome to the board!









I am so sorry you have Graves'! As you can see from my siggie, I am a Graves' survivor and you will be also! Symptoms cross over. I also gained weight and so have many others.

It would be good to follow your doctors advise and I am glad he wants to do the surgery as this way, the pathologist can check for cancer also. Sometimes Graves' and cancer are found together.

Graves' and Hashi's cancer
http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

Like yourself, I was in the advanced stages and no amount of antithyroid med was helping.

Once you have the surgery, you are going to be so happy you did. You will gain the quality of your life back. This will take some time to heal as you already have been through a lot. Graves' is very very hard on the body and the psyche.

Also, have you seen a board certified ophthalmolgist? If not, it would be wise for much can be done to stave of the eye infiltration and the eyes "must" be treated independently of the thyroid.
http://www.caleyes.com/webdocuments/...ease_paper.pdf

Also, this.............
Graves' Disease Brochure
http://www.thyroid.org/patients/brochures/Graves_brochure.pdf

You are very sick and the likelihood of this getting better on antithyroid is not looking good so I do hope you take your doctor's advice. If you have the surgery, after a certain period of time, say 6 weeks, you will go get labs and most likely the doctor will start you on thyroid replacement med. He/she will start you on a low dose, you will lab about every 8 weeks and the med will be increased until you feel absolutely well. That is the protocul.

Please let us know what you decide.


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