# I don't know what to think....



## sillymommy (May 1, 2014)

Good morning!

I am new to the boards, and I am writing because I just don't know what else to do. Since January, I have been feeling horrible. I have gained 40 pounds with no change to my diet, am losing hair on my head, have a goiter, exhausted, have night time waking, have dark spots on my chin and forehead, have full body swelling, and itching.

My blood test results below: *reference range in bold*

TPO-<10 *<35*

TSI- 65 *<140%*

TSH .869 *.350-5.50*

Total T3 1.370 *0.600-1.810*

T4 Free 1.00 *.89-1.76*

Thyroglobulin Antibodies <20 *<20*

I had an uptake scan and my results for the 24 hour scan were borderline hypo.

My Dr. started me on 25 mg Levothroxine a month ago. Since then I have had a tiny bit more energy, able to get out of bed in the morning and make it until late afternoon with out crashing. The last few days I have been very swollen mostly in my legs,face, arms and stomach and have felt like my skin has been so itchy. I did not have any kind of rash until this morning and now I have red bumps on the top of my back and chest.

I really could use some advice on what to even do next... I'm so tired of feeling like this...I am only 36 and feel nearly 80. At this point I wonder if its is just my thyroid causing this much trouble, or something else.

Thanks so much in advance for your support, I have never felt so alone and like I'm just fat and lazy...which I have NEVER ever been.

Sarah


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## jenny v (May 6, 2012)

Ugh, looks like you've got some antibodies at play in your system and those can make you feel pretty icky. It also sounds like you might be allergic to the Levo, so definitely give your doc a call on that one asap (and if you start to have swelling that causes you trouble breathing get to the ER).

How long ago did you do those labs? I would definitely push for Free T3 to be included in the next round because Total T3 doesn't tell you a lot about the active hormone in your body (which is Free T3) and if that's low, you can have nasty symptoms.


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## Andros (Aug 26, 2009)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

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://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Low RAIU uptake
http://journals.lww.com/nuclearmed/Abstract/1987/05000/Thyrotoxicosis_Caused_by_Functioning_Metastatic.1.aspx
(Copy and paste into your browser)

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418
(Copy and paste into your browser)

Welcome to the board. I for one would like to know more about that uptake scan. What was the percentage? Did they see any nodules or anything else unusual etc.. Can you get a copy of the report, please?

I ask because you do have TSI which indicates hyperthyroid and "sometimes" persons who have TSI and a low uptake show to have cancer.

Throwing this out there because I would be errant if I did not consider this.

Info above!

it is better to err on the side of caution. Getting a copy of that RAIU report would be most helpful.

Many of us hyper folks gained weight. Symptoms can and do cross over.

Bet you any money you have Trab.


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## sillymommy (May 1, 2014)

Thank you so much Jenny and Andros... I am sitting here with tears in my eyes because someone finally is listening to me.

I got new labs done yesterday, so hopefully I will have them tomorrow. My latest labs were from March 2014.

Jenny, I called my Dr. and she told me to stop taking the medication and to make an appt. with an Endo. I have already been to two, one who told me I was just overweight and to come back in 6 months. Another who told me my thyroid was fine. I am trying to find someone in my area that is actually helpful.

I have the scan results...

Procedure: 313 uCi I-123 was administered for thyroid uptake scan. 15 mCi of 99m technetium pertechnetate was administered for thyroid scan.

Findings: 24- hour thyroid uptake scan was equal to 11.4%. The thyroid uptake is in borderline hypothyroid range.

The right lobe of the thyroid measures 4.8 x 1.4 cm, homogeneous distribution of radio tracer was noted in the thyroid gland. No evidence of increased or decreased focal alterations were noted.

Andros- What is trab???? I am very new to all of this medical language. I looked at the link you posted but am not understanding...

Thanks so much!

Sarah


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## Andros (Aug 26, 2009)

The Trab is on the reply to you; at the top. copy and paste the link into your browser. It is the antibody that negates TSI.

Glad you are stopping the med. It may not be appropriate at this time since you may be hyper, not hypo.

Thanks for getting that report; clearly no nodules or cysts were noted but the uptake is very low so that leaves me wondering bearing in mind that I am not a doctor.

Anyway; this is a good thing about seeing the endo. Let us know when you have an appt. set up.


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## sillymommy (May 1, 2014)

Thanks so much. I got my test results back from the other day..

TSH .665

T3 Total 1.360

T4 Free 1.10

I am still waiting for the T3 Free to come back.

I read the article you posted, but I guess I just don't understand. My Dr. seems to think that since the levels are in range according to the lab everything is fine. Even though I feel horrible. She did start me on propranol due to my heart rate being in the 150's at my appt. The lowest I have recorded in the past month is 129.

I have an endo appt for May 13.

I guess until then I just deal with feeling like this...the new medication is making me even more tired. Feeling pretty hopeless today, like I am going to just feel like this forever. I used to be an active mom, who spent lots of time outside playing with my children. I honestly don't have the energy right now, even walking to the mailbox makes me want to take a nap. I have been going back and forth to Dr.'s since January and feel like Dr.'s are only willing to help if some blood test or imaging result comes back not normal. Has anyone ever found a Dr that truly listens and has been helpful? My faith in Dr's is just missing right now. I feel like I am just some customer who is paying for no answers. You know how at the grocery store the cashier just scans your item, doesn't really even look and then asks for your money??? That's how I feel like any Dr I have seen treats me...scan me, ask for money and tells me to come back in 6 months.

I'm sorry for being so down...I am beyond frustrated and just miss feeling like a person. I feel like a total blob of a person now.


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## jenny v (May 6, 2012)

Propranolol did nothing for me except make me feel like a zombie with a high heart rate. I would ask to try another beta blocker (I tried several before I found one that worked for me, Toprol XL).

Also, could you post the ranges for those labs? That will help us tell more since different labs use different ranges.


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## sillymommy (May 1, 2014)

That is how I am feeling right now like a zombie! I figured I would give it a couple of days, then call on Monday if I still feel like this...

The lab results and ranges..

* TSH Range*: *.350-5.50 results :.665*

*Total T3 Range: **0.600-1.810 results: 1.36*

*T4 Free Range **.89-1.76 results : 1.10*


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## sillymommy (May 1, 2014)

The last few days have been very rough...my heart rate has been 120-150 all the time. My entire body is very very swollen. So much so I can't wear my jeans because my abdomen is swollen and my flip flops don't even fit on my feet 

Has anyone ever dealt with this kind of swelling?


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## sillymommy (May 1, 2014)

Just got my reverse T3 levels back...19 ng/dl The reference range is 8-25 ng/dl

Any thoughts?


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