Autoimmune Thyroid Disorders Suck! User Group
PLEASE HELP ME!
About This Group:

Let's face it; living with thyroid disorders (autoimmune or not) can completely suck! And nobody knows this or truly understands it unless they go through it. This group was created for those who experience the numerous trying symptoms that the thyroid/immune system can throw at us, so we can empathize with one another, and/or share a few tips and tricks to cope.

Founded by Lori575 on October 2, 2009
146 members
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PLEASE HELP ME!

Aloha ALL!
I'm new to this group and I hate to just dive right in with a question, but here goes....Sorry it's gonna be a long one :)

Family history of Hashimoto's Hypo (Mom) - Hyper (G-Ma) with Cancer.  Both cancers detected early with tumors no larger than 1.5mm after initial Hashi diagnosis.  Mom had reoccurence of Thyroid Cancer in '06 after being "C-Free" since '86.

I was diagnosed w/Hypo in 1/08 by a TSH blood test after years of suffering with unexplainable pain, fatigue, migraine headaches, my heart felt like it was racing at all times and I couldn't sleep for days at a time from the pain, etc since '05.

After my initial diagnosis w/hypo I asked my PCP on several occassions to see an Endo since my family had a history of thyroid disease.  I was told, unequivicably, "No," since they wanted to handle my med management "in-house" and could do all the adjustments needed until I got to the right dosage. SO WRONG!  They ordered the wrong tests for me!  They only ordered a TSH & at the time I didn't know any better so I didn't make waves and you're supposed to trust your docs right? Whatever!

In early June 09 a 6mm tumor was found in the rt lobe of my thyroid and I had test results all over the place...the initial ones saying I was hypo & hyper at the same time (done by a new PCP).  I had also had a DRAMATIC weight loss of 27 lbs in 2.5 weeks then a gain of 13.5lbs in 2 days, followed by another 24.5 lbs in 13 days!  That got me to an actual Endo and he's the one that found the tumor and did correct blood work, I believe anyway.  I was supposed to return for more blood testing, etc in July but failed to make my appts and have only now gotten out of my own head and will have my newest blood results on Mon.  Yeah, I know.....STUPID, right?  But I was in a severe vehicle crash in July then a close family member died 5 days later and that sort of finished me, mentally, for a while.  I just felt like I couldn't handle another thing going wrong so I told no one about my tumor or my tests. I knew it would just be too much noise and too many people talking at the same time.

My levels in June were:
THGL AB:                        <20   REFERENCE RANGE <20 IU/mL
PEROXIDASE AB:            331H (HIGH) REFERENCE RANGE <35 IU/mL
T4 FREE:                         1.2    REFERENCE RANGE 0.8-1.8ng/dl
TSH, 3RD GENERATION: <0.01L (LOW) mIU/L
T3 FREE:                         321  REFERENCE RANGE  230-420
RT LOBE TUMOR SIZE 6MM

At the time of my June tests, I was oblivious that anything was growing on/in my thyroid, now not so much.  I have a constant "tickle" in  my throat, sporadic pin-*****-like pains behind the rt clavical from the base of my neck, growing pain on upper rt side of neck near hairline & here's the weirdest thing of all...my mouth is wet but my throat is dry!....along with the other symptoms listed above at different times.  Today I was sitting looking out the window and the room just started to spin, I thought I was gonna be sick and I NEVER get motion sickness (especially if I'm NOT moving).


I suppose my question is...compared to other levels you've seen, how do these look/sound to you?  
Please lend me a hand here....I'm only 35 (soon to be 36) yrs old and I feel like I'm falling apart from the inside out!
Thank you for your time.
Respectfully,
ChelleB
1 Comment
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910435_tn?1296752210
Hi ChelleB,

I'm so sorry to hear about all that has gone on with you this past year, especially while dealing with the hormonal fluctuations that go on with your thyroid issues.  Sounds like you indeed have Hashimotos since you have the high  PEROXIDASE AB levels.  Hashimotos can definitely cause you to fluctuate between hyper/hypo which is probably why you have the weight loss/gain and all the symptoms of both, which is horrible. I have the antibodies for both Graves and Hashimotos, so I can understand how you feel.

As far as the cancer goes, I have always been told that if you do have to get cancer, the thyroid is one place you'd prefer to get it because it's usually so treatable/containable.

Have your doctors sent you for a FNAB (Fine Needle Aspiration Biopsy) or a RAIU (Radioactive Iodine Uptake scan) to check for cancer?  I didn't see you mention either test.  An Endocrinologist should order one or both of these tests to check for cancer.

Were you told that you have a goiter?  That can cause the feeling you are describing in your throat too, although so can GERD, nasal drainage, etc.

My advice is to NEVER put all your trust into a doctor.  They are human and make mistakes.  Some are better then others, etc.  And let's face it, being a doctor is their job and may not be their passion. You know how you feel and what's normal for you.  You need to be your own advocate and push, and question things when you don't agree.  If you don't feel comfortable or don't feel like your doctor is doing everything they can to get your levels right, etc., then find another.  You are the patient and that's how they get paid....don't think you are stuck with one.

Get yourself to an Endo ASAP and good luck!  If you ever want to talk or vent, I'm here, and I'd be glad to give you my email.  Hang in there!
Lori
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