Any input would help...

[KD9ER]

Sorry this is a bit long and a little out of order, but here it is in all it's glory...My Medical History.  I think I might be on the right track with Thyroid, but are there any other issues???

Quick History:
As a child I was thin, had a hard time putting on weight and ate round the clock.  My biggest issues were Chickenpox at age 6 which I almost died from being there were too many on my little body (some were stacked 3 high, and I had them everywhere...even in the no-sunshine areas and internally) and the occasional sinus infection.
About 5 years ago I came down with Mono and was fully recovered within 3 months of getting it (2003).  A year later I moved to Hawaii and had rampid problems with MRSA to the point of having to quit school as it was endangering my life to continue going to campus.  By Spring 2005, I was having swallowing issues and it was then doctors realized I had a cyst and nodule in the right lobe of my thyroid.  June/July 2005, I ended up in the ER several times for unknown causes.  I was shaking/convulsing, had cold sweats, extremeties felt like they were asleep (pins and needles feeling), every muscle in my body ached like I'd run a marathon...all this was summed up by the ER as Viral.  Although my bloodwork came back absolutely normal.  NO elevations in the white cell count.  I was re-referred to the Endocrinologist.  He suggested that even though my levels were in the normal range he wanted to follow my condition.  So a few biopsies (all normal) and ultrasound's later...he noted I was Hypothyroid (based on symptoms and comprehensive medical history of symptoms) even though the lab work would suggest otherwise.  He also said he suspected Addison's based off of the ER visits and other long-term complaints made throughout my life found in my medical record.  He ended up retireing a year later before we really delved into finding out whether he was right about Addison's or not.  My current doctors and Endocrinologist won't even call my case Hypothyroid as they are "by the book" doctors and won't consider symptoms.  We are now battling infertility (PCOS).  

I need help.  I am at my wits end with doctors and especially the ones who when I walk in the door they know more about what my body is feeling than me (apparently).  They turn off their ears, look at my labs, and tell me my educated brain is not right in its conclusions.  Yes, if I seem a bit jaded it's because I am.  4 years of dealing with doctor's who won't listen, being referred to every doctor under the sun, and still no help.  I have a 19mo old and I can barely function during the day let alone try to keep up with my very energetic child.  I need a doctor who is willing to help me and listen to me.  I need the whole thyroid issue put to rest once and for all.  

Any suggestions/comments/or even questions would help greatly!

LABS:  (TSH Norm Range for Lab: 0.35-5.10)

May.14.2005     TSH     2.351
May.17.2005     Sodium     139
                        Potass      4.3
                        Cortisol(am)     10.0
Jun.15.2005      TSH     2.647
                        FT4     1.1
Jul.12.2005       TSH     1.439
Aug.09.2005     Cortisol(am)     17.9
Oct.04.2005     TSH     2.485
                       FT4     1.0
                       Glucose     91
                       Sodium      140
                       Potass       3.6
                       Calcium     10.0
Dec.06.2005     TSH     0.916
                        FT4      1.1
Apr.28.2006      TSH      1.455
                        FT4      1.0
                        Glucose     88
                        Sodium      140
                        Potass       4.1
                        Calcium     10.0
May.01.2006     Glucose     77
                        Sodium      139
                        Potass       4.0
                        Calcium     9.5
Jan.27.2007      TSH     1.421
May.04.2007     Glucose     99
                        Sodium      139
                        Potass       3.9
                        Calcium     9.8
Jun.26.2007      TSH     1.797
                        FT4      1.2
Feb.22.2008     TSH      1.471

CYST:  4.2 x 1.7 x 3.2cm
NODULE:  1.4 x 1.2 x 0.7cm

- Free T3 (June 26, 2007) Result: 4.3 pg/mL  (our lab range: 2.3-4.2).  
- Cortisol were all fasting and all in the AM before 9am...both were taken around 8:30am.  Both measured by ug/dL.
- Gliadin IGA June.26.07 @ 310pm: 8 units
- Gliadin IGG June.26.07 @ 310pm: 1 unit
- Protoporphy June.26.07 @ 310pm: 41 ug/dL
- Thyroid PER Jul.12.05 @ 1129am:  0.08 Index  (lab range: 0-.79)
- Phosphorus Oct.04.05 @ 0735am: 4.6 mg/dL
- Alk Phos May.17.05 @ 0953am: 17 U/L


No results for the following:
-ACTH
-DHEA
-ANA
-Auto Immune
-Globulins
-TSI
-FSH
-Vit B
-Saliva
The Aug.09.05 Cortisol test was a fasting test done in the am at 0830.  There were no other tests that day.  No estrogen...birth control...etc.  I changed nothing in my routine.  


I have felt the lump in the throat feeling since March 2005...I went in to the docs because of swallowing issues.  They said it was the cyst causing the feeling but it never went away, it only felt a little less obvious after they drained it.  I had the cyst drained 5 times over a year.  The final time (Mar 2006) the cyst was mostly solid...no fluid to pull out even with the 23 gague needle.  I've had FNA's done pretty much annually since 05.  The last was earlier this year.  All come back normal no "hot" or active nodule indications.  The lump in the throat issue is why I want the Right lobe out.  If I have a shirt on with collar I feel like I'm being strangled!  I hate it!  My husband can't even touch my throat because I feel like anything touching it sparks that feeling.  I have even stopped wearing my necklaces.  I get pangs of pain at least once a day.  I haven't found any pattern to it.  Most of the time I'm sitting still with my head facing forward...???  My Endo said it was the nodule causing the pain.  Is she wrong???  Or could she be wrong?

My lab tests for my HcG are never right.  I was 12 weeks pregnant with my son when the blood and urine finally popped positive.  They'd done weekly tests from mid March 06 until it popped on May.01.06!  When they did the ultrasound there was the hearbeat, and a fetus at 12 weeks!  Since my son, I've miscarried 3 times.  I was on the IUD (Mirena) and it pushed my body into hyper-drive for producing fertile eggs.  The first time I miscarried I was not even 8 weeks.  The second time I was 11 weeks.  There were 3 definate embryo sacs and 2 more possible.  The third time was cause of them taking the IUD out at 5 weeks.  I know the IUD was what caused the miscarriages, but the hormone from the IUD is what caused my body to act as if it were on Clomid!  I was on the IUD from March 2007 to January 2008.  
The fact that my pregnancy hormones are off this far only furthers my belief that other hormones are out of whack.  But the doctors deny this.  They just switch my due date to reflect a 6 week positive pregnancy test and tell me I'm not as far along as I thought.  Thanks to them my son was 3 weeks over due (21 days exactly) and I abrupted after 1 month of 2 minute contractions all day, every day.  I was walking, talking, and joking through the contractions so they were not the "real" thing according to the OBs.  Even after abruption they made me push him out!!!  This is the level of docs I'm working with.  

As far as age, I am only 24.  I know this plays a huge role in why they are not taking me seriously.  A lot of my docs believe you can't have problems like this at this age


Thanks!
-KD9ER

[KD9ER]

I'm currently seeing an Internal Meds doc to straighten out these issues.  The PCOS is something I haven't really come to terms with.  The only basis for this diagnosis so far is that my right ovary had multiple small cysts on it and a cycle that came every other month.  So I'm not convinced.  I've done research on it and I just don't feel that it's the right diagnosis.  Although I'm not ruling it out, but I'd like more proof than 2 symptoms.

I do have most of the symptoms for Hypothyroidism, but for some reason the labs are normal.  Trouble is doctors today don't treat symptoms, they only treat lab results.  This was certainly proven when I was pregnant.  

I guess I'm just tired of being at my wits end.  I'm tired of the Primary Care docs just diagnosing me with the "bug of the week" and then dismissing all the obvious symptoms.  I need a doctor who will be my advocate and not part of the problem.

Thank you for the help.
-K

[Dr. Kokil Mathur]

Hi
Thanks for writing to the forum!


It is possible to have a normal pregnancy but very low HCG levels. Please read through this link to help you understand your pregnancy better: http://www.americanpregnancy.org/duringpregnancy/hcglevels.html

Since you have PCOS, it is quite possible that the periods were irregular. Also you could be having this problem long before it was detected.

I am sure your blood sugar must have been tested for diabetes. If not, this should be done. High blood sugar levels can also cause listlessness, loss of energy etc. There could be associated low prolactin levels too.

A thyroid cyst is treated either by excision (if cancerous) or by draining and watching it if non-cancerous. Increased sensitivity in the area is possible due to increased blood flow. You can read through this link: http://www.thyroid.org/patients/brochures/Nodules_brochure.pdf

The hormone values appear to be normal. Do not think there is a hypothyroid state. However you must get all your endocrine hormones tested


It is difficult to comment beyond this at this stage. Please discuss this with your doctor and see what he thinks about it. Please let me know if there is any thing else and do keep me posted. Take care!