where do i go from here-FRUSTRATED

[ginak]

Over 2 weeks ago, I got very excited to finally have a test to come back abnormal. After 7 months of seeing 13 doctors and having a multitude of tests, I felt like I was finally on my way to receiving a diagnosis. My TSI came back elevated after I begged my endocrinologist to run just one more test. She had told me that there was no way my symptoms of (tingling, numbness in hands and feet, red/painful eyes, blurry vision, ringing in ear) were related to thyroid disease. My TSH, T3 and T4 is all normal, along with TPO and thyroid antibodies. I had day #2 of my thyroid scan and uptake and the results were 10.1% at 3.8 hours and 30% after 24 hours. I am disappointed as I think these results are normal. I was praying that an abnromal thyroid scan and uptake would at least give me some answers. I still feel like I have nothing concrete to go on at this point, though I know that there is something going on with me.

My eye is blood shot red and has floaters today. People keep asking me what is wrong with my eye. I keep telling them that I have no answers. Why would my TSI come back elevated along with my Prolactin and low Vitamin D, but the thyroid scan and uptake come back normal?

I am so frustrated...Any feedback would be appreciated at this time.

[ginak]

Yes,

As far as Epstein Barr, I have this as that was one of the first tests that my neurologist ran. However, I am going to see an LLMD on the 16th of this month. There are not very many ticks here because I live in the Southeast, but I have rashes that have been unexplainable. I have had all of the ANA type tests for Sjorgen's and all of that and all of it is negative. I was getting B-12 shots, but not sure of my B-12 levels. In September, they were all normal. I have had many tests and procedures over the last 7 months. 13 specialists and counting. I have had everything from brain and spinal MRIs, spinal tap, Evoked potential test, fully body bone scan, thyroid scan and uptake, CT scan of the adrenals, 24 hour urine, EMG/NCS, and I have had my thyroid levels checked every month. The levels that I gave you above were my levels from December. They keep decreasing, so I am not sure why at this point. I have 2 dr's appts this week and my LLMD appt on the 16th. I will keep going until I can get some answers. I will make an appt with the opthalmologist about the tear production test.

[thedeloachs]

B-12 levels. Mine were way low. Have to give myself injections regularly. Simple blood test for that too.

[thedeloachs]

Just thought of something else!! The first things my neurologist tested me for was Heavy Metals poisoning, Lymes disease and the Epstein-Barr virus. Make sure you have been tested  as some of your symptoms fit right in with these. Do you live in an area with alot of ticks?? Hmmmm will think more....

[thedeloachs]

I do not know how often they are checking your hormone levels but mine can  change dramatically within a week....coinciding with my symptoms. I went from a TSH of 0.0 to 4.1 in one week. I would be persistent about having my blood pulled regularly. My Primary Care has been pulling mine every two weeks now til I get in with this Endo in March. He wants her to have a clear picture of what is going on when I get there. With all that you have said it sure sounds like Graves. I'm assuming they have checked your ANA's, SSA's and SSB's??  Please look at Sjogren's syndrome on Yahoo Health...it describes quite a few of your symptoms and is closely tied in to Thyroid problems. I have been diagnosed with this but I believe it's only a small part of my problems. Look it up and let me know what you think...this is why I asked about the tear production test. Make your Opthamologist do it!

[ginak]

Hello,

I did a 24-hour urine a few weeks ago that was supposed to check for cortisol levels. I have no idea of what the results are at this time. Here are the rest of my results:  Thyrglobulin Qn. 14.3 and normal range 0.5-55.0
Antithryglobulin  <20  and normal range 0-40
TPO                  <10  and normal range 0-34
T4 Free             1.15 and normal range 0.6-1.6
TSH                  0.53 and normal range 0.34-5.60
TSI                   135 and normal range 0-129
Its good to know that I am not the only one who has the neurological symptoms. Again, my eye is bloodshot red. Since my TSH level is somewhat on the low side, could this be causing some of my symptoms? I certainly appreciate both of you responding to me.

[thedeloachs]

Yes my very first symptoms were Neurological. They diagnosed me with CRPS (complex regional pain syndrome) in my left arm and Poly Sensory Neuropathy both legs. I have had several abnormal Autonomic studies and abnormal Nerve conduction studies. I believe that this is all related. The neuropathy is painful. I have a wonderful PM specialist who has done 10 sympathetic nerve blocks for my arm and 3 epidurals to get the leg pain under control...I'm convinced this is all auto immune.....

[Totie]

What were your lab results on TSH, T3 & T4? Sometimes the doctors will say your labs are normal, but they could be using an out date lab reference. Sometimes you could be in the lower or higher end of normal, which would cause symtoms. Get your lab results and post them on this board, there are many on here who could explain them to you.

I had graves and unfortunately have the protruding eyes. My right one always gets dry and blood shot red, I get asked why I am crying all the time, or "what is wrong with your eye".

Protruding eyes are a symptom of graves...

[ginak]

Hello,

Yes, they were checking my adrenal glands today. My 2nd reply has the wrong date. I have been going through this since July of 2008....sorry. Do you happen to have any neurological symptoms? I do and this is the scariest part of all of this. You are very correct, my eye doctor has not checked tear production and my eyes are very dry lately. I am sorry that you had to wait 4 years of this before the doctors began tying all of this together. However, at least you are well on your way to getting better and I am glad to hear this. Every new doctor I go to seems to bring new hope, but many times, I find myself disappointed after the leaving their offices with no answers.

[thedeloachs]

Man you have been thru it! I assume they were checking your adrenals with the CT of the abdomen. The eye bulging I do not have but definately sounds like Graves
  . I hate when they don't call you with results. My new docs all do thankfully. They told me the floaters were normal too but they did a tear production test and I no longer produce tears. I'd be suprised if your opthamologist hasn't studied your tear flow already. I understand getting tired...I am too. I just developed Acute Epiglottitis and had to have emergency treatment to open my airway. I'm now on alot of steroids to maintain breathing. They said my immune system is weak so I can't fight off infections right now. Like I said it's been 4 years for me and it seems I'm just now getting on the right path to a correct diagnosis. I believe we feel these symptoms LONG before any labs really show it. Especially some one my age (25) I get the "you're too young for this" all of the time.  Good luck I really hope they find something....by the way have they tested your cortisol levels??

[ginak]

Hello,

Thank you so much for emailing me back. I have had 2 brain MRIs with emphasis on my pituitary gland. The last one was in September.I have all of the symptoms of Graves' but yet my endocrinologist will not diagnose. I had a CT scan of the abdomen and pelvis today. I doubt if it was anything there either. Since I just had the I-123 uptake today, the radiologist would not give me a CT scan with Contrast because the contrast was iodine based. The radiologist did comment on how my right eye was protruding from my left eye and how red it was. I have been going through this since July 2007 and I am just tired. I am going to see my PCP, who was the first one to tell me about the "protruding eye" in November next week. I can't wait to see her and hopefully, she can point me in the right direction. I have fired so many doctors and my endo is the next one on my last. She didn't even call me to go over my abnormal lab results with me. I thought this was inconsiderate and medically unacceptable.

You state that you have been going through this for 4 years. That is a long time. I have seen the opthamologist and my last appt was in November. He told me that the floaters were nothing to worry about. I go and see my neurologist on Monday and since I now have an elevated TSI, I am sure that he will order the CT scan of the eye. He tried to order it before, but without abnormal laboratory data, the insurance company denied it.

[thedeloachs]

Have they done an MRI of your Pituitary?? Prolactin comes from the Pituitary from what I understand. I also have floaters and blood shot DRY eyes. You need to see an eye specialist for that. Sometimes you get a diagnosis from an unexpected place. I have Sjogren's which causes the eye symptoms along with Hashimoto's and Peripheral Neuropathy. YOU will get an answer eventually. Keep trying different doctors. Find one that will listen to YOU! Only you know how you feel. I've been thru this for 4 years and 20 + doctors including Mayo clinic. I just kept firing the docs who wouldn't listen and I found some that would!! I know it *****....boy do I know. Most important thing is to find a GOOD Primary care...an advocate for you. I have been and am still Where you are at now. Please don't give up! Eventually enough tests will come back to give your doctors a more clear picture of what is going on with you!! If you need any support feel free to reach out!