# Likelihood of thyroid disease with "normal" TSH?



## AddyNat (Apr 4, 2013)

Hello, all!
I'm hoping those of you with more experience can give me some advice or point me in the right direction. I've been dealing with a variety of health issues and after doing some research, I think it's very possible that I have Hashimoto's or Grave's including Thyroid Eye Disease. My eye issue is what's really motivating me to get a quick diagnosis as I have a long history of other eye problems and leaving anything untreated could be disastrous for me.
My TSH was tested in Jan. and Mar. by my GP (I recently moved, so I'm new to her practice. Frankly, she's been exceptionally dismissive. ) and they came back in the "normal" range. In Jan. it was 3.84 uIL/mL and in Mar. it was 2.91. The range was 0.27-4.2.
I previously had abnormal TSH levels, once after a miscarriage in 2009 and again in 2012. The 2009 incidence was chalked up to the miscarriage and was normal when re-tested. In 2012, I found out I had two herniated discs that were severely compressing my spinal cord and my then GP thought my TSH may be related to my spinal cord damage and wanted to wait until after my surgery to re-test.
The bulk of my symptoms started in 2011, when I was 3mo. postpartum with my younger daughter. I developed a terrible rash on my shins. I was having heart palpitations and breathing issues. Stomach issues that led me to have a colonoscopy which yielded nothing. Since my older daughter is gluten and soy sensitive, I decided to try going gluten and soy free to see if it helped. It took nearly a year for the rash to go away, but everything calmed down quite a bit.
Until this past Christmas. I was hit with blurry vision (like looking through a piece of scotch tape), a massive amount of floaters, and extreme light sensitivity. I spent Christmas day at a major eye hospital making sure I wasn't having a retinal detachment. They couldn't find any new problems and I've been to a corneal specialist once and a retina specialist twice since then and still haven't gotten a dx other than dry eye. Next stop is a neuro-ophthalmologist, but I couldn't get an appt. until June! 
Meanwhile, this blurry vision is coming and going every week or so and the heart palpitations and breathing issues are coming full force. Also in Dec., my period started changing, becoming very light (1st time ever and I was happy until I realized it could be a problem!) My neck is uncomfortable and I can't really bend my head back and breathe or swallow comfortably. I've had hair loss and night sweats on/off for a long time. I also have become heat sensitive where when I get warm, I'll start sweating. And when I'm not warm and sweaty, I'm abnormally cold! Also, I've always been a worrier, but the tension and anxiety I'm experiencing is ridiculous! If I'm watching a suspenseful movie, it kickstarts my palpitations. Last but not least, I'm having some numbness and tingling in my hands and feet.
So, because of my recent spinal surgery in my neck and because of unusual congenital eye physiology I'm having trouble getting anyone to put all my symtoms together. My mom has MS and is also hypo. Two cousins are also hypo and one is recently diagnosed with Grave's. I know some of these symptoms are also associated with MS, but the brain MRI I had last year didn't show any lesions, so I think MS may be less likely than thyroid disease.
I was able to convince my GP to refer me to an endocrinologist and have an appt. next month. What should I be asking? Has anyone had TED with optic neuropathy, but not bulging eyes?
Thank you for listening to my long, crazy story and for any help!


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## Prudence (Oct 30, 2012)

Try to see if the endo will run an antibody test for you-it's possible for your TSH to run in a "normal" range, but still have anti-bodies causing problems. I was finally diagnosed with Graves' after months and months (and months) of having "just over" the lab high for TSH, but uptake and scans showed severe over-activity going on in there. It happens! Also, have you had any other thyroid labs done? T3 or T4?


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## Andros (Aug 26, 2009)

AddyNat said:


> Hello, all!
> I'm hoping those of you with more experience can give me some advice or point me in the right direction. I've been dealing with a variety of health issues and after doing some research, I think it's very possible that I have Hashimoto's or Grave's including Thyroid Eye Disease. My eye issue is what's really motivating me to get a quick diagnosis as I have a long history of other eye problems and leaving anything untreated could be disastrous for me.
> My TSH was tested in Jan. and Mar. by my GP (I recently moved, so I'm new to her practice. Frankly, she's been exceptionally dismissive. ) and they came back in the "normal" range. In Jan. it was 3.84 uIL/mL and in Mar. it was 2.91. The range was 0.27-4.2.
> I previously had abnormal TSH levels, once after a miscarriage in 2009 and again in 2012. The 2009 incidence was chalked up to the miscarriage and was normal when re-tested. In 2012, I found out I had two herniated discs that were severely compressing my spinal cord and my then GP thought my TSH may be related to my spinal cord damage and wanted to wait until after my surgery to re-test.
> ...


Oh, dear!! You need some serious thyroid tests; not just the TSH.

There are binding, blocking and stimulating antibodies and in the list below, if you have TSI and/or Trab, you are probably having TED/GED (thyroid eye or Graves' eye disease.)

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

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.

Negative test results means that the autoantibodies are not present in the blood at the time of testing and may indicate that symptoms are due to a cause other than autoimmune. However, a certain percentage of people who have autoimmune thyroid disease do not have autoantibodies. If it is suspected that the autoantibodies may develop over time, as may happen with some autoimmune disorders, then repeat testing may be done at a later date.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and 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/

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/

You really really need to see a Board Certified Ophthalmologist who has experience w/TED. You do have the symptoms.


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## AddyNat (Apr 4, 2013)

Thank you both! Prudence, they didn't check my T4. My doc sent me for a TSHreflex. From what I understand, if the TSH is abnormal it'll kick back and do a T3 and T4. My GP told me she didn't feel it was necessary to run any other tests, but she did give me the referral for the endo. Andros, great info! I'm seeing my retina specialist this week and I'll see if she can get me into the neuro-ophtalmologist sooner than June. Fortunately, my retina doc has been very understanding and helpful. Maybe the n-o will be able to give me a dx? Fingers crossed!


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## Andros (Aug 26, 2009)

AddyNat said:


> Thank you both! Prudence, they didn't check my T4. My doc sent me for a TSHreflex. From what I understand, if the TSH is abnormal it'll kick back and do a T3 and T4. My GP told me she didn't feel it was necessary to run any other tests, but she did give me the referral for the endo. Andros, great info! I'm seeing my retina specialist this week and I'll see if she can get me into the neuro-ophtalmologist sooner than June. Fortunately, my retina doc has been very understanding and helpful. Maybe the n-o will be able to give me a dx? Fingers crossed!


This doctor should recognize thyroid eye disease. Please us know if you get in to see the neuro-ophthalmologist. I am hoping that you do.


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## AddyNat (Apr 4, 2013)

So, it's taken a while, but here's an update...
I was finally able to see the neuro-ophtalmalogist and thankfully he did not see any evidence of TED or optic nerve damage. He thinks that I have dry eye syndrome and recommended a different corneal specialist than the one I originally saw, who can hopefully pinpoint a reason for the dry eye. It may be from thyroid dysfunction or it could be from past eye surgeries, etc. :confused0031: 
I also finally got an appointment with an endocrinologist! These are the test results I received:
TSH 2.19 (.35-5.5)
Total T3 91 (80-200)
FT4 .93 (.89-1.76)

Thyroglobulin Antibodies 195 (<60)
Thyroglobulin 49.2 (<60)
Anti-TPO >6500 (<60) :scared0015:

The doctor's results letter said that I have an autoimmune thyroid disease, but since my thyroid function is in the normal limits, no action is required other than yearly testing. She didn't specify Hashimoto's in the letter, but did indicate when she palpitated my thyroid in the exam that it felt indicative of Hashimoto's.
Is such a high TPO typical? Fortunately, I am finally feeling better than I have been, but I spent the first four months of this year really sick. I'm still feeling frustrated because I would like some kind of contingency plan from the doctor. If I start getting really sick again, I don't want to have to chase every doctor in the area down to get some help.
Any thoughts are appreciated! Thanks for listening!!


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## joplin1975 (Jul 21, 2011)

No, that's pretty darn exceptional...the TPO, I mean. And, with that thyroglobulin number, you really need an ultrasound. I'm not sure your doctor is doing right by you, quite frankly.


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## AddyNat (Apr 4, 2013)

Hmmm... I was wondering about why she didn't suggest an ultrasound. As it so happens, I told my sister about all the symptoms I was having and that I thought I might have thyroid issues. She has been having similar issues so I suggested she go to her doctor (we live a few states apart). Her primary thought her symptoms and exam warranted a ultrasound and they found several large nodules. She has to now see an endo and perhaps have a biopsy? I think I'm going to call my endocrinologist, mention my sister's issues and see if I should have any further testing or maybe start a low dose of thyroid replacement as I've heard that it can slow down the progression of Hashimoto's?


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## Lovlkn (Dec 20, 2009)

> TSH 2.19 (.35-5.5)
> Total T3 91 (80-200)
> FT4 .93 (.89-1.76)
> 
> ...


Yes... your TPO's are quite impressive and possibly the highest I have seen.

I had an episode of what they called Optic Neuritis - blurred vision for a few weeks on one eye. I attributed it to heavy fertilizer use and getting it on my legs - they said possible MS but we never did a spinal to find out and 20 years later I just have thyroid disease.

I also had hives right before i was officially dx'd with Graves disease - I think my immune system went wild and all of a sudden I developed a huge amt of allergies. Today I have cat, dog and dust allergy only, I say only - considering I used to be allergic almonds, pecans, several other foods and trees and grass.

You sure sound hypo and your labs confirm hypo - I cannot believe your Endo did not start you on replacement meds. I think your next step might be finding a GP who will treat you. It may take visits to several and maybe you can ask around and find out who some hypo people use. I for one do not think much of endo's and find they are the worst when it comes to treating by TSH alone.


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## AddyNat (Apr 4, 2013)

Ugh! So frustrated again! I sent the endo an email with my concerns and this is how it went:

• Should I have a thyroid ultrasound? My sister and mother recently had ultrasounds and both had large nodules (> 1.5) that their doctors are doing biopsies on. Is this a concern in my situation?

I did not feel any nodules on your thyroid. I don't think it is necessary yet. But if you insist, you could ask your PCP to order one.

•Should I have my TSI levels tested? Is it possible to have both Grave's and Hashimoto's or Hashitoxicosis? I'm concerned about the episodes of heart palpitations, breathing problems, anxiety and other hyper- like symptoms that I have.

NO reason to check TSI. TSI is NOt related to your symptoms.

•While researching thyroid autoimmune disease, I found studies that found that taking thyroid replacement medication even when a patient's TSH was within normal range helped slow down the progression of the disease and helped the patient to feel better (less fatigue, hair loss, etc.)

NO indication at all to start any thyroid replacement

•My Anti-TPO results were >6500. This seems extremely high. Should I be concerned about any other diseases or conditions?

You have slightly higher risk of developing other autoimmune disease. Pls follow up with your PCP to monitor.

 So, in other words, "Don't bother me. Bother your PCP." 
The PCP who didn't want to send me to an endo to begin with. Sigh.

I guess I'll be hunting for a new PCP.
Thanks for letting me vent!


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## abymom99 (Apr 15, 2013)

What a terrible response from your endo! Sounds like you'll need to find a new one. Good ones are so few and far between it seems! 

I'm not going to post my whole story here, but just wanted to say that I'm in a very similar boat to you and have been to a neurologist, GI, cardiologist, endocrinologist and ophthalmologist. I still have no answer from anyone either. I have been confirmed with mitral valve prolapse and GERD though, but they still don't explain a lot of my neurological symptoms. My endo is completely useless so I tried moving on to an ENT but can tell she has her doubts as well. I'm waiting to get my results from my TPO antibodies as I begged to have it retested, since it was high in 2009 and I want to see how much higher it's gotten. If I continue to progress like I am, I will be finding someone that specializes (as much as that's possible) in Hashimoto's encephalopathy because that is where I feel I'm headed (if not already there). I have other symptoms but the fluctuating blurred vision with nystagmus and flashing lights in darkness are my daily eye symptoms. The ophthalmologist said he thinks I have "accommodation spasm" which causes false near-sightedness/fluctuations, but said it's extremely rare so I could tell he wasn't sure. I often have a hard time seeing myself in the mirror, but my prescription hasn't changed and is considered very mild at -1.5. At least you've already seen a neuro-ophthalmologist which was a great start for the vision issues. No sign of Grave's eye involvement for me either by the way.

Anyways, I just wanted to wish you luck in your search for an answer and encourage you to keep asking questions. You've found a great group here that is very supportive. I think it's about the only thing that has helped keep me sane over these past couple of months!


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## Octavia (Aug 1, 2011)

LindyLou, it sounds like you and your GP have a good "partnership" and that can go a long way! Good for you!


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## Andros (Aug 26, 2009)

AddyNat said:


> Hmmm... I was wondering about why she didn't suggest an ultrasound. As it so happens, I told my sister about all the symptoms I was having and that I thought I might have thyroid issues. She has been having similar issues so I suggested she go to her doctor (we live a few states apart). Her primary thought her symptoms and exam warranted a ultrasound and they found several large nodules. She has to now see an endo and perhaps have a biopsy? I think I'm going to call my endocrinologist, mention my sister's issues and see if I should have any further testing or maybe start a low dose of thyroid replacement as I've heard that it can slow down the progression of Hashimoto's?


I agree w/Joplin! These high numbers can also be suggestive of cancer. You absolutely need an ultra-sound.

And......................your FT4 is in the basement. Hope you can find a better doc. Keeping you in my thoughts and prayers for all of this.


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## AddyNat (Apr 4, 2013)

Thank you all for your replies and encouragement! This really is a supportive community! I do have an appointment set up with a new PCP and they have an endocrinologist within their practice as well, so fingers crossed that they are willing to go the distance with me...

LindyLou, I did some research on parathyroid disease when you mentioned it in another post and I think I will ask about that as well at my visit. From what I understand, it depletes your calcium and may damage your bones? Does it affect your teeth as well?

Andros, what would a low FT4 be indicative of? Thyroid cancer as well?

I would just love some kind of resolution at this point. With two small daughters at home, I just don't have the time or patience to be a professional patient! lol


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