Aa
Pituitary + Thyroid
Thank you for parsing through my question.
I have a biological family history of MEN2 and metastatic papillary thyroid cancer.
As I'm adopted, I don't have many fine details regarding this history.
I've experienced migraines and black-outs since early childhood.
In 1995, I was diagnosed with a pituitary adenoma. Symptoms leading to diagnosis included spontaneous weight gain, mood swings and increasing peripheral blindness.
At time of Dx, my neurologist opted to leave the adenoma in situ, due to proximity to the optic nerve. Spontaneous growth seemed to have abated and symptoms, including blindness, were slowly adjusting.
In May 2009, I experienced recurrent pituitary symptoms, with indications of hypothyroid (exhaustion/rapid weight gain). Blood tests did not show pituitary or thyroid abnormality, although T4=.05. However, adrenal/cortisol numbers were below normal and my white count was first far below normal, then on re-test, too high. My PCP ultimately decided symptoms were from onset of middle age/perimenopause (I'm 39).
July 2009, found left thyroid nodule. At the FNA last week, it was a 2.3 cm, hard, fixed mass containing no fluid. FNA results came back "inconclusive but suspicious", and I'm moving toward surgery with an ENT. The endocrinologist covered by my insurance cannot see me until the end of October.
My concern is that the nodule doesn't explain the blindness, which increases daily and is very troubling. The similarity to 1995 is alarming.
I'm concerned removing the thyroid nodule addresses one symptom of an underlying problem. I know the pituitary can't cause thyroid nodules, but the timing is so supicious. I'm afraid to pursue treatment of one without knowing how it relates to all.
I've tested for diabetes due to sudden recent weight gain, but have no blood test or other indicators (aside from blindness) to pursue that Dx.
My PCP says it's out of her depth, and the ENT also doesn't know what to think about the blindness. I'm starting down the neurological testing path, which will look at the pituitary, but not the thyroid.
I'm sure, given time, I will find out what is going on, but waiting is difficult and I greatly appreciate your input.
I have a biological family history of MEN2 and metastatic papillary thyroid cancer.
As I'm adopted, I don't have many fine details regarding this history.
I've experienced migraines and black-outs since early childhood.
In 1995, I was diagnosed with a pituitary adenoma. Symptoms leading to diagnosis included spontaneous weight gain, mood swings and increasing peripheral blindness.
At time of Dx, my neurologist opted to leave the adenoma in situ, due to proximity to the optic nerve. Spontaneous growth seemed to have abated and symptoms, including blindness, were slowly adjusting.
In May 2009, I experienced recurrent pituitary symptoms, with indications of hypothyroid (exhaustion/rapid weight gain). Blood tests did not show pituitary or thyroid abnormality, although T4=.05. However, adrenal/cortisol numbers were below normal and my white count was first far below normal, then on re-test, too high. My PCP ultimately decided symptoms were from onset of middle age/perimenopause (I'm 39).
July 2009, found left thyroid nodule. At the FNA last week, it was a 2.3 cm, hard, fixed mass containing no fluid. FNA results came back "inconclusive but suspicious", and I'm moving toward surgery with an ENT. The endocrinologist covered by my insurance cannot see me until the end of October.
My concern is that the nodule doesn't explain the blindness, which increases daily and is very troubling. The similarity to 1995 is alarming.
I'm concerned removing the thyroid nodule addresses one symptom of an underlying problem. I know the pituitary can't cause thyroid nodules, but the timing is so supicious. I'm afraid to pursue treatment of one without knowing how it relates to all.
I've tested for diabetes due to sudden recent weight gain, but have no blood test or other indicators (aside from blindness) to pursue that Dx.
My PCP says it's out of her depth, and the ENT also doesn't know what to think about the blindness. I'm starting down the neurological testing path, which will look at the pituitary, but not the thyroid.
I'm sure, given time, I will find out what is going on, but waiting is difficult and I greatly appreciate your input.
Ask your doc for the DNA tests for MEN2 so they are covered my insurance. Otherwise you don't really *have* the diagnosis. You can get the testing yourself, but each test costs about 1 thousand each.
Hashimoto's can also be detected in blood tests, so why a biopsy? Why not the titers?
That is good news about your optic nerve.
Hashimoto's can also be detected in blood tests, so why a biopsy? Why not the titers?
That is good news about your optic nerve.
I've never taken the DNA test - although I took a kerjillion blood tests in 1995, so I suppose it's possible I was tested for known markers of certain genetic diseases at that time. I didn't know my biological family history then...hum.
I feel like the science has changed a lot in 14 years.
I had an opthalmologic check-up today. His theory is that the white count fluxuation indicates that I'm fighting an infection (or thyroid cancer), and that the immunologic response may have also affected my eye muscles, which are inflamed and weak. He strongly suggested I have them look for Hashimoto's.
My inconclusive recent biopsy didn't show evidence of Hashimoto's, however.
The good news is that there is no sign of optic nerve distress, so it almost certainly is NOT the pituitary adenoma (since it rests right on those nerves). I go for a CT scan next week to look for metastasis...and then will schedule the thyroid surgery following that.
I feel like the science has changed a lot in 14 years.
I had an opthalmologic check-up today. His theory is that the white count fluxuation indicates that I'm fighting an infection (or thyroid cancer), and that the immunologic response may have also affected my eye muscles, which are inflamed and weak. He strongly suggested I have them look for Hashimoto's.
My inconclusive recent biopsy didn't show evidence of Hashimoto's, however.
The good news is that there is no sign of optic nerve distress, so it almost certainly is NOT the pituitary adenoma (since it rests right on those nerves). I go for a CT scan next week to look for metastasis...and then will schedule the thyroid surgery following that.
Did you take the DNA test for MEN2 and confirm that you have it?
You may be able to get care at NIH if you meet some of the criteria of one of the clinical trials there, and they pay for the treatment.
As far as I know, the pit does not cause the thyroid nodules, but with your history, one thing can lead to another. I also had a pit tumor (2) and several thyroid nodules.
As for leaving the pit tumor there, that is probably the worst advice... I got similar advice when my tumor was found. They can debulk the tumor and an experienced tumor can remove a lot without doing further damage and then protocol would often be to do some radiation to prevent the tumor from growing more. I would get another opinion.
As for your other symptoms, that is from your tumor growing and you getting more symptoms. Sounds like you are getting Cushing's disease, which can be really bad in of itself. That is what I had.
You are correct to look at the pituitary at this time.
You may be able to get care at NIH if you meet some of the criteria of one of the clinical trials there, and they pay for the treatment.
As far as I know, the pit does not cause the thyroid nodules, but with your history, one thing can lead to another. I also had a pit tumor (2) and several thyroid nodules.
As for leaving the pit tumor there, that is probably the worst advice... I got similar advice when my tumor was found. They can debulk the tumor and an experienced tumor can remove a lot without doing further damage and then protocol would often be to do some radiation to prevent the tumor from growing more. I would get another opinion.
As for your other symptoms, that is from your tumor growing and you getting more symptoms. Sounds like you are getting Cushing's disease, which can be really bad in of itself. That is what I had.
You are correct to look at the pituitary at this time.
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