Frustratred beyond Belief

iVillage Member
Registered: 04-06-2003
Frustratred beyond Belief
6
Fri, 08-06-2004 - 3:36pm
Hello all,

This is axsai(Ona). Guess what my TSH is now up to 395 yes that is right 395. Now to get to the real point my new endo has already given up on me because she has never dealt with someone on injectable synthroid has suggested i see someone at UC. I am about just ready to do nothing cause I could care less anymore and just deal with all the other things like getting blackout spells and headaches more frequently.

If anyone has any idea what I should do? I am welcome for suggestions now mind you I have been to about every enod in cinti and northen ky and the cleveland clinic and just get the runaround because my body doesnt act the way it should.

axsai

Axsai

iVillage Member
Registered: 11-09-2001
Fri, 08-06-2004 - 5:56pm
You know, I've had you in the back of my mind since your past post. Because it doesn't make sense - that no one can get your TSH down. What was the other thing you spoke about having then? Was it something to do with your pituitary or your adrenal gland? let me see what I can find out over the weekend - I'll just look into some other resources and see what might be some options for you!! How your doctor could just give up on you is beyond understanding? What does she expect you to do? Did she have any real options for you as to what you should try next? Hugs, Cathy
iVillage Member
Registered: 04-06-2003
Fri, 08-06-2004 - 9:16pm
Hello, I have a small pitutary tumour they did the test but that came out normal.I personally still think it is something to do with my pitutary gland.Right now I am relying on prayers cause God is in control not me. axsai

Axsai

iVillage Member
Registered: 04-16-2004
Sat, 08-07-2004 - 12:29pm
Ona, I am so sorry to hear about your doctor. A doctor should be a person with enough resources to help us. I understand that they may feel that they are in a position where they feel that this is out of their league, but to leave you feeling that they are giving up on you is terrible. I am so sorry. I've found a website through Massachusetts General Hospital/Harvard that has some information on Pituatary Tumors, there are messege boards and hopefully we can do some researching and see what we come up with about a possible link between the thyroid & pituatary.

http://pituitary.mgh.harvard.edu/guest/guest.htm

Here's a listing of their endocrinologists:

Endocrinology:

Beverly M.K. Biller, M.D.

BBiller@partners.org

Physician Profile

PPD Office Info

Harvard Curriculum Vitae

Laurence Katznelson, M.D. LKatznelson1@partners.org

Physician Profile

PPD Office Info

Harvard Curriculum Vitae

Karen K. Miller, M.D KKMiller@partners.org

Physician Profile

PPD Office Info

Harvard Curriculum Vitae

Here is the site that will directly link you with the endocrine department:

http://www.massgeneral.org/depts/endocrinedivision/endocrine_home.htm

Here's something from John Hopkins, its a message board for people with pituitary issues, some with hypothyroid.

http://www.brain-tumor.com/discussion-board/thread.cfm?threadid=20&messages=482

HERE'S SOMETHING SPECIFICALLY ON THYROID!

http://www.hsc.missouri.edu/~daveg/thyroid/thy_dis.html

Seconday Hypothyroid (Hypopituitarism)

Secondary hypothyroidism is defined as the failure of the thyroid gland due to the inadequate production of Thyroid Stimulating Hormone (TSH). This can occur due to primary failure of the pituitary or as the result of hypothalamic dysfunction (tertiary hypothyroidism). Pituitary failure can result from destruction by pituitary and non-pituitary tumors, head trauma, radiation, postpartum infarction (Sheehan’s syndrome) or unknown causes (idiopathic). Generally the symptoms of hypothyroidism are less severe than in primary hypothyroidism and are often complicated by deficiencies of other pituitary hormones, as well as the mass effects of the intracranial tumor. Patients with secondary hypothyroidism must be evaluated for pituitary tumors and other hormone deficiencies.

This is all I could come up with right now. I will be thinking about your Ona.

iVillage Member
Registered: 11-09-2001
Sat, 08-07-2004 - 4:30pm
Ona - look at this article. Is it possible that this is what you have?

A TSH-secreting tumor secretes too much thyroid stimulating hormone, which then causes the thyroid gland to make too much thyroid hormone (hyperthyroidism). These tumors are very rare.

Symptoms of a TSH-secreting tumor include:

Heart palpitations

Fast heart beat

Irregular menstrual cycle

Headaches

Visual disturbances

Difficulty sleeping

More frequent bowel movements

Inability to tolerate heat

Excessive sweating

Fatigue

Weight loss

Nervousness

Treatment for a TSH-secreting tumor:

The first treatment is usually transsphenoidal microsurgery. Unless the tumor is large, surgery alone can typically provide a complete cure. If so, you will need a long follow-up period with your doctor to be sure the treatment has worked.

If surgery doesn't remove the whole tumor, octreotide is an effective medication. Radiation therapy also may be prescribed. The radiation will destroy the remaining tumor, but the process is slow. Patients also may need additional medical therapy to lower TSH levels.


Since your tsh levels are so high and you have the tumor, is it possible that this is what's causing it? But you're hypothyroid, right? Not hyper? I just wonder if your test results are thrown off by something like this, perhaps? What do you think? Cathy



iVillage Member
Registered: 11-09-2001
Sat, 08-07-2004 - 4:34pm
And check out this link for another article. It's in PDH format and I didn't want to copy it here. It's similiar to the other one but the pituitary secretes a different hormone. http://www.turk-jem.dergisi.org/pdf/pdf_TURKJEM_200.pdf Cathy :)
iVillage Member
Registered: 04-06-2003
Sat, 08-07-2004 - 7:19pm
Hi , thank you for all the links when I am more awake I will look at them all, I have been up since 300 am worked from 400 till 130 and went to a baby shower so i am running on empty,thank you all for helping me. Have a great day.

Ona

Axsai