Re: A quick intro- 32 with Papillary - with a few questions...

[Guest guest]

Your other problems are most likely thyroid related.

The standard of care for thyroid cancer is TSH <0.1 permanently, unless you have cardiac issues or other difficulty tolerating suppression.

You need to have your Free T3 and Free T4 levels tested. Get copies of all tests.

A T4 only med is given with the assumption that you will convert enough to T3. Many of us do not convert very well. We often need a direct source of T3.

Your endo does not need to prescribe your thyroid meds. You only need an endo to order RAI scans or ablation. Start with your GP or internist and ask if they will order Free T3 (direct, not T3 Uptake, not Total T3, not just T3) and Free T4 (direct, not index, not Total T4, not just T4). If the Free T3 comes in below midrange, ask if they will prescribe Armour or a Cytomel plus $ynthroid combination. Most docs will not.

Or you can look for a doc known to help thyroid patients. Very few of these docs are endos. Most are in primary care, usually in an alternative/wellness/integrative/environmental/anti-aging type practice. Most take no insurance.

Look in Files for our Texas Armour Docs list for our recommended docs. Also read the Database for member reviews of docs.

If you would like to state your location, we may be able to make some specific recommendations.

>> LONG story short, it has been a rough year for me. I am Susie, 32 and a mom two 3 boys (3, 5 & 8).> > In the spring I broke out in hives that would not go away, that lead to blood tests that found an autoimmune condition where my body was attacking my thyroid(Hashi's). They found a large mass on my thyroid and did a biopsy. The biopsy came back as benign. > > They said I needed to remove my thyroid due to the size of the mass (4cm) which they did in May. The pathology report came back that it was not benign, it was Papillary Carcinoma. I already kind of figured it because when I woke up after surgery I found out she removed 10 lymph nodes as well and that was not planed. > > The day after surgery I started bleeding. Endo said it was not related and I needed to see my gyno. Gyno tried many different meds and could not get the bleeding to stop. They did a uterine biopsy because papillary cancer can also affect the uterus. They did a full hysterectomy including the cervix on July 19th. The path results were hyperplasia (pre-cancer) and adenomyosis (like endometriosis), so good but not great.> > As of right now that is all my treatment. I am being monitored with monthly blood tests while they try to get my meds to the correct level (currently on 250 synthroid) and I may have to have another surgery on my parathyroids by the end of the year because my levels are all out of whack (PTH 120s range up to 65).> > I know they want me suppressed for the first year (under .5) and at my last draw I was over 2. I am having headaches- everyday and nightmares. Any chance those are related to the thryoid? Also does anyone have a DR they just LOVE? I have been to 3 different endos and I am still looking for the 'one'.> > Susie>

[Guest guest]

Hi, Susie

Where are you ? i live in Spring,Tx and so far my Dr is good, but still keep my guard up. praying for you and hang in there it gets better.

To: Texas_Thyroid_Groups Sent: Fri, August 10, 2012 11:13:42 AMSubject: A quick intro- 32 with Papillary - with a few questions...

LONG story short, it has been a rough year for me. I am Susie, 32 and a mom two 3 boys (3, 5 & 8).In the spring I broke out in hives that would not go away, that lead to blood tests that found an autoimmune condition where my body was attacking my thyroid(Hashi's). They found a large mass on my thyroid and did a biopsy. The biopsy came back as benign. They said I needed to remove my thyroid due to the size of the mass (4cm) which they did in May. The pathology report came back that it was not benign, it was Papillary Carcinoma. I already kind of figured it because when I woke up after surgery I found out she removed 10 lymph nodes as well and that was not planed. The day after surgery I started bleeding. Endo said it was not related and I needed to see my gyno. Gyno tried many different meds and could not get the bleeding to stop. They did a uterine biopsy because papillary cancer can also affect the uterus. They did a full

hysterectomy including the cervix on July 19th. The path results were hyperplasia (pre-cancer) and adenomyosis (like endometriosis), so good but not great.As of right now that is all my treatment. I am being monitored with monthly blood tests while they try to get my meds to the correct level (currently on 250 synthroid) and I may have to have another surgery on my parathyroids by the end of the year because my levels are all out of whack (PTH 120s range up to 65).I know they want me suppressed for the first year (under .5) and at my last draw I was over 2. I am having headaches- everyday and nightmares. Any chance those are related to the thryoid? Also does anyone have a DR they just LOVE? I have been to 3 different endos and I am still looking for the 'one'.Susie