[Llamapalooza]

in reply to: New here, have lots of questions #1074142

Christa

I have also been dealing with Grave’s for approximately 11-12 years. I went first to see a psychologist for depression shortly after moving from California to Arizona and during the time was stressed out with two young children and getting a divorce from their father. She suggested I get a "mini physical" which I went on to do. The PA I saw said he didn’t mean to alarm me but my thyroid was "twice normal size" and the whole thing snow-balled thereafter. I was consulted by an endocrinologist first off and the next thing I knew I was given two treatment options: 1) Radioactive iodine to shrink the tumor. 2) Surgical removal. After being given the risks, etc. it seemed like a no-brainer to me to pick door #1. So I went into the Nuclear Med Lab at Banner Baywood Hospital in Mesa, Az and swallowed a horse-sized pill, spent the next three days under quarantine in my apartment (I expected that I would have a bright green glow but no, that didn’t happen as I didn’t frighten the pizza guy away from my door when he was delivering a pizza!)

So the most important thing to do after that, I found, was regular and frequent visits with my endocrinologist, who was highly reputable in this area, and regular and frequent blood draws so in that first year they can control the Grave’s with medication adjustments and that worked well for me for awhile. I then began having severe migraines over the next three or four years and was seeing neurologists, GPs and whoever else i could see to try to stop the migraines which were daily and I thought about suicide being the better option than having those headaches on a daily basis.

I went back to my endocrinologist again and again complaining of the headaches and he told me there was no correlation between the Grave’s and the headaches. I then found another T-disease online forum and was astounded by the replies I got at that time about people with various thyroid disease diagnoses who had headaches and most of them KNEW it was part of the complex issues with thyroid disease. I was so livid with my endorinologist for telling me time and time again there was no correlation between the two that I fired him and never went back to him again and since then I have just let my family GP manage my meds.

But I posted the lastest findings aleady, where my thyroid function levels (and I cannot remember which, they told me my TSH was normal) are extremely elevated. I had my meds adjusted and seven (?) weeks later went back for another blood draw with the same situation, extremely elevated. I think norm is something like 0.4 and they said mine was 129. I don’t know if they meant 12.9 or actually 129 which would seem like I’d be dead or something.

So dealing with that. All I can tell you Christa is to do what your doctor says. I wouldn’t recommend any homeopathic remedies for this particular disease. You thyroid and pituitary run the show as far as your metabolism goes and really, not something I would try to handle with herbs, etc. You will need a lot of blood work over the first year so the docs can keep adjusting your meds until you reach levels which are normal. And even then, you will need adjustments from time to time. Personally, with the onset of Grave’s for me, I lost about 35 pounds but attributed it to the stress and divorce, etc. Nope, wrong!

I’m sure you’ll do fine Christa. Ask a lot of questions and get reassurance from your doctor and this forum, which by the way is just a plethora of great support and information. Good luck hon, I’m sure you will do very well.

Rochelle

[Llamapalooza]

in reply to: Grave’s Disease with possible pituitary problems #1074068

Thank you Diane for your reply. I guess the word "tumor" (while most pituitary tumors are said to be benign) is always just a scary word no matter where it is. I was looking up another condition I had when I was eight months pregnant with my first child (who will be 17 tomorrow) and am wondering about that factoring in with the current problems/symptoms. I was diagnosed with pseudo-tumor cerebrii during my eighth month. My OB/GYN was in Newport Bch so UCLA docs were consulted and I was referred to a neurologist in Newport Beach (I worked for Hoag Hospital in Newport Beach at the time). The docs at UCLA just said there was no time to do another amniocentesis but that they needed to do a STAT C-section because the situation was an impending stroke and I might not make it if they didn’t take the baby right away, which is what they did and the PTC cleared up within a couple of days, as far as the blindness went.

It had been a number of years since I researched psuedo-tumor and so I was just seeing how that might factor into the current situation as well. I know I could just drive myself MAD if I continue to self-diagnose. I spent years diagnosing symptoms of various diseases and nine out of 10 times, I was right so my self-diagnosing is probably not the best tihng I could be doing right now! What I am going to do today is call my health plan and see if they can expedite the authorization to go ahead with the MRI and just get the ball rolling and I can get a little relief of stress and not stress out for two whole weeks waiting on the authorization and going on with the MRI. AND then there’s the MRI itself which I cannot do if it’s closed (claustrophic) but that’s another problem I can easily deal with.

Anyway Dianne, thank you very much for your post and I will log in frequently. I do like this forum, it is a great place for support with thyroid diseases which in and of themselves is a lot to deal with sometimes. There is so much more to thyroid disease than the average Joe even knows about and for all of you having issues with your particular T-disease, just hang in there and persevere!

Rochelle

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