General Medicine

» dana65 - Are you familiar with this?

Hi Elaine . . I would imagine that you have seen the following website before, so I'd like your thoughts on it, when you have time. It is:

http://www.foolproofhealth.com/Graves%20...

The first time I saw this was in an e-mail to me after my first set of labs had identified Graves Disease. Still wondering who passed that info off, since I doubt it was a coincidence.

Thanks
Dana

-- posted by dana65

» Elaine Moore - Are you familiar with this?

In response to Are you familiar with this? posted by dana65:

Hi Dana,
Someone else sent me a link to this that they received. I believe this company uses the same product for lots of different diseases and just fills in Graves' disease or whatever fits. You may have done an online search for Graves' disease and the company tracked you in that way. I'm all for companies placing ads that you can click on and check out if you're interested. But when companies go phishing like this, I avoid them.

A good nutrient-rich diet, relaxation techniques and regular light exercise will do much more for you. Best, Elaine

» u25000 - Antibody tests or not; pls advise.

Elaine: don't expect you to recall history so here's brief..1/02 preg loss-unrelated (Graves present-undiag) 1/03 new OB diag w/thyroid disorder (per many symptoms past year); 4/03 diag w/Graves a/2nd difficult to conceive m/c; chromo analysis Okay; 9/03 RAI after 2 endo's opinion; 3/04 Endo says OK TTC (tho levels dropping and not rx'd lt4,tsh was neg 01). 9/04 new OB/perin says thyroid not prob need clomid; 2/05 new endo gives ptu tho fts still dropping (tsh neg 01). Stop ptu a/3 wks itchy hives. 3/05 tsh is up, tho ft's lower; no LT4; 7/05 Endo says "okay call if problem" ; Suprisingly conceived 3rd time-no meds; age 37; 9/05 natural m/c blighted ovum; new OB refers to RE; but tsh is higher, SO FINALLY endo decides need LT4 1/06; gma dies 4/06 stop taking meds out of grief, hair loss and symptoms extreme by 10/06 retake meds do my own research to self dose; see new RE 12/06 (gives scrip for my self incrsd to 75mcg); new GP 2/07 says I'm fine @ 75mcg w/low range levels a/2 mths, but 1.6 tsh; ignored new Dr and increased to about 100; finally my ft's are hi range-tho tsh is .02; begin Infertility protocal w/clomid Mar, Apr, May brings 2 follicles each good news; but poor lining; then suggests 1 cycle FSH injections told after week of injection ft4 too hi, tho slightly, yet tsh is .04 so I'm told to decrease to 88mcg. I freaked out and stopped lt4 for one week then began 88mcg; that very week I conceived. Yay! half my TTC concerns are eliminated. YET I worried about ft's not being hi enough since I stopped 1 week; you assured me prob have enough in system to make up; I self ord lab; ft4 mid-hi range; ft3 just below range; finally RE explains to me that ft3 is not conclusive enough to measure thats why only ft4 and tsh are used. So I guess now I understand why ft3 are not used once levels have normalized. Well anyway I contemplated ordering the TSI tests (as u suggest); since Dr's don't bother, but I was probably too HI off the preg that I just hoped all was good. I developed UTI soon after conception was treated about a month later (2wks after Pos Preg test) w/Bactrim a not so reomm Antibiotic per the RE Fellow (i presumed okay per my RE). Then after a week of that went for the coincidentally timed viability U/S and it had slow HB (under 100); 1 week later confirmed no HBT. 1 week later decided to go for the Chromo analysis; since NO ONE has confirmed I have a chromo problem all this time. So Now I ask you is it too late to test ABs; should I bother w/TSI testing. My eyes started itching and developed eye pain day after D&C and it remains somewhat. Which I presumed was caused by Hi Antibodies (i tested in Jan-mod elevated).

-- posted by u25000

» Elaine Moore - Antibody tests or not; pls advise.

In response to Antibody tests or not; pls advise. posted by u25000:

Hi,
I'm so sorry to hear that you lost your baby. Ideally, you would have had a TSI in early pregnancy and then again in the 3rd trimester. Doctors sometimes think that Graves' disease is cured with RAI and fail to realize that TSI levels rise dramatically for a long time after RAI. This is why TSH stays low...the TSI falsely decrease TSH levels.
It's common for TSI levels to rise during the postpartum period, including after the termination of any pregnancy. TSI could easily have risen and could now be causing your eye problems. It would be good if you could see an ophthalmologist who specializes in Graves' disease. Best, Elaine

» nurseheatherone - New Labs! am I getting better?

In response to Newly diagnosed with Graves Disease posted by daisyelaine:

Hi Elaine! just wanted to check back to tell you about my new labs. Since I was having a bunch of weird symptoms last week I had my lbs done and here they are, just wondering if these are heading towards where I want to be after a little over 6 weeks on Tapazole.
7/25- Free T3 453, now 300,Ft4 was 2.96, now 1.15 and TSH was .0001, now 0.65
I also tested negative for celiacs disease or sensitivity my Vit D and B12 were normal.
I am thinking my thyroid is a bit inflamed and that is why I was feeling pressure in my throat and I think that was leading to my mini panic attacks that made me sort of hyperventilate. I also have been getting GERD symptoms which I rarely had before just wondering is this has any association with the disease or my body changes. I was thinking that it could possily be due to my thyroid enlarging, but I am just guessing,trying to make some sense of it all

I have an apt. with my endo for the first time tomorrow and I am hoping to discuss the continuation of ATD's with her instead of RAI, I am thinking if my labs are already changing this quickly than maybe I have a good chance of beatin gthis thing, atleast for a while.

Thanks, Heather

-- posted by nurseheatherone

» u25000 - Addtl: Refer to prev post

Elaine I hope to see Dr Putterman/chicago 3+hrs away re: Eyes. I didn't get a reply on whether I SHOULD order the TSI test; does it matter NOW; or should I just assume as you noted that antibodies increase w/preg and termination and that that is the cause for the eye issues (which have since stopped again). This is a miserable road that I hoped had ended w/the July conception; but such is life, and information is "my hope".

Do you have any other pro-active advice on eye edema? I used allergy drops to relieve itching.

Whats your feeling on the effectiveness of orbital-muscle surgery for cosmetic purpose (alignment)?

Do you have any other tips on nutrition and supplements? I take fish oil,even primrose,selenium,lysine when I remember. I did stop selenium when I saw how well my labs were from increase; should I take selenium for another reason?

Is there a place to find the BEST Dr's for all things Graves?

Again, should I bother w/the TSI labs for my health record? thks.

-- posted by u25000

» Elaine Moore - New Labs! am I getting better?

In response to New Labs! am I getting better? posted by nurseheatherone:

Hi,
Your labs are better than what's usually seen at 6 weeks and they suggest that your ATD dose is too high and needs to be reduced.
The general rule is to reduce Tapazole after around 6 weeks of being on meds or as soon as FT4 falls into the normal range. Your FT4 is falling too low and your quick rise in TSH sugggests that your thyroid hormone levels are too low for your body's needs.
Best, Elaine

» Elaine Moore - Addtl: Refer to prev post

In response to Addtl: Refer to prev post posted by u25000:

Hi,
I wouldn't bother pursuing the TSI because most everyone has a high TSI after radioiodine that persists for many years, increasing in times of stress and during pregnancy. Likely, since your eye symptoms are improving, the TSI is starting to fall.
When you become pregnant again, the goal should be to have TSI tested in early pregnancy and again in the the 3rd trimester.

You don't want to have orbital decompression if you have active TED. Normally, the changes that occur with TED resolve on their own during the resolution phase of TED. Having TED too early can interfere with the natural healing process and typically causes a need for more surgeries. Several people who had orbital decompression soon after RAI when TED was very active have now had more than 20 eye surgeries and will likely need more.
As you've noticed most symptoms will resolve on their own with time as your immune system heals. Anything you can do to help the healing process will help including the supplements you mentioned, a nutrient-rich diet, avoiding cigarette smoke, sugar, saturated fats, known or suspected allergies etc.
You want to be very careful with eye drops and avoid ones that are designed to reduce redness. They constrict blood vessels and can damage the eyes in TED. You can use artificial tears and corticosteroid eye drops.
Doctors affiliated with the University of Chicago are generally good. It pays to ask around like on some of the message boards for recommended doctors in your area. Best, Elaine

» nurseheatherone - New Labs! am I getting better?

In response to New Labs! am I getting better? posted by daisyelaine:

I did go to my endo today and she was happy with my labs and did cut my dose to half ( 5mg of Tapazole). I was very happy because she said nothing about the RAI and said that she wasnts to see if I go into remission on my own and if I relapse after I go into remission that is when she suggests alternate treatment. It sounds as though we are more on the same page than at the first apt. If my levels are too low for my bodies needs, is cutting the meds in half enough? with the rapid changes I am wondering if this is why I have had so many strange symptoms? I told my endo about my SOB and throat pressure and that I have been getting GERD symtoms every day now and never had them before, she said she could not find any reason for them except anxiety. Any info would be great!
Thanks, Heather

-- posted by nurseheatherone

» Elaine Moore - New Labs! am I getting better?

In response to New Labs! am I getting better? posted by nurseheatherone:

Hi Heather,
Yes, many of those symptoms are seen in hypothyroidism including anxiety.SOB and GERD symptoms and digestive complaints and depression and joint pain can all occur in hypoT.
I'd try 5 mg and if your next labs don't show FT4 close to the high end of the range I'd opt for 2.5 mg daily. Best, Elaine