Back on the rollercoaster

I spent most of today after going blonde again, running around getting tests done for my Graves Disease.

Over the past 10 days I have suspected I was going back into hyperthyroidism and my mum told me I looked like I was, after seeing me on the webcam Friday. I also have Graves Opthamology which is the eye disease, the most apparent symptom being big or protruding eyes.

So today I went to the Optician who took one look at me and said 'yep you're hyper'. Well my eyes aren't protruding yet but they are bigger and the right one more so. But it's something that is very hard to tell yourself, when you see your eyes everyday! So he took a few measurements and confirmed what we both knew already, I have slid too far.

So then off to my Dr, who drew blood and has sent it off for a full thyroid panel & TSH. These will be back tomorrow and then he will call me to increase my medications again and we will try to get me back in range. This will automatically shrink my eyes, lower my BP again and decrease the anxiety that has returned.

This is just life with Graves Disease. I was diagnosed 11 months ago and now know the warning signs of both hyper and hypothyroidism, as with this disease you swing both ways!

So unfortunately I won't be level by my 1 year anniversary, but I will at least be hopefully back in normal range. The problem as we are finding out, is how to keep me there!


Anonymous said...

I know how to stay stable - because my son did it for 3 yrs and didnt have to have blood drawn but every 4 months. What you do is take your medication until you need to decrease below 5mg (Tapazole), but instead of decreasing that med, add Synthroid - like 25mcg. This *forces* your labs to remain stable, while waiting for the antibodies to go into remission.

This is the same therapy I'm using now. I've been on meds since Dec 2006, and my antibodies are nearly gone. I'm taking only 2.5mg Tapazole with 50 mcg Synthroid. My labs don't move at all.

Anyway, just wanted to let you know about an easy way to stay on meds without having to rush for blood work all the time.

Best to you!


Sarah said...

Hi, thank you for this, I take it you both have Graves as well?

I am on PTU not Tapazole but what you are describing sounds like block and replace therapy?

If it is, I have actually asked my Dr to look into this further for me as I have read of it's success.

Nice to get a response that also doesn't say have the radiation!!

Mary said...

Sarah, I hope you and the Dr. can get your levels stabilized. I'm hypo so I just treat with Synthroid.
I'm sending positive thoughts your way.

Brandon and Julie said...

I can't really relate, as I don't even know what graves is, but I hope all goes well and you can be happy and healthy! We'll keep you in our prayers!

Karen H. said...

Good Morning Sarah,
I didn't know you had Graves Disease. I have never heard of it before. I will be praying for you to get it under control. Did yall get any of the Severe Weather yesterday or any Snow? We sure got alot of rain here. I bet we got about 4 or 5 inches of rain. We are under a Winter Weather Advisory now until noon. I'm hoping that Interstate 40 thru Oklahoma is in good shape as my hubby and his Uncle will be traveling thru there later on this afternoon and coming home for the night. It is 33 degrees here right now. Take care my friend and have a great day. May God Bless You and Yours.

Love & Hugs,
Karen H.

Anonymous said...

Hi Sara,

Yes, it's a type of block and replace, but isn't the true B&R we read about. But it works just as well.

In the true B&R, you take higher doses of PTU/Tapazole, as to totally block the thyroid. In this other therapy, you're still allowing your thyroid to function for about 2/3 rds production, and since you are on the low dose PTU, you don't have to worry as much about side effects from those meds.

In this therapy, the supplemental hormone is only a smidgen (about 25%) to make up for the little bit that is being blocked. In true B&R, you have to take a complete replacement dose (100%).

My TSI antibodies are now at 100% (were 233) and my doc is trying to tell me that I'm now in remission, even though I know I'm not there yet. (my TSH is still very low, which typically means TSHR antibodies are still involved).

I don't know how much longer he'll let me stay on this therapy, but I'd prefer to stay on ATD until my TSI antibodies were at least under 80. He seems to think it won't matter either way. (I disagree - my son is in remission 20 months now using the "TSI Less Than 80" option).

My doc is letting me stay on B&R one more month then we'll talk about what to do next. Hope my TSI are under 80 by then....

in the meantime, I'm hoping to arm myself with evidence that people should stay on ATD until the TSI are <.80 (1-1.5) (which is what my son's endo told us). But finding those resources is a challenge, as is trying to get an endo to do things differently than they're used to!

This is my third endo. My first 2 didn't know anything about the antibodies at all and my son's endo can only see kids. :(

Best of luck to you!


pamokc said...

Sarah, good luck on the tests. What do they give you to slow down your thyroid? My husband had to have his burned out because he was so hyper. At what point do they recommend this for Graves? I don't think he had the same as what you have, and mine was Hashimoto's and cancer, so that was a different animal entirely. The websites I read occasionally about thyroid recommend treating by symptoms and not by lab results, and that is working for me. Ask your doctor about Armour thyroid instead of synthroid since it is a natural product. I know people are taking it for the block/replace therapy. I will do a posting soon on what I have learned.

Vickie said...

{{HUGS}} and my prayers.

Sarah said...

Thanks for the responses, to answer your questions:

Julie - Graves Disease is an auto-immune thyroid disease that currently has no cure, although they have the gene isolated and are working on one. About 15-20% of Graves patients also have Graves Opthamology which causes the eyes to protrude when you are hyper.

Pam - I was offered the radioactive iodine treatment by my initial Endo and was even booked in for it. Then I read up about the disease and decided against it. In patients with eye disease too, the radiation can have some very nasty repercussions down the road for the eyes. Plus you just swap one problem for another, as you then are reliant on drugs forever and any cure will not be available to you. In the UK this treatment is the last treatment offered, with drug treatment and surgery preferable. I was diagnosed here but believe in being an informed patient, plus my current Dr al so does not recommend radiation for Graves.

Val - thank you for this information, I am going to print it off and discuss it with my Dr. I hear you on the Endo situation! I am in a remote area of OK and the nearest one I ended up firing as we did not get along and he was too radiation oriented. Then I struck lucky and a new Internist/MD moved in locally, who happens to have a sister with Graves. He has treated her successfully with ATD's and firmly believes he can get me into remission eventually. After I explained block and replace to him, he has been researching it for me. He is not at all adverse to patient opinions or research and believes in conservative treatments and the whole body approach. I have confidence that between us we will get there eventually and I know he will intersted in what you have posted thank you.

Sarah said...

Karen - we missed the snow totally and it just hit further east around the SE Tulsa area. So your DH should be fine travelling through. I would gladly take your 4-5 inches of rain, we are desperate for some moisture here!

Tammy said...

I hope it all works out for ya!