[LaurelM]

in reply to: Any book suggestions? #1178466

Hi Flora,

Off of the main web page (not the Forum) in the upper right hand corner box is a menu option title About. You can access a reading list for patients and another reading list for physicians if you want something more techinical.

http://www.gdatf.org/about/about-graves-disease/reading-list-for-patients/

Hope this helps,

Laurel

[LaurelM]

in reply to: Heart palpitations #1178337

If you really want something technical to read (or to help put you to sleep), the American Heart Association Journal has an interesting article regarding thyroid and the heart. Both hyper and hypo cause heart symptoms. One of the things it mentions is that there is a higher incidence of mitral valve prolapse with auto-immune thyroid disorders (both hyper & hypo).

http://circ.ahajournals.org/content/116/15/1725.full

ZZZZZZZZZZZZ……*snork* Goodnight.

[LaurelM]

in reply to: Anyone else experience all this, or am i just a baby? #1177789

Hi MollyP,

I have to disagree somewhat with Harpy. If your thyroid is producing an inconsistant amount of thyroid hormone, it can be more difficult to manage on and ATD than removing the thyroid and providing replacement at the right consistant dose. Granted, it may take some amount of time to determine the correct dose of replacement and it may require some tweaks over time.

Also, if you are unable to acheive remission on ATD, then you will have to stay on it long term (like Kimberly the facilitator). So, you are still required to take a daily medication. Harpy’s statement about traveling and not being able to get your medication seems strange to me. Replacement thyroid is a much more common medication than the ATDs. In fact, my pharmacy has trouble stocking my PTU. They consistently have to only partially fill my prescription or combine multiple manufacturers and I live in a major metropolitan area. And, there is more risk of serious side effects from an ATD than from replacment hormone (filler/dye reactions).

I think another assumption that was made is that because there are a number of other thyroid board where people are not feeling their best is that a high percentage of patients do not do well on replacement. Of the 4 people that I know (2 with RAI treated GD, one with Hashi, and one treated for thyroid cancer with RAI & TT) none of them have had any issues with getting their replacement regulated and never visit online forums.

I always take comfort especially from my friend who had thyroid cancer in her mid-20s. She had RAI at a much, much higher dose than GD patients receive after her TT. She was required to stay in a special radiation room at the hospital for several days. (GD patients get to go home the same day.) They had to make absolutely sure that there was zero thyroid tissue left in her body. She is now almost 40. She has never had any weight issues and has a darling and healthy 5 year old.

There are risks with RAI and TT. RAI can worsen eye involement (steroid may help with this risk) and it occasionally has to be repeated. It also takes longer as the tyroid tissue dies off to regulate a replacement dose. TT has the usual sugical risks but having an experience surgeon helps mitigate the risks.

I was originally treated with Methimazole about 7 years ago and experienced a 6 year remission. I came out of remission and have been on PTU for about a year.

Take your time to consider all your options.

Take care,

Laurel

[LaurelM]

in reply to: Dose increased yesterday/feeling worse today (?) #1178262

Hi Flora,

I always seem to have an adjustment period to a new dose of about 7-14 days even if the change is in the right direction. I swear it is like my body senses that ‘change’ is happening and thinks that change is always bad and should be fought. Then, it feels like my body says ‘Fine. If this is going to be what it is, I’ll just deal with it’ and I feel better. I can always tell by increased hair loss if my levels are moving even if I am moving within the normal range.

Take care,
Laurel

[LaurelM]

in reply to: Help! Is this Graves related or something else!? #1178152

Hi,
So sorry you joined our club. Just itching can be either due to being hyper or a reaction to the ATD. Hives however, make me more suspicious of of a reaction. I developed hives several months after being on Methimazole and was switched to PTU.
There are several possibilities your Dr might want to have you try which could include:
1) continue and try to control the hives with an antihistime;
2) lower your dosage with or without an antihistime;
3) switch to the other antithyroid drug (either Methimazole or PTU);
4) take you off ATDs and recommend either RAI or surgery.

You need to call your Dr and discuss exactly what you are experiencing so that you can take a safe course of action. You may even consider calling the office tonight as they probably have an after-hours answering service.

Let us know how you get on.

Take care,
Laurel

[LaurelM]

in reply to: Just for Fun – The “Off Topic” Thread! #1177827

As good read for when our attention span is short is As Always, Julia: The Letters of Julia Child and Avis DeVoto. It is a collection of lmany years of letters written between the two women while Julia was in Europe and developing Mastering the Art of French Cooking with her co-authors and Avis an accidental pen pal/ publishing contact. It is facinating for myriad reasons: 1) Their writting styles are very personal and engaging – on par with good fiction; 2) You get a sense of what was happening politically in in the world. Remember, the Childs were stationed in Europe as diplomats; and 3) The descriptions of the cooking….oh my.

I tend to read before bed and found that I could read one or two short letters before I fell asleep and still follow what was happening. Loved it!

[LaurelM]

in reply to: New and scared – just like everyone else. #1177688

So sorry you have joined the club. The good news is that it will get better. The not quite as good news is that there is no quick fix. My first experience on an ATD (antithyroid drug) is that it took 4-6 weeks to not feel crazy bad. At 3 months, I felt much better. At some point over the year, I felt truely well. You mentioned crying. That is what finally pushed me to the Dr. I thought I had post-partum depression (I was 8 months postpartum) because I was crying ALL the time – in the shower, on my way to work, sitting at my desk, etc. I didn’t feel ‘sad’ per se but I didn’t know what else could possibly cause it. Luckily my doc knew me pretty well and even though she put me though the questionaire for depression, she also checked my heartrate and sent me to the lab. Within a week, I was being seen by an endo.

I went on to have a healthy 2nd pregnancy and a 6 year remission. I am now back on ATDs and most of the time, am doing OK.

The good thing about the ATDs are that you can begin treatment and gain time to really research all of your options. You also need to keep in mind that the hyper state can really hamper our ability to calmly consider our options. With time, you will be able to have some perspective which is really hard right now with such a new diagnosis.

My doc is our whole families primary doc. She made sure to add the autoimmune disease family history to their charts but unless we have a specific concern, there is no need to test them for anything. They are both happy and heathly kids who are doing well in school. Because of the family history (and not just thyroid autoimmune disease) they are at a bit higher risk over their lifetime but it is certainly not a guarentee. My grandmother was the only child out of 5 to have a thyroid issue. None of her 3 children have had a thyroid issue (the youngest is nearly 70). I am the only cousin out of 6 to have an issue. None of the great-grandchildren have had thyroid issues (so far).

Best wishes for feeling better soon. Keep us posted.

Laurel

[LaurelM]

in reply to: What Acronyms Do Our “Newbies” Need to Know? #1177453

TSI
Total vs Free T4 & T3
TPOAb
Anti-TPO
TBII
TgAb
TRAb
I-131

Maybe also:
ablation – not really an acronym but maybe a definition would still be useful
beta-blocker – maybe a definition and a list i.e. Atenolol, etc.

Thanks!

[LaurelM]

in reply to: Newly diagnosed – some questions? #1177255

Hi!

Sorry you are dealing the GD but glad you found a diagnosis and this forum. I used Methimazole (I always want to shorten that to Meth but people could get the wrong idea ) my first diagnosed episode about 6 years ago. I had about a 6 year remission and am back on an ATD. I totally agree that they taste terrible. It took me about 6 weeks to feel 80% normal and by 3 months I’d say I was at 90-95% normal. I was also postpartum so there may have been other factors in the lenght of time it took until I was feeling better.

I also had the extreme hunger you described. I recall having dinner at a friend’s home and having seconds, thirds, cleaning out the serving bowls, and then finishing my husband’s leftovers. I still remember the wide-eyed looks on their faces at the amount of food I had just packed away. The one dietary caution you may want to be aware of is to avoid seaweed/kelp while you are hyper. Too much iodine is like throwing gas on the fire right now so no sushi binges.

Best wishes,
Laurel

[LaurelM]

in reply to: Looking for graves ladies who have had babies.. How premmie were they? #1177235

Hi Again,

I should have added that I was being closely followed by a high-risk OB, my endo, and our family/baby doc to ensure that the pregnancy was on track. I had more frequent blood work and an extra ultrasound or two to make sure everything looked normal (thyroid levels at normal levels for pregnancy and the baby’s growth & heartrate were normal). Be sure that your Dr’s are being dilligent. They can treat you and the baby during the pregnancy if required. My OB kept telling me it was nice to have a patient with a ‘boring’ pregnancy. Of course, he wasn’t the one heaving his breakfast every day.

Best wishes,
Laurel

[LaurelM]

in reply to: Looking for graves ladies who have had babies.. How premmie were they? #1177233

Hi!

Congratulations on your bundle of joy to be!

I was orignally diagnosed postpartum with our first. I was still in treatment on Methimazole when we got pregnant with our 2nd. I was switched to PTU for about 6 weeks (what I could keep down anyway – baaaad morning sickness with each of my pregnancies) when I was taken all the way off ATDs. My pregnancy was very normal and my daughter was born exactly on her due date. I was suprised as our first baby was 10 days early so I kept expecting #2 to be a few days early as well. She is now a very healthy and happy 6 year old.

I actually remained in remission until last spring and now am back on ATDs. We were expecting to need to continue treatment sometime postpartum but my levels stayed normal.

After our first, I was still nursing when diagnosed. My endo wanted me to keep nursing so we did not do any uptake scans and diagnosed my based on the TSI and other blood work. We did have to periodically test our baby’s thyroid levels due to the possibility of ATDs passing through the breastmilk. This was done with a heal stick and there were never any issues. I initally started treatment on a high dose of Methimazole and was tapered down over a few months to a low dose.

Let me know if you have any other questions I can answer about my experience.

Laurel

[LaurelM]

in reply to: Saw New Endo–Love her!! #1177211

Yay!!!! I’m very happy for you.

[LaurelM]

in reply to: Stress and Graves’ #1177093

I certainly think it CAN have an influence. I’d been doing fairly well on PTU but had to raise my dose at my last endo visit. My mother had been critically ill due to a surgical complication. Along with trying to do normal holiday things for the kids, other commitments, and the stress of her illness, I was pretty worn out. Sure enough, my last blood work showed my levels were too high. Sorry for the strong language but darn those pesky hormones!
Laurel

[LaurelM]

in reply to: 6 days post TT- menstruation/pregnancy question #1177065

I have a good friend who had thyroid cancer about 15 years ago in her mid 20s. She had BOTH the total thyroidectomy and RAI at a significantly higher dose than GD patients receive. Her healthy little boy was born almost 5 years ago.

For GD patients though, regardless of treatment type, you will need your TSI tested during your pregnancy as the autoantibodies rarely can cross the placenta which may require medical intervention/monitoring during the pregnancy causing a temporary condition called Neonatal Graves. None of the treatments for GD affect the autoantibodies. This is RARE but your OB will need to be aware of your GD history.

Wishing you a speedy recovery so that you can move forward with your family plans!

Laurel

[LaurelM]

in reply to: Pregnancy with having Graves??? #1176710

Hi,

I just posted a really long response about pregnancy on the post from Megtimhart and then saw your post about pregnancy too. I’ve written a few times about the topic. You can search on my user name. Thanks for being an advocate for your sister. As a patient, it is always nice to have someone else you trust helping to find answers.

Laurel

[Author]

Posts