[LaurelM]

in reply to: Im a new diagnosis and dont know how to pay for treatment #1068564

In Washington State, you need to contact a Community Services Office that serves your area. They can be found in the blue pages of a phone book. They also have quite a bit of information available online at
http://hrsa.dshs.wa.gov/SummaryOfServices.htm
There are several different programs that can be considered. All are based on income and other eligibility factors. The CSO will also facilitate an application for federal benefits if appropriate.

I hope this helps.

[LaurelM]

in reply to: recently diagnosed with graves #1069122

Hi,
I was able to acheive remission on ATDs and have been happy with the result. I was pretty emotionally loopy and didn’t have the most clear thought processes when I was diagnosed. The ATDs gave me time to thouroughly learn about the disease and treatment options. Since I tolerated the ATDs fairly well, I was fine just staying on them. I would consider trying them again if I come out of remission (even as a long term option). I am also more comfortable now with the other options surgical thyroidectomy or RAI. As long as there are no other medical reasons why you would have to choose one over the other, then it really is a very personal choice and you should go with what feels right to you.

There have been some very good discussions on long term ATD use, RAI, and thyroidectomies here on the board. It is OK to take some time to do plenty of research before you make any decisions as long as you have started treatment on ATDs.

Laurel

[LaurelM]

in reply to: Ultrasound & Pregnancy #1069039

One very very very rare complication of a pregnancy for a GD mother (even after RAI or thyroidectomy and even with normal thyroid homone levels) is that the auto-antibody that causes the GD can cross the placenta and affect the baby. The auto-antibodies are produced by the immune system (not the thyroid gland) and travel in the blood. Another test they may request during pregnancy is the TSI to test the auto-antibody level. This can give them an indicator of likelihood of a problem but is not a 100% sure answer so they may want to do more frequent ultrasounds just to ensure that growth & development is on track.

Your baby’s doctor should also be aware of your history as they may want to keep a bit closer eye on growth and development for a couple of months after birth as well (and your children’s family medical history should include thyroid disease anyway).

As I said above, this is a very very very rare situation. I was still on a very low dose of ATD when I became pregnant with my second. I was able to discontinue the ATD about 6 weeks into the pregnancy and I delivered a very healthy happy girl who is now 2 1/2.

Also keep in mind that you will need more frequent thyroid level checks for up to a year post-partum as levels/replacement needs can fluctuate during this time.

I hope this helps.

Laurel

[LaurelM]

in reply to: Phew I made! I am now thyroid free and home! #1069470

Hi,
I’m so happy to read that your surgery went well and that you are recovering. Hopefully you have a speedy stabilization on replacement thyroid!
Best Wishes,
Laurel

[LaurelM]

in reply to: Getting Pregnant #1069749

I ended up getting pregnant about a year (give or take) after diagnosis. I was still on a low dose of methimazole and then immediately switched to PTU. Our 2nd baby was ahead of our schedule. I would have waited until I was off meds or had surgery and been stablized on replacement if mother nature hadn’t intervened. I was able to get off the PTU right away too but it still made me uncomfortable.

Laurel

[LaurelM]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070170

I am a total dairy nut. Yes, I actually grew up with my own milk cow. My endo said my dairy consumption was fine and in fact gave me a total pass to continue my 2 latte (skim milk) a day habit as well as other dairy like cheese & yogurt. He also encouraged me (EVERY VISIT) to take additional calcium/vit D supplements. Of course I was nursing & then pregnant too so I’m sure I really needed it – I still take it. I enjoy the occasional glass of wine. Sometimes the sulfites in the wine make me a little stuffy but, oh well. I love salmon (and most other fish). I haven’t eaten much for awhile but only because of the price and because of social conscience. I worry about overfishing and pollution from farm raised fish so that is more of a personal choice than a health decision. So far it seems to work for me. I have felt great.

[LaurelM]

in reply to: Did you develop hives/ itching from tapazole? #1070127

I developed hives too but I had been on Methimazole (Tapazole) for about a year. I also became pregnant at the same time. We don’t know if it was the Methimazole or the pregnancy or somehow the combination. I’m sure we will never know. I was switched to PTU. I had liked the convienience of the one a day dose of Methimazole vs multiple doses of PTU but it worked out fine.

[LaurelM]

in reply to: NAME THOSE FOODS…The Good/The Bad/And The Maybe #1070168

The only thing my endo recommended I try to limit was seaweed/kelp when I started treatment. There was not a total prohibition, but rather just ‘try to avoid frequent consumption’. I was allowed an occasional sushi fix. I suspect that given 10 different doctors, you will get 10 different recommendations. I think just eating a healthy diet rich in fresh fruit, veg, and whole grain plus the occasional indulgence (gotta have chocolate) has worked well for me. I have been in remission for almost 3 years now.

[LaurelM]

in reply to: Getting Pregnant while on PTU vs. following RAI #1070294

Hi,

I was on Methimazole when I became pregnant with our 2nd. I was switched to PTU but was able to stop taking it about 7 weeks into the pregnancy. My 2 1/2 yr old daughter is healthy and happy. Right now she is singing ‘Old MacDonald Had a Farm, Moo Moo’ at an ear shattering volume. We were not planning on becoming pregnant at that time. We did want a 2nd baby but mother nature presented her ahead of our schedule. Personally, if I were contemplating another pregnancy, I would want to be off the ATDs. I would also consider that stabilization after the RAI can take some time. There are varying recomendations on how long to wait to try for pregnancy after you have it done. Have you considered a thyroidectomy? With surgical removal, you might have a speedier time reaching and staying at normal levels on replacement hormone. I also understand that replacment hormone is easier to manage the correct thyroid levels than ATDs during pregnacy. I recommend that you find a really good high risk OB/GYN prior to trying to conceive and ask these questions.

Other things to consider, women can have a worsening of GD in the 12 months postpartum. I was 8 months postpartum with our first when I was finally diagnosed. I jokingly say my 1st pregnancy triggered the GD and my 2nd put me in remission. If your thyroid has been removed (via RAI or thyroidectomy), this is a less likely scenario. You will still likely need to have frequent thyroid level checks in the year postpartum.

Regardless of what you finally choose, be aware that you will need to be monitored more closedly during your pregnancy to ensure the proper thyroid levels and to monitor the baby’s development . Ideally, you will be under the care of an endocrinologist and a high risk OB/GYN or maternal/fetal specialist.

The vast majority of women who have had their thyroid levels stabilized (by any of the 3 treatment options) prior to becoming pregnany can have a healthy pregnancy but the risk of complication is still somewhat elevated from the general population.

Best wishes,
Laurel

[LaurelM]

in reply to: TS patients – still feeling the affects #1070393

Don’t forget that you also recently had a new baby. Physical recovery from just a pregnancy can take up to year. Couple that with TS and your body & emotions have been through the wringer. Remember that it will take awhile AT normal levels for your body to begin to heal. I think I was close to about a full year before I pretty much felt like my old self. For me, the physical recovery seemed to happen earlier than the cognitive (short term memory/brain fog) and the emotional ‘flutters’, but it DID finally happen. It will happen for you too, eventually. I know it is hard to be patient when you have felt so bad for so long.

Laurel

[LaurelM]

in reply to: Disability #1070403

There are federal disability benefits (Supplemental Security Income or SSI for people who do not have a work history and SSD Social Security Disability for people who have a qualifying work history). Both of these federal programs can take 12-24 month to quality for with several denials.

States may also provide disability benefits. This varies considerably state to state. Generally, states that do offer cash & medical disability benfits have less stringent rules. For example, the state may require that the disabilty only prevent the idividual from being able to work for a period of 3 months or more based on a Dr. statement. Once that statement is received, and assuming all other qualifications are met, the state would start benefits back to the date of your application.

I have not worked directly in this field for about 10 years now so my specific eligibilty knowledge is both out of date and rusty (what I can actually remember). And like I said, it really varies from state to state for what is offered. My best advice is to start at your local Community Services Office (or whatever your state calls their welfare office). If they don’t handle these applications, they make sure you ask them to direct you to where you need to go.

Good luck.

[LaurelM]

in reply to: pregnancy #1070589

Hi,

I was diagnosed 8 mo postpartum (8/05) after our first baby born 12/23/04. I was on Methmizole until I became pregnant with our 2nd in 2/06. When we discovered that I was pregnant, I was switched to PTU which I was on for about 1 month and then was able to discontinue meds (which I couldn’t keep down anyway due to morning sickness). Our second baby was, well, ahead of our family planning schedule. I had wanted to be off ATDs before trying again but mother nature had other plans. I was followed closely throughout the pregnancy by a high-risk OB and my endo. I had a very normal pregnancy and delivered 10/5/06. She is a very healthy and happy 2 1/2 year old. I am still in remission following the second pregnancy. Our baby’s Dr. watched her a little more closely for the first few months to ensure that we passed the time frame that any residual antibodies from me might trigger neonatal graves. We were not really worried about it though as she had developed normally (heart rate, growth, etc.) while I was pregnant and that is a very rare complication.

I had been very apprehensive about the ATDs and pregnancy but I was on a low dose and was able to go off them early into pregnancy.

Our family Dr. has included my thyroid disease in our children’s family medical history as this is important for them to know but it is just like anything else that might ‘run’ in families like heart disease or breast cancer.

I was still nursing our first when I started on Methimazole. I was fortunate that my endo was very supportive of continuing this as he felt the benefits outweighed the risks. Out of prudence, our baby’s Dr (an associate professor of medicine) consulted the Ped. Endos at our hightly rated children’s hospital. They were also unconcerned about it but they did monitor our baby’s thyroid levels about every 6-8 weeks. They always checked out fine.

I would be happy to answer any questions you have about my experience if you would like.

Laurel

[LaurelM]

in reply to: 22nd of July – date for op very nervous! #1070707

Just wanted to say that I’m still sending good thought and prayers your way. I’m happy to see that you are finally getting scheduled. Your story has felt like a very long journey and I have been impatient on your behalf. A surgery date is a milestone. I hope you feel better rapidly post-op.

I chuckled that you would choose childbirth vs operation. I would pick pregnancy symptoms again vs GD if I had to choose – and I threw up at least once a day up until the day I delivered.

My 4 year old just told me that she is ‘allergic to little sisters’. She had wanted a cat recently but we told her no because I am allergic to cats. The really funny part is that two days ago, she wanted us to grow another baby (she will be out of luck I think on that one).

Congrats on getting a date set!

Laurel

[LaurelM]

in reply to: Need assistance #1070855

Hi Roxanne,

I am sorry that I can’t say for sure what type of scan she had. I had assumed it was similar to the RAI Uptake due to the no iodine diet. She needed to clear all of the dietary iodine out of her system so that when she had the scan done any remaining thyroid tissue would suck up the radioactive iodine and therefore would show if she had any active thyroid tissue.

Sorry it took a couple of days for an answer. I am a healthy lurker on the board. I have been in remission for a couple of years now and only scan the posts every few days as time allows.

I hope that was somewhat helpful.

Laurel

[LaurelM]

in reply to: Need assistance #1070851

A friend of mine had thyroid cancer. For five years following her thyroidectomy and RAI, she had full body scans done to detect if there was any residual thyroid tissue ANYWHERE in her body – not just her neck. Apparently, some people do have thyroid tissue in other areas of their bodies. She had to do the NO iodine diet prior to the scans so that the test would really ‘light up’ any lurking thyroid tissue. Fortunately, her scans all came up clear but if they hadn’t she would have had to do RAI again to kill off the remaining tissue.

[Author]

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