[LaurelM]

in reply to: Its a boy!! #1063336

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That is fantastic news! I’m so happy for you and your family. I hope all continues to go well and that you continue to feel well. Congratulations!!!

Laurel

[LaurelM]

in reply to: Remission? What do you think? #1064170

Hi Kelly,

I was diagnosed with Graves about 8 months post-partum with my first child. I was well controlled on Methimazole for many months when we discovered I was pregnant with our 2nd child. At about 3 weeks after conception, I was switched to PTU. I was able to completely stop taking any ATD about 6 weeks into the pregnancy. (I couldn’t keep much of anything down anyway.)

For me it was likely that the first post-partum period triggered the Graves. During pregnancy, the immune system supresses a bit so that the body does not reject the fetus. After pregnancy, it revs back up. This is often a time that an auto-immune disease (of all kinds -not just thyroid) presents itself.

I was lucky the second time around and remained in remission (getting close to 5 years now). I have two happy and healthy children. I feel great. However, it was stressful to know that I was on the ATDs at the time of conception and for those first few weeks. We also fully expected that I would need to resume treatment post-partum. If mother nature hadn’t surprised us the 2nd time, I would have been more comfortable having had a permanent treatment prior to conceiving the second time.

Anyway, that was my experience. I hope it helps.

Laurel

[LaurelM]

in reply to: Will this get better? #1063657

Hi Krystal,

So sorry you have joined the club. For me, it took about 4 weeks on the meds to notice an improvement. By about 6 weeks I was feeling somewhat better. It took about 3 months to feel wellish if not quite my old self. It took about a year to feel competely well. Every person’s recovery is individual.

The beta blocker really helped to mask my symptoms in the early weeks. If you are not on one, consider talking to your Dr about it. Also, many of us have also used antidepressants to cope in the early healing process. You have some seriously out-of-whack body chemisty going on right now. It is OK to ask your Dr’s and your family for extra help. It will get better with treatment. It will just take some time.

Sending wishes for a speedy recovery,
Laurel

[LaurelM]

in reply to: Diet Support #1063705

The one thing my endo cautioned me about was being careful to limit seaweed/kelp. No big sushi binges. There is so much other food that I like that this hasn’t been a problem but it was nice to to not be completely prohibited should I want a little taste.

The other thing he nagged me about (CANNOT exagerate the nagging) was to be sure that I was getting enough calcium. He wanted me to take a calcium supplement with D. In the PNW, we tend to be D deficient as well and you need D to use the calcium. He went over my typical diet with me which includes 2-3 glasses of non-fat milk (8 oz) and some other dairy (cheese or yogurt) in a day. He said it was still not enough even with the prenatal vitamin I was still taking. Of course, I had just had a baby and was nursing so my body probably had an even greater need to replace calcium. My family also has a history of osteoperosis. When I had my 2nd child who has a dairy allergy, I had to bump up my supplement even higher since I had to go dairy free. She also now takes a calcium/D supplement per her Dr. We want to ensure her growing bones get what they need.

I eat a nutritionally dense diet. Mostly whole grain, lots of fruit/veg, dairy, mostly lean protein, and organic when possible. Nothing special other than just a healthy way to eat – with an occasional brownie. Yum. And, I continue to take my vitamins & calcium + extra D.

Best wishes for a speedy recovery,
Laurel

[LaurelM]

in reply to: Has anyone else developed a shellfish allergy? #1063850

People can develop allergies at any time; sometimes allergies can go away. An allergy is similar to an autoimmune disease in that the immune system mounts a way over the top response. The difference is that in an autoimmune disease, the body is attacking its own tissue based on an internal rather than external stimulus. There are some recent and ongoing studies looking at the connection between allergies and autoimmune diseases. There was an interesting study released in 2007 conducted by Children’s Hospital and the UW in Washington State.

For most people with a shellfish allergy, it is a response to the protein (not iodine) that causes the issue. Food intolerances are similar to allergies and can cause just as much discomfort but generally do not have the potential to be life threatening. For example, many people are lactose (cow milk sugar) intolerant and experience a great deal of discomfort when they ingest lactose. This is differerent from people who have a true dairy allergy which is to the milk protein (casien). The severity of true allergic reactions can vary widely from very mild to life threatening.

Food allergies are no fun. You may want to talk to your Dr about carrying an epi-pen if you haven’t already done so.

[LaurelM]

in reply to: RAI vs Surgery vs Meds #1063971

I went into remission with the help of ATD’s (and perhaps my 2nd pregnancy helped too) and I’d consider them again if GD becomes active again.

Since ATDs seem to not be ideal for you I wanted to tell you about a friend of mine. She had thyroid cancer (not GD) in her mid 20’s. She was treated with a much higher dose of the RAI than GD patients receive (she was required to stay in the hospital for a few days after dosing) and she also had to have a surgical tyroidectomy. She takes her replacement thyroid hormone daily. She is now in her late 30s and looks and feels great. And, has a healthy & happy almost 1 year old baby!

Based on her descriptions of each method of treatment, I’d be comfortable with RAI or surgery. For me it would just depend on my life circumstances at the time.

Only you can make the decision (with Dr. input) for what will be right for you.

Best wishes,
Laurel

[LaurelM]

in reply to: I’m pregnant! #1064915

Congratulations!

I had a similar experience with our second. She is now a happy & healthy 3 1/2 year old. I was able to wean off ATDs very early in the pregnancy. I was sent to a high risk OB (not because they expected any issues but just to be prudent). My OB coordinated with my endo, and family doc (who was also going to be our baby’s doc) so that everyone on my medical team was informed. I was monitored a little more frequently and closely just to be sure everything was on track. I had a medically boring and normal pregnancy.

One thing they did extra was to check my TSI. This measures your levels of auto-antibodies. If they are high, there is a teesnsy, weensy, itty bitty increased risk of neo-natal graves which is a temporary hyperthyroid state for the baby (even if your levels are normal). Did I mention that this is very, very rare? Your baby’s doctor should be informed about your history as they will want to keep a closer eye on the baby for the first couple of months.

As it turned out, my second pregnancy & birth was a lot less difficult than our first. Go figure.

I was also warned that GD could come back in the 12 months post-partum and had very regular blood work. It was post-partum with our first that I developed it so for a full year I just expected at some point to go hyper again. I am happy to report I am still in remission and now am only checking annually.

Again congratulations! I hope the pregnancy symptoms ease soon!

Laurel

[LaurelM]

in reply to: Dx with graves disease #1065018

Hi,

Are you seeing an Endocrinologist or your General Practitioner? Generally, endos know way more than an GP about thyroid disease. When I first went to my family doc with my issues and she ran the initial blood tests she immediately referred me to an endo saying ‘I don’t do Grave’s Disease. We have specialists for a reason.’

Regardless of which you are seeing, if you are really concerned or question what you have been told, you always have the option of getting a second opinion. Its OK. Get copies of all your lab work if you haven’t already. It really helped me to always have my numbers and the lab reference ranges in front of me. Also keep a diary of symptoms with specific information such as weight changes. Write down the questions you want to get answers for. It really helps focus the conversation when you do have Dr. appointments.

Laurel

[LaurelM]

in reply to: Meds/Remission #1065049

I took Methizole for about a year. Initally a larger sized dose but decreased fairly quickly to a smaller dose. I tolerated it very well and felt better (not well) after about 6-8 weeks. I felt increasingly better over the next year.

I was switched to PTU when we became pregnant with our 2nd. I didn’t end up taking very much both because I wasn’t keeping anything down and my levels were good. I was on PTU for only about 6 weeks.

The pregnancy may have actually helped me acheive remission (I really don’t recommend trying it as a treatment though) or I may have just been heading there with the medication. We’ll never know. I had expected to come out of remission post-partum as that was what triggered my GD we think but I’ve been lucky. In hindsight, there may have been episodes in the past 20 years that resolved on their own but since I have no way of knowing, I don’t worry about it.

I feel great. I just mowed 1/2 an acre with a push mower. I get my levels checked by my GP once or twice a year. My endo (who was fantastic) ‘fired’ me as a patient ” title=”Very Happy” /> If I need an endo again, of course he will be the one I go back to.

The ATDs did allow me plenty of time to learn about all my treatment options. It was amazing how much calmer I was and how much clearer I could think a few weeks into being on the Methimazole. I would be comfortable with any of them depending on my medical and non-medical life circumstances at the time.

Hope that was helpful.

Laurel

[LaurelM]

in reply to: Newly dx with Graves/goiter #1065151

A benefit of the ATDs is that they can give you some time to clear the GD head fog and allow you time to lean about your choices and make an informed decision about what type of treatment you ultimately want. I went the ATD route and have been in remission for 3+ years. If GD comes back I feel like I really understand all my options and will be able to make a choice I am comfortable with.

Best wishes!

Laurel

[LaurelM]

in reply to: For ATD Patients – ATA Recommendations on Iodine #1065061

The ATA agrees with the recommendations that American need to reduce salt intake in order to reduce cardiovascular disease. The issue is that 70% of the American dietary intake of salt (sodium chloride) is in processed foods. The majority of the salt that is used in processed foods is not iodized. The average American diet has not reduced salt intake over the last 40 years according to the Institute of Medicine which is leading the campaign to regulate salt content.

The ATA is not recommending more salt be added but that the overall salt levels be reduced and that the salt that is used be iodized.

Really, we should all just be reducing our intake of processed foods! Then we can have much better controll over what we are ingesting.

[LaurelM]

in reply to: Sick sick daughter with mental issues with Graves! #1065170

Hi,

I’m sorry I have no advice for how to help your daughter. I just wanted to let you know that your family are in my thoughts and prayers. Remember to care for yourself so that you can continue to care for your daughter and grandchild. Hopefully there are others who can help lift some of the burden off your shoulders. Usually people won’t know how to help unless they are told what is needed.

Laurel

[LaurelM]

in reply to: Wondering? #1065401

Hi,
There are many, many women who have used the three treatment options (RAI, surgical removal, or anti-thyroid meds) and have gone on to have healthy pregnancies and babies. The most important thing is to have your thyroid levels well controlled at normal prior to conception and during the pregnancy. Too much thyroid can trigger a miscarrage. Too little thyroid can affect the cognitive delopement of the unborn baby.

I can tell you my story.

I was diagnosed about 8 months post-partum and started taking methimazole. Continuing breastfeeding was very important to me and was supported by my endo and our baby’s doctor. A pediatric endo was also consulted at our top notch reginal children’s hospital. All gave the green light with the stipulation that our baby have regular thyroid checks every 4-6 weeks. Extra attention was given in monitoring her growth and development. She is now a happy, healthy, smarty-pants 5 year old. It was heartbreaking putting her through the blood draws but we all felt the benefits of the breastmilk were important. The American Academy of Pediatrics has a policy statement that places methimazole and PTU in the catagory of usually compatible with breastfeeding. You can find it on their website. I think they also consider the dosage the mother needs (a higher dose means more will pass throught the milk) and the size/age of the baby when making a recomendation so nothing is a guarentee of safety.

I had been on methimazole for several months when we discovered that we were expecting our second child. By then I was on a much lower dose than when I first started but my endo switched me to PTU. I was sent to a high-risk OB because of the GD. I had a great medical team (my primary, endo, OB, and my baby’s Dr) who all followed me throughout the pregnancy. I was able to discontinue the meds about 6-8 weeks into the pregnancy. We had planned on a second baby but we hadn’t planned on a pregnancy while I was in treatment. On the plus side, the combination of ATDs and pregnancy triggered remission. For a full year after birth, however, I had frequent blood draws expecting it to return post-partum as it had after my first pregnancy. Our second child is a happy and healthy 3 yr old. It was very worrisome to go through a pregnancy knowing that I had been on a pregnancy catagory D medication for even a short time.

While I feel fortunate to be in remission now have my thyroid intact, it isn’t the route that I would have chosen with the prospect of a pregnancy and nursing. I personally would rather have had a thyroidectomy, get healthy, and regulated on replacement prior to conceiving.

My experience is just one of many and no two are exactly alike. If you have any other questions about my experience, I would be happy to answer them.

Best wishes,
Laurel

[LaurelM]

in reply to: TSI LAB, IS IT AN INDICATOR OF ACTIVE, COLD PHASES TED #1065443

Hi Shirley,

Another cause of the chemosis could be allergies. We are in the same region and I have been having some chemosis (not really bad but annoying) with my allergies this season. Surprisingly, sometimes it is my only noticeable symptom.

Best wishes,

Laurel

[LaurelM]

in reply to: Treatment options if want I to become pregnant #1065580

The American Academy of Pediatrics has Methimazole on their list of medications that is USUALLY compatable with nursing. http://aappolicy.aappublications.org/cg … ;108/3/776

As Ski points out it depends on how soon (how old/big) is the baby and what your dose is. You can’t predict if, when, or how much post-partum you would need to start taking.

I grilled all of the doctors, our regional children’s hospital endo were consulted and they all agreed that for us, the benefits of continued nursing outweighed the risks. It worked out fine for our family but it was worrisome and I would have preferred to not need to take it while nursing.

It is something you should talk about with your doctors.

Laurel

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