[LaurelM]

in reply to: RAI #1072243

I was able to acheive remission with ATDs (and didn’t have any big issues while on them) so I have not had to make any other choices yet. For me, the ATDs were easy and inexpensive.

I have a good friend who had thyroid cancer in her late 20’s. She had to have both a thyroidectomy and 2 doses of RAI (at a MUCH higher dose than GD patients receive). You can barely see the teeny tiny scar from the surgery. It blends right into a neck fold. As for the RAI, because of the higher dose, she had to stay in the hospital for a couple of days and then keep a distance from others for a few more days. According to her though, looking back both treatments were very doable. She did not experience any significant issues from either. She is of course on replacement thyroid hormone now and that too has been fine.

I have another friend who had RAI for GD. She feels that she was rushed into the proceedure without all her options but she says it worked very well for her and she is not unhappy that she had it. She is also now on a replacement thyroid dose. She never visits this board because she feels fine/normal and has a very busy life as I’m sure is true for the vast majority of patients.

If I come out of remission, I am willing to consider all of the options. For me, it would just depend on what my circumstances (personal & medical) are at the time I would have to make that decision.

If there are no medical reasons not to, then go with whatever your feelings are leaning to. Being comfortable with your choice should be a significant factor in YOUR decision.

Best Wishes,
Laurel

[LaurelM]

in reply to: GD & Joint pain / loose joints..any link #1072428

Hi Catsmum,

Since your daughter is still an adolecent, it is possible that she is still growing which could cause the loose joints and pain. I know that most girls are not still growing at 17 but some do. I grew a whole 1.5 inches after turning 18. As a freshman in college, it was bad timing to have to replace all my pants and shoes. Incidentally, my maternal grandmother who also had GD grew an inch at the age of 19 (and this was after having her 1st child). Neither of us were diagnosed with GD until in our 30s (but in hindsight, I think I may have had mild bouts since adolecence) so I can’t say if it was related or just some wacky genes that my family has.

I hope daughter feeling better soon.

Laurel

[LaurelM]

in reply to: Itchy skin #1072557

twhite-

My mother has had a very itchy rash/skin condition (the docs haven’t ever been able to say for sure what it is) for a few years. They recently installed a whole house water softener system and it has really helped.

Just another idea.

Laurel

[LaurelM]

in reply to: Itchy skin #1072548

My 4 year old daughter also has significant trouble with eczema. Be sure that you do not use too hot of water when showering as this is also drying to the skin. Alas, I love a nice hot shower.

I know this may sound a little strange but our Dr recommended using vegetable shortening or olive oil instead of petroleum jelly as moisturizer. Since we have to slather so much on her daily (nearly every square inch of her skin), it is nice to use a more natural product rather than a mineral oil base. We notice significant flare ups during winter (when we are inside with the heat on or other low humidity conditions) or when she has a cold (darn those overactive immune systems). We are just about to consider pursuing elimination diets to determine if a food allergy is contributing to the problem. Skin issues are a common manifestation of food allergies. My other daughter had a dairy allergy as infant but has since outgrown it (she had different symptoms like intestinal bleeding at 3 months old). My cousin’s 3 year old has a dairy allergy as well. His only symptom is itchy skin that then flares into eczema if he has had enough exposure. Wheat/gluten, soy, egg, & nuts are some of the other usual suspects.

We also only use dye & perfume free laundry products. I only wash her hair when I have to and only at the end of the bath so that she is not sitting in any soap. I use a diluted dandruff shampoo (Selsen Blue or Nizoral) and rinse it off as quickly as possible.

This may not be the problem at all but it is something else to consider.

[LaurelM]

in reply to: Diet and Hyperthyroidsim + GO #1073045

Many people are sensitive to the sulfites in wine. This problem is not exclusive to people with Graves. Sulfites can cause allergy like symptoms (swelling, watering, burning, gritty eys, and runny nose, etc). Sulfites are also used to help preserve some dried fruits. Some people with asthma are warned to avoid them as they may exacerbate symptoms. For people with a sulfite sensitivity, it is important to read the ingrediant lable.

[LaurelM]

in reply to: Why PTU vs. Methimazole #1075103

Tapazole is a brand name of methimazole. I liked the convenience of the one a day pill (& no bad taste)of methimazole compared to the multiple dose of PTU with an icky taste.

Interestingly, the American Academy of Pedicatrics has a policy statement regarding the transfer of chemicals and drugs into human milk. They list both PTU and methimazole on the table for drugs usually compatable with breastfeeding. http://aappolicy.aappublications.org/cg … astfeeding

I think the caveat is ‘usually’. There are many factors in making that decision that should be discussed with both the mom & baby’s doctors. I was able to nurse our first while on methimazole. I was still on methimazole when we got pregnant with our second child (definately wanted but nature scheduled it earlier than we had). I was switched to PTU right away which I was on for only about 6 weeks into the pregnancy before I was completely taken off. I sometimes wonder if it was the second pregnancy that triggered the remission but I don’t really recommend it as a Grave’s ‘therapy’. I really would have been more comfortable being off medication for the entire pregnancy, especially in the first trimester when the baby’s thyroid is forming but you do what you need to do to at the time.

I think that Buttamama makes a good point that if you have a history of Grave’s and are considering conceiving, you should discuss the possible issues with your doctor.

[LaurelM]

in reply to: Bad Thoughts #1073167

I had those kinds of thoughts too. There is a floating bridge in our area and every time I would have to drive over it, I would worry about how would I get both of my small children out of the car if we were to go over the side. At some level I knew that I wasn’t having my normal thought processes. Like Jake said, I was totally in the fight or flight mode and in a constant state of heightened ‘danger’ awareness. It was very exausting. Betablockers helped me in the short term and then having normal levels for awhile brought me back to my normal self.

[LaurelM]

in reply to: Hair loss – I’m scared #1073242

Hi,

Remember that you are also postpartum which can also result in hair loss. I lost quite a bit a hair as well but like you, started with thick hair. The hair and nails were among the last to improve for me. It never got to the point where I think it was noticible to anyone other than my stylist but I remember using a lot of lint brushes at work to de-hair my clothes.

You should definately talk to your Dr very, very soon about the sores. The first thought that I had when I read your post was that they might be Shingles. If you have ever had the Chicken Pox virus, the virus can lie dormant for years and then show up on your torso as sores. If it this, then there is something they can give you to shorten the length and severity but it has to be taken right away (within a day or two of onset) or it isn’t effective.

Let us know what you find out. I keep you my my thoughts and am happy when we hear from you. Eventually you will be able to post that you are starting to feel better.

Laurel

[LaurelM]

in reply to: New to GD, maybe. #1073274

Hi,

I was diagnosed only with blood tests but some people also have what is called an uptake scan for diagnosis. I don’t know a whole lot about the uptake scans. Blood tests can be diagnostic for Graves, but not always. It depends on what tests were taken and what if the autoantibodies were active enough to show up on the test.

I would recommend that you get a copy of all your blood work that was done and start keeping a notebook. Note any symptoms & questions that you have. Take it with you to all of your Dr. appointments and write down the answers during your appointment and anything else the Dr. tells you.

It also sounds like you do not have much confidence in your current Dr. Find a good GP Dr. you have confidence in. You also will likely need an endocrinologist. Look for one that has a lot of experience with the thyroid. Many endos specialize in other endocrine diseases like diabetes and so are not as familiar with thyroid disease.

You mentioned that you were hypo in HS. It is also possible that you have Hashimoto’s which is the hypothyroid autoimmune disease which can occasionally send someone hyperthyroid for a brief time. I believe that there are some ‘lucky’ people with both. Regardless, if you have either hypo or hperthyroid, you need to get your thyroid levels into the normal range to protect your long term health.

I hope that helps a little.

Laurel

[LaurelM]

in reply to: Headache/Intermittent Low Body Temperature in Euthyroid Pt. #1073632

Mitral valve prolapse can cause headaches. This is a usually benign heart valve condition. Many people who have it don’t even know they have it and most people will never need any treatment for it. Interestingly, there is an association of MPV with Grave’s disease. I don’t think they know yet why for certain there is the correlation but genetics are certainly suspect. I happen to have both. It has an association with many other diseases as well or can just be a stand alone condition. (My family also has a mild form of von Willebrand’s, a genetic clotting disorder, and MPV is also associated with vW as well.) I sometimes get palpitations with it but most of the time I forget I have it. It may be worth checking with your doctor as if it does cause symptoms, they can be treated.

[LaurelM]

in reply to: Anyone that tried natural methods/diet? #1073652

The American Autoimmune Related Disease Association at http://www.aarda.org has some pretty good information about autoimmunity and autoimmune diseases of which there are about 80-100. Grave’s disease is only one of them. There is some good information about the interplay of genetic predisposition and environmental triggers as well as other patient/research information.

Their mission statement:
The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.

[LaurelM]

in reply to: Graves Disease Options #1073476

The goal of treatment is not to cause hypothyroidism and just leave you in that state. Your thyroid levels will be monitored. If you do go into hypothyroid territory, then replacment thyroid is taken daily to keep you in the normal range. If you have a good doctor, they will also work at getting the ‘right’ normal for you.

I have a friend who due to thyroid cancer in her mid-20’s had to have the surgical removal of her thyroid as well as 2 rounds of RAI (way more potent dose than is giving for Grave’s). She was active and slender before the cancer and she is active and slender now nearly 15 years later. She has absolutely NO thyroid left in her body (as verified by yearly full body scans for 5 years after her treatment). She takes her tiny replacement thyroid pill every AM. She leads a normal life and feels fine. Incidently, her scar from the surgery is barely visible.

After watching her go through her treatment process, she was able to reassure me that both RAI and surgery were OK options. With Grave’s, we usually at least have some treatment choices and they all have the goal of bringing us back to a place of health and wellbeing.

[LaurelM]

in reply to: Hereditary? #1073461

I also didn’t know about a family history of thyroid issues either. After I was diagnosed, I found out my maternal grandmother had RAI when she was in her mid 40’s and had been on replacement thyroid ever since. As soon as I was diagnosed, my primary care/family medicine doc added the family history to my children’s medical records as well. Sometimes it is convenient to have one doctor as the primary care physician for the whole family ” title=”Very Happy” />
I would recommend to all of us with children to be sure that their medical records also have the family history. I had it explained to me that it was sort of like the question "Does your family have any history of heart disease or high blood pressure?". Important information to have, but it is only a predisposition and not a guarantee of disease.

I also understand that having ANY family history of autoimmune disease puts you at a slightly higher risk for autoimmune disease in general (not just thyroid) and very common things like allergies and eczema are also autoimmune diseases so, I don’t know what percentage of the population that ends up being but it must be huge. Anyway, beyond having it in my children’s (& nieces/nephews)records, it is not something that I worry about.

For a pregnant mom who has had Graves disease regardless of which treatment she has had or euthroid state, there is a very, very, very rare possibility of the autoantibodies (that can still hang out in the blood) crossing the placenta and triggering a transient (temporary) hyperthroid state in the newborn. For this reason, it is also important for an OB doc as well as whoever will be the baby’s doctor to be informed of the mother’s Graves history so that they can monitor the pregnancy/delivery/ & the first couple of months just a little more closely.

[LaurelM]

in reply to: HOW BAD IS IT BASED ON TESTS? #1073597

Hi Vegasgal & Phillyfan,

I read some recent posts where the facilitators talked about a recent study out of Europe that looked at long term use of ATDs (10+ years) which found them safe and effective. I am sure they could give you more information.

Also, regarding the betablockers, I too am an asmatic (now mild but terrible in childhood). I was started on propranolol when diagnosed and methimazole. I was able to taper off the betablocker after only a short while and then continued on ATDs for 18 months. I have been in remission since about 2/06 (stopped ATDs at that time).

Have you asked your endo how long you could expect to be on betablockers? It sounds like the answer to that question might influence your treatment decision.

Take care,

Laurel

[LaurelM]

in reply to: New here – ?? on how long can I take PTU? #1073451

Hi CMoore,

I think I read some recent posts where the board facilitators mentioned a new study out of Europe regarding long term use of ATDs. They concluded that long term treatment 10+ years was safe and effective. I am sure one of the faciltators could give you more information. I am currently in remission but I was kind of happy to read that. I personally like having lots of options.

Take Care,

Laurel

[Author]

Posts