[mickiko]

in reply to: TED & Block and Replace Therapy #1177269

i’m very much interested in learning more about “block and replace” or “add back” treatment, so thank you so much for posting on these topics!!! it is very much appreciated harpy! thanks!

[mickiko]

in reply to: bee sting / bee venom therapy? pls share failed cases or success stories if there are any? #1175581

ok. very fair. i understand. there haven’t been any responses so, i would agree, this therapy really isn’t valid whatsoever….but interesting. perhaps she had a very special situation or maybe she didn’t even have graves’. i’ll get more info later when things have stabalized for her….she just had a baby.

[mickiko]

in reply to: low iodine AND low cholesterol diet. what fish is low in iodine but is high in good fats? freshwater? #1174156

Hi Shirley! thx for your response!

i did think about a possible infection, similar to traveler’s diarrhea…but those usually resolve in 2 weeks or so and mine had been going on 3 weeks+. also, later i realized that the diarrhea was a hyperthyroid symptom of mine. when i finally got diagnosed and started on PTU, my symptoms would improve but symptoms like palpitations and esp the diarrhea, would come back about 6-7 hours after my last PTU dose. the hyperthyroidism was “breaking through” my PTU dose so my doctor shortened the interval of my dose while also increasing the dose, so instead of twice a day it was changed to 3x/day.

so, those breakthrough symptoms got me thinking about the diarrhea i had after the cruise….I was just thinking that the inadvertent increased iodine consumption during the trip may have caused/allowed my body to make more thyroxine hormone resulting in me becoming more hyperthyroid, resulting in more hyperthyroid symptoms like diarrhea, increased frequency of stool, etc. of course, i could have just developed the diarrhea anyways from the then undiagnosed graves’ disease taking it’s natural course and it was just coincidental that i went on a cruise when my symptoms got worse. but looking back, i had symptoms for quite some time, 6 months or so, but they got significantly worse or enhanced after the cruise. for example, i had also lost most of my weight in the 2 months after the cruise, when prior to the cruise, i had just lost a little bit over the previous 6 months.

I am seeing an endocrinologist and I’m on propranolol 10mg 3x/day, as well as PTU. i am not one to think that diet alone could change anything. that i know would be dangerous. my doctor did tell me that a low iodine diet would help me; she initiated this info herself; mostly saying to avoid seafood and seaweed. and this recommendation was knowing she was NOT going to order any uptake scan on me (because she didn’t feel it was necessary because she didn’t feel any nodules in my neck). i know a LID (low iodine diet) is usually recommended especially in the weeks before an uptake scan is done.

it’s just that, fish is kind of hard to avoid because my husband is eating it almost every other day to improve his good cholesterol (HDL). i don’t want to have a no iodine diet or really even a very low iodine diet….i’m just not sure if having fish 3-4x / week would increase the iodine in my diet way more than i should given that i have graves’….so that’s why i was thinking that a low-iodine diet to compensate for the high amount of iodine i was getting in the fish would even things out in any way. i don’t want to sabotage my husband’s diet and he doesn’t want to sabotage mine, so i’m trying to find something that can help the both of us. i’m getting sick of just chicken. husband is having limited red meat at this time to reduce his cholesterol.

anyways, i did think about us both seeing a dietician together. that’s probably the way to go. i’ll let everyone know what he/she says. in the meantime, any other suggestions/ideas out there about fishes low in iodine but ample in omega-3 fatty acids?

[mickiko]

in reply to: TRAb related questions. 1. Anyone know about rising TRAb, TSI, or TPO-Ab while T3 & T4 are going back to normal on ATDs? 2. Can thyroidectomy decrease chance of developing TED? 3. Did your docter recommend a thryoidectomy because you had rising TRAb? #1174147

I know some of you out there have had a thyroidectomy and still got TED….and like I said, I haven’t seen anything out there saying that thyroidectomy could prevent TED from happening or getting worse. It’s just that this article says that TRAb levels may disappear after thyroidectomy for most people so why couldn’t it prevent TED then? There must be a reason….just wondering if anyone knows? Could the extra-thyroidal TSH receptors act as the antigen and be the culprit?

[mickiko]

in reply to: TRAb vs TSI #1173741

Also, I’ve noticed that my TSI levels and the lab’s normal range for TSI is different than others on this forum.

My TSI level is 198 with normal being < 140%

[mickiko]

in reply to: Question about TSI result #1173340

Wow! Thank you Kimberly! This is the answer I was looking for. I had read the suggestions that RAI could worsen the development of GO (Graves’ Ophthalmopathy) compared to the other treatment options….but was wondering what the mechanism was. This makes sense!

Did you pick up the stat “with the disappearance of TRAb in 70–80% of the patients after 18 months”???

That’s what my Endo said but I wasn’t sure if I should believe such a high percentage! Well, actually what she said was, 70% of people treated with ATDs can have a durable remission after ~18 mos of treatment. I later learned that this rate is dependent on geography. Why? Is it compliance to meds??

Anyways, this EJE study says TRAb disappeared in 70-80% but it doesn’t say for how long. It does say “After stopping therapy, around 40% of medically treated patients experienced a reactivation of TSH-receptor autoimmunity and became hyperthyroid again.” So, that’s a bummmer…..but I guess overall, 60% of patient’s will have long lasting remission?

[mickiko]

in reply to: Ophthalmologist referral in Los Angeles? #1173327

Thank you so much! I am learning a great deal here.
Your suggestions are very helpful. Thanks!!!

[mickiko]

in reply to: newly diagnosed while planning to conceive #1173322

Thank you Bobbi, Alexis, and Caro!
I really appreciate your responses.

Bobbi –
I really like your suggestion about talking to the Pediatrician about the harmful effects of ATDs during gestation. Thank you.

In some way, hearing 3 different endocrinologist giving 3 different answers made me feel better rather than more confused. It means, that there is no one right answer and that anyone of these treatment options are very reasonable to choose. Also, I learned from the differing opinions because that way, I got to hear all the pros/cons about each option. I just want to be as educated as possible so that I can make the right decision for me. Hearing other people’s stories, from a world I do not know at all, is very reassuring to me. So, thank you so much for your support within this foundation! It is so calming, especially, for someone so newly diagnosed.

Alexis –
You telling me about your friend who had Graves’ who then had 4 healthy kids she breastfed while on ATDs, was reassuring to me. Although, I do realize that if something happened to my future child, the statistics wouldn’t matter, because for me, it’s 100%. Also, hearing that you got euthyroid on Methimazole (MMI) in just 7 weeks was also comforting. It validates what my Endo told me, that it COULD be possible.

I am going to keep taking the ATDs for now. I’m very curious to see how I’m responding to them when I get my followup lab tests in just a couple weeks. I’m also going to educate myself a little more about what the exact statistics are to fetal harm from the ATDs. Thank you, Alexis!

Caro – Thank you for sharing your story with me!! Yes, you are right. The main priority is your own health. It would be awful, if you took the risk and then it happened to you. So, I completely understand. It’s a scary thing. I need to read up a little more on what the exact statistics/risks are. I should probably talk to my OB about the risks and Bobbi’s suggestion of talking to a Pediatrician, as they may have seen the results of bad effects. But one of the reasons I don’t want to wait to long is because I already have a 2 year old at home. I don’t want a big gap b/t her and her potential sibling. My brother and I are 5 years apart and don’t have a great relationship with him. He sees me more like a 3rd parent rather than a sister.

Caro, so does that mean you are not yet euthyroid on MMI? How long has it been? My doctor said the usual max is 18 months.

I agree with you, Caro. There is a reason these things happen. There is a reason we got diagnosed before getting pregnant in the first place.

Just as an FYI…my doctor and I had a thorough discussion on whether to start with MMI or PTU. I know it is standard practice to start on MMI, unless you are in the first trimester you go on PTU. But she put me on PTU because there is a chance I may start trying to get pregnant soon when/if I become euthyroid. She had a patient that started on MMI and then switched to PTU when she was planning to conceive, but she wasn’t responding to PTU……so, she told me she just wished she knew that upfront.

Thank you all! I am learning so much! I am feeling more confident about my situation. I will keep you guys posted and I am looking forward to following your posts/threads, as well!

mk

[mickiko]

in reply to: newly diagnosed while planning to conceive #1173321

Thank you Bobbi, Alexis, and Caro!
I really appreciate your responses.

Bobbi –
I really like your suggestion about talking to the Pediatrician about the harmful effects of ATDs during gestation. Thank you.

In some way, hearing 3 different endocrinologist giving 3 different answers made me feel better rather than more confused. It means, that there is no one right answer and that anyone of these treatment options are very reasonable to choose. Also, I learned from the differing opinions because that way, I got to hear all the pros/cons about each option. I just want to be as educated as possible so that I can make the right decision for me. Hearing other people’s stories, from a world I do not know at all, is very reassuring to me. So, thank you so much for your support within this foundation! It is so calming, especially, for someone so newly diagnosed.

Alexis –
You telling me about your friend who had Graves’ who then had 4 healthy kids she breastfed while on ATDs, was reassuring to me. Although, I do realize that if something happened to my future child, the statistics wouldn’t matter, because for me, it’s 100%. Also, hearing that you got euthyroid on Methimazole (MMI) in just 7 weeks was also comforting. It validates what my Endo told me, that it COULD be possible.

I am going to keep taking the ATDs for now. I’m very curious to see how I’m responding to them when I get my followup lab tests in just a couple weeks. I’m also going to educate myself a little more about what the exact statistics are to fetal harm from the ATDs. Thank you, Alexis!

Caro – Thank you for sharing your story with me!! Yes, you are right. The main priority is your own health. It would be awful, if you took the risk and then it happened to you. So, I completely understand. It’s a scary thing. I need to read up a little more on what the exact statistics/risks are. I should probably talk to my OB about the risks and Bobbi’s suggestion of talking to a Pediatrician, as they may have seen the results of bad effects. But one of the reasons I don’t want to wait to long is because I already have a 2 year old at home. I don’t want a big gap b/t her and her potential sibling. My brother and I are 5 years apart and don’t have a great relationship with him. He sees me more like a 3rd parent rather than a sister.

Caro, so does that mean you are not yet euthyroid on MMI? How long has it been? My doctor said the usual max is 18 months.

I agree with you, Caro. There is a reason these things happen. There is a reason we got diagnosed before getting pregnant in the first place.

Just as an FYI…my doctor and I had a thorough discussion on whether to start with MMI or PTU. I know it is standard practice to start on MMI, unless you are in the first trimester you go on PTU. But she put me on PTU because there is a chance I may start trying to get pregnant soon when/if I become euthyroid. She had a patient that started on MMI and then switched to PTU when she was planning to conceive, but she wasn’t responding to PTU……so, she told me she just wished she knew that upfront.

Thank you all! I am learning so much! I am feeling more confident about my situation. I will keep you guys posted and I am looking forward to following your posts/threads, as well!

mk

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