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in reply to: breastfeeding moms, can you continue after surgery? #1176153

yes, I did. I checked with my pediatrician, he said fine. Most literature says to check with a doctor. I am sure you could find a doc somewhere, who might say not to breastfeed.
If a woman gets pregnant while taking it, you should stop immediately.
There are some other reasons for taking it, most primarily related to a nuclear accident, to protect the thyroid gland, and perhaps death. Different subject. And, of course, the dose is completely different.

Taking KI (potassium iodide) has been a routine pre-op prep for at least 60, 70 years, before a thyroidectomy, and nothing has changed about the regimen.

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in reply to: breastfeeding moms, can you continue after surgery? #1176151

Easy to understand the confusion. You may not realize it yet, but part of the prep for a thyroidectomy is to drink a few drops of Potassium Iodide in a glass of water, usually 5-7 days before the thyroidectomy. It shrinks the gland, and decreases the vascularity which is helpful for the surgeon.
I did not have radiation at all. That is wha I was referring to.
And, I had my surgery DECADES ago! But the experience is the same.
I think Alexis (adenine) had surgery and know she was breastfeeding, so check her posts.
Shirley

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in reply to: breastfeeding moms, can you continue after surgery? #1176149

Forgot to address your ? about hyPOthyroidism. When I was taking ATD’s, my endo watched carefully, me too, to be sure I just got to a safe place from hyper, but did not feel it was at all necessary to plunge me into a hypo state. It may happen,but with frequent labs and careful observation of how you are feeling, I don’t think it needs to happen. But I do not have any idea of being hypo and milk supply

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in reply to: breastfeeding moms, can you continue after surgery? #1176148

I have all good news for you from my experience. Had a baby, breastfeeding, Graves’ diagnosed when he was 3 months old, was on PTU not MMI, is only difference, milk supply never changed. Continued to feed during prep for surgery, the dose is very small (not like people take for exposure to radiation at the nuclear plant in Japan.) Fed him before surgery, my mom gave him a bottle of saved breast milk during and after surgery, then I was feeding him again. No problems at all.
Shirley

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in reply to: Now Endo says take 3 pills? #1176107

Oh my. Any chance you can call the on call doc, ask them to send a requisition to a lab so you can get your lab work this weekend? Or at least, on Monday, so you will have the results when you have your appointment. THe results are done and available in just a few hours.
I hope your mom is getting better. Not fun go go to hospital. Sounds like your plate is really full! I hope you are able to sleep tonight.
Shirley

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in reply to: Post RAI hives, possible thyroid storm? #1176145

Hi, with all respect to your doctor, I am wondering if he/she knows what a thyroid storm is. I’d review that with him/her again. Doubt if you had one, but you can discuss that with the doc. Hives are unrelated. Following is a brief description from the University of Wisconsin:

. When thyroid hormone levels become very high, the symptoms worsen and can result in a serious condition called thyroid storm or thyrotoxic crisis. One major sign of thyroid storm that differentiates it from ordinary hyperthyroidism is a marked elevation of body temperature, which may be as high as 105-106 F (40.5-41.1 C). Thyroid storm is unusual, but is a life-threatening emergency when it does occur. People experiencing symptoms of thyroid storm should be promptly taken to an emergency department.

So, as Naisly mentioned, and I want to reinforce, a thyroid storm is a medical emergency, and a person can easily die from this rare situation if not treated, and in a hospital.

Regarding your hives, that really is a puzzle. Did you receive any other meds, or are you taking any other new meds, that might have caused the hives? Food allergies you did not know about? I am not sure how long after receiving iodine a reaction could occur. The only ones I have seen have occurred very shortly after receiving iodine, and/or within hours afterward.

Do keep track of how you feel-not sure if feeling crappy means feeling hyper for you, or not. Because you had hives, and they were significant, I do understand why you are reluctant to go back on the meds. But do keep track of your blood pressure, check with the doc, for if it is high, you should be on some beta blocker. Maybe you and the doc will know more after you get your labs. I sure hope you feel better this weekend.
Shirley

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in reply to: Ugh, too good to be true?! #1176137

Gosh, I sure do hope that you have kind of sort of smooth sailing, anyway, things progress well for you. YOu are SO right! Selling/moving/buying a house is very stressful. ARe you moving to a different part of the world?
I’m wondering if you will be having to find new docs, and all the other stuff, that is also stressful, if you are in a new community. At least the interest rates are pretty nice, for both buyers and sellers.

I hope the shoe does not drop for you! It would be so nice. I had very smooth sailing with my ATD, after being misdiagnosed for quite a while (student, job, new baby, tired…) I got a pat on the head, told I was “too anxious, and I needed to calm down so my husband had a calm place to study.” You know how THAT went over with me. After my ATD, I had a thyroidectomy pretty quickly.

More about moving. I did all the sorting and packing, but the plus side was that I got to throw away a lot of stuff that my husband would have kept, and when we unpacked, I knew what was in the boxes. I have not moved for quite a while, but I tend to get rid of stuff on a regular basis. Sometimes, it is something I wish I had!
Good luck to you with your labs and how you feel.
Shirley

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in reply to: Ugh, too good to be true?! #1176135

To begin with, it would be helpful for you to know the range that that lab uses. Is it on the lab slip? From the info you have provided, all appear in the normal range value for that lab except the ALT. That’s ’cause there is an asterisk beside it. Several of the other tests are part of of a liver function panel, and they are all normal.
I’d be sure to check it out on Wednesday, get an explanation you can understand, ask if the doc is concern…or not concerned. Also look up, and check with your doc, symptoms of liver involvement. A lot of them mimic flu, and general aches and pains that can have multiple causes.
Wednesday will come pretty fast. If you are super concerned, call on Monday, leave a message to that affect, and reference the labs. Things are kinda crazy and disjointed, with communication at its’ worse, during this holiday season/
Shirley

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in reply to: on methimazole.a.month..too.soon.to.lower? #1176124

I think there is value in most of the comments stated in this thread. At this time, it really matters that Stacy does not want to take PTU. It makes sense to feel that way, for now, MMI is the preferred first line ATD. Stacy, does benedryl help your rash symptoms of itching? Or do you have itching. I may have missed something along the way that you said, but I am unsure if a doc told you to decrease MMI, or if you are thinking about doing it on your own? Sorry that I missed this.
I sure hope your endo on maty leave gets the results from the nurse. I don’t blame you a bit for wanting the continuity.

As an RN who has worked for many years, I can tell everyone that there is much confusion about the words “allergy,” “side effect,” and reaction. Examples abound. People misunderstand, and when they say they have an allergy to a drug, they frequently think that constipation, or a transient rash.
Some of these symptoms are “localized” and not “systemic.” This is simply a comment, not specifically related to ATD’s.

I sure am sorry, Stacy, and I hope by now you have some guidance from your doc who knows you. I think your thought that you have been on an ATD for only a month, is relevant, too. Completely understand you don’t want to return to hyper.
Shirley

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in reply to: on methimazole.a.month..too.soon.to.lower? #1176120

I took PTU with absolutely no trouble, and no side effects.
Shirley

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in reply to: what type of eye inflammation do you have? #1176069

Hi, oh yes, I remember now. Sorry for all that TEd conversation!
I have both fibrosis and fat. Perhaps you have neither, since the disease process for TED is a completely different etiology.
If you meet any surgeon who tells you, that in your case, removing any present orbital fat will help your proptosis, that is much simpler than an OD, and do check that out with him/her. I have a bulging eye, and so far, I have not decided to have an OD. My decision is affected by having many surgical procedures, some of them total failures. I can see now, I passed my drivers’ test, I wear sun glasses more than other people, and my eyes do not completely close at night. I am trying to weight those facts, against the risks with an OD. I feel differently different days. But right now, I am thinking no. IT is not necessary, and there are certainly risks with an OD.
Shirley

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in reply to: what type of eye inflammation do you have? #1176067

It is easy it see on the CT scan, the degree of fibrosis (swelling) of the muscles and also see the orbital fat if there is any
I guess you can say inflammation, but that infers that it will subside or get better, which is not the case with fat and fibrosis
I suggest askingg the doc to pull up the CD and show you the fibrotic muscled and fat if you are told that you have these things.
Shirley

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in reply to: So Graves’ Disease is a frame of mind??? #1176072

WW. That is really tough! I am wondering if it would be at all helpful for your mom to SEE your lab results that clearly say abnormal or out of range. Probably not, though, cUse it is very hard for me to imagine her feeling anything but concern and compassion for you, especially when she can see your physical symptoms, which is not Lways the case with us. Would it help if she read about it, or read some of the posts you select on this site?

And, Christmas is one of the most stressful times all too frequently for everyone. The old tapes of childhood come flying back, siblings sometimes regress to long ago grudges, and different generations of families are feeling fragmented on whom they should spend time with, while someone else is feeling left out. A bit of a cynical view, but that is what I see and experience.

I totally know how you feel at this stage, and when I was told I’d get better, I did not believe it.

Again, I am caught without remembering what stage you are in your treatment
Are you taking ATD’s and just beginning?
Shirley
So I am here to tell you my husband was not supportive at all, though it was not any different before I got graves. But my friends and mom were, and that helped, I think I remember saying frequently, “I am really sick” No normal person is hot like that, eating tons of food losing weight and much more.
I am hoping today you can find a kindred soul to spend time with and be nice to you

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in reply to: Merry Christmas #1176055

Gosh, Maryl, that is soooo thoughtful! Thank you so much. I am sure you will be a lifesaver in the future, for someone on the forum. It makes so much difference to feel that others understand. And then we don’t feel so alone. I think Graves’ and TED are very, very difficult to have, and life changing., that is for sure. I am sure you will be there for others! As you have been already.
Shirley

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in reply to: upper eyelid retraction surgery assymetric results? #1176059

Hi.
Did your mouth heal up well after the graft? I had the same procedure, both sides of palate, and both lower lids. All four were a total failure. It has taken over a year for one graft site to heal. My lower lids are as retracted as below, except now they are stiff, and not flexible at all. I had upper eyelid surgery recently, and the outcome is equally bad. So I have had six train wreck surgeries recently.
Yes, you can get upper eyelid surgery again after you have had it before.
I did, but the 2nd outcome was not as good as the first. I think in my case it was all surgeon related.
So I understand you are feeling about all of this. Me too.
Shirley

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