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in reply to: How much Methimazole is ok when Breastfeeding? #1176634

I WAS HOPING you’d see the post, Alexis. So so nice to know how much you have behind you! Have you ever gone back and read your posts agonizing on WHAT TO DO???? I am sure the little boy is sweet, sweet sweet.
Shlrley

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in reply to: Unsure about response from Endo re: Eye problems #1176621

Hi WWW, I do recall your other post, and not sure if I did/did not reply then. I have not checked before writing now.
Yes, the one eye doc with the comments of the “whites of your eyes” seems pretty weird to me. I can see the “whites” of every eye I have ever seen. There the pupil, and the rest of the eye is white! Duh.

I think if you do a little reliable reading, or even browse some posts here, you will find that red and scratchy (probably cause they are dry…) eyes are fairly common with Graves’. You treat the symptoms, primarily with preservative free eye drops,and I found warm packs were very comforting.
If you see that your vision is CHANGING, and you feel that your eyes are “worse” not better, it is good time to find a good eye doc, i recommend a neuro ophthalmologist, for a baseline exam. If you decide to do this be sure to mention you have Graves’ and would like to rule out TED, and/or have a baseline exam, so you have an objective measurement of your eyes.

Does this sound like a reasonable plan to you?
Shirley
And, yes, there is valid evidence that RAI can exacerbate TED, usually when a person has some eye changes before the RAI.
And, double yes, people can develop TED ANY TIME AT ALL the rest of their live after having Graves’. As Kimberly noted, I am a poster child for that.
My TED (which i knew absolutely NOTHING about, despite being an RN, and having Graves’ for years) presented itself over 4 decades later. So lucky that it did not interfere with my work career by happening sooner.
As it was, it DID interfere with my work, and I had to quit because of the double vision.. But I had already retired twice.
Write if questions
Shirley

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in reply to: How much Methimazole is ok when Breastfeeding? #1176632

Also, do not be concerned about questioning decisions. I would question such a big jump in the ATD, you sure don’t want to end up being a hypo blob, which, as hard as it is to imagine, hypo is terrible in a different way than hyper
Most docs tend to increase ATD VERY slowly, for this reason. With frequent labs.
Re side effects of MMI, I am not sure what you learned that you didn’t know.
Or, perhaps this step got missed completely. I find that docs depend more and more on pharmacists to go over meds and side effects, especially when a patient gets a new med. This is becoming the standard of care, rather than the exception, in health care.
shirley

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in reply to: How much Methimazole is ok when Breastfeeding? #1176631

I suggest you do read Kimberly’s reference. Nurse practitioners are great, really great. But I would not make abrupt decisions, based on what she said. I am hoping you get copies of your labs and visits. If you aren’t I strongly suggest this. Also, I am guessing that you had your labs drawn at a different lab, and it is possible that their ranges differ from your first lab.

Sounds like your baby and you are doing great, his labs are fine, and I do realize this phone call is disturbing. But labs are part of the story, not the whole thing. What also matters, are your symptoms, how you feel. Sounds like you are feeling much better , less hyper.

REalize I am just another poster-but I do not think you need to be overly concerned at this time. Your baby is fine, he is being followed closely. If I had waited all that time, I would have expected to see, and establish a relationship with the endocrinologist. Maybe, down the road, seeing a NP is fine. But (as an RN who has a ton of NP friends) I would take this whole situation very slowly, increase your ATD if you want to, and/or call the ENDO, explain this, and ask if you can increase it slowly, say to 10 mgm. A jump from 5 to 20 seems very extreme.

Another thought is,that, now that you have had your second opinion, maybe you have learned that you have more attention and thoughtfulness from your first endo. Just ’cause it is a 2nd opinion, does not mean it is better……
My two cents!
I was a breastfeeding mom, totally loved it. So go slowly with this, is my thinking…..
Shirley

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in reply to: my dosing style experiments #1176564

I gave a very brief explanation in my first email of 1/19, check that out.
Shirley

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in reply to: Apology #1176556

I totally get it! I understand. You are helping someone right now because of your post. It will be reassuring to another person, and all of us have felt the same way.
Shirley

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in reply to: thyroid/graves question (thyroidectomy & RAI treatment 34 years ago), San Diego area #1176587

Hi melch, as mentioned, I developed TED (Thyroid eye disease) over four decades after I had Graves at the age of 22-23. From my experience, I suggest you see a neuro ophthalmologist. I know there are a few in San Diego.
When you call, tell them your brief history, mentioning Graves’ long ago,
*double vision, eyes look different with one protruding, and the blurry. Be sure to mention the double vision. If you have to wait, try to have some doc order an orbital CT so you can go there with that already done, just a suggestion. This pretty much confirms that there is swelling of the eye muscles, (called fibrosis) and usually there is some increased orbital fat (some is normal)

I am reluctant to bother you with a lot of information at this time, until you are sure you have TED. Double vision is VERY DIFFICULT to experience,a nd interferes with work and driving and life. If your eyes are sensitive to light, or feel dry, sunglasses and eye drops and lubricant will be your friends. If you want to PM me you are welcome to do so, I’ll send my phone number so you can call.

I had the EXACT same experience at the beginning. Went to eye docs several times, thought it was my glasses, got two new RX, paid for new glasses, no change.

THese docs are very busy, frequently with a practice of lots of M.S. people too.
I had a great experience, and the neuro/op doc made referrals as appropriate.
Shirley

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in reply to: my dosing style experiments #1176559

Just an added note. There really is a bunch more to know about the bioavailability of a drug, and the purpose of why and when it is prescribed.

Lots of variables.For instance, there are compelling reasons why lots of other drugs need to be taken exactly as ordered to maintain the desired blood level, many antibiotics etc etc and more etc.
Shirley

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in reply to: my dosing style experiments #1176558

I think that is really helpful information! Certainly for you, and for others, too.
Maybe, for your own interest and for knowledge, check that out with a pharmacist, asking the half life of the drug. The half life is the amount of time that it takes for 1/2 of the drug to be eliminated from your body.The whole deal of this subject is more complex,with more terms, and there is more explanation, but this simple explanation might explain why the 3x dosing is working better for you. And, you can check it out and tell you endo, too.
Shirley
Agree c you about the labs. And also, about what the hell!

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in reply to: Taking Levoxyl and Prevacid. #1176520

Yep. I still suggest you discuss this with your pharmacist, a good one.
Shirley

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in reply to: Taking Levoxyl and Prevacid. #1176516

I am not sure. It is a proton pump inhibitor, not a vitamin or supplement. First, I’d talk with the pharmacist, one who seems like they rEALLY know, and ask clearly if Prevacid will interfere with the absorption of your Levoxyl.

Another idea might be to change to take your Levoxyl at bedtime.
So, clearly a conversation is in order and I think the pharmacist is a very good start, cause they are readily available. I don’t suggest asking any of the help at your endo’s office.

Shirley

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in reply to: Can’t get into new endo til mid-March–now what??! #1176418

Good self care.
Look forward to meeting you in the future.
Shirley

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in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176395

My mistake. I inadvertently typed:
Thyroid.com (not org.)
Just a frail human being, I guess! (:
Shirley

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in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176393

Interesting. The website I found was all advertisements of one guy. I will have to look it up again. Don’t recall his name. the web can be like that.
Will let you know.
s

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in reply to: Hi, I’m new, and newly diagnosed with Graves. #1176391

Hi,
I bet my bottom nickel that it is not an evidenced based, long term (which would essential for the study) with a large population and a control group…
This information regarding TSI and the right brain sounds downright silly.
I do not think his website is professional, nor do I respect his references.
But it has a catchy name. Just my two cents. Academic endocrine departments, and NIH might be better references to explore any research.
Shirley

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