[Ski]

in reply to: Ut oh…feeling a little like I use to…Update 5/28 #1071242

TSI is an antibody test. Trii….. is indeed T3. Free T3 shows the amount of T3 that is available to your cells for use. Some doctors think of total T3 as irrelevant because some of it may be bound to other substances in the blood and so is NOT free for use. As far as commenting on the actual levels, even with the normal ranges given here, we cannot make any statements about what that means, for many reasons. That’s for you to discuss with your medical professional. It’s all much more relevant when taken into consideration against all of your OTHER test results, which, again, even if you post them here, we cannot make judgments. We’re not medical professionals, we’re patients. If you don’t have a doctor who will take some time to discuss your tests, results, and what it all means, you definitely need a new doctor.

And again, if you have symptoms that are causing you problems, whether or not they can be easily attributed to your thyroid, your doctor should continue looking for the reasons or at least look for something that can give you relief until the real reasons are discovered. That could be your general practitioner or your endo. If the endo is convinced it’s not your thyroid, it’s not likely you’ll get much help there, since that is your known endocrine condition. Once they rule it out as the cause for your symptoms (right or wrong), they typically send you back to your regular doctor to figure it out. You and your regular doctor need to agree that it is NOT okay to go day after day feeling awful, and something needs to be done to help you.

[Ski]

in reply to: Ut oh…feeling a little like I use to…Update 5/28 #1071240

T3 can be volatile, it reflects the "dynamic" thyroid hormone that is actually used by the cells, so it can rise and fall several times in the day, from what I understand. Still, if your labs read low consistently, it might be something to discuss. I’m a little bit surprised the endo would dismiss it out of hand. If you are having symptoms, then some investigation is in order. The answer "it’s not your thyroid" shouldn’t be enough.

[Ski]

in reply to: Venting…DENIAL AGAIN! #1071164

Seeing your condition is a good thing, but remember, this is an issue of law. They’ll have no problem telling you that according to "The Rules," you don’t qualify, sorry ma’am. You know that ~ you’ve heard it before, I know ~ but it is SO important to know why you deserve the status you’re seeking, and where that fits within the rules of the system. That’s what they need to see most.

[Ski]

in reply to: Weaning from beta blocker? #1071058

When we stop taking beta blockers, it can cause a "rubber band" return of symptoms it’s been masking ~ in other words, you can notice a return of those symptoms at higher levels than when you began taking the beta blockers. That’s why we wean slowly. So yes, it may be because of that, but it should resolve quickly if that’s the only reason for it.

I am SO glad you found a doctor you like! SO important.

[Ski]

in reply to: I need some advice please. #1071091

Hi Liza,

We all understand, believe me. ” title=”Very Happy” /> Two things we hate most: not feeling like ourselves, and other people not believing we’re really sick.

Do yourself a favor and look for TINY improvements in each day, then celebrate those. In addition to that, since our energy is limited, spend that energy on things you LOVE, things that sustain you, things that give you something back. We need things that send our spirits soaring, and we need to drop things that suck the energy out of us with no return.

One tiny comment ~ there are three levels we typically have tested, they are T4, T3 and TSH. Just a little primer ~ T4 and T3 are thyroid hormone in our bloodstream, and TSH is the thyroid stimulating hormone that comes out of our pituitary gland in response to T3/T4 levels the pituitary "reads" in our bloodstream. For that reason, these levels will have an inverse relationship. High TSH should indicate low T3/T4, and vice versa. I’ve had doctors get confused between those (for instance, asking me to take MORE thyroid hormone replacement when my TSH was low), so it’s helpful to have a basic understanding of that for ourselves.

Please let us know how things are progressing for you, and ask ANYTHING that comes up. We’re happy to help.

[Ski]

in reply to: Info on atypical nodules anyone? #1071068

Nodules are pretty rare in Graves’ patients, so I’m not sure whether anyone here will have good info for you. I think that it might affect your treatment choice, ultimately, but the nodules might not be related to anything Graves’, it could just be her luck to have two things going on with her thyroid at once.

Not sure about doing the biopsy without anesthetic either though, eek! Do please let us know how this progresses for Cat, and each of you give the other BIG hugs from all of us!

[Ski]

in reply to: I am seeking a new Endo… #1071085

Hi mamabear,

Low T3 is not good, since T3 is the active form of thyroid hormone that your cells actually use. If you don’t have enough, your cells don’t have enough. Someone else just posted about this, so take a look at my answer there. Supplementing T3 can be very tricky, but if it’s what you need, it can be the miracle you’re looking for.

Keep in mind that your general practitioner MAY be able to help you through this, though the fact that they referred you out to an endocrinologist does indicate that they don’t feel particularly comfortable in this specific circumstance.

Receptionists like that DO need a wake-up call ~ Jake’s favorite statement to them is "do you realize that you are practicing medicine without a license by making this decision?" I like that. There are legal consequences to that behavior.

If you do not get a call from the doctor at any point in the near future, I would write a clear, concise letter about the way you were treated and the reason you’re leaving the practice. You pay their salary by being a patient. You don’t have to be treated badly.

[Ski]

in reply to: T3 therapy advise #1071072

T3 supplementation can be very helpful in cases where the patient has some difficulty converting T4 into T3 for use in the body. It can be tricky ~ I believe it needs to be taken several times a day, which is a little bit complicated, especially since it’s a thyroid hormone and so needs to be taken separate from some other substances, also typically on an empty stomach. In addition to that, T3 is potent stuff, so treatment with T3 is not taken lightly. Some people I know have begun T3 supplementation and felt great at first, only to find themselves in the throes of hyper symptoms several months hence. In your case, with a T3 level that tested low twice, several months apart, it is possible that you are one of those patients who do have an issue with conversion, so supplementation may be just what you’re looking for.

Make sure you take it as directed, and it also might be a good idea to keep a symptom diary that indicates the time of day when your symptoms occur, so you and your doctor have good data to make a decision upon as you proceed through this part of your treatment.

Good luck! Let us know how it’s going!

[Ski]

in reply to: I need some advice please. #1071087

That can be a really personal decision ~ first thing you should know is that everything takes a while when you’re treating Graves’ Disease. Don’t think your personal doctor is doing a bad job because things are moving slowly.

Many people are successfully treated by their personal physicians, but others feel better having an endocrinologist treating them. You may want to see an endocrinologist just so you’ve established a relationship with one, in case your treatment begins to have any complications, or if you have questions your personal doctor cannot answer.

Here’s the real issue. Some personal physicians have a lot of experience with patients who have Graves’ or other thyroid disorders, and they understand the peculiar nature of what we’re going through. Some do not. Some endocrinologists have a lot of experience with Graves’, and some do not. So asking a blanket question, "which is better," doesn’t give you a conclusive answer. It sounds as if your doctor is on track so far, but again, it’s probably a good idea just to MEET an endocrinologist, as this is exclusively in their realm. Do some research and find one that has experience with Graves’ patients, and who is willing to work WITH their patients, not "rule over" their patients, if you get my meaning. You can find these things out by asking the office staff over the phone, most of the time. Get a few minutes with a receptionist and also speak with one of the nurses, and you can tell a lot before you ever visit.

Once you’ve met and begun the relationship with an endo, you can decide for yourself which doctor you’d prefer to have as the main physician for your treatment. You can also ask them to confer in situations when you feel it’s necessary.

[Ski]

in reply to: Neonatal Graves Disease #1071095

Let me just say WOW and THANK YOU for sharing your story! You have definitely been one of the rare cases, over and over, haven’t you??

My heart goes out to you and Ava and Ella for all you’ve been through, and in such a short time!

I just want to clarify one thing so I understand completely ~ are you saying that your babies were born hyperthyroid, but only because YOUR antibodies crossed into their bloodstream and made them that way? In other words, after they are born, they are treated just for a short period of time, until your antibodies are no longer affecting them and their own thyroid function returns to normal? Or do they actually have lifelong Graves’ Disease of their own?

I see that your 11-year-old is currently an active Graves’ patient (and it’s lucky you already know the ropes!), but I’m curious about the situation with the infants.

It is great to get information like this here, one of our most common questions is "what happens if I get pregnant?" I realize your story is an extreme one, and doesn’t happen often, but it is so important to get these stories so we have some context to use for answering the question. I really appreciate the time you have spent to share the story.

Please let us know how the twins are doing, I want to give you and both of them an e-cuddle! And don’t leave out the rest of your kids, even the healthy ones ” title=”Wink” /> ~ cuddles all around!

[Ski]

in reply to: And so it begins… #1071561

Just writing for a quick clarification for those who are new ~ RAI (these days) typically aims to destroy the thyroid. In the past, doctors gave low-doses to see if they could return the thyroid to "normal" thyroid hormone release levels, so an RAI patient could have some period of time after the treatment without any meds at all (not even needing thyroid hormone replacement). As has occurred with Debbie, they have discovered that the remaining tissue can still be stimulated to overproduce thyroid hormone, necessitating further treatment. A large enough RAI dose, an ablative dose, should not result in a future hyperthyroid episode.

Debbie ~ I’m glad you’ve found us for this round! I’ll be hoping for the best, whatever you choose!

[Ski]

in reply to: Graves Disease and Dental issues #1071169

During the time we are hyperthyroid, we lose bone mass. If we lose enough bone mass, it can lead to osteoporosis. Once we have been treated, we regain bone mass, and we have hope of getting back to normal. A bone scan is important if you’ve been hyperthyroid for a long period of time before diagnosis and treatment. Since teeth are made of bone tissue (aren’t they?), they can also suffer when we lose bone mass, but those issues should resolve once we’ve had successful treatment. Other than that, I don’t believe there are specific issues with teeth that are related to Graves’ Disease.

Please note that when you see the dentist for any procedure requiring anesthetic, you want to ask for the anesthetic WITHOUT epinephrine. It’s equivalent to adrenaline, and it can make us feel super-hyper. NO fun. The epinephrine makes the anesthetic act quicker and last longer, so if you are having a complicated procedure done, they may have to "boost" the anesthetic at some point during the procedure, but it’s worth it for your own comfort.

[Ski]

in reply to: Graves Dermopathy – anyone?? #1071179

I don’t think a podiatrist would be the right doctor for pretibial myxedema. Podiatry relates more to the structure of the foot, ankle and leg. People we’ve heard from here see their dermatologist to treat pretibial myxedema.

The way I’ve heard it described is that it looks like an orange-rind, but the skin is purplish. Raised, itchy. Not dry or cracked, that I know of, but I think it can get that way if it’s mistreated (if you itch it a LOT). You might find some interesting images in a websearch.

[Ski]

in reply to: Ut oh…feeling a little like I use to…Update 5/28 #1071233

If your symptoms got bad enough that you sought medical help, it’s definitely something. What it is, I don’t know, but the investigation is important. I would agree that sleep is extremely important ~ we had a doctor speak at one of the conferences about sleep disorders, and he said it’s important to nip sleep problems in the bud before they cross over from a purely physical issue into an emotional one. Once we’ve got it in our minds that "I can’t sleep," it makes it many times harder to break through and solve the problem. Do whatever you have to do to get rest, and remember too that laying in bed in a quiet room, keeping yourself still, is nearly as good for your body as full sleep, so don’t fret if it doesn’t feel like you’re falling asleep enough. Some things that may help: avoid alcohol or caffeine in the evening, have a hot bath or shower and then lay down with lights low, start early to "wind down" so your body is ready for sleep, use lavender scented body wash. I know it’s tough with kids in the house ~ we must always be poised for action, mustn’t we? ~ but your health is worth the try. Over-the-counter sleep aids may be helpful, and typically are not habit forming. You might want to start with a smaller dose than is recommended, since you may be called upon by the kids in the night. It may just be enough to send you into sleep, which is the biggest hurdle.

Wishing you luck at the endo Tuesday!

[Ski]

in reply to: Graves Dermopathy – anyone?? #1071176

I know you’ll get some responses from people who have dealt with it ~ we call it pretibial myxedema, but it seems we’re talking about the same thing. This condition is due to yet another set of antibodies that come along with Graves’, so the activity can come and go as conditions change. Some people never experience it, others are plagued with it. I’m not sure you’re doing yourself any favors by using the steroids sparingly. I think the steroids have a chance to reduce all the inflammation and help the healing to begin, so using just a little at a time may prolong the activity, but I’m not an expert on this by any means. If your dermatologist has not made the treatment rationale clear to you, it’d be a good idea to schedule time for an in-depth discussion.

Do a search on posts for ‘pretibial myxedema’ (search the old board too) and I’ll bet you find some valuable info, at least for keeping yourself comfortable. I understand this itches like CRAZY.

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