[Ski]

in reply to: UPPER EYELID SURGERY TODAY #1174199

PSylo wrote:

Robboford,
I am still trying to understand the TED. My graves disease started with issues with my eyes. My endo and opthamolgist, both say that they have seen worse and that we will have to wait and see.
Everyone seems so vague and that there really is not anything we can do.
I was just placed on meds for hyperthyroid (Sept 7th)
Any words of advise or enlightenment? Is there a possibility that my eyes will go back to normal…????

Pam

Hi Pam,

Just wanted to add a little bit of info for you — the truth is that there isn’t much your doctors can do, while you wait through the “hot” phase as Kimberly described. For patients who have severe symptoms that may threaten their eyesight (such high amounts of swelling that the optic nerve could be compressed), steroids and/or directed radiation can be used, but the risks associated with those are high, so that’s typically reserved for the very worst cases. Any changes in our eyes is traumatic, there’s so much more associated with our eyes than just seeing — it’s how people see us, how we feel about ourselves — so try to minimize the changes with “camouflage,” using sunglasses (actually, that’s good protection for your eyes as well), hats, and SMILES (we always look better when we’re smiling!).

There is a distinct possibility that your eyes will return to normal, it happens to many. Happened to me. I hope that helps!

[Ski]

in reply to: UPPER EYELID SURGERY TODAY #1174193

Hi Shirley!

Sorry I’ve been away while you’re going through all this — sounds like you’re still battling the pain, I’m so sorry to hear you’re going through this.

I’ll send healing thoughts your way, I really hope things start to resolve WELL for you!

Hugs,
Ski

[Ski]

in reply to: Just diagnosed #1174275

re “huge problems” having Hashimoto’s and Graves’ Disease: the fact is that we are not healthy until we have reached a normal thyroid hormone level and stabilized there for some period of time (which is a different period of time for everybody, depending on various factors). If we never truly stabilize, we are in a constant state of ill health, and the body never gets a chance to recover. I think that’s probably what Bobbi was referring to.

[Ski]

in reply to: New Grave’s Diagnosee #1174299

Welcome to you both! I’m glad you’ve already found helpful information. The most important thing to know is that you WILL get better. We have several good treatment options. DO learn everything you can about what is going on in your body, knowledge is power, and it helps to limit the fear you may feel about this news. You’re obviously in the right place to learn, and we’re glad you found us.

Feel free to ask anything that comes up, that’s why we’re here!

[Ski]

in reply to: Full-time job #1174325

Hi Terrilyn,

I don’t think you’ve made a mistake – I think you can handle this. It’s a big change from what you’ve been doing, so there will be a period of time while you get used to this new reality.

Have your thyroid hormone levels been stable in the normal range for all this time? If so, I really wonder why you’re not feeling better. You may want to find a physical therapist in order to check your muscle strength and perhaps get a regimen to improve it, that can do a lot to bring you back to feeling well and also bring back your overall stamina.

I’ve worked full time throughout my disease and healing — I was diagnosed in early 1998 and went through 2 RAI treatments. I think I achieved normal levels in 2003-ish, and I did feel remarkably better when I reached that point, but I was able to work in the meantime. I know that different people recover in different ways, and we are all affected differently by hyperthyroidism, so the best thing you can do for yourself at this point is (1) ensure that you’re at normal, stable thyroid hormone levels (and that they are right FOR YOU), and (2) get a full physical examination to determine whether there’s something else going on that you can take care of separately.

[Ski]

in reply to: Side effects of Methimazole #1174307

A week is very early in the process — it can take a while just to flush the excess thyroid hormone out of your system, and until things level out, it’s likely that you’ll feel a little weird. Talk with your doctor about how often they recommend having labs done, and make sure you comply, then work with your dose that way. The best way to find your best dose is to do everything as recommended, then they are working with accurate information as they adjust your dose levels to find the one that keeps you comfortably in the normal range.

Remember that your body has, quite literally, been under assault by excess thyroid hormone. It’s going to require healing, before you feel truly well. You can’t start to heal until you’ve found normal levels and stabilized there.

[Ski]

in reply to: Newbie here….questions #1172352

Hi Adele,

We’re glad you found us! Sorry you had to join the club.

Graves’ can be quite an adventure — some people find their best form of treatment quickly, others have more trouble and need to explore other options, but we are very fortunate to HAVE more than one option, and you’re doing the right thing by doing research. When you’re online, try to make sure that you’re visiting sites with some kind of medical “seal of approval,” because literally anyone with a computer can launch a website and say anything they want to say, without having to prove it. A lot of junk can SOUND plausible. We try to err on the side of “proven,” though of course discussions about how to make your body healthier overall are helpful in any case. A healthier body can handle things better, no question.

Let us know as things come up, we’ll be happy to help!

[Ski]

in reply to: Cannot Believe it… #1172316

Hair loss is so depressing! The good news is that if it’s due to Graves’, or imbalanced thyroid hormone levels, it’ll stop once your levels are normal AND stable. It’s not really a side effect of the meds, it’s our body “protecting” us by removing resources from “non-essential” functions (like growing hair — wish it’d ask ME before deciding what’s non-essential!) while thyroid hormone levels are either outside the normal range OR changing rapidly (even if it’s in the right direction), because both are abnormal conditions. Once thyroid hormone levels normalize, and stabilize, the body allows resources to be provided for proper hair growth. Phew!

[Ski]

in reply to: ATD dosage change effects #1172393

ATDs can affect things pretty rapidly, so it’d be wise to keep an eye on your symptoms and keep in touch with your doctor if they continue unabated, or get worse.

[Ski]

in reply to: Ahhhhhh! #1172381

Hi leannedro,

I am SO SORRY to hear that you’re in such a bad way! All of what you’re going through can be traced right back to unbalanced thyroid levels, so I hope you find a way to get help — it’s true that, untreated, you risk FAR worse (the storm you refer to is the most severe consequence, but you’re also damaging your body’s tissues every moment you remain hyperthyroid), so whatever it takes, please get some treatment. If you have a university hospital nearby, you may be able to get care there, or there could be a mechanism for assistance for uninsured in your area. Check this link for possibilities:

http://www.patientadvocate.org/report.php

It’s also true that treatment is no “magic bullet,” and there’s still going to be some time before you feel truly well, but you NEED to get on the right road. You’re literally risking your life. Before there were successful treatments for Graves’, it was fatal 50% of the time — that’s staggering.

It’s possible that you could get either surgery or RAI, then manage with replacement hormone, which is FAR easier (and cheaper) than managing hyperthyroid levels with ATDs, plus you don’t risk spikes into hyperthyroidism when things get rough (just when you need it least…).

Please let us know how it’s going for you! I’m so glad you stopped by to vent.

[Ski]

in reply to: Thyroid Surgery #1172347

Understood — I think Shirley was just trying to clarify for others, who may go out looking for an “endocrine surgeon” as their doctor of preference, when that’s not necessarily the term to use. Our typical recommendations are to find a surgeon who does a lot of thyroidectomies (specifically), with low complication rates. Given those parameters, success and satisfaction rates for surgery are very high.

[Ski]

in reply to: My decision #1172324

I just wanted to add my voice to the chorus! I don’t think I can say it any better than it’s already been said, this is a fabulous community!

Just wanted to make one quick comment about the genetic component of Graves’ — what we know is that the genetic propensity we pass on is the potential for some kind of autoimmune disease, not necessarily Graves’. Millions of people pass along the same “genetic defect,” but not every child of a Graves’ patient gets Graves’ (or any autoimmune disease, for that matter). It could show itself through any number of autoimmune diseases (staggering, really, the list…), or they could never end up with anything. I have two siblings, both in their mid-50s, and neither has ever presented with an autoimmune disease, but we all have the “genetic defect.” That is one component of getting some autoimmune disease. Other components include stress, perhaps environmental triggers, and other unknowns. Hopefully someday the researchers will figure out how to deactivate that defect (they ARE looking into it even as we speak, though saying they’re anywhere near figuring out that magic step is premature, to say the least), but in the meantime, I think it’s important to know where the actual connection lies.

Anyway — the most important message I wanted to impart was that your decision, made with your husband, is YOUR BUSINESS and no one else’s, as you well know. I’m sure you hate telling people about your decision simply because everyone wants to “talk you out of it,” and I hope you find some peace about that over time. I doubt the conversations will stop. People can be so persistent! Try to remember they’re making these arguments out of love, maybe that will help, but let them know that if they love you, they’ll respect your decision and stop trying to change it.

[Ski]

in reply to: Recently Diagnosed #1172377

You’ve got good answers to why this might be called “Early Graves,” so I’m going to address the question about what to expect in the next few months.

The first thing every patient with abnormal thyroid hormones needs to know is that getting ill was a slow process, and getting well is also a slow process — no matter what issue you’re dealing with. There isn’t a quick way to put all the pieces back in order, but the advantage you have is knowing what’s going on, knowing how to monitor yourself, and having a team of medical professionals to help.

Hyperthyroidism affects every cell in the body, so can create symptoms of almost every type — very unique in each of us, with some striking similarities (always hot, tremors, anxiety, high heart rate), but also with some WILDLY different symptoms from patient to patient. You won’t actually be back to yourself again until the assault has stopped, plus your body’s tissues have had some time at normal, stable levels in order to function correctly and fully heal.

As you figure out exactly what issue you’re facing, try and be grateful for every step in the right direction, it’ll definitely help! Attitude can really rule the day.

Once you really know, then it becomes a bit of a research project. Find out what your options are, and try to get as much detail as possible so you can be comfortable with your decision.

Throughout the process, you need to be gentle to yourself, so feed your soul and starve the workhorse.

[Ski]

in reply to: Sorry, but I need to vent! #1171817

Hi Barb,

RAI is not an immediate solution to hyperthyroidism — the body has literally been under assault with hyperthyroid levels, and it needs to fully return to normal levels before any significant healing can begin. Try to look at the process one day at a time — today will be a little bit better than yesterday, and so on, rather than a dramatic shift to “well.” I was told that RAI can take up to six weeks to do the bulk of its work, but more recent practice usually gives a high enough dose to work pretty quickly, so that may not be a concern. Still, it takes some time. It can take up to six weeks just to flush out the excess thyroid hormone that was in your body on the day of treatment. Remember how you gradually felt ill? It’s a little like that with getting well, but you’re heading in the right direction, so try to be grateful for that.

You WILL get to health, I know that!

[Ski]

in reply to: Hair loss #1170405

Hair loss is less a function of how sick we are than proof that our thyroid hormone levels are still moving. The body interprets an imbalance or unusual fluctuation of thyroid hormone levels as an emergency, and as a result it removes support from the “non-essential” functions in the body, like growing hair and fingernails. This applies even when levels are moving from an imbalance into a correct balance — it’s just the movement of levels that triggers the reaction, because humans “in the wild” wouldn’t typically be experiencing thyroid hormone shifts in that manner, so protective mechanisms are triggered in order to keep us healthy while this unusual phenomenon is occurring.

As your levels stabilize within the normal range, the hair loss typically slows and ultimately goes back to our “usual” level of hair loss (very little), but remember that every time we change our replacement hormone dose, it may trigger a short period of some amount of hair loss more than usual. Usually it is not ever as extreme as it may have been while levels were radically out of the norm, and resolves once levels stabilize for a while.

If you are early in the process of figuring out a normal thyroid hormone replacement dose, you may want to do yourself a psychological favor and just get a nice, short haircut that doesn’t require too much “messing with it,” so you can minimize the hair loss overall by minimizing the stress on it, but also to minimize the appearance of hair “all over the place” when it may be shedding more than usual. You can grow it back when you’ve reached stability, that’s the good thing about hair.

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