[Ski]

in reply to: Levels normal, feel off! #1170327

Hi Susanne,

You are definitely not alone! There are many who say that there are elements of themselves that have not returned to “normal” since GD. I think it’s likely that some of those things are related to GD, and some of those things are not — not enough research has been done on this particular element of the disease, the continuing emotional issues in particular. You’ve got a good point about the root of your hypochondriac-type behavior (it took so long for your diagnosis that you are now, perhaps, hypervigilant to every possible symptom). That’s not necessarily a bad change, right? It’s probably not helping the anxiety though….

You might benefit from keeping a symptom diary, to see if you can dial in your thyroid hormone levels more precisely. There is a lot of room within “normal,” and a symptom diary can amplify some of the trends in what you’re going through. You can discuss a diary with your doctor and ask for small changes to see if they help you feel better. Small, small changes in replacement dose can end up making you feel better sometimes (occasionally we split doses, take a higher dose for part of the week, lower dose for the rest — I take half a pill on Sundays, that seems to be just right for me). Patience is required during the process, because you do need six weeks after changing a dose to get accurate blood test results, so each little change means another six week wait. Worth it, nonetheless — compare 12 or 18 weeks to feeling crummy for the rest of your days, and it doesn’t seem so bad…

Also, if you determine that some symptoms are NOT related to thyroid levels at all, you need to engage your doctor as a team member to figure out what it IS so you can get real relief.

I hope that helps!! I know it’s hard to be going on for SO long, feeling like less than yourself, but it’s something we’ve all gone through. I remember the first day I caught myself literally skipping across a parking lot, I broke out laughing because I finally had spontaneous energy again, and it had been so very long. Unfortunately, I was alone, so probably looked the proper idiot.

[Ski]

in reply to: GD and Quitting Smokeing #1170303

Actually, getting back to normal blood levels is only the first step on the road to normal anything with Graves’ — our body is unable to even start the healing process until the thyroid hormone levels are right — so it’s not all that uncommon for people to have a period of time after reaching stable, normal thyroid hormone levels in which they still feel unwell. It gets better as healing continues, and over time (as you correctly surmise) you DO heal completely and finally stop thinking about what is or isn’t related to Graves’ today…

[Ski]

in reply to: I need someone i can relate to.. #1170284

Oh and as for pregnancy — there are many women here who have Graves’ as well as beautiful, healthy children born after their treatment. Do a search on pregnancy and you’ll find a lot of great information. It’s important to have STABLE thyroid hormone levels before attempting pregnancy, for the best chance at success, so that may be a little way down the road for you. Once you become pregnant, you’ll want to draw together a team of medical professionals for the care of you and your baby, because it can qualify as a high-risk pregnancy, and the more people you have watching out for you under those circumstances, the better.

[Ski]

in reply to: I need someone i can relate to.. #1170283

Hi Kneenah!

My goodness, you have been through it, haven’t you? I’m so sorry to hear that you’re not feeling well — being on the meds will definitely help, but it’s kind of an art, finding the right dose to make your levels normal, and stable, so up front it’s a little frustrating. Add to that the fact that you really need to achieve normal, stable levels before your body will really begin to heal, and it becomes apparent that patience needs to be your best friend right now.

The emotional struggles are very common with Graves’, and they DO get better, and you DO feel better, eventually. At this point, the best plan is to remember that you’re lucky to have the right diagnosis, be grateful that you’ve begun treatment, and look for small improvements each day. You may have a bit of a seesaw ahead, as the med dose is “dialed in,” but you will get there. Closer every minute, as I used to say to my kids on long road trips.

The muscle pain may be due to the “muscle wasting” that can occur when you are hyperthyroid — it happens mostly in the large muscles, so the upper arms, upper back, and thighs are commonly very weak, and very sore, after a period of hyperthyroidism. I remember feeling like I was 100 years old, just trying to get up out of my car. As your levels fall out of the hyperthyroid range, and stay out of that range, your muscle mass will begin to return, and that’s the first step to healing. It means a bit of weight gain, but it’s GOOD weight gain. The trouble is that it’s “baby” muscle tissue, that needs very gentle, careful work in order to return to the healthy, strong muscle tissue you have lost. I’ve heard of people having to begin their “work out” (once they’re cleared by the doctor to begin working out again, of course) by lifting paperback books, because they had lost so much strength while hyperthyroid. If you can get to a physical therapist, that’d be a useful trip. They can help you find out where you are weak, and where you are strong, and develop a plan for building the weak muscles back up without hurting yourself.

Living with Graves’ is… oh, help me out here, everyone in the BB-world! I would say it’s different than it was before Graves’, it’s tough sometimes, it’s hard for other people to understand, but it has the power to connect us with some really wonderful people, and it also has the power to teach us a lot about ourselves. You’re going through a rough spot right now, but you’re on the road to being well, and you’ve found a good source of information and shoulders to cry on (yep, we know you need that ~ we’ve been there!) to support you along the way and share the knowledge you need to navigate your treatment.

Try not to let your fear isolate you, by the way. Be realistic about what you’re willing to tackle, and then do that. If it’s only an hour out of the house for a walk around the neighborhood, take that hour and enjoy the heck out of it. Do whatever’s manageable for you, and don’t apologize to anyone. If this were a different medical condition (for instance, if you broke a leg), everyone would bend over backward to help, but they don’t understand how ill you really are, and they won’t. You can try all day to explain, but most people won’t really get it. It doesn’t make them unfeeling, it’s just human nature. One of my best friends told me she had Graves’ Disease about a year before my diagnosis — told me a lot about it, we discussed it at length, and I remembered absolutely nothing a year later when my doctor told me I was also now dealing with Graves’ Disease. Unless you’re living it, you just don’t really understand.

So I hope this helps a little! Stick around, search up things that you have questions about — we’re here to help!

[Ski]

in reply to: GD and Quitting Smokeing #1170300

Hi Seanbro,

I quit smoking before I ended up with Graves’, so I can’t speak from personal experience on this one. I’ve also not heard others complain about this, but that doesn’t mean it hasn’t happened… Naturally, no one would tell you to go back to smoking, there is so much damage and death caused by cigarettes every day, that just can’t be the best answer.

It’d be a good idea to check in with your doctor and get your thyroid hormone levels tested — it may not have anything to do with quitting smoking, but if your thyroid hormone levels have changed, panic attacks could result. Our body’s requirement for thyroid hormone can change over time, due to age, activity level, hormonal shifts, weight — so it’s not beyond the scope of reason to think that quitting smoking could change things as well. It might change the way you absorb the replacement hormone, or the way your body uses it — by the way, I do not KNOW whether those things can happen as a result of quitting smoking, but in any event, the fact that you’re having these symptoms, and they could potentially track back to thyroid hormone levels, would be a good reason just to check. A blood test is easy enough. If your hormone levels are good, then take a look at your doctor and ask “what else could it be?” Get the doctor on your team and get some help figuring this out.

I hope you get some relief, soon!

[Ski]

in reply to: Graves and abdominal pain #1170236

Graves’ in young people is typically treated with meds at first — there are three potential treatments for Graves’ Disease, but the meds (we call them anti-thyroid drugs, or ATDs) are the only choice that doesn’t aim to destroy the thyroid, so it’s usually the first line treatment for young patients, in hopes that the meds work for them and at least postpone the need for destructive treatment.

I could go on for weeks about Graves’, but I’ll try to keep this short.

First, you mention “the one that she doesn’t make enough hormone,” so let’s quickly look at the thyroid hormone and the test results you may see. Thyroid hormone is the substance in our bloodstream that you could call the “fuel” of every cell. When you have Graves’, you have too much thyroid hormone in your bloodstream. It can be confusing, because the typical test that is run to check your thyroid function is the TSH level, which is actually thyroid-stimulating hormone, NOT thyroid hormone. TSH comes from the pituitary and is meant to “talk to” the thyroid in order to tell it how much thyroid hormone to release. There is a balance between these two, kind of like a seesaw. If the thyroid hormone level is high, the TSH level is low, and vice versa. So while you may see test results that indicate TSH is low, what that means is that there is too much thyroid hormone in the bloodstream.

In Graves’ disease, we have somehow developed autoantibodies that attack the thyroid, and PRETEND to be TSH, so they convince the thyroid to release more and more thyroid hormone. The “real” TSH level responds to this by dropping lower and lower, to stop the release, but the thyroid is responding to the intruders.

We can’t de-activate the autoantibodies that cause this reaction, so we must either control the release of thyroid hormone in another way (through the use of ATDs), or get rid of the thyroid entirely (through a treatment we call RAI, or by surgical removal of the thyroid), and just go on with replacement hormone taken in pill form.

I won’t go into the pros and cons of each, I’ll just say that there are things to consider for each treatment option. None are absolutely perfect, but all can return us to health. So learn as much as you can about the disease and the options, and you’ll be a good advocate for your daughter. While she’s hyperthyroid, it may be tough for her to navigate all of this, but I would encourage you to do the research WITH her, and involve her in the process. It’ll be important for her ultimate recovery to understand what’s going on and what her options are.

There are two types of ATDs, only one of which is typically recommended for young people. It’s generic name is methimazole, and in the U.S. the brand name is usually Tapazole. It’s typically given in a higher dose to start with, in order to bring the thyroid hormone levels down rapidly, and then the dose must be adjusted as symptoms change, so it’s going to involve lots of blood tests, fairly often, and that’s something you should both be prepared for. There are some symptoms to watch for early on, to be sure your daughter isn’t having any of the more serious side effects, so be vigilant, but please know that the incidence of the serious side effects is very, very low, so try not to obsess on it, but do be watchful. As her levels drop, she’ll likely need lower and lower doses in order to maintain a normal thyroid hormone level, and the stability will really help her to feel better. It does take a while — reaching normal levels is a milestone, but maintaining them is the critical step for healing to begin.

I hope this helps!

[Ski]

in reply to: Texas Grave’s disease patients #1170233

Hi CC,

I’ve been dealing with this, hanging out on this BB since 1998, going to conferences when I could since 2004, and I’ve never heard a whisper about the allergy you mention being a common one among GD patients.

Autoimmune diseases are complex conditions, they involve a lot of different chemical reactions in the body, but one thing we DO know is that there is a root, genetic defect in all patients of autoimmune disease (some people have the defect without having autoimmune disease, but EVERY autoimmune patient has the defect), and that must exist before anything else can bring on the symptoms. That’s the one constant.

The connection, the trigger that brings an onset of symptoms, is the “holy grail” of autoimmune conditions, and research has been going on for many, many years. The bottom line is that no clear frontrunner has emerged as a culprit for initiating that “leap.” Stress seems capable of playing a part, life’s hormonal shifts seem capable of playing a part (puberty, pregnancy, hormone changes after childbirth, menopause), and there may be nearly as many triggers as Graves’ patients, but no one has ever mentioned this particular cause in all my experience of Graves’, so I can’t speak to it specifically.

The particular information about your trigger may or may not be helpful as you navigate your healing process — once you have Graves’, you can’t “un-have it,” so the trigger becomes somewhat academic. The first action, the one that begins all the chemical processes resulting in Graves’ symptoms, is rather a different animal than things that might activate the antibodies once they exist in your system.

The antibodies can be activated by many things — by other illness (boosting the immune system to fight a cold or the flu also boosts your autoantibodies), by stress (the fear response triggers an adrenaline rush and activates the immune system) — but the thing that changes you from a person without autoimmune disease symptoms into a person with autoimmune disease symptoms involves creating the antibodies in the first place, so it would require a different type of action in the body.

It’s possible that if you find a way to avoid irritation, you may be able to avoid beginning a stress response that could trigger a boost in antibody action, so I’m not sure what can be done about this allergy specifically while the “season” is in, but anything you can do to feel more comfortable would probably be helpful.

[Ski]

in reply to: How long can you be on meds? #1170209

Hi Cynna,

One thing I think you ought to know is related to the fact that the research shows the more serious side effects (as Kimberly mentioned) occur most often at the very beginning of treatment, or on high doses.

If you stop taking the ATDs for a significant period of time, then start taking them again at some point, you have to define that as another “beginning of treatment,” so the risk of the more serious side effects is again an issue to consider (no matter the fact that you’ve already had a successful course of treatment with them).

Just something to consider as you navigate the process…

Oh also — there really is no “typical” Graves’ patient, we all choose different paths, for different reasons. It’s a nice thing that we have so many options for successful treatment, but it can be tough to decide between them when we’re ill. It’s nice that you’re feeling well now, so you can relax and take some time out to do all the research. You’re doing well now, and that may last for quite a while, but since the possibility exists for illness returning, it’d be a good idea to know all you can. Knowledge definitely helps in the decision process.

Long term ATDs are a valid treatment choice — some doctors may advise against it, but others are fully supportive, so it ends up being a choice you can make for yourself. Don’t let anyone bully you into something you don’t want to do.

[Ski]

in reply to: Graves’ disease #1170185

Hi Diana,

I wish you luck in finding a doctor that you like better! Try to remember that, during some phases of TED, there really isn’t a lot that a doctor can do, and sometimes interventions are just temporary fixes (or don’t work for a certain person), and sometimes they just aren’t recommended, so you may still need to wait through some discomfort. We understand, believe me!

Some of the better advice I’ve heard is to wear big sunglasses when you go out (it’s so much easier when you feel your eyes are hidden), to also wear a hat (protects your eyes and further obscures your eyes from others’ view), and to keep in mind that everyone is more attractive when they smile, so keep that smile on your face and realize this condition is not permanent! No matter how it works out for you, there is an end to TED, and there are corrective procedures that can bring your eyes closer to normal once you’ve reached the cold phase. Depending on the progression you experience, you may not be able to come back to absolutely the same look you had prior to TED, but procedures are better all the time and doctors get more proficient at those procedures, so you will have good options no matter what.

[Ski]

in reply to: Graves’ disease #1170184

Hi Shirley,

Just a comment on the links Kimberly put up — the first link was to the ASOPRS site, and when I put in the data for your metropolitan area (a lovely one, I might add), I found all 5 of the surgeons you’re probably talking about.

The second link Kimberly put up is to an “infant” physician registry we are beginning to build, which is attached to the GDATF site and includes patient input, so I’m not surprised it didn’t have information on your local surgeons. That will be a better resource as time goes by and folks contribute — as a matter of fact, when you get a spare minute, it’d be great if you could take a look and see if you can provide any info based on your own experiences for others who may be looking for it. I’m just sure you’ll have some excellent input!

[Ski]

in reply to: INS. PAYMENT FOR EYE OINTMENT AND DROPS? #1170179

I don’t think this suggestion applies to you, Shirley, but I’m putting it out there for others — if you have access to a medical expense savings account at work (where the money comes out of your paycheck pre-tax), those drops/gels qualify as medical expenses, so you can get reimbursed for them out of pre-tax money, which saves a bit. You should look into the rules for your specific plan before making the decision, to be absolutely certain you’ll be able to get reimbursement — also, right now is a good time to quantify annual expenses so you’d know how much to put away during the next annual cycle (typically companies run those on a January-December fiscal year, so you sign up along with your benefits open enrollment program). It’s not enormous savings, but it’s something.

[Ski]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064893

Hi Princessetta,

There is no “standard timeline” or even an absolute certainty that you’ll gain — if your hyperthyroidism was diagnosed and treated quickly, you may not have lost much muscle and so would not see much difference as it is replaced. Also, sometimes RAI takes a while to drop thyroid hormone levels, so try to keep a close eye on changes (which it appears you are) and eat smart, then you can keep gain to a minimum. If you slip into hypothyroid levels, it may be tough to keep from gaining, so get to the doctor whenever you suspect you’ve reached that milestone and get started on replacement hormone ASAP (if tests prove your hunch is correct, of course), because it takes a while to build up in your system so you can feel improvement. Try not to obsess over the whole thing — you simply don’t need one more thing to add stress. If you gain a little, go get some secondhand larger clothes (large enough NOT to “squeeze” while you’re wearing them), because you won’t need them for long but you do need to be comfortable. There’s nothing quite as depressing as being reminded every time you reach for something or bend.

I hope this helps!

[Ski]

in reply to: time frames for surgeries #1169655

Hi Hope1,

Your surgeon is smart to prepare you for muscle surgery — the fact is that the successful function of our eyes depends on very fine coordination between the two eyes, so in order to make that function perfect, it can easily require muscle surgery after decompression. Decompression is meant to create an eye socket large enough to accommodate your eyes. It will definitely provide relief. Then there may be some fine adjustments that need to be made in order to get the muscles attached to the eyes correctly, now that the eye position has shifted. Even after that, your lids may require a little surgery to finish the look. Everyone I’ve met that has done decompression and muscle surgery has been very pleased they took that step, and for the most part, they were surprised with the speed of recovery, so hopefully you can count on the same result. It’s infinitely better than the issues caused by your eyes being in the wrong position. I hope that helps, and good luck with your procedures!

[Ski]

in reply to: Restrictions After RAI #1169749

Hi Nikki,

This answer might come after you’ve resolved everything, but I wanted to make sure we had a good, basic response to the reasons behind the restrictions, because that helped me understand the differences of opinion that have occurred over the years — I had RAI in 1999, and I’ve seen some places that relax the restrictions I was told to observe, seen others that have even further restriction. Here are the basic elements to the restrictions.

First, there are two different types of exposure that occur for an RAI patient.

At first, when you take the RAI, your body takes a certain percentage of it up into the thyroid, and the remaining RAI is flushed out of your system within the first 48 hours, primarily through the fluid waste systems (saliva, urine, sweat). For those first 48 hours, restrictions will attempt to limit others’ exposure to your saliva, urine, or sweat, as the minute bits of RAI that may be within those fluids could, theoretically, be taken up into another person’s thyroid, if they ingested it, which could destroy part of their thyroid. Nothing like what the RAI patient expects to experience, but it could reduce thyroid function in a healthy person, so we attempt to make that exposure impossible. This is why we don’t share utensils, prepare food for others, and why we flush twice after urinating. It’s also the reason behind instructions to drink lots of fluids and urinate often — to get the excess flushed out as quickly as possible, and dilute the amount in the urine as much as possible.

After that first 48 hours, there is still radiation within your thyroid, and then that exposure becomes the primary issue. RAI has a half-life of 8 days, so every 8 days, the amount in your system is reduced by half. You can look at your dose level and make some calculations to figure out when the amount of radiation within your system is truly infinitesimal and no longer an issue. In the meantime, my doctor told me the rule was to consider time, and distance, in exposing others. You need to consider how near you hold someone (or a pet) near your neck — if you are going to be with someone for a long period of time, you should keep your distance in order to limit their exposure. If you need to be very, very near someone, limit the amount of time. Radiation is something that our body “builds up” over a lifetime, so the idea is just to minimize anyone’s exposure in order to limit the lifetime “dose.” Any excess exposure won’t create an immediate emergency, but may add up over a lifetime.

I hope that helps!

[Ski]

in reply to: Orbit Radiation or decompression #1169698

Hi Jules,

I’m jumping in here kind of late — been away from the BB for a while, but I’m trying to catch up. Having the head of your bed raised with bricks can really relieve your eye pressure — if it resulted in back issues for you, that may be a result of using pillows to further raise your head. If your mattress is flat, but angled, it shouldn’t have any effect on your back. As a matter of fact, a bed that only raises the head creates a pressure point at the “bend” that is more likely to cause issues with your back.

You’ve got good information so far, and it appears you’re on the right track. I wish you luck with your surgery — there are certainly many ways to accomplish the OD surgery, and it is important that you find some way to relieve the pressure surgically at this point in order to save your sight. You may want to make sure your surgeon is associated with ASOPRS (http://www.asoprs.org), as those doctors have specific training on TED-related issues.

(I hope I put the URL in correctly — I haven’t used this new BB much…)

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