[Ski]

in reply to: Mood Issues #1069890

Great input so far ~ the only thing I can add is that, once you find a new doctor, you may be able to have labs drawn locally and transmitted to your doctor so that you don’t have to make the long drive each time your husband needs to see where his levels are. With successful treatment, all of his rage should subside, but I know it’s tough in the meantime. I am SO calm most of the time, but when I was actively hyperthyroid, you wouldn’t have wanted to know me. It feels like a train overtaking us when the rage begins, and believe me, we CANNOT stop it sometimes. It is largely chemical, though it "looks" emotional. Knowing that MAY help, but it doesn’t end the rages, and it doesn’t make you feel much better when they come on, I know.

Jake has my favorite method for dealing with it, though it takes someone who is emotionally aware in the moment, and that can be rare ~ he would find himself in the midst of a rage, realize that it was irrational, and he would start yelling something different instead. He would start yelling "I LOVE YOU! I DON’T WANT TO HURT YOU! I’M NOT EVEN ALL THAT ANGRY! I DON’T KNOW HOW TO STOP THIS!" It sounds silly, but maybe that’s the point ~ it injects some silliness in the moment and breaks the nasty tension.

Do what you need to do for yourself to get through this, and please understand that he’s still the man you’ve always known. You’ll find that man again when his levels are well managed. Remember that once his levels reach the normal range, his body will only BEGIN to heal, so these symptoms may continue for some time afterward, though to a lesser degree all the time. Graves’ took a long time to come on, and it can take almost as long for the body to fully recover. In the meantime, with treatment, things should be a LITTLE better all the time. Find those improvements, and rejoice in them. And get yourself out of the house when you just can’t take it anymore.

[Ski]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070824

I had RAI in 2001, and no I have not gained a lot of weight. I’ve been overweight since I was in 3rd grade, but going through RAI did not add any appreciable amount to my weight. I don’t have a tough time managing my weight, I don’t have to starve, or exercise twelve times a day. I am just now beginning a new exercise program (not one of my favorite things, probably high on the list for my lifelong weight issues), and things are progressing as one would expect. As I do better with my intake and exercise, the weight is coming down, the muscles are becoming stronger, and my clothes all fit better. My motivation can be low sometimes, but that’s on ME, not my disease or my treatment choice.

I think one of the issues patients continue to have is that they do not understand thyroid hormone levels. They look to their doctor for all input on their disease, treatment and recovery, and the doctor does NOT care as much as we do about finding OUR normal point within the range of normal thyroid hormone levels. They see lab tests that read "normal" and they close the book. It is rather horrifying how many patients just take that, even after they feel badly for years and years afterward, then they choose to blame the initial treatment rather than their continuing care, because they don’t know any better, don’t do research, don’t learn anything about what their own body is doing. (By the way, those people are not here ~ everyone reading here is doing far more than those of whom I speak, and they all have a better chance of feeling well long-term.)

Remember that weight issues can be managed, we can always exercise a little more, eat a little less, when we are HEALTHY. Thyroid issues are secret killers, and they sabotage our weight control, so we must manage our thyroid levels very carefully in order to protect ourselves and minimize weight issues.

[Ski]

in reply to: My sister has now been diagnosed! #1069912

No kidding! Hashimoto’s is another chronic autoimmune condition (actually, the first that was actually recognized as an autoimmune disease, thank you Wikipedia) where the antibodies destroy thyroid cells through attacks on thyroid enzymes, and the patient becomes hypo. It’s tricky because the antibodies (like Graves’ antibodies) can go active and inactive with no set pattern, so it leads to periods of normal, followed by periods of hypothyroidism, back and forth, and it can be difficult to manage. The patient could take thyroid hormone replacement during periods of hypothyroidism ~ but how much? We all know that takes a while to dial in when circumstances are EASY (like, no thyroid), but when it’s a guessing game about how active the antibodies are and how hypo the patient is, that complicates matters almost impossibly.

I think I’ve painted the picture for you. ” title=”Very Happy” /> We see people here (obviously) more often that have both Graves’ and Hashimoto’s (lucky few), and for them it’s typically a choice between RAI or surgery, because the fluctuations are nearly as harmful to the body as a chronic imbalance on one side or the other, and ATDs can’t manage those two conditions at once.

Let us know if you find out what’s going on with your sister! Given her history of being thin and shaky, I’d say it’s still possible that it’s Graves’ she’s talking about, and she’s just come out the other side with a thyroid that’s functioning either at some percentage of normal or not at all. Some people do have Graves’ to a "lesser degree" than others, and she may not have felt the very worst of it when she was hyper.

[Ski]

in reply to: having a virus and GD? #1069902

Any immune system "spike" is capable of bringing up our Graves’ antibody activity as well ~ while your body is actively fighting something else, you may well find that some of your Graves’ systems escalate.

[Ski]

in reply to: Labs #1069876

Sorry, we aren’t medical professionals, so we can’t put forth any opinion or judgment on lab results. Bottom line though, if you’re unhappy with the way your doctor is treating you, by all means, go to another. Either you or your insurance company is paying the salary of the doctor you have chosen, and you do NOT have to continue paying that salary if you are unhappy with your care. Whatever that takes ~ your health, your well being, your peace of mind is WELL worth anything you need to do. Consider that a good doctor can make every minute of each day of your life far better, so the impact of a few hours’ research, or a long drive to the office, seems less when you put it into the larger perspective. Whatever choices you have, make some phone calls before you head off to a new doctor. Talk with the receptionist, talk with one of the nurses, get a feel for the doctor’s "way," if you know what I mean. Ask about the doctor’s willingness to talk over finer details with patients ~ this may lead to a crowded waiting room, but again, worth the wait if that’s the reason.

[Ski]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070822

There was a post not too long ago asking this very same question. Search for "RAI positive results" and it’ll probably pop up. Lots of people replied with positive results.

It’s STILL your decision! Whatever results other people have had, unfortunately you cannot always say that your results will mirror those. That advice goes for ANY of the GD treatments. Each of us is an individual, and with Graves’ it seems even more pronounced that people have wildly varying results from the very same treatments. It’s all about what YOU feel comfortable with, what YOU want.

[Ski]

in reply to: Just found out today I have graves disease #1070020

Typically things change rather slowly, but read up on the symptoms of thyroid storm, just in case. It’s rare, but you should know what to look for. Read up in the meantime!

[Ski]

in reply to: Taking PTU indefinitely #1069907

This is a tricky question ~ some doctors will not recommend longterm (indefinite) use of ATDs, because of the liver issues. There are actually two issues. The first comes up when the patient begins taking ATDs, and if it happens, the patient stops taking them. You are obviously not one who had immediate/dramatic changes in your liver enzymes from taking ATDs. The longterm issue is a little more complex. Our liver gets "filled up" with byproducts from all the meds we take over our lifetime, and so as we get older, we need to be even more careful about the meds we take, to avoid building up toxicity and taxing the liver. We also need to be aware that, as we age, it is more likely that MORE meds will be added to our daily regimen, so lessening the amount of meds we take is better than adding to it, if we have a choice.

The replacement hormone we take after we do either RAI or surgery is NOT processed through the liver and does not elevate toxicity, because it is chemically identical to the substance our thyroid would produce if it could, which does not tax the liver in "regular" people or in us.

There are LOTS of people who did not gain significant amounts of weight after RAI or surgery. Being well regulated prior to treatment will definitely help.

[Ski]

in reply to: My sister has now been diagnosed! #1069910

Oh my! I’m sure there are instances like this, but as far as I know, it’s pretty rare that each sibling would end up with the same condition. She benefits by having you as siblings though ~ it really does help to have somebody around who’s been through it.

When you say that she’s been diagnosed but she’s hypo, that raises some questions. It is true that untreated Graves’ will typically destroy the thyroid on its own ~ the thyroid cells get so overworked that they just die off ~ but that would mean the treatment for her would be as simple as taking thyroid hormone replacement so she would no longer be hypo. That’s relatively easy, compared to what you and her twin have been through! Did she suffer a period where she seemed anxious & shaky, as you did when hyper? It’s pretty odd to have gone through all the hyper without noticing, then be diagnosed after the thyroid’s gone, or mostly gone.

As I’m sure you know, Hashimoto’s is the autoimmune disease that creates hypothyroidism through a different set of antibodies, so if that’s what she’s dealing with, it’s a little more complicated.

Let us know how you’re ALL getting along, my goodness! When do you all get a REST? ” title=”Very Happy” />

[Ski]

in reply to: T3 & T4-anyone else on this? #1069915

This question sounds so familiar ~ you may want to do a search because there’s certainly more information here than I’ll be able to get into this message.

First and most importantly, just because your levels fall in "the normal range," that does not mean you’ve hit YOUR normal point. The range is really large, specifically because there are people all across the range who report themselves as "normal." If your doctor is willing to support you in the quest, get some help adjusting your dose by small measures, and see how you feel ~ for instance, I take half a dose on Sundays and it makes me JUST right. If I go back to taking the whole dose on Sundays, the "tic" over my eye returns and my tremors start, ever so slightly. It’s possible that you need JUST a little bit more than you’re taking, in order to feel right. It can take time to figure this out (you need six weeks between dose changes to have truly meaningful blood test results), but it is SO worth it.

Secondly, just because you’ve hit a normal blood level, this isn’t like a virus we "get over" and suddenly feel well. The hyperthyroidism causes a great deal of damage across your entire body, and that damage isn’t able to even begin healing until your levels have hit, and remained at, some normal level. In that respect, you are still recovering from hyperthyroidism, and you need to give yourself a LOT of slack. Small improvements are the norm. Big leaps into feeling GREAT are rare.

T3 is very volatile. It must be taken several times a day, each time on an empty stomach and also keeping the stomach empty for an hour afterward. Some people find a benefit from it, others end up toxic again, experiencing hyper symptoms. For the most part, those who benefit from it are those whose livers are compromised in some way, which inhibits the conversion of T4 (inactive hormone) to T3 (active hormone) in the body. It is typically recommended that you give plain T4 a while to work before adding T3, and even then only after determining that your T3 levels are chronically low even on relatively high doses of T4. Most of us can convert T4 to T3 as we need it.

Weight gain is a fairly common element of recovering from Graves’ Disease, for many reasons. Once your levels are normal, and stable, you should see a physical therapist to evaluate your strength and tolerance, then begin CAREFULLY regaining the strength in your muscles. Eventually you can return to the state of fitness you were used to, but the muscle wasting of hyperthyroidism does a real number on our bodies and we need time to recover.

I hope this helps!

[Ski]

in reply to: Just found out today I have graves disease #1070018

You should get a copy of your thyroid hormone test results ~ if those results are far out of range in the hyperthyroid areas (T4 very high, TSH very low), the most likely reason is Graves’. Transient thyroiditis CAN occur, but usually resolves after six weeks’ time. If your levels have been high for more than six weeks, again, the reason is probably Graves’. You can re-confirm the diagnosis with an uptake/scan of the thyroid, which will show a pattern of uptake across the entire gland (not normal), and will give a very high percentage of uptake, if it’s Graves’.

Many of us believe we are not having symptoms when we are hyperthyroid. The early symptoms are very subtle and may just seem as if we are unusually "energetic" and feeling great, because we can do just about everything on very little rest. Unfortunately, waiting for symptoms to arrive can mean we’ve had some real damage in our body. Being hyperthyroid is kind of like being a car, sitting in the driveway with a brick on the gas pedal. For a while, it’ll just rev really high. After it’s gone on for a long time, things start flying off the car and out of the engine. You don’t want to wait until your body is at that point. If what you’re looking at is hyperthyroidism, you need to treat it.

RAI is not the only treatment available to you. ATDs (anti-thyroid drugs) are effective for many people. Do your research on the disease and the treatment options (there are three ~ ATDs, RAI, or thyroid removal through surgery), and make your own decision. If your doctors are so inattentive that they can’t even tell you what’s going on with you, and they dismiss your questions and concerns about treatment, you should really go looking for a new doctor who will work with you. This can be a long road. You need a team member, not someone who thinks they’re the "boss of you."

[Ski]

in reply to: can change in birth control pills affect hyperthyroidism? #1069966

Since birth control pills are made of reproductive hormone, they can have an affect on your thyroid hormone levels. I do not know the precise details, but it can affect your levels (same as symptoms are "amped" during our monthly cycle, and how our levels can change during puberty, pregnancy and menopause). Whatever medication you are taking for hyperthyroidism (either ATDs, or replacement hormone after ablation), you should get your levels checked about a month after beginning birth control pills just to make sure your levels haven’t changed, and adjust your meds if necessary.

[Ski]

in reply to: Thyroid Hormone at Night? #1069957

You just have to take it on an empty stomach, that’s why most people opt for morning. Otherwise, you should have at least a couple of hours (preferably 3 or 4) since you’ve eaten, before you take the replacement hormone.

[Ski]

in reply to: Total Thyroidectomy Scheduled 2/5/09 #1074004

I’m not sure what kind of doctor is best for the thyroid surgery, but I do know that you need someone who performs these procedures very often, and with very low complication rates. That area of the body may seem "simple," but the structures are complex and the complications can be devastating. If a doctor won’t give you figures on the number of surgeries they’ve done in the past year and the complication rates (at least a ballpark figure), you need a different doctor. Your health is far too important.

[Ski]

in reply to: The Verge of Remission:) #1069988

It is possible to have antibodies without symptoms ~ what James is suggesting is that, if your antibody levels are low when you drop the meds, you have a better shot at maintaining a remission. So if you test at high levels of antibodies, you may want to just continue on a very very small dose of meds until the antibody levels come down, then stop the meds.

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