[Bobbi]

in reply to: HAIR LOSS #1075565

Hi, Orlando12:

I don’t know if there is any set time for normalization of the hair and nails. A good part of our recovery, in all ways, depends upon how long our bodies suffered from excess levels of thyroid hormone. Some folks are caught early, even before they start feeling weak and lousy. Others are hyperthyroid until they are weak and emaciated. So, recovery times do vary.

[Bobbi]

in reply to: hyper again #1169395

One possibility: There can be thyroid tissue left after RAI. It may not be enough to send us hyperthyroid all by itself, but if there are fluctuations in antibody levels, it can, when added to a dose of replacement hormone, make us temporarily hyper again, requiring a cutback in our replacement hormone dose. Sometimes this cutback is temporary, and you might find you have to go back to the higher dose eventually.

Second possibility: if you are on the generic, and if your pharmacy recently changed generic manufacturers for the replacement hormone, there could be a difference in how it is absorbed into your body. This may not be a huge possibility, but I would watch carefully when you get your replacement pills. I have had pharmacies change other medications’ generic manufacturers from time to time. It’s not supposed to be a problem. But with something as strong as levothyroxin, small differences can be an issue.

[Bobbi]

in reply to: Post partum graves? #1169454

Let’s ignore, for the moment, the "Graves" diagnosis. What your doctor is talking about is the probably cause of a condition that you absolutely have. That condition is hyperthyroidism. It is diagnosed by blood tests, which are absolutely definitive. If you have too much thyroid hormone, and too little TSH it is hyperthyroidism. It doesn’t matter what is causing your hyperthyroidism. It MUST BE TREATED. Why? Because too much thyroid hormone munches muscle. We LOSE muscle over time. The heart is a muscle. It gets weakened. In addition, too much thyroid hormone can cause arrythmias (heart irregularities) which can be deadly. And, the whole while you are hyperthyroid you are losing bone. So not treating it is not the wisest thing you can do for yourself and for your baby. (Your baby needs a healthy mom.) Hyperthyroidism allowed to persist over time is extremely debilitating.

[Bobbi]

in reply to: New to Graves Disease and looking for some answers #1169458

While we are hyperthyroid, we lose muscle mass. This "looks" like weight loss because muscle weighs more than other body tissues, but it is really bad weight loss because muscle burns more calories — even at rest — than other tissues do, so losing muscle lowers our metabolism and means we have to eat less to maintain whatever weight we are at. When our thyroid levels get normalized again, some (at least) of the muscle tissue comes back, little by little. It looks like weight gain. It isn’t, however, particularly strong muscle until we exercise it. And, no, you probably cannot use the same weights for exercise that you could use before, because the amount of muscle may be less, or it is just weaker than it had been, and you need to downsize the weights to keep from straining things.

When folks talk about lingering weight issues, it may be because we lose some muscle permanently. I don’t know about that part of things. My own weight issues normalized after proper treatment of the thyroid malfunction, and after I had spent time rebuilding my muscle strength.

[Bobbi]

in reply to: Have Graves disease not sure what to do… #1169490

It is, indeed, a personal decision, but it is my understanding that when someone has the antibodies for both Graves AND Hashimotos, and as a result, is subject to cycling between hyper and hypo levels of thyroid hormone, that serious consideration be given to removing the thyroid. Your doctor can give you the best explanations for whatever treatment option is offered, and you should ask lots of questions.

[Bobbi]

in reply to: Do diuretics help? Am I getting better now? Wil pain go away #1169494

We’re not doctor’s here, and it seems to me that whether or not diuretics should be considered would depend entirely on what is causing the puffiness in your eye lids. And, that needs to be decided by a doctor. If the problem is thyroid eye disease, then the puffiness isn’t really swelling: it is the fat pads at the front of the eyes being pushed forward a bit by eyes that are being pushed a bit forward by the swelling of eye muscles. If its an allergic reaction to something, diuretics wouldn’t help either. So the best thing you can do is check with your doctor.

[Bobbi]

in reply to: Insomia relief? #1061198

Hi, Mike:

Heat intolerance is sometimes a sign that our thyroid levels are too high. Ditto panic attacks. If you haven’t had your levels checked recently, you might want to call your doctor and arrange for a blood test.

[Bobbi]

in reply to: Will eye problems (diplopia) continue to escalate? #1169505

Hi, and welcome to our forum.

Kudos to you for quitting smoking. It was one of the hardest things I ever had to do. And, as far as I know, the jury is out on whether or not quitting "helps" with the eye disease. The problem with scientific research on humans is that we are all so complex, and variable, that it is truly hard to provide the types of controls that give concrete evidence. What was known when I went through the two diseases was that people who ever had smoked had worse eye problems than those who never smoked. Now, research suggests that quitting will perhaps ameliorate the course of the disease. I don’t know if that is well-documented or not, though. But keep at it. It is definitely worth while to give up cigarettes. Ten years after quitting, I am feeling strong and healthy, and given my (rather advanced) age, that might not have been the case if I had continued to smoke.

What happens with the eye disease is that the muscles of the eyes become enlarged and stiff. There are three sets of muscles for controlling the movement of each eye, and they have to work well together in order to provide single vision. Unfortunately, though, with TED, the muscles are not uniformly affected: i.e. there is asymmetry with regards to the enlargment and stiffening. And this often leads to the doubling of vision. The muscles cannot work well together to focus on a single point. The eye disease itself progresses through a hot phase, in which symptoms worsen. Then, there is a leveling off, followed by a lessening of symptoms until finally the process stalls. All of this can take anywhere from 18 months to 3 years, on average. Whether or not you go back to your previous vision depends upon how much permanent damage has been done to the eye muscles. But, that said, I was told I undoubtedly had permanent damage, and when everything subsided I was left with only occasional diplopia. Most of the time, I see fine. And the protrusion mostly went away, as well. So, don’t panic. Also, try to understand that unless our optic nerve is being jeapardized by the swollen eye muscles, our doctors prefer not to intervene. The intervention modes available to them have somewhat draconian health consequences, and they prefer the "wait and see" approach.

Do use those artificial tears. They protect your corneas from another problem we have with thyroid eye issues, which is seriously dry eyes. You may not think your eyes are "dry" because you have tear action frequently. But the eyes ARE drier than they used to be.

And, if things are worse in the mornings, you might try putting books, bricks, or blocks under the head of your bed, in order to raise it up a bit. If you sleep on a slanted bed, swelling is minimized. Sometimes swelling is more pronounced in the mornings than later in the day, when yhou have spent time on your feet.

I hope some of this info helps.

[Bobbi]

in reply to: hello im new here #1062141

Unless someone has specific additional medical issues (damaged liver, wonky heart, etc.) it is irrational to be afraid/terrified of any of our treatment options. All of our treatment options (with the above caveat firmly in mind) are immensely safer than remaining hyperthyroid.

So, the issue has to come down to which treatment option appears to have the best chance of returning you to normal, CONTROLLED levels of thyroid hormone, without adding additional risk to your other organs. If you have compromised liver function, ATDs might be indicated as a last choice, not a first choice. If you have significant eye disease, you might be better off with ATDs or surgery. If your heart is weak….well, you probably get my point. Your DOCTOR needs to tell you about additional risks based on your overall medical condition. Just don’t eliminate any of the options in your mind because you are nervous about it.

Keep in mind, too, that autoimmune diseases are permanent — they do not go away never to return. They might go away temporarily (called "remission"), but if that happens you must stay alert to the inevitable return of the health problems.

And, comparing a small, measured dose of RAI to the uncontrolled (and complex) radiations emissions from a broken nuclear reactor is NOT HELPFUL. It’s like comparing currents with grapefruits and meatballs.

[Bobbi]

in reply to: another question about weight #1169529

Hi, Jessica:

If it were me, I would schedule a visit with my GP (since the endo seems to be uninterested). Unexplained weight loss could indeed be related to aberrant thyroid levels, but it could also be due to some other health issue.

[Bobbi]

in reply to: Why avoid radiation treatment/thyroid removal? #1061084

There are good medical reasons for avoiding ANY of the treatment options available to us. Irrationally discounting any one of them can do us harm. Sure, we all have preferences. And, in a perfect world, we would be able to choose whichever one we feel most comfortable with. But it’s not a perfect world. Some folks are allergic to ATDs. Some folks’ livers cannot tolerate the extra load that ATDs put on them. Some folks cannot control their hyperthyroidism sufficiently on ATDs, and they go into and out of hyper and hypo all the time. They should look at the other choices. Some folks have heart disease on top of things, and that might dictate doing ATDs instead of RAI or surgery. Your doctor is the person to listen to about such things. If you have a choice, consider yourself lucky. If the doctor says you don’t really have a reasonable choice, listen to him/her and really carefully try to understand the reasons: ignoring the advice might be the worst possible thing you can do. And if you don’t like what you hear, go to another equally well-qualified doctor for a second opinion.

The bottom line is that we have three good possible options to make us healthy again. Some of us prefer one treatment over another. But just because I chose option "A", it doesn’t mean everyone else should or that anyone else can safely do it for the same reasons.

And, BTW, msmanatee, oculoplastic surgeons are not "just" cosmetic surgeons. I think you may be misreading the "label."

[Bobbi]

in reply to: Post RAI and Hypo #1061074

The hormone replacement HAS kicked in, Renee. Whether or not it is sufficient is another issue. But it starts to work immediately. Any of the hormone that isn’t utilized immediately is stored. It has a half-life of about a week, so there tends to be a build-up over time, which accomodates varying needs for the hormone.

As to why you need to wait. The best of the hormone tests — i.e. the one that can detect the smallest levels of hormone — is for TSH, which comes from the pituitary gland. This is the "thermostat," if you will for the thyroid. If the pituitary detects too low a level of thyroid hormone, it raises the amount , to allow for that "average" to catch up. So, sometimes, we have to be patient, feeling less than well, to wait the required time. But it is important to wait. If you go in too frequently, you can go onto a hormonal roller coaster. If the amount of TSH doesn’t accurately reflect your real thyroid levels, you would be given the wrong amount of replacement hormone, and perhaps go hyper again. And then need to take less, etc. etc. Waiting minimizes the chance that your blood work doesn’t accurate reflect what is going on.

Also. Getting onto replacement hormone does NOT mean that you will instantly feel well again, even if the initial dose is absolutely correct. Why? Because over the months you were hyperthyroid, there was damage to body systems that weren’t working properly. You lost muscle, for example, which doesn’t return overnight, and which must be strengthened once it returns. You need time AT normal levels of hormone, in order for your body to heal. You didn’t get sick overnight, and you won’t get well overnight, either. But do plan on getting well again. The majority of time, we do get well again.

[Bobbi]

in reply to: Recent recurrence after a year on meds #1061092

Hi, Marza and welcome to our Board.

The sad reality for us all to acknowledge, is that with an autoimmune disease the condition is permanent. There can be periods of remission (defined here, at least, as being able to go off meds for a year or more) because antibody levels can rise and fall for no well-understood reason. And, medical knowledge to date does not include being able to target specific antibodies. Remissions are, by definition, temporary.

So, what that means is that we all have to expect to be on medication to control our thyroid levels for the rest of our lives.

That’s the rotten news. The good news side of the issue though — and from the autoimmune standpoint, it is really good news — is that with Graves we do have treatment options that work to give us our health back. There aren’t a whole lot of other autoimmune issues as debilitating as Graves that offer their sufferers the possibility of a healthy future.

What is really important for you, though, is to make sure that your thyroid levels STAY in the normal zone. Even fluctuating in and out of hyper is horrible for your body. So, making sure that your levels are being checked regularly, adjusting the medication you are taking (whatever that might be) is something you will have to pay attention to from here on out.

[Bobbi]

in reply to: Recent Surgery and Not Feeling Like Myself #1061176

AprilB: You’ve just had major surgery. Your body has been through a wringer. Not feeling quite normal is absolutely normal. And, until you find the proper dose of replacement hormone, for you, there can be ups and downs.

JazzMimi:
If you decide to try desiccated thyroid, be sure that you are buying it from a reputable pharmaceutical company and not a supplement maker. Why? Because Congress does not regulate supplement makers. Supplements are considered food products and the FDA has more limited "brakes" to put on food than it does on drugs. Tests of supplements have found wide variability in their contents, even within the batches from the same manufacturer. When it comes to replacement hormone we need absolute consistency, day to day, in the dose we take. This is important when we are taking only the T4 products. It is even MORE important if you are taking a product that contains T3. T3 in overdosing situations can damage your heart.

[Bobbi]

in reply to: sore throat #1061105

We’re not doctors here, so take any comments with a grain of salt. The sore throat after RAI that is mentioned occurs right away — within a week or two. If you have already gone on replacement hormone, it doesn’t sound like you have much thyroid to be causing soreness.

The best thing, since it is lingering, would be to see your GP, who will be able to determine what is probably going on.

[Author]

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