[DianneW]

in reply to: If it don’t make dollars….. #1072802

If you do have rheumatoid arthritis, treatment will be more complicated than just calling in some kind of prescription, and you will have to actually see a doctor. I would think that since you’ve paid the money to see the doctor and can’t afford to go back, that doctor should at least give you your test results and diagnosis.

Let that doctor know what your situation is, and ask for your test results and diagnosis. Ask if they have any suggestions for you since you have run out of options for resources.

I’m sorry you are in this situation.

[DianneW]

in reply to: GD but instead of wt loss – have wt gain #1072904

Speaking of buying new pants, here is my theory: I’ve found that I will usually be as large as my largest pair of pants, so I refuse to buy a larger size. Instead, I do everything possible to fit in the size I now have. That way, it’s impossible to gain weight. (I’m one of those who gained weight while hyper, naturally!)

[DianneW]

in reply to: after RAI, going off meds, healing myself #1072877

Like another post said, thyroid antibodies can be controlled by exploiting the psychoneuroendocrine axis, which I have done. So I have no doubt that my TSI are low.

Controlled? How nice that would be!! Certainly there’s evidence that in some cases influence can be exerted, but "control" is a very strong word. I think these distinctions are important.

All the best to you.

[DianneW]

in reply to: Questions from a dad #1072824

I’m not sure I understand either, if it’s true that your daughter’s thyroid hormone levels are all normal, so I think the first question you should ask your daughter’s endocrinologist is whether her thyroid hormone levels are indeed normal. Graves’ Disease generally is diagnosed partly from blood tests that reveal an excess of thyroid hormones T4 and T3, with a corresponding low reading of the pituitary hormone TSH (thyroid stimulating hormone). The TSH has an inverse relationship to the amount of circulating thyroid hormone. When the patient has too little, the TSH rises in order to stimulate the thyroid gland to produce more thyroid hormone. When there is too much, the hypothalamus senses this and orders the pituitary to shut down its production of TSH so that the thyroid won’t produce as much thyroid hormone.

In Graves’ Disease the immune system produces antibodies that act like TSH and cause the thyroid to produce too much hormone, bypassing the normal hypothalamus-pituitary-thyroid axis, so the TSH production shuts down, becomming extremely low. At diagnosis most Graves’ Disease patients have a TSH that is nearly undetectable, with Free T3 and Free T4 readings that are significantly above the normal range. Often the thyroid gland is enlarged (called a goiter).

If the thyroid hormones are only slightly elevated, the patient might not have too many symptoms. Early symptoms might include an elevated heart rate (especially with exercise), increased appetite, excitability, trouble sleeping, irritability, warm moist skin, weight loss, etc.

Sometimes Graves’ Disease (with normal thyroid levels) on the basis of Thyroid Eye Disease. Could this be the case for your daughter?

The bottom line is that the reasons for your daughter’s diagnosis will have to be explained by a doctor who has all of her test results and understands the rationale behind the diagnosis. From the information you’ve given it’s impossible to say. I know it’s difficult to wait until you can get in to see the endocrinologist, but I’d advise you not to worry too much yet. If she does have Graves’ Disease it is quite treatable, and to further address what might be your fears as a parent, that diagnosis would not affect her ability to have children or significantly affect her lifespan once successfully treated.

I’m not sure how much information you already know about Graves’ Disease or I would be happy to give you more information. There are a number of basic books on autoimmune thyroid disease that you can probably find at your local library; among them, "Your Thyroid, a Home Reference", "A Thyroid Sourcebook", and more specifically about GD, "Graves’ Disease: In Our Own Words" taken from this Bulletin Board.

While you’re waiting for your daughter’s appointment with the endocrinologist I suggest you request a copy of her lab tests, specifically those containing her thyroid levels (and make it a habit to do this whenever her blood is taken). This way you will always know more than just that her levels are "normal" or "not normal". Of course the doctor is always the best source of information regarding the test results, but doctors were not all created equally, and sometimes you’ll want more than one opinion, especially as you begin to learn which doctors you have more faith in.

I hope this is of some help to you.

Best wishes,

[DianneW]

in reply to: so many opinions, but really how many options? #1072855

hwalter,

When hyper I also had the problem of retaining fluid rapidly so that my weight could fluctuate, but by even a little more than you are saying. For me it was as much as 10 pounds within a few days’ time. That simply didn’t make sense, but that stopped occurring to that degree when my levels were stabilized. I still have no idea what caused it (my endo was no help).

I’m sorry to hear you feel worse taking the PTU. It usually takes from 4-6 weeks of faithfully taking ATDs for your levels to normalize, though you may begin to feel slightly better even before that. If your doctor keeps a close watch on your levels so you don’t become hypOthyroid then you’ll probably be glad you stuck with your meds. Don’t be afraid to communicate how you’re doing, but it’s basically up to you to comply with treatment. If you hope to have a remission, both the meds themselves and bringing your levels down play a role in bringing that about.

For anyone serious about not treating their disease, this board has nothing to offer. We don’t consider that an option.

[DianneW]

in reply to: Update: Uptake Test Results and first Endo visit #1072831

Yes, they can still do the RAI when you’ve been on methimazole.

You should be aware that RAI is not usually a quick fix. Depending on the dose you’re given, it can take from six weeks to 3 months (or possibly longer) to bring down your hyperthyroidism. If you then become hypothyroid, your levels may continue to drop for at least another 6-12 months, so you could have thyroid levels that continually change. If this happens you may not feel very well yet until your levels do stabilize. Some people stabilize sooner than others do. It’s impossible to predict how any patient will respond to a given dose of RAI or how soon the thyroid levels will stabilize. If it’s a short process, the patient will probably be happy. If not, there may be regrets for a time.

You can choose to have the RAI or to find out if your doctor can help you determine why you aren’t feeling better while on methimazole or if a dose adjustment would help you more rapidly than changing treatment choices at this point.

I hope you feel better soon, either way.

[DianneW]

in reply to: Anyone that tried natural methods/diet? #1073670

"QueenMe":e5mjks9d wrote:

not trying to be smart, but can you point me in the direction of some of this research? On pubmed I see a lot of research into genetics, reviews about the carcinogenic risk of RAI in stomach, kidney, and breast,(which makes me say, well DUH!), but, for example only one paper "Extracts and auto-oxidized constituents of certain plants inhibit the receptor-binding and the biological activity of Graves’ immunoglobulins." actually targeting the autoantibody as opposed to the thyroid, which is not the root cause of the disease.

Lemon balm was found to target the autoantibody specifically. This has been known (in the journal Endocrinology), for 25 years. Why hasn’t this been followed up on? Why is the medical establishment promoting a drug known NOT to affect the root cause and TO increase cancer risk over an herb that acts against the autoantibody itself? Not to be cynical, but it seems pretty well in line with the history of western medicine.[/quote:e5mjks9d]

Western medicine has used the effective ingredients from herbal medicines countless times, so I think if lemon balm had been truly useful in treating Graves’ Disease 25 years ago it would still be in use today. (Have you even had access to this entire study before promoting the results as something that shouldn’t be ignored? Are you qualified to make that judgment?)

As for the reviews about the carcinogenic risk of RAI, if you’ve thoroughly read the articles and have the training to understand them, you’d realize that the conclusions have all been that while some studies have shown a very tiny increased risk in cancers in some of those areas, other studies have not shown those risks, and the [u:e5mjks9d]overall[/u:e5mjks9d] cancer incidence in RAI patients is (surprisingly) reduced. Furthermore, comparing RAI patients to Graves’ patients who chose other treatment methods, there are increased cancer rates in the non-RAI treatment groups, which raises other questions, such as: does something about hyperthyroidism increase cancer risk in these areas?

My point is that when reading medical studies a person has to be very careful about drawing conclusions. That should be left to the people doing the research and their peers, who know all the issues involved. Researchers haven’t finished answering these questions, but the bottom line is that RAI is a very safe treatment with no significant increase in cancer risk.

[DianneW]

in reply to: Eye plugs????? #1073098

Another vote for Punctal Plugs. I started out with the plugs and after a few years when it became clear that for me this would be a permanent state, I had my puncta (plural, one is a "punctum") cautarized. Eventually I had the uppers done too. Having the uppers plugged or cauterized would cause most people to have tears running down their faces, so should definitely be done with the dissolving kind first.

A humidifier is also really good for those of us with extremely dry eyes, especially if we live in dry climates too. They also help in the winter when air is heated and tends to be dryer. I always have more dry eye problems in the winter.

[DianneW]

in reply to: Just Curious – Policy on Posting Links #1072842

The policy in the past has always been that links may be posted with permission only, since the content of some websites may contain information our Board of Directors doesn’t find credible. The intent is to maintain a high quality of information. Past rules have also disallowed the direct quoting of medical studies without the author’s permission, since that is copyright infringement.

My understanding is that updates in board rules are in the works, and that all policies are being reviewed. The good people who work so hard to make this board happen will make every possible improvement to keep this board relevant and credible, while keeping restrictions to a minimum.

I’m sorry that currently no rules are posted for people to refer to. Please be patient as we get all the updates done.

I don’t know if this clarifies anything, but it’s the best I can tell you right now.

[DianneW]

in reply to: Treatments for Eyes #1073504

This is in reply to 6819: When the doctor treats you with an antithyroid drug and also a thyroid replacement hormone to keep you from becoming hypothyroid, this treatment is sometimes referred to as "block and replace" therapy. It can be useful for patients who are difficult to stabilize. As for the well-being of your eyes, in theory they should do better once your thyroid levels are normal, though there is no guarantee of this. Being hypothyroid is the worst for the eyes. Still, keep in mind that the eye and thyroid aspects of this disease, though related, are separate conditions and the eye disease (TED) will do what it’s going to do regardless. It’s rare, but still possible, for someone who has had the thyroid disease treated and stabilized to find TED rare its ugly head out of the blue 20 years down the road.

To post a new topic go to the page with the list of post topics. Right above the entire list, on the upper left-hand corner below NGDF.org is a button in red that says, "NEW TOPIC". That’s all you do.

erobinson, you asked about morning sensitivity. Have you tried night-time ointments? I’m talking about the kind made with a combination of petroleum jelly and mineral oil. The kind that works for me best is Refresh P.M. Put it in the very last thing, as it’s difficult to see clearly once it’s in. Use a 1/4 inch strip inside each lower lid. It made a dramatic difference for me. I hope it helps you.

[DianneW]

in reply to: Treatments for Eyes #1073503

This is for Liz: The surgery I’m talking about to get rid of the fatty swelling around my eyes was a blepheroplasty, and was done by a ophthalmic plastic surgeon. He did it in conjunction with lid retraction surgery (to reposition my eyelids). The insurance didn’t pay for the blepheroplasty even though the fat deposits were caused by Graves’ Disease, considering this a cosmetic surgery.

[DianneW]

in reply to: Opthamologist in Dal/FW #1072851

Here is a link to the Membership Directory of the American Society of Ophthalmic Plastic and Reconstructive Surgery. Fill in the blanks for the city and state you are interested in and hit the search button:

http://www.asoprs.org/custom/directory/ … howTitle=1

These doctors are ophthalmologists who treat Graves’ Disease patients, as well as doing surgery.

I hope this helps!

[DianneW]

in reply to: Update: Uptake Test Results and first Endo visit #1072829

What your endo recommended is not unusual advice for a patient of any age. It seems to be common for endocrinologists in the U.S. not to be optimistic about the chances of remission on antithyroid drugs (ATDs), which statistically run around 25-30% long-term. They also consider the fact that regardless of treatment method, many patients will eventually become hypothyroid.

We recommend that patients having a permanent treatment (surgery or RAI) are certain they feel like they’ve had time to become fully informed about all three treatment options and feel 100% confident the choice won’t be regretted. If you read this board you’ll see that a number of patients regret having chosen RAI too soon. I’m one of those who had RAI without having a chance to talk to others first, and now wish I’d tried ATDs. Like you, I had mild hyperthyroidism.

I believe statistics show that patients with mild hyperthyroidism are more likely to have a sustained remission, not that this should be a determining factor for anyone, since people are individuals, not numbers.

What surprises me about your doctor’s advice is his saying that ATD treatment would make you hypothyroid. The goal should be to make you euthyroid (normal thyroid levels). While occasionally in the course of ATD treatment the patient does become slightly hypothyroid due to over-treatment, a vigilant doctor will correct this as soon as possible. If you do change your mind and decide to try this, have a good discussion with him on this subject and if you’re not comfortable, I hope you’ll get a second opinion. It’s important for the eyes not to have uncorrected hypothyroidism.

It’s still not a problem to choose RAI if you try ATD treatment and for any reason decide you’d prefer to take the RAI after all.

RAI can worsen the eye disease in about 15% of patients, usually temporarily. The immune system reacts to the damaged thyroid cells and the antibodies associated with Graves’ Disease and TED raise temporarily. Presumably this is the reason. Taking a corticosteroid drug such as Prednisone for a period of time determined by your doctor will protect against all worsening of eye disease, but since it can have serious side effects, your doctor may decide it’s not worth the risk.

If you’re not completely sure the RAI is what you want to do, I suggest you postpone it and try ATD treatment. You’re welcome to hang out here with us and learn more from real people who have tried all three choices. All your options will still be open. Most people are eventually happy with their treatment choice when it’s one they made fully informed. I’m sure you will be too.

Best wishes,

[DianneW]

in reply to: Grave’s onset post menopause #1072862

Hi lupinelady,

Your approach sounds wonderful. I’m only concerned about what you say are the atypical cells in your nodule. I’m sure you’ve discussed in depth the possibilities and risks if you choose not to remove the nodule. Have you discussed creative alternatives that might suit you better?

[DianneW]

in reply to: Grave’s onset post menopause #1072861

It’s not unusual to have an onset of Graves’ at times of hormonal change, such as after the birth of a baby, or at puberty or menopause, though it’s true that the disease develops more frequently in women in their 20’s-40’s. It’s not known why this is. Still, the disease can begin for the first time at any age. The first six months to a year, while hormone adjustments are occurring rather frequently, can be difficult for patients, and in my experience it’s the changes in levels that causes problems. Once you are on a stable dose of replacement hormone for six months to a year and longer, you’ll have a good chance to hear. Hair loss for me was always related to dose changes. It could be that hair loss in your case is a double whammy with loss of estrogen and the thyroid hormone changes. When your thyroid hormones stabilize you’ll have only one issue to deal with.

For me, taking biodentical female hormones (those that are put in a creme at a compounding pharmacy, and which are chemically identical to a woman’s own hormones) helped my hair loss and other issues, but that’s a completely different subject.

Ask your doctor to keep you on the same brand of thyroid replacement hormone. If you’re on a generic then you can’t be sure you’re on a pill made by the same company from one month to another, and it’s been shown that pills from different companies are not bio-equivalent. In other words, a 100 mcg pill from one company doesn’t produce the same TSH as a 100 mcg pill from another company. If you take the same brand name you are fairly well assured of bio-equivalence. If your doctor changes the brand of replacement hormone you’re on then you need to have another TSH test.

The current thinking in the medical world is that patients don’t need a T3 supplement if they’re on an adequate dose of thyroid replacement. I suggest that this early in your recovery especially, that probably is not going to be of help to you anyway. You may still have some thyroid function and be producing some T3 of your own. More likely you don’t feel well because your body has been through some major changes and you haven’t had time to recover. My first year following RAI was really awful, but I assure you I eventually got well. Eventually I did need to go on supplemental T3 and it helped me, but in the early days my problems were caused from fluctuations of levels and a failure of my doctor to prescribe a high enough dose of T4, not lack of T3. When your levels have been stabilized for a year or so, if you still don’t feel well, ask your endo to check your Free T3 levels. If they’re not in the normal range (mine weren’t), and your Free T4 can’t be raised, then he might be convinced to try supplementing with T3 on a trial basis to see if you feel better.

I don’t know if the age at diagnosis affects the recovery time, but since we take longer to rebound from everything as we get older, that idea almost makes sense. Ask your doctor what his experience is with older patients and let us know what he says.

I went on after my recovery to become quite active again, learning rock climbing, kayaking, and even (the year I turned 50) riding my bicycle over a major mountain pass. My diagnosis had been delayed for several years (in my early 40’s) because I’d passed off all my symptoms (fatigue, joint pain, etc.) to aging, and going to doctors wasn’t something I often did. So I want to encourage you that you will be well again, in spite of how you’re feeling now.

[Author]

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