[DianneW]

in reply to: unexplained bruising – scared. Is it related to meds? #1070876

I just want to clarify that I have no idea what’s causing your brusing; I mentioned the platelets as one possibility. You need to call your doctor immediately and find out what’s wrong. I didn’t mean to suggest that I had the answer, because I don’t. Only your doctor can determine what’s wrong. Best wishes,

[DianneW]

in reply to: unexplained bruising – scared. Is it related to meds? #1070875

Hyperm,

It’s not uncommon for people with Graves’ Disease to have a low platelet count. A low platelet count is one of the frequent causes of easy bruising. This is something that showed up in me while I was being treated for Graves’.

I was sent to a hematologist for further testing, and she showed me a study indicating that patients with Graves’ Disease frequently have low platelet counts that normalize when thyroid levels are normalized. However, at that point my levels were already normal, so I didn’t see how that applied to me. She insisted my levels would eventually normalize, but they are still low all these years later. (Fortunately, they’re not dangerously low.) The condition is known as idiopathic thrombocytopenic purpura, or ITP for short. It’s often an autoimmune disease.

Anyway, if your doctor doesn’t think to test your platelets, you might mention this to him as a possibility. I hope there’s nothing too serious going on for you.

Best wishes,
Dianne W

[DianneW]

in reply to: update: 7 weeks after RAI, and ATM #1071318

Unfortunately, being patient is often part of getting well from this. At least you’re this much closer than you were before! Hang in there, and keep us updated with how you’re doing!

Best wishes,

[DianneW]

in reply to: Artificial tears and eye makeup #1071908

One of my eyes was always larger too. It’s common with this disease, so I didn’t think anything of it. When my surgeon went in there to do the decompression he discovered that my orbit had been fractured previously, which was the reason one eye was smaller than the other. He called it an "accidental decompression". I’d been in an accident and had fractured my nose, but didn’t realize the orbit was fractured too. (No wonder it hurt so much!!)

The same surgeon told me that one of his Graves’ patients had received a "free decompression" when her husband hit her in the face. The eye on that side went into perfect position, so he only had to decompress one eye. (Not the way I’d chose to have it done. . . .)

I agree with you. I feel better with a little mascara and eyeliner.

[DianneW]

in reply to: Artificial tears and eye makeup #1071906

Ruby, you are brave. I should temporarily change my picture to what was "natural" for me 11 years ago (with the weight gain, before the eye surgeries), LOL. Too bad we can’t have before and after photos here.

[DianneW]

in reply to: Feel lucky despite having Graves #1071953

Shirlee,

I know exactly what you’re talking about. The mental/emotional pain I experienced during the years my thyroid was out of whack was so severe that I couldn’t possibly explain it to anyone in my life. Only others who had been through it themselves could understand; thus the support on this BB. One other poster who was a cancer survivor said her GD was much worse than the cancer for that reason (the emotional factor).

I’m entirely free of all that now, 13 years after my RAI, but it was a gradual process. I thought I’d be all well once I had the RAI and started on replacement hormone, but it didn’t happen quite that soon. There were several years of fluctuating levels, and even once my levels stabilized it took time for me to heal, apparently. But each year I am better and better I think. At 57 when my memory should be failing, I seem to be regaining some of the impairment that I experienced when I was hyper and then became suddenly hypo. I no longer fly off the handle. I no longer isolate from others, and feel very much as if I can deal with whatever comes my way. This is exactly the opposite of how I felt when I was going through the worst of the disease process.

The last couple of years I’ve been doing crossword puzzles and Sudoku puzzles to exercise my brain, and I review my college textbooks and do a lot of reading to keep my brain active. (This is something I started after I read a medical abstract which suggested that excess T3 can destroy brain cells, which if true would explain my experience with memory loss while hyper.)

I hope you aren’t as far gone as I was, but I write this to encourage you that everything will probably improve for the better in time.

We’re glad you have joined us. I hope you’ll come to the conference in October in Charlotte (details on the NGDF web page).

Best wishes,

[DianneW]

in reply to: Gonna sound superficial…hairdye question??? #1071839

Rhonda,

The hair dyes most hair dressers use shouldn’t be a problem. They are applied to the entire head initially, but touch-ups are applied to the new growth only, so exposure is kept to a minimum. Millions of women use them without problems.

I’m not aware of anything that would help with your "moon face" from the steroids, other than going off of them. I suggest you tell your son about your face and the reasons for it so he won’t be shocked, and then trust him to be glad for your presence and for the health that you do have. Sometimes our grown children are more resilient and understanding than we given them credit for.

I’m thinking about when my own mother was ill with cancer, and she attended my children’s baptism. What she looked like didn’t enter the equation for me. That she made the effort when she was feeling as she was, and that she didn’t care about going in public wearing a wig in order to be there for us, meant everything to me.

[DianneW]

in reply to: You have Graves. Ok. I get it. #1071878

To both Lisa and RNFQueen,

I just want you to both be clear that the methimazole is not what was causing the hair loss, but the changes in thyroid levels.

RNFQueen, what Hyperm said she experienced (TS) was a thyroid storm, a life-threatening exacerbation of hyperthyroidism.

[DianneW]

in reply to: Help-Exercise, still tired, brain fog and loss of sex drive #1071854

Shapooky,

You said that your levels were tested and were fine. I presume then your hyperthyroidism has been treated. How were you treated, and how long have your levels been normal? Do you know what your last TSH reading was? Not every part of the TSH "normal range" is necessarily normal for you. There may still be some help for the symptoms you’re still experiencing.

[DianneW]

in reply to: Graves or age? #1071848

Madame X,

Most likely having a period at CD 18 means you didn’t ovulate, and at age 51 that probably means you’re nearing menopause (perimenopause). This is probably an issue for your Gynecologist, as mamabear suggested. While for most people with hyperthyroidism the cycles will straighten out when thyroid levels are normalized, this may not happen in your case. The mean age of menopause for women in the U.S. is 52.6, with menopause defined as being a year after the last cycle. So at 51 if you are still having regular cycles you are already having them longer than many women do.

[DianneW]

in reply to: Daughter Just Diagnosed #1071895

Becky,

It’s completely understandable that her symptoms would creep up and seem to be part of what was normal FOR HER. You had no way of knowing what was part of her changing into a young woman and what was abnormal. I went through the same thing with myself, not knowing what was an illness and what was part of becoming older–and of course your daughter would have no way of knowing either. The important thing is that it’s diagnosed now and being treated.

What questions does your daughter have? We’d be glad to help answer those the best that we can, and help you figure out which ones only her doctor should answer. It’s really good to make a list of questions before each appointment so that your questions don’t get lost in the short time available. It’s a good idea for both parents to be at the appointment as well, since in the anxiety of the appointment it’s easy to forget the answer or not hear the entire answer. One parent can make it the job to try to listen carefully to the answers. (Sometimes the other parent is busy paying attention to the worries of the child or other details.)

I think when you have more answers you will feel more comfortable about your daughter’s treatment plan and what the future holds.

Best wishes,

[DianneW]

in reply to: hair loss #1071941

I’ve always been the "long hair" type, and so was distressed during my hair loss times, which for me lasted for five years while I had thyroid fluctuations. My husband got really tired of taking apart the sink and bathtub pipes to unclog the drains, as well as replacing the vacuum cleaner belts that broke from the hairs. The bright side was that my hair actually appeared thicker because the new hairs constantly growing in (all different lengths), which had some natural curl, gave my hair some puff. It got very thin at the ends though, so I had to keep it shoulder length or shorter. Finally 13 years later I’m able to grow it long again.

The point is that I tried EVERYTHING in terms of diet and supplements to help me feel better and keep my hair, including biotin. Nothing worked. As the doctors say about this, I probably had very expensive urine.

[DianneW]

in reply to: I would like to donate money as well attend 2009-OCT Conf #1071870

Thanks you SO MUCH!! We need people like you and hope you’ll consider talking to us at the conference about any time you have to share as well. I look forward to meeting you in October in Charlotte.

[DianneW]

in reply to: You have Graves. Ok. I get it. #1071874

Dear Lisa,

I hope you haven’t stopped taking your Methimazole. That is what will help you the most. Besides blocking the excess thyroid hormone, it functions to a slight degree as an immune modulator and can help reduce the antibodies that cause the disease, which can in many cases help lead to remission (either temporary or permanent). Just normalizing your thyroid levels can also help reduce the antibody levels, but there are no known natural ways to do this.

Hair loss is generally a symptom indicating either that you are ill or that you have had a rapid change in thyroid levels. Any time my levels have changed even a tiny bit I’ve had the kind of hair loss you describe. Some people are more sensitive than others to changes in levels when it comes to hair loss, but most people do experience some degree of hair loss when they have a rapid, major change in levels as you have just seen in yourself. In my case I didn’t have hair loss either hyper or hypo if my levels were relatively stable; it was the changes that caused it, but you may be different.

In any case,I’m surprised your doctor wasn’t aware that thyroid level changes commonly cause hair loss. Perhaps vitamin D deficiency can make it worse.

I also had the kind of severe muscle cramps you’re describing, both when I was hyper and when I was hypo. Taking calcium or other supplements didn’t help me significantly. I didn’t take a beta blocker Normalizing thyroid levels and keeping them normal did help.

So in your case, it may be difficult to sort out the cause. It may not be your beta blocker (blood pressure med) at all causing your cramps, or could be a combination.

I agree that you need a doctor who is empathetic and will listen to all your symptoms and treat you as an authentic human being. If a doctor doesn’t take all you say seriously, s/he will be useless during the most crucial times. I know; I’ve experienced this. Life’s too short for the aggravation.

Taking the beta blocker is important while you’re hyperthyroid because it protects your heart from the effects of excess thyroid hormone and might even save your life. You must also take the methimzole to reduce your thyroid levels, since there are NO natural cures known. Many people have taken it in conjunction with natural cures and improved lifestyle choices with great success, however. We do recommend that for people who wish to take that route, as long as you have your doctor’s permission for all the natural treatments, keeping in mind that not everything "natural" is good for us. (An example: Health food stores often recommend kelp as a natural treatment for thyroid disorders, but the high iodine content can make hyperthyroidism much worse. Kelp is only good for thyroid disorders when they are caused by iodine deficiency.)

You said that not a lot is known about this disease, but that’s really not true. A lot IS known; it’s just that researchers don’t quite yet know how to stop the attack of the immune system against the thyroid and eyes, though they are getting closer than ever to being able to do even these things. Until then, we are fortunate to have three treatment choices that all work to restore us to good health, even though all three of them have down sides that we don’t always enjoy.

I think perhaps you haven’t completely understood what’s going on and what is causing your problems. I hope that coming here and talking to others who are experiencing the same things will help you discover what’s the disease and what might be the meds. Maybe this will help you make more educated decisions? I hope so.

We have some others here who share your desire to treat with more natural methods and who I hope will respond to this (James)? Keep checking back.

[DianneW]

in reply to: Weight Gain #1071919

I know you want people to give THEIR experiences and that’s great–and I’ve already told you about the studies you can find on PubMed on the subject, but I forgot to mention that some of the studies concluded that people who were overweight before Graves’ were more likely to gain weight following treatment than people who were of normal weight, if that helps.

[Author]

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