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I was diagnosed with Graves while in college and didn’t seek treatment until August of last year. I’m 26. I had severe hyperthyroidism and the doctor I saw who specialized in internal medicine, suggested I take radioiodine treatment. He didn’t put me on anti-thyroid medication because in his opinion he felt it will only control the disease for a short period of time. He did put me on a high blood pressure medicine for about a month, Metoprolol designed to control my heart rate, and block the excessive thyroid hormone going into my heart.
Since treatment, the following is my laundry list of symptoms.
After treatment I began seeing an endocrinologist, which I have stopped seeing because I felt he treated me like a lab experiment and showed no sympathy towards me when I would describe my symptoms. Plus, he’s one of those docs who advocates prescribing you a cocktail of drugs instead of advising to seek natural remedies like food to control symptoms. Doctors like these should really not be fit to treat people with Graves or be in the medical profession period. Being from a Hispanic background we strongly believe in natural cures to help control symptoms for any disease. When I suggested to the doctor if there was anything that I could do as far as my diet, the statement he made almost made cringe. He said, "Oh no, let’s not think along those lines."
In early November of ’08, I developed severe muscle cramps that would keep me up at night and for a whole week would come at every 30 minute intervals and would completely immobilize me because of the excruciating pain. It began in my legs and then traveled to my arms and my chest and later my butt which could have sent me to the emergency room if I chose that route. Since I had recently lost my job, I was without health insurance for about a month and I really had no choice but to deal with it. I have since then married and my husband put me under his insurance, which thanks to him, I’m now seeing a better endocrinologist.
In October, since I was still showing symptoms of being hyperthyroid, the endo prescribed Methimazole and suggested I keep taking Metoprolol. After doing some online research there was a study done in Japan that showed that Metoprolol caused calcium deficiency and caused muscle cramps. After reading that, I immediately stopped taking Metoprolol and decided to take a calcium supplement daily, at one point I was taking 2400 mg daily for about 2-3 weeks or so. I notified the doctor about my choice and he suggested I keep taking the Methimazole. I listened to him for about a week, and since the cramps were still there I decided to stop taking that altogether. After 2 or 3 days later I noticed a visible improvement. My cramps were almost disappearing miraculously. They would maybe come once a day or every two days and the propensity/intensity of them were gradually fading with each week.
By February, my cramps had already disappeared only to find that a new symptom was appearing. My hair was now falling in clumps every time I took a shower, the drain would clog, it would be all over my clothes, on the pillow, on the floor, in my hair brush. I went to the endo and he said it could be due to the extreme Vitamin D deficiency that showed up in my blood test. He prescribed a 50,000 IU unit to take weekly for about a month. I’m continuing that, but my hair is still falling out and I’ve lost almost 60 percent of my hair. I’ve tried not to let this depress me, and usually try to overlook it or laugh about it. The last blood test I took in March showed that my thyroid antibodies were acting up even though I felt fine with the exception of my hair falling.
I think the most aggravating part of this disease as that so little is known about it, it’s unpredictable and there is no real cure for it.
I was wondering, has anyone else experienced these symptoms and is there any way to help them via a natural way? (IE Biotin supplements, increased intake of green leafy vegetables.) Any ideas or suggestions? Also, are there any links to any new studies out there?
Any input is appreciated.
Hi Lisa,
Firstly, yes I have had hair loss, muscle cramps and anything else which is in the text book under symptoms of GD – yep I had or still have them.
I am rather concerned however, that you haven’t been taking the meds and am not sure if any advice I give you will be what you are looking for. However, I have recently had a thyroid storm and therefore my advice would be that the endo is right in giving you the meds and after a life threatening experience I would take anything they gave me.
Many of the anti-thyroid meds have side effects (as do other meds and also herbal remedies too as I am sure you know). I have had problems with a very low WBC the last few months – to the point where barrier nursing was perhaps going to be an option. However, my endo had to put me back on the meds as my thyroid levels were still very dangerous. I am going for the op soon.
I do believe that healthy eating will boost your health but with conditions like GD I think it is matter or taking prescribed medication. My hubby is Japanese and my BIL is a doc over there. He isn’t keen on the blocking treatment but even in Japan they treat this condition as very serious and treat it with thyroid meds.
Maybe it would be best to talk your options over with your endo and see if you can find other alternative meds or treatments.
Sorry not much help.
M xJMO – But I think it’s time to re-think the "natural" remedies, and maybe consider a treatment. RAI, surgery or the multitude of pills.
You’ll feel better.
I did RAI in December and feel SO much better. I’m now on Synthroid since I’ve gone from Hyper to Hypo.
Just a thought… ” title=”Wink” />
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.
I might not be much help here, since I also stopped taking my Methimazole. For me, my issues with the meds were that my hair was thinning and falling out, and my immune system was shot. I have to take my 4 year old daughter to and from preschool everyday and it seemed that I got every single illness that passed through there. Twice I had to stop taking the Methimazole because I got a fever and sore throat – and I wasn’t even on a very high dose. It got to the point where I was pretty much bathing in Purell everyday. So for me, it just wasn’t the right medicine.
Now I am waiting for my Medicaid to kick in and I will be looking into RAI. In the meantime, I am taking Propranolol since my main symptom is a racing heart. Aside from that, I get those cramps and muscle aches every day. I am learning to just keep moving on.
My advice to you is to look at all of your options. It helps to get second opinions, and to talk to others with the disease (which you are doing). I am right around your age (will be 28 in June) so I understand how it can affect you when you’re supposed to be in good health. I am also looking into natural remedies right now, but I have learned that the doctor is usually going by years of experience and care when they recommend the drugs. I stuck with the Methimazole for months before going off it with my doctor’s permission.
Keep your head up. You’ll be in my thoughts.
Hi just wanted to add to Dianne’s post. My MIL is a food specialist and as you all know she was over for a while (it actually all started to settle down and she was a great help = think I was too uptight at the beginning ) anyway she told me not to eat any seaweed (which I was aware of) as its basically like sea kelp which isn’t good for hyperthyroidism also to stay away from soya products etc…
My feeling most of the time is that well if you are going to be taking a pill – its best to be the right meds rather than a lot of herbal mixtures which don’t have any scientific proof for helping our disease.
I don’t want to rile anyone but I get really worried when I hear people coming off meds after I experienced the most frightening experience of my life with the TS -I have went through child birth twice so thats saying something!
m xI would have to agree, I said you stopped taking the Tapazole(methimazole) so any advice here from me would be for you to go back in it. I know about spanish background and I would have to say as with anything there are side effects from what ever we do. Your hair will continue to fall out if you don’t take care of your thyroid. Not taking any medicine to help control it will only make you worse.
it seem that the dr. that you were seeing under your husbands ins. was good to put you a the drug and try to put your thyroid in a better place. As with anything again I say there are side effects but sometimes they go away and sometimes they don’t. There is another drug out there called PTU it does the same as the Tapazole that you are on. I was on that because I was looking to get pregnant and being on that drug was a better choice than Tapazole. Please go back to your specialist and know that this disease will get worse if you ignore it. If you are of Spanish background then you will understand this…. "God gives us the tools to help us but we have to pick up the tool and use it in order to get better". ?Entienda? ” title=”Wink” />
Be good to you and get the help you need to get better. Nothing is perfect and no dr. is perfect, if you find that you dont like this dr. then seek another until you find one that you trust.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.
Thanks to everyone for their concern and responses. I’m not sure if I made it clear in my post, but I did seek radioactive iodine treatment In August of last year. Currently, I’m not taking any meds because my blood tests revealed normal T3 AND T4 levels but my TSH is still low and some antibodies are still floating around in my body. My doc said it was optional for me at this point to take the Methimazole, he prescribed 5mg, but I told him if I feel fine, I would rather not take it, and just let the RAI do its magic, whether I need to go bald or keep gaining weight. I’m fine with it. I’ve made my peace with this pesky little disease. I have another blood test in about 2 months if anything is still abnormal, then I’ll reconsider taking the Methimazole.
Now on to the positives: The fact that I was one of those severe cases, I think my resting heart rate would be at 112 bpm, who knows how it was in times of excitement, not sure because I never really monitored that. I was surprised that a resting heart rate is around 80. I never experienced that until now! My husband also noticed that my hands aren’t clammy anymore, and the fine tremor I had when we held hands is gone. I’m actually thrilled that I can start exercising or running and not get winded after 5 minutes, which actually largely discouraged me from having an active lifestyle when I was hyper. Now that I’m gaining weight, I believe I’m at 132, I’m 5’4. Before I would weigh 120 maximum, and that’s with a very sedentary, non-active lifestyle. I’m starting to walk in the evennings now, and hopefully that will motivate me to start exercising.
Dianne M, thanks for clarifying that the rapid change in thyroid levels were causing my symptoms. Honestly the fact that I wasn’t on any thyroid medications before the RAI treatment, has probably made my body more sensitive to the change. This past week I’ve also noticed that I’m tired in the mornings, and my hair is becoming brittle and feels drier. I’m starting to put olive oil in my hair to help moisturize it every other day when I wash my hair, I’m also starting to take daily doses of 1000 mg of Vitamin C, which help with collagen formation, and I’ll let you guys know if I notice any improvements! I have not yet started to take Biotin supplements but will start soon.
Lisa,
I had to stop taking the methimazole at my dr advice because of a sore throat. Not because my WBC were down, but because they were up too high..the steroid meds I’m on and Methimazole were competeing with one another.I too was Vitamin D low..so my PA put me on some to help with that..don’t know if that was causing the muscle cramps or not, but it did seems to help my bones not hurt as much. I was also low on Folic Acid, so if your in any way thinking of children, might want to have that checked as well. I don’t know if that was low due to Graves, but seeing as how Graves does affect our metabolism and probably the way we use vitamins in our bodies, it wouldn’t surprise me. They could tell me at this point my heart was green, and I’d probably say oh yeah…is it a pretty shade of green or a yucky one*LOL*.
B-Complex is supposed to help with hair and most have the biotin in them. I read on a site designed by doctors that Graves people should be on L-Carnitine…something to do with how our muscles use the amino acids and this vitamin can help with that. That site was thyroidmanager.org. Great source of info from docs all over the world. They also have a search engine there as well.
I don’t like the blood pressure meds much myself, as I too also have a high resting heart rate, but I had a stroke almost 2 years ago…so given the options…I take them and grumble.
I’m scheduled for RAI on April 29, and hoping that I don’t loose anymore hair afterward or gain anymore weight. One thing you may want to have done is a bone scan, especially since you were Vita D low for a bit. Glad to hear your out walking, but be careful if you were low on your vita d…as calcium and vita d affect the bones so much. They have me walking in the pool 3 times a week, well I will start again after RAI..cause it is easier on your bones, and under the eye of a Physical Therapist, they can help you work your muscles and joints in the pool as well.
Also, did you get a baseline with a good eye doc? Hope this helps. Rhonda
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