Hi, everyone, I'm new to this forum.. thanks for reading my question!
General info: female, 20 years old and in college, recently diagnosed with Graves Disease.
I went to my PCP in December for a regular visit (I did have some things to talk about, but it was time for a regular visit). I have recently been having trouble focusing in class and while studying, and quite fatigued (even for a college student). While I don't think I have ADD because I was a stellar student in high school and before, I did mention that both my brothers have been diagnosed with it (by this same doctor), and asked if it was a possibility. He said absolutely not, and I quote, "If you've ever gotten good grades, you do not have ADD." I know that is incorrect, increasing my lack of respect for that physician..
Anyway, he requested routine bloodwork, including TSH.
TSH: 0.36 (.44-4.2 normal)
Late January/Early February 2012:
Early March 2012:
Free T4: 1.4 (0..8-1.8 n)
Free T3: 3.7 (2.3-4.2 n)
C-Peptide: 1.89 (1.1-5.0 n)
Total Testosterone: 22 (0-81 n)
Free testosterone: 0.4 (0.2-5.0 normal; 0.8-2.1 if on oral contraceptives which I am)
Vitamin D: 19.7 (30-100 n)
I also had a Thyroid Ultrasound, which was "unremarkable with no definite nodules."
My BP was 112/72 on March 2nd and 123/66 on March 14. My heart rate was 74 and 72 bpm, respectively.
My endocrinologist diagnosed me with Graves Disease based on the low TSH and high TSI. However, the only symptoms I have are fatigue and possibly anxiety, although I don't have anxiety in general--usually just around exam times. If anything I am more sensitive to cold than to heat (and have always been), absolutely do not have trouble sleeping (it's waking me up that is difficult!), and have never in my life LOST weight. I have gained 5 or so pounds in the past year.. definitely no weight loss, and no increased appetite. I also have a very low libido. Although I can orgasm during sex, it isn't strong, and I have no interest in sex. I can honestly say I thought about sex much more when I was 6-10 years old (long story, but I KNOW what it feels like to be "horny" and I have not felt that way in at least 3 years).
Considering the progressive decrease in my TSH levels (0.36 in December, 0.07 in January, and 0.01 in March), I think it is probable that this was triggered very recently, and by an extremely stressful two or three weeks from late November to early December (personal/relationship issues, not medical). After my first test, I hoped that the low TSH was caused by this event in addition to finals, and thought maybe it would be back to normal after a relaxing spring break.... unfortunately, it didn't.
Obviously, I have high TSI, indicating the autoimmune Grave's Disease. My doc put me on 10 mg Tapazole (methimazole). However, I absolutely DO NOT want to get Radioactive Iodine or surgery. Those treatments are too permanent for my taste, and do not treat the actual autoimmune disorder. He gave me the option of going on the medicine for two years or so, then stopping it to see if I go into remission (he said 30% of people go into remission).
I am going to take my chances; 30% is good enough for me considering the mild side effects and dangers of methimazole as compared to permanently obliterating my thyroid and being dependent on meds for the rest of my life.
I guess my question is, will my doctor be monitoring both my TSH and TSI? I know my TSH will be monitored to see how much medicine I need to adjust to normal, but I would like to know how my TSI levels respond to Vitamin D and other supplements, as well as to being back on birth control.
I have read that autoimmune diseases are linked to hormones; I had been on birth control for two years straight before going off of it from July 2011 to February 2012. I went back on recently because I was getting terrible acne breakouts. Additionally, I have low testosterone, even for women. Any suggestions/advice/comments?
Also, considering my lack of symptoms, do I really have Grave's Disease?
I read about a study linking Vitamin D deficiency to autoimmune disease; any chances TSI levels will decrease when I start taking large doses of Vitamin D?
I would really appreciate any comments or advice! Thanks everyone!
Autoimmune diseases don't always cause symptoms in their early stages...... I have 2 of them, so can attest to that fact.
With a TSI of 314 (range < 140), I'd agree with the diagnosis of Graves Disease. My agreement might limited from here on.
There is really no treatment for the autoimmune disease itself (lowering the antibody count). The symptoms caused by the disease are what's treated. whether it be hyper or hypo; the antibodies will only go into remission when there is no longer healthy thyroid tissue left to destroy. With Graves Disease, the symptoms can get so bad that RAI or total thyroid removal is the only option. yes, both of these are permanent, but once you become hypo, which you will eventually, anyway, you can replace the hormones with medication that's identical to what the body produces.
Yes, autoimmunes are linked to hormones....... thyroid is one organ that produces hormones and while your actual thyroid hormone levels are good right now, the fact that you have Graves Disease, could cause your thyroid to begin over producing at any time.
I do think your doctor might be placing a bit too much faith on TSH, which is a pituitary hormone and not always indicative of thyroid function. I'd do almost anything to get my thyroid hormone levels up where yours are and since you don't have a lot of symptoms, I'd have to question the need for anti-thyroid med (methimazole), at this point.
Your vitamin D is very low - did your doctor suggest a supplement dose? The link between vitamin D and autoimmune disease is simply that a lot of people with autoimmunes, have low vitamin D. No, your TSI will not decrease from taking Vitamin D....... it will decrease when your autoimmune goes into remission (no more healthy tissue for the antibodies to chomp on). That said, vitamin D deficiency can cause hypothyroid symptoms and some symptoms cross over from hyper to hypo.
Has your doctor suggested anything to raise your testosterone (another hormone) level? That needs to be addressed also.
Have you had vitamin B12 levels tested? B12 is not a hormoen, but is essential to feeling well. Fatigue/exhaustion are key symptoms of vitamin B12 deficiency, which is also common with thyroid issues.
The top 5 listed nutrients listed to be crucial for proper thyroid function are iodine, selenium, zinc, vitamin D, and vitamin E. Anti-thyroid drugs are used to lower TSI; I am not sure of what lowers TSI naturally (maybe someone can comment on this). You may also have TSH receptor blocking antibodies (TBAb) blocking TSI antibodies to some degree. Just a thought. :)
My insurance covers second opinions, so while I don't really disagree with the diagnosis, I would prefer a doctor who speaks better English, as well as someone who deals more with thyroid problems than this doctor. There is another endo in my town who actually does thyroid surgeries, so I will probably go to him.
I am against destroying my thyroid, especially if this disease will do it anyway. Why speed up the process? Why not take my chances and see if it does go away or lessen?
My doctor did not end up actually writing a prescription for Vitamin D, but did suggest it. I will be taking probably 5,000 IU per day (my mom buys lots of supplements), in addition to drinking her magical tea remedy she gets from Life Extension.
He acknowledged that they were low but did not say anything about raising them. I will talk to him or my next doctor at my next appointment about it. I really hope one of my doctors is willing to address the low testosterone; I read online that most doctors scoff at the idea unless you've had an oophorectomy or are postmenopausal... of course women have lower T levels than men, but that doesn't mean it should be ignored. T is what gives men their vivacity and will to live and all that.... having low T even for a woman is like a death sentence to me! haha.
No, I have not had my B12 tested, but I will ask at my next visit, or order a test through Life Extension.
Also, while you say TSH isn't a good indicator of thyroid function, I asked about why my T3 and T4 levels are completely normal, and he said they are much less reliable tests than TSH.... I haven't really read that anywhere else so I'm starting to think he just wants the money for my visits. -.-
I just feel like if I'm not exhibiting any symptoms, I should leave it alone for a while. If my TSH continues to lower and my T3 and T4 actually DO increase, then I will be more comfortable taking the medication.. Perhaps I was hypo before the autoimmune response was triggered, and the increase in T3 and T4 has actually put me at a normal level?
Red_Star: I'm not at home right now but I will have to double check that the TSI was actually for TSI.. I think it said Thyroid Stimulating Immunoglobulin Antibodies.. so that's just TSI right?
Anti-thyroid drugs are used to prevent the thyroid from producing too many thyroid hormones; I'd have to think that might not have an impact on antibody counts.
The problem with Graves is that sometimes the symptoms get so horrific that destroying the thyroid is the only way to end them. We've seen people go from happy, normal, intelligent to depressed, raving lunatics threatening suicide and it can go very fast. You have to keep a close watch on it, because once your thyroid begins producing too much hormones, you risk heart issues, osteoporsosis and several other life dangering conditions.
TSH is NOT a good indicator of thyroid status....... My TSH is much lower than yours, but I'm a long way from being hyper, though I have to fight the doctors over this all the time. Many doctors, including endos believe that TSH is all important.... too bad they don't all have thyroid issues and have some jerk trying to treat them by TSH alone.......
TSH is a pituitary hormone. The pituitary gets a signal from the hypothalamus, the pituitary produces TSH to send to the thyroid and in a perfect world the thyroid produces the right amount of hormones and everyone's happy....... Sometimes, things go wrong with either the pituitary or the hypothalamus and they misinterpret what's going on.
I certainly agree that the low testosterone needs to be addressed. That's just as important in women as in men.
Yes, TSI does stand for Thyroid Stimulating Immunoglobulin which is the antibody responsible for hyperthyroidism in Graves' disease. TSI antibodies are also associated with thyroid eye disease and pretibal myxedema. I'll send you Dr Weil's article on Graves' Disease which lists both conventional and natural therapies.
I would definitely get a second opinion. I was just seen by an Endocrinologist, who thought from my first round of blood work and my symptoms (heart pounding, increased pulse, and family history of Graves Disease), that I had Graves. She ordered further blood work, and it sounds like you could get more information about what you have from further blood work as well. When my results came back with no suggestion of Graves, she ordered a radioactive iodine test, which involves going to a lab for some scans after taking a dose of radioactive iodine supposedly very low dose and not harmful). This will apparently tell her if I have Graves Disease or another type of hyperthyroidism. So, another opinion and more tests without jumping into a decision on treatment (especially without symptoms that really bother you) would be a good idea. Good luck!
Hi, I just wanted to suggest for you to go an get a hair analysis from Naturopath Nutritionist. I myself had problems for the last couple of years with being exausted and depressed. Went to regular medical MD and told me I just need to go on anti-depressants which I am a person that does not believe in that. They said my thyroid was fine so as time went on I started getting more fatigued. To clarifiy what type of person that I am...I have trained horses my whole life and can work from sun up till sun down that is, I used to, till I started to have these problems. My sister had gone to a Naturopath Dr to get a hair analysis and that is what spured me to do the same and that pretty much shed the light as to what was going in my body. I have pretty severe adrenal burnout which is something you do not get over with a few good nights sleep. Adrenal glands affect your thyroid which my was low. I am now three months into taking natural supplements from the Naturopath Dr to bring everything back into balance in my body. I have to say this is the best I have felt in a long time. You will have to make an adjustment in the foods you eat as well. The MD Drs dont tell you that. Try to eat whole foods and mostly organic when you can or can afford it. Soy is one of the worst things for your thryoid...it will totally mess up your endocrine system and soy is in just about every packaged, processed food there is. I am speaking from experience and the changes I have made has made me feel like a whole person again. I am not saying that you have the same problem but what I am saying to get a hair analysis to get to the root of your issue. I just hate hearing about people with ill heath and not get good results from MD Dr's. There are other alternative to bring your health back which many of us are unware of. You are too young to be having thyroid trouble. Best of health to you.
I was diagnosed with graves disease when I was 9 years old. It was the worst thyroid storm that had been documented in 50 years. I was probably a week or two away from a heart attack. I had to take radioactive iodine to obliterate my thyroid. I had no choice, it was the only thing that could save my life. I would suggest trying all courses before taking this route. It *****. I'm 21 now, and I feel like you get more symptoms than other people because it's mostly scar tissue. And the truth is if you can catch it time, there are other options. Just remember when looking into alternative medicine, to research things. A lot. The same for regular medicine. Doctors tend to be naturally suspicious of herbals. My sister has hypothyroidism and was almost killed because a Nat. doctor told her to drink several bottles of iodine. Doctors only test your tsi and your tsh. There's like 6 or 8 hormones that your thyroid effects. They don't consider those important, even though they are. It could be why your diagnoses is off. You could have a different pituitary disorder. Vitamin D is helpful to most people, even if you live in a very sunny place. I don't know if you need such a high dosage. It could cause farther problems for you. And remember take your vitamins at way different times then your prescription. If you don't your pill will just not work.
I don't exactly know the cure for graves before your thyroid is obliterated. But I'm almost positive that I know the person who will. The same person who can cure my disease. A doctor in Seattle WA, who practices ancient Chinese remedies. Herbals and stuff. Warning: the teas usually smell and taste awful, although pills are available for some things. Let me explain.
My thyroid is scar tissue besides a small little part. He can make that small part active enough to produce the hormones my body needs. Couple bottles of pills a month. I remember one of them was a kidney cleanse.
I took them for one month, was tested, and thought he was a quack. My levels were lower. I found out it was because I was taking them when I took my regular pill. (You have to keep taking it while on these pills, one of the reasons it's dangerous.) I took them the next month the right way, got tested, and my levels were a couple points away from being NORMAL. Crazy, right. The key about doing this is you have to get tested every month, so you can change your regular pill dosage. Generally you're only allowed a test every six months, unless signs indicate you need one sooner. Before I could take what would most likely be my last month my regular doctor told my mother that he didn't see this as real medicine so he wouldn't allow another test to be taken. ****. I'm still going to try to do it eventually once I get insurance again, but I'll have to lie and say I feel like crap or something, and then if necessary wait 5 months, and take them in time for my scheduled blood test. The point is, if he can cure me he can probably cure you. In fact, I think he told me so. He is also known for curing a bunch of incurable diseases and viruses. Like diabetes, hepatitis, herpes, and so on. I have literally seen this.
And if you're to far away, you order over the phone after you fax him your medical record. Although seeing him in person is better. I'm pretty sure he does that thing were you can read people by looking in there eye. Please look into this guy. My disease isn't the worst out there, but it ***** having all these side effects (fatigue is one of many), and needing to depend on something for the rest of your life. Plus it's scary. What happens if you can't get you're pills for some reason?
His name is Dr. Xue Zhi Wang, OMD, LAc (It's pronounced Dr. Wong).
He also does acupuncture. I thought it was absolutely amazing. I wish I could have done it more than once. It cured me of the migraines I was having every day, for two weeks straight, as well as my more common headaches. Although I still have them more than I should. it's something that happens with thyroid diseases.
Look at these reviews, ignore the last one. (They didn't like the acupuncture)
Make sure you ask any questions you have, don't let him intimidate you. He's very nice. (This is explained in the reviews)
4115 University Way NE
(between 41st St & 42nd St)
Seattle, WA 98105
Neighborhood: University District
Hope my very long post helps you. If you're not open to alternative medicine already, please try. I'm afraid if you don't you'll most likely end up where I am.
I had subclinical hyperthyroidism for 3 months since I was injected imaging dye, which was a big mistake in my life. The reason for the mistake was I trusted Dr too much and I am still making mistakes by trusting Dr. After the CT scan, I trust a Dentist for a filling, which made my tooth worse.
After I had the hyperthyroidism, I went to see an Endo. He give me beta-blocker and anti-thyroid medicine. I took for a week and then I refuse to take them because of the side effects. I look for answers on the web and found out the No. 1 to treat subclinical hyperthyroidism is patient. Another Endo did tell me it takes 3-6 months. Now, I am feeling OK. If I had taken all the medicine, I would not recover naturally.
My TSH reduced from 0.3 to 0.15 to 0.07 to 0.05 in a month. Now, I am at 0.3 again.
So, the bottom line is to make some decision yourself. Not trust a Dr. 100%. Only 50%.
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