I visited my dr yesterday because of palpitations that I have been getting, the dr sent me for a blood test, including thyroid. I have been feeling strange for a good couple of years now. I have seen drs and specialist to help with aching limbs and constant pain in my back and legs. They have been unable to help me find out what's wrong as mri's and physio behave shown nothing wrong.... But still after feeling terrible I revisited my go with another cluster of problems, including lethargy, loss of libido and significant hair thinning, I have very dry flakey skin which seems to come and go, I have always suffered with migraine , I have dry gritty feeling in my eyes and the occasional dizziness, I am however expecting the blood test to come back negative as with all others I have had they too are always negative. But I have to this day never been checked for thyroid , do maybe this might shine some light on what's wrong. Please say I'm not crazy....
The dry gritty feelings in your eyes and the palpitations are certainly compatible with symptoms of Graves. The aches and pains I have but are due to arthritis. My physio thinks it is some type of inflammatory arthritis, not the wear and tear kind. If so, this means it is autoimmune.
Removing sugar from your diet helps a lot.
It almost sounds like you have both Graves disease and Hashimoto's thyroid disease.
Hiya.
Prior to my graves diagnosis i suffered with really achy legs, it was often difficult to climb stars. This all improved once i started on the meds. I got a few other syptoms you have described too.
Hope you get some answers x
I agree with Linda, you may have both GD & HT. I have both, and believe that may have been a reason why I went undiagnosed for either for over 20 years. When tested in most of those years my TSH was always "in the normal range." It's always best to get copies of your lab results, paying attention to where you are at within the range, and knowing whether you are tested for free or total T4 and T3. The antibody tests may include TRab which shows autoimmune involvement, TSI (Thyroid Stimulating Immunoglobins), TPO antibodies which destroy the thyroid and Thyroglobulin antibodies which are also indicative of HT. Those are the most common tests I have had run.
Hello everyone and thanks for you replies and advice. I appreciate you words and will keep you all informed, I have to see my GP again on Monday for the results of the blood test so will let you all know what happens x
I have graves disease and went undiagnosed for years, I have your symptoms especially the legs it is a unique feeling undescribable no libido, and bad hair loss. now taking methimazole still not feeling well, but good luck with your doctors
Hello All,
I'm new to this site and first time writing. I'm a 47-year-old woman. I've had symptoms of hyperthyroidism for almost a year now but didn't start medication until about 4 months ago (methimazole (tapazole) 5mg - 3 times a day). The doctor told me it would be a slow healing, probably several months. I have felt somewhat better, but it goes in spurts. I have days when I feel strong and energetic, and then the next day I feel fatigued and need to rest all day. It's never consistent! About 2 months ago I was having horrible constipation and my doctor suggested I take 2 tablets/day instead of 3. This has helped tremendously. I recently had a blood test that showed my levels are within normal range, but I still feel awful most days. My legs are extremely weak and I often feel like I'm having an anxiety attack (heart palpitations and breathlessness; I need to sit down if I'm standing). I also don't sleep soundly, so I get very tired during the day. Some days I get irritable and snappy. I'm glad to know that all of this stems from my thyroid issue, and I'm not going crazy (like some people I know have suggested - it's difficult when people don't believe you because you don't "look sick"
. I used to be very successful in my career and very social. I was active and hiked and biked. I hope that one day soon I can reclaim some of my previous qualities that I treasured so much...and took for granted. I am fortunate that I met a wonderful man (now my fiance) who is patient and supports me in every way. I couldn't go through this alone. I welcome any feedback that you have, especially if you have experienced a full recovery, or significant improvement in your condition. Sometimes I get depressed, thinking that I will be this way the rest of my life, and losing hope that recovery is a possibility. I believe in natural healing and eating healthy and taking supplements. I also am working on getting my body alkaline (most of us are acidic, which is not good for our health). So maybe things will get better and I need to be patient. Healing emotional challenges and removing stressful life circumstances are important in the healing process, too. Thanks for reading this - it's comforting knowing I'm not the only one out there with this condition!
Welcome, Veronica, I hope you get the help you need. On another post Linda mentioned Carnitine... I'm still not exactly sure about it and perhaps she will comment more about it here, too... I am still investigating it myself, but I am suspecting I am genetically carnitine deficient and that it is the root cause of being miserable while "in the normal range" with the thyroid labs. Now I eat more beef which is rich in carnitine, and I can function better with my thyroid symptoms.
Fern, you can get your carnitine levels tested by a blood test which of course has to be ordered by your doctor. A Naturopath might be able to order this as well. II know I was carnitine deficient when I was tested. I am not a big red meat eater so that is probably why. Also I had thyroid antibodies when I was first diagnosed and they are gone now. They went away after I started Carnitine supplementation.
Thank you for the carnitine info, Linda and Fern...I will check into it!
Regarding carnitine as related to hyperthyroidism...I just found this article about carnitine helping with the treatment of hyperthyroidism (see link, below). I am always researching and never came across this info. Also, no professional I have been to has ever even mentioned it. Thank you Linda and Fern!
http://www.lef.org/magazine/mag2007/dec2007_report_thyroid_01.htm
It is Acetyl-L-carnitine that was the most effective. I tried regular L-carnitine and combination L-carnitines and although I got a small elevation in my TSH with the regular L-carnitine, the Acetyl-L-carnitine combined with Methimazole is what really brought my TSH up very quickly to the normal range. Also got rid of my antibodies.
I am not surprised that professionals don't know about it or won't approve of it. I have worked for doctors for 40 years and doctors "follow the herd" which means that even if new evidence is presented to them, they don't buy into it because they tend to stick with what they have always done even if their patients would benefit from a new, less toxic treatment. My boss, who is a genetic metabolic researcher, told me that L-carnitine would not hurt me when I showed him the article by Dr. Salvatore Benvenga, who did a clinical study on the use of L-carnitine in hyperthyroidism, so I tried it and got dramatic results. With the Acetyl-L-carnitine, I found that you do not need a high dose at all, in fact the lowest dose combined with Methimazole would probably work the best. You will probably find that you can lower your Methimazole dose when your TSH rises.
I know what you mean about the "follow the herd" mentality of many doctors, but it seems like endocrinologists are even more rigid about it. I think mine is a newbie, though, so he may be a little more flexible. My PCP wouldn't order the test because it wasn't on his list, and because anything that smacks of the thyroid being involved needs my Endo's approval. So I'll see what he says next week.
I'm very much into "alternative" treatments and don't usually believe in conventional medicine, although I realize that there's sometimes a need for it...but I use it as little as possible! Anyway, one doc I have is a chiropractor who also is an expert at "muscle testing" (applied kinesiology). She's the one who helped discover that my thyroid was overactive. She sent me for a blood test for that. She's in Arizona, and I moved back to Michigan last year. I'm going to a clinic now where they specialize in hormonal issues. The doctors there are D.O.s (Doctors of Osteopathy). D.O.'s practice a little more non-traditionally, or holistically, believing in alternative treatments, when possible. However, both of these women never mentioned carnitine. I guess I'm a bit surprised. Here in the states, a D.O., chiropractor, or naturopath can usually order several types of blood tests through a lab. Perhaps it is similar in the U.K.? My D.O. believes in supplements and diet changes, and says that " an "anti-inflammatory" diet is important. Not much you can eat on it, however! I'm into organic and healthy eating, so I do my best. I also have been using organic essential oils in a diffuser (Cedarwood is one that is calming, so good for an overactive thyroid). I use "clean" products daily, too (toxin free; organic when I can). I'm going to get some acetyl-L-carnitine, though...that's for sure. Thanks!
Some people who lean more towards holistic treatments will treat their hyperthyroidism with Bugleweed, Motherwart and Melissa in addition to acetyl-L-carnitine. I did not find that the acetyl-l-carnitine did anything on its own. It was when it was combined with a low dose of Methimazole that it improved my TSH results.
Thank you for the info!
I just ordered some acetyl-L-carnitine...can't wait to try it. After reading the article I found (the link in one of my previous posts), and knowing that it has helped you (Linda), I feel very optimistic about it alleviating the muscle weakness in my legs.
Let us know how it works for you. Also keep close tabs on your blood work. I found that it works very fast and I have been playing with the dose, sometimes withholding it if my TSH is what I consider to be too high or adding it if it falls too low. I am fortunate that my family doc will let me do blood work at least once a month.
When I was on Methimazole it was tortuous. I don't have copies of all my lab work that was done the first year under my #1 endocrinologist, but #2 said #1 had made my thyroid too low. Endo #2 didn't get my TSH to rise until after he lowered my dose slightly because I was having so much trouble -- I was like a walking zombie and very confused. I fell face down in the street and didn't know why. It was between getting the blood draw and seeing the endo. When he saw me all scraped up on my face, we talked about it and he lowered my dose by one pill one day per week even though my TSH was at zero.
Three months later my TSH was at 2.53, and I felt well enough that I thought my thyroid was too high again. I was pleasantly surprised, but asked that the doctor would lower my dose again. He did so reluctantly, again by one pill per week, I think, and when I did the next labs after 2 months, my TSH was above the normal range, so the office called to have me cut back on my MMI dose.
After that I decreased it on my own if I felt like I needed to when the doctor wouldn't, and informed the doctor what I had done at the next appointment. I was able to keep the TSH in the normal range that way for the next year and a half, and the doctor didn't complain since my numbers were right in his book.
It was a year ago in December when I actually went off the MMI altogether, but then I felt the need for thyroid supplementation which Endo #2 was not willing to prescribe. I went out of state (from Utah to Colorado) to see Endo #3 with similar result. She was afraid to give me "the smallest dose" for fear I would go Hyper. She did tell me, though, that I had antibodies for both Graves' Disease and Hashimoto's Thyroiditis and that the HT would eventually destroy the thyroid as surely as if I had Radioactive Iodine. She just wanted me to have the RAI and get it over with so I could be given replacement hormone. I refused because these endos have never given me any reason to trust them to give me adequate replacement hormones.
So it was in May 2013 when I saw Endo #3. My insurance wouldn't pay because she was out of state and not on the contract. Endo #2 dismissed me as his patient because I went elsewhere for a second opinion. We had been to various doctors after our old one retired before I was dx'd with GD, but had been to a D.O. for a year or so when my husband started having problems with shortness of breath and which escalated into more symptoms without the doctor zeroing in on his actual problem of Heart Failure. So we got a new PCP, a young, progressive M.D. who seems well versed in integrative medicine -- about the same time as I went to Endo #3.
Because I lived so far away, Endo #3 wrote a letter instructing my PCP to run the labs she wanted me to have and would have seen me again in a year, but I showed the letter to my new doctor and when we discussed it, he agreed I needed treatment she wouldn't give.
He gave me various options and I chose the Cytomel (liothyronine), which eventually I built up on to the point of taking 1.5 tablets per day (5 mcg per tablet) and added 50 mcg the last 6 weeks before the end of November last year. At first, the labs showed improvement on my TSH levels, rising from borderline low to about 1.0 range (0.4 - 4.0) and I felt much better.
But my labs in November showed it back down to 0.009, so my MD got cold feet and sent me to another Endocrinologist about an hour's drive away. I was then taking 25 mcg Levothyroxine and 5 mcg Liothyronine in the morning, and 1.25 in the afternoon At that appointment in January, my blood test showed my TSH at about 0.18, I think. My free T's hadn't been above range any time, and my total T3 that this Endo #4 ordered was also well below the top of the range. Still he wanted to take me off the Liothyronine. I reduced it to 2.5 mcg in the morning and 1.25 in the afternoon but I couldn't handle less than that. I wrote him about it and I will see him next week, one month after my last appointment.
I just need to find out more about the acetyl-L-carnitine and how my gene for the carnitine looks so when I ask him about it I will be somewhat informed. My guess is that I am genetically lacking and need the supplement which would restore at least my ability to produce all the TSH that my body really is calling for. Even if it makes my TSH high then I believe it would be accurately showing that I do need the thyroid supplementation.