Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hello everyone, I'm new to this board and thought it might be a good place to talk with others who may be going through or have gone through what I am going through in regards to their Grave's Disease....
I was diagnosed with mild grave's disease in 2007 and was put on PTU. I started to feel better after about 6 weeks and remained well until now. I just went to the doctor and explained I was having the same type of symptoms I had three years ago before the PTU. My symptoms include extreme anxiety fatigue, anxious, nervousness, mood swings (feel like either screaming or crying), muscle aches, heat intolerance (feels like I'm burning up on the inside), increased sweating, increased bowel movements, eye irritation and frequent wakings at night. The best way I can describe how I have been feeling most of the time is that I feel really reved up or wired, but yet wiped out at the same time. My TSH this last test was .30 and my doctor said I was stable and to keep doing what I'm doing. I couldn't believe it because I am not feeling well at all and I can't take much more of this!!!! I took it upon myself to increase my PTU to three times a day instead of two. I used to be on three, but I was slowly weaning off. I told the nurse this, and she didn't say anything about me increasing the dosage. I have an appointment on friday with my doctor and would love some advice on what I should ask my doctor. I see a regular internal medical doctor. I think it's time I see an endocrinologist. Any suggestions on what I should do? I'm at my wits end and I just don't know what to do anymore. I feel like I'm always brushed off, my doctor always says, well you are just borderline, your symptoms shouldn't be so bad, and it's not bad enough for RAI or surgery. I guess my main question is if it is possible that some people need RAI even if their condition is considered borderline? Sad and confused:(
I was diagnosed with mild grave's disease in 2007 and was put on PTU. I started to feel better after about 6 weeks and remained well until now. I just went to the doctor and explained I was having the same type of symptoms I had three years ago before the PTU. My symptoms include extreme anxiety fatigue, anxious, nervousness, mood swings (feel like either screaming or crying), muscle aches, heat intolerance (feels like I'm burning up on the inside), increased sweating, increased bowel movements, eye irritation and frequent wakings at night. The best way I can describe how I have been feeling most of the time is that I feel really reved up or wired, but yet wiped out at the same time. My TSH this last test was .30 and my doctor said I was stable and to keep doing what I'm doing. I couldn't believe it because I am not feeling well at all and I can't take much more of this!!!! I took it upon myself to increase my PTU to three times a day instead of two. I used to be on three, but I was slowly weaning off. I told the nurse this, and she didn't say anything about me increasing the dosage. I have an appointment on friday with my doctor and would love some advice on what I should ask my doctor. I see a regular internal medical doctor. I think it's time I see an endocrinologist. Any suggestions on what I should do? I'm at my wits end and I just don't know what to do anymore. I feel like I'm always brushed off, my doctor always says, well you are just borderline, your symptoms shouldn't be so bad, and it's not bad enough for RAI or surgery. I guess my main question is if it is possible that some people need RAI even if their condition is considered borderline? Sad and confused:(
Doesn't your doctor run other thyroid lab tests beside the TSH? TSH is not ideal to use as it is affected by thyroid antibodies and is a pituitary hormone. Your doctor should be ordering the Free T3 and the Free T4 tests. These get dosed by the ATD (antithyroid drug) you take...especially to the Free T4.
If this were me, I'd want to have copies of all of my thyroid results to keep in a file. I'd want to lab often, every 4 to 6 weeks to work on taking the right amount of PTU to keep my Free Ts at mid ranges to see how I felt it there at. Then I'd want to take the PTU in divided doses of three times a day, every eight hours, to give better coverage and less yo yoing of hypER/hypO symptoms.
Please do a search on all old threads/posts about this.
I would also look for another doctor to be medicated and labbed properly.
Please post any lab results with the ranges, so we can better help you. Also include how much PTU you were on at the time and how often.
{{{hugs}}} :-)
P.S. Most Endos are not good doctors to go to. 80% of them treat Diabetics and not enough on thyroid conditions - either hypER or hypO. So many here at the GD board are on their fourth or Fifth Endo.
I had this same experience while on methimazole, I was fine for many many months, then I needed less (I became hypo) and then needed more again, and then much more! So what you're describing isn't abnormal for Graves, but you do need your doctor to be looking at the correct labs!
I guess I'd also say: if you're feeling brushed off, find another endo. I went to two before I found one who knew what he was doing and was sympathetic. This disease isn't to be messed with, you need someone who will take it seriously. Good luck!
Any doctor who only doses by TSH is a twit and should be replaced. You need to find a doctor who will check your FT4 and FT3. Those are the hormones we feel.
I recommend a book called "Thyroid for dummies." It was really, really helpful for me in helping me understand which labs were important to get and how to understand them.
Hyperthyroid symptoms can be very, very similar to hypOthyroid symptoms so you should never increase your own dose of anti-thyroid based on how you feel. You need to have your FT4 and FT3 levels before you should ever go up or down with your thyroid medication. You may be hypothyroid now and it can feel just as bad, if not worse than hyperthyroidism. I'm so sorry that you have a twit for an endo. I know just how bad being mismanaged on anti-thyroid drugs can feel. Please go back to your old dose and see a new endo ASAP!!!
Most of us who were able to use anti-thyroid drugs successfully had to continually get our dose decreased, and not usually increased.
So sorry you are going through all of this and I hope you feel much better, soon!
Big hugs!
Hannah
http://www.altsupportthyroid.org/doctor.php
Here is another one:
http://thyroid.about.com/od/findlearnfromdoctors/Find_Top_Thyroid_Doctors_Learning_From_and_Dealing_With_Doctors.htm
I hope something is helpful! When you thyroid is out of control, it effects everything, so I know how important it is to get balanced, and hope you can find someone who can help you, soon!
Thanks so much for taking your time out to help me out.... I appreciate it more than you know:)
Tina
The Thyroid panel is likely only just the TSH and the Free T4. Here's a link explaining why the Free T3 and the Free T4 are the proper tests to run and why the TSH is not reliable to use (besides it being a pituitary hormone, not adjusted by any meds one takes and it lags about six weeks behind the current Free Ts readings):
http://www.ncbi.nlm.nih.gov/pubmed/12915350?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed
{{{hugs}}}
Thanks everyone:)