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I’ve been recently diagnosed with Graves’ & am having difficulty navigating through my disease and options available locally. I’d like to find others to network with.
Fingers crossed…thanks!
Hello – We don’t currently have a support group in Cincinnati, but if you’d like to send us your contact information off-board at info@gdatf.org or 877-643-3123, x101 or 102, we keep a running list of areas where patients are interested.
There is a group that meets quarterly in Columbus, but that might be a bit of a haul for you.
Hopefully, you will get some other responses here. Also, a reminder to exchange any personal information (phone number, e-mail, etc.) via PM. You can send a private message to another poster by viewing one of their posts and clicking on the PM icon that appears a few lines underneath their screen name. The system will “ping” whatever e-mail address the other person used to sign up to let them know that they have a private message waiting. (You have to be logged in to the system in order to view your private messages).
Take care!
Hi Christina, I am in Cleveland which is still 5 hours a way. I was diagnosed on December 6th and had RAI on December 12th. I have a wonderful doctor who is one of the top 100 Endocrinologists. I had atrial fibrillation and elevated liver enzymes from statin cholesterol medicines, my endo wanted to do the RAI as soon as possible. My heart rate when I was admitted was 190-200 and they had a difficult time bringing it down and of course a cardiologist became involved. I a new at this so maybe we can compare issues.
Bobbi, I’ll sen my contact info to address you gave me. Thanks.
Karen, I hope you’re doing well. Sounds like you were very sick. My situation is not as dire and maybe that’s what is making it so confusing to me. I’ve had subclinical hyperthyroidism for at least 4 years…but I suspect it’s been much longer than that. My TSH hovers around 0.35, my free & total T3 & T4 were tested for the 1st time in December. They were all normal. I was negative for TSI antibodies, but positive for TRAb. An ultrasound showed multiple nodules, the largest at 1.6 cm and an enlarged thyroid. When I went for the biopsy, the surgeon said the largest nodule was actually right around 1cm, so no biopsy…but he suggested surgery. I then asked for a thyroid scan w/ uptake and it showed uniform uptake of gland at 61.3%.
During testing, as is true throughout the past several years, my hyper symptoms with up with stress and down without it. My symptoms are a racing and bounding heart, tremor, nervous on the inside (and out), irritability, anxiety, unable to sleep, getting really hot at night, memory and thinking issues, irritable bowels. So they diagnosed me with Graves’ and subclinical hyperthyroidism. Started on tapazole and beta-blockers which decreased alot of the symptoms almost immediately. A month after starting it, I came off of it for the scan and my symptoms were the worst they’ve ever been. But my labs were the BEST they’ve ever been. My TSH had come up to the normal range and my TRAb was normal too. But I felt like I was falling apart. Muscle aches, joint pain, stomach woes, depression, anxiety, nervousness, palpitations (although my heart rate stayed down).
With normal thyroid labs, I’m not sure what to blame all that on. I’m also taking 50,000 units of Vit D twice a week, so who know. The most interesting thing is that after being off the tapazole for a couple of weeks, my thyroid labs continued to improve, but my symptoms worsened. This past Friday I went back on the tapazole and by Sunday I felt better again. Makes no sense to me.
So now I’m not sure that treating my Graves’ and subclinical hyperthyroidism is the answer…no matter what the treatment is…ATD, RAI or surgery. I am beyond confused. But the worse part is feeling crazy when I know I’m not. Since I seem to be reacting in ways in I wouldn’t expect, and since I also have mild hyperthyroidism and mild Graves’ (according to my endo)…I’ve been thinking about going to Cleveland Clinic to get another set of eyes on this. But there are other days when I just want to stop all testing and treatment and dr visits…whatever I was feeling before all this, while not good, was not this awful or confusing.
Sorry I’m rambling. Just sort of at my wits end…
Christina De…. Hyperthyroidism — whether full-blown or subclinical — needs to be treated. The damage that being hyperthyroid causes — like bone loss and muscle wasting — may occur more slowly with subclinical hyperthyroidism, but it DOES occur. You need to stop it. I can fully understand why you would prefer to ignore it. From what I’ve read, that is not necessarily in your best interest.
Christine, if you come up to Cleveland, I will give you the information on my Doctor, his name is Dr. Z. Madhun and is one of the best Endocrinologist in the area. I have never had a more dedicated doctor in my life. He admitted me to the hospital the first visit I had with him because of the atrial fibrillation, I had blood drawn every morning at 4:00 A.M., and Dr. Madhun was at the hospital by 6:00 A.M. seven days a week, sat down and explained exactly what was going on and answered all the questions I had.
Your symptoms sound like how I was feeling, I had 30 lb. weight loss, when I got into my car I had to lift my legs to put them in the car, my fatigue was unbelievable, but I kept getting up every morning and going to work. I did not have thyroid storm but my thyroid was fighting my heart (in layman’s terms). The cardiologist did an echocardiogram and my heart was fine thank god but it was all related to the thyroid. Also, no sodium, I am being very careful because I am still hyperthyroid and my blood pressure and heart rate go up if I have sodium. It will take a little while for everything to settle down but I feel for you, from day to day I do not know what to expect. I have bought some books on Graves Disease and diet and exercise. I am trying to gain as much information as I can. My numbers were way out of whack when all this started. My Doctor also has me on Vitamin D and Magnesium OX 400 mg.
Just a couple of quick notes…
1. For patients with subclinical hyperthyroidism, it’s common to “watch and wait” without treatment to see if this progresses to “overt” hyperthyroidism. However, treatment is recommended if the patient is symptomatic or at high risk for cardiac issues. You can read more in the ATA/AACE guidance in the “Treatment Options” thread in the announcements section at the top of the forum. If you do a search for “subclinical” that will get you to the right place.
2. It’s believed that there might be a link between low vitamin D levels and thyroid dysfunction. For those who are interested in Vitamin D supplementation, talk to your doctor first about getting tested first to determine if you do have a deficiency.
Karen ~ I will tuck that info away. And if I decide to go to Cleveland, I’ll PM you! Hope you’re feeling well!
Kimberly ~ The information you gave me is fascinating. Oh, and interestingly enough…my vitamin D was checked. It was 14.9 (standard range of 30-100 ng/ml). Not sure where that leaves me. Fix that and see what happens to thyroid function? I’m currently taking 50,000 units twice a week.
As an aside, I think I’m about to be doctor-less for a period of time. I was seeking a 2nd opinion since I was looking at surgery vs meds (RAI pretty much ruled out due to possible eye involvement, plus multiple nodules). The soonest I can get into another endo for that 2nd opinion (one who works a lot with thyroid patients) is this summer. So I was thinking of putting my surgery off until then, and just continuing with the meds. However, my endo now feels like our relationship doesn’t have the level of “trust” that she’s accustomed to from her patients & now our relationship is significantly strained & it’s apparent that she’d prefer not to work with me over the next 6 months. She will if I don’t have anyone, but she did suggest my PCP as someone who could monitor my tapazole until I get into another endo, since I’m questioning things.
Just another complication! lol
@ChristinaDe – Unfortunately, long waits for specialists are fairly common, although 6 months is one of the longer ones that I’ve heard of!
A direct phone call from your primary care provider can sometimes help cut through the red tape, or asking to be placed on a cancellation list can sometimes get you in more quickly as well.
It sounds like at least you have the option of staying with your current endo, even if you both feel this isn’t a long-term solution.
Take care!
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