Thyroid Disease suffers

[shelleyd2008]

I went to 3 different doctors before I was diagnosed with hyper thyroid, and that was with having a huge goiter! I think a lot of doctors are just in it for the money, and don't really care. I don't know how many times I was diagnosed with bronchitis, or told 'well you could stand to lose a little weight'. I lost over 40 pounds in 6 weeks when my thyroid went hyper!! from 178 to 130. Now tell me that's normal?

 

[sweetcorn]

I was diagnosed with Graves 3 years ago but I'm sure I had it for several years previous based on my symptoms ( my weight went wildly up and down by 20 to 30 pounds without me eating more or dieting, i was tired all the time, forgetful , and had tremors which i attributed to low blood sugar so I'd eat , and hair loss which I told myself was just that post pregnancy "shed" ) I was sure I was just lazy, crazy and fat when one day my neck itched and a rubbed it and went hmmm . Even being a nurse , I hadn't caught on. So I go to work and asked a few fellow nurses , does this look like a goiter to you ?? Uh huh sure enough. I made a Doc appointment and I was sure with my weight going up , tiredness , depression i t would be hypothyroid but NO ! Way hyper ! My resting heart rate at the docs was 130 and my bp was 30 points higher than ever before. I was tired because my heart couldn't keep up! Walking around to clean just made me winded as all get out , no wonder ! I had a small baby at the time so I did not want to do radioactive ablation right away so I attempted to achieve remission. If I had the radioactive iodine I wouldnt have been able to hold her , etc, for several weeks and she too young for me to explain why to and I couldnt do it to her . In many other countries this is the first treatment of choice and radioactive Iodine is 2nd. I took methimazole , an antithyroid drug for two years and am currently in remission. I actually had to quit my nursing job until my thyroid was under control because the of the brain fog / spaciness , I did not trust myself to pass out medications !! I also still concentrate on eating foods that supress thyroid , beans, nuts , cabbage family veggies, tea. I also take a couple supplements which I have found helpful , L carnitene and melissa . Hopefully I will stay in remission so I don't have to go through radioactive ablation and have to go to artificial thyroid hormone replacement . I am very grateful I do not have the eye disorder common to Graves.

 

[shelleyd2008]

Ah yes, I forgot about the tremors. Mine were so bad in the beginning, that I would drop just about anything I was holding, unless it had a handle. I did have the eye thing as well, but after I first started the meds, that as well as most of the other symptoms went away. I still had the elevated BP and HR, but of course I couldn't see those affects.

I did have the radio-iodine treatment, and I wish I wouldn't have. My HR and BP were not that elevated, IMO, and like I said in previous posts, at least I felt normal then. My BP was usually around 138/88, and HR was around 110 I believe. I do not think that is too high. But oh well, nothing can be done about it now. The radio-iodine took care of that.

I got my test results back from the dr today...it said my levels were normal, so I guess I get to go beg for something different. I still don't feel right.

 

[sweetcorn]

I am really glad , so far anyway , that I was pushy and said "noooo , I don't want the radioactive ablation, I wanna try for remission first ! " Trying for remission gives you a chance at living without meds and once they fry it off , you are on meds for it for life. The other thing that scared me , besides not being able to cuddle my lil one was that sometimes the ablation can cause the eye problem to start , when you had not had it before .

I hope you find out whats up shelleyd, if you don't feel right , you should listen to what your body is telling you !!

Ohhhhhh that reminds me , speaking of bodies talking to you! Before I was diagnosed with Graves I had this absolute obsession for peanuts ! I mean, I was shelling peanuts once or twice a day for snacks and eating peanut butter toast every morning for breakfast. Come to find out after I was I was diagnosed upon doing some research that peanuts inhibit the production of thyroid hormones. Isn't the body cool , that it told me I needed peanuts !! Amazing !

 

[shelleyd2008]

They tried the PTU with me, as well as Tapazole, but I was very bad at taking medicine. Especially since I was supposed to take it 3 x's a day. And it wasn't even right yet. I had a lot of trouble with my insurance, and would stop taking it, and go to a different doc, and they wouldn't listen, so they would put me on the wrong dose. So i'd start all over again, with blood work, and increasing meds, and insurance problems.

The dose of radio-iodine I was given was supposed to, hopefully, slow my thyroid down, but I guess it only needed a little to knock it out.

if I had known it would make it stop, I wouldn't have had it done, but the doc said there was a very small chance it would stop.

But I had a 13 mo old at the time, and he had to stay at the sitter's all day till dad got home, and then didn't understand why he couldn't give mommy a kiss...it was terrible. But I think it was only like 3 days that it was like that. After that it was supposed to be safe. Hope so, cuz he has always slept with me, except for those 3 days.

 

[sweetcorn]

Yup , it's very hard when you can't snuggle your little one and they don't understand why

I was lucky to have good insurance and a supportive doc. I don't remember what the odds were , but I know remission was the less likely outcome, so I know I was lucky. I just hope it lasts ! Although ,that lil baby just turned 4 so if I do relapse ,she 's old enough now to understand what's going on and older so she doesn't need me to hold her constantly to be fed, changed, like she did then . Mine was younger than yours at that time and they told me at least 1 week no holding her , up to two before the radiation would be all " gone " , accccccck. She still wouldn't be a bit happy about it though , she's my constant sidekick and lap buddy , lol.

 

[shelleyd2008]

Yeah mine is too, especially when he knows he shouldn't be hugging all over me (i.e.-he's sick or I'm sick) Mine is almost 4, but I think it was easier then, he would have to go to someone else's house if I had to do it now.

 

[sweetcorn]

LOL yup . I picture much whining !

 

[Sugar Sand Farm]

Jackiedon Are you sure its fibromyalgia. I was in so much pain when i was one Levethyroxine that I thought that is what I had. I would lay on the couch at night and my legs,feet,lower back would throb so badly I would sometimes cry out. Nothing I took seemed to help. Sometimes the muscles in my feet would cause my feet to stiffen and turn to the side, and my husband would have to pull on them until it would stop. I had several tests that came back negative. I do not have insurance so all this really put a hurting on us. That is why when I received this newsletter about the side effects of levothyroxine I immediately started writing down all my symtoms that matched the article. I didnt ask my doctor i told her I wanted to go back on Synthroid and see if this was the problem. The very next day I felt a difference. The aching in my legs was alot less. By the weekend i had no pain. my sister has the same thing but she doesn't think it was the meds. I know it was. Its worth it to try and change your meds. Even if you only try it one month. I am sure you will know the difference. Micki

 

[firem3]

Quote:
You need an endocrinologist, firem3. I see a good one at St. Vincent's East in Bham; good as in pro-active. I'm in low "normal" range on thyroid, but have lumpy/bumpy thyroid, fullness/choking in throat, weight gain, achy limbs, foggy tiredness, etc. A lot of docs wouldn't have put me on anything, if they were a by-the-book (or by-the-normal-range) kind of doc. But mine is proactive and sees the connected dots.

On the other end of the spectrum, for instance, my sister has the same issue and her doc in Arizona won't prescribe for her. She needs to go look for another. (My mother has it, too. It's genetic for the women in my family.)

My advice: write down all this great advice on this thread, regarding synthroid and Armour meds, & new "normal" thyroid ranges, & ask questions of your doctor. He'll check your levels, do a baseline ultrasound or scan probably, and at least you will see where you are on it. If you have an issue & your doctor's not proactive, find one who is.

But, if you're leaning towards seeing an ENT, my male ENT at Brookwood had his thyroid removed (oddly enough, his thyroid was keeping them from getting pregnant; they were able to have children after removal). So he's definitely "up" on it. Dr. Billy Cornay/Brookwood Hospital. He might suggest an endocrinologist to you that he went to.

i see an ent on tuesday, i imagine its to late to try to change appointments now. who is your dr at st. v east?