[wilson68944]

in reply to: Graves and now period of a fib #1183024

Oh my god. I think I have this. I never looked into and for years just called it palpitations but after looking it up I think I have a fib and have had it for years. It feels like my heart stops and starts and pounds so hard it shakes my whole body. If I am walking or climbing the steps I feel like I’m going to pass out and it makes me very dizzy. It takes sometimes 20 minutes for it to stop. How can they officially diagnose something that only happens randomly?

[wilson68944]

in reply to: Lord I need help #1183013

Jenn,

First of all, I live relatively close by in the southern Philadelphia suburbs, Delco. So that’s cool! I agree with what everyone said above me that this is totally normal and you’re not raving mad. It happens to me still even 5 years in on medicine. Not nearly as much and you will see a huge improvement when the medicine kicks in. I remember when I first started my medicine they told me it takes several weeks to “work” and I almost felt like why bother? I had lived hyper for so many years before being diagnosed that I didn’t want to wait a single day longer, let alone several weeks. I can give you a bit of hope by saying you’ll feel substantially better on that dose and in a much shorter time than 16 weeks. I’m not a doctor but from experience I’d say within a month you’ll notice a large improvement. Whatever you decide, I wouldn’t rush into any permanent treatment like RAI or Surgery right away. This is coming from someone who just had RAI recently, too! I waited 5 years on Methimazole and tried to go in remission then tried to just live stable indefinitely on the medicine but for me it just wasn’t going to happen long term. That said I wish you all the luck and I hate to say this because it cliché and it’s annoying to hear the way you’re feeling right now but it does get better I promise you will feel good once you stabilize!

[wilson68944]

in reply to: RAI Appears to Have Been Successful Within 2 Months! #1183008

Thanks so much for the supportive responses guys! Kimberly, I am like you in so far as my body reacts quickly to changes in medicine, even miniscule with Methimazole. I hope that I don’t swing hyper again but hopefully while waiting to “detox” my system from Methimazole in order to draw new labs to get a more accurate look at my FT4, FT3, and TSH without anti-thyroid drugs in my system I don’t continue to get more hypo. Because I have to wait another 5 weeks to see my doctor again with the new lab results before I can be placed on synthroid or any other medicine.

You guys are the best! I am a member on another Thyroid forum that I won’t mention by name that seems to push a more holistic non-RAI approach and they were not supportive but rather alarmist telling me I needed to get on synthroid immediately or risk coma or heart failure because my labs were “horrible”. I tried to explain that I just stopped taking Methimazole that same day so my labs are more hypo inflated than they probably would be if I hadn’t resumed Methimazole after RAI. I explained that they would probably normalize a bit but I’m sure I’ll still be hypo. Well, they took the wind out of my sails and that’s not nice. I see them constantly pushing their views on others unlike this forum and therefore your responses are refreshing.

[wilson68944]

in reply to: Anyone suffer Generalized Anxiety or OCD? #1182929

PolishTym wrote:

Wilson, I bought an insane number of hats when my hair was coming out and thinning. During that time I used shampoo and style product that were each a thickener too, both made by Every Man Jack. However, there should be other brands out there.

It has been three years since my thyroid surgery, and for the last few years my stylist has kept thinning my hair because she says it is too thick. So keep the faith.

Tym, you’ve made me feel better than you know. Now I have one less thing to worry about

[wilson68944]

in reply to: Loss of appetite after RAI? #1182841

You’re not being contrarian at all! When I am hyper I have a weird combo of a decreased appetite, particularly in comparison to when I’m hyper, but also not losing weight even though I’m not eating. Therefore, I can tell that if I were to eat the same way I eat when I’m hyper I would gain a proper amount of weight.

Typically hallmark symptoms of hyperthyroidism is large appetite yet minimal weight gain and hypothyroidism is decreased appetite. However, in cases like yours where you retain the healthy appetite but gain the troublesome weight losing issues of hypothyroidism you are in for a weight battle. Everybody is different always and I’m sorry for simplifying it like I did. I’ve always been able to suppress my appetite easier than friends and family so I guess that’s why it is so easy for me to maintain my weight. Considering how little I eat when I’m hypo but how I still don’t shed weight shows me that your experiences are very real.

Side note, it’s 12am in the northeast and I have yet to have anything to eat all day. I’m going to eat the dinner that has been left out for me and go to bed. Hey, I’m not saying I have the healthiest habits either

[wilson68944]

in reply to: New Member! First Post About My Struggle With Severe Graves’ #1182920

Hi Kimberly!

Thank you for taking the time to read my long post about my journey! I can tell you actually read the whole thing and I really appreciate it. I didn’t think anyone would since it turned out to be so long when I finished. I tried to edit it down but I really thought what I wrote was important in explaining my story and how I got to where I am today.

I’m glad to hear you have heard of this method of RAI dosing before. On face value it makes sense. However, when your doctor tells you for months they are going to give you the largest dose the Nuclear Medicine doctor will allow and even suggested a specific hospital to go to have it done because they typically dose higher, and then turn around, do a 180 and give me a low dose through me off a bit.

My first Endo said she was refusing now because I would need possibly as many as 3 doses of RAI and she said that could expose me to cancer possibly down the road when I’m older. If she had been consistent about that it would have been fine but she really changed her tune over one really bad lab and my history in general.

I’m still young but in my brief but thorough experience with doctors of all specialties, I’ve found inconsistency from one doctor to the next to be the biggest frustration. When you’re young you think doctors are superhuman geniuses functioning on a higher level. As you mature and have more experiences with them you begin to come to the uneasy realization that while they are highly educated they are just people like us that are “winging it” and guessing what will be the best course at the end of the day.

I will check out AZ guy! Thanks again!!

[wilson68944]

in reply to: Loss of appetite after RAI? #1182839

JMKarlen, although I’m only two month in from RAI myself, I’ve been hypothyroid from anti-thyroid drugs many times over the past decade for extended periods and I can tell you from experience I never gained weight. I’m 6’2″ and currently I weigh 178lbs. You just have to watch what you eat. It’s really that simple.

[wilson68944]

in reply to: Loss of appetite after RAI? #1182838

I thought I was the only one! This is happening to me, too. I recently had RAI after a long bout with Graves’ for a decade. I was on Methimazole all those years. I just had RAI on 6/19 and I am never hungry. During the two weeks surrounding RAI I was off my Methimazole and I was hungry all the time. So I think it has to do with being or in my case becoming Hypothyroid– at least in my experience it has. I haven’t gotten my second set of labs done yet. I will at the 2 month mark in about a week, but I’m sure from the loss of appetite I’m beginning to swing Hypo. My last labs I was still Euthyroid or more specifically subclinical hyperthyroid. Meaning my TSH was 0.04 but my Free T4 was 1.4. However, I’m still on a daily dose of 30mgs of Methimazole as well which I resumed 2 days after RAI.

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