[Darcy43]

in reply to: ~~ HypoT Symptoms ~~ #1173457

Good Morning Caro

Glad you are staying as positive as you can (and believe me, it is not easy) but you are not alone. We are all in this fight together. GD Nation…

Yes, I stopped feeling so bummed out when my t4 was lower (at first it was at 7.77 and I thought I would losing my mind). It takes time. I am not at marathon status but I am glad to be able to do the little things and walking is a step. Take babysteps. If you can walk for 5 minutes, then that is better than before so do not feel bad. It took a long time to diagnose GD and the recovery process in long also, but many do recover or are able to live with it.

hang in there and remember your friends care. Keep us posted. I am sure they will make the adjustment to locate your sweat spot. Welcome to Round II.

Darcy

[Darcy43]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173762

Kimberly I will definitely take that into consideration.

I guess with the soy it is controversial. I have read both – bad for hyper and hypo but I know you are much more well versed in research on this matter than I am so I trust you. I am still staying away from it however. Just a personal decision.

I do not want to be kicked out of the program, which is why I am doing everything to comply but it gets frustrating…

I am looking forward to the next set of labs…I do hope I see improvement, but yes I will keep taking my meds…begrudgingly…but I will keep up the treatment and keep yall posted.

Thanks again.

[Darcy43]

in reply to: Methimazole Side Effects? #1173811

Yes, get your labs checked and ask your doctor asap. One of the main caveats of Methimazole warning is “if you suffer from a sore throat seek medical attention.” This is because that *may* be a sign of infection due to the lowering of your WBC because of the mediation. I cannot believe your doctor flat out told you “no” that couldn’t be a cause for concern. Wow. Yes you have been on the meds for a while, but I didn’t start having side affects until 8 months in also.

Hopefully it is nothing serious, but do not ignore it. Get to the doctor and find out. You will be treating GD for a long time so you need to get use to paying attention to your body…

Good luck and this board is great.

[Darcy43]

in reply to: ~~ My new labs … what now?? Help ~~ #1173769

A definite change.

I am not a doc but it appears that the high dosage of Methimazole helped bring your TSH up quite a bit and lowered your FT4 a lot….they will probably lower your dosage, and wean you off because if not you might slip into HyPO if the numbers of TSH rise a lot and T4 gets really low. Adjustments will be made

How do you feel?

[Darcy43]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173760

That sounds great Caro.

I will check out your labs. If they are lowering your dosage, that means you are possibly leaving the hypER stage which is a good sign. Some of yoru symptoms should have subsided also.

Swimming is EXCELLENT. It is light on the joints, and it is all over toning. I have a inside pool in my complex and I have gone only a few times but I need to do more of it. I must have typed too fast because I do eat meat, just not red meat. I read somewhere that it aggravates graves disease. Prior to reading that, I stayed away from it because some of the red meats are high in fat and it is very hard for me to digest. I also started breaking out in hives…Lamb doesn’t bother me (considered red meat) so I eat it, but sparingly.

They have so many gluten free products and on the market now (I think are do you have Celiac also?) so you have a lot of options.

Yes soy is a no-no for GD patients. It aggravates the symptoms and I think it interfers with the medication (one of the Facillatators can correct me if I am wrong). I used to drink protien shakes (EAS low carb) for life all the time until I was diagnosed. Unfortunately, the main ingredient is soy. Now I stick with a boiled egg or two, in the morning. It does the trick.

Stay focused and positive and yes I watch my Yoga poses. I am in the lower impact stages (Vinysse (sp?). It gets you centered and toned but I don’t have to be an acrobat to do it lol. I also do Pilates. Ballet on the floor and it is really good. Moving nice and slow.

I wish you much success with your endo treatment. Keep us posted. It is a rollercoaster but you can hang on tight and ride it out. That’s what I’m doing. I didn’t have a choice when I was diagnosed but I do have a choice if I am going to let it run my life. One day at a time…

Hugs

Darcy

[Darcy43]

in reply to: ~~ HypoT Symptoms ~~ #1173454

Hi Caro

I didn’t officially become hyPO but I was close which was why my endo lowered my Methi dosage at that time. I was really cold (when I was hypeR I was super sweaty and hot all the time). I felt like I was dragging, even more tired when I was hypeR. My heart wasn’t beating a gazillion miles a minute thanks to the meds with beta blocker but I was getting super fat and my menstrual cycle was killer 7 days very heavy plus. And I was a crybaby…bigtime…watching pet food commercials made me cry, looking in the mirror, tears….jumping on the scale… wailing….lol. My endo said that was a sign I was “getting better.” I think what she meant was that I was out of the HypeR danger zone (your periods are much lighter and shorter) but it still sucked. After decreasing my doasage I was feeling a lot better, had more energy and now I am able to do a bit of Yoga and walking, etc. so that helps too. Waiting to reach euthyroid status one day…someday….

Good luck with your labs. Watching them is KEY. keep a records and keep us posted.

[Darcy43]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173758

Alexis you are so right. I did call back and speak with my endo directly and she regurtigated the same thing. I seriously think she is trying to strong arm me into RAI. It is the path of least resistance, but I just feel like she is rushing treatment. It hasn’t been 18 months yet. I know I have great insurance but goodness. But yes, according to my numbers it appears that I am getting better and I am starting to feel better. Seriously and I know this is only temporary… Believe me I would know hypeR symptoms if they started to come back, the Graves Rage, screaming, excessive sweating, shaking, tingling in fingers and even my legs would give out and I would just fall down…crazy. I haven’t has muscle cramps, my hair is not coming out any more and I am starting to feel …dare I whisper it…NORMAL/balanced and actually hopeful…wowzer. When I was on such a high dosage because it was necessary at the time it was pure hell…there has to be another solution, there always is. In six weeks I get more test so I will look at the numbers then and see. Yes the brushing is really good LOL seriously. My accuputurist used to use it on me and they sell them in Bed, bath and Beyond. It really does work, but I stopped using it when I moved back up north. when you put yourself last…you get GD LOL….

Caro, I am so sorry you are at 30mg and in the beginning I was at that dosage also. If you are still considered extremely hypeR you must be having an awful lot of symptoms so they are trying to find your sweet spot to control them. Good luck with your labs. I really hope you get better numbers this time around. I am sure your doc is doing everything possible to help. Yes it is a blessing to be on a lower dosage but I would love it even more not to have to take it at all…I know we can take it long term with decent results and success but it just doesn’t work well with my body and my endo knows this. She is on this “well we are getting close to the 18 month mark…let’s fish or cut bait” syndrome. I want conservative care, I take risks but this ish is kray kray and I still have to work my job. I am doing as much as I can to preserve my health even though it is hard. The yoga helps a ton with the mind and spirit because I had to stop running and that was just torture. I really do not lift weights yet, not strong enough, but I also walk and jump on the mini trampoline also. And I cannot stress the importance if vitamines and minerals (the right one that do not interfere with your meds). Yes I take a lot of protien (I practically live off chicken and fish, no red meat and no soy) and I eat a ton of veggies. I should look like a supermodel but the weight isn’t falling off..oh well…that is the least of my worries I guess. Hang in there.

I am trying to live with this stuff…but I am not giving up….

You guys are the best.

[Darcy43]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173755

And I am buying a skin brush…the stroking cannot hurt to keep me calm and release toxins..LOL…

I should brush my brain….I wanna say so many toxic words right now…..LOL

[Darcy43]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173749

Thanks Kimberly I totally agree.

In fact, based on what my endo said was my “normal range” I was almost in remission or euthryoid (sp?). I have no idea what caused the TSH to drop .02 pts but again my T3/T4 are great according to what my normal range should be and she told me this.

I, too thought 10 mg daily was a bit much and last time when she up the dosage I went almost HypO and then it was like whoa…..come down, adn the side affects were AWFUL, etc….I will call her but what I think I am also going to do, (and I don’t recommend anyone to do this), but I am going to take 1/2 of what she recomended. I want to see how I feel first. Methimazole is suppose to stop the over production of the thyroid hormones. And I know for a fact that my T4 came way down based on my taking the Methi, PLUS talking Selenium, Lemonbalm (which helps with hypER symptoms and is a great stress reducer – but I check with her first and she wasn’t opposed to me taking it – she didn’t like it, but she liked my numbers and they looked much better T4 from 7.77 to 1.86) and I will continue to take my vitamines (A-E), magnesium, calcium and biotin for my hair, along with evening prim rose to decrease it from coming out (again). and I will pray.

It is really doing well and I don’t want to relaspe. I have 6 weeks before the next test before she tries to force RAI on me. I will see what happens. I even feel really good right now. If nothing changes for the worse and my T3 and T4 remains normal, I will not increase the Methi….it is not good for me and I told her this. I have bad side affects and I am tired of my side hurting and the God awful periods – I feel like I am hemorraging and she said this is a side affect that the Methi is “working”.

Praying and going to yoga tonight.

Oh and i am totally giving up coffee…I dropped down to 1/2 a cup and started drinking green tea…now I am completely done with it. I am trying everything including the medicine…..Namaste

[Darcy43]

in reply to: About to get results…nurse pulled my chart but hesitated and said…ahhh let the doc read and call you back #1173753

OK I kept calling and DEMANDED to get results. Here they are

TSH back to 0.01 (saying curse words) in May it was 0.03
T4 is 1.86 (still good)
T3 (finally they checked it) is 161 – good also

Of course she wants me to now UP my methimazole. I was on 5 mg every other day, now she wants me to take 10mg every day and then retest in 6 weeks…

Dayum…I cannot stand taking that stuff. Welcome back hair falling out, weight gain, etc. I will follow doctor’s order but I really thought I was going to be weaned off of it.

I think she is pushing RAI who knows… if the T3 is normal and the T4 is also, that has to be good news right? I despise it when they measure the TSH as a defining factor for yours meds. We know it jumps around….uggghhhh. Thoughts?

[Darcy43]

in reply to: Help With Phobia #1173069

Hi Naisly and welcome

Your fears are justified. If you are angry with your doctors who seem a bit on the not-so-compassionate side, I understand that also. I think in med school they teach compassion but then tell them to throw it out the window at the first sign of fear LOL. I love the doctors/endos, etc. but yes it can be either intimidating or condescending. This board is a great source of support. No one is a physician but we have or had this awful disease so as “ginny pigs” we have been treated and can tell you first hand the results, affects, etc. It is a chess game, move forward, move backwards, move sideways…etc. until they find that sweet spot.

So with that being said, please please please seek medical help ASAP. thyroid storm can be fatal and you would not want that to happen. You think you feel bad now….

Keep seeking treaters of the mind also. The mind and body are connected without a doubt. See if you can get some sort of liquid anxiety medication if that will help. Even if it is something you can mix in water or juice for easier consumption. But yes, please seek help and keep doing your research for a good endo.

I wish you the best recovery and you are in my prayers…

Darcy

[Darcy43]

in reply to: Well, here goes! #1173472

Welcome.

I totally feel your pain and I too suffer from extreme anxiety. We call it Graves Rage at time…I thought I would harm a few folks before I began treatment, including my doctors who pooh pooh’d my anxiety as excessive worry and stress. I hate the thinning hair, the weight gain, the rapid heart beat, etc. I wish I had the answer as to why or how we are the chosen ones for this horrible disease, but alas, I haven’t a clue. I am just glad we are in the 21st century and there are various treatments, along with support boards, and specialist so we can get the physical and MENTAL help we need.

If my mind isn’t right, my body will follow. I cannot believe these scientist (docs) do not believe in the metaphysical connection. I trust their expertise but it is disheartening at times. I am glad we also have a ton of endos and surgeons to chose from also.

I will pray for your recovery.

[Darcy43]

in reply to: OK now what…RAI Seriously??? #1173311

No apologies needed gatorgirly. I am glad this post is prompting such dialogue. I am truly learning alot. I too had a very stressful job, divorce, family drama (i.e. the mother from hell), and just internalized everything. But I also was a runner, ate well, was really tiny and didn’t consume fatty foods. I believe that extreme stress *may*contribute or aggravate GD, which is why we are warned all the time to stay calm and stress free. Does it cause it? I have no idea, but then again, all cigarette smokers do not get lung cancer either…I think it is highly genetics, a bit lifestyle and then just a roll of the dice. And who knows what we ingest in our meats/dairy/processed crap, etc. We have been dealt funky hand of cards and have to strategize.

Which brings me to my decision: I haven’t decided yet. I took new labs last week so I should hear from my endo this week. She said she would call me ASAP if they were horrible results…I guess no news is good news. Still, even as Kimberly stated, it would be nice not to get pricked every 6 weeks, I hate needles…but then again, I am just really scared about the affects of RAI. It is a tough call. TT is not something I want to jump into either because I hate surgery. Having my appendix taken out was simple but I had that feeling…”If I die b4 I wake”…you know what I mean right before they put you under. I cleaned my house from top to bottom, re-wrote my will, etc…yep nerotic…

I will keep yall posted. thanks again for the feedback. I am feeling MUCH better than last week. Still scared, but must better.

I love this board.

[Darcy43]

in reply to: OK now what…RAI Seriously??? #1173305

thanks Harpy

I am taking my time and not being forced into a “one size fits all” decision. Although we are all made of flesh, bone and blood, we are different. What works for one may not work for another. All three treatments do have risk and I need to just chose the lesser of the evils if you will. Getting will is not something that I think is evil btw, but it just depends on the person and what they can live with.

I am glad there are so many success stories on all treatments, whether long term ATD, RAI and TT. I will continue to pray, research and communicate with my endo and most importantly STAY CALM and wait for my next two lab results. Whether we hit a homerun or strike out eventually we have to swing that bat, so I know I will have to make a decision soon.

I just want to make a fully informed one.

Thanks for all the encouraging responses EVERYONE.

[Darcy43]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173412

This is absolutely true.

Two years ago when I had bruising and extreme hair loss my OB/GYN ran a test and I was Vitamin D3 deficient, extremely…If only I had known to have my thyroid check..it would have saved me another year of the same symptoms (with a goiter and sore throat). That was my whisper that you are leaning towards hyPER and do something…again I had no idea. A year later, I am diagnosed with Graves…

Yes I believe it is an indicater. Bone loss/muscle wasting, etc. are symptoms and the V D3 deficiency is a good indicating that something may not be right. I was told I wasn’t getting enough sun (which is the only way to really get V-D3 (not from dairy). I thought this to be correct because while I lived in Florida I never had a deficiency. I moved up north, lack of sun and bingo.

Thanks for the information.

[Author]

Posts