News & why I've been MIA.

[rkayw]

I haven't been on here in a while because we started working on our house remodel. Then I got sick. Dizzy, short of breath, so very tired, palpitations, losing weight fast, couldn't sleep, and other symptoms. I couldn't walk to the restroom without being out of breath and exhausted, & would have to sit down & rest 1/2 way thru doing dishes, & taking me all day long to cook one meal because I had no energy or stamina...none, ALL not at all like me.

I am not one to go to a doctor if I can avoid it and take care of whatever with over the counter meds. But I couldn't take it anymore. I finally gave up and went to my PCP. First test she did was a blood oxygen level, it was 74. She ordered me on oxygen 24/7, and several inhalers. She did blood tests of course to check other things.

Results of initial blood tests revealed I am Hyperthyroid, & my Calcium is also high. The blood test thyroid levels were very high so that became priority. She then ordered a thyroid scan with uptake and a heart echo. The thyroid scan test my uptake was 92.5% (normal is 30%).

Confirmed...I have dangerously high thyroid levels, my heart rate is going nuts, hand tremors, hair falling out.

I have been diagnosed with Hyperthyroidism Graves Disease. Graves disease is a autoimmune disease that attacks the thyroid. I am now under the care of a Endocrinologist, Cardiologist, and Ophthalmologist. Endo for the thyroid, Cardo because my heart rate spiked at 248 one day and this disease can damage the heart, Optho because the Graves Disease part of it can attack the eyes with whats commonly termed as Thyroid Eye Disease.

I am also seeing a Pulmonary doctor because they found thru the Heart Echo test that I also have Moderate Pulmonary Hypertension. I have COPD and Thyroid Disease which they seem to think caused the PH. I'll have to have more tests done for the PH later.

I am on bed rest, no strenuous activity, avoid heat (real funny doc... I live in Texas! thank goodness it is wintertime right now), avoid stress, home oxygen 24/7, and bunch of meds including a beta blocker to help control my high heart rate and hand tremors. Before the beta blocker my resting heart rate was going up to 140, with the one spike of 200+.

The immediate goal is to get my thyroid levels down as fast as possible and try to avoid a Thyroid Storm. There are three treatment options; antithyroid meds & beta blockers, Radioactive Iodine (RAI) to kill the thyroid gland, or surgery to remove it. The RAI my Endo says she can't think about right now because my levels are dangerously high and must come down before she can attempt that. If she did it now it could cause the high amt of thyroid hormones to "dump" into my body and could throw me into a Thyroid Storm, which can be fatal. I agree, lets not do that right now then.

My thyroid gland is enlarged and affecting my vocal cords, I sound like I have a bad case of laryngitis. They won't say if my vocal cords will be permanently like this & damaged or not, too early to determine. The third option of surgery to remove the thyroid gland isn't an option right now because it is too enlarged.

The house remodel has been stopped (for now). I can't do anything to help Chris (my hubby), and I don't need the construction dust agitating my lungs, nor the noise. And too, we are scared to use the money right now worried about what might come next with my health. I haven't cooked a thing in weeks. Chris is very supportive & taking very good care of me & doing everything on top of his demanding job. He brings something home to eat for dinner, or cooks us up something quick. I soooo miss cooking, so ready to sling some flour up in here again! I go back to see my Cardiologist for 24hr holter monitor tests results tomorrow.

2012 isn't looking like a good year so far. The year is still early though, I'm trying to keep a positive attitude that my medical team will get all of this licked and I will be back to my old self again soon.

Sorry for the long post. I miss everyone, and wanted to stop in to say hello. I'll try to stop by as often as I can.

 

[chimney55]

Sorry to hear about your medical problems, Rena! I was wondering what happened to you. Be careful with the thyroid. My sister was diagnosed with hypothyroidism and put on meds. Unfortunately, she wasn't actually hypothryoid. She has something called Hashimoto's disease---her thryoid levels fluctuate greatly! She's had 3 "thyroid storms" since November! (hospitalized all 3 times). Right now, they are saying "ha....oxicosis". They don't want to "kill" the thyroid just yet because of her level that her adrenaline gland is functioning. Coincidence? She lives in Texas as well.

 

[dotma]

Wow, so sorry to hear of your medical problems. Hope your issues get worked out soon!

 

[rkayw]

Oh my. I hope your sister gets better very soon. I think not sure that Hashsimoto is the hyPO (low thyroid levels) side of autoimmune disease? I have the opposite... hyPer (high thyroid levels) Graves Disease. It's is a very debilitating illness either way. Thyroid storms are very very dangerous. Glad she survived all 3. That's scary!

Hypo is more common then Hyper I think. Hyper makes your entire body kick into overdrive. I never realized that your thyroid literally controls your entire body functions, or that it could make you sooooo sick.

My prayers are with your sister! Hope her medical team can get her thyroid levels regulated very soon & she will feel better.

Sorry to hear about your medical problems, Rena! I was wondering what happened to you. Be careful with the thyroid. My sister was diagnosed with hypothyroidism and put on meds. Unfortunately, she wasn't actually hypothryoid. She has something called Hashimoto's disease---her thryoid levels fluctuate greatly! She's had 3 "thyroid storms" since November! (hospitalized all 3 times). Right now, they are saying "ha....oxicosis". They don't want to "kill" the thyroid just yet because of her level that her adrenaline gland is functioning. Coincidence? She lives in Texas as well.

 

[sandyk]

My beloved cat Sadie was diagnosed with Grave's Disease 2 weeks ago. Her thyroid is 4 times more than the normal. She is now on meds and going back for blood work in 4 more weeks. Weird that I never heard of Graves before and now in a couple weeks, I have seen it twice...one in my cat and now you. Strange!

Good luck with your treatment.

 

[rkayw]

Hope your Sadie gets better real soon.

 

[chimney55]

I'm learning more about Hashimoto's disease lately. Both of my sisters and one of my nieces have been diagnosed with it. Many people think that it's just hyPOthyroidism. However, it fluctuates. Since they've started checking my levels, I've been both slightly hyPO, and slightly hyPER. My sister got put on meds when she had her levels checked and then went into hyPER mode, thus the storm. It's also an auto-immune disease and it just depends on when the anti-bodies kick in as to whether someone is hyPER or hyPO. Eventually, the body will try to "kill" the thyroid and they will become hypothroid. My doc is watching my levels of hormones and antibodies so that we don't get an awful surprise.

Oh my. I hope your sister gets better very soon. I think not sure that Hashsimoto is the hyPO (low thyroid levels) side of autoimmune disease? I have the opposite... hyPer (high thyroid levels) Graves Disease. It's is a very debilitating illness either way. Thyroid storms are very very dangerous. Glad she survived all 3. That's scary!

Hypo is more common then Hyper I think. Hyper makes your entire body kick into overdrive. I never realized that your thyroid literally controls your entire body functions, or that it could make you sooooo sick.

My prayers are with your sister! Hope her medical team can get her thyroid levels regulated very soon & she will feel better.

 

[rkayw]

Glad to hear they are keeping an eye on yours. I dreaded having to call my 3 kids and tell them they need to start having theirs checked. Very strange disease. My endo seems to think it will be a long while before I have any danger of flipping to hypo since my levels are so high. She's increased my meds once, and says she will keep on increasing it until my levels start coming down to her liking.

My PCP that originally found the thyroid high said it was not Graves just plain ole hyperT, but my Endo says oh no honey...you definitely have both elevated thyroid hormones and the antibodies working against you telling my thyroid gland that I don't have enough causing it to over produce.

At any rate...some say being hypo is better than hyper. IDK. I would much rather for it to just be normal and that they find a cure for this altogether.

 

[rkayw]

Chimney, what happened when your sister had her Storms? I mean how did she know to go to the ER?
I think the possibility of having Storms scares me the most in all of this.

 

[chimney55]

Chimney, what happened when your sister had her Storms? I mean how did she know to go to the ER?
I think the possibility of having Storms scares me the most in all of this.

The first storm that she had happened while she was in the hospital. She thought that she had some kind of virus (and possibly did). But on her first night there, all of her systems started going "wonky". Her temp would spike and drop, her blood pressure was the same way. She also started going into cardiac failure. They had to bring a crash cart in. Fortunately, my niece was there visiting when it happened and alerted them to the possibility of a thyroid storm (she had already experienced one). Once they took my sister off of the thyroid meds, she started getting better. I don't know what has caused the 2 more recent ones, but I get them impression that she recognizes the symptoms of her heart rate and body temp going up and down. About a month ago, she gained 13 lbs in 2 weeks (hypo phase). Then she lost 9 lbs in 2 days (hyper phase)

 

[zbasspro]

Hi Rena, sorry to hear about all your problems We've sure been missing you around here and will keep you in our prayers. I know Tara has been dealing with heart and thyroid problems too If there's ever anything we can do please don't hesitate to ask.

 

[rkayw]

Thank you Bob. I am very blessed having you & Missy (and my Hidey Hole friends) on my side lifting me up with your prayers.

 

[ITPython]

I am very sorry to hear this, these kinds of things are never fun. I really hope you can recover or at least mostly recover!

But not to be selfish or anything like that, but the first thing that popped into my head when I read the thread was "Does/did ecig vaping have anything to do with this?" There is still a lot of unknowns right now about ecigs and the equipment used to vape (Chinese and toxic materials in their products go hand-in-hand), and whether or not inhaling artificial flavors/colors is inherently bad or horrible for us to do on a regular basis (pretty sure its bad ingested, so inhaling must be worse).

I know this must sound terribly insensitive, but I cant help thinking about these things.

 

[rkayw]

Your not the first to think/ask those questions, and won't be the last.

Had my Nuclear Stress Test today. fun fun. (sarcasm).
I get both, new Endo lab results and results from my cardiologist, next week. Hurry up & wait commences...again.
In the meantime, I'm still on bed rest but doing ok considering. Stir crazy as H.E.double hockey sticks, but ok. Thank goodness for remote controls, and laptops.

 

[yssiM]

Rena, Blessings to you sweet lady. Keep your spirits up, and kick this thing right in it's backside! My thoughts and prayers are with you and your loved ones.
Hugs & ♥ ~ Missy

 

[zbasspro]

Hope things are improving Rena. Tara has some serious test scheduled for Weds on her heart. I'm not sure what it is but I know she's scared. Darn, we're too young for this crap!!!

 

[rkayw]

Hi all. Stopped in for a min, had to shoot off a quick msg to someone about ordering some carto's asap for my tanks, silly me let myself get down to my last one and it's gurgling about to quit on me I think.

Thought I'd stop in and say hi. I'm still kickin, just not online much. Still very sick but hanging in there. One day at a time.

Hope everyone is ok and having a great year.

Keep my hidey hole stump warm for me.

 

[ambeck22]

You poor thing! Are they going to work on shrinking your thyroid or give you antithyroid meds in the meantime? There's a wonderful surgeon in GA I work for who does extremely difficult surgeries, i.e. thyroidectomies, cholecystectomies, difficult hernia surgeries, and the like. He loves a challenge, needless to say. He takes the cases where the patient can't swallow or can hardly breathe because of thyroid size and has a high success rate. The downside is being on thyroid medication for life (like Armour Thyroid) and having routine thyroid studies performed by your PCP, not the surgeon, but much better than the alternative. My thoughts are with you.

 

[zbasspro]

Hi all. Stopped in for a min, had to shoot off a quick msg to someone about ordering some carto's asap for my tanks, silly me let myself get down to my last one and it's gurgling about to quit on me I think.

Thought I'd stop in and say hi. I'm still kickin, just not online much. Still very sick but hanging in there. One day at a time.

Hope everyone is ok and having a great year.

Keep my hidey hole stump warm for me.

Keeping the stump warm and sending prayers your way LMK if you need some cartos and what kind, we may have a few we can get you out right away if you need them.

 

[rkayw]

Hiya Hidey Holers. Just ck'in in. I'm still alive & kickin....some days are great others...eh not great at all.

Between this mean bish thyroid disease I have that they still do not have stabilized, and 2 series of injections in my spine to avoid back surgery...you could definitely say 2012 has been like a mac truck hit home here.

Hope everyone is doing well. Miss you guys!