[vanillasky]

in reply to: Vitamin D and remission rates #1178923

How do you raise vitamin D level if you don’t go out in the sun? Mine is 7. They do nothing about it. I was told it should be 30 or 40.

I have heat intolerance so I can’t stand the sun. Plus, I use Retina-A on my face for wrinkles, wear sunscreen Spf 30 or 50 at all times.

I tried a sub-lingual Vitamin D from the health food store and it made me so nauseated, I couldn’t tolerate it.

Cannot take the little “jelly” pills because I throw up.

Is there another form of Vitamin D?

Karen

[vanillasky]

in reply to: Does TT cure Graves? #1178985

I have heard so many different stories so I don’t know what to think!

some say Lupus is a concern because the antibodies attack other parts of the immune system and diabetes too. Maybe it’s just the luck of the draw. Remember Forrest Gump? “Life is like a box of chocolates, you never know what you’re gonna get.”

Karen

[vanillasky]

in reply to: Does TT cure Graves? #1178980

I don’t think a TT cures Graves’. I think Graves’ is like luggage, you keep it forever.

My endo told me the antibodies last in the blood for about 10 years after RAI or TT. Is he right? OMG!

[vanillasky]

in reply to: How do you stay calm? #1178957

Aw, thank you, Rae. You’re very kind. Funny thing: a lot of people tell me I’m strong, but I don’t think I am.

Even my own mother thinks so! Yesterday wasn’t as bad as I thought. We got through it without my father pretty well. I bought him some red carnations and let them on his crypt. The masoleum people hate that, but it’s only once a year, I disturb the crypt, right? What’s alittle scotch tape?

I wrote father a note and talked awhile and then left. Told him to Rest in Peace. I had minimal tears. Maybe I’m becoming a tough cookie? LOL!

I have someone I met a few years ago. His name is Criss Angel. If you haven’t heard of him, he’s a magician in Las Vegas now doing a show at the Luxor. (see? I’m advertising for you, Christopher!) and he said “Whatever doesn’t kill you, makes you stronger.” that’s been a big influence on me aside from him and his kindness when we met. Talk about being tough! His father died of stomach cancer in his arms.
And he recently lost “Hammie” his cat. So in everyone’s life, some rain must fall.

thanks for your kind words. I’m hanging in there. Tranquilizers do help, though

[vanillasky]

in reply to: How do you stay calm? #1178955

Well…………..got my labs back today. I guess Graves’ is behaving itself. TSH is 2.64. FT4 is alittle low but no big deal. FT3 is pending (usual)

Got a call from the gynecologist. Pre-op Friday, have to see her Monday and surgery is next Friday. (yay) 😮

Excuse me while I go throw up. I am very very upset.

Karen:/

[vanillasky]

in reply to: adrenal thyroid connection #1178973

Wow.thanks Harpy. it is a bit complicated but I think I understand it.

I wake up 90 percent of the time with a hot flash. Sometimes it’s within a second, other times it takes a few minutes. I was told that adrenaline wakes up the body and that’s what causes the hot flash. Don’t know if this is true or not

the gynecologist I went to yesterday told me my hormones are definitely out of balance and that’s why estrogen supplementation does not work. But no one cares to figure out what to do to balance them. They are afraid of the cancer risk so they let me suffer. Especially now since I have postmenopausal bleeding and need surgery, they don’t want me on any hormones at all.

I am at witt’s end and dont’ know what to do. they have me on Chasteberry Vitex. But I have only taken it barely one week when they tell me it takes 3 months to kick in if it’s going to work.

I feel like it’s all tied in together and each doctor will give a different explanation. I also have nightmares and wake up shaking sometimes. then I find myself very hot as well. Sometimes I wake up with tremors. As the day goes on, I find myself relaxed more and more but the best time is at night when I actually feel “normal” as that can be. stressors don’t seem to exist at night but the mornings are Hell on wheels.

[vanillasky]

in reply to: adrenal thyroid connection #1178971

When I have asked about the connection between thyroid and adrenal glands, all I get is nothing.

I tried to explain to the endo I have now that when I get stressed out, I get very, very HOT!!. Is that a reaction to stress causing a hot flash? Or is that adrenaline?

He explained to me it was an adrenaline “dump.” In other words, you get upset, adrenaline is flooding your bloodstream and then the blood vessels dialate everywhere in the body, you get hot. Ever heard the term”Hot under the collar?” that’s exactly what it must mean, I think:rolleyes:

I never had this problem until the Graves’ thing started and the menopause thing started both at the same time, I think. Something can shock me (like a close call when someone almost smashes your car) and I’ll get so hot, I’m sweating and soaking wet. I get told this is a normal reaction, but mine is extremely severe so it takes a long time to cool off.

He explained this as an adrenaline dump. I told him I wanted it to stop and he said I was lucky this happened. Why? I asked him what “adrenal fatique” was and he said there is no such thing.

I really do not understand this whole thing. Cortisol is higher in the morning and lower at the end of the day. Could this explain the stress level of being upset more in the am than in the pm? If so, this would make sense to me because I am always more easy going in the night time.

How do you control the adrenaline supply from gushing into the bloodstream and dialating blood vessels and making a person so hot? It’s like a baby crying. Their faces get so red, I’m sure they feel hot, but they can’t tell us because they are too young to speak. So I really am puzzled, bewildered and confused by this whole concept of adrenaline and adrenal fatique.

Personally, I do believe there is some connection from Hashimotos, or Graves’ disease.

Karen

[vanillasky]

in reply to: doctor finally called – mass below thyroid #1178961

You will always have my support. Please let us know what’s going on. Please feel free to PM anytime.

I wish you the very best

Karen

[vanillasky]

in reply to: How do you stay calm? #1178949

thanks for all the suggestions and responses. I appreciate it.

@raspberry: they found my uterus is too thick. Yes, again. why does this keep happening to me? Just had this surgery alittle less than 2 years ago and now here we are again?

it should be 4.0 and it is 5.8. I have postmenopausal bleeding so they want to biopsy my uterus. I am beside myself. I went through this not that long ago so how do I have to cope with this again?

I am at this moment waiting for the doctor to call to schedule the surgery because I don’t know what else to do. Am bleeding more all the time.

In a little while, I figured I better go up to the blood lab because if I’m hyper, as you know, no surgery can be performed so I better go check my TSH.

Trying to tackle one thing at a time. After that we are going to cemetery because it’s my father’s birthday. I originally had planned a party for him, but now I just have to go visit the masoleum. This is a sad day for me. Thank you all for being so kind and supportive.

xxoxox
Karen

[vanillasky]

in reply to: Can stress set you back? #1178898

In my personal opinion, I would say “yes.”

My last major flare up was last summer when my Tsh dropped rapidly from 2.39 to nearly 0.0l when my husband was diagnosed with renal failure. He spent awhile in the hospital and had to have surgery. Things were touch and go there for awhile and I began to feel worse. At first I thought it was the summer heat, but it was my dropping TSH that had me losing weight, rapid heart and super bad heat intolerance.

It took months for my TSH to go normal range again. that’s how my Graves’ was discovered.

[vanillasky]

in reply to: Would you take Vitex? #1178893

thanks Nancy. that’s exactly what I plan to do. I am abit afraid of this vitex stuff

[vanillasky]

in reply to: Anti inflammatory diet #1178783

Here is the inflammatory diet that the nice ladies from Cleveland Clinic’s Integrative Medicine gave me: (notice I’m being sarcastic about “nice”)

anyway, here goes:

Eliminating meat, dairy products, butter and even margarine because of their pro-inflammatory fats (saturated and trans) most processed foods are also high in these fats. Protein sources should be fish, nuts, seeds and beans. Eggs from high omega-fed hen are good. (eggland’s Best or Land O Lakes)

Increase sources of Omega-3 fatty acids in the diet which include flax seed, walmuts, cold water fish *see chart* and fish oil supplemnts 2,000-6,000 miligrams per day must be refrigerated in liquid form GNc triple Strength Or Lovaza are recommended.

Preferred: salmon, wild salmon, farmed anchovy Herring Atlantic Mackerel Atlantic Sardines and trout

Good: Tilefish, Atlantic Mussels, Striped bass, Oysters, Fish burger fast food, Pompano, Pollock, Alaskan Halibut Crab, Scallops, Snapper, Clams, Tuna fish

Neutral: fish sticks, frozen catfish, farmed flounder haddock cod mahimahi lobster shrimp tilapia Skin less chicken and turkey breast

*We had talked before about iodine in the diet and doesn’t crab, salmon and tuna fish contain iodine not good for Graves’ patients?

that’s why I don’t think this diet is very good and certainly not aimed at “us.” However, some parts of it seem to be good.

Karen

[vanillasky]

in reply to: abnormal CT scan – thyroid?? #1178886

@Talley, I am no doctor, but I would definitely look into this in depth. I read this and don’t like the way it sounds.

My father had thyroid cancer. all it took was one little nodule in the center of gland and it caused big, big problems for him. A total thyroidectomy and then they said it invaded his vocal chords.

PLEASE, PLEASE, PLEASE, see what is going on. No one wants to end up like poor Roger Ebert.

I don’t mean to scare you but when I read things like this, I am concerned!

Karen

[vanillasky]

in reply to: Six years to get an answer #1178882

Hello and welcome to Graves’ Land.

I completely understand your struggles with trying to prove you have Graves’ and that you are sick.

I went for 15 years with symptoms and saw a few endos. where I live there are only a handful and all they came up with at best was clinical depression, hashimotos, and more or less said I was “stressed out.”

I am 5’4′ and weigh about 95 and that is on Fat days. I have been as low as 89 pounds and told I had anorexia, which I always resented because I was burning up with heat, my heart was racing, my hair was thinning and I was so depressed, I tried to end it all 3x.

I compare the whole thing always to the film “rosemary’s Baby.” She was so sick with pain but no one believed her and she was carrying the demon child. That’s what we feel like. Why won’t they listen? Are they that stupid? they are supposed to be doctors. or maybe they haven’t heard “Graves’ Disease?” Tell them to take a look at the late, great Marty Feldman. that’s what a lot of us look like. He died at 48 of a heart attack. I wonder why. Hmmm? He had Graves’ so bad, his eyes were bulging and back then, they were almost as stupid as they are now.

Now for the good points: you don’t have to worry about how sick you feel because you know what’s wrong with you and begin to get help because now somebody is on YOUR side.

It took me 15 years and then 2 doctors found Graves’ in a week with the right testing.

Take care
Karen

[vanillasky]

in reply to: Cleveland Clinic’s Integrative Medicine (entertaining read) #1178771

just google “The James Randi Foundation.” His latest venture is a beef with accupuncture for Bell’s Palsy. Very interesting read and he is angry! LOL!

[Author]

Posts