[vanillasky]

in reply to: Stress and Graves’ #1177089

Hey Graves’Guy! glad to see you post. how are you?

Yes, looks like it’s unamimous. Stress is indeed a factor

[vanillasky]

in reply to: Ophthalmologist appt. #1177058

I’m so happy for you, Diane! isn’t it great news? I remember thinking “well, that’s one thing I’m not worried about right now.” And we just keep watching. Stay on top of it.

Best wishes
Karen:)

[vanillasky]

in reply to: 6 days post TT- menstruation/pregnancy question #1177062

I think that’s a stupid thing to say to someone. Is she a doctor? Geez! People make me mad!

I don’t see any relevance to that statement AT ALL. Ignore her.

[vanillasky]

in reply to: Ophthalmologist appt. #1177056

When I got diagnosed with Graves’, I went within 2 months to a great eye doctor that was well versed in TED. He went through regular tests. There was nothing different, but he concluded, I do not have (at this point) thyroid eye disease. He said he could tell by all the tests he did. Put me through the wringer! LOL! Some of it was uncomfortable, but he was great and very thorough.

I would just make sure he knows about Graves’ and how it affects the eyes. You should be set to go!

[vanillasky]

in reply to: Is this a thyroid problem or menopause? Opinions please #1177028

Thankx, Beanie. The hot flashes you describe are just what I experience MOST of the time. I time them. They last anywhere from 1 to 4 minutes. I feel an uneasy “aura” before I get them. Sometimes it’s just a feeling of being sick, nauseated, and nervous. And then I’ll say “here it comes!” And it usually works its way up from my waistline, like you say, the face getting the worst of it. My pours open up and I swear terrible under the arms. Even my hands sweat. But these come and go, although very uncomfortable especially when they happen about 5 per hour.

When I have been hyperthyroid, it felt like an ongoing fever to me. I would have to change my clothes. I was soaked.

Right now, my TSH is 2.4 and everything is in normal range. My doctor took me off Tapazole.

But I am getting the chills. I am not sick. I just don’t get it. It’s a broken thermostat I think and a combination of a messed up thyroid and menopause. I remember Cybil Shepard being interviewed and she said that her hot flashes got worse when she drank a cold glass of water. That’s exactly what happens to me. If my body gets chilled, I get hot. Weird, I know:/

[vanillasky]

in reply to: Is this a thyroid problem or menopause? Opinions please #1177026

thanks Kimberly. I know this one is a complete mystery. I had asked my neurologist about this and he said: “Your body is sensitive to climate/weather changes so it can’t adjust.” Not sure if he answered the question or not, but this is one to add to the list for Cleveland on March 20th.

Thank you!

Karen

[vanillasky]

in reply to: wife of graves disease #1176532

I’m so sorry you have so much pain going on. Believe me,I have struggled with this monster for 15 years and it isn’t over yet. I have just been diagnosed the same month. Now I have to go back to the doctor next March 20th to see what they plan to do with me…

It is horrible. Please know you may feel all alone but you aren’t. We all have it and we are all here. Rant and rave all you want. I’m here right now for that purpose I had a rotten day, but I’m always here for help and support when I can. Everybody on here helps me.

Karen

[vanillasky]

in reply to: Hyper to hypo and haven’t had treatment yet? #1177005

Although this may seem uncommon to doctors, it is not uncommon to patients such as myself.

Reading your post, I thought I would give you some insight as to what happens between Hashitmotos Thyroiditis (which I was mis-diagnosed with for years) and then Graves’ Disease, which I definitely have right now.

With Hashimotos, one can start out hyper and then the thyroid will dump all excess thyroid hormone into the bloodstream. This can make you very sick. I have gone through this many, many times in the past 15 years. And the endo said I had Hashimotos/Hashitoxicosis, which is the part where you go hyper (Hashitoxicosis). Most of the time, my thyroid was slightly hyp0 or borderline. They thought it was Hashimotos. I was told my thyroid would “die” and I would be on replacement hormone the rest of my living days. Not so!

After several months of hyper, sometimes lying in bed sweating, heart palpitations, anger, nervousness, hair loss and just feeling like ending it all, I would then begin to feel better. The heat I was feeling (like a fever) although my body temp is love (97.1) at all times, I was BURNING UP. Try burning up in the summer time. It’s enough to self-combust. Everything triggers it and at times, it is like having a fever although there is no fever.

I thought I had something very seriously wrong with me, Cancer came to mind many times. But the minute I got to the lab and saw a TSH of about 14.0, I knew I was hyp0. Dumb doctor couldn’t figure it out so he gave me levothyroxine. I would take this and go HYPER!!!!! It usually would take about one month or so. He would poo-poo my symptoms and tell me it was all in my head, but no,I felt hyper again. Weight loss was common at that time. I weigh normally about 93 pounds and I would weigh about 89 and going down no matter what I ate. It was terrifying to see myself just disappear.

The only medicine he gave me was a beta blocker for my erratic heart beat and claimed Tapazole or PTu would not work. He never even tried it.

Once hypo I felt so much better. Palpitations were gone, heat was gone, hair was still falling out, I began to gain back the weight until the next bout with this horrible, rotten disease. It is enough to crack.

Some doctors think symptoms cross over from hypo to hyper and in my personal opinion, I feel it does. Nothing is set in stone. You could be hypo and still have palps. It takes awhile for the body to recoup. And some people with Graves’ can become overweight too. I know a woman that went blind and they couldn’t figure it out until she was diagnosed with Graves.’

Karen

[vanillasky]

in reply to: I’m back and feeling better #1176960

Wow! I am reading this and am over-whelmed by the opinions of different doctors!

I had the Chief of Endocrinology tell me the TSH is inconclusive! LOL~ As I wrote before, he told me always to watch FT4 and it’s conversion to FT3 and that’s really where my thyroid is at. He said TSH can wax and wane, not accurate!

But I guess all these doctors have different versions. Oh well………. Maybe this is why some of us always feel like crap?

[vanillasky]

in reply to: Levothyroxine issues? #1176964

Hi Diane! Welcome to our support group.

From personal experience, I can tell you that when I’ve been hyp0, I was given generic Levothyroxine and had much complications with it, mainly going hyper very quickly.

I was told that these pills come from various manufacturers and seeing they are generic, the could be either less potent or more potent that Synthroid. When I am going now, the doctors at Cleveland Clinic insist on Synthroid and that only as replacement therapy. Reason being: they feel that you get a constant level of medication that is the true dosage. They only switch to Levothyroxine (generic) if a patient is allergic to the dye in the pills. As you know, Synthroid comes in different colors so sometimes people are allergic to the dyes, however, in most case they are not.

Just a shot but it could be the generic pills you are taking. I’d ask your doctor and see what he says.

Hope this is alittle food for thought and once again, WELCOME!

Karen

[vanillasky]

in reply to: I’m back and feeling better #1176954

For what it’s worth, at Cleveland Clinic where my 2 doctors are, they seem to think that the TSH is inconclusive.

They feel that the FT4 is much more important than TSH. Why, I don’t know. They told me to pay more attention to that because that’s what is in the blood stream. Not sure why they are still using TSH. The ranges are different in every lab I go to. Very confusing.

[vanillasky]

in reply to: I’m back and feeling better #1176951

Hi Amy, glad to hear you are feeling better, but what you have written makes me think of myself re: Hashimotos.

I have been swinging from hyper to hypo for 15 years. And for 15 years, I was told “Hashimotos/Hashitoxicosis.” It turned out to be baloney because the idiot endo I was seeing NEVER checked the TSI. My TPO is also elevated but in no way comparison to the TSI.

I think it’s probably considered (not sure if it is) for us Graves’ patients to have an elevated slight TPO. Don’t remember my numbers but they weren’t all that alarming. However, my TSI? that’s another story! 800!!!!!!!!!!!!!

So it’s Graves’. Having the hyper symptoms and undetectable TSH for about 3 months at a time, Weight loss, (I was down to 89 pounds and am 5’4″) and tremors, sweating, intensive hot feeling like I had a fever, but would take my temperature and it was 97.1! So then the thyroid, I suppose would dump all it’s hormone into the blood stream. After that, I’d get a TSH of about 14.0 and then he’d put me on Synthroid. I’d take that awhile, then go hyper again! It’s enough to just throw in the towel. I felt lousy ALL the time.

The weight would return, tired, very tired, dry skin, constipation, hair loss, you name it. At one point, I thought I was going bald!

So that’s what happened to me. Personally, I think if you have Hashimotos(and I know people who do) they stay hyp0. They take the Synthroid, but when it goes both ways up and down, it’s Graves’ if the antibodies are present and elevated.

Just my two centavos.

Hope you keep feeling better!

Karen

[vanillasky]

in reply to: How do you cope with being on the knife edge? #1176943

I wish I could tell you how to cope, I am pretty much dealing with just feeling lousy about 98 percent of the time. All I keep doing is praying ( I have a strong belief in God) and I have obtained some self-help books that help me know myself and realize that a lot of it is attitude.

I guess what I am trying to say is to Believe that you will over-come this and get better.

Don’t ever feel bad about yourself for outbursts at rude people. I have it all the time. I swear like a trucker! LOL! And I suppose it’s not very lady-like, it is just downright vulgar, but you know what? I don’t care! LOL!

We have to become selfish in my opinion. This is OUR time now to take care of ourselves and pamper ourselves. This disease isn’t just a case of acne we go to the dermatologist for. This disease is a lot like luggage. It seems to be there forever and goes with us no matter where we go.

I ask God a lot “why me?” but then I just read a story in the newspaper this morning about a 16 month old child that died. Now, that makes me feel very guilty about myself. I am still alive although I have Graves’ and menopause and am going through Hell with hot flashes, palpitations, and sweating. They make me tired. So tired sometimes I can’t get out of bed. I feel like a pin cushion. Doctors want labs once every 4 weeks. It sucks!

I cry a lot too. I think it’s a cleansing of the soul. If it makes you feel better (it helps me) CRY!

None of this helps very much but just want you to know you are not alone and we are all here. Rant and rave. I do. And the people here never let me down with their great words and encouragement.

Karen

[vanillasky]

in reply to: Are We Contagious freaks? #1176929

@Kimberly! LOL! “Graves” doesn’t sound too good, does it?

Too bad his name wasn’t Smith or Jones.

[vanillasky]

in reply to: My First Post & Deciding on Treatment #1176934

Hi Kim and welcome to our group!

.
I was diagnosed October, 2012. I just stopped Tapazole this month. My levels are normal now and they came up quite quickly and I’m in normal range. Doctor is watching levels. I have to go to the blood lab each month for TSH, FT4, FT3. And did he tell you what your antibody count is? Mine is TSI 800

So you might want to see another endo, it’s up to you. Liver damage I was told can happen, but they don’t seem really concerned about it.

Karen

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