[elf]

in reply to: I’m sorry me again but think I’m going crazy #1073120

With me, it was the other way around, my anger was directed at my hubby, not at the kids. However, with me being in the mood, it spilled over on the kids – barking at them.

All the while, I just knew what I needed to calm myself down, – a room for myself only, preferrably painted in light green or light lavender – clean, with minimum decor (you can visualise Japanese type of rooms) where I could meditate and let my thoughts run their course and die… Somehow I knew it would help, but I didn’t have a room for myself.

I am not sure I follow what your BIL proposes for you as treatment… But in any case, it’s something that you need to decide for yourself, out of all these sources – your Endo, your BIL, here, and you probably researched at lot by yourself.

One week is not too long of time, hopefully you won’t do anything drastic until then. When you feel something coming up, remove yourself – just close the door (say to your 4 year old that mommy will be back shortly) and secure the baby – and wait in there until it passes.

[elf]

in reply to: I’m sorry me again but think I’m going crazy #1073118

How would your BIL in Japan would treat you?

I came to view my thyroid as an "alien" that needed to be gone gone gone. Hopefully your TT will help you, but since it’s going to be Partial , it’s a 1-million pound question, right?

Yes people have kids after RAI – funny thing, I did RAI exactly with the thought in mind, – I wanted to have one more kid (regardless of my age), so I thought taking a known amount of thyroid hormone would be a better thing for that, rather than chasing the violent thyroid with drugs. In addition, I knew there could be a Graves flare-up in the post-partum period, and I could envision not only craziness in post-partum, but my eyes popping out, too. Nope, I didn’t want that.

I’m happy to be taking a small hormone pill every morning, and to know exactly how much it is, it’s not a big deal really. If I wanted, I could have a kid now, there’s no question about it.

Our kids can see much more than we think they do…with their skin, maybe… They are so much attuned to mommy, and it’s not good that they see instability, and abuse, and who knows what else. I think you need to take your health care in your own hands and demand what you think you need.. Because a childhood trauma may result in later, teenage problems and what not.

Big hug to you… people may not understand how we could be scared of ourselves… and scared of what we can do to others..

[elf]

in reply to: I’m sorry me again but think I’m going crazy #1073115

My kids are 4 and 5 too, so we need to think about curbing what we have, because they are learning and sponging.

You’ve had it for 4 years? Did you have RAI? As I said, RAI may be good for us whose Graves result in violence. Forget about following others trying to achieve remission. We’ll end up in jail before our remission. I can’t build myself up in that kind of anger anymore, 3 years after RAI – thanks goodness!!

I don’t think you are in menopause, but you can ask you Dr check for FSH, estrogen, and LH – three hormones that show if a woman is or close to menopause. My mother had it at 44, so I thought I would, too. I’m 45 and still going.

[elf]

in reply to: weight gain Pills Forever? #1073137

Your doctor is preparing you for RAI, I was taken off PTU 4 days before RAI, too.

Before you do that (RAI), educate yourself on this disease, otherwise you will end up with thousands of disgruntled people who feel they were led into RAI like cattle, while if they knew, they would prefer another treatment route.

(I had RAI, but it was my decision).

There are 3 treatments for Graves – medications, RAI, and thyroid surgery. Often, people feel that they would see if they could correct their thyroid with medications (PTU or Methimazole) and eventually achieve remission. It seems that you respond well to meds, so there shouldn’t be any rash into RAI. It’s better to save your thyroid, I think. But some people either don’t feel great on ATDs, or never achieve remission, so they choose RAI or TT.

Don’t let your Endo led you into RAI until you understand what exactly this disease is, and that you agree with RAI.

Research, research. Google for Graves disease.

The weight gain – it should be the last on the list of priorities, because untreated Graves can be fatal. That’s first, and later you can deal with the weight. When you have a heart attack, you don’t ask about weight – your heart is at stake. Same here, Graves affests cardiovascular system, muscles, eyes. I had RAI at 41, now 3 years later I’m 20 lbs heavier but I sharply stopped exersising when I was diagnosed. I’m back to my home gym and intend to lose my weight by this summer. Yes, all I take is a small hormone pill in the morning, and don’t track my thyroid levels as often as before RAI.

Whether your kids will inherit – it’s anyone’s guess. Tell them of the possibility, and that they should watch out for stress.

[elf]

in reply to: I’m sorry me again but think I’m going crazy #1073112

hyperm – yes, I was this crazy, you are not alone. I just prefer to keep the memory of the past blocked off, it hurts so. It started when I was first pregnant, I got tired listening to my husband complaining about something (I thought he complained too much, instead of doing something about it), so I threw a pot of mashed potatoes at him, he ducked, a hole in the wall. I wasn’t diagnosed until my second baby was 8 months old, so it was 2 years of rages, fights, screaming, breaking dishes. Once hubby told me I was mental, and that was a mistake for him to do, oh what a red rag for a raging bull!!!

After RAI, my short fuse was slowly defusing, and now 3+ years later, I am not capable of holding anger for as long as I used to, when it grew in my body until all body was buzzing with hate and there was no end of what I could do – yell, destroy.

I can identify sooo well with what you say about your kids, looking apprehensively at you, trying to decide if another mad episode is coming up. It just hurts me that their earliest life was saddled with crazy mom.

I am not sure if you are deciding about RAI, and I know many people decide on other treatment routes, but it was a saviour for me, psychologically. Some people say they become anxious and frightened, but for me and you Graves perspires in rage and hate and destruction.

Have you seen this advise – when yelling , keep yelling "IT’S NOT ME IT’S GRAVES I AM SORRY I STILL LOVE YOU I NEED A TIME BY MYSELF" – if only I had known this trick when I had my rages, it would have helped.

P.S.: speaking of husbands, I don’t know what kind of a person would endure the raging Graves beside him, a saint maybe? I don’t know if I could withstand that kind of assault for years. Me and hubby both have emotional scars from that time. I know he was relieved to learn that it was a disease I had, I was not a mental case. If you could, in your "down time", try to tell him that it’s the disease that possesses you, that you as a person still love him and appreciate him sticking by you.

[elf]

in reply to: Orbital Decompression Surgery #1074420

Patrick – just wanted to say that you may not know how inspiring your video is to people. People with various degrees of TED now know that they can be helped and look much better – because you certainly are! Thanks from the bottom of my heart. (I’m waiting for my OD).

[elf]

in reply to: Bad Thoughts #1073164

I read people saying they can’t drive because of anxiety, can’t do shopping because of anxiety, malls scare them. Even with tyroid levels in check.

I personally didn’t have this type of anxiety, I had rages directed at loved ones. As long as we understand it’s the thyroid thing, we are not going psycho.

[elf]

in reply to: Eye Problem Post RAI? #1073225

I know, with your children you feel a 1000 times worse than if it happened to yourself. My son (he’s 4) has had some trips to hospitals, non-Graves related, and I felt so much more worse for him than for myself going through this Graves.

[elf]

in reply to: Eye Problem Post RAI? #1073222

Hi Amy,

My TED just started showing itself a month before RAI (an eyelid started getting puffy). After RAI, the eye troubles moved along with the dying thyroid: the hyper spike was 3 months post-RAI, and my eyes were the sandiest, the grittiest, the most watery then.

5 months after RAI, I turned hypo, and the sandiness/grittinnes started to subside. The watering continued till 12 months after RAI, and then – nothing. My eyes settled. So it took my eyes 1 year post -RAI, just like Dianne said.

However, my eyes protruded all along that year, so I have a mild to medium proptosis. Now, 3+ years after RAI, that’s all I have, because my eyelids "deflated".

Not all people have eye trouble in the year after RAI, in fact TED can appear at any point, but once your son is gone through the "hot" stage and his eyes settled, he’s out of the danger of having it again.

[elf]

in reply to: Should I be here? #1073248

If you have something bothering you because of Graves, yes, this is the place. You may have no thyroid and have HYPO questions, but some things may be caused by Graves antibodies that we still have.

[elf]

in reply to: Autoimmune Disorders #1073347

There is a person on the other board where I’m active, with both RA and Graves. RA for 16 years, Graves for 8 years.

[elf]

in reply to: Tips on dealing with fatigue? #1073337

That’s a tough one. I personally would think that the low energy and sore muscles would rather stem from Graves (from being hypo). Weight gain may be somewhat from both. Maybe someone here going through the same, could help :” title=”Question” />

[elf]

in reply to: Tips on dealing with fatigue? #1073335

Fatique, achy muscles, weight gain, no energy – may be indicators that you are a bit more hypo than you need to be. People may feel different (more hyper or more hypo) even within normal thyroid level ranges, so keeping track of your tests levels and connecting the numbers with how you feel will help you figure out where in the ranges you feel the best.

[elf]

in reply to: Treatments for Eyes #1073495

When in my tearing/sandy/swelling phase, the mornings were tough as my eyes were especially puffy after tears streaming all night. It was like crying all night effect. To undo that night "job", nothing helped but time. By mid-morning, my swelling would go down. Had I been working then (I was SAHM), I would’ve probably started waking up earlier if I wanted to look better before I appeared at work – depending on how sleep-deprived I was.

[elf]

in reply to: How important is TSI level for decompression? #1073399

I think having high TSI indicates a hot TED stage, so TSI test serves as an additional tool for determining how cold the stage is. I found this article that basically says that high TSI corresponds to the inflammatory stage of TED. Maybe that’s where the advise comes on other boards, to make sure to lower your TSI before any eye surgery.

Longitudinal correlation of thyroid-stimulating immunoglobulin with clinical activity of disease in thyroid-associated orbitopathy
Ophthal Plast Reconstr Surg. 2006 Jan-Feb;22(1):13-19

To investigate the possible correlation between the changes in inflammatory active phase of thyroid-associated orbitopathy (TAO) with measured changes in thyroid-stimulating immunoglobulin (TSI) levels over time. This study was undertaken to evaluate the potential usefulness of measured TSI values in following and treating patients with TAO. 9 A retrospective chart analysis was performed on 23 patients who had been referred to a tertiary care oculoplastics service between July of 2002 and April of 2004 with suspected TAO. The activity status of patients with TAO was graded by using the TAO activity scale (TAOS), created to distinguish between the active and cicatricial phases of TAO. Laboratory values of TSI reported during the course of the study period were compiled for each study patientLinear regression analysis revealed a statistical correlation between the changes in activity of TAO, as measured by the TAOS score, and changes in measured values of TSI over time. A statistically significant correlation was also found between the activity of TAO (measured by the TAOS score) and TSI valueIt was found that changes in inflammatory phase of TAO, as measured by the TAOS score, statistically correlate with changes in measured TSI. An additional correlation was also found between the absolute score of TAO activity and measured level of TSI. These findings suggest that serial TSI measurements may be an adjunct in assessing clinical inflammatory activity of TAO and may help direct clinical decision making regarding treatment decisions in TAO.

[Author]

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