Lorelei has been diagnosed completly now.

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10-27-2008, 07:08 PM
Brandi

Lorelei has been diagnosed completly now.

Here is a page started by my sister where she is getting support and able to talk to people who understand what she is going through. Please visit if you want and read about her and see photo's. http://www.caringbridge.org/visit/loreleisellars
They have alot to digest and a new way of life they will have to be strict about. But she will be ok. She has to take steroids for the rest of her life. Take a thyriod med and test her blood twice a day.Not sure that is a very good thing. But I don't know if that is their only option yet. We will see.
10-27-2008, 07:13 PM
TsPoet

Quote:

Originally Posted by Brandi

Here is a page started by my sister where she is getting support and able to talk to people who understand what she is going through. Please visit if you want and read about her and see photo's. http://www.caringbridge.org/visit/loreleisellars
They have alot to digest and a new way of life they will have to be strick about. But she will be ok. She has to take steroids for the rest of her life. Take a thyriod med and test her blood twice a day.Not sure that is a very good thing. But I don't know if that is their only option yet. We will see.

Mostly it's pretty good news. As long as you are all watchful and consistent!
Are the blood tests what you are worried about and are they for glucose levels? If so, stop worrying, they have these tiny little glucose meters that require tiny drops of blood and it's no biggy. As long as she never wants to play guitar.
Likewise, the doctors will monitor her thyroid, etc. It's great that she's alive now and not 100 years ago!
10-27-2008, 07:20 PM
Triskeliongirl

Wow Brandi, turns out Lorelei is a lot like me. I also have autoimmune thyroiditis, its called hashimoto's, and yes, I take thyroid hormones everyday. But its not big deal, once we found the right dosage. For her it may change as the disease progresses, but in some ways for me it got easier once my throid just shut down, since now my replacement dose doesn't change very much. There was a thread on it here once, you may search and see lots of us have it and manage it quite well. But unmanaged you can literally think you are dying.

While I am not insulin resistance, I have impaired glucose tolerance, which also means I have to check my blood sugars regularly. Again, no biggie, and what I have learned is that as long as I consume a diet low in carbohydrates and exercise I can normalize my blood sugars.

So, while we may not be exactly the same, I am telling you that these kinds of things can be managed quite well. I am a very healthy 51 year old women (as long as I take my thryoid meds, and eat the foods I can metabolize), normal healthy weight, had 2 healthy kids. My doctor says I am healthier than his so-called 'normal' patients. So, indeed it is good news that Lorelei seems to have problems that can be easily managed.
10-27-2008, 07:22 PM
carpaltunnel

Brandi, tanhks for sharing about Loreli. I've been wondering how she is doing.
10-27-2008, 08:32 PM
maillotpois

Wow - I have Hashimoto's, too!
10-27-2008, 08:47 PM
Zen

'Also, for some reason they end up having "unruly curly" hair which Lorelei has ended up with as well."

Like this?
http://i206.photobucket.com/albums/b...ssJ1copy-1.jpg
that IS unruly!
So glad you finally found the cause and it sounds like it can be managed easily.
10-28-2008, 01:49 AM
Mr. Bloom

This is great news! I'm encouraged hearing the parallels to tris and mail as well.

I hope your sister finds peace in this; it seems she has really struggled with the uncertainty.
10-28-2008, 07:16 AM
Brandi

I Gave my sister a link to this post so she can see there are a lot of people who are dealing with similiar situations. She is going to have a lot of adjustmant in her life. But I think she can do it more then she thinks right now. She is overwhelmed with all they are throwing at her. Which I would be to. Once it sinks in I think she will see it is an adjustment she will manage well. It is just a lot right now.
10-28-2008, 07:23 AM
Brandi

Quote:

Originally Posted by TsPoet

Mostly it's pretty good news. As long as you are all watchful and consistent!
Are the blood tests what you are worried about and are they for glucose levels? If so, stop worrying, they have these tiny little glucose meters that require tiny drops of blood and it's no biggy. As long as she never wants to play guitar.
Likewise, the doctors will monitor her thyroid, etc. It's great that she's alive now and not 100 years ago!

No I am not so worried about the blood tests. More the steroids. I have taken them in the past for a short time and hated them. They made me really moody. And having to take them for the rest of her life!
They are checking her blood twice a day because the steroids can make her produce to much insulin because of her thyroid or something like that. And she could end up with diebetes. Like she needs that too.
And you are right about alive today and not even 30 years ago. But it is still a lot for my sister at this point.
10-28-2008, 10:42 AM
Triskeliongirl

Brandi, I know your sister is scared now, because the symptoms of untreated hypothyroidism are indeed scary. I remember once when my mom was in the hospital through an error they had stopped her thyroid meds, and I was summoned because they thought she was dying. But, when I reviewed her meds we discovered what had happened. Thyroid hormones are that important!

I don't totally understand why they are giving her steroids, but perhaps its more complicated than your sister explained on the blog. Perhaps its to calm down her immune response, in which case perhaps its only short term. The thyroid meds are definitely for life but its no biggie, they will only make her feel better, but I am not so sure about the steroids.

Your sister will have to expect changes to the dosage of her thyroid medication, both as the disease progresses, and as she grows. But she is lucky, because thyroid disease is completely treatable with replacement thyroid hormones. In fact, most people with hyperthyroidism have their thyroids completely destroyed and then are given a full replacement dosage. People with hypothyroidism (of which hashimoto's is just one type) usually experience a gradual decline in thryoid function until they too end up on a full replacement dosage. But, with the right medication, she can have a completely normal full life. Its just not that big a deal.

The glucose stuff is more of a lifestyle adjustment. I follow the diet in Dr. Bernstein's diabetes solution. Even though she isn't diabetic yet, if she has problems controlling her blood sugar, the advice there is very appropriate. Basically I eat lots of protein and non-starchy veggies, but don't eat starchy carbs or sweets. My rule is that I don't eat foods that raise my blood sugar higher than 120, 1 hour after eating, and higher than 100, 2 hours after eating. Fruit is touch and go for me, if I have just exercised (cuz exercise improves your insulin sesitivity/glucose tolerance), I can usually tolerate lower carb fruits like strawberries, canteloupe, prickly pears. She may not need to be as strict as me. Obviously this needs to be discussed with her doctors, as I don't have all the specifics of her case. I'll also tell you this kind of nutritional therapy is controversial, but it works. Just, a lot of people would rather take pills so they can eat sweets, but I find my body works best by only eating foods it can metabolize well. Despite what people here may think about carbs and exercise, I can ride a century on my protein shakes with snacks of almonds and hard boiled eggs. Now power bars or gels for me!

p.s. I also have wild curly hair, and I LOVE it!!
10-29-2008, 07:58 PM
carpaltunnel

Zen, you must have to get your hair straightened for the accordian concerts?
:)
10-30-2008, 03:02 PM
Duck on Wheels

Brandi, I'm so glad to hear Lorelei finally has a diagnosis. Not only does she have a diagnosis, but it's one that modern medicine can offer help with! That is indeed good news! And if it's any comfort, I offer the following words of wisdom (supposedly from a revered Mormon elder):

The secret of a long life is to get yourself an incurable disease ...
and take care of it.
11-04-2008, 07:25 PM
crazybikinchic

Dh takes steroids due to transplant. The body will get use to them. She may be emotional at first and may have some sleeping issues until that happens. It will be important for her to take them around the same time every day. If DH does not get the steroids in about the same time within 4 hours or so, he ends up being more emotional.
11-04-2008, 07:39 PM
Brandi

Quote:

Originally Posted by crazybikinchic

Dh takes steroids due to transplant. The body will get use to them. She may be emotional at first and may have some sleeping issues until that happens. It will be important for her to take them around the same time every day. If DH does not get the steroids in about the same time within 4 hours or so, he ends up being more emotional.

Thank you I will pass that info on to my sister. Any advice she can get is helpful.
11-05-2008, 07:18 AM
smilingcat

Hi,

Thank you for keeping us informed on Lorelei condition. And thank goodness the doctors are sure of their diagnosis. And really graetful that the diagnosis is very treatable.

I wish little Lorelei a healthy happy life and to the rest of Lorelei's family as well. Speedy recovery back to being a normal healthy girl.

smilingcat