Wednesday, March 4, 2009

Finally, an update

It's been a long time since I have posted anything. I have been feeling terrible, and that is putting it mildly!

As of late, I've been almost unable to walk! My joints have hurt so bad, I just couldn't even describe it. The problem? My thyroid.

I had been back to my local endo, and we know that my thyroid is low, making me hypothyroid. She has me on 25 micrograms of generic Synthroid. Acutally, she never said it had to be generic. If I remember right, the pharmacy asked me if it could be generic, and I said yes. Anyway, she said she couldn't raise my dose because she didn't think my adrenals could support it. My morning cortisol, last time it was tested, was at 1.8. That is very low. She admits that all of my numbers confuse her. LOL! Poor woman! I'm giving her a work out! Anyway, my Free T4 is at .7, which is the bottom of the "normal" scale for that level, and that is with me being on some thyroid medicine. It's a low dose, but it IS something!

Anyway, I tried taking my hydrocortisone (hydro for short), to see if it helped. There was an off chance that my joint pain was from being too low in cortisol. I took hydro and all it did was give me indigestion! It didn't help with the joint pain in the very least! That confirmed to me that it was from my thryoid, not my adrenals not working right.

I have higher tests at night, sometimes, and I still have symptoms of Cushing's. I'm gaining weight, etc. I spoke with my Cushing's specialist in California tonight. He is putting me on 100... not sure if it's micrograms or milligrams of Levoxyl for my thyroid, and he said to make sure it's name brand. No generics.

As for the Cushing's, well, it's plain to see I have physical symptoms of Cushing's, and I have labs that are high, but not diagnostic yet. I'm so cyclical, it's hard to get the high numbers I need. I've had a follow up MRI and it showed nothing. So, he said I have 3 options.

Option #1. I could go back for more pituitary surgery. They could take out a bit more where they removed tumor before, and hope that they get the extra cells that are causing problems. This is not an option as far as I'm concerned. I know the risk of a CSF leak (cerebral spinal fluid) are much greater on a second surgery. I also know the percentage of a cure are very slim. Well, slim to me anyway. I know that it almost guarantees that I'll have more pituitary function lost. I'm not willing to go down that road. In my heart of hearts, I believe my problem lies in my adrenals, not my pituitary.

Option #2. I could have a BLA (Bilateral Adrenalectomy, where they remove both adrenals), which is what I want, but I need to get more high results than what I have so far. I am so cyclical, I don't know how many more months it might take to catch my highs.

Option #3. I can take Ketoconazole. It is an antifungal drug. It is also used in Cushing's patients sometimes, to lower cortisol. It is not meant to be taken long term, in most cases. This should give me relief of symptoms. I'll also have to take 15 mg. of hydro in the morning. I'll take 200 mg of the Keto at night, before bed. We might need to play around with the dose later on. Lots of people find relief with this route. It sort of induces a chemical BLA, without actually taking out the adrenals. If the results are favorable, then a BLA should work just fine. If it doesn't yield any relief, or improvements, then having a BLA probably won't either. Keto, taken at high doses, for long periods of time, can cause liver damage, BUT, I'm told that when it is stopped, the liver "damage" leaves and it returns to normal. Since I'm not going to be on real high doses, I shouldn't have that problem.

I chose option #3. I'm not real keen on taking Keto, because of the liver issues, but he made me feel better with what he told me, and I want RELIEF! Honestly, I feel so bad, I can't put it into words. At least not any that are nice and that I'm allowed to say. Since the beginning of the year, I have went straight downhill, and it just keeps getting worse! I figured that this is the best route for me to go. I will get more immediate relief, and it will show us how a BLA would do for me. I'm not certain, but I think that if this proves to work good (I feel better and start losing weight on it) I can then go on to the BLA. I'm not sure if I will still need to do further testing or not. Right now, I'm not worried about it. I just want to feel better! I can't wait to feel some resemblence of normal again!


judycolby said...

Between keto and more thyroid meds, I hope you get some relief. It will make everything seem much better.
How soon do you start? Our pharmacy has to order the keto.

littleoldladyinashoe said...

Gracie, when I was on GH I was in the most miserable pain ever. I didn't loose weight or have energy or anything it made me feel horrible.
I thought for sure that I was high on cortisol again recently but it turned out the opposite, less than 2. I can not loose weight at all. I excercise 1 hr+ every day and I haven' lost a pound after a few months!
I have no idea what it is now. I just started on bc pills for the hormones to see if that helped, but they aren't doing for me what the femhrt did. I know you had a hysterectomy or partial but maybe you aren't making enough hormones? too much?
Unfortunately our hormones can really drag us down.

Gracie said...

Thanks guys!

Judy, I'm not sure how soon I'll start. I haven't heard from the pharmacy yet. I'm thinking of trying to get a few highs before I start. I don't know for sure what I'll do. I can't wait to get the new thyroid med.! I'm still a little leary of the Keto. I'm so cyclical, I wonder if this is going to make me feel horrible because of that. I'm willing to give it a try though!

Christy, I've had my hormones checked over and over, and everything is great. I'm not on any replacements other than GH and now thyroid. I have one ovary left, and it gives me what I need on everything that way.

I've been on the GH for over a year, and I've never had a problem with it. I'm on .4 Genotropin. Dr. F. started me there, and I've always stayed there. My levels of that are great too! I'm at 231. I had everything checked a few weeks ago. We know my thyroid has been tanking. I really think that is my problem at the moment, as far as the hurting goes. I've gotten some high cortisols, and I still cycle like crazy. I started gaining weight again, red face and neck... the whole nine yards.

Have you tried the compounded topical hormones that Dr. F. prescribes? I think they work better.

You are right, these hormones really drag us down. Too bad it is such a mystery for most doctors on how to deal with all of them!