Thyroid's out, Having Problems with Adrenals-ACE is being tried.

[Strawberry]

Nice work!

 

[Gingergrrl]

Agreed, your necklace is beautiful! Good work.

 

[daisybell]

Hi @Misfit Toy
Just wanting to check how you're doing this week??

 

[Misfit Toy]

@daisybell-that is so nice. Thank you. Everyday is a struggle. I go back and forth with energy levels, mood and exhaustion. Yesterday I was in bed, took a shower and that's it. I cried all day. I do not feel stable. Saturday was better, today was a little better but I always have this anxiety.

I went up on the Nature Throid because my dose is still quite low. I saw my rheumatologist today and that was a good appointment. It was sunny today and lifted my mood. I told him about the thyroid and he said it will take awhile to get grounded. Between how the surgery affected the adrenals, how not having a thyroid affects the adrenals, and the hormonal shifts due to lack of thyroid and perimenopause, he is going to try and get me into an endocrinologist that he loves. I may have to wait several months, but he doesn't want me to see anyone else.

He also diagnosed me with Serositis. I keep having like muscle spasms in the heart area. So, Sjogrens causes this. IT's called, Serositis, which is inflammation of the lining of the heart and abdomen. I have to go up on the Plaquenil.

I am hanging in. Always fearful. It's anxiety that I can't really control over....nothing. Just a feeling of anxiety. I have been taking ativan to combat it and drinking chamomile.

I am tired. Hanging in though and hoping I will have some sales because that's worrying me also. I am not working. Can't get out and do events.

Anyway, thank you so much for asking. I really appreciate it.

Yesterday, I was just so grateful to wash my hair. I washed it Wednesday, but it needed washing again. My energy is low and I can bathe everyday, but my hair is too much to deal with. Too much work! It's funny what you become grateful for...like washing your hair. I am always clean, but I so miss jumping into a shower everyday like it was nothing.

Holly-

 

[daisybell]

I'm sorry it's taking a while for you to feel better....
That's good that your rheumy has an endocrinologist for you. I hope the appointment doesn't take that long...

I know what you mean about washing your hair! It makes you feel better in yourself when you're all clean and tidy, but it's awful when it takes all your energy.

It sounds like you have a good handle on the anxiety and you're living with it as well as you can.

Your necklace that you made looks beautiful, by the way!

 

[Misfit Toy]

@daisybell -thank you. I kind of had an idea this would happen. that's why I was so scared about the surgery. I had reason to be even though so many people were telling me I would be fine, I knew better because of my whacko body.

The worst is the anxiety. Sometimes no matter what I tell myself (and I had anxiety prior to surgery, it's just worse now) I can't make it stop. So, the only thing I can do is just go to bed and hope for a better tomorrow.

Thank you regarding my necklace!

@daisybell -how are you doing?

 

[daisybell]

I don't see how you can make the anxiety stop - it seems to me that it is a symptom of whatever it is that is happening in the brain.. So it's not something that you can 'think away', however hard you might try. But if you can recognise it, accept its presence, and find the best coping strategies for you, then you are living with it as best as possible. Which is all we can hope for for now! Someday maybe the doctors will have answers and treatments, and we will feel better!!!!

Thanks for asking about me! I'm just coming out of a bad patch, which is a relief... I don't want to tempt fate by thinking I'm on the up, but I don't feel as unwell as I did, which is a huge relief. I'm just waiting on an ultrasound now to investigate some ongoing abdominal pain. I've got a new doctor as I moved house last year, and so far, I'm liking her and she seems to take my issues seriously - which I'm very grateful for. It's sad though isn't it when we are so grateful for actually being taken seriously!

 

[Thinktank]

@Misfit Toy, are you still on clonazepam? The reason i'm asking is because using two different benzodiazepines is a big nono. It would be safer to slowly taper from the ativan and substitute it with clonazepam.
Have you ever thought about taking a SSRI / SNRI for anxiety? Benzo's are so damaging when used longterm.

 

[Misfit Toy]

t's sad though isn't it when we are so grateful for actually being taken seriously!

It sure is. I have two doctor's that hug me when I see them and they are so nice...it's so rare. And yes, I get all happy because they take me seriously. That's what it's come to.

 

[Misfit Toy]

@Misfit Toy, are you still on clonazepam? The reason i'm asking is because using two different benzodiazepines is a big nono. It would be safer to slowly taper from the ativan and substitute it with clonazepam.
Have you ever thought about taking a SSRI / SNRI for anxiety? Benzo's are so damaging when used longterm.

I am. I only take ativan 1 mg, maybe once a day. I am on Klonopin and does nothing for anxiety and I refuse to go up on that. I am on 1 mg of Klonopin. I will not be doing this for long term.

I know many people get hooked on this stuff. I am not one of them. I have been on all kinds of pain meds, anxiety meds, etc and I hardly take anything anymore.

SSRI's make me vomit. My stomach doesn't like any of them. But, thank you!

 

[Mary]

@Misfit Toy - first, your necklace is gorgeous - I love it! It must have been a thrill to see a newswoman wearing it!

And I'm sorry too you're having such a rough time. Do you take niacin? It stimulates the GABA receptors and can be very calming. I found that the kind that makes you flush works best. I just tolerate the flushing, it goes away. Another good product is Theanine Serene by Source Naturals - it has l-theanine, GABA, holy basil and one or two other things, it's very good.

 

[Misfit Toy]

@Mary -I used to take niacin everyday...years ago. I may give it a try but I have to wait until I get my levels of thyroid medicine correctly up. Niacin flushes things out and that might not go well with this nature thyroid I am on. Also, theanine makes me nuts. I have horrible horrible nightmares on it. It's strange.

I have to do adrenal testing and then I will go from there. One thing that helped me years ago, that I am thinking of implementing again is, L-Serine. Not seriphos but straight up Serine worked nicely for putting me to sleep at night since that is when my adrenals come to life. I can clean my whole apartment at 2 am. It's nuts. From noon until 3, I am dead weight.

 

[Thinktank]

I am. I only take ativan 1 mg, maybe once a day. I am on Klonopin and does nothing for anxiety and I refuse to go up on that. I am on 1 mg of Klonopin. I will not be doing this for long term.

I know many people get hooked on this stuff. I am not one of them. I have been on all kinds of pain meds, anxiety meds, etc and I hardly take anything anymore.

SSRI's make me vomit. My stomach doesn't like any of them. But, thank you!

1mg ativan is not really a low dose, it's quivalent to 10mg diazepam (valium). 1mg clonazepam equals 20mg diazepam so in total 30mg is quite a large dose.

You think you are not hooked but believe me, if you stop the benzodiazepines abruptly you will enter hell.
The GABA receptors cannot bounce back to their original state overnight.

Too bad you do not tolerate SSRI's, perhaps buspirone might give you some relief?
You say you have been on many anti anxiety meds etc. Might it be that you are in a state of withdrawal unknowingly? For some people it can take years for their neurochemistry to even out, especially in us CFS/ME / chronically ill folks.

 

[Misfit Toy]

@Thinktank -I have not been on any other med in so long for anxiety. Only Ativan, as needed and I can go for months without taking. Haven't had Xanax since the 80's. Perhaps I said I've been on anxiety meds in the past, but nothing lately. Just now due to the surgery.

Buspar did nothing for me.

 

[Misfit Toy]

Soon to be 4th week since surgery. Feeling awful. The fatigue, but also anxiety. Labs this Monday. Can't wait for results. Even though I'm supposed to be hypo, my weight is dropping. My adrenals are also awful. This is so not easy. Seeing therapist twice a week due to anxiety and inability to cope.

 

[daisybell]

Oh Misfit, I'm so sorry! Are you eating ok? I hope the labs show that your hormone levels are awry, and that this can be remedied. You should feel better then. It doesn't sound as if you're hypo... When I was hyperthyroid, my anxiety was through the roof - any loud noise or sudden movement and I nearly collapsed from fright. It was horrible.
Hang in there my friend.... xx

 

[Misfit Toy]

Oh Misfit, I'm so sorry! Are you eating ok? I hope the labs show that your hormone levels are awry, and that this can be remedied. You should feel better then. It doesn't sound as if you're hypo... When I was hyperthyroid, my anxiety was through the roof - any loud noise or sudden movement and I nearly collapsed from fright. It was horrible.
Hang in there my friend.... xx

It doesn't make sense that I'm hyper. I'm not even on one grain. I should be on 1.5 grains by now. I don't know.

The labs will be the only way to know. I do know, it's suddenly so hot here and I can't handle the heat at all. My breathing is off. I have a migraine also.

Everything is confusion right now. Calling doc tomorrow. I do know that my body feels in shock. It's suddenly realized, it's missing a thyroid.

 

[Strawberry]

Hugs to you Misfit!

 

[Misfit Toy]

I am on a board on FB that is helping me untangle this mess. First, I have known for years my Phase 2 of liver is not working properly and I also have Celiac disease. Many on this site are telling me, when you have celiac and a liver problem along with weak adrenals, it's hard to convert T4 meds into T3. Even though NT has T3 in it, what might be best is Cytomel because then I would just get straight up T3 which would totally bypass conversion. Makes sense.

So, I am going to talk to my doctor about this and insist that we give it a whirl. There is no harm. Plus, because the adrenals are weak, my body is having an even harder time dealing with the conversion problem.

I sure am learning a lot about the thyroid....now.

 

[Misfit Toy]

I thought some could relate and laugh! :-D