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Thank you 11 years 10 months ago #1386

  • Julianna
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Hi. I am new here... and up early this morning because the high dose Prednisolone is keeping me awake, and uncomfortable. And sounds like you guys know what I'm talking about! I really appreciated the information booklet you can download from this site. I have been trying to link in with some good info and support, and it's been hard to find.

I was diagnosed with Aplastic Anemia (bone-marrow failure) in 1996... and in 2010, ITP... after bone-marrow biopsy, blood tests and frightening uncertainty because of the past. My platelets don't go much above 20, even on the Pred. So I had my first Rituximab treatment 2 weeks ago and they said it would take some time to work. My other counts are doing ok so far... but now I just need to watch for infection (which I'm kind of used to from my AA treatments).

Only issue is some joint pain and that my thyroid is becoming over-active. I'm hoping it's just from the Pred and will disappear when I come off it (which I hope is soon because it's not working anyway). Auto-immune reactions are a worry aren't they...

Well thanks so much for being there! Hope you all have a good day...

Jules

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Re: Thank you 11 years 10 months ago #1393

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi there Jules! I'm glad you found us. Stick around and learn, vent and share!

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Re: Thank you 11 years 10 months ago #1406

  • Angel85
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Hi Jules,

It's great that you have found this site and the forum. I have been able to get lots of advise and wonderful support from the other members here, so i hope you stick around.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:Thank you 11 years 10 months ago #1503

  • Julianna
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I had hospital appointment yesterday, and my results didn't get back in time!!!! So I don't know how my platelets are doing... 2 weeks after Rituximab. They said they'll call if there was a problem. But I've learnt from you guys, and my Dr, that it is too early to say. If in the next 2 weeks no improvement, they will give me another dose.

But good news though! They have cut down on my Pred finally! Yay! Glad about that. Hope I can sleep a bit better now. But there is still the underlying problem of my overactive thyroid. I really don't want to see another specialist. And I am now on a waiting list to see one in July. I'm just over it. Had enough of medical stuff!!!!

At least my bone marrow isn't failing me again. But I guess I wouldn't mind if it did you know. I've had enough. Maybe my body knows it too.

Sorry but I am feeling really yuk today. My life is quite overwhelming. Not just healthwise, but moving so far from my family and friends (now my friends wont talk to me) ... in a situation I feel that I had no control over. So each day I wake up, and have to decide to psych myself up and start afresh, or give up.

Never felt so alone in my life.

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Re:Thank you 11 years 10 months ago #1513

  • ddunn
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i am sorry you are feeling so yucky. Please dont feel alone. That is why I came here, to read...so i didnt feel so alone!!
I am new to all of this, and not quite understanding it yet..but trying.
I went for blood work Wednesday, and my platelets dropped to 127,000. after being up to 185,000. I just wasnt expecting the drop, i was on 70 mg of prednisone, and was hopign to wean it down some more, but with the drop, they wouldnt wean me anymore.
At diagnosis 3 wks ago, my platelets were 35,000....up to 185,000, now 127,000, and back to the doctor Monday for more blood!!!
I am not sleeping much .....and of course worrying alot...
so afraid of other things it could be!
I also live far away from my family, and lost two family members, my dad and my sister to multiple myeloma in the past year, so this is scary. But they say all my other counts are good, just the platelets...so i guess that is a good sign, but still scary to me.
Post here often, I get great comfort coming here....
I hope you have a better day tomorrow!!!!
denise

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Re:Thank you 11 years 10 months ago #1516

  • Bunnie
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Hang in there. Between the pred and the overactive thyroid, your probably sleep deprived, which can make you ride the emotional roller coaster with more dips than you typically would.

Rather than laying awake worrying, try getting an audiobook on CD or MP3 download (www.audible.com) and let it read to you, it lets your mind focus on something fun and your body rest to some degree. Find a book that pure "brain candy" and enjoy. I find that I can drift off better with it than turning on the TV or computer since I don't get more awake with the light stimulation.

Yes, it takes a while to get into a endocronologist for the thyroid review, but it will be worth it. There are actually several of us here who have either the autoimmune versions for Hashimoto's hypothryroidism(low) or Graves (high) thyroid issues. In the mean time, try searching to old discussion group for "thyroid" at discuss.pdsa.org/search.asp or chatting with the group at thyroid.about.com

The best cure for depression is finding a charity where you can give of yourself and appreciate the life you do have. And you'll make new friends! Is there a children's hospital where you can go in and volunteer to "rock" the premmies whose families have had to go home to the other children? Do they have other volunteer activities you could spend a few hours a week doing?
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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Re:Thank you 11 years 10 months ago #1518

  • Julianna
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Thanks so much for trying to help...

I'm sorry, and don't mean to put a dampener on what you've suggested, but I've been caring for others most of my life, and I've lost my care at the moment. I guess, to me, my depression is the heavier burden in my life, and maybe I shouldn't be airing it here. I see my new Psychologist on the 23rd of March, to hopefully get some help on how to practically cope with the way forward.

I've left a big chunk of my life behind... and am sad in grief I think. It's just horrible.

Thank you for simply listening to me.

P.S. I will check out the thyroid site. thanks

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Re:Thank you 11 years 10 months ago #1529

  • Melinda
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If your thyroid blood work is coming back hyperthyroid then why would you have to wait until July to see a doctor about it? I honestly dropped my jaw when I saw that you couldn't see a specialist until July!! Can your regular doctor help you with it [my MD could have but didn't want to because of my ITP]. Believe me, been there done that and the only "good" thing about hyperthyroid is once you've been hyper long enough you lose weight [no, not a good way to lose weight!].

Between thyroid and pred not getting enough sleep can really do a person in. I'm glad you have an appointment to see a psychologist soon - I feel bad for you that you feel you have left a big chunk of your life behind [is this because of ITP and hyperthyroid?].

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Re:Thank you 11 years 10 months ago #1530

  • Julianna
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Hey Melinda... thank you for your care.

Yeah I can't believe I have to wait til July either... there is just not enough Doctors and too many patients! I will keep in touch with GP and thats all I can do. I have to travel 2 hours to get to Melbourne for treatment and see the hematologist... so everything is a bit hard.

And waiting, as i'm sure u know, is the hardest.

To answer your question about leaving my life behind ~ I had to walk away from a situation. My new friends say it took courage, but I don't feel courageous, but scared to death.

I guess the stress of it all probably brought on my thyroid mania. And last night I didn't sleep much at all. Very tired. But glad I have someone to talk to. Thanks.

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Re:Thank you 11 years 10 months ago #1536

  • Melinda
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What has your GP said about your thyroid? All I know is if I get into the hyperT range [low TSH] now it is like I'm on a high dose of prednisone, not fun.

Oh, a 2 hour trip to Melbourne for treatment & the hematologist is a long ride.

Sorry to have asked about leaving your life behind - didn't mean to get personal, I thought maybe you meant leaving your old life [before ITP] behind. I hope everything works out for you!

Hyperthyroid and pred = not good sleep or much sleep. Try to get your rest because being rested makes all the difference in the world.

You take care - and we are here for you to talk to!

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Re:Thank you 11 years 10 months ago #1538

  • CindyL
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Just my 2 cents, but I've had low thyroid longer than I care to remember and I have never seen anyone other than my family doctor for it. At this present time, my thyroid is normal, whatever that is. I am on pred, but not for the thyroid, for the ITP.

Sorry you are going through all this, Julianna. Hope things straighten out for you soon.

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Re:Thank you 11 years 10 months ago #1541

  • Melinda
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Cindy do you mean you were hypothyroid? Or by low thyroid you mean your TSH, therefore you were hyperthyroid? When my thyroid problem was discovered my TSH was so low it could not be read - that low is hyperT.

Since there are a few ways to deal with hyperT my MD thought it best I see an endocrinologist. And I'm glad he did.

Glad your thyroid is doing well - are you on med for it?

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Re:Thank you 11 years 10 months ago #1545

  • Julianna
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Hey guys... so I'm not alone with thyroid issues either.

I do have ITP at present, but have just been diagnosed with hyper-thyroidism too. My TSH level is 1.something I think? Meant to be over 3 or 4. So maybe my GP is not too worried. But I'm starting to get the feeling that if I'm not on top of all this, myself, these country Doctors will miss something! They seem far too relaxed. But in any case, I still have to wait to see the thyroid specialist in JULY.

Wonder if these 2 auto-immune conditions are somehow related....?

Why is my body trying to destroy itself????!!!!

Is it my negative self talk all these years... and now my physical body is catching up... who knows...

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Re:Thank you 11 years 10 months ago #1549

  • CindyL
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Melinda, when I was diagnosed with the thyroid problem, my doctor was surprised to see me WALK in! He said with a count as low as mine, I should be crawling in. I'm on Synthroid Levothyroxine for it.

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Re:Thank you 11 years 10 months ago #1562

  • michel
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Julianna, I wish you the best. I too was on a high dose of pred for quite a while. At times my counts wouldn't change for weeks. However, one of the side affects I felt from prednisone, was depression. I was sad, lonely, upset and cried for no reason. I know I can't possibly understand what you've gone through, however taking prednisone doesn't help with emotional well being. I do remember my days/weeks/months as an insomniac, I got a low dose prescription for ambien but that didn't help every night. Hang in there, talking or writing it down helps and you'll get through this part of soon.
Michel

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Re:Thank you 11 years 10 months ago #1580

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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That is werid Cindy because low is hyper....high is hypo. With a low TSH, you'd sort of feel like you were on steroids or a caffeine high; no sleep, jittery, shaking, pounding heart, etc.

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Re:Thank you 11 years 10 months ago #1581

  • Julianna
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Hey I just got news that my platelets went up to 37! It's almost 3 weeks after first dose Rituximab, and I know that the count goes up and down regularly... but the Pred may have helped too. Hope this means something is working for me!

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Re:Thank you 11 years 10 months ago #1582

  • Bunnie
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Thyroid Stimulating Hormone (TSH) is produced by the pituatory gland and has an inverse relationship to the thyroid levels. It's kind of like a thermostat sending out signals - when the room is cold it tells the furnace to kick on. Therefore the higher the TSH the more the pituatory is trying to get an underactive (hypo/low) thyroid to put out T4 into the system. The lower the TSH, the more it's telling the overactive (hyper/high) thyroid to stop producing T4. The new "normals" from the American Endocrinology Society are .3 to 3.0. I actually feel best at around 2.

If you're hypothyroid the common treatment is synthetic T4 in the form of Synthroid or Levoxyl. The liver converts T4 to T3 (synthetic = Cytomel) which the muscles and endocrine system utilize. I actually take both synthytiod and very low dose of cytomel. Some of the hyperthyroid drugs can be detrimental to platelets, so check the warnings page.

Julianna, this board is for what ever you need at the time, if you need to vent and express how you're feeling, it perfectly okay. We'll try to be helpful and if our advice doesn't work for your current situation that's okay too. Everyone is in a different place, and there will be someone here who might have the words that help you where you are today.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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Re:Thank you 11 years 10 months ago #1585

  • ddunn
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U are so right. I find comfort coming here.........and read for hours, esp in the middle of the nite.........

Denise

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Re:Thank you 11 years 10 months ago #1592

  • Melinda
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That's what confuses most - hyperT means low TSH [as I said, mine could not be read it was so low] and hypoT means high TSH.

The American Association of Clinical Endocrinologists says the target range for TSH should be 0.3 - 3.0, I thought that was for those who are treating but won't swear it.

It would be so nice if one size fit all - meaning a certain dose of Synthroid would guarantee a TSH of 1.7 or whatever. I feel best at 1.something.

Yes, anti-thyroid meds taken for a hyper thyroid may cause low platelets - that's why my endo and hematologist put their heads together.

Julianna how much prednisone are you on? Good count - fingers crossed Rituxan does the trick for you!

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Re:Thank you 11 years 10 months ago #1597

  • tofer
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jules

You have to do what you have to do to be safe...to keep your sanity to remain sober, or to protect your health. Old friends be danged. Sometimes you have to make decisions for a better future. Even if it makes for a lonely today.

Now lets talk about the pred. YUCK. it made me hungry & mean. the reduced dosage should help but it wont help today maybe tomorrow...

Hang in there we are keep you in our good thoughts.

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Re:Thank you 11 years 10 months ago #1618

  • Julianna
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Thanks for your support everyone. I am now reducing Prednisolone... yay! Because it wasn't doing much anyway. So now I'm up to half a 25mg pill. And next week I move to just 5mg. Then I'm off! Yes! Been taking other medication to help me sleep. It helps sometimes. Did last night thankfully. Trying to get out to excercise a bt each day... but hard when I get bone-pain in my limbs and shoulder. But should settle down soon.

Thanks again for being there my friends! :) Feeling a little better this morning after some sleep.

Take care all,
Jules

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Re:Thank you 11 years 10 months ago #1780

  • Julianna
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Hi all. Just checking in...

Went to GP this morning. Had a blood count the other day and results were: Platelets 28! I can live with that. And amazingly, my thyroid test came back more ok too.

Therefore................ I am cancelling my July specialist appointment! So I am very pleased about that. I really don't need anything else to go wrong. So I'm just gonna go with the flow, and I feel more able to, since decreasing the Pred. Feel more like myself. And I need to, because I have other personal issues to deal with at the moment.

See my new Psych on Tuesday, and hope to develop a good supportive relationship with her, so I can move forward through my mess.

Hope you are all doing OK today! Because today... actually this moment... is all that matters. Take care.

xx Jules

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Re:Thank you 11 years 10 months ago #1785

  • ddunn
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U sound much better today jules!!!!!!!!!! Keep us posted. I am glad you are doing well, and hope your appt tues goes well.

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Re:Thank you 11 years 10 months ago #1786

  • Sandi
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Jules - maybe you should keep the July appointment? It couldn't hurt. Maybe get tested for thyroid antibodies and keep an eye on things, just in case. If something comes up, it would be months again until you could get in.

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Re:Thank you 11 years 10 months ago #1787

  • ddunn
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that is good advise...I agree. I wouldnt cancel it till that week, if you wanted to cancel.

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