For the last few days, I've been shaky. My hands are shaky, I have lightheaded moments and my body feels kinda shaky as in I feel like a wobbly old lady sometimes, a little off balance. (Well, I'm off balance in other ways but I mean physically.) Going down stairs is a bit of a challenge and I take them carefully.
My hgb was 10.0 last week despite 4 weeks of procrit by then and I have my monthly at the moment. Does "blood" loss contribute at all to a decrease in hgb?
I see the doc tomorrow so I'll mention it .. just wondering if this is familiar to anyone and what it indicates? Just feeling very bizarre lately.
Sorry to hear about how you feel. As you know I'm not on tx yet, but that with the monthly thing... I start feeling light headed when it is much. I certainly felt like this when I had it two weeks ago as my coagulation factor was low and I had a quite heavy one. I was kind of wobbly on my feet and was feeling a bit fainty. So having low Hb and that, it would make sense to me.
Hopefully they will suggest a full blood workup tomorrow, including a complete CBC, serum iron, Iron Stores (Ferritin, Trans Ferrin Saturation). and a Thyroid panel. If not, I'd ask for it. Besides your ears -- best checked by an ENT -- are you drinking enough water? An easy time of the year to get dehydrated, especially if on interferon. Hope you feel better soon. Also consider a few days of rest. Climbing stairs and interferon don't often mix!
The past month I have been very shaky too hands shaking the whole nine yards. In addition I also feel my balance is off at times....If Im driving I go over curbs, and walking in the house bump into corner walls! I was checked out all is ok..I feel its just the meds doing its thing........The sx have been changing constantly from week to week especially the past couple of months.
This all started aroung week 25 Im going on 39 tomorrow. My exhaustion has gotten
so bad..Im also holding at 10.6.
just kidding… it’s just taking the Procrit a little longer to work for you, you may be in the 4 to 6 weeker group. I remember these feeling at about 7 weeks into tx and two weeks into Procrit and and it hit 18 feet in the air on a ladder changing light bulbs, had to go home for the rest of the day because of the shakes.
Hope the Procrit kicks in soon for you.
I thought my shakiness was due to my low hgb, but when my blood levels hit the "normal" point, I was still shaky and lightheaded, and short of breath.
Jim always has excellent advise, maybe they can check the thyroid and iron.
A ten hgb is still low, you're right to wonder about the menstual flow going out while the red blood cells are still dying off from the tx.
Take it easy....
Sorry your feeling 'bizarre', it's quite unnerving. I had balance, coordination problems during tx (now!) and walked into wall's, doors, walked 'drunk' at times. Also stopped driving halfway into tx. That Hgb at 10.. mine hit 10.3 it floored me. Very light headed. No rescue drugs allowed so reduced Riba but the balance thing didn't improve much when it went back to 11-12.
During weeks 4-9 ish....I had 4 full cycles and they did say it wasn't helping the case any. Had to get a Gyn. clearance. Another Dr. also said it was not good. I began doing my shots in my hips rather than my stomach and had little or no more cycles thru tx!?
The fatigue has got to be getting to you. Really take it easy! You suffer badly at the least over exertion-per your bodies capabilities now, not the norm. I learned that fast.
There could be a bunch of things going on...My experience with the anemia...it isn't just how low the number, but also how fast it drops...if it drops over just a few weeks, your body doesn't have time to adjust...-and you feel BAD!
Your electrolytes, particularly potassium and magnesium may be depleted...if you have muscle spasms as well, this may be it...Are you eating? If your blood sugar gets low, this can cause shaking, fatigue and headaches...and then there's thyroid issues...At around week 8-10 I got thyroiditis from txing and was very hyperthyroid...it was at this point my cycles stopped, my anemia was worsening because of the stress the HPT was causing, and I was very shaky, hot, had a sensation of rapid heart pounding, and bowels were "hyperactive"...
As has been mentioned...When your HGB is in the 10's (or lower), it won't take much to exhaust yourself...( Eg. Raising your arms in the shower...a walk to the bathroom...changing the remote..LOL) Hang in there...((((((((((HUGZ))))))))~Melinda
You guys are all so great .... I haven't had time to respond as yet but made sure I read all the comments before I left early this morning for my 24 week appt and took the various bits of advice to heart.
FlGuy...the doc checked my ears and they're both still there and still facing the same direction. Thanks :)
Jim / Kristina - dead on - I told the doc how I was feeling and he just looked at me and said "thyroid". He ran the test and I'm hyperthyroid and he's starting me on beta blockers today to "slow me down" - that oughtta be a neat trick - and then getting me into an endocrinologist asap.
Jasper .. I live alone so everybody is safe. :) you're right about the procrit, just took a little while because.....my hgb is 12.* today!!!! Woohoo!! no eprex/procrit for me this week and if that holds then none next week either and this is VERY good for keeping me off of any more riba reductions.
Jim re: iron stores....I asked the doc about that today and said I wanted an iron stores test and he said I don't need one because obviously they're okay if the procrit is working. I told him the drug insert says that iron stores should be tested before starting procrit and during and that my test is from 2007. He agreed to get a current iron stores test done. Now I'll have a benchmark and that's what I want. Thanks for the advice....on this and everything.
Charm....always nice to hear from you and thank you for the encouragement. I'm so proud of you .. you're almost there and it's been so tough for you lately. Just hang in there, eyes on the prize and I am SO MUCH looking forward to celebrating with you when you are done tx. *Please* take very good care of yourself...please.
Izzy (how's it going!? Hope the sides are light!), fret (my dear friend), Bug (always good to hear from you), LL (so glad you're done tx!), MedicMommy (hurray for you being done too!), --- Thanks for the input, the encouragement and just for being there. I take all the bits and pieces from everyone and throw it into the pot and it all helps, especially the encouragement and support. Thanks so much.
Doesn't help that I've been pushing the envelope with much overtime and too many 14 hour work days the last two weeks dealing with a nasty computer virus infestation at work ... I am so tired of viruses in general, let me tell you!!
The reds are up, the whites are down, the thyroid is hyper and the girl is exhausted. No idea yet what all this thyroid stuff means, have only had a little bit of time to read so far and here's hoping it's temporary. I imagine I'll be posting to ask questions about that too.
What would I do without this place...what would we all do. Nobody else gets this like those going through it. Thanks for being there, everybody.
You are going to feel SO MUCH better as the beta blocker kicks in...and you'll have an easier time controlling the anemia...Just in case you weren't told, though, when your thyroiditis "flips" from hyper to hypothyroid,(it took mine about 2 1/2 months), you'll suddenly begin to feel achy, lethargic and worse brain fog...Don't just stop the beta blocker! It has to be tapered down over a couple of weeks to prevent bad things from happening...You are going to have a bit more energy shortly...I found it a welcome change! Hang in there...Oh, on the computer virus...it sounds like it caught Hep C...Probably geno 1a...LOL HANG IN THERE! (((((((((((HUGZ)))))))))) ~Melinda
Girl, I have to give you a HUGE cheer for working so much on that Hgb count! Let alone tx. I couldn't drag myself to the bathroom until my bladder was going to burst when it was 10 ! I never thought of it the way medicmommy said....when it dropped fast, so did I.
Past threads have swayed both ways on whether the thyroid goes back to normal. My NP had said it would stay if it went either way, but she said a few things this site proved wrong! :)
Aw yes, the thyroid it remembers me well, just like a pup seal, in a pool of sharks fighting desperately to find balance only to be gaffed by the gripping jaws of death of the great white and gasping for air while being submerged numerous times with its heart racing, disoriented, and dizzy from the adrenalin rush of panic. The body is at its highest state of alert and the organs are thrashing and quivering and working at an accelerate pace in the production of…. the true motivator of absolute fear to escape the wrenching grips of the THYROID, only to be released by the newly fowled waters of its capturer, cut, bruised and shaking by the plight of the endured attack, it rest calmly floating in the water as the tremors reverberates through the various wounds left by its attacker and finally finds sanctuary to rest as it eats among the kelp and not knowing when to stop, it sinks slowly to the bottom for the weight that now holds it down leaves it motionless, floating along the bottom of the vast ocean until it finds the nutrients it has been searching for. As the ingestion of these takes hold the pup slowly reaches the surface not in a big splash but calmly as it continues its journey to svr island.
The thyroid is a marvelous little organ that can raise havoc but for such a little one it can have an attitude at times, lol.
Glad to see it got picked up early, mine played hide and seek for months and drove me nuts before reveling itself, it went from 2.271 before TX to .018 to 51.839 and last checked it is resting at 4.525.
Trish, I do have a question tho, why are you going to play bouncy ball with the hgb? If the Procrit worked in getting your hgb back up after 5 weeks do you not think it will go back down in between shots? Just curious, thanks.
My thyroid measures at .05, jasper. Don't know where that sits on the scale but seems a bit much below the lower range. I sure hope the shakies go away soon...escalators down at work are out of the question now.
On the procrit, wondered about that myself but only got the word yesterday that my hgb is over the 12. I go for another blood test this Tuesday, results on Wednesday and they'll see I guess. They were talking about going to procrit every two weeks. (Maybe I should just say epo as it covers eprex and procrit :)
I think it's that once it's over 12.0, they need to back off, so they're checking to see how it goes and I'm uncertain at this time exactly where we're heading, just taking it week by week at the moment.
LOL, always loved the elevators especially when going down and the stopping, always thought if I had a cut on my big toe I would bleed out. On the epo, if I remember jmjm and alagirl had some discussions on the tempering of epo during treatment which I came out strongly against but in the heat of battle anything is lobule to come out. Hope things are holding on the next test. Been wondering why you’ve been quiet lately. Keep on Trucking…
Just curious...Do you know what your T-3 and Free T-4 levels are (thyroid)? If both of these are elevated and your TSH (Thyroid stimulating hormone) is below 1.5 (range differs slightly depending on tests) you are very hyperthyroid (excess thyroid hormones)...Now, if the TSH elevates and the other two are low, you are hypothyroid (too little thyroid hormone).
The Drs have to be very careful with the Epogen and Procrit meds...Too much can inflame your spleen, causing it to potentially rupture (because it is trying to deal with an overload of RBC) and too many red blood cells (RBC) can cause thickened blood and clotting as well as circulation problems...One of those meds that more is not always better...Hope this helps... ~Melinda
Melinda: I didn't know to ask about the T-3 and T-4 levels. All I know is my TSH is .05. They called in a script to my pharmacy for beta blockers same day and were trying to get through to my doc same day to get me into an endocrinologist. I think part of that is my trial nurse is going on vacation for two weeks and she likes to wrap things up before she goes. The speed with which they were moving had me a bit alarmed but also grateful.
The doc is being careful with the epogen and as tedious as it's becoming, the weekly blood tests are monitoring everything until I get more stabilized away from areas of concern.
I've actually been on a 25% interferon reduction for three weeks now as my ANC and lymphocytes finally dropped below allowable levels and I'm just taking that a step at a time. Still UND at 24 weeks since 6 weeks.
Melinda and Jasper: Question...how long does it take the beta blockers to kick in and settle down the shaking? Now that you're done treatment or before you were done, did your thyroid go back to normal?
It took 2 days for me to start noticing the effects of the beta blocker, and by day 4 I began to feel less fatigued and the tremors were almost gone...After about 10 weeks of being hyperthyroid, mine "flipped" over a 1-2 week period to hypothyroid...(The change was pretty dramatic...I felt BAD!) I've been on Synthroid to help the levels stabilize for 7weeks now, and my thyroid is still adjusting...I'm running the tiniest bit hyper right now and was told that it will stabilize (hopefully go back to normal) within a few months...I think as long as you're only diagnosed with simple thyroiditis, the thyroid is expected to recover...(((((((((((((((((((HUGZ))))))))))))))) ~Melinda
I would say I felt better about 3 days after starting. I had started the synthroid around week 22 and continued to week 50 and tried to taper off but because of going back to full dosages at the last 4 weeks of soc it crashed again and then tried again to tapered off at week 52 for the final week and stopped at 53. There was a dip and then an increase in emotions and minor sx but the thyroid started working on its own around week 54 when the lump at the base of the throat had subsided.
At the last blood work my tsh was sitting at 4.5 so by the old standards .5 to 5.5 I am in the range on the high side, but the new range of .3 to 3.0 I am over and in the hypo range but will know where I’m at in a couple of weeks. Yikes! INF reduction, riba reduction and now Procrit, seems a little a** backwards to me. Sounds like everything went to hell in a hand basket and you are now in the hepper zone. Hang in there, it seems that around the 24th to the 30th week is when the total saturation point hits for most, and the pendulum swings to the toxicity side and when the harsher side effects hit the weakest links of our systems. Hope you feel better soon!
Thanks for asking .. yes, I'm surprised .. by the third/fourth day on the beta blockers, the shakes have subsided considerably and I'm back to riding escalators down again. I'm terribly fatigued and not much get up and go but I've burned myself out lately too and trying to catch up on that. I appreciate your input, it helped to settle me down to have some understanding of what was going on. Take care.
Trish - I didn't realize the problems you were having! I am glad the Procrit is working for you. My doc says it is not a big risk for clottint, etc. unless you keep taking it after your HGB gets to 12 or above. Sounds good that it is discontinued for now. I hope the beta-blockers work as well. It sounds like they are.
Thanks for your thoughts. I seem to be doing much better with the shakes and I actually had an evening where I managed to get all my dishes done, some laundry and tidy up around here, that alone feels much better.
The epo actually gave me no trouble, no side effects that I can see. No epo this week either and I think I'm in for a doctor war. My trial NP is off on vacation so I have another nurse in her place that is very by the book and she says "Dr. H. doesn't like using eprex, there are alot of side effects...." and I told her that I haven't had ANY side effects from it - she says she's never treated anyone with both eprex and neupogen - how can that be? - she's the main research doc on this trial. She has been physically absent and I've never met her so it's been another doctor I really like managing the bulk of my care so I'm lucky because I doubt she would have given me the eprex to bring up my hemoglobin the way my other doc has.
I'm on my fourth week of interferon reduction and I'm going to have to have a little chat about that too. And so it goes.
On the whole, doing okay. I hope things are well with you.
Well, it's not the side effects of Procrit that pose the problem. It is the increased risk of stroke that can occur if you continue it after your hemaglobin gets back in the low-normal range. I have also experienced no ill iffects from the Procrit (Epogen).
Hello! How's it going? Feeling a bit better now I hope....I just had a chat with my Endo who ordered more labs...it seems, the direction my thyroid is going, that within a few months, I may need no meds at all to keep it stable! My body is recovering nicely from the treatment (3 weeks post now!) and I'm feeling great!!!! I'm hoping the best for you and this teeny bit of encouraging news will help...((((((((((((HUGZ)))))))))) ~Melinda
Hi Melinda, your timing is SO good .. I saw the endo yesterday and I go in for the test this Wednesday and Thursday - two tests to get the results, is that what you had as well? This is alot faster than Canadian medicine usually works and it's making me slightly nervous. I have to call my doc and get a copy of that test.
I'm feeling really good the last few days though and I haven't felt that good in quite some time. So we shall see how things go. The shakes are gone, other symptoms that I now know are thyroid and wrote off to simply tx are there but then that's expected until this all sorts out. I'm just more aware now. Feeling good is a really nice bonus.
I'm so glad to know that things are working out for you .. yes it IS encouraging to hear that and especially right now. Terrific news and thank you for sharing that!
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