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Sarah2010
06-20-2010, 03:19 PM
hello again.
So on top of my other lovely SLE symptoms, I have been extremely extremely tired and WEAK lately. I am exhausted from walking up and down the stairs, when I pick up my glass of water, it feels like it weighs 100lbs!! I feel like I could just turn into a little puddle on the ground. i was diagnosed with hypothyroidism 2 weeks ago and have been taking synthroid, I thought it would help the tired ness and being lethargic, but i'm still sooooo weak. I have been like this for a few weeks, just so tired that after waking up at 8, i'm taking a nap by noon, and just barley sticking it out until a 9:30, 10:00 bed time!! Even when Im sitting or laying down, my body feels heavy..its a weird feeling to feel like your in slow motion and weigh hundreds of pounds! Not to mention, im hardly getting anything done these days. Any suggestions on what this is, or how to overcome and get a bit stronger? Thanks buddys.
-Sarah

Hillbillie
06-20-2010, 08:15 PM
Sarah,
I have hypothyroidism and SLE. I know that feeling all too well. Usually it happens when my thryroid meds need to be raised. I tell my husband when I feel like that is if I didn't have to go potty once in a while I could just sit/lie there all day and not move. It is an awful feeling. Maybe the meds need a little longer to work. Call your doctor's office just in case but it may just be that the meds aren't working well yet. Talk to the nurse and she should be able to talk to you without having to go there. My Dr's nurse has helped me many times. Rest would be the only advice other than that. Your body is needing time to adjust to the changes. Rest if it takes three naps a day and there is any way possible then get the rest you need. Hang in there. I hope you wake up tomorrow feeling better. Once they get your thyroid levels back up you should be feeling much better. Hang on there is a brighter day coming!

Sarah2010
06-21-2010, 07:10 AM
Thank u, thank u, thank u!!! lol.. It is good to hear that you understand and have delt with this issue. Im only on 75mg of synthroid for about 2 weeks now. I know that synthroid takes a little while to work, so im just patiently waiting. My TSH or THS or whatever was 150, so I know that it was pretty outta whack and will take some time to come back down. Whew..im just glad that im not dying..lol..i seriously was getting scared because im so weak!! Also Hillbillie, do you have any pain that goes along with the hypothyroidism joint, muscle etc? I feel like I have additional pain on top of the SLE right now but it feels like muscle aches... I was wondering if that was from the hypothyroidism or a side effect from the synthroid?? All i know is that i'm in more pain than I have been in a long time and it's wearing me down and bumming me out!! Thanks again :)
-Sarah

Dar
06-21-2010, 10:49 AM
Also, another thing to consider that I totally missed because I have other lupus problems that could've explained it was anemia. Most people with lupus will have it at one time or another.

Anyway, feel better soon.

Nonna
06-21-2010, 11:12 AM
anemia and hypothyroidism are both related to this symptom. You need to get a blood test soon
nonna

Sarah2010
06-21-2010, 06:03 PM
nonna,
Wile lying here in weakness and misery, I was starting to do research on Anemia, Vit. D deficincy, and also b-12. I was thinking that maybe that could be contributing to my symptoms of pain and weakness...Arn't those deficincys listed above common in autoimmune disease? Also if anyone has had any of the deficincies, what were your symptoms????? Plese, I need some guidence!!

Hillbillie
06-21-2010, 08:36 PM
Sarah,
I knew I was going to die, Got prayed up and even wrote letters to my loved ones. I did eventually get better. My joints still hurt and muscles as well but I'm getting a little better at handling things and with my thyroid levels up I can get up and move again. I don't know if the pain is associated with the thyroid or not. I remember aching like the flu kind of. I have hurt so much with Lupus its hard to say.
Hope you are feeling better real soon. I have had anemia. I cook in cast iron now to help with the iron. I don't want to take a supplement for that, it'll clog up the plumbing! You hang on and if you don't feel better in a few days call the doc. Best wishes, BJ

Sarah2010
06-22-2010, 06:29 AM
Hillbillie,
So when u said that you eventually got better, how long did it take?? lol.I feel like I cant go another day with this horrible aching feeling!!
It does feel like the flu, aching everywhere!!!..and actually other than my hands and wrists, my joints dont feel too bad. That is why I'm concerned..its different kindof pain than I'm used to. My mom called the Dr. and i'm once again, headding in in a few hrs, to get more blood test done. i'll let u know how it goes. Thanks again for your help :)..
-Sarah

Sarah2010
06-22-2010, 03:57 PM
FYi, went to the dr today. He ordered a ton of blood test. The nurse stuck me a few times and couldnt get a vein...UGH!!! i got frustrated, and decided to go home and go back tom for the draw...so no progress YET!!! Still in bed feeling like crap o la!!

jmail
06-24-2010, 03:21 PM
Oh my... I *hate* it when a blood draw goes bad... I feel for you, Sarah2010! FWIW, I took me at least 6 months' worth of backing and forthing between the doc, the lab and back again, in order to get my levels even close to the low-end of "normal" (what is "normal" anyway??... tic). It was a gradual improvement. Anyway, in the meantime, my arthritic-like symptoms were very severe. As Hillbillie mentioned, I was sure I was going to die. I thought surely I had cancer again... Thankfully (I think... tic again), it's "just" lupus...

Sarah2010
06-24-2010, 04:45 PM
Jmail,
Lol..I am not good with the blood draw in general,it makes me feel a bit woozie, and now have two bruised up arms to show for it, but atleast its done!! i got the results today. The sythroid is starting to work, thankfully...my vitimin levels are good. BUT..My disease is progressing. all of my pain and suffering is from not treating my lupus properly. Im going to take the prednisone tom, and wait another day or two to start tohe plaqulnil, or wait to talk to the dr, about another option, as the plaqulnil makes me sick bad, "trots" and vomiting on top of an allready weakened body is NOT my idea of a good time. Once again, I cant thank u all enough for your replies, with out u guys, I wouldnt know where to turn. Thanks!!
-Sarah

Sarah2010
06-24-2010, 04:52 PM
Wait a second, I was just reading about prednisone online, and it said do not take it if you have a thyroid problem!??! What the heck!?? Im taking synthroid, should I not take the prednisone?? What is the reason behind this? Anyone out there on synthroid and prednisone??
-Sarah

the wingless one
06-24-2010, 09:05 PM
Sorry I can't give much advice about the thyroid problems but I'm with Dar on the anemia. I am borderline severely anemic right now (docs say if it gets any lower I will need a transfusion but hoping that putting me back on the max of prednisone will bring my levels back up to a safer number) and I am having HORRIBLE fatigue. Yesterday I stayed at the office for an extra hour and a half just trying to will myself to get up out of my chair - I did NOT want to be at the office (I wanted to be at home taking a nap!) but I just couldn't get up. It's actually gotten to the point where I'm having trouble catching my breath sometimes. How did your hemoglobin/hematocrit levels look on your CBC results? Glad to hear your thyroid meds seem to be working though, I hope they have you feeling better soon! Prednisone definitely always does the trick for my joint pains but I have never had thyroid issues so I don't know how it interacts with those meds...

Angel Oliver
06-25-2010, 05:01 AM
Hello Sarah,

Yes me too.You will find as others post so many of us have many same symtpoms.But you keep fighting and posting as this will help you gain confidence,just the fact that there are others out there who understand.Thats why i pop in here.Such lovely,caring and understanding people here.So welcome my friend.
love
Amanda.xxxxxx

Lady_tsuguri
07-07-2010, 05:44 PM
Sarah! I have such horrible muscle weakness and fatigue that I've been dealing with for months, and I've been at such a loss!!! It's so nice to know I'm not the only one. ]:

My rheumatologist is currently trying to figure out whats going on.

I would LOVE to know what it is cause it's so horrible, when I'm at work I can't take it, I'm so weak but I can't stop because I'm at work and they'd think I was lazy. I thought maybe it was my lupus, but I'm not positive if Lupus causes Muscle weakness? It's so mind boggling, I'll be out with my mom, and she'll have to put me in a wheelchair the weakness is so bad.

If you have any idea's what it could be, or you were diagnosed, please tell me!

Feel better hun ]: I know how you feel.

jmail
07-08-2010, 05:47 PM
Hey Sarah2010, I thought I'd mentioned it in my 1st reply, but apparently not... (my brain, or the computer's?... tic). Anyway, besides the thyroid and anemia, there's also the adrenal glands that can be impacted by the effects of Lupus. If you go very low on them, you get very tired very easily, but without the almost crippling body aches of the thyroid when it goes way low... The balance of thangs in your bod get way out of whack over time with this stuff. My school counselors way back when always did say I was off balance...

Ali_R
07-11-2010, 04:27 PM
Hi Sarah,

I know this is a little late, if your TSH is 150 that is WAY out there and it is no surprise you are in negative energy mode. Synthroid is going to take 4-6 wks before it makes any difference. I would guess w/ a TSH that high you are going to be upping that dose. I had an initial TSH of 148 and it took 9 months before they could get it down into range.

TSH is thyroid stimulating hormone, what it is is how loud your pituitary is screaming at your thyroid to get going! It is an inverse number. The slower your thyroid, the more your pituitary "yells" at it to get to work. A normal TSH is typically in the 0.5-5.0 range. 150 is pretty rare, my 148 was the second highest my internest had seen in her career.

I can't remember what they started me on, I am on 300mcg (and I would bet you are on 75mcg not mg) now. I did start really low (maybe 75 mcg also?) and I couldn't tolerate a very high increase at a time.

The funny thing, when my thyroid is really slow and I am so exhausted, I get insomnia! It makes NO sense. Terrible muscle cramps. Unbelievably irritable. You feel like your body is attached to the ground with rubber bands and it is awful to have to do anything. Sometimes you look at the ground and just KNOW you could lay down there in the gravel and be FINE! ANYTHING to keep from having to keep moving.

Hang in there, I truly hope it is your thyroid sapping all of your strength.

Take care,
Ali

Ali_R
07-11-2010, 04:31 PM
Jmail,

Have you had them check your adrenals? They have never mentioned that to me but I have a bad thyroid (in check these days) and anemia that often requires infusions (but it is just barely low right now) but they don't ever mention the adrenals. Is that something that is mainstream/widely accepted?

TIA,
Ali

Sarah2010
07-11-2010, 05:58 PM
Hey ALi,
Just commenting on the thyroid issue... I know 150 is totally outta whack!! My dr looked at my blood test results when it was diagnosed and literaly said "holy shit" out loud!!! He said he'd never seen it that high!! I am feeling better since being on 75 mg of synthroid for all most 4 weeks now. I had my THS taken today when I was in the ER, and its down to 20, so...its getting better..but not perfect yet.
-Sarah

Hillbillie
07-11-2010, 07:38 PM
Hi Sarah,
I do take synthroid and prednisone. I too had read that you should not take both but I am on so much medication for all my conditions that some are bound to mess with the others. The synthroid and the prednisone make me feel better so I am taking them. I have been on them both for nearly a year with no noticable problems. I am glad the medication is working. Just hang in there and hopefully you will be better soon! Take care, Hillbillie

jmail
07-12-2010, 06:03 PM
I'm on both, also (185 synthroid, 20 cytomel for thyroid; 5 prednisone) with no "ill" effects yet. I definitely can breath better and the joint inflamation is down now, since I've been on the steroid regularly. Your thyroid can affect blood pressure & blood sugar levels, too...

Nonna
07-13-2010, 10:54 AM
As to the muscle cramps you all are talking about. They come from the low calcium levels in your blood. If your thyroid is under functioning, chances are so is your parathyroid. That controls the calcium levels in the blood. That causes pain and cramping in your muscles. If your levels get too low you could end up in muscle spasm that are as severe as a seizure. Vitamin D also comes in here somewhere, I haven't figured that one out yet. Find a good endocrinologist. I've been dealing with this since I was 27. It's like the Lupus; it's not fun. I missed my synthyroid for over a week due to issues with my endo's staff. I'm exhausted, no strength at all. It will take me weeks to get my energy and strength going again.
Good Luck

nonna

jmail
07-13-2010, 12:47 PM
I'd forgotten about that calcium/magnesium relationship. The vitamin D "leaches" somehow or other, and it helps in the absorbtion of other minerals, etc. to be up to level or above with it. You need it for other things, too (?? blank brain today), and can't get out in the sun to make your own, so supplements it is...

SandyR
07-13-2010, 02:59 PM
FYi, went to the dr today. He ordered a ton of blood test. The nurse stuck me a few times and couldnt get a vein...UGH!!! i got frustrated, and decided to go home and go back tom for the draw...so no progress YET!!! Still in bed feeling like crap o la!!

I have *VERY* bad veins. The invisible kind that play hide and seek with needles mainly. I read about a year ago that if you drink water - not ice cold - for at least the hour before your blood draw your veins are easier to find. I tried it - IT WORKS!!!!! I am not kidding when I tell you that before this trick the only people who could stick me the first time were the ones who worked at the blood donor center.

SandyR
07-13-2010, 03:05 PM
http://forum.wehavelupus.com/showthread.php?8388-Thyroid-References&highlight=thyroid

Also - I have been going through thyroid testing this year too and started a thread with some information for others who are also overwhelmed by all the thyroid info out there.