Appointment with new rheumy tomorrow!

[DebbiK]

Ok I've got my list started with alot of questions for her tomorrow. At the top of the list is the fatigue and I'm going to work my way down. I hope they can finally give me a definite diagnosis along with the primary Sjogrens so that I can start some treatment.

Deb

[lynnmarie219]

Deb,

Good luck at your appointment tomorrow!

Its a great idea to have your list ready....I always have 2 pieces of paper with me when I go to my doctors......one is my list of questions/concerns and the other is my list of current medications!


Let us know how it goes!

[DebbiK]

Thanks LynnMarie, the only thing she did was confirm concretely that I did have Sjogrens when everyone else has been saying I possibly have it. Took a lot of bloodwork to make sure things haven't changed and to check Vit D levels then told me I don't get enough sleep that's why I'm so tired all of the time. She kept trying to push sleeping pills for a few months so that I'd learn to sleep 8 hrs again and told her no I would do it on my own. So now just waiting for bloodwork results.

Deb

[Annj5]

Hi Deb,

Hmm. Sleep disturbances can definitely cause fatigue, but for me, that was not the cause. Fatigue was my first and still is my most significant problem, and my rheumy has said that it is definitely related to autoimmune disease. When my disease is managed well, my fatigue is less. Not absent, but much better.

Good luck figuring this out!

[lynnmarie219]

Well you got a confirmation......one step at a time!

When the blood work comes back do you have a follow up appointment? Will she think about prescribing any medication for you like Plaquenil which is usually the first med ordered for us with Sjogrens? This med may also help with the pain and the fatigue as well as slowing down any progression of the disease.

Maybe a sleep study is in order as well to see if there are any other problems....just a thought!

Keep us posted!

[DebbiK]

Hi LynneMarie,

I was diagnosed 3-4 years ago with Sjogrens but it was always a "probably have it" type statement. I've been on Plaquenil never did anything for me. I was put on sulfasalazine and it made my joints hurt more, voltaren messed with my stomach so have refused everything but the restasis for my eyes. Now just waiting to see what my new tests come up with.

Deb

[irish]

I am convinced(especially after reading information that seems to agree with me ) that some of the fatigue with sjogrens and autoimmune disease is from the high speed at which our body is running in order to kill us off. I have always had sleep issues and when I really got severely ill my sleep was 3 hours or so sleep at night. I kept telling them that when they figured out what I had and treated it and made me feel better I would sleep better. I still maintain that there is a lot of truth to this. Irish

[Patze]

I'm with you Irish, I too thought that my body was trying to do me in early!   I know, smart alack that I am (it's Friday, cut me some slack ).

I used to sleep like a rock, the only thing that used to wake me up was my kidlet crying/or moving around the house at night (while she was young), I'd sleep through everything else.  I haven't slept like that in years, and I often wonder if I'll ever sleep like that again...heck, I'd be happy sleeping for 6 hours of really good sleep just two or three times a week would really do me well.

I also agree that if they would figure out what I have and treat that, my body too would be able to return to a normal state; well, maybe (a girl can hope ). 

Patze

[DebbiK]

Well the blood work came back and my SSA/ANA is "slightly positive" huh? Ok to me its either positive or negative. She did tell me I was very low on Vitamin D so now have to take 50,000 mg 1x a week for the next 3 months. In addition I was told that my TSH levels were normal. So ok pulled out my ones from last year and my TSH in 2006 was 1.0 and now its down to .93 but I'm supposed to be ok. I've contacted my dr for a serious heart to heart as if these are dropping it explains why I'm having some problems and its time to start taking me seriously. So thought I'd let everyone know what I've learned so far.

Deb

[Linda196]

Debbie, the normal range of TSH is 0.4-5 (although a number of endocrinologists acknowledge that an upper range of 4 is more realistic) so your values are normal, and they will fluctuate within that normal range on a daily basis, because thyroid production changes constantly based on the entire endocrine system fluctuation.

The inverse ration of TSH to thyroid function means that the lower the number of the TSH, the more thyroxine the thyroid is producing. A low value means hyperthyroidism, while a high value means hypo.

You may find the Vitamin D supplements give you some relief from a variety of symptoms, since Vit D deficiency can cause muscle pain, weakness, fatigue, osteoporosis, chronic pain similar to fibro, and immune system disruption. did your doctor make any suggestions about trying to get a bit of natural sun exposure daily? It's generally accepted that 10-15 minutes of unprotected exposure early in the day can boost the level of Vitamin D, but check with your doctor first, because sun sensitivity or any risk factors for skin cancer would rule this out.

The SSA/ ANA results may be given as titres, and they can show a mild positive result and not be considered clinically significant (especially in the case of the ANA), but as we know, it's possible to have extreme symptoms with no evidence of anti-SSA in the blood.

[DebbiK]

Thanks for your reply Linda, I'm out in the sun all of the time without sunscreen and still low on Vitamin D. I'm hoping that this helps with the fatigue as I was reading about that as well. With my thyroid being on the low end I've been having problems for years and no one would listen that I'm not feeling good. I understand about all of the normal ranges however when I look at my symptoms my body is acting like the tsh is very low including the weight issues which continue to get worse. LOL Our family tends to start to feel symptoms even when things are within the "normal" range. When my grandmother was alive I used to tease her about having passed this on to the family because if something was wrong rheumatically she would be the first to show it. I have an appointment with my GP next week to talk about this. 

Deb

[Linda196]

Actually Debbie, with your TSH where it is, and you are traditionally sensitive to levels, if anything you should be feeling signs of high thyroid.

The T4 and T3free are the tests that would drop for low thyroid. The TSH (thyroid secreting hormone) is a marker for how much thyroid your body needs...if more is needed (low thyroid) the amount of TSH climbs, showing that the body is calling for more. If the thyroid production goes up, the TSH drops, showing that the body doesn't need to demand more.