bone tired -- any experiences?

[tinkntraining]

Some days, it takes every ounce of strength I have to just pull myself out of bed. My knees ache. I can't think clearly, I feel like I've been hit with the flu that never got better. My hair is falling out by the clumps.
I'm not just tired -- I'm absolutely exhausted. Some days, even lifting my arms in the air to blow dry or put my sweater on, feels like a major to-do. Other days, I am able to plug away, even though I haven't felt "normal" for awhile.
I'm scheduled for a follow-up appointment with my PCP tomorrow. So far, I've tested negative for Lyme's Disease and Rocky Mt. Spotted Fever. My CBC's are "normal". I do have hypothyroidism, but my latest TSH results were normal. Should I be asking for a referral to see a specialist of some kind? What can I expect from the second appointment?

Thanks for all your help.

I'm not looking for medical advice, just experiences from others who's situation may be similar, and to make sure I'm asking all the right questions.

 

[curious3069]

This has probably already been checked, but have they tested your iron levels? When I was severely anemic, it was just like you described, right down to the mental fog, complete exhaustion and hair loss.

 

[curious3069]

and let me add that I hope you find something out, that level of exhaustion is horrible....good luck!!!!!

 

[Disney Doll]

See an endocrinologist.
Thyroid
Low iron
Vitamin D deficiency

come to my mind immediately.

Could also be other hormonal imbalances....an endocrinologist seems to be the way to go.

 

[Christine]

Further pursue your thyroid numbers. Also, as the poster said, have them run a ferritin which is a measure of your iron stores. My CBC was normal too but my ferritin was almost non-existant. It will make you feel REALLY bad, lose hair, etc.

 

[cabmom]

Lack of vitamin D and protein possibly.

 

[nmmom95]

I've been tired from both anemia and an autoimmune. If your blood tests are normal, try a rheumatologist. I was treated for Lyme disease, even though I tested negative. I felt like I had the flu that never got better. I basically felt everything you describe. It was an autoimmune.

 

[tinkntraining]

Thanks, everyone for your replies and suggestions.
I think my PCP discussed a referral to an endocrinologist or a rheumologist (but didn't mention what diseases they treated). My friend also suggested more tests for the thyroid, saying the TSH wasn't enough info, so I guess I need to see a more specialized doctor and hope they test me for the right things.

nmmom95: What autoimmune disease were you diagnosed with? Are you better now? I just can't imagine what it must be like to live with this fatigue for years...these past few months have been really hard.

I take care of my mom, who has dementia and a seizure disorder and it's getting so hard to keep up with my responsibilities. I need to feel better!

Any other suggestions/experiences would really be appreciated.

 

[3prettyprincesses]

You sound like I used to be. I was diagnosed as hypothyroid (Hashimoto's hypothyroidism) and severe vitamin d deficiency. It seems they go hand in hand, the low thyroid and low vit. d.

Have not only your TSH checked but also thyroid antibodies, t3 and t4 (these are the actual thyroid hormones secreted by your thyroid) and your vit. d.

Having these issues myself, I could hardly function. I was depressed, exhausted, hair falling out, freezing cold hands and feet and had trouble concentrating. It felt like my whole body was in slow motion and I was miserable. My advice is to see an endocrinologist, not just an internal dr. A good endocrinologist will know the current guidelines for your TSH. They used to say anything above a TSH of 5 was hypothryoidism but now they know that anything above a 3 will produce symptoms. My TSH was 8 and I felt like the walking dead! Good luck!!

 

[SingingMUA]

You should have your doc investigate the possibility of Lupus. The symptoms you describe sound a lot like symptoms of Lupus. I was diagnosed about 2 years ago, and while it can sound scary, it IS a manageable disease. If you have any questions about Lupus, please feel free to ask.

Also, there are other autoimmune diseases that could cause similar symptoms. Don't be too frightened by what you might read. Again, Lupus (and other autoimmune diseases) can be controlled, and while some stuff you read by googling can sound scary, it's not always so intense. Everyone's disease activity is different, and all can be managed relatively well by medicines.

 

[claudia]

TSH does not tell the whole story....go to an endocronologist and have them run Free T4, Free T3 and run a test for antibodies to check for Hashimoto's.

 

[Mermaid02]

Further pursue your thyroid numbers. Also, as the poster said, have them run a ferritin which is a measure of your iron stores. My CBC was normal too but my ferritin was almost non-existant. It will make you feel REALLY bad, lose hair, etc.

I have hideousely low iron stores too.... have had 2 iv iron infusions and thinking I need another....

 

[nmmom95]

nmmom95: What autoimmune disease were you diagnosed with? Are you better now? I just can't imagine what it must be like to live with this fatigue for years...these past few months have been really hard.

I take care of my mom, who has dementia and a seizure disorder and it's getting so hard to keep up with my responsibilities. I need to feel better!

Any other suggestions/experiences would really be appreciated.

My disease is a rare form of vasculitis called Wegener's granulamatosis. I went into remission within 3 months of treatment. My disease was missed for a long time, so I ended up with kidney failure, as well. I am an extreme case, but I am doing well. Keep going until you get a diagnosis, and my prayers will be with you.

 

[dakcp2001]

I would recommend asking to go to an Endocrinologist. My PCP called my thyroid "normal" until I was almost bald and had gained 50 lbs, and was clearly showing all symptoms of hypothyroid. My endo told me she would have treated me years ago with my numbers. My PCP was following super old school "normal" ranges and only did a TSH test. And there are more tests avail then the old TSH test, and you may need an Endo to pursue them.


Here is a quick explanation of why I was not treated properly the first few years:

With your thyroid, there are two types of test that need to be run to determine your t3 and t4, and the TSH will only show "off" of you are not making enough t4. T4 is converted to t3 in your body (usable thyroid hormone). SO you may test normal for your TSH test, and your body may be producing enough t4, but if your body can not properly USE or convert the t4 into T3 then you will have symptoms of hypothyroidism.

For people with low thyroid that still feel the symptoms even though the TSH is normal, they may need a t3 medication (Cytomel or Armour) in addition to the Synthroid or Levoxyl (t4)

 

[kimber79]

Oh my goodness....it is SO nice to see this. I have battled with this for many year's ~ this past year has been FAR worse than ever though. I just hate going to my PCP as I always get the same result: everything look's good, all your level's are "in normal range". Severe fatigue is something I have had to just become accustomed to living with (if that is possible!) as I am "in normal range"!

 

[golfgal]

I agree with the others, it sounds very much like Thyroid. I am curious what your doctor thinks is "normal". Get to an endo, now. Honestly, if your thyroid is as bad as it sound you could die from this.

 

[funnygarcia]

Fibromyalgia has similar symptoms, it won't show up on blood tests and is typically diagnosed after ruling out other conditions.

 

[NatashaDisneyCM]

hey, that is me! I live like this daily and have for many, many, years....
I have fibro, osteoarthritis in every joint in my body and I have chrons and am anemic.
I just deal....I do enjoy tanning thou, helps temporarily. but then I will get melanoma. so , again I just deal. lol
or shop for $$ pocketbooks! ( have to have some humor)

 

[Hoodie]

Ask for the doc to bump up your thyroid medication and re-test. The normal range for TSH is ridiculously wide. Ask for your numbers for the past several tests. I was really feeling it, got re-tested and was "normal". I asked for all my previous tests and sure enough, my latest number was off 1 full point from where the other tests were. Still in the "normal" range but not normal for me! Two weeks on the increase and I felt SO much better. The re-test put me back at the level I had been previously.


edited to add: ask for a full thyroid screen. I've been on thyroid meds for years and my TSH has never been out of the normal range. My T3 was off the charts though. The other factors masked it.

 

[golfgal]

Ask for the doc to bump up your thyroid medication and re-test. The normal range for TSH is ridiculously wide. Ask for your numbers for the past several tests. I was really feeling it, got re-tested and was "normal". I asked for all my previous tests and sure enough, my latest number was off 1 full point from where the other tests were. Still in the "normal" range but not normal for me! Two weeks on the increase and I felt SO much better. The re-test put me back at the level I had been previously.


edited to add: ask for a full thyroid screen. I've been on thyroid meds for years and my TSH has never been out of the normal range. My T3 was off the charts though. The other factors masked it.

The normal range for TSH is only .3-3 . That isn't all that wide of a range considering when they found my thyroid issue my TSH was at 95.