UPDATE: I'm tired all the time. What could be up?

amyjoy18 · July 2014

I've been exhausted all the time for the past few months. So much so that I decided not to take a summer class in the second session. Several nights a week I end up crashing as soon as the kids are in bed at 8:00 or 8:30 and I sleep like a rock through morning. When I wake up I'm still tired--like get a bath because I'm too tired to stand and then crawl back in bed for just a few more minutes tired. I've almost completely quit exercising except short 20 minute walks because 1. I've had some Achilles tendonitis issues in both ankles 2. exercising for any longer or at a higher intensity would cause me to completely crash for several days afterwards

I've been through a barrage of tests including vitamin deficiencies, anemia, thyroid, hormone levels, etc. which have all come back normal. The last round of tests came back with slightly elevated cortisol levels, so I just finished another test for that that I'm awaiting results for. If this one comes back normal I'm going to flip my lid--because the way I'm feeling is not normal. Something is wrong.

Anyone been through a bout of something similar? Anything I should be asking my doctor about?

So..got my results of the Cortisol/adrenal function tests. Normal.

UPDATE:

Dr. is attributing all of my symptoms to Mirena (which I've had for 2 years.) WTF.

gwennythepooh · July 2014

Oh man, I was going to suggest being tested for thyroid/vitamin deficiencies (I was tested for those earlier this year - I feel ya on the tired) - but it sounds like those have been ruled out. I hope they can get to the bottom of it soon!

Luckystar2 · July 2014

Do you have your actual results? Definitely get your thyroid numbers. "Normal" may not be normal. I was brushed off in college because my #s were normal and I was sleeping 12 hours at night and still tired!! I do have a thyroid problem and was eventually put on meds. The range was redefined a few years ago and I would have been out of range back when originally tested if that had been the range. Even with the new range I've seen varied ranges...some that are still too high. And regardless of a range...there is what is normal and good for you. I feel best when my TSH is really low and bordering hyper (I am hypo).

Luckystar2 · July 2014

Have you been tested for mono and Lyme disease? I assume you were tested for anemia and vitamin D?

What about allergies? Dh and I both get pretty exhausted during our high allergy seasons.

Do you have any other symptoms?

I have been battling some exhaustion on and off the last year and have been pretty frustrated so I know how you feel. My thyroid levels are fine so my dose of meds is good. I have been dealing with possible rheumatoid arthritis the last 3 years but that seems under control. My dd's have tested for a bunch of things without really finding anything significant. Last summer was really bad but it did improve some.

egpitt22 · July 2014

I was going to ask about the mono and Lyme disease, too. Did they test for those?

amyjoy18 · July 2014

I don't have my actual results, but I will request them. Vitamin D and Anemia were part of the first rounds of testing and those came back fine. Mono and Lyme disease were not part of the testing, but are good suggestions.

Luckystar2 · July 2014

amyjoy18 said:
I don't have my actual results, but I will request them. Vitamin D and Anemia were part of the first rounds of testing and those came back fine. Mono and Lyme disease were not part of the testing, but are good suggestions.

When you have your thyroid numbers if you don't mind posting I can look at them. I've done tons of research on thyroid stuff. I've been on meds for 12 years and it certainly made a difference. The only reason I was put on meds was because my thyroid was enlarged and had nodules so they thought meds would shrink it...didn't actually think I was hypothyroid. But I actually have antibodies which means I have autoimmune thyroiditis (basically my body destroys my thyroid). I'd suggest having the antibody test too depending on your other #s. Anyways meds helped my symptoms and I started seeing a dr who believed my TSH was too high even in range.

I would definitely see about mono and Lyme. We know somebody who just had mono and one of the moms at dd's soccer was just talking about somebody who was just diagnosed with Lyme.

northhillsbride · July 2014

Did docs test / rule out sleep apnea? While you may be sleeping through the night, you might not be getting enough REM sleep. I would ask about doing a sleep test - I know UPMC Cranberry has a sleep center, as I'm sure many other hospitals throughout the region have as well.

Good luck!

Meghan&Rich · July 2014

What vitamin deficiences were you tested for? A friend recently found that she had a B12 deficiency. She had other symptoms along with her exhaustion, but it seemed to take forever to get to the diagnosis of B12 deficiency. I'm not sure if that's something they initially test for, or if you have to request it.

I know you said you are deep sleeping, but if your tests don't show anything, maybe a sleep study might uncover something?

Has your diet changed at all? Are you drinking enough water?

kris356 · July 2014

I was going to ask about B12, Lyme and Mono. I also agree that if all that comes back negative definitely look into having a sleep study done.

Luckystar2 · July 2014

Another ditto to B12.
I'm looking at mine and last year when I was exhausted they did a basic metabolic panel, CBC with differential, magnesium, TSH, T3 and T4, vitamin B12 and vitamin D.

I was annoyed they didn't test for mono/Lyme either but since things did improve I didn't push it...should have though before things improved.

amyjoy18 · July 2014

Got my lab numbers and am trying to decipher what is what.
TSH Reflex- 2.970

Which looks to be middle of the road. The normal is listed as .270-4.2

Anything else you want to see that would be telling?

Luckystar2 · July 2014

amyjoy18 said:
Got my lab numbers and am trying to decipher what is what.
TSH Reflex- 2.970

Which looks to be middle of the road. The normal is listed as .270-4.2

Anything else you want to see that would be telling?

I was symptomatic when my TSH was 3 something. The range was like up to 6 at that time. The recommendations have kind of gone back and forth. For awhile it was recommended that the range be up to 3. I think one major lab was using 2.5 as the upper limit. Then more studies and changes and the range went back up. I think most are in the 4s now. But that's all to say that there has been some back and forth on this. It's worth retesting at some point if you don't find any other causes.

Did they run a free T4 test? If not I would request that to get a better picture.

They could also test for thyroid antibodies and T3 but those might be harder to get the dr to do.

Luckystar2 · July 2014

Also wanted to add that a TSH bordering 3 would be higher than I would want for myself. I feel best around 1. My endocrinologist also agreed that he liked his patients between 1 and 2. If I was over that but still within range and having symptoms my meds were increased (even if just a little).

amyjoy18 · July 2014

Luckystar2 said:

Got my lab numbers and am trying to decipher what is what.
TSH Reflex- 2.970

Which looks to be middle of the road. The normal is listed as .270-4.2

Anything else you want to see that would be telling?
I was symptomatic when my TSH was 3 something. The range was like up to 6 at that time. The recommendations have kind of gone back and forth. For awhile it was recommended that the range be up to 3. I think one major lab was using 2.5 as the upper limit. Then more studies and changes and the range went back up. I think most are in the 4s now. But that's all to say that there has been some back and forth on this. It's worth retesting at some point if you don't find any other causes. Did they run a free T4 test? If not I would request that to get a better picture. They could also test for thyroid antibodies and T3 but those might be harder to get the dr to do.

No, I don't think they did a T4 test. I'll push for that. Regardless of what the cortisol comes back at I think they should do that. From what I've ready they go hand and hand.

scubagirl81 · July 2014

My TSH has to be around 1 or a little below too, or I feel like a zombie. I also was diagnosed with B12 deficiency recently and getting that fixed is a huge help. It's kind of the same as the thyroid thing for me in that even if I'm in the normal range, I only feel right when my numbers are at a certain level (in the case of the B12 it needs to be on the high end for me).

I hope you get some answers! Sometimes it's helpful to try and find a doctor that will treat your symptoms rather than your lab reports.

mcmfan · July 2014

I started wearing a Fitbit and it made me realize that I only sleep for about 3 hours a night even though I thought I was sleeping. My doctor set me up for a sleep study. So maybe a cheap way to quickly see about the sleep is buy or borrow a Fitbit.

amyjoy18 · August 2014

UPDATE:

Dr. is attributing all of my symptoms to Mirena (which I've had for 2 years.) WTF

kris356 · August 2014

amyjoy18 said:

UPDATE:

Dr. is attributing all of my symptoms to Mirena (which I've had for 2 years.) WTF

Time to find a new doctor.

scubagirl81 · August 2014

I don't think that's totally crazy. I was on Depo for a long time before it started making me crazy, around 3 years, but once I started having side effects, it was bad. So I wouldn't rule it out, especially if you can get removed and replaced later if it doesn't make a difference or replaced with something like Paragaurd for free with your insurance.

gwennythepooh · August 2014

scubagirl81 said:

I don't think that's totally crazy. I was on Depo for a long time before it started making me crazy, around 3 years, but once I started having side effects, it was bad. So I wouldn't rule it out, especially if you can get removed and replaced later if it doesn't make a difference or replaced with something like Paragaurd for free with your insurance.

I agree - I've heard that the symptoms don't hit you right away all the time. Bummer that this was what it ended up being, though:/

scubagirl81 · August 2014

For me, the longer I was on birth control, the more sensitive I would become to it, I guess as it would build up in my body. About 3 months after I got my Paraguard and quit hormonal bc I felt like a completely different person.

amyjoy18 · August 2014

scubagirl81 said:

For me, the longer I was on birth control, the more sensitive I would become to it, I guess as it would build up in my body. About 3 months after I got my Paraguard and quit hormonal bc I felt like a completely different person.

I hope you ladies are right. I just want to feel better. I contemplated getting the Paraguard in lieu of the Mirena, but I had been having steadily increasing heavy periods, and the doctor was concerned Paraguard would make it worse.

Meghan&Rich · August 2014

Is there any treatment for that or do you just need to deal with it? I don't think it would hurt to get a second opinion.

amyjoy18 · August 2014

Meghan&Rich said:

Is there any treatment for that or do you just need to deal with it? I don't think it would hurt to get a second opinion.

Treatment for the heavy periods? Mirena was the treatment for the heavy periods. :-( Prior to getting the Mirena I went through all sorts of tests and ultrasounds to determine what was up and they couldn't come up with anything (although I have read that heavy or crazy periods can be a symptom of hypothyroidism and I was tested at that time).

I've read some crazy stuff about Mirena (some of which makes sense, but some that just sounds crazy), but part of me feels like this was my current doc throwing in the towel. At this point I feel like if there is a 1% chance that it will work, I'm willing to try, and if it doesn't, then at least it will have been ruled out.

If I were to get a second opinion, what type of doc should I go to? I feel like no one is really looking at the whole picture.

kris356 · August 2014

I guess I feel the same as you, your doctor doesn't know so it has to be this.

If you really feel it is thyroid related, maybe go to the endocrinologist for a second opinion. Especially since you had possible symptoms of a thyroid issue before you got the Mirena

MrsAmers · August 2014

kris356 said:
I guess I feel the same as you, your doctor doesn't know so it has to be this.

If you really feel it is thyroid related, maybe go to the endocrinologist for a second opinion. Especially since you had possible symptoms of a thyroid issue before you got the Mirena

Ditto all of this.

Meghan&Rich · August 2014

amyjoy18 said:

Meghan&Rich said:

Is there any treatment for that or do you just need to deal with it? I don't think it would hurt to get a second opinion.

Treatment for the heavy periods? Mirena was the treatment for the heavy periods. :-( Prior to getting the Mirena I went through all sorts of tests and ultrasounds to determine what was up and they couldn't come up with anything (although I have read that heavy or crazy periods can be a symptom of hypothyroidism and I was tested at that time).

I've read some crazy stuff about Mirena (some of which makes sense, but some that just sounds crazy), but part of me feels like this was my current doc throwing in the towel. At this point I feel like if there is a 1% chance that it will work, I'm willing to try, and if it doesn't, then at least it will have been ruled out.

If I were to get a second opinion, what type of doc should I go to? I feel like no one is really looking at the whole picture.

I meant treatment for your symptoms that your Dr is attributing to the mirena. If it is the mirena, is there anything you can do to help the side effects? I would maybe give your ob/gyn a call, or an endocrinologist.

Luckystar2 · August 2014

This is your PCP? Is suggest talking to your Obgyn and or finding a different Pcp if you're not happy. It can take time to get into an endocrinologist and depending on your insurance would you need a referral? I loved my endo but it was about a 3-4 month wait. You could schedule something now and in the meantime see somebody else.

I've had to switch pcp's a few times because I've been disappointed in how I was treated and cared for.

Oh and I had really long irregular and heavy cycles. I definitely felt like my thyroid issues played into that.

lala5507 · August 2014

I agree that an endocrinologist will look at your thyroids tests/results much differently than a pcp. I've been going to an endocrinologist for years for Hashimoto's. The list of things he checks when I get my blood work is much more extensive than when dh had is pcp check his thyroid.

mcmfan · August 2014

If you switch PCP consider looking for a DO rather than an MD. DOs are trained to look more at the whole picture. Hope you find out what is wrong soon, health issues are so stressful and you are already tired! Hang in there!

UPDATE: I'm tired all the time. What could be up?

Re: UPDATE: I'm tired all the time. What could be up?

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