this is seriously destroying my life
August 8, 2017 10:43 AM   Subscribe

I've been suffering from chronic exhaustion for several months and at this point it's jeopardizing my career and my schooling. The doctors I have seen are basically doing this: ¯\_(ツ)_/¯ Please help me.

If you look through my question history you'll see that a similar thing happened to me a while back: chronic, debilitating exhaustion with no clear reason why. After going to the doctor and getting bloodwork and a urine test it became apparent that I was suffering from a very bad UTI that was somehow also symptomless save for the fatigue, and a short course of antibiotics fixed that.

Cut to now and it's happened again. I had more bloodwork done and another urine analysis. No UTI this time, and my vitamin B and D levels are normal. I was a little low on iron but was told that taking a multivitamin would alleviate that. I've been taking the multivitamin for three weeks no with no discernible difference in my fatigue.

The only thing of note in my bloodwork was that my white blood cells count was a bit high. The doctor had no explanation for why. I mean literally, she did this: ¯\_(ツ)_/¯

I've been tested for STI's and all came back negative.

I'm frustrated beyond belief. I cannot keep living like this. I barely can get out of bed in the morning and then when I do I almost immediately feel sleepy again after an hour. My brain is perpetually foggy and I can't concentrate on my work (I work from home) or my grad school applications, all of which are due in less than a month. I am missing deadlines and dopey in meetings.

I suffer from bipolar depression but it's well-managed with medication and this fatigue definitely does not feel like depression tiredness. I have PCOS that presents with insulin resistance so I am also on metformin. My A1C levels showed up normal on this last batch of bloodwork so it seems unlikely that this is a blood sugar issue. I'm not showing any physical symptoms of diabetes.

I get plenty of exercise - about an hour of walking everyday (more if I'm in the city for meetings) and weight lifting once or twice a week. My diet is mostly omnivorous. Protein-wise I eat a lot of lentils, eggs, some cheese, fish. I don't really eat chicken or pork. I am increasing the amount of red meat I eat on the off chance that this is somehow iron related.

I feel drained all the time and my face looks much paler than usual. It seems like a vitamin deficiency in that regard but the bloodwork doesn't bare that out. I have no idea what to make of the elevated white blood cell count and apparently neither does the doctor. What the hell do I do now? This is impeding my quality of life in significant ways and will eventually jeopardize my career if it hasn't done so already. Any and all suggestions welcome. Is there some sort of specialist who can help me?

I'm freaking out a little over here.
posted by thereemix to Health & Fitness (34 answers total) 23 users marked this as a favorite
Ferritin levels?
posted by bq at 10:54 AM on August 8, 2017 [3 favorites]

Have you tried an elimination diet? Or been tested for celiac disease?

Food intolerances don't necessarily show up on an allergy test. Until I removed wheat, dairy, and soy from my diet, I suffered from chronic exhaustion, brain fog, nausea, and vomiting, plus some emotional symptoms like depression and anxiety (turns out most serotonin is produced in the gut).

It took a long time to figure it out and honestly, doctors were unhelpful.
posted by cnidaria at 11:05 AM on August 8, 2017 [5 favorites]

Apologies if I'm missing this, but have they checked your thyroid levels?
posted by zoetrope at 11:06 AM on August 8, 2017 [1 favorite]

zoetrope: whoops, left that out! yes, they tested thyroid levels, mine are normal.
posted by thereemix at 11:11 AM on August 8, 2017

Please get the following checked:
- iron
- thyroid
- B12


- sleep apnoea
posted by Murderbot at 11:11 AM on August 8, 2017 [1 favorite]

bq: would ferratin level testing be different from the normal test for iron deficiency? if so, who could I go to to ask for such a test?

will try not to threadsit going forward.
posted by thereemix at 11:12 AM on August 8, 2017

Metformin prevents the absorption of B12 in about one third of the people who take it. If you are not absorbing it then a multi vitamin won't help. Sublingual pills or shots are the only way to get it back up.

But can't they try the antibiotics again? If you had the same symptoms and that cleared it up it seems like an easy fix potentially.
posted by fshgrl at 11:19 AM on August 8, 2017 [5 favorites]

My advice is *not* going to address "what's going on", but is in the category of "you know how when things are going wrong, it's time to go back to basics and make sure you're drinking a lot of water and getting enough sleep?" -- it's that kind of advice, but more specific.


Look into a Keto diet. People have reported having brain fog lift and having energy again, but also, maybe more importantly, anecdotally, people have reported that it has helped with bipolar. It also has a very good track record with PCOS.

For myself, it put two autoimmune diseases into remission (my specialist agrees), and resolved the accompanying brain fog.

A good place to start is the reddit thread for women following a keto diet. You can do a search of that site and find numerous success stories of women with PCOS very quickly getting their periods, and (for those who are trying) getting pregnant pretty quickly after switching to a keto diet.
posted by vitabellosi at 11:21 AM on August 8, 2017 [3 favorites]

Yes. Most iron tests are for hemoglobin, whereas ferritin is stored iron. You can specifically request to have your ferritin levels tested. (Ask your GP/whoever does your other blood tests.) Normal levels are 20-120, but the bottom line is that even if you're on the low end of the normal range, if you are experiencing symptoms of iron deficiency, then it's likely that you're below the level you need to operate within normal parameters. Chronic fatigue is one of those symptoms.
posted by Autumnheart at 11:22 AM on August 8, 2017 [8 favorites]

It does sound like what I went through before finally finding someone to take it seriously. Turns out my hemoglobin iron levels where fine but my stored ferritin levels were 2. It took a few months of iron supplements + then demanding it kept being checked as some drs were well you took the supplements and your fine. I found liquid caramel iron supplements at a health food store and those were easier on my stomach. As well, my B12 levels are on the lowest range of acceptable but taking a supplement helped. Sublingual. I did that on the advice of a dietician.

She also said that there has to be a reason for low iron. It doesn't just happen. And suggested I get tested for celiacs because a friend of hers found out that way. My doctor was skeptical (I fired him later!) but my blood tests numbers were off the chart. Since I've dealt with that diagnosis a lot of my anxiety, depression, soreness and just general exhaustion have improved.

I'm not sure if that's what's going on. But there are things to look at besides just a doctor shrugging her shoulders.
posted by kanata at 11:31 AM on August 8, 2017 [7 favorites]

There are many people who suffer from unexplained debilitating fatigue. Medication can sometimes help with that, even without a diagnosis. I take modafinil (aka Provigil) for my MS-related fatigue, and it has been a life saver. If you're open to it, you could talk to your doctor about this or other pharmaceutical interventions.
posted by alms at 11:38 AM on August 8, 2017 [3 favorites]

Go get a sleep study done.
posted by Fister Roboto at 11:43 AM on August 8, 2017 [2 favorites]

Did they check for Lyme disease?
posted by COD at 11:43 AM on August 8, 2017 [5 favorites]

It's affecting your work and your life. Ask them to either recommend you go on disability or help you find an answer. Modafinil seems like a good possibility.

My anecdata: My thyroid level was low normal. Doc prescribed thyroid supplement and it was a huge help. Minimal side effects, so trying it is pretty reasonable.
I have been finding that when my energy level is flat, eating red meat to get B12 helps.
Sunshine is a terrific way to get Vitamin D, but you're walking outside.

Good luck
posted by theora55 at 11:52 AM on August 8, 2017

COD: yes they checked for Lyme as well, test came out negative.

I suspected B12 deficiency because of the metformin but that came up normal during bloodwork.

Sounds like getting my ferratin tested and a sleep study is in order...
posted by thereemix at 11:53 AM on August 8, 2017

I agree with everyone who says to get your ferritin checked. I was never anemic on a blood test, but my ferritin was around 4, which is really low. Oral iron did nothing for me. I ended up getting iron infusions which were *way* better - they worked faster, didn't have gastro and other side effects, and, other than sitting there for 2 hours during the infusion, weren't in any way annoying/uncomfortable/etc.

If your ferritin comes back low, press for a referral to a hematologist - they're the ones who can help you supplement, including with iron infusions, and can also rule out other things like celiac that might be causing your low iron.

Good luck!
posted by bananacabana at 11:57 AM on August 8, 2017 [3 favorites]

I just wanted to throw this out there - what kind of doctors are you seeing? A family practice doctor is not the right way to go here. For many of them their bread and butter is sports physicals, flu shots, etc. If it were me, I would see an internal medicine doctor associated with a large hospital that you like, and let them help guide things from here into the various specialties.
posted by machinecraig at 12:18 PM on August 8, 2017 [2 favorites]

seconding food intolerances. skip gluten for a week - see what happens.
posted by speakeasy at 12:32 PM on August 8, 2017

Could it be the metformin? I have PCOS, too, and have seen many questions online over the years from women with extreme fatigue while taking metformin. In some cases, it's a sign of lactic acidosis, which is a rare but serious side effect. I second the keto/low-carb recommendation above. It's helped many, many PCOSers, and you may be able to come off the metformin completely, or at least reduce your dosage. Hope you get some answers soon!
posted by jhope71 at 12:41 PM on August 8, 2017 [1 favorite]

Make sure you've been given a full thyroid panel test -- including antibody count.
posted by Iris Gambol at 12:54 PM on August 8, 2017 [1 favorite]

I think anemia is sort of like thyroid -- many people feel a lot better when they get iron/ferritin up even if they are at levels that are just on the borderline of normal/low.

Low ferritin could also be responsible for your slightly elevated WBC.

If your ferritin is low you may not be able to get it up through oral supplements (you may have absorption problems) and if you are it will likely take weeks-months.

Iron infusions are faster, and if you need help convincing your doctor here's a study indicating that women with ferritin under 15 and hemoglobin at/under 12 see significant improvement in fatigue via iron infusions.

(Women with ferritin between 15 and 50 reported improvement but not as dramatic as those under 15).
posted by mrmurbles at 12:55 PM on August 8, 2017 [4 favorites]

Do you have any other symptoms of autoimmune trouble? Fungal infections, mystery low-grade fevers, swelling of the joints? Dry eyes or mouth? Rashes? If so, a rheumatologist should be your next step.
posted by workerant at 1:03 PM on August 8, 2017

Could it be a side effect? I felt this way on antidepressants. Ie not 'depression' exhaustion but different. Good luck.
posted by The Toad at 1:36 PM on August 8, 2017

If your B12 is on the low end of normal (less than 400 I think) and you have symptoms they are supposed to treat you and see if you get better. You also want a blood smear, not just the standard robo lab tests.
posted by fshgrl at 1:42 PM on August 8, 2017

If you do get a sublingual B12 (which I would recommend), make sure it's methylcobalamin -- check the label carefully, as cyanocobalamin is not absorbed well by many people.

Also, have you had a sleep study done? You may have developed sleep apnea or some other sleep disorder, which would explain a lot of your symptoms and lab results.
posted by ananci at 2:11 PM on August 8, 2017 [1 favorite]

If you look through my question history you'll see that a similar thing happened to me a while back: chronic, debilitating exhaustion with no clear reason why. After going to the doctor and getting bloodwork and a urine test it became apparent that I was suffering from a very bad UTI that was somehow also symptomless save for the fatigue, and a short course of antibiotics fixed that.

Since an antibiotic resolved the problem the first time around by clearing an asymptomatic UTI, and you apparently don't have a UTI now, but do have an elevated WBC count, it seems quite possible you could have an otherwise asymptomatic infection somewhere else, and that it might therefore be worth trying another course of antibiotics.

If that does the trick again, you could work with your doctor to figure out why you aren't showing more symptoms from infections.
posted by jamjam at 2:22 PM on August 8, 2017 [2 favorites]

Definitely a sleep study is in order. An overnight test will look into the possibility of sleep apnea. Before you book the sleep study, ask your sleep specialist what they would do if they determined in the test that you don't have any serious apnea issues. Ask if they would consider a Multiple Sleep Latency Test (MSLT) to follow the overnight one. It has to be done right after an overnight study, and it can give you more information about the cause of your tiredness/sleepiness.
posted by Stewriffic at 2:46 PM on August 8, 2017 [1 favorite]

There's a lot of things suggested in this thread that are probably more likely than this, but talking about how you look much paler than usual makes me wonder--

1) Do you get dizzy/lightheaded when you stand up, or when you stand for long periods of time?
2) Have you decreased the amount of salt in your diet recently?

I have POTS (postural orthostatic tachycardia syndrome) which causes that fatigue because essentially because I don't get enough sodium and that affects blood circulation. All of my blood pools in my legs (thus when I stand for more than 2 minutes I get very pale), which means my heart has to work harder to circulate blood, and I am therefore fatigued. I'm not necessarily suggesting you have POTS, but I would check your sodium + water intake.

Like I said, not super likely compared to some of the other suggestions in this thread, but maybe worth looking into.
posted by brook horse at 3:28 PM on August 8, 2017 [1 favorite]

Um… this is probably stupid, but you don't mention how much sleep you're getting. Are you consistently getting enough sleep each night? I know I've gone through periods of wondering why I'm so tired and the answer has turned out to be "because you're not sleeping enough, dummy!" So…
posted by Anticipation Of A New Lover's Arrival, The at 3:41 PM on August 8, 2017 [1 favorite]

Um… this is probably stupid, but you don't mention how much sleep you're getting. Are you consistently getting enough sleep each night?

Not a stupid suggestion at all. Only because I don't think there's a better way for me to rewrite it, I'm going to link here to a previous comment I left about sleep debt, and how 'paying off' my sleep debt made me feel like I'd just recovered from the flu. Inadequate sleep can very quickly slash not only your energy but also your cognitive abilities. Eventually, with enough consistent sleep deprivation, one reaches a point where they are no longer even able to accurately assess their own cognitive performance. In other words, if you haven't been getting consistent adequate sleep, you're probably performing at life way worse than you think you are.
posted by nightrecordings at 4:05 PM on August 8, 2017

Someone I know complains of insomnia he attributes to Metformin, regularly getting 1 to 1.5 fewer hours of sleep each night than he feels he needs. He said it took a while to "build up" the sleep debt but it's really made him miserable.
posted by kapers at 5:31 PM on August 8, 2017

I would add that "normal range" does not necessarily mean normal for YOU. If you're not at the high end of any range you can try upping your supplement dosages to see if that makes a difference (combined with tests that have been recommended in other comments).

Since there is a PCOS component, you might consider visiting a reproductive endocrinologist to have your test results reviewed. They might some other recommendations for you.
posted by vignettist at 5:47 PM on August 8, 2017 [1 favorite]

If you do get a sublingual B12 (which I would recommend), make sure it's methylcobalamin -- check the label carefully, as cyanocobalamin is not absorbed well by many people.

I looked into this and couldn't find any actual clinical evidence of this. It appears to be internet wisdom so if all you have is the cyano, I wouldn't worry about it. It's made zero difference to me as far as injectable or sublingual b12, verified by blood tests and actual doctors.
posted by fshgrl at 5:47 PM on August 8, 2017

This question is marked as answered, but I just wanted to add that for anyone taking iron supplements, to take them in the evening with Vitamin C and some food (a glass of OJ, even, it doesn't have to be a meal) to aid absorption and minimize stomach upset. Don't take iron with milk or anything with a lot of calcium, or magnesium, or caffeine, because those block absorption of iron. So if you're like me and take a handful of vitamins at some point during the day, just make sure you keep those separate.
posted by Autumnheart at 9:25 PM on August 8, 2017 [1 favorite]

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