Completely Exhausted - Again! What is THIS?***Update post 89***

[shiloh]

I have been going to the doctor for this for the last 2-3 years and seem to be getting nowhere. I have them pull blood and ask for certain tests to be done and all I get told is that I either have a vitamin B12 deficiency or that my thyroid is low or here take this vitamin D. And I don’t improve. I either get nothing or a slight uptick in energy then a couple months later back down I go. I hate this - I am used to be being very energetic and keeping quite busy but this tired to the point of wanting to stay in bed all day is scaring me. I mean - WTF? I used to be outside all day and still go to work at 3 or 4p and stay til 3 or 4a. Now? Just kill me.

I wake up and am body sore all over. My head hurts and I feel like someone has beaten me. As the day passes I am less body sore but it is still there. At night when I sleep I feel feverish and wake up all drippy wet with sweat. (yuck). My joints hurt. Even doing simple day to day things wear me out. I am doing the head snap over breakfast and after I do the household chores I am so tired I have to take a nap. Then I find I am going to bed earlier and earlier - I used to stay up til 12 or 1a. Not now - I’m a pumpkin at 10p. I get weird rashes for no reason. Or any insect bite provokes old rashes to return.

I realize that depression can affect the body but not to this extent. I have been tested multiple times for Lyme disease and keep getting told that no, I don’t have it. I think I do. I fall well within parameters and have been bitten by multiple ticks during the last few years. The last one was in September or October of 2017. If I don’t have that - then what IS this? I am looking to the collective wisdom of CoTH and maybe some armchair doctoring here. Any ideas?

Last MD visit she bumped up my thyroid meds to .50 and gave me 2000 units of vitamin D everyday and B12 everyday and I felt okay for a month or so and am now back to square one. Oh, and I test hypoglycemic if that helps.

[Zu_Zu]

Stress IMHO

[Sannois]

@shiloh

I have been going to the doctor for this for the last 2-3 years and seem to be getting nowhere. I have them pull blood and ask for certain tests to be done and all I get told is that I either have a vitamin B12 deficiency or that my thyroid is low or here take this vitamin D. And I don’t improve. I either get nothing or a slight uptick in energy then a couple months later back down I go. I hate this - I am used to be being very energetic and keeping quite busy but this tired to the point of wanting to stay in bed all day is scaring me. I mean - WTF? I used to be outside all day and still go to work at 3 or 4p and stay til 3 or 4a. Now? Just kill me.

I wake up and am body sore all over. My head hurts and I feel like someone has beaten me. As the day passes I am less body sore but it is still there. At night when I sleep I feel feverish and wake up all drippy wet with sweat. (yuck). My joints hurt. Even doing simple day to day things wear me out. I am doing the head snap over breakfast and after I do the household chores I am so tired I have to take a nap. Then I find I am going to bed earlier and earlier - I used to stay up til 12 or 1a. Not now - I’m a pumpkin at 10p. I get weird rashes for no reason. Or any insect bite provokes old rashes to return.

I realize that depression can affect the body but not to this extent. I have been tested multiple times for Lyme disease and keep getting told that no, I don’t have it. I think I do. I fall well within parameters and have been bitten by multiple ticks during the last few years. The last one was in September or October of 2017. If I don’t have that - then what IS this? I am looking to the collective wisdom of CoTH and maybe some armchair doctoring here. Any ideas?

Last MD visit she bumped up my thyroid meds to .50 and gave me 2000 units of vitamin D everyday and B12 everyday and I felt okay for a month or so and am now back to square one. Oh, and I test hypoglycemic if that helps.

Wow Shiloh, To me that sounds like something, and not depression. Something is going on there, and you know your body, Things like Menopause, Bad food, too much caffeine can cause some symptoms, but I think, and no I am no doc, you need to get thee to another doctor who will listen to your symptoms, and not just say, oh take this, or lets do this test, oh it is your thyroid, Nope not buying that.
the first thing I would look at is LYMES. The body aches is tell tale. the crashing exhaustion.
Be the squeaky wheel, Ask for a referral to a specialist. Really keeping my fingers crossed for you, Knowing what you have is half the battle.Kim

[Where_sMyWhite]

OP, I concur with Sannois to push for a different dr/specialist. I would not be happy with continuing symptoms that appear to be this significant.

Maybe stress but doesn’t sound like it to me.

Perhaps check the Symptom Checker on WebMD? It asked far more detail that I could guess at

What blood work are you asking for that doesn’t get done? Discuss referral (if you need one) to endocrinologist or rheumatologist. Those specialists should, IMO, cover many of the possibilities worth checking in to.

[yaya]

You say you’ve been bitten by ticks, but could you have been bitten by one of these guys?
http://www.foxnews.com/health/2018/08/24/blood-sucking-kissing-bugs-spreading-dangerous-parasitic-disease-in-us-health-officials-warn.amp.html

[SCM1959]

@shiloh I see that you are located in California, central coast? I think you should go to a rheumatologist who specializes in autoimmune diseases. This very well may be lyme, but there are many autoimmune diseases that also have symptoms such as yours. I work for a non-profit, The Scleroderma Foundation, and they list recommended rheumatologists on their website. I am NOT saying that scleroderma is a possibility (in my mind your symptoms do not line up), BUT the listed rheumatologists are autoimmune specialists and I think maybe you need to investigate that you may have some sort of autoimmune disease.

These physicians are researchers as well as clinical doctors, so they have that little bit of “extra want to know!” … I think you need this type of physician.

See below for the recommended rheumatologists in California:

SCM1959

University of California, Division of Rheumatology
1000 Veteran Ave., Rehab Center Room 32-59, Box 951670, Los Angeles, CA 90095-1670
Telephone: (310) 825-2448 and (310) 825-4744
Fax: (310) 206-8606
Website: www.rheumatology.ucla.edu

Rheumatologists:

• Philip J Clements, MD, MPH
• Suzanne Kafaja, MD
• Elizabeth Volkman, MD

Stanford University Medical Center
450 Broadway St. Department of Dermatology, Pavilion B, 4th floor
Redwood City, CA 94063

Appointments: 650-723-6961
Physician Inquiries: 650-736-0727
Research Inquiries: 650-725-4612

Rheumatology: Lorinda Chung, M.D., M.S. / Jison Hong, M.D. / Janice Lin, M.D.

[Zu_Zu]

again … continued STRESS & Depression can result in all the listed physical issues …IMHO

sending Jingles for a new doctor group … diagnosis & treatment plan and RELIEF ~

[Zu_Zu]

Any chance of an environmental issue like
[B]black mold ?

water source ?

AC checked ?[/B]

any neighbors similarly ill ??

any of the cats showing symptoms of NQR ?

[Equibrit]

Lupus ???
https://www.lupus.org/

[Tyrus_Mom]

I don’t know what your age is, but hormones can do terrible things to you. Have you had your hormone levels checked? Hormone replacement therapy is one of the blessings of the last century. The night sweats and fevers, sleeplessness come with fluctuating hormone levels.

Lack of energy, shorter days of productivity and aches and pains… well, welcome to older age for any of you haven’t gotten there. Vitamins help me. If I don’t take my chondroitin on a regular basis I can hardly get out of a chair. That problem surfaced when I was in my 40s too, but thank heavens for chondroitin and gelatin. There are quite a few vitamin supplements that help. Also, if I don’t take curcumin I feel subtle aches and pains that I otherwise wouldn’t.

Not that I don’t think you should see another doctor. I do. Some (especially men) doctors tend to discount our worries sometimes thinking we are over-reacting… maybe find a female doctor who is more sympathetic. If it is a tick-borne disease, you need to know asap. I agree with the poster above about the new insect-borne disease coming from South America that was on FOX news recently. That certainly is a scary possibility.

Good luck.

[Simkie]

That’s exactly how I felt when I had Lyme. Around here, they just start you on antibiotics. The blood test isn’t very reliable, anyway.

Can you find a Lyme literate doctor? That’s the term you want to search for. There are also other tick diseases that can make you feel super crappy.

If you’re on levothyroxine you might also find this site useful: www.stopthethyroidmadness.com

[Color_of_Light]

@shiloh

Last MD visit she bumped up my thyroid meds to .50

gave me 2000 units of vitamin D everyday and B12 everyday and I felt okay for a month or so and am now back to square one.

You’ve been on only .25 Levo? For how long? This partially explains how you’re feeling, because .25 is less than the starting dose, unless you are elderly or have heart disease. If you are, then you should only be on .25 for 6 weeks before retesting and having an increase to .50, just like how normal dosage increases are supposed to happen every 6 weeks until you have symptoms under control.

If you are neither elderly nor have heart disease, you sound very under medicated and like you might have Hashimoto’s or another autoimmune disease. Have you had your thyroid antibodies tested to find out if Hashimoto’s is causing your thyroid problem? The antibodies are called TG and TPO. The starting dose for Levo is .50, not .25. .25 can make you feel much worse because it’s not enough to increase your FT4 towards adequate levels, but is enough to play around with your thyroid. The .50 dose is supposed to be used for only 6 weeks, and then FT3, FT4, and TSH are retested to see if your levels have become adequate and if your symptoms have gone. If they have not, then at that 6 week point, Levo is increased another .25, you let 6 weeks pass again, retest, and possibly increase Levo another .25. You keep retesting and adjusting Levo continues every 6 weeks until you have the least amount of symptoms and/or until your FT4 is between 50 and 75% of the lab range. Even if you symptoms have been under control for years, any time that symptoms increase or persist, this usually means that hormones have decreased. TSH, FT3 and FT4 are then tested and medication is usually increased.

How low was your vitamin D when you started the 2000 iu? If you were/are low enough or are deficient, 2000 iu vitamin D every is not enough increase your level by much or to make you feel better. If low enough, a loading dose of 10,0000 iu daily for a week, or 50,000 iu weekly is often used for awhile and then 4,000 iu daily. Some people get nowhere on 4000 daily and have to take 20,000 - 50,000 weekly to maintain good levels.

Your doctor should not let your symptoms persist for 2-3 years, or even months. There are some MD’s who are knowledgeable about thyroid disease, but you have weed through a lot of riff raff. Same for endocrinologists. I personally would not recommend seeing one for thyroid disease based on the multiple bad experiences I’ve had with them, but every so often you hear about one treating thyroid disease correctly. It’s simply not their specialty. My thyroid disease and Hashimoto’s friends all see either a good MD, an RN who has taken a special interest in thyroid disease, a DO, or an ND to get the right tests and right medication.

[Where_sMyWhite]

Again, endocrinocologist to address potential hormone issues (of which thyroid is one) and/or rheumatologist to look at Lyme, lupus or other auto immune diseases. Not saying you have one but if you are concerned about how you’re feeling, good specialists to check with.

Could be environmental or stress but based on your description, wouldn’t be the direction I’d be leaning until after consulting with both of the above.

[cayuse]

I have psoriatic arthritis (athritis related to psoriasis) and my symptoms sound a lot like yours. I am chronically exhausted and hurt 24/7. I second going to a rheumatologist and when you do make sure you show him the rashes. I spent years trying to get a diagnosis and was told it was depression until my joints became deformed. THEN, people listened but by then the damage was done.
Hope you are able to find some answers soon.

[poltroon]

There are other tick-borne illnesses besides lyme, and you might look into those.

[shiloh]

Oh wow! THANK YOU guys - I mean it, really. I have a lot of stuff to research now.

@yaya - glad that link didn’t have pictures of bugs lol! But now that you mention it I have been having runs of arrhythmmias for awhile now. Every doc I talk to about it or mention it to, basically pats me on the head and says stress. One guy did an EKG but nothing showed. So, again WTF?

@Zuzu - I’ve been very stressed and depressed lately but not nearly as bad as I have been at other times, so while I feel those aren’t helping the situation, they aren’t the root cause. And yes, I have been exposed to significant amounts of black mold. Not in this house but the last one I lived in. The place was rotten with it and the lovely landlords had simply painted over it. Idiots.

I’ve been on Levo .25 for a few years - I forget how long I’ve been talking the stuff. And 6 months ago she bumped it to the .5 based on my blood tests which included a complete thyroid panel. Though I will say that I need to find out exactly what is covered on a “complete” panel. I know some things that are included but not all. I mean, how complete is complete?

I have an appt on 9/3 and am going to put the screws to this new PA and get another referral to the endocrinologist.

Also, forgot to mention I am on double HRT (at a very high level - seeing doc about that 9/11) and high bp meds (clonidine - once a day keeps my bp in check, 2x makes my arms and legs go numb because I am too low.) I am so used to taking those things that I no longer really “think” about them. Maybe I should.

So many possibilities! I don’t know whether to say “Oh no.” or “Yay, now I know.”

[Magicboy]

I read this thread and hope you get additional opinions and, perhaps a different primary care MD

[GutsNGlory]

Have you had an ANA panel done? Your symptoms match well with several autoimmune disorders so if you haven’t, I would certainly urge your doctor to do so (or look into a new doctor).

What does the rash look like? How does it feel (itchy, hot, etc.)?

Feel free to PM me if you want to send pictures or just generally have questions. I was diagnosed with Lupus a few years ago and now battling symptoms of what is likely Scleroderma (this was thrown around during my original diagnosis as well as part of MCTD, but SLE is my primary).

My initial symptoms were joint pain, fatigue, thyroid imbalance, and minor Raynauds. All of those got MUCH worse pretty quickly and I also added full body rash, night sweats, hair loss, brain fog, dry/cotton mouth, loss of appetite, weight loss, and more.

[downen]

Your symptoms are textbook for Adrenal Insufficiency. Google “Addison’s Disease.” Unless they’ve already done a fasting blood cortisol test, I would order one, stat! I hope you feel better. In 2000 I could barely climb a flight of stairs and I thought I was dying. It was my adrenal glands that had died. Luckily I was able to get diagnosed and am back to a functional level. You’ve got a lot of stuff to look into, so good luck! If you want any information on Adrenal Insufficiency, please PM me. It’s very rare, but a friend of mine just got diagnosed a few years ago with some guidance from me for what tests to ask for.

[Fillabeana]

Another set of blood tests to ask for (and then insist on, when the doctor says, ‘Oh no, dear, you couldn’t possibly have Celiac disease’) is for antibodies specific to Celiac disease.

Celiac is very simple to screen for in people who are currently consuming wheat/gluten.

About one in 100 people has Celiac disease, and only 1 out of 5 is diagnosed.

Symptoms vary quite widely. Digestive symptoms are common, but many people have no digestive issues at all- just osteoporosis, thyroid issues, anemia, B12 and Vitamin D absorption issues…

B12 deficiency, thyroid issues, and rash (called Dermatitis Herpetiformis) are very common with Celiac disease.

There can also be nerve issues. Numbness and tingling in the extremities (fingers or toes or both) that is not due to carpal tunnel or diabetes…should be investigated as Celiac neuropathy.

Celiac disease also can be the first autoimmune disease that you experience, leading to other autoimmune issues such as type 1 diabetes or rheumatoid arthritis, or lupus or many other AI diseases.

It used to be that doctors thought Celiac disease would always present in a young child, and always with diarrhea and failure to thrive, and that is was pretty uncommon. We know that is not true now. You can get Celiac at any age, be overweight, have no (or minor, such as gastric reflux or constipation) GI symptoms.

Please have your primary care doctor order the tests. It is very likely that said primary care doctor will not want to test for Celiac disease. There is no drug for Celiac disease, and thus there are no drug reps showing up to give doctors current standards of care and testing, current research and such. Ask for all of the tests- tTG, EMA, DGP, total IgA.

And DO expect just about any physician to be reluctant to run screening tests, even if you have symptoms.