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Fatigue, pain etc. Looking for a diagnosis... suggestions?

post #1 of 8
Thread Starter 

Background:  I'm 30, I have 4 kids (10, 8, 5 & 18mo)  My energy/moods have been pretty cyclical for as long as I can remember along with a history of clinical depression - i tend to take on a lot & then experience burn out I also have a generally sensitive body and IBS. I assumed mental health was a factor but also always suspected an underlying imbalance of some kind because I seem to metabolize differently at different times.  For instance, I will usually be very sensitive to caffeine (if I drink a cup of regular coffee I'll immediately feel jittery & if I drink it after 1pm I'll have a hard time falling aslssp at night) But if I'm feeling really burnt out i get ito a point were i notice NO effects from caffeine.)

 

just over 2 years ago, when I got pregnant with my last baby, I had extreme fatigue, headaches that lasted up to a month, upset stomach, dizziness... I just felt horrible the entire pregnancy. I also gained 20lbs in the first trimester and only 5lbs the rest of the pregnancy which was odd... But I thought it was just a difficult pregnancy (she was a twin til about 8wks so i thought that might be a factor) I felt better after she was born. I did have this thought in the back of my mind that something wasn't right about how fast I lost the weight, though.  It took 2-3 yrs after my previous pregnancies to get back into my smallest sizes of clothes, but 12 months after my daughter's birth I was buying SMALLER pants than I'd worn since I was a teenager... I worried that I wasn't absorbing enough from my food because the IBS was manifesting in pretty consistent diarhea, but I when I realized it could have been the change in diet having (mostly) given up cheese while BF my daughter, I wasn't concerned anymore. (I'm still BF, btw)

 

But over the last few months my fatigue has increased gradually so I can only compare it to the pregnancy (I'm not pregnant) as I don't recall ever feeling this crappy for this long any other time in my life.  I know that stress was a factor in kicking this off... DH and I were arguing a lot when I started to feel burnt out and when I started feeling fatigued it was the kind where I was exhausted all day but not sleeping well at night, i felt anxious a lot and if I could nap I'd wake up feeling startled...

 

But things at home were getting better and the fatigue continued to progress. DH has a new job, isn't so stressed & is being very supportive & helpful. Normally that kind of emotional change would leave me feeling invigorated & I'd go into 'productive' mode... instead, I can sleep 10-12hrs at night and still feel exhausted. I nap any time i get the chance (usually from half an hour to 2hrs when baby naps & boys are at school) I'm also having body pains - they change & seem to cluster over a few days so it will sometimes feel like its joint pain, or organs, but the most consistent has been a general flu-like ache that is especially bad in my arms (could be because they are the only part of my body that doesn't get accessive rest because I'm carrying DD or lifting her on and off the bed with me)  My arms feel like the muscles have been overworked, it hurts to do things like driving or changing my shirt, often it feels like there is  a rubber band around my bicep or forearm, and my hands tingle or go numb especially overnight. my neck & shoulders knotted up and I'm having headaches (not as bad as when I was pregnant though)

 

I first saw my dr about the IBS, thinking that was causing fatigue, but then started journaling my food, sleep & symptoms and realized how truely horrible i was feeling...  But my Dr started with stool testing, an abdomenal ultrasound and then followed up with more blood work.  I've had tons of tests over the last 6 wks I'm going to try to summerize:

 

U/s followed up by CT scan(neck to pelvis) and MRI (focused on the liver) found:  Enlarged Spleen, 2 benign cysts on my liver

 

Stool tests: all normal

 

Blood tests:

 

11/8

Metabolic Panel: all normal

CBC: white cell count 3.7 (range 4.8-10.8) Low-  everything else normal

Morning cortisol (blood): 16 (range 6-20) Normal

Urine test: all normal

Monoscreen: Negative

C reactive protien: negative

TSH: 1.09 (range .4-4.94) Normal

ESR: 10 mm/hr (range 0-20) Normal

Lyme antibody: Negative

ANA: 1.0

 

11/18

LDH: 125 (range 104-211)

EBV: positive for anitbodies, Negative for active infection

Negative for Celiac, CMV, 

Normal Hepatic panel & periph blood smear

Reticulocyte-auto: Normal

Ferritin: 68.8 (range 10-150) Normal

Iron: 163 (range 59-158) High

Tissue transglutaminase AB-IGA: Normal

 

12/11

Vit D: 20 (range 23-65) Low

Vit B12: 560 (range 211-946) normal

folate serum: >20 (range 4.4-31) normal

morning ACTH: 13 (range 10-60)

morning cortisol: 12.7 (range 6-20)

free T4: 1.3 (range .8-1.8)

TSH: 1.63 (range .47-5)

Iron: 86 (range 59-158)

TPO antibodies: 107.1 (range <9)

 

The endocrinologist I saw recommended I take Vit D 5000IU daily and perscribed Levothyroxine 25mg because of the TPO antibodies even though my thyroid levels looked okay.  I started both of those last week.

 

I suspect adrenal issues but am waiting on ordering saliva tests & seeing a naturopathic Dr til after tax returns. We have good insurance that covers most of these tests but funds are too tight to pay up front for 'alternative' medicine right now.  I've gone paleo for up to 3 weeks at a time over the past couple of years & never noticed feeling much better, so while I understand food elimination can take time & diet is something I'm willing to address, I really feel that I need either some help with my energy or at least a diagnosis to be motivated enough to take on something that difficult. Right now my appetite is wierd so sometimes I don't feel like eating at all & as a result indulge cravings. still I eat a lot better than the average american.

 

I'm trying to be patient and see if the Levo and/or Vit D help at all, but the achiness/ body pain has been worse this week and it is so hard to just wait when my body is screaming to me that something is WRONG. Not to mention I feel so bad about laying around in bed all the time & not doing things with my kids :(  I feel like I need to continue to pursue answers because if I don't see any more improvement in the next month (that's how long the pharmacist said the levo would take to help) I don't want to have wasted all this time just laying around if I could be ruling out or confirming another problem. I called the endo about the increase in pain and she suggested following up with my family dr.  But is there anything she can test/do? or will she just suggest chiro? (I've already seen my chiro) 

 

I want as MUCH info as possible about what is going on in my body so I can come up with a plan of attack (and the motivation to follow through) 

 

If you have any suggestions for other tests i could have done or things to ask my Dr about, or if you have any insight about my labs I'd appreciate it.

TIA

Lia

 

ETA: my drs keep suggesting I try antidepressants, but I have lots of experience with depression and this is different! I do feel frustrated/depressed about feeling so crappy, but I don't wake up in despair... I'm not enjoying regular activities because I am in pain and tired, it's not like when I'm depressed and don't want to be around people because I'm sulking -- I actually WANT to do things I just don't have the energy. just getting a bath & getting dressed drains me. I grocery shop every 2 weeks and each time it's harder to get through... Also I see a therapist so mental health is being addressed.

post #2 of 8
What about lupus? Or other auto immune? Also taking calcium?
post #3 of 8

The TPO antibodies mean you have Hashimoto's, an autoimmune thyroid disease.  Some people do better on natural desiccated thyroid, like Armour, which contains T3 and T4.  Levothyroxine is just T4.  Some people need to also take the T3 because their bodies are poor converters from T4 to T3.  Since you have Hashi's, you need to be gluten free as there is a molecular mimicry issue with gluten and your thyroid.  Many people who have one autoimmune disease will find that they also have another, so that's where I would focus if you pursue more testing.  

 

The two best books on Hashimoto's are:

 

Hashimoto's Thyroiditis, Lifestyle Interventions for Finding and Treating the Root Cause, by Isabella Wentz

 

and

 

Why Do I Still Have Thyroid Symptoms When My Lab Tests are Normal by Datis Kharrazian

 

Both have websites, if you search online.  If you buy just one book, start with the first by Wentz.

 

Another great book on autoimmune disease recovery is:  The Immune System Recovery Plan by Susan Blum, M.D.  It is more general, not just specific to Hashimoto's.  

 

I have Hashimoto's and am on 15 mg. of Armour (a really small dose), have made some diet changes, etc. and feel great.  

 

Good luck!

post #4 of 8
Thread Starter 
Quote:
Originally Posted by periwinkle 88 View Post
 

The TPO antibodies mean you have Hashimoto's, an autoimmune thyroid disease.  Some people do better on natural desiccated thyroid, like Armour, which contains T3 and T4.  Levothyroxine is just T4.  Some people need to also take the T3 because their bodies are poor converters from T4 to T3.  Since you have Hashi's, you need to be gluten free as there is a molecular mimicry issue with gluten and your thyroid.  Many people who have one autoimmune disease will find that they also have another, so that's where I would focus if you pursue more testing.  

 

The two best books on Hashimoto's are:

 

Hashimoto's Thyroiditis, Lifestyle Interventions for Finding and Treating the Root Cause, by Isabella Wentz

 

and

 

Why Do I Still Have Thyroid Symptoms When My Lab Tests are Normal by Datis Kharrazian

 

Both have websites, if you search online.  If you buy just one book, start with the first by Wentz.

 

Another great book on autoimmune disease recovery is:  The Immune System Recovery Plan by Susan Blum, M.D.  It is more general, not just specific to Hashimoto's.  

 

I have Hashimoto's and am on 15 mg. of Armour (a really small dose), have made some diet changes, etc. and feel great.  

 

Good luck!

I'm confused about the diagnosis of hashimotos... My endo didn't diagnose me and in a phone conversation with the nurse i asked her something (can't remember what) she said something like "that's only a concern for people with hashimotos..." and i said "I thought that is what TPO antibodies meant?" and she said "No, it could just be thyrioditis" and I thought that hashimotos and thyroiditis were the same thing but I guess I didn't feel like continuting the conversation because I didn't ask her that... I did ask about testing for T3 incase my body wasn't converting it and she called back after talking to the dr and said that they only test T3 when T4 is off because that's the only time its relevant, which is not what I read.  

 

It seems like others have had problems getting drs to prescribe meds based on symptoms when thyroid levels look okay AND a lot of drs don't seem to test TPO antibodies right away so in those areas my endo seems good, but otherwise I am not impressed. It's so frustrating that my health insurance won't cover naturopaths... It would have saved them hundreds of dollars already...

 

Thank you for the book recommendations. I am so overwhelmed thinking about eliminating things from my diet... It feels so much like deprivation/pushing myself, more than taking care of myself and treating myself, you know?

 

Did you just eliminate gluten or dairy, soy & eggs too??  I don't eat much dairy anymore but have replaced some of it with soy & I don't eat a lot of meat...  I've been able to do diets a few times but I've always been either in a wilderness immersion camp, or otherwise active & busy when I did so. Finding it very hard to hold on to motivation when I'm laying around in bed all day and food is one of the few things I can 'treat' myself with (when I don't feel nauseous)  *sigh* I am due for grocery shopping this week & that is the best time to look at diet changes.

Quote:
Originally Posted by LLQ1011 View Post

What about lupus? Or other auto immune? Also taking calcium?

I also think autoimmune makes the most sense... it was my understanding that my ANA would be higher with lupus... are there other things to consider? I sometimes take a  cal-mag vitamin but not regularly. My calcium has been good on labs.

 

 

Thank you both for reading and responding.  I realize my post was quite long!

post #5 of 8
Find a different doctor. They obviously need to look infinitive est results better. My doctors all said well you could have aps but it could be something else. It wasn't something else. I have aps. I had to switch specialists
post #6 of 8
Thread Starter 
Quote:
Originally Posted by LLQ1011 View Post

Find a different doctor. They obviously need to look infinitive est results better. My doctors all said well you could have aps but it could be something else. It wasn't something else. I have aps. I had to switch specialists

I'm assuming your auto-correct changed "Lupus" to "aps"...  How did you (and your current doctor) determine that you had lupus?

post #7 of 8
Antiphospholipid syndrome it what I have. I had positive anti body tests nd they kept saying well you could have an infection.... Which for months with no signs of infection was ridiculous to me. I took my same test results to a New specialist and confirmed my test results and got the treatment I needsd
post #8 of 8

To answer - I had already eliminated soy and eggs from my diet prior to the Hashi's diagnosis, because I reacted to both (headaches, body aches, sleep issues, etc.).  I had also cut cow dairy products, but am fine with goat so still eat goat yogurt.  I hadn't stopped all gluten products until my diagnosis.  I feel much better gluten free.  Definitely a noticeable difference.  

 

I think you're right, that a lot of people have trouble getting thyroid issues diagnosed.  I bet that I still wouldn't have mine diagnosed if I hadn't searched for a doctor that would go above and beyond the usual testing, given my symptoms.  My TSH was fine, but all my symptoms added up to a thyroid issue.  What I've read is that 90% of people in the U.S. with a hypothyroid condition actually have Hashimoto's, but since the standard treatment is the same as for low thyroid, most doctors never test for the antibodies.  Yours did, so that's great.  What I've learned since then is that by changing diet, people can greatly improve the progression of their autoimmune disease.  Google "autoimmune paleo" and you'll come up with a lot of info. on how to eat for autoimmune disorders.  I completely get what you're saying about how changing your diet makes you feel like you're depriving yourself, but I have to say that for me, I would much rather have a restricted diet and have the energy to live my life and interact with my kids and husband in a positive manner, than feel like I did before the changes I made to my diet.  Having a restricted diet is a total hassle.  Feeling great is worth it.  If you decide to make any changes, just take it slow, one step at a time if it's easier.  Start with cutting out gluten since that has a direct impact on Hashimoto's, and don't replace the things in your diet with GF replicas, like GF bread, which are usually high carb, and low nutrient. Go for whole foods, not processed equivalents is what I'm trying to say. I am not paleo, I do eat gluten free grains such as teff, amaranth, buckwheat, etc., but not at every meal, usually just one serving a day or so.  It takes time to figure out waht works for you, and it's different for everyone.  If you do read about autoimmune paleo, you'll get an idea of what things might be triggering your issues. If you read the Wentz book I previously mentioned, you'll understand why the diet changes, and also there's so much more in there about gut health, etc. and how that impacts hashi's.  

 

As far as doctors go, I wonder if naturopaths might be covered for you after Jan. 1st? They are for me because of the new health care laws.  Before they were covered I was able to find doctors in my area (one an M.D. and one a D.O.) that were holistic/integrative, and thought outside the box when it came to testing and treatment.

 

Good luck.  I've been there, and it takes a lot of effort and research and time to figure it all out and make the changes that need to happen. It's not an easy fix, like just taking a pill, and a lot of doctors are not informed.  You really have to do your own research and be your own advocate to heal.     

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