Fatigue, hair loss and latest labwork

[Stacy0w]

So I've been feeling real tired the past six months (celiac rx 12/2014) and losing a lot of hair.  First labs ran in May by my family dr were: TSH (.942), glucose,sodium, potassium, chloride, co2, calcium ca, calcium corrected, bun, creatinine, protein, albumin, albumin ratio, bilirubin, alkaline phosphates, AST, alt, egfr, WBC, rbc, hbo, hct, mcv, much, mchc, rdw, platelet count, vit b12, all cholesterols. The only things at all off were calcium, ca and protein. Both slightly high. Still feeling worn out and hair so thin I went back two weeks ago. They ran TSH (1.315), t3 free (2.68), t4 free (.88), tpo ab (.4), iron, transferrin, total iron binding and saturation. All fine. I'm super frustrated. I went back today to be given the latest results and since all were fine today they ran ANA, FSH and hm...I forget at least one other thing. Blood pressure was 105/57.  Any of you have suggestions or thoughts?  He said if these turn up nothing I'll most likely be referred to a rheumatologist. Sigh. I was sure it was thyroid based so I researched endocrinologists. I know nothing about rheumatologist and I'm just so frustrated thinking this is just my new norm. I'll be bald by Christmas. :-/

[Stacy0w]

FSH and cortisol levels are back and good. Only thing left is ANA. Not sure what after all this  

[ironictruth]

On 8/31/2016 at 0:08 PM, Stacy0w said:

So I've been feeling real tired the past six months (celiac rx 12/2014) and losing a lot of hair.  First labs ran in May by my family dr were: TSH (.942), glucose,sodium, potassium, chloride, co2, calcium ca, calcium corrected, bun, creatinine, protein, albumin, albumin ratio, bilirubin, alkaline phosphates, AST, alt, egfr, WBC, rbc, hbo, hct, mcv, much, mchc, rdw, platelet count, vit b12, all cholesterols. The only things at all off were calcium, ca and protein. Both slightly high. Still feeling worn out and hair so thin I went back two weeks ago. They ran TSH (1.315), t3 free (2.68), t4 free (.88), tpo ab (.4), iron, transferrin, total iron binding and saturation. All fine. I'm super frustrated. I went back today to be given the latest results and since all were fine today they ran ANA, FSH and hm...I forget at least one other thing. Blood pressure was 105/57.  Any of you have suggestions or thoughts?  He said if these turn up nothing I'll most likely be referred to a rheumatologist. Sigh. I was sure it was thyroid based so I researched endocrinologists. I know nothing about rheumatologist and I'm just so frustrated thinking this is just my new norm. I'll be bald by Christmas. :-/

Get a thyroid ultrasound if you can. All my levels were normal too but my thyroid appears like Hashimoto's. I was only tested for one of the antibodies which was negative. I read quite a bit online that it is common for folks to have normal blood levels with Autoimmune for awhile. We are hoping mine is a self limiting thyroiditis (pain started in Feb) and the inflammation, my endo thinks, was caused by a gluten challenge. He will be repeating the ultrasound. My doctor was not going to refer me to an Endo so I did it myself. 

My hair falls out a lot too, and my bp is often 90's/50's, sometimes lower. Doctor's brush it off but if I scroll back on my office visits over 4 years it is low for me. But I also have mildly hypertensive days with a higher heart rate. I swear, my thyroid is bipolar. 

The body is amazing, my cortisol has been checked 4 times and was a tad low just once yet my left adrenal gland is damaged (post gluten challenge).

Keep plugging away! Make sure to get all the appropriates tests. First time I saw my endo he told me the primary care used an old test. 

If you can, I would highly suggest a naturopath too. I was afraid to see one because they are not usually MD's but I got lucky with my Endo because he is very similar in thought. 

[icelandgirl]

 Hi Stacy and ((((hugs))))!!

I do think it could be your thyroid.  I agree that a thyroid ultrasound is in order.  Also, you didn't include ranges on your labs, but if yours are the same as mine, then your Free T3 and Free T4 are low...that means hypothyroid.  

A lot of Dr's only look at TSH or make sure that every number is within the box, but you can be in the box and hypo.  You want to be at 50-75% of the range for your Free T3 and T4.  If your ranges are similar to mine, then you would want your Free T4 to be 1.3-1.5.  .88 is really low on the range.  When mine gets that low, I feel horrendous....headaches, lightheaded, exhausted.  I work with my endocrinologist to keep mine in the 1.35-1.5 range as that's where I feel best.

You might benefit from thyroid replacement medication?  

One more thing...ferritin.  Did you get that checked?   That's an important one too.

I hope you get to feeling better!

[Stacy0w]

ataglance - I hadn't considered an ultrasound after everything came back "fine". Interesting. They still need to call me back with the ANA results so I'll ask about that. Hoping if that's fine too he will refer me. My insurance likes referrals which complicates things. He'd mentioned a rheumatologist but I'm thinking endocrinologist.  After I went through my laundry list of symptoms and my family history of hashimotos my doctor shocked the results were what they were. .

 

icelandgirl - thanks for the hug   I pulled my labwork. I don't have the most recent ones in hand yet just the phone call saying they were good. TSH in May was .942 and August 1.315 with the range being .34 - 5.6. Free T3 recently 2.68 range 2.5 - 3.9. Free T4 recently .88 with range of .58 - 1.7. So you're right they are on the lower end which I hadn't noticed.  They tested iron and transferrin. Iron was 91 range 28 - 170 and transferrin 278 range 192 - 382. Iron binding capacity (whatever that is) was 414 range 263 - 469.

 

Thanks for trying to help me

[icelandgirl]

You're so welcome.  I could use a hug most of the time myself.  Lol!

My mom's numbers were always fine.  She wasn't feeling great though and last year I had her request a thyroid ultrasound.  They found a large nodule that they decided to watch.  Her energy level has decreased this year and her thyroid numbers have been crazy.  They did another ultrasound and found that the nodule has grown.  Today she had a biopsy done on it.  

I'm attaching a link to a site with great thyroid information and some of the tests they recommend.  I hope it helps you.

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I really hope you get some answers soon.

[PTArt]

 

Hi Stacy, You sound a lot like me.....here are a few suggestions that were the root cause of my profound fatigue which did end up having thyroid involvement. Have your antibodies for candida checked. If you have an overgrowth of candida in the gut, the candida is capable of blocking the thyroid hormones from entering your cells. This would cause all your levels of thyroid hormones in the blood to look normal even though your body is not using them. If your candida is high, then you would have to get this under control. Another possibility is low levels of iodine. I also had this, partly due to low intake and partly due to poor absorption. So have both of these checked to see if these may be the cause. If you can find a good functional medicine doctor in your area that person could probably help you more than  a traditional doctor could. Hope this helps.

 

 

[LookingforAnswers15]

Hi, look at your vitamin b levels. You said they were fine but check how high they are. I am also frustrated. I had a few months when I was not losing my hair and now it has started falling out again. I checked my b12 vitamins and while they are in "normal"range they are at the lower end of the range and they are lower now than a few months ago. So, I am hoping it is because of vitamin b. I am also tired. Good luck.

[Stacy0w]

Icelandgirl - Thanks for that info. I just feel like it has to be thyroid despite my labs. I hadn't considered an ultrasound. Can I regular dr "prescribe" that or do I need a referral to a specialist?  I definitely don't want a biopsy, but all the weird symptoms are getting me down. I need answers. How's your mom?  I hope everything turns out ok!

 

ptaart - it felt like I had had everything lab related run, but I hadn't been checked for iodine or candida. Can it really mess up your thyroid labs?  That's craziness. I've found a good functional med dr, but my insurance won't cover her and I can't afford to go that route :-/. How hard is the candida diet to follow?  It looks awful. My stomach is sensitive to a lot of things. Most things I can eat are on the avoid list

lookingforanswers15 - I checked and my b12 was 770. On the higher end of the lab range. So that probably isn't it. I hope figure out how to feel better!

 

oh, and the dr called to say my ANA lab was fine.  I asked what I should do next and they said they'd call me back. Yesterday. *rolling eyes*. I wish they just refer me some place else. Insurance games. Ugh 

 

[icelandgirl]

Hi Stacy,

My GP ordered the ultrasound for me.  My mom's did for her.  She's doing well, thanks for asking.  Still no results...just waiting.

I agree that you need some answers.  Ongoing fatigue and hair loss has a cause...it may be as simple as needing a small amount of thyroid medication.  I feel your frustration.

[Stacy0w]

On September 7, 2016 at 10:20 PM, icelandgirl said:

Hi Stacy,

My GP ordered the ultrasound for me.  My mom's did for her.  She's doing well, thanks for asking.  Still no results...just waiting.

I agree that you need some answers.  Ongoing fatigue and hair loss has a cause...it may be as simple as needing a small amount of thyroid medication.  I feel your frustration.

I hope she gets good news soon!

Doctors office finally called back Friday. The doctor doesn't kin what else to do or what tests to run so he said I should come for a follow up in six months. Nope. I asked if I could be referred and the nurse said the dr wasn't even sure who I should see for my wide range of symptoms. Seriously?  So I asked to be referred to an endocrinologist. Supposedly the dr office referral team will be calling me. We'll see. If nothing by Wednesday I'll call back and try again. 

[icelandgirl]

Good for you on not just saying ok to the 6 months!  An endocrinologist is a good start.  Make sure you take a complete list of your symptoms and ask for a full thyroid panel and ultrasound.  I hope for you that things start happening soon!  Do keep on them, you absolutely have to be your own advocate.

My mom got a call back that her results are in and would be discussed at her appointment at the end of the month.  Not very helpful.  I'm thinking it's not cancer though, if it was they'd probably have her come in sooner.  I told her that and she felt better.  I know that she is anxious.

(((Hugs)))

[BDD]

Did they check ferritin? If so, what was the result?

[Stacy0w]

Icelandgirl - pretty awful they are making her wait, but I agree I think if it was serious they wouldn't wait. Tried this week to find an endocrinologist that would take my insurance and see me. No go so this week I will call my insurance and see if they can do anything. Discouraging 

BDD - I double checked and this is what iron tests were run... They tested iron and transferrin. Iron was 91 range 28 - 170 and transferrin 278 range 192 - 382. Iron binding capacity (whatever that is) was 414 range 263 - 469.  Not sure why they ran what they did/didn't. Trying to look up lab result info now to see if ferritin could be an important missing factor or not

[SusanNash]

On 8/31/2016 at 11:08 AM, Stacy0w said:

 

• Could be Biotin deficency - the enzymes that are responsible for uptake can be damaged in Celiac.  Also zinc deficency cause that problem

[BDD]

I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body.

FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low.

Edit: Also my blood pressure was low when my ferritin level got very low.

[cyclinglady]

2 hours ago, BDD said:

I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body.

FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low.

Edit: Also my blood pressure was low when my ferritin level got very low.

Good point.  My ferritin was a 2; however,  I was processing iron just fine when I was diagnosed.  That is what caught my GI's eye when I went for my first "over 50 club" colonoscopy.  Celiac blood test positve (just one on the panel) and endoscopy revealed Marsh Stage IIIB.  

[cristiana]

On 9/19/2016 at 3:26 PM, SusanNash said:

• Could be Biotin deficency - the enzymes that are responsible for uptake can be damaged in Celiac.  Also zinc deficency cause that problem

Susan Nash - this is interesting. Do you know anyone who has had success with supplements? 

My doctor has just said to me that she has noticed a lot of celiac ladies have thinner hair in later life.  Obviously, that is just her observation. But I am going to ask for some vitamin and mineral testing so I can supplement any shortfall in case that is a problem.  I also am iron anemic which I'm sure isn't helping.  

I have also read it is important that people who are worried about hair loss make sure they are eating enough protein.

[Stacy0w]

My endo appt was yesterday. Figured I'd update. I asked about iron and she said what was already run showed no reason to believe it's an iron problem. Asked about biotin and she said tests aren't that accurate and if after ruling out a few things I'm still having trouble I can try a biotin supplement. I asked about thyroid and she said all the proper labs were run and she doesn't believe it to be thyroid related. Asked a bout zinc and she said most times if zinc is really deficient you'll have sores in the corners of your mouth/lips. I don't so she ruled that out too. Tomorrow at 8am I go for lab work. She's having me test cortisol (mine was normal but low last time), dhea, vitamin a, ACTH and estradiol.  I'll update when the results come back. Figure it might help someone. 

[cyclinglady]

Stacy,

When was the last time a doctor touched your neck and physically checked your thyroid for enlargement (that would prompt an ultrasound for sure)?  Also, like celiac disease antibodies, you can develop thyroid antibodies at anytime.  With a celiac disease diagnosis, those should be checked occassionally.  Not sure when you last had those tested.  You can have Hashi's and be normal on your lab tests (excluding antibodies).  

I hope they figure it out!  

[icelandgirl]

Hi Stacy,

I'm sorry that you still don't have answers...how frustrating!

I do believe that you could use some thyroid replacement medication.  To feel good, your levels need to be optimal, that means FT3 and FT4 are 50-75% of the range.  Your FT4 is at 26% of the range as of your August results and your FT3 is at 10%!  That's your energy and good hair hormone.  Seriously, ask if your Dr will let you try a small dose?

Here's a good article on hair loss.

Open Original Shared Link

[Stacy0w]

Cyclinglady - actually the endocrinologist felt it and noticed nothing. Before that no one had touched it. I went back and checked and had my antibodies tested 8/31. Well within range. 

 

Icelandgirl - I didn't know the percentages so that's interesting. And as crazy as it may be even after several dr appts and my endo appt and four sets of labs I'm still not sold it isn't thyroid related. If today's labs (nonthyroid - adrenals and hormones)  come back "normal" I'll most definitely push the thyroid med question. It's been months. Very frustrating. Said all results should be back in five business days, but some as early as tomorrow. I'll update.

[cyclinglady]

Dumb question.  When was the last time you were tested for celiac antibodies?  celiac disease symptoms can wax and wane.  Maybe this is all due to some hidden gluten exposure?  

[Stacy0w]

I only ever tested positive for the gliadin iga ab. I was diagnosed almost two years ago. I've asked a nurse practioner, a dr and the endo about retesting it and was told by each that once you have the antibodies you always have them so retesting isn't necessary. Ugh. I'm so aggravated because I assume they know at least a little bit and it seems I just keep getting bad info. I know I was glutened about a week ago so now I don't know if retesting at the moment would be helpful or not. 

[cyclinglady]

I think you may have your answer.  You could have had elevated antibodies.  I only tested positive on the DGP IGA, so now my GI only orders it (instead of the entire panel) to save money and because he knows the rest will come out negative (had the celiac antibodies  test several times now since my dx -- biopsies: Marsh Stage IIIB).  

When I was diagnosed, anemia was my symptom.  Got Glutened last summer and my symptoms were so different.  My antibodies were off the charts after that glutening.  Get re-tested in a six months if you know you were just recently glutened (or test now if you are not sure).  

Why wouldn't your doctor follow the standard level of care for celiac disease and test you annually (if not more often if symptoms persist?  Time for a  new doctor?  

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