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Hashimoto's/iron deficiency?

von

By von
in Related Issues & Disorders

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von Apprentice
von
Posted

Hi guys! I've been struggling with my health for the past 5 years (I'm 24 now) so I'm just hoping I can get some advice from those in similar situations. Sorry if this explanation gets really long! Just trying to get this off my chest because I can't seem to find a doctor who's interested in anything but test results.

I was diagnosed with celiac disease 2 years ago. I never really noticed any of the typical digestive symptoms but I was always extremely tired and despite being a good student and interested in the topic I would fall asleep in class every day (regardless of how much I slept the night before!) The gluten free diet did help my energy but I have recently noticed my energy very low again to the point where I feel almost depressed some times. I don't have the energy to do anything after work (besides watch tv and end up falling asleep on the couch!) so I feel my social life is suffering - especially because I feel I don't have much of a personality anymore because of the fatigue. I kind of just feel like a zombie and my coworkers and I joke about it. My coworkers will laugh when they see me at the desk with my eyes half open staring into space as I struggle to stay awake! I joke about it with them but I know there is some underlying issue going on.

When they did the celiac blood test 2 years ago they also found out I have Hashimoto's (antibodies over 1200). I was diagnosed with hypothyroid first when I was 16 but only took synthroid for 6 months-1 year before the doctor said I was back to normal and to stop taking it. Same story about a year ago. They recently changed the normal range for TSH here to 5.04 so right now I'm at a 4.22 which isn't out of range so they won't treat me for it even though I know I feel so many of the hypothyroid symptoms. I've talked to 2 different doctors about why I have Hashimoto's but they won't treat it. I asked them if I'm just supposed to wait for my body to keep attacking my thyroid until it goes out of range again and they said yes! I've suffered from iron deficiency for years and they always point to that as the cause of my health problems. I'm sure it definitely plays a role but I just know there's something else going on!

Sorry for my ramblings I'm just wondering if anyone else has had a similar experience or dealt with chronic fatigue even after diagnosis and had any solutions.

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Lyss Newbie
Lyss
Posted

You have to go strictly grain-free with hypothyroidism. Only then will your thyroid be able to heal. I used to haven hashimotos/hypothyroidism until I went completely grain-free. Now my numbers are normal and I feel like a healthy human being again. Hope you get it figured out! 

cyclinglady Grand Master
cyclinglady
Posted

Yes!  Lab ranges vary and are based on the population.  Per an old doctor, he said that the range was much lower 40 years ago (1 to 3 for TSH).  It speculated that TSH ranges increased due to more hypothyroidism.  So, what to do?  Find a doctor who would be willing to prescribe a small dosage if thyroid replacement.  Here is a link that discusses the thyroid range controversy.  I would recommend more research and not just trust some lady on a forum.  It is a place to start.  Look for real sites and not fake sites/blogs.  

Open Original Shared Link

Personally, my TSH needs to be close to a 1.  Any less and I can run hyper which is not good for my bones which have been compromised by celiac disease.  Any more and I am hypo and am forced to nap.  My PCP looks at my TSH and other thyroid results and asks me how I feel.  Together, we manage my Hashi's.  I also prefer Armour (from a pig) over synthetic.  Everyone is different.  

cyclinglady Grand Master
cyclinglady
Posted

Oh, make sure your celiac disease is not active and you are not anemic again.  Just something else to consider for your fatigue.  It is not always just one thing.  

Victoria1234 Experienced
Victoria1234
Posted
2 hours ago, cyclinglady said:

Oh, make sure your celiac disease is not active and you are not anemic again.  Just something else to consider for your fatigue.  It is not always just one thing.  

Have you ever had a sleep study? Like CL says, you might have more than one thing going on. You sound like me before I was diagnosed with sleep apnea. I couldn't keep my eyes open, despite getting enough sleep. They usually arrange it so it only costs the price of a copay to a specialist. If it is sleep apnea, using a Cpap is easy and it will fix you right up. Feels amazing not to be super tired all the time. SA can kill you if not treated with cpap. Rare cases yes, but I know someone who did.

Gemini Experienced
Gemini
Posted

Hi von........take a look at this website.  There's a lot of information but their message is pretty accurate and these are things that your doctor will never discuss with you.  They don't have time and that's why people like us with Celiac and Hashi's need to do our own homework and work hard to find the right doctor.  I had the same problem as you 25 years ago and ended up going to a functional medicine MD for treatment instead of endocrinologists because Endo's aren't much help at all.  If you have Hashi's and your TSH is a 4.22, then you need to take thyroid hormone, period.  It makes all the difference in the world.  They have a page on the site that links you to how to find a doctor who will help.

Open Original Shared Link

Any questions?  Feel free to ask!  :)

Guest
Guest
Posted

Just take 25 mcg of levothyroxine and see if u feel good and check again your tsh after a month or two. 

 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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