Hashi's and low vitamin D..is there a link?

[MsModelSara]

Hello everyone.  I'm hoping someone may have some insight that I can bring with me as "ammo" to a doctor.I was diagnosed fonally this past year with Hashimoto's after suffering with symptoms for 10 years or so.  I got my hypothyroidism diagnosis about 5 years ago, and even at that the Dr. almost didn't want to put me on meds since I was so borderline.  As it progressed over the years my dosage has slowly risen and I at one point stopped taking meds all together because I was still experiencing symptoms and say what the heck?!?!  When I started sleeping 20 hours a day again I decided to get back on the meds and the Dr. had me on a dose to keep my tsh at about a 4-5 range.  Still pretty bad.  I fought for my endocrinologist referral and got it finally.  She tested my thyroid levels and increased my dosage a tiny bit but was reluctant as well to treat me as i was "borderline" and my symptoms were in my head.  I convinced her to do more background testing so she tested my antibodies. Lo and behold....they were at 284.  WAY too high.  Congratulations, you have an autoimmune condition..let's up your dosage and get your tsh down inbetween 1-2 now.  *shaking my head*

Since about 2 years ago, with me constantly complaining about being tired all the time I was tested for my vitamin D levels..they were at about a 19 or so before I was put on 50,000 IU once a month.   I was rechecked a few weeks back and despite taking 50,000 once a month it is back down to about 19...so now i have to take 50,000 IU twice a month.  What gives?  I am fatigued, losing a bit more hair than a few months ago....I was talking to my Mom who is a nurse and she mentioned hyperparthyroidism.  Is it possible for me to get this?  

I'm just looking for ideas to take with me to the Dr to demand more testing to find out what the cause of my low D levels are.

Thanks in advance and I apologize for the lengthy post.

[Lori707]

I just went to a neurologist who specializes in neuropothies caused by celiac or lymes disease. I just came off a PICC line of IV antibiotics for my lymes. This doctor said he thinks I also may have celiac because of my digestive problems,etc. He's testing me for it. Also my mother has digestive problems and my grandmother had them. We all experienced it since birth.
No doctor can give me a reason why my PTH is high. (Parathyroidism). If anyone has a clue about this, please post it.

Thanks!!

[MsModelSara]

I can see how your post about the Vitamin D makes sense...sitting in the sun to make D. However, I don't want skin cancer or wrinkles so I never go outdoors without wearing a hig spr which I know makes my D deficiency worse....but there has to be a way to get it up otherwise.  I thought taking the rx D was what I needed as I wouldn't think a dr would prescribe a form of vitamin D we can't store when we are deficient...? I will look in to that though.

[MsModelSara]

From what I understand by other people telling me as well as my endocrinologist: when you have one autoimmune condition, you are MUCH more likely to contract others.  Celiac disease is one of the most common with Hashi's. And even if you arwnt full blown celiac...you may stil have an intolerance to gluten that brings on your autoimmune attacks on your thyroid makin your Hashi's worse. My endo has told me that by putting her thyroid patients on a gluten free diet, many have come off their meds.

I ignored this info a few months ago when she told me...but I'm listening now. As for the vitamin D, I don't have all the answers. I'm still trying to get them myself as I'm taking a lot of it and I'm still deficient @19. I have learned it is a fat soluable vitamin, and if your liver is toxic you won't be able to metabolize and store it. I just did a quick 2 week liver cleanse with supplements that support healthy liver function and fiber to get some toxins out and bind it to fiber to flush them out. We also have to be careful because my mom (who is a nurse) reminded me that when you are constantly taking meds daily as we are, you must check liver function which most doctors don't monitor.

[corky21]

Taking the RX 50,000 iu is the D2 form, not D3 and what we get from the sun. That RX tends to boost your levels, but then when you come off, it goes back down. I read that it's better to take D3, 20iu per one pound of body weight and recheck levels every few months. Also stay in the sun around 12-3pm (except your face) for as long as it takes to turn your skin a little pink. Then apply sunscreen. The sun will store up your D level but only for a few months, then if you are out of the sun it was plummet again, so you will need to keep supplementing.

My D level was 28 (2 under the low/normal) and I believe a level over 50, to about 70 is the best to try and stay stable at. I started taking 4000 iu a day and after 3 months my level got up to 47, then I did 6000 iu until the summer and it was 57. I haven't tested it lately, but I take about 4000 a day during the sunny weather.

I don't know why some of us cannot store or get enough D from our foods, etc., maybe it is a stomach thing? I have hiatus hernia now 15 years and just diagnosed with esophagitis and dudonitis and I'm back on Proton Pump medication which stops the acid in the stomach so the conditions don't worsen to cancer.

I am thinking the medication all these years caused my thyroid and muscle problems because of lack of nutrients due to the stomach thing. My doctor told me to take the PPi every day for life so I have been.

These doctors are all stupid! I have no choice but to take it again, but I try to take it every other day or every two days. If I get burning, I go back to taking it every day.

So frustrating this disease.

[Lori707]

I was just diagnosed with Hashi's and hypo and put on Synthroid. I heard in other places that Hashi people should not eat gluten.
Why? I'm curious as to why gluten is associated with Hashi.

Also, my Vit.D was 8.5 and I got osteoporosis. I'm currently taking a lot of D for I think over a year and I'm still around the 24 mark. My endocronologist says my body isn't absorbing the D. I really don't understand all this.

Thanks!

[MsModelSara]

Thank you for your feedback as well.  My endo told me that her Hypothyroid patients that she has go gluten free many times are able to come off of taking levothyroxine, which I would be so grateful for!  I had my blood count done March 1 and I'm not anemic (but I am watched for that because I'm well aware of that danger..I have been anemic on and off since birth) but I don't believe I've ever had my b12 checked unless it's labeled some weird thing on lab results?  All the letters on some of the values are confusing to me and I don't understand most of what is tested. I was tested for celiac the same day I was tested for Hashi's antibodies...and that came out negative.  But I think I may have gluten intolerance though, just not full blown celiac.  Because when I eat I get tired, bloated, gassy and sometimes bad cramps.  It's always been that way.  When I did Atkins I felt amazing!  But gained weight back when I added carbs back in on the maintenance phase so I gave up with that.

As for eating gluten if your are celiac...yes it can be life threatening over time because the allergic reaction in the body from eating gluten kills the villi in your intestines so you aren't able to absorb vitamins and nutrients from food.  Not to mention it's extremely painful.

[Vic2009]

Oh yeah, ditto on the iron and B-12 -- I was deficient in both and they make a big difference in energy.

[Vic2009]

FYI, I saw someone mention on here that a gluten free diet made her hyper (she had to lower her thyroid dosage) and I just tried going gluten free for 2 days and sure enough what followed was a night of wake-ups, sweating, palpitations, etc -- hyper.  Now I'm still recovering from that.  My system is extremely sensitive so that may not happen to others as easily, but that was what happened to me.  

I have done gluten free when my situation has been horrible in the past (likely hypo) and it helped, but it's a fairly huge lifestyle change depending on how important food is to you.  I literally DREAM about food.  So for me, I'd rather -- at this point -- be at a higher dosage and eat wheat and gluten, then go gluten free and never have another pastry, ravioli, etc.  Of course there are replacements for most things, but often I'm not happy with them.

It all just depends on what's important.  However I don't know if there are long-term consequences to eating gluten if you have celiacs.  I've always tested negative, but when I stop wheat, it does make a difference.

[MsModelSara]

Thank you!! I will check out that book. How did you go about going gluten free? My endo has suggested putting me on a gluten free diet, but its so intimidating to me.