I Think I Might Have Hashimoto's - What Test Should I Ask For?

[cyclinglady]

Yep, you might not have Hashi's or you might, but first, you need to resolve your Vitamin D and Ferritin levels. Solve one issue at a time. I stopped supplements six months after my dx because my levels improved to normal. I get most of my nutrients from whole foods and take calcium, magnesium and Vitamin D in one supplement for osteoporosis. That is it!

Has a Vitamin b-12 level been ordered?

Have you had any follow-up celiac disease blood testing to insure you are compliant? Are you in a 100% gluten-free household?

[icelandgirl]

That's discouraging isn't it? (((Hugs))). The ferritin and D are definitely low. Did he give you an amount to take to supplement?

As far as the thyroid stuff goes...The #s are within range. The free T4 is pretty low unless your reference range is really different from mine. Mine is usually around 1.35. But none of that means you do or don't have Hashis. If it were me I'd still request the free T3 and thyroid antibodies...but that's just me. I have this need to know. Lol!

I'm frustrated for you...it's got to be hard to have the nutritional deficiencies not improving. You always want to see improvement. Maybe something is going around causing frustration...I've got a lot of that going on too!

[HavaneseMom]

Hi cyclinglady - It is so great that you were able to get you nutritional deficiencies corrected so quickly and were able to stop supplementing! I am going to work hard extra hard now to get my numbers up through supplements and food. I have had my B-12 tested and i was pleasantly surprised it was pretty high at around 700. I last had my Celiac panel ran about 10 months ago and everything looked great, I'm due for another in a couple of months. My husband does eat gluten, but his gluten prep area is on the far corner counter of the kitchen and everything is segregated as recommended for a safe shared kitchen. We are very careful about it and no kisses are given until he brushes his teeth and rinses very well

icelandgirl - It is pretty discouraging! My regular doctor told me to take 5000iu Vitamin D3 for two months, then have my levels re-tested to see where to go from there. My gastro doctor was the one who ordered the Ferritin and he hadn't had a chance to review my results yet when I called for them, so I don't know what he will want me to take. I can come back and let you know when I find out because I know you are in the low Ferritin club and might be curious to know what is recommended. I am still going to push for the additional thyroid test because I do want to know that there isn't anything else going on there. Sorry to hear you are frustrated too!

I know this topic started off heading in one direction and is ending up in a completely different direction, so thank you to everyone for helping me sort all of this out!

I have been racking my brain trying to figure out why my levels dropped, and have been researching like crazy today and I think I realized what the problem likely is. I am taking Nexium everyday and have been for the past 5 years. I know, I know...it's bad stuff. Pre-diagnosis I woke up one day with what felt like a flame torch blowing up my throat. It was so bad and painful that I couldn't function, so I was prescribed a Proton Pump Inhibitor. There was some visible tissue irritation in my esophagus when I was scoped so my GI doc told me to keep taking them to avoid Barrett's Esophagus. I have tried to get off them a handful of times and the burning and pain comes back. I take the lowest dose possibly, but it is very likely enough to keep me from absorbing nutrients. I'm going to try to wean off of them again and look for some natural alternatives to help along the way.

[icelandgirl]

I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.

Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.

I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.

[HavaneseMom]

I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.

Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.

I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.

Hi icelandgirl,

I have calls in to both of the doctors to find out what I should take for my low Ferritin and will come back and let you know what they say as soon as I hear back from them.

Yep, I have read a lot of info saying that long term use of PPI's can stop you from absorbing nutrients. I think it has something to do with there not being enough acid in the stomach to break food down, so nutrients can't be absorbed. My GI docs nurse tried to tell me today that it's very rare for that to happen and that the doctor thinks my Ferritin is down because I must be eating gluten. This obviously made me very upset, since I am obsessed about being gluten free and protecting myself from hidden gluten sources. I am one of us celiacs who never even eats out because I won't risk the chance of cross-contamination. I put in a request to have my celiac panel tested just in case something is going on, but mostly because I want to prove him wrong. I wish he would have run the celiac panel first before accusing me of sneaking gluten. I would never ever sneak gluten.

I will try your tips for weaning off PPI's. I have been on them for so long now that I know it's going to be tough, but I know it is something I have to do to improve my overall health.

Thanks so much for the very sweet offer to PM you if I ever need to

[cyclinglady]

Wow! The drug info on PubMed specifically says your PPI interferes with many drugs including the absorption of iron! No wonder your ferritin levels have not improved!

[HavaneseMom]

Wow! The drug info on PubMed specifically says your PPI interferes with many drugs including the absorption of iron! No wonder your ferritin levels have not improved!

Yes! That is what I was thinking too. I don't know why the nurse at my GI's office said it's not likely the cause. Everything I have read says it very well could be.

Could you tell me where I can find the PubMed info you referenced. I would love to read it.

Thanks

[HavaneseMom]

I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.

Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.

I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.

Hi icelandgirl,

I heard back from both of the doctors nurses following up on the low Ferritin. My regular doc said to keep supplementing, but when I asked his nurse if he said how much I should take, she said he didn't and to just do whatever I can to boost it up.

My gastro doctor threw me for a loop and wants to do a follow up endoscopy and biopsy to see if they can find out why I'm not absorbing nutrients better yet. I'm not sure if he is thinking it could be refractory sprue or what, but I think it's still too early in the healing process to be worried about that, so I am going to put that off for a while longer. When I called in I had asked the nurse to ask the doc what I should be taking to raise my Ferritn at this point, but when she called me back she said there was nothing about it in his notes and to keep taking a supplement. She did say that they typically see a very slow improvement of Ferritin in Celiac patients.

Sorry I don't have better suggestions from either if them to share with you to increase your Ferritin.

I guess this is the downside of trying to bypass another appointment and do things over the phone. The info gets passed back and forth between the nurse and the doctor and the original question didn't get answered

[icelandgirl]

Thanks havanesemom...totally agree on the frustration. I had a call in to my Dr about something and when the nurse called back it was quite obvious that something had been lost in the relaying of messages. Argh! I hope you have good luck getting your levels back up...any progress on getting off the ppi?

[cyclinglady]

Yes! That is what I was thinking too. I don't know why the nurse at my GI's office said it's not likely the cause. Everything I have read says it very well could be.

Could you tell me where I can find the PubMed info you referenced. I would love to read it.

Thanks

I can not find it but found another when I goggled low ferritin and PPI/Nexium:

Open Original Shared Link

Looks like PPI affect bones too!

This is not a good drug when you are recovering from celiac disease.