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  • SueAndHerZoo
    Post count: 439

    Hi Gang (both old and new).

    In a nutshell, I’ve been feeling more and more lousy for the past few weeks and in checking my records (I chart everything!) I find that all of my symptoms are the same things I feel whenever I change doses of Synthroid. At first I was thrilled to make the discovery but immediately was disappointed because I have NOT changed my dose in over a year! But the symptoms don’t lie, and this is how I used to feel when changing so I had blood drawn this morning.

    Tonight when I got home from work I decided to check with Dr. Google to see what may have inadvertenly “changed” my dose. BINGO! Did you know that people who go gluten free need less Synthroid because their gluten intolerance is no longer affecting how they absorb the Synthroid? I went gluten-free 8 weeks ago!

    And… while I was reading all this, I found that soy also interferes with the absorption of Synthroid, and guess what else I gave up 8 weeks ago? Soy!!!!

    I sure as hell hope the lab results come in saying I’m over-medicated because it certainly feels like it. I’m actually thinking of skipping a dose tomorrow to try and bring it down a little but I should probably hang in there another few days to see what the lab results say.

    Maybe I’ll take half a Synthroid tomorrow. Hmmmmmm…..
    Sue

    Liz1967
    Post count: 305

    Interested to see what your labs reveal. Gluten sensitivity can cause depression but low carbs can also cause zombie like feelings and depression, so if you have cut carbs a lot since going gluten free, this could affect how you feel. You need carbs to produce seratonin, so unless you have replaced bread, pasta, etc with other hi carb food, you might be feeling the effect of lower seratonin. I feel great first few weeks of low carb, then I crash. If you are not truly sensitive to gluten, it should not affect Synthroid dose. I think you need to eat a lot of soy, like tofu and soy milk, to really affect Synthroid much. Soy is in everything, hard to eliminate it totally, but unless you have suddenly eliminated a lot of soy, your Synthroid dose has already adjusted and shouldnt change much. T4 is converted to T3 mainly in gut and liver, so any changes there can certainly affect your levels.
    Why did you decide to eliminate gluten and soy? Were you feeling bad? At 8 weeks post elimination, you could try a challenge of gluten then soy to see if you are truly sensitive. Eat a large serving of gluten and see what happens in next three days. If you have a huge flare of symptoms, you have a sensitivity. Usually going without the food for a long time and then reintroducing it will elicit a pretty definitive reaction.

    SueAndHerZoo
    Post count: 439

    OMG – I’m freaking out – WTF?!?!?! My lab results are in already (which is great news) and I was actually nervous about opening them. I so desperately wanted them to tell me that I am overmedicated because that’s how I feel so if I got back a “normal” reading it would be really frustrating. Well…. I’m way out of “normal” range, but in the opposite direction!!!!! My TSH is HIGHER than it’s ever been, not lower!

    I’m sitting here at the office totally blown away and confused. (and also mad at myself for jumping the gun and only taking half a Synthroid this morning because I was so sure my TSH would be too LOW).

    In answer to your questions, Liz, I have colitis and have tried several different diets to control it because I hate being on steroids. I was vegan for 6 months so I ate a LOT of soy, but it didn’t help my colitis at all so I went back to meat. Next the doc suggested I try “gluten free” and I actually had some stool testing done that revealed I do react strongly to gluten and soy, thus…. I gave them both up 2 months ago. But why in hell would giving those up cause my TSH to be HIGH when everything I read said giving those up would cause better absorption of Synthroid?

    Sorry, I’m fired up right now and don’t know what to do…. I did NOT see this coming.
    Sue

    Liz1967
    Post count: 305

    Doesnt make sense. Proton pump inhibitors like Prilosec also interfere with T4 a lot. Are you using more of those since being off steroids? Steroids decrease T4 also so still does not make sense, altho I have been on really hi dose steroids and it did not affect my thyroid hormones at all. I cannot take PPIs as they cause stomach polyps, so no idea if they really decrease T4. The only other thing I can think of is that gluten foods are usually fortified with B vitamins so maybe missing those is doing something, although what that could be I have no idea. I think the most important thing about thyroid replacement is consistency. If you want to keep gluten and soy free, maybe you need to just up your Synthroid to compensate for whatever effect it is having on your TSH and be aware if you go back to gluten or soy, another adjustment may be in order. The gut plays an amazing role in immunity and thyroid hormone conversion so having colitis must be a challenge. I have IBS-D and I found Pepcid of all things to stop it cold, more than Immodium even. Thankfully, it is an H2 inhibitor and doesnt affect anything thyroid! Good luck figuring this out. Must really be a difficult dealing with colitis, but at least you can adjust thyroid hormone by adding or subtracting.

    SueAndHerZoo
    Post count: 439

    Thanks for understanding my frustration…. always trying to do the “right thing” for my body but it seems the more I try to get healthy, the more complicated it gets.

    I’m not totally off of steroids, I’m on a corticosteroid and am weaned down to the lowest dose and I may just stay there because I need some CONSISTENCY. Also, when I went off gluten and soy, I added some supplements: B12, multivitamin, and magnesium. God only knows what I’ve done to my TSH levels with all the changes and, you’re right, finding a lifestyle, foods, and supplements that are consistent are the best way to keep my thyroid levels stable. Hopefully this latest plan is it.

    I have no idea why my TSH is high instead of low, but I think I need to stop beating myself up trying to find the answer and just admit that I will never have all the answers to everything. (Lord, help me accept the things I cannot change!)

    Now my question is, and I guess it will be up to my doctor: should I call the doc and ask for the higher dosage of Synthroid or should I ask for a free T3 and T4 test first? I actually only took half a Synthroid this morning and feel better than I have in the past few weeks but maybe that’s coincidence. Still confusing, though.

    Thanks for listening… I guess I’ll be riding this rollercoaster and chasing the curve forever.
    Sue

    Liz1967
    Post count: 305

    For me, I dose solely by TSH. Never get FT3 and I have found FT4 to be inconsistant; i.e. when it should go up with increase in Synthroid, it can actually go down or even stay the same. Only my TSH seems to reflect dose changes accurately. I would bet your doc will call if TSH outside normal limits, but if it is just higher than normal for you, I would for sure call. I keep my TSH between 1 and 2. I just added half of an 88 microgram tab a week (6 mcg per day extra) to get it to 1 as it had been 2.6. I felt fine at 2.6 but I know the ideal for heart health, etc seems to be closer to 1. I feel fine at 1 too but at 3, I would start to notice it. I always wonder if normal thyroids were tested more often what kind of variation would be found. I know prior to Graves, my TSH might be 1.5 one year and 2.5 the next and I would never have noticed anything different. I probably do not need to micromanage it and good thing I only get it tested yearly or I would make myself crazy. If you are noticing symptoms, slowly adding more Synthroid sounds like a good idea as long as you are not changing anything else. Then give it a couple months and recheck. Hope you feel better.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – I’m not clear on whether your labs were done in advance of an upcoming appointment or if they were ordered at your last one.

    If you’ve already had the appointment and the labs were a follow-up, definitely call to ask for some guidance.

    If the appointment is coming up and it’s a ways away, it wouldn’t hurt to put in a call now.

    The GDATF’s Founder, Nancy, tells a story where she tried self-dosing based on how she was feeling. She ended up going in the WRONG direction – and she has a background in healthcare! So always good to bounce these issues off your doc!

    SueAndHerZoo
    Post count: 439

    Hi Guys.
    I always have a lab slip in my car with me so that if I’m feeling “off” I can stop at a lab and have my TSH tested. I saw the results online this morning and it was 6.X (forget exactly). I have NEVER been that high so it explains me feeling off, but I really thought it would be low, NOT high.

    Anyway, when I saw the result I called the doctor’s office to ask if I should:
    1. Increase my dosage
    2. Get additional tests done
    3. Come see the doctor

    The answer when the doc called back was “Don’t change doses, don’t get more testing done, come see me Friday at 11:00.”

    However, this is not my endo…. I stopped seeing him about 2 years ago (never did like him and didn’t feel I needed an expert anymore since I don’t have a thyroid and all I need is lab orders and a scrip) so this is my internal medicine doc. Guess we’ll find out how knowledgable she is about this stuff Friday.

    So… I’ll wait till then, and she’ll probably then order more tests which will drag into next week, and I guess I just hang in there for another week or two. Wish there were a pill for patience. :(
    Sue

    Liz1967
    Post count: 305

    I have read that liquid levothyroxine is better absorbed in people with digestive issues. Maybe you could ask your doc about it. Glad you got a appointment this week, waiting is hard when you feel bad.

    Kimberly
    Online Facilitator
    Post count: 4262

    That’s a good though, @Liz1967 – I don’t know if the actual liquid is available yet (the article below was from Feb. and said 6 months), but Tirosint *is* currently available in a gel cap.

    http://www.empr.com/news/tirosint-sol-hypothyroidism-thyroid-thyroxine/article/638154/

    The down side is that most insurance won’t cover it, so it runs around $70/month – and that’s if you use a specialty pharmacy or if you get coupons (which are only good for 18 refills).

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