Question for those with thyroid issues....

[mothergooseof4]

I have Hashimotos disease. I was diagnosed about 4 years ago. For the first two years I had my Levoxyl increased every three months. I could feel that I was hypo and would ask for blood work. I leveled off about two years ago when I started treatment with my chiro that also practices natural medicine and have been on the same dosage since.

 

I recently started experiencing hypo symptoms again and asked for bloodwork. My doc's nurse just called and said that I am actually hyper and my doc wants to lower my dosage. I checked the symptoms for hyper thyroid and some are the same......hair loss, heart palpatations, fatigue. But, some are definitely not....like I have gained weight and my digestion has SLOWED WAY DOWN lately.

 

Is it normal to be hyper yet gain weight and have slower digestion? From everything I read, these are hypo symptoms. I am tempted to ask to repeat the bloodwork because I was fully expecting an increase in dosage.

[JudyJudyJudy]

You won't necessarily have all the symptoms of hypo- or hyper-. My diagnosis is also Hashimoto's, yet I was quite thin when I was diagnosed. In fact, I had a difficult time getting my GP to diagnose me because I didn't have all the "right" symptoms. I had had problems for decades, and looking back, it is obvious that my levels were up and down throughout the years.

 

One endocrinologist told me that she was quite sure that I have both Hashimoto's and Graves', but she didn't bother to test me for Graves' because she said that either way she'd treat me based on my symptoms. I have both diseases in my immediate family, so it is quite likely.

 

When I first began taking thyroid meds in 1999, I actually felt better, but that didn't last. For years after that, I always felt "off" even when my numbers showed otherwise.

 

Please don't take the next statement as my "recommending" this, but I will tell you that after I started the diet that I'm on (yeast-free, gluten-free) in early 2009, I slowly weaned myself off my thyroid meds. I've been med-free for two years now, and I feel better than I did for at least eight years prior to that. There is a link between gluten and autoimmune disorders, so what I will recommend is that you consider a gluten-free diet to see if it helps you any. I hope you're feeling better soon.

[melmichigan]

I have Hashimotos disease. I was diagnosed about 4 years ago. For the first two years I had my Levoxyl increased every three months. I could feel that I was hypo and would ask for blood work. I leveled off about two years ago when I started treatment with my chiro that also practices natural medicine and have been on the same dosage since.

 

I recently started experiencing hypo symptoms again and asked for bloodwork. My doc's nurse just called and said that I am actually hyper and my doc wants to lower my dosage. I checked the symptoms for hyper thyroid and some are the same......hair loss, heart palpatations, fatigue. But, some are definitely not....like I have gained weight and my digestion has SLOWED WAY DOWN lately.

 

Is it normal to be hyper yet gain weight and have slower digestion? From everything I read, these are hypo symptoms. I am tempted to ask to repeat the bloodwork because I was fully expecting an increase in dosage.

 

I would ask for a recheck and a copy of the results. I have noticed much more of a difference in local labs lately, what is normal for one is not for the other. Today I was looking over my DD's blood results and at this particular lab 0.27 was the low end of normal on their TSH.

[LaxMom]

You may also be thyroid resistant. My doc was saying that, since your TSH only indicates whether your pituitary is detecting enough thyroid hormone, it doesn't mean the rest of your tissues are getting enough.

 

Your pituitary may be detecting adequate T4 but you may not be able to convert that to T3, the usable form of hormone. Adding cytomel (synthetic T3, levoxyl is T4 only) may help.

 

Or, it could be something else. Adrenal, other hormonal, etc. Autoimmune diseases, like Hashimoto's, put your body under a lot of stress and I'm not convinced they're limited to just attacking/damaging an isolated area.

[Veritaserum]

I would ask for a recheck and a copy of the results. I have noticed much more of a difference in local labs lately, what is normal for one is not for the other. Today I was looking over my DD's blood results and at this particular lab 0.27 was the low end of normal on their TSH.

 

:iagree: I have Hashi's and Graves' (lucky me!), but so far I have only been hypo. My Synthroid has stayed steady for the past 18 months. I thought I was hypo in Feb., but I was actually anemic instead (similar symptoms). My TSH was slightly lower than it had been at my last endo visit. Since I started treating my anemia (Ultimate Iron by Enzymatic Therapies), I feel good again. :)

[LG Gone Wild]

Yes to a degree. I was hyper with Graves Disease and gained weight and was depressed (hypo symptoms). I recently got off Levoxyl and went with a brand name - Tirosint. More consistent levels.

[JudyJudyJudy]

Yes to a degree. I was hyper with Graves Disease and gained weight and was depressed (hypo symptoms). I recently got off Levoxyl and went with a brand name - Tirosint. More consistent levels.

I'm so happy to read this. My sister has Graves', and she had RAI twice (long, horrible story :(), so she essentially has no thyroid. She's tried at least four different meds, and she still feels bad all the time. Both she and I read about Tirosint, but we couldn't find any personal stories about it. I'll have to tell her about this.

 

How long have you been taking it?

[Peela]

You won't necessarily have all the symptoms of hypo- or hyper-. My diagnosis is also Hashimoto's, yet I was quite thin when I was diagnosed. In fact, I had a difficult time getting my GP to diagnose me because I didn't have all the "right" symptoms. I had had problems for decades, and looking back, it is obvious that my levels were up and down throughout the years.

 

One endocrinologist told me that she was quite sure that I have both Hashimoto's and Graves', but she didn't bother to test me for Graves' because she said that either way she'd treat me based on my symptoms. I have both diseases in my immediate family, so it is quite likely.

 

When I first began taking thyroid meds in 1999, I actually felt better, but that didn't last. For years after that, I always felt "off" even when my numbers showed otherwise.

 

Please don't take the next statement as my "recommending" this, but I will tell you that after I started the diet that I'm on (yeast-free, gluten-free) in early 2009, I slowly weaned myself off my thyroid meds. I've been med-free for two years now, and I feel better than I did for at least eight years prior to that. There is a link between gluten and autoimmune disorders, so what I will recommend is that you consider a gluten-free diet to see if it helps you any. I hope you're feeling better soon.

 

Lol, this is me too except I haven't gone on thyroid meds. My weight is normal yet I have hashimotos. I think I fluctuate between hypo and hyper but not too wildly yet- it tends to be progressive disease (my antibody levels are high), though, and my parents both have it. I am glad I caught it when I did.

I have been gluten free for several months- and I feel sooo much better. All my joint pains have gone. I never had any gut symptoms from gluten but I just feel better. So much so that going gluten free really doesn't seem too hard at all- but dh is gluten free too so that helps.

I will say I am chronically low ferritin- even with supplementation- so I am working on gut issues now too. I had a stool test which showed my bowel bacteria is messed up so I am treating that right now. Low iron can give similar symptoms to low thyroid, and is often seen together.

[LG Gone Wild]

I'm so happy to read this. My sister has Graves', and she had RAI twice (long, horrible story :(), so she essentially has no thyroid. She's tried at least four different meds, and she still feels bad all the time. Both she and I read about Tirosint, but we couldn't find any personal stories about it. I'll have to tell her about this.

 

How long have you been taking it?

 

One month. I was really afraid to start a new medicine because I have tried several with unpleasant side effects.

 

I do have some from Tirosint - hair loss (but that might be from being hypo as well) and insomnia. I take melatonin or whiskey and my progesterone cream and I do fine.

[snickelfritz]

and insomnia. I take melatonin or whiskey

Ok, this just tickled me.:)

 

 

My thyroid swings a while, then stabilizes. I go in for hyper symptoms, just to find it's gone back hypo and they need to up my meds.

[Endorphins]

I have Hashi's, too. When I'm hyper, I'm "supercharged" and the only thing that will make it manageable is running on the treadmill 3 times a day (and I'm not exactly a svelte running machine LOL). Not fun. I have yet to swing back to hyper now that I'm on natural meds and am on an anti-inflammatory diet (Paleo...go to http://www.paleonu.com for more info). It's gluten-free and low carb. The anti-inflammatory diet is so unbelievably important, as one auto-immune disease typically begets another. I really don't want to end up with MS, Sojourn's or anything else if I can help it, KWIM?

 

What are your lab readings (and ranges)? Does your doc test FREE T3 & FREE T4? If they're only testing TSH and/or regular T4, I wouldn't let them touch my dosage with a ten foot pole. Have you considered going with natural desiccated thyroid? Sounds to me like your T3 is way off and your T4 may be too high and NDT typically works very well for us auto-immuners as it has a "perfect" balance of all necessary thyroid hormones and is more readily accessible by our bodies. That's not to say that synthetic doesn't or won't work, but some people clearly do better on natural than synthetic and vice versa.

 

If you haven't yet, you should go browse http://www.stopthethyroidmadness.com . Also, look for a yahoo group for thyroid in your state.

[prairiewindmomma]

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Edited November 10, 2021 by prairiewindmomma

[JudyJudyJudy]

One month. I was really afraid to start a new medicine because I have tried several with unpleasant side effects.

 

I do have some from Tirosint - hair loss (but that might be from being hypo as well) and insomnia. I take melatonin or whiskey and my progesterone cream and I do fine.

Thanks! And your post tickled me. LOL

[mothergooseof4]

Thanks all. The nurse was calling to tell me the results and ask if I was taking my meds as prescribed. She was going to let doc know and then see what she says.

 

My TSH was 0.2. I forgot to ask about T3, but it is normally right on track when my TSH is normal. She likes to keep my TSH around 1-1.5.

 

I have never heard her say anything about my antibodies. I will ask about this as well.

 

I have been praying that God would heal this issue. Maybe I am on the way to healing and my meds are just needing to be decreased!!!!!

 

I will admit, when I am eating low carb, I feel the best. I have never gone gluten free....that would be soooooo hard for me. I love baking my own bread.

 

My current symptoms are extreme fatigue, weight gain (I am only talking about 3 lbs here), dry skin, blurry vision, light headed, constipation, hair loss, increased sweating, and probably more if I think about it. I do also tend to run hypoglycemic if I don't eat right and I fight adrenal fatigue but am taking supplements.

[JudyJudyJudy]

Thanks all. The nurse was calling to tell me the results and ask if I was taking my meds as prescribed. She was going to let doc know and then see what she says.

 

My TSH was 0.2. I forgot to ask about T3, but it is normally right on track when my TSH is normal. She likes to keep my TSH around 1-1.5.

 

I have never heard her say anything about my antibodies. I will ask about this as well.

 

I have been praying that God would heal this issue. Maybe I am on the way to healing and my meds are just needing to be decreased!!!!!

 

I will admit, when I am eating low carb, I feel the best. I have never gone gluten free....that would be soooooo hard for me. I love baking my own bread.

 

My current symptoms are extreme fatigue, weight gain (I am only talking about 3 lbs here), dry skin, blurry vision, light headed, constipation, hair loss, increased sweating, and probably more if I think about it. I do also tend to run hypoglycemic if I don't eat right and I fight adrenal fatigue but am taking supplements.

I know it's not something that you want to do (I didn't, either), but it sounds as though you could benefit from going both gluten-free and yeast-free. I fought it for many years because it was "too hard." It took my almost being unable to get out of bed before I was finally motivated to do something (I don't recommend letting it get that bad!). Chemical exposure was another problem for me (I have extreme chemical sensitivities), so I also had to make a bigger effort to avoid fragrances and other harmful chemicals.

 

I can't say that I'm in great health now, but the improvement has been amazing. I feel so much better than I did before that I'm no longer even tempted to eat yeast and gluten; it's just not worth it. I have been gluten-free and yeast-free (and lots of other stuff–free, too) for over 2.5 years now.

[Endorphins]

I used to bake my own bread, too, on a daily basis. It's totally do-able to cut it out and actually, I don't even miss it anymore. Never thought I would say that, but it's true! What I discovered I loved was the melted butter ON the bread. LOL I do still love the smell, but it's not difficult to stay away from it anymore.

 

Your TSH should be suppressed way more than that. As low as it will go. We have an increased risk of cancer and the TSH is stimulating that. It's common knowledge in the medical field that thyroid cancer patients MUST completely suppress TSH, yet they insist that even though our bodies are fighting our thyroid (as we see with the antibodies as an indicator), we don't need to worry about that. Do your own research on this and go with your gut. It's your body, it's your LIFE, and unfortunately, the state of the medical endocrinology field is archaic, to say the least.

 

Your symptoms are totally hypo. Most of those symptoms are symptoms of low T3. The low carb should eliminate the hypoglycemia. The lower carb you go, the more even your blood sugar will be. Ketosis is our friend.

 

Have you looked at Dr. Wilson's protocol for adrenal disfunction? I didn't purchase anything from him, but did follow his recommendations along with taking Isocort (OTC) and was very successful even after going through near adrenal failure.

 

I hope this helps and I apologize if I come off a little strong on this. I spent the last 15 years going undiagnosed because of doctors lack of knowledge. And I had, what I consider, to be some pretty decent doctors. After getting so sick with hypo and adrenal fatigue that I was unable to get out of bed for months, I wasn't going to accept another statement of "your TSH and T4 look fine, it must be in your head." It's hard to find a doctor that is knowledgable on the modern diagnosis and treatment of endocrine issues (even diabetes!) and that, to me, is infuriating.

[Alyeska]

You may also be thyroid resistant. My doc was saying that, since your TSH only indicates whether your pituitary is detecting enough thyroid hormone, it doesn't mean the rest of your tissues are getting enough.

 

Your pituitary may be detecting adequate T4 but you may not be able to convert that to T3, the usable form of hormone. Adding cytomel (synthetic T3, levoxyl is T4 only) may help.

 

Or, it could be something else. Adrenal, other hormonal, etc. Autoimmune diseases, like Hashimoto's, put your body under a lot of stress and I'm not convinced they're limited to just attacking/damaging an isolated area.

 

I second this...your lab results can read that your TSH is 'normal', but it won't tell you if your body is converting and using the horomones unless you have complete labwork done. Have them run a FULL thyroid panel and maybe that will clue them in to what is wrong.

 

Hope you get an answer! I've had Hashimotos for 12 years and it took me 8 years to get a doctor to actually listen to me when I said I didn't feel 'right'. And it took me months to convince said doctor to adjust my meds.

[zookeeper]

I agree with this. My dr likes to keep my TSH at <0.1 as long as my FT3 level is in top quarter of the range. It's where I feel the best.