[SueAndHerZoo]

in reply to: What do you think of this theory? #1185915

Thanks for the links, Kimberly….. I’ll go check them out right now. Actually I don’t have celiac disease, I am only “gluten intolerant”. I’ve been tested for all types of sensitivities and I’m not severely intolerant to gluten – it just becomes a problem if I ingest a lot of it over a short period of time.

My colitis has been in remission for 9 months (meaning I’m off all colitis meds at the moment) and as long as I behave with my foods, the colitis is manageable. And since I seem to be “hyper” more than “hypo” it seems, if anything, I’m absorbing my Synthroid TOO well. (shrug)

Lucky me for being “super sensitive” to everything that goes into my body, as well as super sensitive to every tiny side effect and symptom. I so appreciate being able to come here to get valuable information and helpful resources….. thanks to everyone for being here.
Sue

[SueAndHerZoo]

in reply to: What do you think of this theory? #1185913

Wow – thank you for that info. I really know very little about mast cells and histamine but it’s definitely something I should learn more about as apparently it affects my TSH and my colitis. I also had no idea there were seasonal fluctuations with thyroid levels – very interesting!

That information will definitely be helpful the next time I see my levels are only a little off and I’m not really experiencing any symptoms, at that point perhaps I’ll wait to stay at the same dose with the expectation that it will regulate as the year goes on. So now to be MUCH more careful with gluten and see how it goes. Thanks again for the reply!
Sue

[SueAndHerZoo]

in reply to: Graves’ Has Destroyed My Life #1185562

I’m sure you’ll get other responses but since I popped in here just because I haven’t in so long, I thought I’d reply. No, Graves Disease is not going to rob you of your life forever. You WILL be able to get your life back. I was diagnosed with Graves several years ago and when I couldn’t control my TSH levels with meds, I opted to have my thyroid removed. Has it made all my problems go away? No, of course not, but do I regret doing it? No.

I still have TSH fluctuations (and am still trying to figure out what causes the ups and downs but I probably never will) so when I feel my TSH is off, I have blood drawn and me and my doctor adjust my Synthroid accordingly.

Am I free of any Graves symptoms? No. I have various symptoms whenever my TSH is either rising or falling, even slightly, I’m incredibly sensitive to the changes. But do they interfere with my daily life? No.

I’m sorry I can’t help you with finding a good doctor but don’t lose help – you WILL get your life back.
Sue

[SueAndHerZoo]

in reply to: Feels like PMS all the time #1185548

Hi. I’m a blast from the past, and it’s so good to see Kimberly still here and running this place. Thank you for that, Kimberly!

I had my thyroid removed in 2013 and I have learned not to discount ANYTHING as a result of my TSH levels. I am sure I’m in the minority here and try as I might all these years, I can’t find many (or any) other people who are as sensitive to TSH fluctuations as I am. I WISH my body wasn’t so darned sensitive to every tiny little shift! But I’ve been tracking my TSH roller-coaster, the different Synthroid dosages, and the corresponding symptoms that go with it. I find a certain set of symptoms that happen every time my TSH changes (doesn’t seem to matter if it’s going higher or lower, just that it’s changing at all) and one of them is that I have pain in my ovary, just the way I did before menopause. I feel like I’m ovulating, and I even have the discharge that goes with it, but ONLY when my TSH is changing.

I have a ton of other symptoms that happen, and when I start to feel 3 or more of them, I go have blood drawn. What frustrates me is that even the tiniest shifts seem to cause this and, as we all know, there are so many things that affect our levels and change them. So I frequently feel this stuff, and then when I change my dose of Synthroid to solve it, I have to go through another 5-6 weeks of side affects as the TSH changes back to where it should be.

There’s not a doctor I’ve met that will give this any credibility, but we know our own bodies and it’s not coincidence this happens every time. So yes, anything is possible – all of us are individuals and our bodies are wired uniquely.
Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185425

Hello Cl14.
I agree with Kimberly, but also what I have found EXTREMELY helpful over the years is to keep a log or journal of how I’m feeling at each medication dose. I have a list of symptoms that I seem to feel when I’m going hyper, and a list of symptoms for when I think I’m going hypo, a list for when I’m simply changing from one to the other, etc. It has helped immensely to look back over it and see if whatever symptoms I’m having coincide with whatever change I’ve recently made.

Also, when you have your blood tested, always ask for a hard copy of the results and on that piece of paper, write down how you were feeling the day you had them drawn. You can then look back over the past bloodwork and see a pattern, see at which TSH levels you felt best, etc.

We have to be our own doctors in dealing with this disease.
Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185420

Liz1967 wrote:

I had one postop TT checkup at six weeks and he did an ultrasound in the office, even tho he was positive he got it all. He had done it preop too. Thyroid cancer patients get followup to be sure nothing at all is left and my doc felt it was just as vital for Graves patients. I think there may other tests like scintigraphy to look for the tiniest of thyroid tissue left behind.

I have just made a note in Things to Discuss with Doc” about this….. what a shocker (and possibly what a shame!) that no doctor has ever even insinuated that I could still be producing some.

I THINK, about a year ago when I expressed my frustration at my crazy fluctuating levels that the doctor mumbled something about “maybe still some thyroid tissue that hasn’t died off yet” and I said “but it was over 3 years ago” and she shrugged and said anything’s possible. I should have pursued it, and I certainly will now!
Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185418

No! I have never had any type of follow-up checking to see if anything remained – neither the surgeon, the endocrinologist, or my GP ever suggested that! That would certainly be a plausible, feasible answer to my fluctuating levels!

I have TSH and free T4 drawn again in about 7 weeks and then see my doc again… if my levels did something crazy again after this recent TINY Snythroid dose change, I will definitely ask if she can order me a test!

Thank you!
Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185416

Hi Kimberly.
I DO alternate doses, and have been doing that for years. Right now I do 88 three times a week and 100 four times a week, then if that’s not right we switch one of the days to the other dose, so all my “tweaks” are very, very tiny, but they still cause huge swings in my TSH.

Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185414

barbra wrote:

Hi Sue,

I’m sorry to hear that you are still “doing the dance”, and I hope you can get settled soon.
I had my TT last August and have been stable on 75 mcg of Synthroid ever since. I can not tolerate the fillers in Levothyroxine, therefore I have to be on the name brand. Could not get stable on Levo.

Hugs.
Barbra.

Hi Barbra.
We switched me to name brand a few years ago so I guess that’s not the issue. Here’s the new one that’s puzzling me: I am so TIRED and weak for the past week that I haven’t even been able to go to the office. Doc says maybe it’s because my TSH is slight elevated but I pointed out that it’s been MUCH higher in the past and I haven’t been this weak and non-functional. We’re running a bunch of other tests but she wants me to raise my Synthroid a little. She also didn’t like the looks of my EKG so getting an echo-cardiogram tomorrow.

Always something, right?
Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185411

Hi Emm…. glad to hear you’ve found some “normal”. So you pretty much stay at the same dose all the time now? that’s my fantasy!
Sue

[SueAndHerZoo]

in reply to: Still fluctuating after all these years #1185409

Hi Liz.
In the past the fluctuations have been pretty severe:

from March to September I went from 2.2 to 6.8,
from September to November I plummeted down to 0.7,
November to January down to 0.6,
then from April to June up to 2.3.

I have a physical Wednesday and she’ll ask how I feel at this level and will ask if I want to tweak the dose some more, but I swear the tweaks are tiny: last time we switched me from 95 mcg a day to 93 mcg a day, and the time before that we changed from 88 mcg to 95 mcg.

I don’t really want to tweak doses right now but the issue is I have all the symptoms of my TSH moving again so maybe in a week or two I’ll have it checked again to see if it’s going higher or lower. Sheesh!

Yes, I wrack my brain trying to figure out what could be interfering with absorption but I’m scrupulous about same time every day, no food or drink for an hour after, etc. I’m on some new meds but they are at least 90 minutes after I take my Synthroid.

Thanks for replying.
Sue

[SueAndHerZoo]

in reply to: Dose change symptoms lessened by tranquilizer? #1185223

Liz1967 wrote:

Sue, to check for hypoglycemia, you need fed not fasting blood glucose. You eat high sugar meal, then blood drawn every hour. Mine plummets at hour two. I cannot even eat Total cereal without nearly passing out a couple hours later. I get really anxious, then dizzy, etc. Thanks Rob for the keto flu info. I had heard of it but since the only symptom I get is depressed mood, I never connected it to what I heard about keto flu.

Tried that. I keep my blood glucose monitor right on the table and have checked it before eating, while eating, an hour later, two hours later, etc. The numbers are always in range, but I’ve read that a rapid change, either way, is what causes my symptoms.

Your symptoms sound similar to mine: first sign is a dizzy spell immediately followed by anxiety (partly from the dizzy spell and partly because of the BG episode). Then within 3-5 minutes I find myself dashing off to the bathroom, and then after that, I crash and am totally wiped out.

Doesn’t happen since I’ve been eating ketogenically, and it feels wonderful not to be dragging myself back to the office wondering how I’ll finish the day.
Sue

[SueAndHerZoo]

in reply to: Dose change symptoms lessened by tranquilizer? #1185221

Great conversation… thanks you guys! I absolutely know that my occasional bouts of anxiety are physiologically based. I can be happy as a clam and fine with driving on highways, but when I start getting panic attacks and feel like fainting on the highway, I know it’s time to get my TSH checked. After decades of dealing with anxiety I know the difference between the type that occurs due to stressful situations and the type that has no valid basis except hormonal imbalance.

I know I should cut myself a break and take a tranq when I feel I could use one but something in me still tells myself to “white knuckle it” and try to tough it out. I have been on 20 mg. of Prozac for over 20 years and doc says it’s probably not even doing anything anymore but that quitting after all this time would be much worse than just staying on it. So I do. She’s even suggested increasing the dosage but I’d rather not.

I, too, believe I am a reactive hypo but my BG numbers are always fine. But before I gave up carbs they would rise and fall quickly which is what caused me to feel lousy. The numbers may not have been extreme, but I believe it was the RAPID rise and fall that made me feel crappy. That problem is pretty much gone now that I gave up carbs.

I agree, AZ…. the magnesium supplements are nasty but I finally found the ones that you can add to your drinking water and it’s almost palatable. (They call it raspberry lemon but that’s a stretch!) I also spray mineral oil on my skin at time and use a magnesium hand lotion.

Carb flu didn’t hit hard at all this time… perhaps because I had already given up gluten months before so it wasn’t that big of a stretch to give up the rest of my carbs.

I think it’s time to get my TSH drawn again…. I’m barely taking off any weight and I’m eating a lot fewer calories than I was when eating carbs. My body just doesn’t want to let go of the pounds lately…. perhaps my dose change wasn’t changed enough.

Thanks for the conversation – very informative!
Sue

[SueAndHerZoo]

in reply to: Ketogenic diet and thyroid #1185214

Sounds like you’ve got this down pat! I’m only 3 weeks in so still experimenting with what to eat and when, and I’m not keto-adjusted yet so I’m sure once I am it will be easier to figure out what to eat, because I’ll be eating so much less!

I have an additional challenge since I have colitis, but giving up carbs has seemed to help that. Still can’t do any green, leafy vegetables but maybe someday. I need to go make some fat bombs!!!!!

If you don’t mind, I may be picking your brain since you’re now a keto master. I’ll do it via private message, though so we don’t bore the others… are you active on any keto forums?
Sue

[SueAndHerZoo]

in reply to: Ketogenic diet and thyroid #1185212

AzGravesGuy wrote:

I’ve been Vegan Keto for almost a year now. It’s awesome!

It’s not for everyone, lol, but eating 150g of fat, 40g of protein and less than 20 carbs a day suits me just fine. My cholesterol is still circling 140. I don’t feel hungry.

I had to adjust my Synthroid up as my body fat dropped. I also discovered my body has a boomerang effect with dosage changes. It now takes me a full 12 weeks to level out after a dosage change. My TSH is lower at 8 weeks than it is at 12. Weird. Not sure if Keto related.

Thank you for that reply – it really made my day! But my first reaction was: “How in hell is he doing keto while vegan!?!?!?” My diet is so full of fatty meat I can’t imagine what I’d eat if I were still vegan!” I mean, you can’t eat grains, and you have to really limit your vegetables and fruits, so what are you eating???

That’s really interesting what you said about it now taking 12 weeks to adjust to med dose changes. I’m really stumped by the lousy way I’ve been feeling the past few days and I KNOW it’s all dose-change related, but I also know it’s been 8 weeks since my dose change and these symptoms are usually gone by now. I wonder why being keto would change our sensitivity or reaction to our thyroid meds.

I also wonder why you had to INCREASE your meds when your body fat dropped….wouldn’t you think you would need less with a weight loss? But I found that when I gave up gluten, my TSH shot WAY up so I, too, have increased. I’m going to wait till I stop feeling these symptoms and go have blood drawn to see if another adjustment is needed. I’d kill for some consistency right now so I hope I don’t find a reason why I have to give up this way of eating because right now I’m really loving it.

Thanks again!
Sue

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