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Author Topic: Does anyone here have thyroid issues?  (Read 26471 times)
catherine
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« Topic Start: October 02, 2010, 11:41:22 am »

I know that none of you know me, I'm pretty quiet here. But, I'm hoping that if anyone has experience with thyroid disorders you might be willing to talk to me about it. At the risk of giving too much information, here's the back story.

About a year ago, I had my thyroid removed due to cancer. For about 8 months leading up to the surgery my symptoms were those of hypothyroidism. I started gaining weight, didn't have any energy at all, problems concentrating, issues with my menstrual cycle, etc.

After the surgery, I had to have a radioactive iodine treatment, then I finally got on synthroid. It took a while to get the dosage right, but I understand that's pretty common. Anyway, from the time when we started testing to figure out what was wrong up until now, I've been having all kinds of issues even though all of my lab work is normal.

1) Raising energy during ritual, focus and concentration. It's like I just can't get myself together enough to do it. I don't even really know how to explain it. I feel really disconnected.

2) Huge changes in my body. I've gained about 45 pounds that don't seem to want to come off. I know I should exercise more, but again I don't really have the energy for that after the laundry is done, the house cleaned, homework, etc.

3) After the first RI treatment my hair became really dry and started falling out and breaking off so I stopped coloring it. So now, it's grown out natural and very silver. I'm trying to get used to looking about 10 years older than I used to. I know that's just vanity, but it's still bothering me. I actually had a hairdresser tell me that if she were in my position, she'd buy wigs rather than have gray hair!

4) My gynecologist thinks the whole thing has started an early-ish menopause. I'm 42, and before all of this I was regular as clockwork. Now my cycle is incredibly random. Sometimes twice in a month, other times nothing for several months. It's been really difficult to get used to. Not to mention the hot flashes. Those really suck.

5) My poor, patient husband has had to deal with my complete lack of sex drive. Probably TMI, but it's another big issue.

I've talked with my doctors, they tell me that all of my blood work is normal, so I should feel normal but I really don't. Especially when it comes to my religious practices. Since that's not really something I can talk to them about, I've been struggling with it.

I don't know. Maybe I'm not trying hard enough to get past all of this, but I really don't know how. I've never had any serious illnesses before and certainly nothing has ever affected so many different areas of my life before. It's a bit overwhelming. In addition, I'm facing another dose of RI. We'll be doing that in November. This one is diagnostic. After the RI, I'll have a scan to determine whether or not there are still thyroid cells anywhere, and if there are, I'll get a treatment dose. I'm really hoping I don't need the treatment dose. The last time, it made me feel like crap for weeks.

I guess what I want to know is, how do you get back to feeling like yourself again after something like this? Or do you? Is this a new me that I have to learn to live with? Any advice would be welcome. I really don't have anyone around who's been through this, or anything like this, to talk to about it.

Thanks in advance for any input,
Catherine
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« Reply #1: October 02, 2010, 01:12:12 pm »

I know that none of you know me, I'm pretty quiet here. But, I'm hoping that if anyone has experience with thyroid disorders you might be willing to talk to me about it.
I don't have any personal experience related to this, but a couple of things about your post stood out:

Quote
Anyway, from the time when we started testing to figure out what was wrong up until now, I've been having all kinds of issues even though all of my lab work is normal.
This bit gave me a memory-ping:  though this post itself isn't directly related to your questions (OTOH, there's enough common ground that you might find it interesting), there's a conversation in the comments about the amount of variation in "normal" for thyroid numbers.

Quote
2) Huge changes in my body. I've gained about 45 pounds that don't seem to want to come off. I know I should exercise more, but again I don't really have the energy for that after the laundry is done, the house cleaned, homework, etc.
This is not about you not exercising enough (and, what, doing the laundry and cleaning the house don't count?) - it's about changes in your metabolism (which may be a "new normal" that you have to adjust to, or may be remediable).  There's a lot of crap out there suggesting that one's weight is completely within one's control if one just Tries Hard Enough; it's really easy to fall into the trap of thinking your weight is the result of personal failings.  It's not.

Quote
I've talked with my doctors, they tell me that all of my blood work is normal, so I should feel normal but I really don't.
This bit really steams me.  You can't really feel sick!  The Magic Blood Work Numbers never lie!  You must be imagining it, or doing something wrong!  Bullshit.  It's clear from what you describe that, numbers be damned, something really isn't as it should be.  I'm not any sort of health professional, so I may be out in left field on this, but the first thing that comes to my mind is that, while your synthroid dosage may be "right" for producing the "normal" bloodwork, it may not be the right dosage for producing a healthy Catherine.  The latter, not the former, is what the goal should be here.

Some of the things you mention sound like you probably will just have to get used to them - your hair, for example; unless and until it regains enough health that you can color it again, you'll just have to live with silver.  Others are health issues that shouldn't be dismissed.  You may need to keep putting pressure on your doctor about this - I know that'll be tough, with your energy so low; will your husband's patience extend to helping you fight that battle?  Or, do you have a friend who's able to be outspoken and, if need be, fierce, who would be your advocate?

But don't just assume it's your fault for "not trying hard enough" - if overcoming ill health was just a matter of "trying hard enough", we wouldn't need doctors.

Good luck!

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« Reply #2: October 02, 2010, 02:07:15 pm »

About a year ago, I had my thyroid removed due to cancer. For about 8 months leading up to the surgery my symptoms were those of hypothyroidism.

Wait...you have no thyroid gland and you're not being treated?  WTF?

Your doc needs to tell you your numbers, not just tell you everything is okey doke. 

Brina (on the Hashimoto's express)
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« Reply #3: October 02, 2010, 02:40:28 pm »


Quote
there's a conversation in the comments about the amount of variation in "normal" for thyroid numbers.

Thanks for pointing me toward this. A lot of the comments were very similar to what I've been dealing with. I actually did talk to my endo. about my levels being in the normal range, but not necessarily normal for me. All she had to say about it was, that she had me slightly above normal right now due to the cancer. That usually she'd want me a little lower! I told her if I was any lower, I wouldn't be able to get up in the morning! She advised me to get my hormone levels checked by my gynecologist. My gyne. doesn't want to do any hormone testing until I'm all finished with the RI treatments. It's very frustrating.

Quote
This is not about you not exercising enough (and, what, doing the laundry and cleaning the house don't count?) - it's about changes in your metabolism (which may be a "new normal" that you have to adjust to, or may be remediable).  There's a lot of crap out there suggesting that one's weight is completely within one's control if one just Tries Hard Enough; it's really easy to fall into the trap of thinking your weight is the result of personal failings.  It's not.

Thanks for that. I've never been a skinny girl and was always okay with it. But this kind of weight gain is pretty extreme for me. It's easy to forget that it may not be entirely within my control.

Quote
This bit really steams me.  You can't really feel sick!  The Magic Blood Work Numbers never lie!  You must be imagining it, or doing something wrong!  Bullshit.

Yeah, this is pretty much where I am right now. I know there's something going on, I know I'll find out what it is. What I don't know is how many more hoops I'll have to jump through before I do.

Quote
Some of the things you mention sound like you probably will just have to get used to them

No doubt. I guess I'm struggling with it so much because it's all happened so fast.

Quote
You may need to keep putting pressure on your doctor about this - I know that'll be tough, with your energy so low; will your husband's patience extend to helping you fight that battle?  Or, do you have a friend who's able to be outspoken and, if need be, fierce, who would be your advocate?

I plan on talking to my endo about it again at my next appointment. I have more blood work to do in two weeks, and I'll be seeing her again soon after. Honestly, I'm almost ready to find another endo. I like this one well enough, but I'm getting frustrated with her assertions that everything is "normal". My husband, he's very supportive all the way around. He's actually gone with me to every appointment, he's great about helping me prepare for my appointments by going through my questions, symptoms, etc. with me so that I don't leave anything out, and he's not afraid to ask questions himself. But, he's not nearly as assertive as I am about these kinds of things. The only real advocate I have is myself.

Quote
But don't just assume it's your fault for "not trying hard enough" - if overcoming ill health was just a matter of "trying hard enough", we wouldn't need doctors.

True. At this point, I kind of feel like I'm caught between doctors. My endo seems to think it's related to menopause, and my gyne. says she can't say for sure until I'm finished with cancer scans and treatments. It's starting to feel like an endless circle.

Thank you so much for your input.
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« Reply #4: October 02, 2010, 02:46:20 pm »

Wait...you have no thyroid gland and you're not being treated?  WTF?

Your doc needs to tell you your numbers, not just tell you everything is okey doke. 

Brina (on the Hashimoto's express)

My thyroid gland is gone, the whole thing. I'm on synthroid, 112 micrograms. Also mega doses of calcium and vit.D and I still don't feel like myself. But you're right, I need to find out what those numbers actually are and what that really means.
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« Reply #5: October 02, 2010, 02:47:15 pm »


About a year ago, I had my thyroid removed due to cancer. For about 8 months leading up to the surgery my symptoms were those of hypothyroidism. I started gaining weight, didn't have any energy at all, problems concentrating, issues with my menstrual cycle, etc.

I had my thyroids removed in 1992 due to cancer.  The weight gain, low energy and concentrating are issues I have had to deal with.

 First, see an endocrinologist.  I am not a medical or any kind doctor. From experience I would say you are not on the right amount of Synthroid.  

Yes it takes a lot of arguing with the doctors, but remember that you know better than the doctors if your body is right.

You have the control and finial say in your medical care, not the doctors. (I had to tell one of my doctors to give me a higher dosage of Synthroid than he wanted to, I needed the higher dose).

Second, do your blood sugar levels return to an acceptable level in an acceptable amount of time after eating?  I have found that uncontrolled sugar affects a lot of things.

Quote

After the surgery, I had to have a radioactive iodine treatment, then I finally got on synthroid. It took a while to get the dosage right, but I understand that's pretty common. Anyway, from the time when we started testing to figure out what was wrong up until now, I've been having all kinds of issues even though all of my lab work is normal.


It does not sound like you are on the right amount of Synthroid.   Normal is relative.  My body temperature is normally 97.2, not 98.6 (I have been taking it almost everyday for 20 years).  Those of my doctors who take my temperature accept this.  When I go to the hospital or see a new doctor, they don't believe it.  In the hospital the registered nurses will usually write that on my chart, and say thank for letting them know.  

Quote
1) Raising energy during ritual, focus and concentration. It's like I just can't get myself together enough to do it. I don't even really know how to explain it. I feel really disconnected.

  Cheesy I usually say my get up and go, got up and went.

Quote
After the first RI treatment my hair became really dry and started falling out and breaking off so I stopped coloring it. So now, it's grown out natural and very silver. I'm trying to get used to looking about 10 years older than I used to. I know that's just vanity, but it's still bothering me. I actually had a hairdresser tell me that if she were in my position, she'd buy wigs rather than have gray hair!

I only had Radioactive Iodine once.

Quote
I don't know. Maybe I'm not trying hard enough to get past all of this.


BULL do not buy into that.  It's a lot easier to blame you than to find out what is happening and why.
If you health insurance (if you have it), or you can afford it see the doctors on the leading edge of medicine.

Quote

I guess what I want to know is, how do you get back to feeling like yourself again after something like this? Or do you? Is this a new me that I have to learn to live with? Any advice would be welcome. I really don't have anyone around who's been through this, or anything like this, to talk to about it.

Catherine

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« Reply #6: October 02, 2010, 03:14:31 pm »


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I had my thyroids removed in 1992 due to cancer.  The weight gain, low energy and concentrating are issues I have had to deal with.

How long did this go on for you?

Quote
You have the control and finial say in your medical care, not the doctors. (I had to tell one of my doctors to give me a higher dosage of Synthroid than he wanted to, I needed the higher dose).


How did you go about getting your doctor to increase your dose?

Quote
I only had Radioactive Iodine once.

I'm hoping this will be last time for me. But, it all depends on what the scans show. I think the low iodine diet is the worst part of that.

Quote
First, see an endocrinologist.  I am not a medical or any kind doctor. From experience I would say you are not on the right amount of Synthroid.

I am seeing an endocrinologist. Sorry, I guess I wasn't clear about that in my initial post. I thought the same thing about the synthroid. However, she thinks everything is fine and doesn't want to increase my dose.
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« Reply #7: October 02, 2010, 03:41:44 pm »

Brina (on the Hashimoto's express)

How do you deal with the symptoms? Or are yours under control? Also, I wonder if it's harder or easier to regulate while you still have a thyroid? Do you still have your thyroid gland?

Sorry about all of the questions everyone, but the only people I know who have/had a thyroid disorder were my grandmother and she's been dead for 6 years, and my uncle who I'm not very close with and don't particularly like. I'm not generally the sort to ask for help, so I really appreciate everyone taking the time to talk about this with me.
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« Reply #8: October 02, 2010, 04:07:10 pm »

My thyroid gland is gone, the whole thing. I'm on synthroid, 112 micrograms. Also mega doses of calcium and vit.D and I still don't feel like myself. But you're right, I need to find out what those numbers actually are and what that really means.

Couple of things:

Are you aware that calcium can interfere with thyroid uptake?  You shouldn't be taking your calcium and thyroid meds at the same time.  I take my calcium/magnesium/D supplement at bedtime, and thyroid in the morning.

Do you know anything about T3 (a.k.a. Liothyronine Sodium, common brand-name Cytomel)?  It's a bio-ready form of thyroid hormone (doesn't need to be first converted by the body like T4 does).  A lot of people take both, usually T3 in the morning, and split dose of longer-acting T4 morning and afternoon/evening.  T3 can be especially beneficial if your T4 conversion isn't what it should be.

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« Reply #9: October 02, 2010, 04:28:44 pm »

Couple of things:

Are you aware that calcium can interfere with thyroid uptake?  You shouldn't be taking your calcium and thyroid meds at the same time.  I take my calcium/magnesium/D supplement at bedtime, and thyroid in the morning.

Do you know anything about T3 (a.k.a. Liothyronine Sodium, common brand-name Cytomel)?  It's a bio-ready form of thyroid hormone (doesn't need to be first converted by the body like T4 does).  A lot of people take both, usually T3 in the morning, and split dose of longer-acting T4 morning and afternoon/evening.  T3 can be especially beneficial if your T4 conversion isn't what it should be.



Yes, I do the same thing with my calcium and vitamin D. I take my synthroid in the morning and the suppliments in the evening. Synthroid on an empty stomach, and nothing to eat or drink for at least an hour.

I was on cytomel between my surgeries and the first RI treatment, then she switched me to synthroid (is synthroid a T4?). I wasn't aware that some people took them both. I will look into that. Thanks.
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« Reply #10: October 02, 2010, 04:32:49 pm »

After the surgery, I had to have a radioactive iodine treatment, then I finally got on synthroid. It took a while to get the dosage right, but I understand that's pretty common. Anyway, from the time when we started testing to figure out what was wrong up until now, I've been having all kinds of issues even though all of my lab work is normal.

Lyric STILL has lack of energy issues 2+ years after 6 weeks of radiation treatments for oral cancer. While these were probably more debilitating that Radioactive Iodine, ANY type of radiation treatment apparently cause long term lack of energy. I can't say anything about other issues, but this one, unfortunately, seems to be extremely common.
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« Reply #11: October 02, 2010, 08:01:58 pm »

I know that none of you know me, I'm pretty quiet here. But, I'm hoping that if anyone has experience with thyroid disorders you might be willing to talk to me about it.

Hi there! Diagnosed with hypothyroid and low vitamin D last winter. Also a priestess and group leader trying to figure out how the energy stuff works for me now.

Started feeling unexpectedly exhausted last summer. Had an *immensely* stressful new job, where I was also working 60 hour weeks, so spent most of the fall going "Of course I'm tired, I'm working all the time, I'm constantly running around trying ot get stuff done."

And then I got H1N1 in early November, felt lousy. Thanksgiving, I had five days off, felt as lousy on Monday morning as I had Tuesday night, and went in and said "There's something seriously wrong." and started beating on my medical care to figure out what it was. My GP, who I normally love, wouldn't treat the thyroid, but I had tons of symptoms that made me go "Erm." (Being constantly cold, which is very abnormal for me, skin + hair changes as well as the exhaustion, and a complete loss of ability to do executive function skills, plus some other less-dire things.)

Saw the nice endocrinologist in January, he diagnosed low Vitamin D and was willing to try treating the hypothyroid, both turned out to be the smart move, and as of July, my numbers for both are within normal range.

I'm going to go into that here for a minute, in case it's helpful to either you or anyone else.

There's a whole bunch of different things that can go wonky with thyroids: for some people, it's actually the thyroid - but for other people, it's sometimes something else in the endocrine system going wonky that then pushes the thyroid wonky. If you're still not feeling good, it might be worth working your way through all your test results, and seeing if there's anything worth testing. (And yes: make them give you the actual numbers, not just "Oh, it's fine." It's your body, you have the right to know the details.)

LabTestsOnline has a great set of pages (from medical professionals) about a whole range of tests, and what they do and don't tell you. (http://www.labtestsonline.org/understanding/analytes/tsh/test.html is the TSH test)

TSH is the most basic test for thyroid stuff: it stands for Thyroid Stimulating Hormone. The normal range is .. well, complicated. It used to be .5 to 5 for most labs: about 10 years ago, there was a push by the relevant medical associations to push that lower (.5 to 3). I was, when we tested me, right on that borderline (3, 3.1) - but it was substantially over past tests in my history when I knew I was feeling good and had lots of energy. (And 3 is right around the range that it was at times in my life when I was under a lot of stress, but also feeling absurdly exhausted for no apparent reason.) Our current conclusion is that I just really am that sensitive, especially when I'd been burning reserves of everything else to keep going through a stressful series of years in a number of ways.

Basically, if you have lots of TSH in your body, you have lots of stimulating hormone - but you're not actually producing enough thyroid hormone itself for your body to use. If you have a very very low TSH (like below .2), you're using up your thyroid hormone faster than you can make it. Being hypothyroid (slow thyroid) feels lousy, but being hyperthyroid (over active gland) is actually more risky, because it can come with heart and other risks if it goes untreated.

There are times this makes a difference: my endocrinologist (young, did his residency at the Mayo Clinic a couple of years ago, well up on the most recent standards) was willing to try treating it - my GP wasn't.

For thyroid cancer, I understand that the standard recommendation is to keep the TSH levels *very* low, because it prevents other potential problems. However, it can't be *too* low, because you do still need some in your body so other chemical processes can work. I seem to remember seeing the recommend range is somewhere between .1 and .2 - but how much sythroid that takes depends on the person. Synthroid adds thyroid hormone to your body, so your own thyroid gland doesn't need to work so hard to produce it - or, for people who've had it removed, because they can't produce it themselves.

(And again, note that the numbers go the other direction from what you might expect: high TSH means inadequate thyroid hormone. Low numbers (within reason) mean you're doing well. The normal range for people without thyroid cancer is usually right around 1.0)

That said, it's not the only hormone in play. Some people don't convert the synthroid well into the other variants that the body needs (T3 and T4). There are lab tests you can do to test all of these. The thyroid pages at the About.com site (http://thyroid.about.com/) have a lot of useful information: there's some stuff there that's more 'out there' than others, but a lot of stuff that's worth thinking about, and asking about, and bringing to an endocrinologist. Basically, there are other medications that help with the conversion from one hormone to another, and some people do better on what's called natural thyroid hormone (Armour is one brand, there are others). However, it can be hard to find a doctor who is comfortable prescribing it.

The About site has a page of links to doctors who specialise in thyroid issues. You might also find http://www.thyca.org/ of use - they're linked to as a resource for thyroid cancer survivors.

Onto the other parts of your question (I'm going to take part 1 last, 'cause the others are fairly fast answers)

Quote
2) Huge changes in my body. I've gained about 45 pounds that don't seem to want to come off. I know I should exercise more, but again I don't really have the energy for that after the laundry is done, the house cleaned, homework, etc.

Thyroid has a huge impact on metabolism - and, as far as I can tell, a complicated one. (It's not as simple as 'treat the hypo, lose weight.) I've weighed somewhere between 200 and 250 pounds for my whole adult life: it's possible the last 15 of that over the last few years were the thyroid more than other responses.

Mostly, I don't care. I've long believed in the theory of Health at Every Size - the idea that you can treat your body well, regardless of the number on the scale, and that weight is more complex than we really understand. (Eat less calories than you consume is a lovely theory - but in people who don't have a standard working-issue metabolism, figuring out that number is complicated.)

For me, my food habits have changed a whole lot: I was eating very reasonable meals before all of this happened (and often, less food than two friends who've had gastric bypass surgery do). However, the last six months, I need:
- To make sure there's a pretty high level of protein in my diet. I see a very real drop in mental function when I don't.

- I've been playing with the proportion of carbs in my diet: I am not seeing major changes there, but I am trying to cut back, and to eat as much lower-processed food as I can.

- In tracking my diet, I'm actually finding that I'm eating *way* less than is probably good for me: if I don't pay attention to it, I'm likely to be down around 1000 calories a day, and at that level, my brain starts not working right. I have to actively plan meals and when I'm eating (and have easy-to-make higher nutrition options on hand - cheese is a great one for me, for example) for when I forget, because otherwise I'll just forget, and it'll be 8 or 10 hours since I last ate.

- Eating stuff that helps with either nutrition or digestion helps: bone broth made from simmering the chicken carcass with lots of veggies. Nettle infusion. Stuff with mushrooms (which have a lot of restorative properties to the body). Lots of healthy veggies. Fermented foods with happy probiotics (yogurt, kefir, things like kombucha, etc.)

- There are bunch of foods that complicate thyroid stuff or affect medication levels. Soy is a huge one. (Fermented soy - miso, tofu - in small amounts is okay for a lot of people, but lots of it - fake meat products, say - is not so good.) Most of the brassicas are a problem for some people raw (cabbage, broccoli, cauliflower, brussel sprouts, kale, etc.) but not a problem cooked. I don't worry about having these foods once in a while (eating at someone else's home, say), but I only eat cooked brassicas at home, and I don't have soy products at home, period.

- Swimming was a very very accessible exercise for me at my worst, because I could stop at the end of the pool whenever I needed to, could go fast or slow depending on my energy, etc. Walking is a lot trickier for me because I need to make sure I can get home safely if I feel overwhelmingly tired while I'm out. A stationary bike/treadmill might help if you want to do stuff at home.

- Exercising in the morning was also much easier for me than in the evening (even though it meant getting up at 5am so I could swim for 30-40 minutes before work, have a chance to dry off, and be at work by 7.) The days I did, I had a lot more energy, even though it was clearly more exertion. (I have, for reasons relating to the annoying menstrual cycle side effects, not been swimming much the last few months, and I miss it.)

I don't expect any of this to particularly change my weight (nice if it does, not expecting it to.) I'm aiming for better energy, for my body being able to use that energy to heal and renew, and so on.

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3) After the first RI treatment my hair became really dry and started falling out and breaking off so I stopped coloring it. So now, it's grown out natural and very silver. I'm trying to get used to looking about 10 years older than I used to.

Early silvering is a really classic sign of autoimmune diseases (which includes a number of causes of thyroid stuff.) I'm 35, and my hair is brown, but there are swaths of much more salt-and-pepper in there. That siad, I took an initiation name meaning "Silver" about 8 years ago, and so I feel I can't really argue with it. I mostly look forward to being one of those sort of timeless women with gorgeous silver long hair up in a bun. (I have thought about dyeing it, but it looks fine, really, and I don't want to add either upkeep for henna or dye chemicals to my life.)

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4) My gynecologist thinks the whole thing has started an early-ish menopause. I'm 42, and before all of this I was regular as clockwork. Now my cycle is incredibly random. Sometimes twice in a month, other times nothing for several months. It's been really difficult to get used to. Not to mention the hot flashes. Those really suck.

IT might or might not be - this is definitely something to discuss with your endocrinologist. Thyroid and estrogen and progesterone levels are linked in the body, so changes in one changes the others. And it can take quite a few months to work out a new balance.

I've never been regular, and that's even more so, now, but it's the side effect that, while annoying, I'm least worried about, because I've been through my body trying to sort this kind of shift out a couple of times. Tracking might help a lot. (Also, because the obvious solution for this is birth control pills, and I'm not really that eager for another round of those.)

If you're not already tracking basal temperature (temperature first thing in the morning, before you even sit up in bed), that might be helpful in narrowing down some cycle information: a number of hypo folks track it routinely because a low body temperature is linked to a low metabolism, is linked to low thyroid, and so the core basal body temperature going up can be a sign you're getting into the right medication range. For women, there's also a pattern of temperature shifts around ovulation that can tell you if you are, and if so, when. Problem is, you usually need to track for a couple of cycles to be sure of the patterns.

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5) My poor, patient husband has had to deal with my complete lack of sex drive. Probably TMI, but it's another big issue.

I do not have sage advice on this one, as I'm single. It might be worth looking at why you're not interested - the solutions for "I am totally exhausted by everything else" are different from "All the sensations have changed and various things hurt/scratch/get raw in ways they didn't used to"  are different from "I just don't want to." (And that second one is very likely given the interaction of estrogen in particular with other parts of the endocrine system.)

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1) Raising energy during ritual, focus and concentration. It's like I just can't get myself together enough to do it. I don't even really know how to explain it. I feel really disconnected.


When I started recovering, I sat down with two of my favorite community elders to talk about some of this. (I'm a 3rd degree in my tradition: they were the HP who trained me and his husband, with lots of experience in a different tradition, and I wanted to pick their brains.)

They both said:
- The medical stuff is not you: it does not need to take over your life and it should not be all you ever focus on or talk about. (My HP: "I don't think that'll be a problem with you somehow." Me: "Nope, too many other things are too interesting.")

- Find people who do a good job of dealing with chronic stuff, and talk to them when needed. Especially people doing similar things.

- Balancing commitments. Don't take on too much, and look for ways to contribute that work for you.

- Making absolutely sure to block time off for keeping moving and active.

- They both know people who've had substantial changes in managing energy after being diagnosed with thyroid issues (especially hypo, but also hyper, from what they said). It's not a "You can't", but it is a "Be extra super careful about it - when you're raising energy, take extra time to plan really well, so you use as much energy as you need to, but no more." Don't try out stuff randomly, don't go along with it just because everyone else thinks it's cool, don't push yourself just for the sake of education unless you've got plenty of recovery time.

The last one has been very true for me: some methods are still okay for me, some methods are tricky right now (and my group is on hiatus partly because I'm job hunting, and might end up moving, but also because I'm still trying to figure out how to navigate this one well in a group setting with students.) I've generally found that chanting, music, and breathwork are working fine: I would not pick dancing or any other moving meditation form for ritual work right now, and I've found that my 'sustained focus and attention' level varies a lot. Some days, I've got hours in me, some days I've got 20 minutes.

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Is this a new me that I have to learn to live with? Any advice would be welcome. I really don't have anyone around who's been through this, or anything like this, to talk to about it.

To some extent, yeah. That's the annoying thing about chronic illness: it turns all your assumptions upside down. That said, it doesn't mean everything goes away. It just means you may have to be a bit more deliberate in what you do and how you do it. It may mean you give up control of some stuff to focus on others. It may mean adapting how you deal with housework (during my worst, I had a cleaning service come in twice a month, because I could keep up with the dishes and the laundry, but sweeping, dusting, and a bunch of scrubbing-type chores where I had to move around (bathtub, for example) were miserable. And I have a 400 square foot space.)

Other advice, for what it's worth
Recovery takes time: I lost my job at the end of June, which has in a lot of ways been really good for me. There's obviously a lot of stress in not having one, and needing to figure out what to do about that (see also: single: don't have another income outside of unemployment.)

At the same time, a couple of months where *all* I'm doing is applying for jobs, and where I can nap when I need to, and sleep late if I had a long day the day before, and where I can move around what I do that day based on when I feel I have my best focus, has been really helpful - and it's helped me finally get those executive function and cognitive skills back. (I'm not at my old levels, but I'm enough back I can see me doing my job - librarian - again without misery. Which is good. I am not fond of misery. )

On the Vitamin D - you mention megadoses, but have you had your blood tested? Normal range is 30-80 of whatever the measure is: I was down at 12 when we initially tested me, and twice a week megadoses of 50,000 IU of Vitamin D got me back up to the low 30s. (This is the prescription version: if you buy it OTC, you might find a 2000 or 3000 per pill. So, compare, say, 21000 a week to 100,000 a week.) Turns out I just don't store it very well, at least right now.

There's some new research suggesting that thyroid patients might want to try and aim at the upper level of the 'normal' range: Vitamin D has a lot of impact on all sorts of endocrine health. We tried upping my dose (after 3 months on a once-a-week 50,000 between April and June) and I do feel like something kicked in.

There's also some research out there that suggests that selenium helps with thyroid issues, and that a B complex vitamin might not be a bad addition, either.

You might also consider seeing an alternative health practitioner: I see an herbalist regularly, and I know that good acupuncturists can make a lot of difference with thyroid stuff. It's not  necessarily treating the thyroid issues directly, but helping your body make the absolute best of the energy, nutrition, etc. you do have, so you can function better.

One last thing, since it's a weird med thing: thyroid medication takes a while to work its way into your system: most people see medication changes kick in 6-8 weeks after starting the new dose. (For me, both times, it's been a really major thing: one day I was dragging, the next day I went "Wheee! I can do stuff!" - first starting treatment at all, and then upping my dose slightly, when I was about 65%-70% back to normal, but clearly not all the way there.) You might know that, but I keep surprising people with that fact, so I like to get it out there.

Anyway: Do I feel I can go back to having an active life once I get a chance to recover a bit more, and hold down a job that wants reasonable hours out of me, but that uses my skills and talents? Absolutely. Am I there yet? Not quite, but I'm a lot further than I was in July, August, or even the beginning of September. There's certain stuff I need to be careful with (trips out with lots of people where I'm doing lots of background processing about avoiding traffic, navigating a crowd, etc. turn out to still be very tiring for me). But sitting down in a space I know well and doing stuff is a lot easier.

Lots of rambling, but I hope some part of it is helpful: feel free to ask questions.
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« Reply #12: October 02, 2010, 08:43:30 pm »

How long did this go on for you?
I went up to over 300lb.  My last stay in the hospital (Jan-Feb this year) I came out at 290lb.  currently I am 285 lb which I consider a victory.

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How did you go about getting your doctor to increase your dose?


I kept a log of what the medication was and was not doing to me.  I asked him why he did not want to give me a higher dose.  Showed him my log and how I did not have the get up and go to do things.   
 
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I am seeing an endocrinologist. Sorry, I guess I wasn't clear about that in my initial post. I thought the same thing about the synthroid. However, she thinks everything is fine and doesn't want to increase my dose. 


If everything was fine you would not be having problems.   Ask her what effects could be produced by your taking a higher dose?
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« Reply #13: October 03, 2010, 12:15:52 am »


I kept a log of what the medication was and was not doing to me.  I asked him why he did not want to give me a higher dose.  Showed him my log and how I did not have the get up and go to do things.   
 

I forgot you should ask your doctor, if what is considered, normal takes into account your problems (list them out for her)?  Example: my normal time to walk a mile is 20 minutes. If it is very windy it takes a little bit longer, add some rain it will take even longer.  Snow, ice even longer.  it is the same with medical conditions they compound each other.
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« Reply #14: October 03, 2010, 12:31:26 am »

For thyroid cancer, I understand that the standard recommendation is to keep the TSH levels *very* low, because it prevents other potential problems. However, it can't be *too* low, because you do still need some in your body so other chemical processes can work. I seem to remember seeing the recommend range is somewhere between .1 and .2 - but how much sythroid that takes depends on the person. Synthroid adds thyroid hormone to your body, so your own thyroid gland doesn't need to work so hard to produce it - or, for people who've had it removed, because they can't produce it themselves.

The accepted protocol after thyroid cancer is 100% TSH suppression, which means TSH should be as close to zero as possible.  The reason for this is that TSH doesn't just stimulate the thyroid to produce hormone, it can also cause thyroid tissue to regrow (the endocrine system is a wonder like that).  This is why near-suppression is sometimes (and should be more often, IMO) recommended for those of use with autoimmune thyroid disease too.  The growth of new tissue can trigger an autoimmune response.

Brina
« Last Edit: October 03, 2010, 12:42:35 am by yewberry, Reason: Spelling error » Logged

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