Tsh low -- what does it mean?

[Andrea Barnett Budin]

FOUND!

from Nov 2012
TSH .80 (range .40-4.oo)
FREE T4 1.07 (range .89-1.76)
FREE T3 2.54 (range 1.80-4.20)
Anti-TPO ab ABNORMAL 52.2 High (range 10.0-35.0)
Anti-TG Ab ABNORMAL LOW (range 20.0-40.0)

How did I never check the last two?

I see her note THYROID LEVELS BETTER! NORMAL.

And I guess I moved on...

I flinch at ABNORMAL -- HIGH or LOW always.
Well, I guess, when I'm not in a rush...

So -- 1 yr later -- I am flinching. And asking -- tell me everything you know about Anti -TPO and Anti -TG
please...

[rhondalea]

I think my list is at least as big as yours, Andi. I take nearly 50 different supplements every day. Nearly all of them are lower doses, though--I've gotten cautious about taking the amounts in commercial capsules.

A couple of things on your list rang some bells with me, so I'm going to look up everything just to be sure. Just so you know, ALCAR has been used to treat hyperthyroidism. I also take it, but I've got my thyroid meds adjusted to take that into account. (It may, however, explain part of the problem I was having with my labs for a time.)

For right now, having nothing to do with your thyroid numbers and everything to do with cancer, have you considered taking niacin or niacinamide instead of NADH? I read the following paper, and I gave up the NADH immediately. I've been taking extra niacin/niacinamide ever since.

The article:

http://www.scripps.edu/newsandviews/...5/felding.html

The paper:

http://www.jci.org/articles/view/64264

I'll get back to you shortly on everything else. I think it would be a really bad idea for you to change your regimen given how well it has worked for you, but a little fine tuning might be useful, especially for the supplements that you're using for energy and brain fog.

[rhondalea]

You have Hashimoto's (the Anti-TPO result--yes, it could be Graves, but neither your labs nor the other antibody test you reported in an earlier post support that conclusion). Anti-TPO antibodies explain your other thyroid labs, bang, zoom, end of story. They also explain the nodules, although you still need to keep a close eye on them and think really hard about having the biopsy--better safe than sorry. I'll still go through the supplements, but they're not the reason you're having an issue.

I don't understand the result for Anti-TG Ab. Low is good. None is best. Are you sure it doesn't just say that your thyroglobulin (TG) is low? Either that, or there's a typo on the report, because thyroglobulin antibodies are not to be desired in any amount. Low thyroglobulin would fit with the anti-TPO AB too.

Be aware that endocrinology group-think is to not treat Hashimoto's, per se, but to treat the ultimate result--hypothyroidism. Low dose naltrexone has shown promise for suppressing antibodies and making Hashi's folks feel better, but the research isn't there yet--it's mostly all anecdote. Even at that, it might be worth talking about.

I need to go back and reread the whole thread now, because I think you mentioned symptoms that are almost always attributable to antibodies wreaking havoc on your system.

I would strongly suggest to you (as I suggested to NEDenise for her brain fog and other symptoms) that you give lecithin a shot. 15-30 grams a day in split doses should give you more energy and lessen your brain fog. I haven't quite figured out the connection between the cholingeric receptors and thyroid disease, but I know there is one, and more than that, I know lecithin is innocuous and it works. You don't need to worry about it being derived from soy--lecithin is so highly refined that it's irrelevant. Other than that, though, you should avoid both soy and iodine. You may also want to consider deep-sixing gingko, but we can talk more about that later.

This is like my daughter all over again. I said to her, "It's your thyroid." She finally got tested, and she said, "All my labs were normal." And I said, "Even the antibodies?" Blank look. "Uh, I forgot." (Because people with thyroid issues forget the most important things all the time.)

When she went back and had the antibodies done, they were raging. Internist gave her a referral to my endo. He did a full workup, and he put her on Tirosint (levothyroxine of the finest variety--I wouldn't taken anything else). He also considered giving her a beta blocker, because she was having what she thought were panic attacks--I knew they weren't because I'd had them too--but with the Tirosint working, she didn't need it. Thyroid had done a bunch of other things--her D was low, as was her B12, so she had to supplement, but as soon as her thyroid was under control, everything else fell into place.

You should look back as far as you can to see when the antibodies were first detected. This may have been going on for a long time.

['lizbeth]

I guess I will need to limit my brazil nut habit to 2 or less per day. Rats. I love them.

I take the lecithin for memory. I also use it to lower my heart rate.

[rhondalea]

I know, 'lizbeth. I like brazil nuts, too, but I'll never eat another one.

That's the trouble with so-called "natural" cures--the general feeling is that if it's natural, it won't hurt you, but I've known people who have severely damaged (and even killed) themselves with that thinking. Some of the supplements we take have the potential to do untold harm. (I have a basket full of supplements that I thought were a real good idea, only to learn upon further research of their potential for disaster for those taking tamoxifen.)

['lizbeth]

Rhondalea,

After having cancer and dealing with the medical community I've learned to be skeptical of everything. If anything I had such a blind faith in doctors, but I've gotten hard lessons that there are great doctors and not so good ones. Sometime modern medicine treatments are miraculous, and there are times they should be avoided.

My mom was really into natural medicine. But I didn't personally want to gamble on a natural cure with no research behind it. I tried some of the stuff that had studies behind them, but they didn't slow down the Pagets -yikes.

Worse yet, I think you mentioned Brazil nuts before. But I like them so much I must have not incorporated that information into my little noggin'.

I was looking at AndiBB's list and there is no way I could take what she takes. I'd have serious side effects with the Arginine and the L-Tyrosine.

My next thought is what is a more natural way to deal with the antibody issues? And again I wonder why the iodine levels were not tested. I have read about increased halides and the increase of Hashimoto's and Graves. Were any halide levels tested? It just seems to me that mainstream medicine just monitors a few things (like you said they even omit the antibodies) and just allows the thyroid to deteriorate.

I'm wondering if I should find my own ND and get some things tested.

I was also just reading in Kharrazian's brain book about the connection with blood sugar and acetylcholine. Interesting reading. Have you read his book on the thyroid?

[rhondalea]

Re Andi's list of supplements, you should see mine.

https://www.dropbox.com/s/1zn44zelam...6%20Daily.docx

I'm totally with you on your comment about doctors, and I think skepticism about all things is a very handy tool. Now that I don't work (and now that I have my brain back), I have plenty of time to research, so that's what I do. With luck, I may survive both my chosen medical professionals and my own self-medicating.

Kharrazian's method of dealing with antibody issues is to cut out gluten. Bang, zoom, you're fixed. That turned me off, because I'm neither celiac nor gluten-intolerant. I don't have the genes for either, and I don't react to the absence of gluten (except by going mad for the lack of bread--you will pry my French roll out of my cold, dead hands). I will have to look at his brain book for information about acetylcholine and blood sugar, though. Unfortunately, the damage done to my cholingeric receptors by benzyl alcohol was severe enough that I've needed the big guns (Aricept) to fix me. Lecithin helps, but it never would have been enough on its own.

I think the first step for anyone who wants to deal with all their health issues is genotyping. Admittedly, we're not there yet--it's all cutting edge stuff--but it offers a head start in understanding one's triggers and body failures. Of course, it'll be even easier once we reach the $1000 genome (or if the Personal Genome Project gets funding to start testing again), but for now, 1M snps (from 23andMe) is nothing to sneeze at.

Now I really need to get through Andi's list. Some things really niggled at me, but I want to look them up (at Natural Standard) to be sure I've got it right. The problem is that what she's taking has worked really well for her--she's cancer-free, against all predictions, so changing things is probably not a good idea even if it is making her antibodies rage a bit more than they would otherwise. In a choice between raging antibodies and cancer, the choice is not in doubt.

[Andrea Barnett Budin]

Oh, Rhonda. You are so my kind of person. Yes, surviving our chosen medical professionals and our self-medicating (though cheered on by my nut onc).

Totally with you on the gluten thing. It doesn't feel like a fit for me. Bread and pasta are essential to my life. I don't overdo, but I too am not going there. (Did do carb free for a yr -- Atkins, lost a tiny bit of weight, cooked more than I ever wanted to and just had to stop the insanity.)

'Lizbeth, I too am wondering why my iodine levels weren't checked. And a lot more. New endo guy (recommended by cardiologist, says he's brilliant and loves to talk -- sounds like a match to me!) is supposedly very thorough. He won't jump to do surgery, my cardio guy says.

I would never have taken Arginine or Tyrosine in yrs past. But when I ordered my Perfusia, which nut onc had recommended, the apothecary said they don't make it anymore and what it actually was was Arginine, so nut onc is now recommending that. And my EF is up to 65% vs 50%. Plus I feel great. Heart healthy. EKG, ECHO for small peri-cardial effusion (a forever gift from Taxotere), BP spot on. Even my pulse has lowered, which for me is a good thing.

And Tyrosine was a small part of a supplement holistic lady gave me for stomach, which I stopped cause it wasn't helping my IBS, but I searched the ingredients cause even when I didn't sleep well, I felt as if I had the next day. I traced it back to the Tyrosine and sure enough, it is a great pick me up to start the day and has something in it that ignores your lack of sleep. My dghtr, w/2 young kids, is always exhausted so I recommended this to her, and she loves it. It helps.

WHAT IS ACETYLCHOLINE? I will google. Or goggle as I prefer to say/type...

I too have a shopping bag full of rejected supplements that my body or my reading dissuaded me from taking. I may consider them some time in the future. Some I just outright throw in the garbage. I don't let myself get caught up in $$$ wasted as I used to. If it isn't good for your body, pass it on to another who likes it and gets along with it, or toss it, guilt-free. YOU DESERVE THAT.

My nut onc's suggestions are longer than my list. I cut some out. I don't need it all. But I do need all I am taking. And it is a job. A serious chore, swallowing all that twice a day.

I too took nut onc's advice re halving dosage rather than taking all at once. Simpler but not better.

I buy only CAPSULES. Tablets just don't go down as easily, or at all for that matter.

I do consequently consume about 10 glasses of water a day, which is good. I am well hydrated, flushing out the toxins...

I use NADA (Enada) for memory, focus, concentration. (My Mom had Alzheimers from mid 70s...) And it gives me energy.

Tried a supplement with a modicum of niacin (which I'd always avoided due to my 27 yrs of constant flushing/hot flashing -- which is like your trapped in your own skin, ON FIRE and can't breathe). That supplement was for my belly issues and I WAS DRIPPING FROM THE TOP OF MY HEAD TO MY WAIST, HAD THE WORST HEADACHE IN THE WORLD (and I never get headaches!!!), FELT LIKE I WAS GOING TO PASS OUT, HAD TO LAY DOWN/COLLAPSE MIDDAY ON BED.

I returned that supplement and now have added to my meds/supplements list for docs a warning that I cannot tolerate anything with niacin in it.

More to respond to, but I'll stop for now.

Am going to see a 4th dog. 1 yr old 5 lb maltese who has lived in a bathroom all its life and has no name. Others are willing to adopt it, but I am just going to give him a hug and some loving. I seem to have to. We don't want a 4th dog. I am not on crack. But, I am conflicted...

So, later, my friends...

[Andrea Barnett Budin]

Rhonda,

Please share YOUR supplement list with me/us.

I am so excited to meet another person who has a list of many dozens of supplements! I've been searching for you for decades! Please, please -- share...

What are you into?

Love,
ANDI

[Aussie Girl]

Hi Andi,
I've been offline a few days with my own chemo.

It is really hard to keep good nutrition when you have IBS and then add diabetes and hypertension. Much easier than if you can eat a wide variety of wholesome food and do without supplements, but with your diet limitations make that impossible.

I definitely wouldn't give up gluten if there wasn't a sound reason to - I hate having to eat gluten and lactose free, but for me, it's better to do that than spend all night on the toilet.

You sound like you've been doing a good job on your nutrition for years, under difficult circumstances.

It's not that long until you see the new endocrinologist, so you can ask him about the iodine levels etc. I'd really like to see a further thyroid panel of blood tests a few months after the low TSH lot, to confirm there is a continuing problem.

Cheers
Aussie Girl

[Andrea Barnett Budin]

Thanks, Aussie Girl.

I have checked way back to when my fav endocrin doc/lady was with me. I see 2007 -- low TSH and notes of hers HYPERTHYROID.

I once told me no more than 3,000 B-12 b/c of the hyper thing. I haven't gone higher, knowing that.

I now ask to be tested for B-12 along w/my D -- and I am low normal on D, even w/50,000 a wk (10,000 -- 5 days a wk -- I like breaking it down). And my B-12 is above normal by sev thousand.

I read that too much B-12 can't hurt you in several links.

Feel I could use another thousand at least, but am reticent to go there.

Would you think B-12 could cause the hyperthyroid???

My onc (not the nut onc in NY) says to stop B-12 cause the liver stores it for 5 yrs and I am above normal. He is brilliant and I adore him but he knows nothing re supplements.

I did stop -- for 2 days -- I was foggy, unable to focus, felt like utter crap on a stick and tried 2,000. Definitely need the 3,000. And, as I say, want more...

But TSH has apparently been low for a long time. Maybe it's my norm????

My BUN always comes in high I see on all my bld tests. I would ask the chemo nurses and doc why is that? No one really knows. Says I should drink more water.

LOL. Taking all my supplements -- I drink about 10 glasses of water a day!!!

My BUN being high seems to be "my" norm... It's always the same, and always registers high.

I should complain to the lab... )

Appreciate your input, Aussie...

[donocco]

I remember an article in some medical journal in the 1990s. They gave 200mcg Selenium every day to about 5000 doctors to see if it could prevent non-melanoma skin cancer. It didnt. But the rate of Prostate cancer was decreased by 63% in the men taking Selenium, the rate of Colon cancer by 50% and the overall death rate from cancer dropped 50%. All from taking 200mcg Selenium daily. Interesting. I forgot which journal it was.


Paul

[Andrea Barnett Budin]

Have contacted my wonderful first endo lady's office and they are forwarding my records to the new endocrinologist today. I see new guy Dec 13...

He will have both previous endo's records to go on. I am so relieved that I dared to try. It's been yrs since fab doc moved (and I feared my files which bad endo lady declined to get -- what would mess up her filing system??? WHO DOESN'T WANT A FULL-ER PICTURE OF A PATIENT'S MED HISTORY!!?? -- I thought maybe my records had gone to the IRON MOUTAIN, which is apparently like a giant black hole rendering everything therein irretrievable).

So, that office still has my records!! And, I was faxed an authorization to forward them and -- it's in the works! Yay!

I used to be so tidy about keeping copies of my records, but I have become disorganized and overwhelmed I suppose. Shame on me.

I did find some notes from great endo lady saying I was hyperthyroid in '07 and she just told me to stick w/the 3,000 B-12 and not up it. She never panicked.

Now that bad endo lady had me take thyroid scan and nodes were noted, I have to follow up yearly (though she was egging me on within mnths to repeat!!!). Recently had new thyroid scan, getting old records, and STABLE. So that's good.

I was warned, btw, that after core needle biopsy (so much a bigger deal than I ever dreamed) they will want to do ev 6 mnth U/S to check. Seriously. My regimen, like YOURS, is ridiculously overcrowded with appointments vs fun stuff... But, I am still alive to complain away, and I have YOU all to commiserate with me. No big deal. Just clutters up my "calendar".

Going this Fri to new gastro guy for IBS out of control since last June's abdominal surgery (BENIGN messentery mass) but did not make my IBS happy.

Geez, Louise...

And, this is no big whoop compared to so many of you! I have a bit of guilt even mentioning...

Love you all,
Andi

[Andrea Barnett Budin]

FINALLY! An update.

Got to see big endo man (who is a surgeon, but doesn't overreact and sell himself). Very bright. Listens. Gets it. Gets me.

Had my records as I prearranged a mnth ago in anticipation.
He told me I had 22 nodes. I did not know this. Only was told multiple. He put me on his table and ultrasounded his way around. Had a doc he was teaching, so I heard his dialogue with him and he also spoke directly to me. Lots of info. I love this! Not over my head. Full of details.

He investigated every single one of my nodes. Each from various angles. Those that look like comets are almost always benign. Those that look spongy -- same... On and on.

He sees absolutely no reason to be concerned. Nothing suspicious. No reason to biopsy. Most radiologists would say biopsy but he says I do not need this.

He also took lots of notes and sent his thoughts to my internist (as I now do not have an actual endocrinologist, having severed ties with the one who did not ever explain, discuss, included me in decisions as to how to proceed. Who thought I was hyperthyroid based on my low TSH and thought I might have a goiter.

We never discussed her read of my U/S, just that there were multiple nodes and they must be closely monitored and she could biopsy them. And she wanted me to go to the hospital for the uptake 123 test with radioactive iodine done on 2 consecutive days. Inject, wait, U/S or xray. Then repeat next day.

Doc surgeon said -- I am not hyperthyroid. I do not have a goiter. I could be followed by my internist. If my TSH is within 0 and 4 -- not to worry. If becomes elevated, return to him or see another endocrinologist. I have a lead on one for my husband and my dghtr.

I feel very relieved.

I have a batch of suggested blood tests from him, from cardiologist, from oncologist -- going next week. (NOTE: Have been down to only 1 immune booster a day w/200 selenium. THANK YOU FOR THE WAKE UP CALL ON THAT!)

I do not ever really take vitamin combos. I take 1 vitamin at a time. Isolating it, in capsule form if possible, preferably vegetarian. I don't like small amnts of this or that. I like to be in control. That 1 immune booster, which was affordable (vs the really expensive others) forced me to break my rule.

So hoping for YOUR supplements lists, ladies. So I can peruse and study. We need to share. We learn. Knowledge is always good. If not for us, to pass on to someone in need.

Oncologist today (every 6 mnth checkup). June I do my now annual (I have come a long, long, long way from ev 8 wks, to ev 3 mnths, then I recall begging for ev 4 mnths and was granted that but with a stern stipulation that NO LONGER... Finally I was semi annual and now -- annual AND WITH "NO" CONTRAST. WOOHOO. Blood work ev 6 mnths.

I'm the longest living Survivor of this onc. He says he talks about me all the time. Gives people hope. I do not have to tell you how much this means to me! It is a part of my mission! I am here for you. Anytime. That's what Sisters do...

When I finish my book, I pray it will reach many more and inspire and touch many more. When you have a goal that is for good, it will come to be! I BELIEVE!

If you have a doc who doesn't confer with you, listen to you, show a caring spirit, include you in team decisions (cause IT'S YOUR LIFE WE'RE TALKING ABOUT), if you have a doc whose staff doesn't return phone calls repeatedly even and especially during anxious times (trying to schedule scans, get biopsy results, get test results) -- you need to find another doc!

I am always a lady. But I do not allow others to disrespect me, especially when it comes to my health and well-being. That is the very least we can expect.

Now some surgeons are brilliant but have no time to talk or interest in advising or informing you. My onc today said when he has a choice of recommending one of those vs a really nice not so great surgeon, he goes with the former. I nodded. Exceptions have to be made. And surgeons are notorious for this inability to communicate.

When I had my core needle biopsy last August I truly lucked out. Excellent surgeon who was lovely and compassionate, and involved and talked me through from before till after. Sometimes there's a perfect storm. Plus -- it was benign.

Damn thing did hurt a lot more than I expected. Tender for quite a while in fact. Took much longer than I expected. But we got the job done. The something new was a little nothing. As I wish for each of you.

XOXO

Andi

[Jackie07]

"I feel very relieved."

Wow, Andi, what a scare ...

Glad everything has turned out fine. You take it easy now (and easy on the supplement ...

[conomyself]

This is great Andi! And I'm glad you found an endo you like.

Love,

Rachael