I just posted this on another thread earlier today...it must be Lithium Week:
"Experts don't understand the exact mechanism, but the drug lithium can prevent your thyroid from functioning properly. Lithium is known to cause goiter (an enlarged thyroid), as well as hypothyroidism, and chronic autoimmune thyroiditis. There is also a link to hyperthyroidism in some patients."
Chronic autoimmune thyroiditis would be Hashi's.
So, would you think that despite only taking it for 6 weeks as a child, it could still have an effect on thyroid function several years later?
I don't know. If it really can "cause...autoimmune thyroiditis", then it is possible. I have never read a scientific study that actually established a causal link between lithium and Hashi's. If you find one, I'd love to see the link. However, I have read of a number of people who became hypo on lithium since it inhibits the thyroid's ability to produce T4.
Antibodies can be present for years, or even decades, before they do enough damage to cause labs to go out of range and to produce symptoms. Hashi's is the most prevalent cause of hypo in the developed world, so you certainly don't have to have taken lithium to get it.
Be sure your doctor orders both TPOab (thyroid peroxidase antibodies) and TGab (thyroglobulin antibodies) since both are required to rule out Hashi's.
Are you currently on thyroid meds? Does your doctor test FREE T3 and FREE T4 as well as TSH?
I've been on 25mcg of levothyroxine for 6 weeks now. I only had a few good days during my second week, but now Im back to feeling the way I was before. I was only told a TSH number over the phone, but when I called back to schedule my 6 week blood test, I asked about FT3 and FT4 and the nurse told me what all was included in the thyroid panel, by sending me here:
Looks like FT4 is looked at, but I don't know about FT3. I asked about the two antibody tests, and if they could be done this week too. She said sure, but I'll ask again to make sure it's included. She also said that she would give me a copy of the results when I came in. So if that info is on it from June, I'll post it.
It's not unusual to not feel any better or even feel a little worse when starting meds. The initial dose is usually lower than the dose we end up on. Also, your body's been compensating for the lack of thyroid hormones for a while, so everything has to rebalance. However, it's usually best to start out low and increase as tolerated to avoid hyper-like symptoms from too much, too fast.
I followed your link and found this:
"Test Includes: Free thyroxine index; T3 uptake (THBR); thyroid-stimulating hormone (TSH); thyroxine (T4)"
This is not what you want at all. FTI (free thyroxine index), T3 uptake and thyroxine (which is total T4, not FREE T4) are all considered obsolete tests of little value.
These are what you want:
The first is FT3, and the second is TSH and FT4. I can’t believe (yes, I can) that Labcorp doesn’t have a thyroid panel that includes FT3. As I said, that's total T4 in that panel...not the same at all. T3 uptake is actually an indirect measure of T4. You want to get the nurse to change what she's ordering.
Thank you so much for the links. Since she sent me to the site, I just assumed all that technical garble was free T3 and free T4. Im gonna ask for the following:
224576 - TSH, Free T4
010389 - Free T3
006676 - thyroid peroxidase antibodies
006692 - thyroglobulin antibodies
I don't like telling people how to do their job, so hopefully I'll have enough of a spine left Friday to do so. I am grateful that this doctor finally figured out what was wrong since the others didnt, but when I look back at it, he was just the lucky one that got an out of range TSH. Wished I had known more about thyroid conditions. I had excuses/theories for every symptom.
The tests you list are perfect.
Just keep in mind that YOU are the customer in this relationship with your doctor. While I know that many doctors don't think a lot of FT3 testing, I'm still appalled at what Labcorp calls its "Thyroid Panel". Everything in that panel, except TSH (and its efficacy is always questionable) is considered an obsolete test. Just think how many doctors order it without even looking to see what it includes. I wonder how many of them even KNOW that what they're looking at is old school.
Good luck getting your lab order changed. Just go in there aned ever-so-sweetly refuse to take "no" for an answer. Let me know how it goes...
I know that things in any scientific field can become outdated very fast, but Im curious as to how fast. My doctor opened up practice in 2006. Before that he of course did residency, and whatever is necessary for medical schooling. I wonder at what point did this all become outdated. I guess not very long ago, as previous tests I had simply showed a TSH. Just one number. THAT was the panel. You came in with symptoms, that's all they look at.
But I was impressed however when he went through a checklist of what systems did I or did I not have. After going through them all, he mentioned it being one of 3 things. When he mentioned thyroid, I knew that it simply could not be that, because I assumed all that did was make people fat, and I wasn't fat. I was so certain it was a vitamin deficiency, but it turned out it wasnt.
Also, don't know if it matters, but he's a DO, not an MD.
The problem with all this is that it's self-perpetuating. Docotrs learned what they learned in med school many years ago, and what do they do? They teach the new generation exactly what they learned. Organizations like ATA and AACE further perpetuate the disinformation. Last summer, AACE and ATA issued a joint position paper in which they reiterated that TSH was the "gold standard" in thyroid care. They acknowledged that FT4 was "sometimes" important for some patients and went on to say that FT3 was irrelevant for hypothyroid patients. How do you fight that?
My PCPs (husband and wife team) are DOs. By and large, I like their approach a little better than your traditional MD's. I think they tend to be more apt to try a different approach before throwing drugs at you. It sounds like your doctor was listening, and to me, that's THE most important thing a doctor can do. I've had doctors that wouldn't listen, and that I find more frightening than anything else.
I don't expect any of them to know everything...medicine is way too complex for that in the 21st century, but I do expect them to listen to me and believe I know what I'm talking about.
Ok, so I went for more blood work today. Did not see the doctor, just the nurse. I had her add the tests that I mentioned earlier. I noticed that in addition to Labcorps "thyroid panel" they were going to test for b12 too because it was high and out of range, even though I stopped supplementing and felt my worst yet from going a month and a half without it. I made sure to let her know that I took a supplement the night before so it probably might be even higher.
She said that was fine and it was ok because I would just pee out the excess, and that the doctor just wanted to monitor it in order to rule things out. I don't remember exactly what she said, I just know that it felt like the doctor wasnt yet 100% sure what was wrong with me. I haven't yet had either of them tell me that Im hypothyroid, even though I'm being treated for it. It sounded like my response to the medication was going to help them rule out things. I wonder what would happen if I didn't feel any different. I don't, but there was that one special week I had. I wonder why I couldn't keep that feeling. Why week 2, but 3-6 were normal (for me)
Anyway, hopefully the tests I added will rule things out. Their "thyroid panel" had everything in range except TSH. I should know the results by Monday.
Oh, I forgot to ask, is it possible that my b12 level is high because my body isn't absorbing it like its supposed to? Could hypothyroidism cause that? I just know that I felt absolutely miserable when I went off it, much better (normal for me) when I started taking more, but surprised that it was high during that time I was off it.
It's not unusual to feel better for a while when starting meds and then have a bit of a "relapse". While hypo, your body compensates for lack of thyroid hormones. The adrenals, for example, are famous for stepping in and taking over the role of the thyroid hormones. When you re-introduce thyroid hormones, the body has to rebalance. However, at the very beginning, you are probably getting the beneift of both the added thyroid hormone and the compensation. When the compensation adjusts back, you don't feel as well again. As you get closer and closer to your optimal dose, your "special week" will get longer and longer.
If your body weren't absorbing B-12, your level would be low, not high. Do you have an actual result and range? Perhaps you just needed to cut back a little bit on it rather than eliminate it completely?
Why did they give you Librium when you were young? If I were to take a guess, you were exhibiting Thyroid symptoms and they misdiagnoised you with a mental issue. Now that you are in charge of your own healthcare, listen to these people on this forum. The testing they ask of you spoke volumns as to my current health condition. My doctor (endo) kept me sick for 10 years. He refused to run the proper labs, never treated symptoms, and I followed him like a lost puppy. I am very new to MedHelp but my progress is rather remarkable; confirming all my suspicions......it is and was my thyroid the whole time. Still working on balancing and report my labs as I receive them to this forum. One day I hope to give advise but right now I am taking all the advice I can get. Good luck and i hope you feel better soon.
Thanks a bunch goolara. You seem to really know your stuff. Im glad I posted that Labcorps link. I wouldn't have been able to ask for the specific ones I needed.
My B12 level was 1115 with 211-946 being the range. That was at least 6 weeks of no supplementation and a few days with no daily vitamin, but I do eat a lot of meat, so I dunno. I just know that after a month I started to feel it, and everyday got worse. I never had vertigo until that week of my visit. And it went away as soon as I started back on it.
I would love to not take supplements, but some crazy doctor in the 90s told my mom that I would need to take B6 and B12 for the rest of my life. I had been on all sorts of other vitamin supplements during this time, but it was too much of a hassle since I had so much trouble swallowing them. Thankfully my parents gave up and instead of forcing me to continue with just the two, I went without ever since 6th grade. Didn't seem to feel any different with or without them. But I started taking just the two again when my brain fog set in during my early 20s
I was pretty hyperactive as a kid. Got in trouble a lot. None of the teachers or other children liked me. One teacher even thought I had ADHD and had my mom test me. It was somehow ruled out, but I still ended up at some psychiatrist who had a neurology background. I was tested for enzymes and hormones, but don't remember what the deal with that was. Being 10, I just thought the word "dopamine" was funny. The bulk of it was allergy testing though. The belief was that mild allergens were causing my behavior problems.
Anyway, rather than give children Ritalin or Adderal, he used supplements instead. Since I also suffered from depression, he prescribed Lithium. I remember this actually because it came in a prescription bottle, rather than something off a shelf like the others. After 6 weeks he asked me if I was still depressed. I was, terribly, but I lied and say no because I didn't want to take any more pills than I had to. I never felt any change with whatever I took. I was miserable in the environment I was in. No pill is going to fix that. I probably should have just been home schooled.
As for being hypothyroid as a kid, I'm not so sure. I would assume that by not being treated for it, I would of had difficulties growing and maturing physically. Every time I visited that doctor during age 10 and 11, he weighed and measured my height. All seemed good to him. All the steps you go through in becoming a "young woman" came right on time without use of hormonal replacements. I would say that my first real symptom came when I was 17, maybe possibly even 16, but I remember that by the time I was 17, I was now bringing a jacket with me everywhere.
Your B-12 is high, so that "shouldn't" be causing your symptoms. You've been taking B-12 for a long time. Has your level been monitored right along? I'm very curious how your current level compares to your historic level. What's much more important than comparing yourself to the population range is comparing yourself to yourself when you feel well. If your level has been even higher for a number of years, perhaps this current reading actually represents a "deficiency" for YOU.
Symptoms of B-12 deficiency and hypo can mimic each other. It's also possible that your discontinuation of your B-12 supplement coincided with your thyroid deteriorating, and your symptoms are now thyroid symptoms???
Do you remember why your doctor told your mother that you'd have to take B-6 and B-12 for the rest of your life?
Did you get your labs drawn yesterday?
"Do you remember why your doctor told your mother that you'd have to take B-6 and B-12 for the rest of your life?"
Umm... ...kinda embarrassing to talk about really. Both were supposed to help with the connections in my brain. From my research, B6 helps with neurotransmitter synapses, so that makes sense I guess. Didn't ever think I had a problem with that growing up. But of course, when the brain fog set in, I figured (without researching what it did exactly) I better be taking it, and it would (should) help.
I never knew how much I was supposed to take, and figured that even if I did find the amount the doctor suggested, it would be outdated as a 10yo child would need less than an adult, so I just slowly increased as needed. However B6 has a toxicity level, which for long term use meant no more than 200mg a day, which was two tablets, one in the morning and one in the evening until I stopped for the first blood test. Because of the thyroid medication, I now only take one 100mg tablet at night.
Wished that was tested in addition to the B12. I did bring it up that I had been taking it. I mean they tested for Lyme disease. They tested for a ton of things, despite the doctor claiming it could be one of 3 things. Id like not to take either supplement, but I am unsure which of the two was actually helping to mask my symptoms. I don't want to test anything until my thyroid level gets somewhat under control, because that was awful when I stopped. I didn't realize just how sick I was.
"Has your level been monitored right along? I'm very curious how your current level compares to your historic level."
I did my homework last week and visited two previous doctors that I had blood work done. Neither ever tested B12. My only testing was when I was 10 and 11. So from 1994-2010, I had no blood work done for anything at all. I had thought about seeing if I could pick up my records from that 90s doctor, as he is still practicing in the very same location as before, but its kinda a long drive, and I am not sure what they do with 20yo patient records.
So is that really possible that a high out of range level can actually be a deficiency (low level) for others? Im not sure why the 90s doctor said I needed it for the rest of my life. I don't think he said I was deficient. And if it was lifelong, I would think that I would be tested for pernicious anemia. Im still taking it though despite being high. Until I actually get to SEE my current doctor, and ask him my list of questions, I'll keep taking it.
"Did you get your labs drawn yesterday?"
Yes. I should get the results Monday, maybe Tuesday. I am very interested in the results. I have a feeling that this is a learning experience for my doctor as well, and if the results of my added tests show out of range, he may realize that these tests are indeed important, and that his patient was pretty wise to add them. Also, I mostly just want my dose increased. I know this all is a slow progress, I just want my "special week" back.
I don't know about B-12, but I do know that there are certain (relatively rare) conditions in which people need exorbitantly high levels of thyroid hormones to feel well. It's called "thyroid hormone resistance" (THR), and I'm wondering if it might have a counterpart in B-12. It might be something to research.
Pernicious anemia is the inability to absorb B-12 through the gut. That's not your problem since your B-12 level seems high even without supplements. If you have PA, you have to inject B-12 (or take it sublingually or in a nasal spray) to get your B-12 level to go up.
It is a slow process. Believe me, I know. There's no way around it, and you will feel better and better as time goes on. I look forward to seeing your labs.
Got my results today
TSH 6.310 .45-4.5 HIGH
T4 11.1 4.5-12
T3 uptake 26 24-39
Free Thyroxine Index 2.9 1.2-4.9
Free T4 1.26 .82-1.77
Free T3 3.6 2.0-4.4
TPOab 475 0-34 HIGH
TGab 22 0-40 but there's a note that says on Aug 19 2013 the range will change to .0-.9
So thanks to the added tests, the doctor was able to determine hashimotos, and is going to increase my meds. He is also going to refer me to an endo. He feels comfortable treating me, but said that it was my call. I decided to go with an endo anyway, considering that none of the other tests were added until I asked for them. I would have just been treated for TSH until results show normal.
My B12 level was also >1999 with a 211-946 range. I made sure to let them know I took a 2500mcg supplement the night before but reminded them that the 1115 range was me not taking it for 6 weeks. I did some research on "functional b12 deficiency." It's a possibility, but requires different testing. High levels could be an issue with the liver, but my theory is that all my organs are probably having difficulty functioning like they should due to being hypO. Im not going to worry about any of my symptoms until my levels are balanced. If they go away, then I know the cause.
Yes, definitely Hashi's.
What are you taking now, and what is he increasing them to? Your FT3 and FT4 actually look very good. FT4 is just a little below midpoint of range, and FT3 is exactly at the lower end of upper third of range. TSH is still high which indicates that your pituitary would like levels a little higher.
How are you feeling?
So, is "functional B-12 deficiency" something like thyroid hormone resistance where levels have to be higher than for most people because cells can't use the B-12 otherwise?
I think balancing your levels first is a good plan. Most of us had no idea when we started out just how many of our symptoms were thyroid symptoms.
Another question in the "help goolarra with her theories department": Do you typically have a high tolerance to meds in general, i.e. do you usually have to take more than usual to get the same effect as other people?
I was taking 25mcg and am now taking 50mcg as of today. Glad my pharmacy autofilled and texted me because I didn't know when the doctor was going to send my prescription. I had to walk in for my results Tuesday an hour before they closed and the nurse couldn't tell me how much the doctor was going to increase it to because she did not know. I had enough of my 25mcg that I could've taken two while waiting, but would not do so unless I knew for a fact that it was going to be 50. Don't wanna be hypER.
How am I feeling? Just really really tired. I think I might've gotten 10 hours of sleep last night, but had to have my husband wake me up because I did not realize how late it was. Too tired to care about my brain fog and being a zombie. Maybe in a week or so I'll have some of those special days back.
Functional B12 deficiency - haven't really found much info about it yet. Seems to be something new, requiring different testing rather than how much b12 is actually in the blood. I don't think it's resistance. I just think my body, though able to absorb it into the blood, isn't actually capable of using it. And for whatever reason, Im not expelling it like Im supposed to. It may possible that I AM deficient, and for that reason. Why I felt so much better with the supplement, I don't know. I didnt take it last night, and might not continue, as I felt so tired lately despite my FT3 and FT4 being good, and taking the supplement daily. I feel almost as tired as I did the day I went to the doctor after not taking it for 6 weeks. No vertigo yet though. I stopped taking the B6 too out of fear that excess was floating around in there too with nowhere to go. Since that has a toxicity, Im just going to play it safe until I can figure out why my B12 level is so high.
[i]"Another question in the "help goolarra with her theories department": Do you typically have a high tolerance to meds in general, i.e. do you usually have to take more than usual to get the same effect as other people?"[/i]
No idea. I know that whenever Im prescribed Vicodin or hydrocodone, I don't ever feel it, unless I take two. I've been taking Benadryl to sleep, and hafta take two of those as well. For my size, I would assume one would be enough. But suggestive dosage is always 1-2, so I'm technically not over doing it.
I'll be interested to see how you feel on your new dose...and what it does to your labs.
Thyroid hormone resistance is a confusing term. What it means is that people who have it have to run their thyroid hormone levels, especially FT3, extremely high (and I'm talking several to several hundred times the upper limit of the range). They don't have trouble absorbing it, and their serum levels are fine, but they can't use it. When their levels are very high, the thyroid hormones get into cells, when they're not, they're hypo. So, this seems like an analagous condition to functional B-12 deficiency. The serum levels don't matter because that says nothing about what's being used by your cells.
Have you had an iron/ferritin panel?
As to the theory: I have the opposite problem that you have (it would appear). I'm very comfortable with low FT3 and FT4 levels, and I am extremely sensitive to meds in general. You take 2 with a dosage of 1-2, I'd take 0.5. For my size, I would assume that I should be able to get away with 2, but everything knocks me for a loop. So, I'm just wondering if there's something systemic going on for each of us, some reason that levels have to be very high for you and very low for me. Your B-12 siuation just got me thinking about that.