Does anyone have any experience with taking over the counter thyroid glandular products?
I currently have a preliminary diagnosis of Hashimoto's thyroiditis, based on ultrasound appearance. However, my TPO and TGB antibodies are negative.
I have a very strong family history of hypothyroidism, as well as a child who had transient neonatal hypothyroidism.
I also have a long standing personal history of alternating hypo and hyper symptoms... Extreme drowsiness, fatigue, coldness, and bradycardia, alternating with insomnia, (also with fatigue), tachycardia, palpitations, and hyperhidrosis. I have also had variable orthostatic intolerance, muscle spasms, tremors, and fasciculations, widespread peripheral neuropathy, brain fog, hypoglycemic episodes (with LOW insulin levels), elevated LH and testosterone, allergy symptoms, and intermittent, severe, exercise induced vasomotor rhinitis that will not respond to any type of antihistamine.
I also have GI symptoms with alternating constipation, diarrhea, and bloating.
I have also had unexplained lymphadenopathy, and multiple symptoms suspicious for some type of autoimmune disorder.
I have also had irregular menstrual cycles, with severely heavy bleeding, and 3 early miscarriages.
I have been diagnosed with ADHD (inattentive only) and depression. And have been on Adderall and an SSRI for several years. They help, but I have to be very careful. A little too much Adderall and not enough sleep, and I have severe side effects. And how much is too much varies from one day to the next. I often cut my adderall in half and go slow. Other times it simply will not work. I can take a full dose and still have a very difficult time staying awake, much less focused.
In recent years, the hyPER spells have dwindled, and fatigue has gotten progressively worse.
My primary care physician has started low dose levothyroxine to see if it would help. However the endocrinologist is very opposed. Declaring that my levels are "just perfect". She DOES think I have Hashi's (and that son's transient hypo state was probably due to gestational hypothyroidism), but insists that there is absolutely no benefit in treatment unless levels are out of range, and that it will likely be ineffective or throw me into a hyPER phase. (I also have a family history of severe osteoporosis, and personal history of stress fractures).
After doing some extensive research, I am reasonably convinced that I might find some relief from both extremes by taking enough replacement therapy to lower my TSH and thereby suppress my own unruly thyroid gland. I also do not believe that my levels are anywhere near "perfect".
TSH 2.1 (has been over 3 within past year)
I am seriously considering taking an OTC desiccated thyroid product such as that available from http://www.nutri-meds.com/
Does anyone have any experience with this?
As I read your comments, my first thought was "golly, she's really hypo"... Then when I got to the results, my thought was confirmed... I think.
What are the reference ranges for the FT3 and FT4? Ranges vary lab to lab and have to come from your own report. That said, if your ranges are anywhere near what we normally, see, your FT levels are anything BUT perfect, since both are on/near the floor of the ranges.
You pcp had the right idea, starting you on the levo. If I were you, I'd try to ditch the endo and stick with the pcp.
It's not the least unusual for symptoms to show up long before lab results show "out of range". AND, just being in range doesn't mean they're good enough. With levels as low as yours, you'd have to be on a pretty hefty dose of levo to throw you into a hyper phase.
Many doctors think that low TSH causes osteoporosis, but that couldn't be further from the truth. Elevated levels of FT3 increase metabolism, which is what causes the osteoporosis. You have a long way to go, before that should be an issue.
All of that said, the OTC thyroid support supplements you can buy, are not allowed, by law, to have any measurable thyroid hormones. They're simply ground up thyroid tissue, mostly bovine. Desiccated thyroid hormones are produced from pig thyroid, which is most like humans, but pigs produce a lot more T3 than humans do.
You'd be much better off to go back to your pcp and see if you can continue with the levo to see if it helps.
There was a study in the OTC thyroid supplements and in some cases the thyroid hormone levels exceed that of prescribed medication!
Excerpt from the article: Popular Over-the-Counter Thyroid Supplements Contain Actual Thyroid Hormone...
"Surprisingly, nine out of ten supplements showed detectable amounts of T3, ranging from 1.3 mcg to 25.4 mcg per tablet.
Taken at the recommended dosage, five of the ten supplements delivered T3 quantities in excess of 10 mcg/day, and four delivered T4 quantities ranging from 8.57 to 91.6 mcg/day.
Among the five thyroid supplements labeled as containing bovine (cow) thyroid tissue, extract or concentrate, one had no level of T3 or T4 detectable; two contained T3 only, and two showed detectable amounts of both T3 and T4.
The researchers concluded that most of the OTC thyroid supplements that were studied contained clinically-significant amounts of T4 and T3, in some cases doses that exceed typical prescribed amounts being used for thyroid hormone replacement treatement."
My labs with reference ranges:
TSH 2.03 (0.4 - 4.5)
FT4 0.9 (0.8 - 1.5)
FT3 2.61 (2.18 - 3.98)
I would love to ditch the endo and stick with PCP, but I have been delegated to her because of the nodules. I have a comprehensive US scheduled, and possibly will need a biopsy.
Thanks for responding!
If you have nodules that will require biopsy, then I guess you'll need the endo. Perhaps you could "train" her a bit in thyroid matters by explaining just because levels are "in range" doesn't mean they are "perfect" or even good, and that symptoms can appear before labs go out of range, but that doesn't mean you're not hypo/hyper. You might explain that the benefit of treating before levels go out of range is that you might feel better.
Actually, I'm wondering if there's a chance that you might be able to get a different endo. Because she won't treat until your levels go out of range, tells me that she's only looking at the numbers (and probably, mostly TSH) and is not considering what inadequate hormone levels can do to the individual. In other words, she needs to treat YOU, not the numbers. You might suggest that to her.
Now on to the numbers: your levels, in fact, are pretty dismal, as I suspected they would be. Most of us find that we need FT4 to be about mid range (50%); yours is 14%. Rule of thumb for FT3 is upper half to upper third of its range (50+%); yours is 23%.
It's not uncommon in early stages of Hashimoto's to swing from hyper to hypo and back, even having periods of "normal" in between.
Suppressing TSH is not the ultimate goal. TSH is merely a "messenger" and it can fluctuate by as much as 75% over the course of a day; not to mention that it's affected by any number of variables. The ultimate goal is symptom relief and that's accomplished by targeting your actual thyroid hormones to a level that's right for you. With levels like yours, there's no way you can be hyper, but some symptoms can apply to either/both hyper and hypo. Your bouts of diarrhea could have something to do adjusting your adderall.
I'm aware of the study that was quoted above, and yes, in some ways, it would have been nice if they'd said which ones actually had the hormones. However, there are drawbacks to taking the OTC supplements.
First off, by law, those supplements are not supposed to have measurable thyroid hormone; they are to be strictly ground up thyroid tissue, with whatever vitamins/minerals/herbs each brand uses.
Secondly, since they aren't regulated, you really have no idea what you're getting... maybe one batch of pills will have some hormone, the next won't. To my knowledge, the study mentioned above did not test different lot numbers of each brand of OTC supplements; they simply tested various brands, so one lot number might have some hormones, while the next doesn't or they could have varying amounts. Consistency is very important when taking thyroid replacement hormones.
Last, but not least, in the unlikely event that you found a supplement that, consistently, had some hormones and would by some chance increase your hormone levels, you'd have much less chance of getting your endo to put you on a prescription medication, like you need.
Because of the extreme drowsiness and fatigue you have, I'd recommend that you get vitamin B-12 tested. B-12 deficiency can cause the most unimaginable fatigue/tiredness. When my levels were low, I'd get to the point where I was afraid to drive somewhere, because I might fall asleep and no amount of sleep helped. Long term vitamin B-12 deficiency can also cause nerve damage, resulting in peripheral neuropathy... I also take a 3 times daily med to treat that, since, for years, my doctors put my fatigue down to depression or being a hypchondriac and didn't even think to test B-12 levels. I, now, have permanent nerve damage.
You might also want to get tested for vitamin D. Deficiency can cause some thyroid like symptoms, or exacerbate them. And while you're at it, you could ask for a ferritin test. Ferritin is an iron storage hormone and iron is necessary for the production of thyroid hormones.
Some people with hypothyroidism are deficient in all three (vitamin B-12, D and ferritin).
I have had b12 and folate levels checked, and they are high normal.
Ferritin and vitamin D might be something to consider, although I regularly take a high quality multivitamin supplement.
My last really bad spell was 2 months ago, and lasted a couple of weeks, but I did not have the labs drawn until after the worst of it had passed. There were days when I could not even drive home from work safely without stopping for a short nap. And I could sleep 15 hours and still feel completely exhausted. My oral temp was running 95 - 96, and I could not get warm. Resting heart rate was 40's to 50's.
I really think my last significant hyper phase was almost 4 years ago, but it was pretty ugly when it happened.
I am not optimistic about convincing the endo of anything. She had an evil glint in her eye when she declared that she only does things that are "evidence based". I am going to see how next appt goes. And then have a frank discussion with my pcp.
I have always believed that it is imperative to do what needs done regardless of how I happen to feel. I work full time, make it a priority to exercise regularly, and eat good food. I am not sick. I just do not feel like I am functioning optimally, and it is hurting my ability to care for my family. As we all know, allopathic medicine is all about treating overt disease, not prevention and certainly not optimizing function.
Thanks again for the thoughtful responses!
I can certainly identify with the way you feel, because I spent a lot of time there. Like you, I worked full time and didn't really feel "sick"; I just felt like cr@p most of the time.
Well, if you endo is determined that she won't do anything that's not "evidence based", you're probably not going to get very far, though I think that any decent doctor would certainly consider your symptoms as "evidence" that something isn't right!!
Yes, I agree that you should have a frank discussion with your pcp. Maybe he can refer you to a different endo, who might be more compassionate.
While I realize that mainstream medicine is a lot about treating disease, it's moving more toward prevention. Hopefully, that will soon be a prime focus.
Ask your endo if your symptoms are "EVIDENCE BASED".
Ask your endo what is wrong with trying medicate to get to 50% (the middle) of the range? How can the endo not say that asking for getting to the middle of the range is shomhow being radical?
Others can show many studies that ARE "evidence based" that show that TSH is a crappy unreliable test.
Is it "evidence based" where many, many, many people feel better when they are up in the range of FT4 950% of range) and FT3 (upper 1/3 = 66.7% of range) as stated above causes them to feel well REGARDLESS of what their resulting TSH was.
Exactly what "evidence" is the endo looking for? I tend to think it is only evidence that matches the endo's preconceived biased mindset answer.
I work in health care, so I see both sides of the coin all too well. There really are a lot of patients out there who refuse to follow healthy lifestyles, are hypochondriacs and / or malingerers, and who want a little pill that will fix all their problems without any inconvenience to themselves. These patients often have very little understanding of physiology or chemistry, and can be a tremendous drain on healthcare resources. On the other hand, "evidence based" medicine treats numbers. Not patients. Just because you lack hard evidence that something exists does not mean that it is not there. Additionally, risks versus benefit needs to be taken into consideration. Honestly I think it is a little ironic that it is easier to get a script for amphetamines than for thyroid hormones. Is it really that dangerous to try it and see if it improves symptoms? I think not. I think the problem is (in part) a firmly established stigma against "whiny female" disorders. Unless you have cold hard evidence of raging thyroidal illness, it seems that you are suspected of having psychosomatic issues or hypochondriasis. Doctors would rather pass out blanket diagnoses like fibromyalgia or chronic fatigue syndrome than to take the time and effort to figure out what is going on, or risk having to constantly adjust medications based on patient complaints. This attitude in medicine is why I seldom go to a doctor... unless I think that there is an available treatment option that might actually benefit my health.
I used to believe in evidence based medicine. That was until it almost killed one of my kids. The evidence was there. The doctors just ignored it because it was atypical.
"Doctors would rather pass out blanket diagnoses like fibromyalgia or chronic fatigue syndrome than to take the time and effort to figure out what is going on, or risk having to constantly adjust medications based on patient complaints." How true that is, when both fibro and CFS can often be treated with thyroid hormones. One problem I see with some of this is pharma... the drugs used to treat fibro and CFS are much more expensive than those used to treat thyroid disorders. My daughter has "fibro" and SLE - I do question the fibro dx, but she swears up and down that's what it is... no, she's not a doctor.. lol Just one of the drugs that she takes for her "fibro" costs more for one month, than my thyroid med (Tirosint, not covered by insurance) costs for 6 months. I've mentioned that she might want to get her thyroid tested. She says they've tested it and it's "fine", yet she declines to get a copy of her labs for me to see. Really makes me wonder!!
It does sound a little suspicious that she might have some thyroid issues :-)
I have never been personally diagnosed with fibro or CFS, although I have seen my sister being sent down that road (she has hypothyroidism).
Frankly I would never allow a physician to diagnose me with fibro... because in truth it is usually a diagnosis that they give when they really do not think anything is wrong, but patient keeps insisting that there is. As someone who sees the eyes rolling after patient walks out the door, I can say that in my experience, the majority of health care providers do not see it as a "real" diagnosis. Although they may use it when it is convenient for them to do so.
I totally agree about the Fibro dx, but I guess some patients would rather have a name tacked onto their symptoms and get "treatment", whether it's what they need or not. Studies have shown that most fibro can be traced back to thyroid issues. CFS, on the other hand, is beginning to look like another autoimmune, thought that hasn't been completely proven yet.
I also have a sister-in-law with Fibro... both she and my daughter talk about "flairs" and how bad the pain is, and their flairs seem to be identical to the "attacks" I used to get on my thyroid... muscle/joint aches/pains, fatigue, etc.
Has your sister gotten her thyroid levels to a point where she no longer has the fibro symptoms?
Actually my sister does not complain much at all since she was started on thyroid medication... It was the 20 or so years before that when she was sure she was dying from some awful, undiagnosed disease, or at the very least had CFS, Lyme disease, cancer, and / or MS along with her fibro. :-)
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