I have a friend whose 18 son has not been able find any significant relief from some hypothyroid symptoms. Background would include likely missed Hashi's diagnosis since childhood. Around age 15 he was diagnosed in error with BDD (Body Dysmorphic Disorder) and tried a variety of psychotropic meds with no success until obtaining the correct diagnosis of Hashimoto's. Psychiatric symptoms are improved however fatigue and loss of sense of well being is near incapacitating.
His initial antibody count at diagnosis was near 2000. After a period of time on full replacement of desiccated thyroid extract (4 1/2 grains) his antibodies have fallen to the 900s. But that is still so high. He does take Selenium to aid in reduction of antibodies.
Do you know of any reason why antibodies would still be so high despite full thyroid hormone replacement OR have you ever encountered cases where the only relief from antibody attack was removal of the thyroid gland?
Any comments would be appreciated. This boy's case has baffled several doctors.
The antibody levels often fall but not normalize with treatment. Eradicating antibodies is not usually the treatment goal, but if desired may require surgery and possibly RAI after surgery to knock out any remaining thyroid tissue. I would NOT recommend this to most patients.
There is no clear data that getting rid of antibodies is helpful with the exception of Thyroid Eye Disease. The selenium is appropriate for thyroid support and may help.
Following antibodies is not the "norm" but I agree that minimizing the antibody attack is appealing but not to the extreme of surgery unless there is a large goiter that is painful/compressive.
Hi Armourgal. That is a odd one, because I note that most folks who switch to Armour and take enough have a significant drop in the antibodies. You had stated that your friend's son was on "full" replacement of 4 1/2 grains. Could he have some thyroid hormone resistance going on, and might need higher doses to get the same effect as someone like myself on only 3 1/2 grains? I know a gal who is on 7 grains because of the latter. Has he tried going higher and what were the results?
His mom (and probably doc) is worried because his Free T3 is at the top of range and I guess they didn't want to give him any more. Probably because he had some adrenal problems because of all of this and had developed some rapid heartbeat. But he is also taking adrenal support now, so perhaps he could try a bit more now.
But from hearing his story, yes...he could very well be thyroid resistant since it appears his Hashimoto's developed over 10 years before it was discovered. I'll pass along the suggestion.
ya know, i've asked the mom that one time...and i don't think they'd done that. that would sure explain some of the fatigue.
so i'll ask again to see if they followed up on that.
thanks for jogging my brain on this.
Hi Ladies, I saw your posts to both myself and Dr. Mark.
I realize personal experiences of people do count for something, especially when something is happening with people on a wide scale. That's when the Medical Community itself should take notice but I believe there are people experiencing a number of different things on a wide scale and yes, there may be pattern to where certain groups of people having some common traits, are experiencing same results etc... However, for example, your mention of T-4 only not being of use to anyone. I have read several posts from people, some of them on this forum, who experienced hyper type reaction to Armour, even at low dose but did fine on Synthroid only. Also, if they added Cytomel T-3, to the Synthroid, same reaction happened, What you might call a hyper sensitivity to T-3. I personally prefer Armour to Synthroid, so am in your group of patient experience, except for feeling better at the 0.002 TSH you mentioned.
I suppose what I'm trying to say is that there will always be varying experiences to treatment and to say more people are experiencing our/your experience-success with Armour would be
simply too blind at this point to accept. Have you ever thought about going futher than just testifying of this experience and actually lobbying to get test-surveys done? I know you may respond, telling me these have already been done etc... and refer me to websites but it needs to be a very reputable, specific survey, giving exact hormone/TSH levels respondents had on their labs etc... It would need to be a survey conducted by officials that have nothing to gain but research results. In other words it can't be an independant who has a website to gain traffic from the survey or one who offers a service etc.., preferably someone connected to National Insitutes of Health, Center For Disease Control, NIAID, AACE, etc...
Also, some questions; 1. If a person titrates their med., up to optimal levels on hormones and also suppresses TSH below normal, how can this be done without a Dr. you get check-ups from, seeing these abnormal test results? Do you simply adjust dose yourself and get tests done via internet, without a Dr., plus order Armour without prescription?
2. Who are these people in the group you're in, who all have same experience as you? You said they number in the 1000s, is it a support group? Have they actually conducted surveys, that don't just generalize but give actual specifics?
Just curious and trying to learn. Thanks in advance for response.
I too, saw the lady here who had bad experience with Armour. It was quite unusual. I can honestly say that after hearing from hundreds who started Armour..I have only heard of maybe one or two who had a "strange" reaction like that. It is true that some folks experience difficulty initially because of low adrenal reserve, and once that has been addressed, they have no problem as long as they are mindful of the need to go slow. Others may have a Ferritin (low iron) problem. But unless one has an allergic reaction to the ingredients, it's hard to fathom why anyone would have problems with such a mild and natural medication.
And another thing that happens when people are adjusting their thyroid hormone (thyroid extract) upward to satisfy the body's needs...some parts seem to get worse while others are getting better. I have seen that in my own case. As I got enough in me to meet all my body's needs, everything got well. So I wondered if that was part of that lady's problem. Sometimes with hypo, things can get a bit worse before they get better and your body balances out and starts readjusting to no longer having a thyroid hormone deficiency.
So I guess I contrast that information with never ever hearing of a T4 med person past the 10 year point of taking it who didn't still exhibit symptoms or take medications that were clearly due to undertreatment. In fact I've heard dozens of Synthroid horror stories and yet this phenomenom isn't even being addressed by the medical establishment. If these folks complain, they are just brushed off and perhaps offered an anti-depressant.
oh great...i've forgotten your other questions...let me post this...and look at your other inquiries.
Ok..one more comment on the thyroid extract versus T4 med. Please keep in mind that is no financial motivation to show that desiccated thyroid extract products are superior. In fact it would be more profitable to the pharm. companies to trash that product. Remember synthroid is one of the top selling medications. So who are you going to get to do the studies?
Now - your other questions.
Some doctors do understand that a TSH can be suppressed and a person not be hyper. Some really do treat by symptoms and use Free levels as the guide.
And yes, some folks order their own bloodwork and meds via the Internet if they have not been able to find a doctor to help them get well.
I'm very active in one thyroid forum and am a member in several. Yes, it is a thyroid internet support group. We do conduct surveys among the members on a variety of topics...such as "TSH when diagnosed?", "what is your optimal dose of Armour", etc...
You hit it right on the nail--personal experiences do count!! Additionally, I have observed that there is a huge and growing body of thyroid patients out there who are having the exact same personal experience--namely, that natural dessicated thyroid meds are giving them FAR better results than being on T4-only meds.
And there's another personal experience that most all thyroid patients are sadly experiencing--docs who fail to give credence to their screaming hypo symptoms, even when a TSH is in the so-called "normal" range. It's a huge tragedy.
And I don't think I personaly have ever stated that T4-only meds are of no use to anyone. What I AM saying is that, in my experience and observation, nearly EVERYONE on T4-only meds is experiencing inadequate treatment!
And...as I think Armourgal mentioned..folks who experience a hyper reaction to Armour probably have sluggish adrenals, or low Ferritin--in my experience and observation, either or both cause that reaction. And both can be corrected, and ARE corrected routinely by those who understand this! I see it on the sites I belong to weekly!! The Natural Thyroid Hormones site on Yahoo is an example.
Yes, we would LOVE to see studies. But, studies are often skewed in the direction of those that finance the studies. So, it may be a long time coming....and in the meantime, all patients can do is hope to find a forum where they can read what other patients have discovered....and what most docs have not, for the time being.....
Thank you for your comments. The mom and I were aware that eradication of antibodies is not the goal, but that is truly one of the highest antibody counts I have seen..and is apparently contributing to this young fella's misery.
I had mentioned the Selenium because of the following:
German researchers have found that in areas with severe selenium deficiency, there is a higher incidence of thyroiditis due to a reduction in the activity of selenium-dependent glutathione peroxidase in thyroid cells. Selenium-dependent enzymes also have a number of effects on the immune system, and selenium deficiency can contribute to the development and continuation of autoimmune thyroid diseases. In the study, patients received 200 micrograms of sodium selenite supplements over three months. Thyroid antibody levels decreased by as much as 40 to 63%, and a small percentage of patients in the selenium-treated group had antibody levels that completely returned to normal. The researchers concluded that selenium supplementation may reduce inflammation in patients with autoimmune thyroiditis. Source: The Journal of Clinical Endocrinology & Metabolism, Vol. 87, No. 4 1490-1498
I have had a thyroid problem for 40 years, mostly hypo. Three years ago my thyroid went extremely hyper. This attack was contained then a few months ago I went more hypo, my throat itched and burned. At test said I had an antibody count of 1000. I started taking eltroxin, something I had avoided sice I was 16. The next test a few months later showed an antibody count of 5000. Neither my doctor or I know what this means. Can you help? What happens next?
5000 is quite high - some labs have changed the method of testing TPO recently and that could account for the difference (ie, not comparing apples to apples). Thyroid medications should not increase the antibodies. The immune system however could be mounting a stronger attack than previous -- there is a "painful-variant" hashimotos that can cause thyroid pain and usually is associated with high levels of antibodies.
Thank you for your comments. We did check the lab and everything was the same. Are there any problems associated with having such a high antibody count? I am just not sure what it means in terms of my future health. Does it have anything to do with thyroiditis?
Thyroiditis is a broad term for inflammation of the thyroid. Hashimotos is the most common and refers to a chronic inflammation due to antibody attack from the immune system. So yes, the antibodies mean thyroiditis -- but in this case it most likely is chronic lymphocytic thyroiditis (Hashimoto's). I do not think there is any additional concern with antibody levels this high - but my few patients who have had painful variant hashimotos have had high Ab's --- A thyroid ultrasound would be re-assuring to make sure there are not any suspicious nodules/masses in the thyroid -- again usually not significantly increased risk with high antibodies but would complete the evaluation.
i never thought i'd have a thyroid problem (i am 28) - i am vey active, in fact i just finished a marathon! i have been have all the classical symptoms of hypothyroidism for maybe 2-3 yrs now (and have been misdiagnosed with all kinds of other things) and since my TSH was 'normal' my primary care never did any other test. my obgyn ordered the antibody test that came back with the following: Antithyroglobulin of 168, and Thyroid Peroxidase of 1644, and a TSH of 3.751. is this Hashimotos? how can this be treated, and how could this impact my fertility (i.e. would i be able to get pregnant)?
The high antibodies certainly look like Hashimoto's Disease. And the TSH is above the "new" AACE guideline range of 3.3, so my opinion is that you should be treated. And in my opinion, the TSH is not reliable, since it doesn't measure thyroid function. It measures the amount of Thyroid Stimulating Hormone, which comes from your pituitary. So, it tells how loud your pituitary is yelling for thyroid hormone, but not how well your thyroid is responding. I have heard that for Hashi's a good therapy is complete replacement of thyroid hormones, i.e. you take enough to totally suppress your own thyroid's output. But, your thyroid puts out a number of hormones, and the standard of care is to give you Synthroid, which contains only ONE of those hormones. I take Armour thyroid, which is desiccated pig thyroid, and it contains ALL the hormones your own thyroid makes. Seems to me that if my thyroid would produce all those hormones if it worked right, then I must need them all for something. Good luck with your treatment.
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