I personally have Hashimotos. Been on synthesis for it about 4 years. Currently TSH is around 1 while taking 125 mcg.
My problem isn't my own... My husband, who rarely goes to the doctor, finally went for a check up. He had a full blood panel run. He is 32 and in pretty good shape. His cholesterol was a bit high. Uric acid a bit high, testosterone drastically low for his age, and vitamin B12 deficiency. The thyroid panel really caught me off guard though. T4 and T7 were extremely low. And TSH.... Wait for it.... 167.8. That's not a typo. I pretty much freaked out. The doctor called him in immediately and got him a referral to see my endocrinologist for next Tuesday.
Have any of you seen a TSH that high? Before you ask, the had enough blood to retest the sample.
While that's a high TSH, we've actually seen higher. Keep in mind that TSH is a pituitary hormone and should not be used, alone, to diagnose or treat a thyroid condition. It should, at most, be used as an indicator. In this case it indicates that your husband is very hypo.
More important is the Free T3 and Free T4 results, which are the actual hormones produced, most important, of which is the Free T3, because it's the one utilized directly by the individual cells. Free T4 is a "storage" hormone, and must be converted to FT3, before it can be used.
What is that actual result of the T4 test your husband had, and was it free or total - they are not the same? Please post thyroid sample results, along with the reference ranges used by the lab, since these vary lab to lab, so must come for the patient's own report.
What did the doctor "call him in"? A script for medication? If so, which one, at which dosage?
Your husband should also get tested for the thyroid antibodies, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab). These are the tests that will confirm/rule out Hashimoto's, which is the most common cause of hypothyroidism in the developed world.
What was the actual level of the B12? Did the doctor start him on supplements/shots?
The doctor didn't call him in an rX. he called him into the office to explain to him some of the results and tell him that he needed to be referred to endocrinologist.
I'd have to beg to differ on the T3 and T4. Those are not always the best indicators. As a person with hashimotos, mine often arent all that our of range. But my antibodies and TSH were main pinpoints. Since TSH is created from pituitary as a signal to the thyroid that it needs to do its job.
His MCH was 35 (range 27-33) with low red blood cells which is indicator if B12 or folate, more likely B12.
TSH 167.8 (range .4-4.0)
T4 1.7 (range 4.9-13.9)
FTI T7 .5 (range 1.5-3.5)
T3 in range
TSH is a pituitary hormone, which fluctuates for a variety of reasons, even intraday and very often does not correlate well with symptoms or FT3/FT4 levels at all.
Neither antibodies, nor TSH causes symptoms, lack of adequate thyroid hormones, FT3/FT4, does. Symptoms can occur even with "in range" results, if results are low in the range. Most people feel best with FT3 levels in the upper 1/3 of the range and F4 at about mid range.
What was the actual result of the T3, with reference range? Were the T3 and T4 tests for free or total? Testing for total T3 and total T4 is obsolete and of little value. You need the "free" amounts, in order to know what's actually available for use.
I, too, have Hashimoto's and anyone trying to treat me by TSH and/or antibody count will most likely kill me...........
My endocrinologist follows my TSH most closely and keeps me around 1. She also watches the others, but adjusts my meds based on TSH. If i go over 1 and still feel ok. She waits to adjust my disage. She is known to be the best in the state with her speciality being thyroid and pituitary. She is extremely thorough and stays up to date on medical changes and research.
If your TSH is increasing, it's because your thyroid (in hashimotos) is failing to produce enough of its own hormones. Therefore signaling more TSH from pituitary. Soooo your levels may be perfectly fine on T4 and T3 since the extra TSH may do the trick for a period of time to get the thyroid to better produce. As long as it is still capable of producing that is.
The only other scenario is directly related to pituitary or cancers.
So back to a TSH reading of 168.... This is abnormally high by any standard regardless of other disputes we may disagree on or tests numbers. I was simply asking what other causes I may not be thinking of or what he can expect besides additional blood tests for more thyroid cursors and possibly imagining? I have never seen a number like that in anyone I know with thyroid disease.
We've seen higher TSH numbers. An endo should run FT3, FT4 and TSH and antibody test to determine if he has Hashi's (both TPOab and TGab). In addition, if nodules are detected on palpation, a thyroid U/S would probably be ordered.
TSH can be affected by any number of factors in the thyroid/hypothalamus/pituitary axis. If yours accurately reflects FT3 and FT4 levels, you are very lucky.FT3 and FT4 are much more reliable indicators of thyroid status.
Meds with T3 in them, having been on meds for a very long period of time, pituitary issues, hypothalamus issues just to mention a few can make TSH virtually useless.
"If your TSH is increasing, it's because your thyroid (in hashimotos) is failing to produce enough of its own hormones." Correct.
"Therefore signaling more TSH from pituitary." No, the thyroid does not signal the pituitary. The pituitary checks FT3 and FT4 levels in the blood. If TSH is high (in a perfect world), it's because your pituitary is finding your serum FT3 and FT4 too low.
"Soooo your levels may be perfectly fine on T4 and T3 since the extra TSH may do the trick for a period of time to get the thyroid to better produce. " It just doesn't work that way. Your pituitary puts out TSH strictly in response to low thyroid hormone levels (once again in a perfect world...lots of other factors can affect TSH). The pituitary doesn't put out "extra" TSH.
"She also watches the others, but adjusts my meds based on TSH. If i go over 1 and still feel ok. She waits to adjust my disage." So, what you're really saying here is that your doctor treats you clinically to relieve symptoms and only uses TSH as a guide.
No need to get testy. They are just trying to educate you on how the system really works.
Being in a reference range means almost nothing really. Each individual is different and unique. However many, many people have found that in order to feel well, they have to have their FT4 in the MIDDLE of the range AND their FT3 in the UPPER 1/3 or the range or there about. Simply being on the low end of the range many if not most people will have symptoms.
TSH is for most a screening tool although most Dr's seem to use it as the be all end all to everything. MANY, MANY people have been on a roller coaster ride of hell for YEARS because their Dr's exclusively used TSH and nothing else. And they were NEVER medicated correctly. Many others have been under medicated for years because their Dr's only would medicate until the numbers got into the very bottom of the range.
Do not expect your husband to necessarily have the luck you had with simply being medicated based on TSH of about 1. You fortunately one of the lucky people that this works. Far more people are not in the same boat.
As stated earlier if on a T3 medication, many if not most people will have their TSH suppressed rendering it useless. Again many Dr's don't seem to know that this might happen and when the TSH goes to near zero the Dr's panic and reduce or eliminate medicine when the person is still in reality Hypo. Thus starting the roller coaster ride.
I would just like to add that modern research shows symptoms correlate w/ Free T3 and the T3/Reverse T3 ratio very strongly. Symptoms (fatigue, high cholesterol, heart problems, etc) do not correlate well with TSH or free T4, so while you are doing great dosing by TSH because your TSH is probably working correctly, it's actually uncommon for someone to have total symptom relief by only using that value. I think you should definitely continue to follow that if it's keeping you healthy, but just a heads up for your husband that he may not have as great of luck w/ TSH, but it's no reason to be alarmed.
Sorry - didn't read the other comments first, but I don't believ ethat high of a TSH necessarily indicates one thing or another (aside from hypothyroid). To find out the cause, additional tests have to be done. I know that's not exactly the answer you are searching, but a value like that doesn't flat out indicate cancer, say, or some other serious condition. It just means his pituitary is responding quite strongly to whatever his thyroid hormone levels are, or even possibly that there's a pituitary condition (infection, or a tumor) causing his pituitary gland to produce too much hormone for no reason related to thyroid. I've heard that up to 20% of the population is suspected to have some sort of tumor of the pituitary gland that is generally asymptomatic and is never discovered during their life. Any pressure from even a benign tumor of that gland can potentially cause altered pituitary hormones. That's reason enough to at least check a variety of other labs before beginning a treatment path that is only based on TSH.
Please, please, research your info! You are sadly mistaken on your thyroid facts and I think it's a miracle that you feel okay by treating the TSH alone. I do hope your husband researches his condition. Stopthethyroidmaddness website taught me so much. I have found that you have to be your own advocate with your health.Good luck to you both.
Rachel, Thank you for answering my question of what that high of a TSH number could mean. That's what I was looking for. Sometimes having people to bounce things off of and get answers that lead to less fear not more questions is all a person needs. I have never seen something that high and I was terrified of what it could mean. Especially considering the endocrinologist was talking about brain MRIs and Testicle sonograms. I have a brain tumor on my pituitary and I so didn't want him to go through any of that. It turns out he has Hashimotos. His ultra sound is fine.
His peroxidase was over 1000. (range under 250) and his thyroglobulin was 6.69. (I haven't seen the actual paper yet, she is mailing it to us) His TSH has since risen a little more to 193. She started him on 75 mcg and he is retesting in 4 more weeks (he's been taking it about a week now).
His vitamin D is extremely low at 8. His testosterone has risen, but still low for his age.
As I read your posts, it occurred to me that you would benefit from reading this link. It was written by a good thyroid doctor that has my highest respect for his knowledge and experience. Please overlook the typographical errors, as the paper is still being finalized; however, it has so much valuable info that I wanted you to see it.
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