Question for the Thyroid Experts Out There
swezeytba
Posts: 624 Member
In all the testing I've been doing lately my PCP requested I get my TSH checked because my right thyroid gland was slightly enlarged.
Results are back and my level is 0.52 (Normal range stated as 0.47-4.68)
Last time I had my TSH checked about a year and a half ago my level was 5.60 which was actually higher than the normal range, but appeared stable so they didn't put me on any meds.
Any ideas on what would cause my thyroid level to decrease so much in such a short time?
Should I be worried?
Results are back and my level is 0.52 (Normal range stated as 0.47-4.68)
Last time I had my TSH checked about a year and a half ago my level was 5.60 which was actually higher than the normal range, but appeared stable so they didn't put me on any meds.
Any ideas on what would cause my thyroid level to decrease so much in such a short time?
Should I be worried?
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Replies
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You may want to have them check you thyroid antibodies. I have Hashimotos, which is an autoimmune thyroid disease. Apparently, the thyroid function can swing dramatically with that.4
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I would ask. My mom almost died bc of undiagnosed thyroid issues and I suffered with thyroid symptoms for years but bc the only test they did was TsH and that was normal, i was undiagnosed.2
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While I don't consider myself an expert, based on my history of thyroid issues (thyroiditis, which damaged my thyroid and later caused hypothyroidism) and reading I've done, I think you would be wise to seek further testing including a test for thyroid antibodies as well as other tests such as Free T4, Free T3, and reverse T3 levels. It is important to know that someone can have a negative result for antibodies and still have Hashimoto's.
You may want to see an endocrinologist because it does not sound like your PCP is on top of things. More tests, and probably treatment, should have been done back when you had a 5.6 TSH. That is too high.2 -
Remember, too, that you can actually be seronegative (meaning no antibodies) and still have Hashimoto's or Graves Disease. I'd look at comorbidities, too.
And honestly, you completely flipped your diet around, right? It is remotely possible to go from horrible (optimal range is supposed to be 0.5-1.5) to optimal, but without hugely drastic food changes, supplements, other meds, I don't know how likely it is...
It is also possible that the 5 whatever was a fluke. Before that, was it high?2 -
KnitOrMiss wrote: »Remember, too, that you can actually be seronegative (meaning no antibodies) and still have Hashimoto's or Graves Disease. I'd look at comorbidities, too.
And honestly, you completely flipped your diet around, right? It is remotely possible to go from horrible (optimal range is supposed to be 0.5-1.5) to optimal, but without hugely drastic food changes, supplements, other meds, I don't know how likely it is...
It is also possible that the 5 whatever was a fluke. Before that, was it high?
Well I never had it tested prior to when my epilepsy returned but my neurologist wanted me to have it tested. It came back high and so they had me tested again 2 or 3 more times within a year or so time frame to see if there were any changes and it basically remained at that same high level so they were considering it stable.....
Me of course already dealing with the issues of my epilepsy returning wasn't really ready to consider that I might have thyroid problems to deal with too and was happy to go with their ideas on it.
And yes....Complete flipping around of the diet since December!
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I would see an endocrinologist. I think an ultrasound would be in order. The fact the right side seems enlarged would indicate it in my opinion.3
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How big is your calorie deficit? If you have underlying thyroid issues and then a steep deficit, it can kind of push your thyroid over the edge. Generally the LCHF reduction in appetite is good for overall health (and sanity), however, for someone with a sketchy thyroid it can be overly stressful. Try eating all your calories up to a reasonably small deficit and not having more than 1 or 2 drastically under days in any given week while you pursue further testing.1
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My husband had one side of his thyroid bigger than the other. They tried to do needle biopsy's on it, but were never able to get a good sample. They decided to do surgery and he had a herthal cell (spelling), that usually turns into cancer. They removed half of his thyroid and usually there is only a 1 in 5 chance that you need meds, but in his case, they somehow messed up the other side and he's on meds for life. He's on the Armour thyroid, by insistance. I've seen to many people end up with reverse t3 being on synthroid which only has t4:
In some patients, instead of properly converting T4 to T3, the body converts too much T4 to reverse T3, effectively shutting down the body. These patients often experience debilitating fatigue, and continue to get worse in spite of taking T4 thyroid hormone medication.
https://www.holtorfmed.com/treating-thyroid-conversion-disorders-with-t3/
A friend had that and went through hell with her doctor until she found another one.
Good luck.2 -
tcunbeliever wrote: »How big is your calorie deficit? If you have underlying thyroid issues and then a steep deficit, it can kind of push your thyroid over the edge. Generally the LCHF reduction in appetite is good for overall health (and sanity), however, for someone with a sketchy thyroid it can be overly stressful. Try eating all your calories up to a reasonably small deficit and not having more than 1 or 2 drastically under days in any given week while you pursue further testing.tcunbeliever wrote: »How big is your calorie deficit? If you have underlying thyroid issues and then a steep deficit, it can kind of push your thyroid over the edge. Generally the LCHF reduction in appetite is good for overall health (and sanity), however, for someone with a sketchy thyroid it can be overly stressful. Try eating all your calories up to a reasonably small deficit and not having more than 1 or 2 drastically under days in any given week while you pursue further testing.
I actually haven't been tracking my calories lately....Finally reached what I felt was a good weight and have just been trying to eat intuitively. Just basically keeping track of my carbs only to make sure that I'm below that threshold and letting everything take care of itself.
I'm maintaining pretty well so I wouldn't think I would have too much of a deficit at this point, but could have previously.1 -
My husband had one side of his thyroid bigger than the other. They tried to do needle biopsy's on it, but were never able to get a good sample. They decided to do surgery and he had a herthal cell (spelling), that usually turns into cancer. They removed half of his thyroid and usually there is only a 1 in 5 chance that you need meds, but in his case, they somehow messed up the other side and he's on meds for life. He's on the Armour thyroid, by insistance. I've seen to many people end up with reverse t3 being on synthroid which only has t4:
In some patients, instead of properly converting T4 to T3, the body converts too much T4 to reverse T3, effectively shutting down the body. These patients often experience debilitating fatigue, and continue to get worse in spite of taking T4 thyroid hormone medication.
https://www.holtorfmed.com/treating-thyroid-conversion-disorders-with-t3/
A friend had that and went through hell with her doctor until she found another one.
Good luck.
Yikes.....I'm starting to worry even more....Sounds like there's all kinds of horrible things that could go wrong with your thyroid.....1 -
I had my thyroid removed because of thyroid cancer. Was yours swollen or did it have nodules? What timeframe did you go from 5.6 to .52? That was with no thyroid replacement?1
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Hi @food_lover16 .
Sorry...been away from the forum for a few days. She said there weren't any nodules that she could feel, just swollen. Time frame was from 10/2015 to 04/2017 so about 18 months or so....
No thyroid replacement.1 -
Hi @food_lover16 .
Sorry...been away from the forum for a few days. She said there weren't any nodules that she could feel, just swollen. Time frame was from 10/2015 to 04/2017 so about 18 months or so....
No thyroid replacement.
you should see an endocrinologist for this, your dr wouldn't likely be able to feel nodules they are typically very small and many would cause an enlarged thyroid. I have and enlarge thyroid which they ordered an ultrasound of that showed 11 nodules. I don't know why your levels changed that much though I know if you are sick at the time you are tested that can elevate the numbers. mine went from 2.5 to .85 but I am taking levothyroxine to try to keep the nodules from getting any larger. its also possible he lab messed up, I had that recently with my bg numbers, totally freaked me out but I feel fine so all is good. I would recommend a specialist at least to monitor this going forward and see if something is going on.1 -
I recently had a thyroid ultrasound done. My thyroid was felt to be enlarged at my appointment, but at the ultrasound there were no nodules or masses, so it became a wait and see situation.
However, I'm a treated thyroid patient. Who recently switched medications. And my Endo opted not to test my labs at my appointment where he switched meds... I wish he had. I was feeling bad again on my old doses, and it's just miserable. Right now, I'm on a roller coaster. One day great, the next terrible. Hoping this levels out somehow... Labs soon...
But I agree, I'd get it checked out. That big of a shift needs to be cleared up as an error or researched further just to rule out major issues. There are nearly a dozen reasons for enlarged thyroid in general, so that in and of itself isn't a huge concern - just one of those "let's check and see things." I'd say about the same on the TSH shift, "well, that's strange, let's do more testing and see if we can find why." Together, it's, "well those things happening together tell me something's going on in there, let's test and figure out what!"1 -
Well I never had it tested prior to when my epilepsy returned but my neurologist wanted me to have it tested. It came back high and so they had me tested again 2 or 3 more times within a year or so time frame to see if there were any changes and it basically remained at that same high level so they were considering it stable.....
)
I also suggest a trip to an endocrinologist. That is a large shift without medicine adjustments to blame for it and given that the neurologist could tell it was swollen, that is another reason to get it checked by the endo.
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I did send an e-mail to my PCP asking if we should be concerned in the big shift in levels of the TSH. Haven't heard back yet. Having a lot of testing done across the board right now, so why not add one more specialist huh?1
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Bump as I am keeping an eye on my thyroid too.1
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My PCP finally e-mailed me back saying that they weren't extremely concerned about the fluctuation in my thyroid hormone, but did want to keep any eye on it which is why they will be having me retested fairly soon. Hmmmm?1
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@swezeytba - If I had to guess, they probably think it was a testing error but for some reason that didn't translate. If you don't feel awful and are running fairly steady, I would wait to be retested, but no more than 4-6 weeks. If you feel bad, I would request a retest sooner, and ask if there were any lab errors possible. When they retest, I would tell them that if you're still getting crazy results, you want the X, Y, Z, and etc. tests run immediately. To me, that big of a shift is concerning, but I know you've changed pretty much everything you eat/do, so it's possible that the chaos is just showing up in that number.
You might try emailing/posting a thyroid person, like Izabella Wentz or Maria Emmerich, or even a functional person online like Dr. Hyman or Dr. Chris Masterjohn, PhD, etc. just to see if those numbers, without only the change to keto, would make a result like that less concerning. None of them will give specific medical advice, but they might be able to tell you that they would either retest immediately or be comfortable waiting for a retest, etc. Some of them even do online consultations (for a fee), if that's a path you're interested in.2
