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Thyroid Disorders Community
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1691275 tn?1322327507

Pre-/Post Thyroid Med hell

I was being (falsely, it turns out) treated for long-term Lyme disease last year, and in amongst that my doctor decided that I was hypothyroid and put me on 90mg of full-spectrum dessicated thyroid. My readings at the time were:
T4 Free - 0.6 (low)
T3 Total - 92
TSH - 1.10

Afterward I ended up seeing a second doctor, and he looked at the report above and said "you're not hypo." (Does anyone have their own opinions about that?) He retested my levels to see what effect the thyroid meds were having:
T4 Free - 1.06
T3 Free - 4.1
TSH - 0.4 (low)

It basically looks like the thyroid meds switched me from low-T4 to low-TSH. So he recommended I stop taking them.

Which I've done, a couple weeks ago, and in the meantime I've become very dizzy, depressed, and gained 10 pounds in what I can only assume is retained water. I also have an eerily low body temperature when I wake up in the morning, like around 94F.

So my question is: has anyone else stopped taking 90mg of desiccated and if so did it also cause awful feelings and rapid weight gain? I'd like to think these are transient symptoms of stopping the medication and they'll go away over time, but part of me is starting to suspect my first doctor was right all along....
10 Responses
Avatar universal
It is pretty obvious that you had a low thyroid issue prior to the medication which is a T4/T3 hormone replacement medication, then you were taken off the medication by a different MD? Most feel better with thyroid levels at Free T4 50% of range, and Free T3 at 66% of range, also TSH supressed below 1.0  To begin with proir to medication Your Free T4 was 0% or below range, your free T3 was 0.1%  So by these percentages you are Hypothyroid, regardless of TSH being in range, He put you on a dessicated T3/T4 medication and you went to 28.80% Free T4 and 87.5% of Free T3, which iis a shade overmedicated with Free T3 and under on Free T4, so then another clown took you off medication all together? Now you are having Hypothyroid symptoms? What kind of MD's are you being treated by? First of all, the first MD should have started out at half the dosage he did, in order to ease you up with thyroid hormone medication. The second MD was really wacko, since he based his opinion that your levels were too high, did he not consider you were on medication that caused the high levels, you just needed a reduction in medication, not to be yanked off all together. Has either of these MD's tested for autoimmune disease such as Hashimoto's disease? or Graves. You need to get back on some sort of thyroid medication and have the following antibody tests done  TPO, and Tgab for Hashimoto's and TPI for Graves disease, then he should get you back on 1 grain or 60mg of dessicated thyroid,(A T4/T3 med) NP, Armour etc Then retest in 6 weeks and work from their to reduce and eliminate symptoms
Best Regards FTB4
Avatar universal
We would need the ranges provided for each lab level provided with your results in order to respond to your questions. ranges vary from lab to lab Thank You  FTB4
1691275 tn?1322327507
Oh right, sorry.

Pre-medication:
T4 Free - 0.6 (0.8-1.7)
T3 Total - 92 (80-200)
TSH - 1.10 (0.45-4.50)

Post-medication:
T4 Free - 1.06 (0.8-1.7)
T3 Free - 4.1 (2.0-4.4)
TSH - 0.4 (0.45-4.50)

Thanks for looking, and I hope that clears things up!
Avatar universal
I agree with FTB4.  You need a good thyroid doctor.  By that I mean one that will treat you clinically, for symptoms, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.  

You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf

1691275 tn?1322327507
Thank you so much! Yes, that's what I suspect as well - I think I was *slightly* over-medicated (at 90mg or 1.5 grains) but I certainly shouldn't have been pulled all the way off. You asked what sort of MDs I've been seeing, so: the first was an ND, the second an internist. Neither of them was an endocrinologist.

So yes, I'm going to bring this advice to a NEW thyroid doctor and see about 1 grain (60mg) of thyroid and retesting in six weeks. Now if only I can find a good thyroid-savvy doctor in my area...

Thanks again!
Avatar universal
You can interview the niurse when you call MD's just ask if they treat thyroid by symptoms and Free T3 or does the Doc more or less follow TSH, if they say TSH, run away. lol  Best Regards FTB4
1691275 tn?1322327507
Also good advice. And hey, while I've got your attention: I got tested soon after dropping the med when it was probably about half-active in my body, forgot about that, and indeed my T3 was at about 66% - but my T4 was still way low (about 20% of the range at that point). So it seems like the T4 level is my real problem, was the original problem, and even with a high dose of dessicated thyroid I had an elevated T3 and suppressed TSH levels but still a dragging T4. Is there another medicine that targets that specific hormone, or is it not as big a deal?
Avatar universal
First of all I made an error above, the test for Graves is TSI, not TPI,
I need to know how long you were off medication when you had your last lab, and so you understand your test results, I have to give you the whole story, Your thyroid produces and secretes the T4 hormone, part of it is lost to protein, what is left is Free T4, this free T4 is converted mostly by the liver into T3, then again some is lost to protein, the remainder of that is Free T3, so Free T4 is a storage like hormone that builds up a little, the Free T3 is used and absorbed by your cells and body right away. (if all production stopped, Free T3 would be exhasted pretty quick, but the Free T4 would last longer.) When your T3 is low, the Pituitary Gland located in the brain, senses this low level and sends its own hormone Thyroid Stimulating Hormone (TSH) to bump or stimulate the thyroid into producing and secreting more T4, so when the TSH is high, the Free T3 is low, and when the Free T3 is high the TSH is low. Many MD's just prescribe medication based on TSH alone, which does help the patient, number one, most of the TSH ranges are outdated and should be 0.2-2.0, the older ones are still 0.5-5.0 or .04-4.5, these ranges are obsolete, So medication should be based on the patients symptoms and Free T3/Free T4, To answer your question regarding your Free T4 being at 28.8% at the time of your last labs, if you were unmedicated for a long period of time, then it would not take anytime at all to get your Free T3 up, because you were taking a combo T3/T4 medication, but even so, you would have to give your Free T4 a chance to catch up, since it takes a little longer for storage, or if you want a cache.
In order to determine a range percentage, you take the larger number of range, deduct the lower number of range, write down the result, Then take your level and deduct the lower range number, divide by the number you wrote down then multiply the answer by 100. Do this with Free T3, then repeat with your Free T4, This is how to figure percentage in range, and also this will tell you if you have a conversion issue, this happens when your Free T4 is higher than your Free T3, when you compare the percentages with each other. Feel free to ask if you have any more questions. Good Luck  FTB4
Avatar universal
Another typo "Drat"

"medication based on TSH alone, which does help the patient,"
the above line should read: prescribe medication based on TSH alone does "not" help the patient.  Sorry about that, a statement around here like that will get me lynched lol
1691275 tn?1322327507
Update: thanks again, I haven't forgotten this helpful post, I'm just waiting for the medication to level-off and then I'm going to get re-tested in about two or three weeks.
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