Other Tests? What am I missing??

[Moondog1117]

I'm new here and  am having difficulty navigating and using this site.  Please forgive me if I'm posting in the wrong area.

I was diagnosed a year ago (June 2012) with Hashimoto. At that time my TSH level was 3.9 (reference range .40 - 4.) I presented with practically every classic symptom of hypothyroidism. NO energy (I thought I may have mono), Brain Fog (so severe I thought I could have early onset Alzheimers), weight gain, among others. Low Vit D (19) and Low B12 (411).

Placed on 10,000 IU daily Vit D, 2000 B12 daily and 25 mcg levothyroxine daily.

Blood work 2 months later showed TSH at 2.2, T4Free 1.23 Reference range 0.80-1.0) , and T3 Free 3.0 (reference range 2.30-4.20)  Symptoms were beginning to alleviate.  Went to 50 mcg levo daily. Tested 2 months later and TSH was at 2.4. (Vitamin D went from 19 to 41, while Vitamin B12 went from 411 to 1194 (reference range 200-1100)

Went to 75 mcg levo daily at this time (Oct 2012)  for 2 weeks, then increased to 88 daily. Experienced heart palpitations daily until late December.  Doctor decreased Levo to 75 mcg. Heart palps stopped immediately, but difficulty breathing took over!  

Stopped taking Levo completely (at my request) in February 2013.  Had initial visit with Endo. (nightmare experience, will spare you the details - didn't go back!)

Am still not taking Levo or any meds. Blood work in late March 2013 showed Thyroid Autoantibodies /Thyroglobulin Antibodies 1.97 (reference range > 1.10 Positive), Thyroid Peroxidase Antibodies 678 (reference range >250 Positive) T4 Free 1.07 and T3 Free 2.8, TSH 3.6

Recent blood work, June 2013 Vitamin D 46, B12 >2000, and TSH 2.9. Still not taking Levo.

I continue having Hypo symptoms mainly, and sometimes hyper symptoms (in the same day!) but no heart palps or breathing issues. (Thankfully)

Sorry for the long medical history.  I'm petrified to resume Levo again, even at a low dose of 12.5 mcg, but desperately want to feel 'normal' again.

Are there other tests I should request?   No one can predict when my thyroid will actually die, and meanwhile, it seems to work (too well at times) and then slow to a miserable rate. How does one know what the correct TSH level should be??  This is a roller coaster ride and it's certainly no fun.

Thanks in advance.

[goolarra]

Is your doctor testing only TSH?  Do you have the results of your free T3 and free T4 to go along with the TSH you posted?  If so, please include the reference range.

Although the active ingredients in the different brand names of thyroid meds is the same, each company uses different fillers (inactive ingredients), and the fillers can make one brand or the other more effective for an individual.  

[dragonfly83]

Sorry and I was wondering what might cause TSH to keep going up but then drop down again on the same dose. (1.64 to 1.03 to 2.3)

[dragonfly83]

I had a total thyroidectomy in 6/08 due to uncontrolled Graves. I have been pretty stable on a dose of Levoxyl at 125 mcg daily plus 3 half pills (62.5 mcg) weekly since that time and my TSH is all that has been primarily monitored but I feel good when it is .8-.3 range.
I had my daughter in 7/12 and my endo increased my dose to 250 mcg daily and I went hyper with TSH around 0.01 so the dose was decreased back to my original 125 + 3 half pills and I was back to feeling normal  and around .24 TSH but then had to change endo because I moved out of state. I was switched to synthroid and he thought my TSH was too high so dropped my dose to 125mcg/daily. 6 weeks later my TSH was at 1.88 and he said "see you in 6 months". January came and my endo thought I had stopped taking my meds because my TSH was 22. He said it must be a lab error and come back in 2 months. Came back in march and my TSH was 30. He said there was no reason for this but agreed to switch me back to Levoxyl since I'd never had an issue on that brand. So between april 1 and may 14 on Levoxyl at 125 mcg/daily, my TSH increased to 20. I moved back to Maine around that time and my old endo increased my dose to 125 mcg/daily plus 4 half pills/weekly. June TSH was 1.64, July TSH was 1.03 and august TSH was 2.3.
I just had more bloodwork today and have an appt with my endo next week. I'm just trying to figure out what I should advocate for myself. I have had no energy/motivation for a while now but it's hard to say when it started. I have gained about 5-8 lbs in the last couple months despite healthy eating and daily exercise. I have also been trying to get pregnant since June with no luck and I'm wondering if my thyroid could be part of it? I got pregnant twice on the first try (sadly, one miscarriage) the last time we were TTC so I feel like it shouldn't be taking this long. Oh and I'm 31.

[gimel]

Sent PM with info.  Just click on your name and then go to messages.  

[Moondog1117]

Yes, I would gladly see someone who can actually help me.  Thank you!!!  

[gimel]

I only have one member recommended doctor in that area.  The doctor is located near Cincy.  Is that close enough to be of interest?

[Moondog1117]

Thanks!  I'm in southwest Ohio. About an hour north of Cincy. Not far from Dayton.  

Appreciate your help!

[gimel]

Please notice that I said good thyroid doctor, not Endo.  They are not always the same.  Endos frequently specialize in diabetes, not thyroid.  Also, many of them have the "Immaculate TSH Belief" and only want to use TSH to diagnose and treat a hypo patient.  That just doesn't work.  Many of them also rely exclusively on "Reference Range Endocrinology" and will tell you that a thyroid test result that falls anywhere within the range is adequate.  That is also wrong.  The ranges are far too broad to be functional for many patients.  Also, patients are different in their need for thyroid hormone.  

So, if you will give us your location, perhaps a member can recommend a good thyroid doctor for you.  

[Moondog1117]

Thanks for your response.

I went off the medication in February due to experiencing continual breathing issues.  I just tried to start the Levo again yesterday, at 12.5 mcg, and again experienced breathing difficulty, although to a much lesser degree.  This morning, I didn't take the meds at all, and here I am with breathing issues.

I appreciate your suggestion of having my ferritin level checked and a thyroid ultrasound.  Of course those things haven't been checked at all!

Lastly, it is extremely difficult, as you pointed out, to find a GOOD endo who can help.  (perhaps especially in my location)  

[gimel]

First thing to understand is that TSH is a pituitary hormone that causes no symptoms.  Unfortunately doctors rely on TSH  almost exclusively because it is supposed to accurately reflect your thyroid status, but in reality it cannot be shown to correlate well with either of the biologically active thyroid hormones, Free T3 or Free T4, much less correlate with symptoms, which are the most important consideration.  Free T3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

In addition, TSH is frequently suppressed when taking adequate dosages of thyroid meds.  That does not mean you are hyper, unless you do have hyper symptoms due to excessive levels of Free T3 and Free T4.

Why did you decide to stop taking your thyroid med in Feb.? Your subsequent blood tests in late March reflects FT3 and FT4 levels that are too low, consistent with having hypo symptoms. So you need to get started on med again and raise your Free T4 level to around the middle of its range and Free T3 into the upper third of its range, or as necessary to relieve hypo symptoms.

There are a couple of impediments that I can think of.  One is the possibility of having nodules on your thyroid gland due to the Hashi's.  Such nodules can leak thyroid hormone faster than normal and cause cycles of being hyper and then back to hypo.  You can find out about that possibility with an ultrasound of your thyroid gland.  

The next impediment is that many hypo patients do not adequately convert T4 med to T3.  So you always need to test for both Free T3 and Free T4.  If the T4 med is unable to raise your Free T3 enough to relieve symptoms,  then you may have to add a source of T3 to your meds.  

The next thing is that I see no evidence of testing for ferritin, which is very important for metabolism of thyroid hormone.  Low ferritin can also cause some symptoms that mimic hypothyroidism..  Low ferritn can also cause adverse reactions when taking thyroid meds.  So it is best to test for ferritin and make sure it is not at bottom of its range or below when starting thyroid meds.  In addition you need to increase your Vitamin d level and reduce your B12 level.  No need for it to be that high.

The biggest impediment for all of us usually becomes finding a good thyroid doctor .  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  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

So you need to discuss clinical treatment with your doctor and find out if he is willing to treat as described above.  If not, then you will need to find a good thyroid doctor that will do so.  If that turns out to be the case, then please give us your location and maybe a member can recommend a good thyroid doctor based on personal experience.