More tired on Tirosint

[lisamarieluna]

Hi, there I was reading the posts on Tirosint and am wondering if anyone else had a similar experience taking thyroid meds for the first time? I was recently diagnosed with hypothyroidism although I 've know my TSH has been slightly high for years and I've been able to manage it with herbs, acupuncture and other supplements. Recently my TSH went up to 26.6 and I was feeling really tired, had insomnia and felt very tired/wired and wasn't handling any stress very well. I also had brittle nails, extremely dry eyes and muscle aches, some hair loss.Anyway, I saw a Dr. last week who has written a few books on Thyroid. He prescribed Tirosent, 25mcg to start for a week, incrementally upping the dosage for 3 weeks and then adding in Cytomel. I started the Tirosint 3 days ago and followed all directions correctly but feel completely flattened and wiped out by it. I have ZERO energy and feel WAY more tired than I did before starting it. The doctor also gave me Cortef ( a steroid for the adrenals) that he said  I could take if the Tirosint made me more tired/wired. I am really hesitant to do this as I don't want to take any steroids plus my adrenal saliva test measuring 4 cortisol levels was fine. I tried Armour Thyroid 6 years ago and had the same problem where my fatigue got 10x worse and then got better once I was off it. I am not sure if I should stick out this debilitating fatigue and ask for a different dosage or medication? I already emailed my doctor and am waiting to hear back. I am not someone who likes to take medications at all but decided to try the Thyroid meds because nothing else I was doing was working very well. I never did try bovine thyroid supplements. Has anyone tried them?

My most recent labs: 3/16/12 from dried blood spot ( it's what this doctor prefers, using ZRT labs, he says TSH starts to deteriorate in liquid blood)
TSH 26.6
TPO normal range 16
Free T4 .9 normal range
Free T3 2.9 normal range

My labs from just two weeks earlier using Labcorp and liquid blood samples:
3/1/12
TSH 20.96
T4: low at 4.3
Reveres T3 normal: 24.8
T3: 94 normal
Free T3: normal at 2.5
Free T4 : low at .81.

[toni2251]

Thank you both. This info really helps. It's tough though it seems like every increase causes emotional instability. It's exhausting. I wish I could start higher to get over this stuff, but I know you both are correct. Slow and steady. Thanks for the info.

[goolarra]

I agree with gimel.  My doctor started me out on 88 mcg even though I am one of those "older" patients, had been hypo for a couple of years (in retrospect) and have a heart arrhythmia.

My expereince was that my hypo symptoms did go away relatively fast, BUT I could not tolerate the 88 mcg since it made my arrhythmia so much worse.  I ended up having to back down way back to 25 mcg.

All in all, I had almost four miserable months of being overmedicated, and ultimately, I had to go back and do it the "right" way...start out low and work up very gradually.  Believe me, if it had been an option, I'd have taken every one of my hypo symptoms back in exchange for the side effects of too much, too fast.

[gimel]

The recommended starting dose of T4 meds is like 25-50 mcg, with the lower dose if the patient is older.  I think the cautious approach is to prevent any possible hyper reaction from starting on a high dose all at once.  Believe me, hyper is far worse than hypo, so best to be careful.  Also some patients don't tolerate the fillers used in T4 meds, so again it is best to be cautious.  If a problem occurs, then with the lower dose it won't be as bad, and the patient can switch to a different brand.

[toni2251]

Hi I have a question about your comment. You mentioned about when starting on low doses of thyroid meds we have less desireable results. Then why should we start so low? I know there is an adjustment process to finding the right dosage, however I kind of wish that I could just take a larger dose and get over this horrible feeling quicker. I know my body is worst because I started on such a low dose. I need more thyroid medicine but I don't want to inch up forever causing consistent set backs. Does this make sense? Can you start with more? I'm currently on 88 mcg of levoxyl and trying to cut back on my cytomel which is about 15-20 mcg. Sorry to hijack the post, I'm just curious why we shouldn't start higher. Not to high but definately not 25mcg. Let me know what you think. Thanks!

[gimel]

Many hypo patients starting out on thyroid meds find that the initial result is less than desired, as the body responds by reducing the amount of TSH and thus the amount of natural thyroid hormone produced by the thyroid gland.  I think that this can easily occur when starting on small doses of meds.   If you had been tested again after 6 weeks, for both Free T3 and Free T4, I would expect that your blood levels of thyroid hormone might even show a reduced level of Free T3, since it has to be converted from T4.  Since Free T3 is the biologically active thyroid hormone that largely regulates metabolism and many other body functions, that could relate to your symptoms.

Endocrinologists have problems treating hypo patients adequately mainly because of their "Immaculate TSH Belief" and their use of "reference range Endocrinology", rather than treating clinically.   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.  Symptom relief should be all important, not just test results, and especially not just TSH results.  Believe me there are much more data available from scientific research than is being used by most doctors currently, since they aren't willing to take the time to treat clinically.

You can get some good insight into all this from this link written by a good thyroid doctor.  If you truly are hypothyroid, and are having hypo symptoms, then you will not find any effective substitute for thyroid meds, properly administered.

http://hormonerestoration.com/Thyroid.html

[mimisrockermsn]

Mildly hypothyroid, I tried Tirosint first at 13mcg, then 25. By 6th week of the second trial, accumulated levels began causing fogginess, sleep dysfunction, slowed thinking, and leg pain. Cholesterol and triglyceride levels, which had been improving, suddenly worsened. Only TSH improved, and only by one point. I quit Tirosint, didn't "crash" as doctor predicted, and am regaining normal sleep, brain function and leg pain gone. Will try Ayurveda and other, more body-friendly non-prescriptions before returning to meds like Tirosint.  Honest endocrinologists admit that thyroid treatment is at best tricky, requiring much experimentation. So, until we better understand what we're fooling with, we should adopt effective alternatives before prescribing these heavy meds, and gather much more data and research. Thanks everyone for reporting.

[flyingfool]

Definitely keep us posted and your next lab results as well.

What is the "adrenal glandular" and how much are you taking?

[goolarra]

So glad to hear that you're getting treatment and feeling better.  Let us know how it continues to go...

[lisamarieluna]

Thank you so much for your comments and help. My doctor put me on a small dose of T3 only and already  I feel much better. I am also taking an adrenal glandular instead of the Cortef and it all seems to be working a million times better than the T4. Thanks again!

[goolarra]

T4 is the "storage" form of the thyroid hormones, and it's only made in the thyroid.  However, T4 cannot be used by cells until it is first converted into T3, the "active" form of the thyroid hormones.  Some T3 is made by the thyroid, but, for the most part, T4 is converted to T3.  This happens mostly in the liver and kidneys.

Our bodies convert T4 into both T3 and RT3.  RT3 is a mirror image of T3, so it can dock upside-down at T3 receptors in cells.  The problem is that RT3 is inert, but it blocks T3 from getting in.  So, the result is that even with good FT3 and FT4 levels, you are still hypo at the cellular level.  Some amount of RT3 is normal, but there should be less RT3 than FT3.  Your ratio was 1.0, which means that the RT3 and FT3 are just about equal.  You really should have closer to twice as much FT3 as RT3.

I find it interesting that your doctor ran the RT3 test, but is now ignoring it in favor of giving you a steroid for an undemonstrated adrenal problem.

I'm going to PM you a link to what I consider a good introduction to RT3 dominance.

I really wouldn't try taking T3 alone unless under a doctor's supervision.  T3 therapy for RT3 dominance can cause too rapid release of the RT3, which can cause problems.  I'd want to do that only with someone who knows what they're doing.

[lisamarieluna]

I just did some reading on the FT3 and RT3 ratio but can't find anything succint on what the recommended plan is for it? One site says building up iron and folic acid as well as taking silymarin for the liver. No one mentions which thyroid meds to try. Whatever I am able to find out, I will discuss with my MD, just want to have an understanding and know for myself.

[lisamarieluna]

Thank you for the information.  I am new at all this and even though my doctor has written a couple of books on thyroid, it seems he has a set way of doing things. Frustrating because I am paying for all the expensive visits out of pocket. I stopped the Tirosint yesterday and felt much better, still tired but not like death warmed over. Not sure what to do next, still waiting to hear back from my doctor. Goolarra, can you explain the reverse T3 dominance and FT3 RT3 ratio? Thank you. Wondering if I might do better on T3 only as I had a similar reaction to Armour 6 years ago where my fatigue was 10 x worse. Maybe my body just doesn't like the T4? My doctor thought I could try the Cortef ( adrenal steroid) with the T4 initially, but as  I mentioned before, my adrenals looked fine upon testing and  I really don't want to take a steroid. I have a generic Cytomel  I could try on its own. I have read that some folks do better on just T3...

[ChitChatNine]

Yikes .. a TSH of 26.6 ... that would be very hard for anyone to go to work I would think.  Please keep us posted .. super info posted above.

[goolarra]

Your labs look very hypo.  FT4 is at the very bottom of the range on 3/16 and below range on 3/1.  FT4 often has to be midrange before hypo symptoms are alleviated.

FT3 is also too low in the range on both tests.  Target level for FT3 for symptom relief is upper half to upper third of the range.

What really jumps out at me is your RT3 test.  Yes, it's in range, but what's really important with regards to RT3 is the ratio of FT3 to RT3, which is computed in your case as FT3 / RT3 X 10.

2.5 / 24.8 X 10 = 1.0.

Range for this ratio is not hard and fixed, but a good starting point is 1.0-2.0, preferably toward the upper end of the range (2.0).  So, you can see that your ratio is quite low, indicating RT3 dominance.

In addition, if you have RT3 dominance, increasing serum T4 (by taking T4 meds)) only exacerbates it, since that encourages the production of even more RT3.  That might be why you're having such a bad reaction to the Tirosint.

Do you understand conversion and the difference between RT3 and T3?  If not, I'll be glad to explain, but I don't want to tell you what you already know.

[lisamarieluna]

Hi,
Thanks, I know there might be an adjustment period, but should I feel this bad? I am so flattened by the medication I can't function. How long might this last? I have to work.

Here are my reference ranges:

test on 3/16/12:
TSH 26.6 (.5-.3.0)
Free T4 (0.7-2.5)
Free T3 2.9 (2.5-6.5)
TPO  16 (0-150) (70-150 borderline)
no TAA done this year (see below for 4/2010 results of TAA)

the earlier test on 3/1/12:
TSH 20.96 ( 0.450-4.500)
T4  4.3 (4.5-12.0)
Free Thyroxine Index 1.3  (1.2-4.9)
Reverse T3 24.8 (13.5-34.2)
Free T4 .81 ( 0.82-1.77)
T3 94 (71-180)
Free T 3 (2.5 2.0-4.4)

The last TPO and TAA were done in April 2010:
Thyroid Peroxidase (TPO) Ab 6 ( 0-34)
Antithyroglobulin Ab <20   (0-40)

[goolarra]

Your reference ranges didn't print on the labs above, nor did your TPOab result. Would you please repost results with ranges.  A good way to do that is to post test, result, and range in parentheses, e.g.:

TSH 26.6 (0.3-3.0)

It's not unusual to fel a little worse before feeling better after starting meds.