Hypothyroid post-radiation

[ballents]

Hey everyone/anyone,

First, I just want to say thanks to all of you active and knowledgable posters on this board. It's really amazing to be able to get so much useful information and I appreciate those of you who generously spend their time helping people out with their thyroid problems. I've seen so many people get useful info that I thought I'd give it a try. Here's my situation (sorry for all of the detail but please bear with me):

I am a 27 year old man and had radiation done on my neck (Hodgkins Lymphoma) in the summer of 2011. About a year later, I noticed that I was starting to gain weight. I was around 15-20 pounds heavier than my pre-radiation weight (almost 30 pounds heavier than post-radiation weight). I didn't really mind the weight gain so I just ignored it. Then in the fall of 2013 my hair started falling out pretty rapidly, which was enough to finally get my to look the potential for thyroid problems, which I had been warned about before the radiation. Other potential symptoms included: fatigue, muscle weakness, brain fog, constant stomach pain, bags under eyes, low body temp.

I had been drinking a lot of alcohol and dealing with stress in the fall, so I spent the winter taking really good care of myself and my TSH went way up and then down, T4 got a bit better, and the hair loss slowed. Then I went to an endocrinologist that put me on tirosint. I started on 25mcg and immediately felt better. Went up to 50 and I started feeling jittery and my hair started falling out really fast again so I went back to 25. After two months of tirosint, my TSH had gone up and my T4 went down. So I stopped taking tirosint and refocused on a healthy lifestyle. I felt great for a few weeks but then sort of crashed and I feel as bad as ever (can't really exercise or focus and hair loss hasn't really stopped since I went to 50mcg of tirosint). Anyway, here are my labs:

12/19/13 1/24/14 3/4/14 3/13/14 5/12/14 Ref.
TSH 4.29          9.95         5.51         3.82         5.96       ~.4 - 4.2
T4                  6         5.9         6.7         5.2       ~ 4.5 - 12
T3                          97                 76 - 181
T3U                 29.5                 34         25 - 37

Other potentially relevant info: my white and red blood cell counts are lower than normal range and so are my platelets.

Thanks a lot if you read all of that and I'd really appreciate any input anyone might have.

[ballents]

Hey,

I just want to update you and see if maybe you can help me again. I had another set of labs done after taking 50mcg of tirosint every day for almost 5 weeks. Just to save you from having to read the whole thread, here is the history of my tests:

1/24/14

TSH: 9.95     range (.4 - 4.2)
T4:    6.0      range (4.5 - 12)

3/13/14    
TSH: 3.82      range (.4 - 4.2)
T4:    6.7       range (4.5 - 12)
T3:    97        range (76 - 181)

*After my 3/13/14 tests I started taking tirosint

5/12/14
TSH: 5.96       range (.4 - 4.2)
T4:   5.2          range (4.5 - 12)

(After these labs I stopped taking tirosint and a few weeks later started feeling terrible, so I went on 50mcg tirosint)

7/31 (after 5 weeks on 50mcg of tirosint)
TSH: 1.73       range (.4 - 4.5)
T4 Free: 1.5    range (0.8 - 1.8)
T3 total: 75     range (76 - 181)
T3 Free: 3.2    range (2.3 - 4.2)
Iodine: 45       range (52 - 109)

I am physically feeling a lot better since going back on tirosint but am kind of freaking out because my hair loss does not seem to be getting any better. I can't decide whether to keep going on tirosint and hope that my body adjusts or to stop. I have lost probably 1/3 - 1/2 of my hair over the last 9 months and am starting to freak out.

A few questions:

Could my low iodine be the case of my thyroid problems? Seems unlikely because I'm pretty confident that the radiation treatment damaged my thyroid

Also, why is my total T3 below range but my Free T3 solidly in the middle?

Also, I only have 50mcg doses of tirosint, but I worry that the dose is too high. Could I just take a 50mcg dose every other day, or should I not be changing my dose so frequently?

Sorry for all of the questions. Any help would be really really appreciated. Starting to feel a bit crazy.

[Barb135]

Well, it's always possible that the dosage is too high, but we have to give it chance to work.  It's always best to increase by the smallest increment possible and sometimes, the only way to do that is by alternating.

Good luck and keep us posted.

[ballents]

Thanks a lot for the info! I'll definitely try alternating dosages. That seems like a good idea. Glad to know that worsening symptoms may just be part of the adjustment rather than evidence that the dose is too high.

[Barb135]

Okay, now we're on the same page.

I can't really say why your labs got worse after taking the Tirosint, since we'd expect them to get better, unless, for some reason, your thyroid function is still declining.  The radiation, apparently, didn't completely destroy your thyroid all at once, but it may still be "dying" off as time goes on, which would cause your levels to continue to decrease.

When we don't have adequate thyroid hormones, the adrenal glands kick in and try to take up slack. It's not unusual, when changing dosages or medications for symptoms to worsen or for news ones to appear while the body adjusts to having the right hormones again.  Sometimes we just have to ride it out, until our body becomes adjusted; sometimes we have to increase more slowly by splitting pills, alternating doses, etc.  In the case of Tirosint, where you can't split them, you can alternate.  Instead of taking 50 mcg daily, you might try alternating 50 mcg with 25 mcg i.e. 50 mcg one day, 25 mcg the next, then 50 again and so on... this will give you an average of 37.5 mcg/day, which is an increase of only 12.5 mcg, rather than a full 25 mcg.  I've done this several times with different dosages and it works quite well, because we get an increase, but it's not so big.  Discuss this with your doctor.

Once you get back on the medication and get hormones back into your system, you should start feeling better, regardless of what your labs do.  While we'd like to have labs within normal ranges, the important thing is how we feel.

Yes, those are the antibody tests I was referring to and after I asked about them, it dawned on me that it really doesn't matter, because your thyroid will have been, mostly, destroyed by the radiation, so there's little for antibodies to destroy, even if you have them, which you don't.  

[ballents]

Thanks again for the reply Barb. I'm also glad to get some confirmation that I should be feeling bad because I definitely do. After 2 months, I stopped taking Tirosint (largely because my labs got worse even though I felt better). I'm still off Tirosint a month later and I felt fine for a few weeks but over the last week I have started feeling a lot worse. Pretty much the same that I felt before taking Tirosint.

Sorry that my post has been confusing but I guess I have a few main questions:

1. Why did my labs get worse after taking tirosint for 2 months?
2. If 25 mcg felt good but did not improve my labs and 50mcg made me feel jittery and made my hair loss worse, then what am I supposed to do? It seems like my body can't handle the amount of tirosint that I need to improve my labs.
3. How can I feel better and make my hair stop falling out? (Don't really expect an answer for this one.)

I did have some antibody tests done. Hopefully these are the ones that you're talking about. Here are the results

Thyroid Peroxidase:     <10       range (<35 IU/mL)
Thyroglobulin:              <20       range (<20 IU/mL)

[Barb135]

You said you stopped the Tirosint after 2 months; are you currently on it, or off?  

As you can see, your TSH has increased since March and your T4 has decreased from 29% of its range, which was way too low to an even lower 9% of its range.  If Total T4 is that low, we would expect Free T4 to be equally low.  I can't say a whole lot about the T3, since there wasn't one done in May to compare it with, but the one in March was only at 20% of its range, so, again, I'd expect Free T3 to be equally low.  I can only imagine how you must feel with levels like that, when most of us find that Free T4 has to be approximately mid range and Free T3 has to be in the upper half to upper third of its range.

There are 2 antibody tests that need to be done to diagnose Hashimoto's.  Those are TPOab and TgAb.  Did you have them both?  Can you post the actual results with ranges please?

[ballents]

Thanks for your comment. Also, the tests above are for total T3 and T4, not Free T3 and T4. I have not been tested for b12 either. However, I emailed my Endo and plan to get bloodwork done next week that will test for Free T3, Free T4 and b12.

Lastly, I have had my thyroid antibodies tested and they were within range.

[ballents]

Sorry for the delay! Chart number 2:

1/24/14

TSH: 9.95     range (.4 - 4.2)
T4:    6.0      range (4.5 - 12)

3/13/14    
TSH: 3.82      range (.4 - 4.2)
T4:    6.7       range (4.5 - 12)
T3:    97        range (76 - 181)

*After my 3/13/14 tests I started taking tirosint

5/12/14
TSH: 5.96     range (.4 - 4.2)
T4:   5.2        range (4.5 - 12)

[Barb135]

Charts often don't post the way we want them to, so not to worry.  Unfortunately, we're going to have to make you do it again, anyway, because we have to have the reference ranges for the labs, except the TSH and T3U.'  

Ranges vary lab to lab and have to come from your own report.  If you had all the T3 and T4 done at the same lab, and the reference ranges are the same, you don't have to repost all of them, just let us know.

The easiest way to post/read labs is something like this:
TSH:  x.xx    range  (x.xx - x.xx)
FT3:  x.xx     range  (x.xx - x.xx)
FT4:  x.xx     range  (x.xx - x.xx

Additionally, it appears that your doctor ordered Total T3 and Total T4. Again, unfortunately, those are considered obsolete and of little value, as is T3 Uptake.  S/he should be ordering Free T3 and Free T4, which are the actual usable thyroid hormones.

Of the total hormones, the majority is bound by protein and can't be used, so it's best to measure the "Free", unbound portion.  FT4 is a storage hormone and isn't used directly; it must be converted to T3 prior to use. Again, the Free, unbound portion is what's used by the individual cells.  

If, by some chance the lab report specifies "Free" for the T3 and T4, please let us know.

Have you had vitamin B-12 tested?

[ballents]

First, I didn't realize how long that was. Sorry.

Second, I spent a while on that chart. Sorry it got all messed up.