Hypo and Radiation

[confusedinnyc]

I'm a male in my late 20s and had radiation treatment to my neck for lymphoma roughly four years ago. Since radiation can harm the thyroid, they took a baseline TSH measurement, which was 1.5 (.55 - 4.78). A year later, I noticed that I was gaining weight and so I had them check my TSH again and it was 3.65 (.55 - 4.78) and my Total T4 was 8.1 (4.5 - 10.9). A couple of years after that, my hair started falling out so I had my thyroid checked again and the TSH was 9.95 (.55 - 4.78) and my T4 was 6.0 (4.5 - 10.9). At this point, I was pretty sure that I had a thyroid problem that was causing my symptoms (weight gain, hair loss, fatigue, brain fog, headaches, dizziness, low body temps, fingernail ridges, stomach pain) and I went to see an endocrinologist.

Here is where things get confusing. Over the last year, I have been taking thyroid hormones. First, I took 50mcg of Tirosint. Strangely, my symptoms did not get any better and my labs didn’t really get better either. After two months my labs were as follows:
TSH: 1.73 (.40 – 4.50) FT4: 1.5 (0.8 – 1.8) FT3: 3.2 (2.3 – 4.2) TT3 75 (76 – 181)
Two months later I continued taking 50mcg and then my labs changed to this:
TSH: 4.23 (.40 – 4.20) FT4: 1.04 (.70 – 1.48) FT3: 2.84 (1.7 – 3.7) TT3: 108 (58 – 159)
I guess I decided that my body was reacting weirdly to Tirosint so I switched to Naturethroid (an NDT) and took roughly the same amount. Three months later I performed blood tests and got these results:
TSH: 3.31 (.40 – 4.50) FT4: 1.3 (.8 – 1.8) FT3: 3.0 (2.3 – 4.2) TT3: 72 (76 – 181)
At this point I just got very frustrated and stopped taking any hormones at all because nothing seemed to be working. So after two months of not taking any medication, I got these labs:
TSH: 4.2 (.45 – 4.5) FT4: 1.33 (.8 – 1.77) FT3: 3.1 (2.0 – 4.4)

It just really seems like nothing I’m doing bears any rational relationship to my lab results. Furthermore, I continue feeling like **** and nothing I do seems to make a difference. Maybe thyroid isn’t actually my problem? I really don’t know what to think anymore so I went to an endocrinologist. Unfortunately, I’m uninsured, so it would have cost $550 just to get a consultation without any labwork. So I came to you all hoping for any suggestions. If you read all of this then you’re incredibly patient, so thank you.

[Barb135]

I'll do my best to answer your questions.  I think I answered some of them in my previous response, but might not have been clear.

1)  Yes, you can still be having thyroid symptoms with those labs... Just because results are in the "normal" range, doesn't mean they are normal for you.  We're all different and we all need our levels to be different. What I need, won't necessarily be right for you, though we do that "rules of thumb" I mentioned above.  Those are just guidelines to aim for, then we fine tune to we each need.

2)   You're right, we don't put much stock in Total T3.  It's considered obsolete, because we now have the much more telling Free T3.  Approximately 90-95% of the T3 in your blood is bound by protein and unusable.  When you test for Total T3, you're testing both bound and unbound T3, which is why we test the Free (unbound) portion, because that tells us what's available for use by individual cells.  As I noted in my previous post, most of us feel best with Free T3 in the upper half to upper third of its range, so even though your Free T3 is hovering around mid range, it's not high enough for you.  

T4 works the same way - with 90-95% being bound by protein and unusable, so always be sure to insist on Free T4, not Total.

3)  When changing thyroid med/dosages, it's not unusual for symptoms to get worse or for new ones to appear, which could very well account for the headaches you got when you tried to increase your NatureThroid dosage from 1/2 to 3/4 grain.  I don't think it has anything to do with being a reaction to NatureThroid per se or that you can't handle T3.  

Thyroid meds are like many others - you may have side effects/ worsened symptoms, but they typically go away with continued use.  You may have to treat the headaches for short time and see if they go away.  If they don't, you may have to try a different type of med combo - perhaps a T4 med with and added smaller dose of T3, such as cytomel or its generic counterpart, liothyronine.

4)  Since your FT4 stayed the same, even after 2 months without med and your FT3 increased, it's possible that your thyroid is still producing some hormones on its own.  No, it doesn't mean that NatureThroid doesn't work for you.

You should ask to get tested for Hashimoto's Thyroiditis.  Often with Hashimoto's, a person can swing back and forth from hypo to hyper to normal before the thyroid stops producing hormones at all and you settle into permanent hypo.  Since you had the radiation, this could be happening to you anyway.  Ask for the antibody tests - Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb), just to be sure that the radiation issue is all you're dealing with.

Hope this helps clarify things for you.

[confusedinnyc]

Thanks so much for your reply. I don't expect you to have answers for everything, but here are a few questions that I was wondering about:

1. Is it possible that I could be having thyroid symptoms even with these labs, which are largely within normal ranges? (My symptoms plus the change from baseline -- taken two months after radiation -- make me think yes and the possibility of a solution to my problems makes me want to believe yes.)

2. I know folks around here don't put much stock in Total T3, but is there any significance to the fact that my Total T3 is pretty consistently below normal range (even though Free T3 is hovering around middle of range)?

3. I had the same thought that my dose wasn't high enough. So I tried to raise my dose of naturethroid from 1/2 grain to 3/4 grain and I got really bad headaches (even though my labs and other symptoms said that I was far from hyperthyroid). Why do you think that happened? Is it a reaction to naturethroid itself or just that my body couldn't handle that T3 for some reason?

4. After not taking my naturethroid for two months, my FT4 stayed the same, my FT3 slightly increased, and my TSH slightly increased. Symptoms are more or less the same. Does that mean that naturethroid just doesn't work at all for me? Especially since I couldn't raise the dose without splitting headaches.

[Barb135]

I'm not really incredibly patient, but I did read it all... It's late in my world and I don't really have time to calculate all of the percentages, but I can look at your labs and see that the biggest problem is that you never took a high enough dose of either Tirosint or NatureThroid to relieve your symptoms.

Rule of thumb (where most of us find we feel best) is for FT4 to be mid range (50% of the range).  Just "eyeballing" them, it looks like some of yours have been there or maybe slightly higher, but FT4 isn't used directly; it must be converted to FT3 to be used by individual cells.

Rule of thumb for FT3 (where most of us find we feel best) is for FT3 to be in the upper half to upper third of its range.  FT3 should be higher in its range than FT4 in its.. Just looking at the last labs you posted, your FT3 is only at 45% of its range, while your FT4 is at 54% of the range.  This tells me you might have a conversion issue, but we can't confirm that since you haven't taken medication for 2 months.

Your previous FT3 was only at 36% of its range, while your FT4 was right at 50%, which further suggests a conversion issue.  

As far as I can see, you simply never got your dosage high enough to relieve your symptoms.  

You don't say how long ago the latest tests were, so I'm going to have to recommend new tests for TSH, FT3 and FT4. We'll assume your thyroid issue to be caused by the radiation vs an autoimmune condition, so antibody testing shouldn't really be necessary.

There are websites from which you can order the labs without a doctor's order - you order, pay by credit/debit card, they send you a lab order and tell you which lab to go to in your area (usually LabCorp), you get the blood draw, they send the results directly to you and you take them to your doctor.  

You're still going to have to have a doctor to prescribe the thyroid hormones you need.  That doesn't necessarily have to be an endocrinologist... many endos specialize in diabetes and are not good thyroid doctors anyway; shop around - my endo only charges $240/visit and I've been with him since 2009; interview doctors over the phone to make sure you'll get the best one for your money.  Some will give you a discount if you don't have insurance; some will charge more.  

Bottom line --- you need thyroid med - you can't just stop taking it after you've had radiation on your neck, considering your labs and symptoms...