Also, when I had my physical last March they found I had a pretty decent vitamin D deficiency (I think my number was 15?) and I've been on D3 2000 IU since then.
Yes, your ENT could be very wrong. Just being "in range" on blood tests doesn't always mean we will be symptom-free. Your symptoms are kind of screaming "thyroid". So, when you get those lab reports, please post them with reference ranges, and we can give you our take on them. Were you tested for antibodies for autoimmune thyroid disease...TPOab (thyroid peroxidase antibodies), TGab (thyroglobulin antibodies and/or TSI (thyroid stimulating immunoglobulin)?
Let me reserve comment on the partial vs. total until I have more information.
Vitamin D is abysmal, if it really is 15. D is necessary for both the synthesis of thyroid hormones in the thyroid and for the use of thyroid hormones at the cellular level. Even when serum thyroid hormone levels are adequate, you can be hypo at the cellular level if D is inadequate because thyroid hormones can't get into cells and do their work without D. Have you checked with your doctor? With a D deficiency like yours, 50,000 IU a week is often prescribed until serum D levels begin to rise, then it's cut back slowly.
Just picked up my lab paperwork and found my physical results from last year. I'm just going to post everything, since I'm not really sure what (other than the obvious thyroid levels) might be pertinent as well.
Vitamin D: 15.94
Total T3: 2.0 ng/mL Range: 0.6-1.8
TSH: 1.800 uIU/mL Range: 0.358-3.740
Free Thyroxine: 1.06 ng/dL Range: 0.76-1.46
Total T4: 15.0 ug/dL Range: 4.7-13.3
Calcium: 9.3 mg/dL Range: 8.5-10.1
BUN: 12 mg/dL Range: 9-23
Creatinine: 0.6 mg/dL Range: 0.60-1.30
Blood Sugar: 115 mg/dL Range: 70-106
These were the results from my ENT's round of tests. I know the GP ran some kind of antibody test but I'm not sure which one(s). I'll have to call tomorrow and see if I can get my numbers.
I don't know how long ago those were. TT3 and TT4 are both above range, which would indicate hyper. FT4 is 43% of range, which is just a little shy of the 50% target, and what I'd consider very adequate for someone not taking thyroid meds. They didn't test FT3.
Does your FT4 say the method of testing, i.e. either radioimmunoassay or direct dialysis? I think your birth control pills are affecting the test.
The vitamin D test was last March, but the other numbers were from February 27th. Unfortunately the paperwork doesn't specify the method of testing :-/
I'm sure I'll be seeing an endocrinologist after my surgery, whatever direction that goes, but do you think I should try to get an appointment with one beforehand and have some additional tests run? My ENT appointment is next Tuesday, but I'm unsure as to when he'll schedule my surgery so I'm sure I'd have some time.
Usually, and I can't say this is always, if the testing method is direct dialysis, it's specified on the report. If the method is not direct dialysis, birth control pills will affect the result. I'm suspicious this is the case since your TT3 and TT4 are high, but your FT4 isn't.
TT4 is the total amount of T4 in your blood, but much of that is chemically bound and unavailable to cells. FT4 is the unbound part, which is available for use.
Yes, definitely, if I were you, I'd see an endo first and get his/her opinion. Many times, thyroid meds will reduce the size of nodules or even make them disappear. I think it would be worth getting a second opinion. ENTs only do the surgery. Endos treat thyroid disorders. It would also be advantageous to have a relationship with an endo so that is all set up before surgery (if it's even necessary). Take the time you need to get a second opinion. You can schedule the surgery for whenever you want it.
I'll look for more test results when you have them
Thank you so much, you've given me so much info. I had no idea the birth control could influence the test results (and I'm guessing the ENT and GP didn't either when they ordered the blood tests). Hypothetically speaking then, could it be possible that my levels are all fine, and if that were the case, would they even be able to put me on a medication to reduce the size of the nodules because then wouldn't that in turn throw off the potentially okay levels that exist? I know half of my thyroid is definitely coming out (the pressure it's putting on my throat is really causing problems with my swallowing and breathing, so I'd prefer to not take a wait and see approach to see if that can be reduced in size).
Also, apparently they did test the free T3 levels but didn't include that in the paperwork they gave me yesterday for some reason, or the results of the Lyme titer. Hopefully I'll have more information next week after my ENT appt.
Received some additional test results:
Free T3: 3.7 pg/mL Range: 2.3-4.2
Anti-Thyroid Peroxidase 48 u/mL Range: 0 - 60
Also, I don't know if this is relevant, but I also have TSH levels from last year and from January of this year, as well as T3 and T4 from January (I included the latest tests for easier reference).
4/30/14 1.140 Range 0.358-3.740
(Could it be possible that a lower TSH number is more ideal for me?)
1/19/15 16.1 ug/dL Range: 4.7-13.3
1/19/15 1.7 ng/mL Range: 0.6-1.8
"Hypothetically speaking then, could it be possible that my levels are all fine, and if that were the case, would they even be able to put me on a medication to reduce the size of the nodules because then wouldn't that in turn throw off the potentially okay levels that exist?"
That's definitely a possibility. We're still gathering information.
Another piece of information that might help you decide between a PT and a TT is the antibody tests. If you have Hashi's, you are very likely to have nodules...most of us do. Unless they're over 1 cm or affecting breathing and/or swallowing, they're usually just watched for changes (which often just means periodic ultrasound).
Yes, you'll have more information after you see the ENT. It will be interesting to see, especially what your FT3 is doing.
Is "Anti-Thyroid Peroxidase" the same as the TPOab test?
The GP ran a TPO test in January and it came back as 48 with a range of 0-60.
Free T3 came back as 3.7 pg/mL, with the range being 2.3-4.2.
I'm sorry, I missed that one whole post above with your TPOab and FT3 in it. You must have been typing your second post as I was typing my reply.
Your TPOab is "somewhat elevated", a term that I've never found quantified. TPOab can be somewhat elevated with other autoimmune diseases. I'd repeat that to see if there's any trend going on. It's not unusual for those of us with Hashi's to have antibody counts in the high hundreds, or even thousands, but yours could indicate the start of something. He didn't test thyroglobulin antibodies (TGab)? Some of us are positive for one of those, some the other and some both.
Your FT3 is a little high, but not terribly. However, your TT3 did get above range by February, so we have to wonder if FT3 did, too.
Where we're each comfortable on the TSH scale varies considerably. So, it's possible you feel better with it low. However, TSH is such an unreliable indicator that it's far preferable to look at FT3 and FT4 and not worry about TSH.
The only antibody test I could find among my reports was that one instance of TPO. I've send in a request for a referral for the endocrinologist, so as soon as I get the go ahead from my doctor I'll be able to move forward with that. From your posts, as well as information I've found on other support group pages, I'm thinking I should request some additional blood work and ask for the following:
TPO (to recheck)
Vitamin D (it'd be helpful to see if there's been any improvement)
Cortisol (general stress level has been very high for months, wondering how my adrenals are handling it)
Also, would it be worth having them check Reverse T3?
Seem pretty comprehensive?
I think TSI is a good idea, but if you get any pushback, I wouldn't insist on it. If you had Graves', your TSH would be much lower than it is, as in almost undetectable.
Vitamin D is a good idea, especially since you are supplementing so little. Cortisol blood test is kind of useless. If you can, request a 24-hour saliva test, where they get four discreet readings at different times of the day. Warning: Many doctors think saliva tests are just this side of witchcraft.
RT3: Same as TSI. If they're feeling generous with the tests, it would be interesting to see. However, your TT3 and FT3 are so high that I don't think it's a factor in how you are feeling right now. This is another test that a lot of mainstream medicine considers quackery. So, If I had a battle to pick, it wouldn't be over this one at this time. If you do get RT3, be sure you have FT3 tested on the same draw. Raw numbers for RT3 don't tell us much, it's the ratio of FT3:RT3 that's important. So, high RT3 with high FT3 is "normal", while high RT3 with low FT3 isn't.
Of course, to those I would add repeats of:
FT4 (making sure it's direct dialysis)