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Upcoming Thyroid Surgery, Diagnosis Questions
Hi everyone, I'm new to posting but I've been reading through these forums for a few weeks now. In the middle of January I came home from work and my wife noticed my neck looked very swollen. When I felt it I noticed there was some kind of growth, so I made an appointment with my GP the following Monday, and she sent me for blood work and an US. US came back with nodules and a cyst so I made an appt. with an ENT. ENT was very nice and thorough, ordered an MRI, FNA, more thorough blood work, and an uptake and scan of my thyroid. He explained I had two nodules on the right side of my thyroid, about 1cm each, a 2cm cyst on the left side as well a 4cm nodule on the left side (the largest of which he wanted the biopsy on).
Now, about two years ago I had a terrible run of illnesses that included the flu, pneumonia, Lyme, mono, mono-induced hepatitis, and a severe reaction an antibiotic. All at the same time. I was pretty much out of commission for over a month and my immune system took quite a hit. Recovery was slow, and after about six months I started to feel somewhat like myself. A little while later though I started feeling progressively worse.
For the last year I've been experiencing severe anxiety and depression, memory loss, brain fog, confusion, extreme irritability, very heavy periods and terrible cramps despite going on birth control to help regulate my periods, constant fatigue and exhaustion, muscle and joint pain, aches, and weakness, heart palpitations, excessive sweating and heat intolerance, GERD and stomach issues, trouble sleeping, weight gain (probably about 30lbs in the last eight months or so), eye issues, tightness in my throat, trouble swallowing, shortness of breath, etc.
My initial blood work done by the GP came back "normal." Biopsy came back benign, scans came back normal, and the second round of blood work also came back "normal." I have a meeting with the ENT next week to discuss surgery (he wants to take out the half with the large nodule because it's causing swallowing and breathing issues). He doesn't believe that my thyroid is causing any of my issues beyond the tightness in my throat/swallowing issues. Could he be wrong? I will get a copy of my lab work so I have reference numbers, but I don't have them at this time to post. Is it still possible for my thyroid to be causing me these kinds of issues despite the blood work and scans coming back "normal?"
My other question is this: Should I push him to do a total thyroidectomy vs. just the partial? I know it's going to be a long road getting the medication to a point where my levels would be optimal, but I feel like knowing I have two other nodules on the remaining lobe, not knowing if they're cancerous or not, and just waiting and seeing what will happen will cause me continual stress and anxiety, which I'm sure can't be good for my health. Also, I had a terrible time with the FNA (the doctors and technicians were wonderful, I'm sure it wasn't something they did, but it took six days just for the swelling to go down, and here on day eight I'm still experiencing pain and discomfort from it) so I don't think I would be up for having another biopsy on the remaining nodules were they to grow large enough to warrant it. At this point, the certainty of knowing I'll have no thyroid and will be on meds is better than the What Ifs of maybe still needing meds with half a thyroid, potential cancer, continued nodule growth, etc.
Sorry for the long tirade, and I'll try to get a hold of my labs so I can post some numbers. Thanks for any input!
Now, about two years ago I had a terrible run of illnesses that included the flu, pneumonia, Lyme, mono, mono-induced hepatitis, and a severe reaction an antibiotic. All at the same time. I was pretty much out of commission for over a month and my immune system took quite a hit. Recovery was slow, and after about six months I started to feel somewhat like myself. A little while later though I started feeling progressively worse.
For the last year I've been experiencing severe anxiety and depression, memory loss, brain fog, confusion, extreme irritability, very heavy periods and terrible cramps despite going on birth control to help regulate my periods, constant fatigue and exhaustion, muscle and joint pain, aches, and weakness, heart palpitations, excessive sweating and heat intolerance, GERD and stomach issues, trouble sleeping, weight gain (probably about 30lbs in the last eight months or so), eye issues, tightness in my throat, trouble swallowing, shortness of breath, etc.
My initial blood work done by the GP came back "normal." Biopsy came back benign, scans came back normal, and the second round of blood work also came back "normal." I have a meeting with the ENT next week to discuss surgery (he wants to take out the half with the large nodule because it's causing swallowing and breathing issues). He doesn't believe that my thyroid is causing any of my issues beyond the tightness in my throat/swallowing issues. Could he be wrong? I will get a copy of my lab work so I have reference numbers, but I don't have them at this time to post. Is it still possible for my thyroid to be causing me these kinds of issues despite the blood work and scans coming back "normal?"
My other question is this: Should I push him to do a total thyroidectomy vs. just the partial? I know it's going to be a long road getting the medication to a point where my levels would be optimal, but I feel like knowing I have two other nodules on the remaining lobe, not knowing if they're cancerous or not, and just waiting and seeing what will happen will cause me continual stress and anxiety, which I'm sure can't be good for my health. Also, I had a terrible time with the FNA (the doctors and technicians were wonderful, I'm sure it wasn't something they did, but it took six days just for the swelling to go down, and here on day eight I'm still experiencing pain and discomfort from it) so I don't think I would be up for having another biopsy on the remaining nodules were they to grow large enough to warrant it. At this point, the certainty of knowing I'll have no thyroid and will be on meds is better than the What Ifs of maybe still needing meds with half a thyroid, potential cancer, continued nodule growth, etc.
Sorry for the long tirade, and I'll try to get a hold of my labs so I can post some numbers. Thanks for any input!
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:
FT3
FT4 (making sure it's direct dialysis)
TSH
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:
FT3
FT4 (making sure it's direct dialysis)
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)
TGab
TSI
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?
TPO (to recheck)
TGab
TSI
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'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.
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 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.
Free T3 came back as 3.7 pg/mL, with the range being 2.3-4.2.
"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.
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.
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).
TSH
4/30/14 1.140 Range 0.358-3.740
1/19/15 1.55
2/27/15 1.8
(Could it be possible that a lower TSH number is more ideal for me?)
T4
1/19/15 16.1 ug/dL Range: 4.7-13.3
2/27/15 15.0
T3
1/19/15 1.7 ng/mL Range: 0.6-1.8
2/27/15 2.0
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).
TSH
4/30/14 1.140 Range 0.358-3.740
1/19/15 1.55
2/27/15 1.8
(Could it be possible that a lower TSH number is more ideal for me?)
T4
1/19/15 16.1 ug/dL Range: 4.7-13.3
2/27/15 15.0
T3
1/19/15 1.7 ng/mL Range: 0.6-1.8
2/27/15 2.0
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.
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.
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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