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Can I Ask For Some Reassurance in my Diagnosis?
Hi everyone, I've spent the last while scrolling through the message boards, and I've learned some things. However, I have come up with a few things that have made me feel unsure, and I know that doesn't help the situation.
Background: Almost 6 years ago, I started to have some difficulties I'd never had. Insomnia, cycstic acne, a "nervous stomach", fatigue and terrible weakness, extreme muscle tightness in my neck. I went to the doctor and he told me I was stressed. This further complicated things because I didn't "feel" stressed. I went on to lose almost 40 pounds, and no matter how much I slept, it was never enough. My anxiousness increased over how I was feeling. I went back to the doctor (a different one in my small town clinic) and he said my thyroid felt enlarged and that he was going to order some bloodwork and an ultrasound. He ordered a TSH and FT4. Here is how those came back: TSH - 1.93 (range .27-4.2) and FT4 - 1.6 (range .9-1.7). Because they were in range, he cancelled the ultrasound. He told me that everything I was telling him screamed "thyroid" but he couldn't figure it out and wanted me to go to Mayo Clinic. I didn't go.
Over time, I went on to 2 different doctors who continually checked my thyroid. About 9 months later, I got the following lab results: TSH - .006 (range .45-4.5), T4 - 15.5 (range 4.5-12), T3 Uptake - 32 (range 24-39) and FT4 - 2.62 (range .82-1.77). This would indicate hyperthyroidism, I believe. Nothing was done.
7 moths later, I got these results: TSH - 14.070 (.45-4.5), T4 - 6.3 (range 4.5-12), T3 Uptake - 20 (range 24-39), FT4 - .70 (range .82-1.77). Now indicating hypothyroidism. Nothing was done.
A simple TSH at a health fair a year later showed 2.51, and a year after that my gynecologist checked TSH and it was 2.16. I don't have the ranges on those.
I picked myself up by the bootstraps and told myself I had to just get over it, but finally over Christmas this year, I couldn't take it any more and went back to the doctor. I absolutely freeze to death, I feel like I have no lifeblood, I get anxious, and just generally feel like an emotional wreck. They checked my labs and they called saying my TSH was 5.8 and I needed to start synthroid right away. I asked about the T4 and T3, and the nurse said they were in range, however I don't know the numbers. I was so relieved that someone was doing something! I started on 50mcg of synthroid and 3 weeks later, the insomnia was killing me and my heart rate was high. I called the clinic and a different doctor was in - he told me to cut the dose in half and get through the weekend and see how I felt. But he was really unhappy that no one had ever done an ultrasound or anything, and really wanted me to consider stopping the synthroid in preparation for an uptake scan. In fact, he was really troubled that no one had taken time to figure out WHY my thyroid was doing what I was doing. I am scheduled to have my first labs after starting synthroid here in a few weeks. I can't imagine much will be improved as I am taking the smallest dose there is since he had me cut the 50 in half. I still feel awful and ruminating over it all is not helping.
My mom had Graves, RAI, and now on synthroid - all just this year. My sister has been hypothyroid since she was 12 (she's 28), and my paternal grandmother had thyroid cancer.
So my questions are these: Is it unreasonable to assume my thyroid has been the problem all this time, even though I kept getting told in the beginning that my labs were normal? My biggest fear is being told that it's "mental illness". And secondly, I will do as this doctor asks, but can you give me reassurance that somehow there is a way to feel better eventually? I'm just terrified after reading some of the hysteria from others that there isn't help to be had. Thank you all so much!
Background: Almost 6 years ago, I started to have some difficulties I'd never had. Insomnia, cycstic acne, a "nervous stomach", fatigue and terrible weakness, extreme muscle tightness in my neck. I went to the doctor and he told me I was stressed. This further complicated things because I didn't "feel" stressed. I went on to lose almost 40 pounds, and no matter how much I slept, it was never enough. My anxiousness increased over how I was feeling. I went back to the doctor (a different one in my small town clinic) and he said my thyroid felt enlarged and that he was going to order some bloodwork and an ultrasound. He ordered a TSH and FT4. Here is how those came back: TSH - 1.93 (range .27-4.2) and FT4 - 1.6 (range .9-1.7). Because they were in range, he cancelled the ultrasound. He told me that everything I was telling him screamed "thyroid" but he couldn't figure it out and wanted me to go to Mayo Clinic. I didn't go.
Over time, I went on to 2 different doctors who continually checked my thyroid. About 9 months later, I got the following lab results: TSH - .006 (range .45-4.5), T4 - 15.5 (range 4.5-12), T3 Uptake - 32 (range 24-39) and FT4 - 2.62 (range .82-1.77). This would indicate hyperthyroidism, I believe. Nothing was done.
7 moths later, I got these results: TSH - 14.070 (.45-4.5), T4 - 6.3 (range 4.5-12), T3 Uptake - 20 (range 24-39), FT4 - .70 (range .82-1.77). Now indicating hypothyroidism. Nothing was done.
A simple TSH at a health fair a year later showed 2.51, and a year after that my gynecologist checked TSH and it was 2.16. I don't have the ranges on those.
I picked myself up by the bootstraps and told myself I had to just get over it, but finally over Christmas this year, I couldn't take it any more and went back to the doctor. I absolutely freeze to death, I feel like I have no lifeblood, I get anxious, and just generally feel like an emotional wreck. They checked my labs and they called saying my TSH was 5.8 and I needed to start synthroid right away. I asked about the T4 and T3, and the nurse said they were in range, however I don't know the numbers. I was so relieved that someone was doing something! I started on 50mcg of synthroid and 3 weeks later, the insomnia was killing me and my heart rate was high. I called the clinic and a different doctor was in - he told me to cut the dose in half and get through the weekend and see how I felt. But he was really unhappy that no one had ever done an ultrasound or anything, and really wanted me to consider stopping the synthroid in preparation for an uptake scan. In fact, he was really troubled that no one had taken time to figure out WHY my thyroid was doing what I was doing. I am scheduled to have my first labs after starting synthroid here in a few weeks. I can't imagine much will be improved as I am taking the smallest dose there is since he had me cut the 50 in half. I still feel awful and ruminating over it all is not helping.
My mom had Graves, RAI, and now on synthroid - all just this year. My sister has been hypothyroid since she was 12 (she's 28), and my paternal grandmother had thyroid cancer.
So my questions are these: Is it unreasonable to assume my thyroid has been the problem all this time, even though I kept getting told in the beginning that my labs were normal? My biggest fear is being told that it's "mental illness". And secondly, I will do as this doctor asks, but can you give me reassurance that somehow there is a way to feel better eventually? I'm just terrified after reading some of the hysteria from others that there isn't help to be had. Thank you all so much!
COMMUNITY LEADER
When a doctor orders "T4 and T3", they are, typically, ordering Total T4 and Total T3, which are both considered to be obsolete. They need to specify Free T4 and Free T3, which are the active hormones.
Here's just a little "Thyroid 101"... The thyroid produces both T4 and T3 hormones, but mostly T4. Of the Total T4 produced, most is bound by a protein that makes it unusable. The portion not bound by protein (Free T4) is we need to have measured. Free T4 isn't used directly; it must be converted to T3 prior to use.
Like T4, most of the T3, either what's produced by the thyroid or what's converted from Free T4 is bound by a protein and is unusable. Like T4, we need to measure the unbound portion of the T3 (Free T3) to find out how much is available for use. Free T3 is the thyroid hormone used by nearly every cell in our body.
It's important to know that just because the labs are in the "normal" range, doesn't mean they are normal for you or that you will feel well with those levels. This is a misconception that many doctors have and unfortunately, it keeps many patients ill for long periods of time.
The body does have some antibodies that fight diseases, but those are different from the antibodies that attack and destroy our own body parts. Thyroid antibodies are not present in everyone... they're produced when something goes wrong and the body determines, for some reason, that the thyroid is foreign. The antibodies are produced to destroy the thyroid.
One thing that's very important is that you should get copies every time you have labs, imaging or other tests and retain them for your own records.
Many of us have suffered for years, but if keep our records and learn all we can, so we can eventually, find a good doctor who will treat the way we need to be treated, we can usually, come out on top. There's no reason you should have to spend the next 40 (or even 1 year) feeling as rotten as you have in the past. A good doctor should have you on the road to recovery very soon.
Here's just a little "Thyroid 101"... The thyroid produces both T4 and T3 hormones, but mostly T4. Of the Total T4 produced, most is bound by a protein that makes it unusable. The portion not bound by protein (Free T4) is we need to have measured. Free T4 isn't used directly; it must be converted to T3 prior to use.
Like T4, most of the T3, either what's produced by the thyroid or what's converted from Free T4 is bound by a protein and is unusable. Like T4, we need to measure the unbound portion of the T3 (Free T3) to find out how much is available for use. Free T3 is the thyroid hormone used by nearly every cell in our body.
It's important to know that just because the labs are in the "normal" range, doesn't mean they are normal for you or that you will feel well with those levels. This is a misconception that many doctors have and unfortunately, it keeps many patients ill for long periods of time.
The body does have some antibodies that fight diseases, but those are different from the antibodies that attack and destroy our own body parts. Thyroid antibodies are not present in everyone... they're produced when something goes wrong and the body determines, for some reason, that the thyroid is foreign. The antibodies are produced to destroy the thyroid.
One thing that's very important is that you should get copies every time you have labs, imaging or other tests and retain them for your own records.
Many of us have suffered for years, but if keep our records and learn all we can, so we can eventually, find a good doctor who will treat the way we need to be treated, we can usually, come out on top. There's no reason you should have to spend the next 40 (or even 1 year) feeling as rotten as you have in the past. A good doctor should have you on the road to recovery very soon.
COMMUNITY LEADER
Ask your doctor to order thyroid antibody tests to find out what's going on. In order to determine if you have Hashimoto's, you need to have Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb). You need them both, because some of us have one or the other, and some have them both. Either can diagnose Hashimoto's.
The definitive test for Graves Disease is Thyroid Stimulating Immunoglobulin (TSI).
It's possible to have both Hashimoto's and Graves at the same time, but that's pretty rare. It's not the unusual, at all, to swing between hyper to hypo and normal with Hashimoto's before finally settling at permanent hypo.
It's also a good thing to have the ultrasound because it's possible to have nodules that can leak hormones independently of the thyroid. This could be the reason for the period(s) of hyperthyroidism. If you have an active nodule, the chances are good they will recommend having your thyroid removed.
It doesn't have to be scary; the important thing is to have a good doctor that's willing to do the right tests to get to the bottom of what's going on and treat you properly. So far, yours seems to be doing relatively well, except that he's ordering some obsolete tests. Another important factor is for you to learn as much as you can, so you know what tests you need and can be part of your testing/treatment.
T3 uptake is considered obsolete, as it's a round about way of testing for Free T4, which you're already getting tested. In addition, Total T3 is not very useful, as well, since it shows both bound and unbound T3 in your blood. It doesn't really hurt anything to test these parameters; it's just a waste of money. You need to ask your doctor to test for Free T3, which is the unbound portion of T3 and is the amount that's available for use by the individual cells in your body. I'll be happy to explain that, if you'd like me to.
The definitive test for Graves Disease is Thyroid Stimulating Immunoglobulin (TSI).
It's possible to have both Hashimoto's and Graves at the same time, but that's pretty rare. It's not the unusual, at all, to swing between hyper to hypo and normal with Hashimoto's before finally settling at permanent hypo.
It's also a good thing to have the ultrasound because it's possible to have nodules that can leak hormones independently of the thyroid. This could be the reason for the period(s) of hyperthyroidism. If you have an active nodule, the chances are good they will recommend having your thyroid removed.
It doesn't have to be scary; the important thing is to have a good doctor that's willing to do the right tests to get to the bottom of what's going on and treat you properly. So far, yours seems to be doing relatively well, except that he's ordering some obsolete tests. Another important factor is for you to learn as much as you can, so you know what tests you need and can be part of your testing/treatment.
T3 uptake is considered obsolete, as it's a round about way of testing for Free T4, which you're already getting tested. In addition, Total T3 is not very useful, as well, since it shows both bound and unbound T3 in your blood. It doesn't really hurt anything to test these parameters; it's just a waste of money. You need to ask your doctor to test for Free T3, which is the unbound portion of T3 and is the amount that's available for use by the individual cells in your body. I'll be happy to explain that, if you'd like me to.
2 Comments
Thank you, Barb! The extensive labs I posted weren’t run by the doctor that is currently working on me. I think he ran TSH, T4 and T3 if I remember looking at the lab slip correctly. I don’t know the values other than the nurse told me they were “normal”. Way back in the beginning, a doctor ran the antibodies but all they said were that the tpo were present. Aren’t they “present” in everyone, just out of range for Hashis? I don’t know anything about that.
I’m scared, honestly, because I’ve suffered for long enough with no answers that I fear another 40 years of feeling rotten. I manage through my “normal and busy” life but it’s HARD and there are times when I get pretty anxious about having to keep fighting so hard.
I’m scared, honestly, because I’ve suffered for long enough with no answers that I fear another 40 years of feeling rotten. I manage through my “normal and busy” life but it’s HARD and there are times when I get pretty anxious about having to keep fighting so hard.
Whoops - those newest and current labs - the T3 and T4 I don't know except she said they were normal, but that was the set of labs that showed TSH at 5.8.
I should of said block and replace therapy is used for non resolving Hashitoxicosis (Graves and Hashimoto's antibodies).
I've had both types of Hashitoxicosis. In my case leakage symptoms of active Hashimoto's thyroiditis for four years (hyper symptoms on and off - this is more common earlier on with Hashimoto's thyroiditis) and once a two month bout of intense hyperthyroidism from Graves antibodies also showing up. In that episode I had eye symptoms (thankfully no bulging) and pretibal myexedema on my shin (took a year to go away).
If you keep swinging between hyper and hypo you can try block and replace therapy treatment - taking an anti thyroid drug and afterward, at the appropriate timing, taking thyroid hormone replacement.
Autoimmune thyroid disease runs in families due to genes (notably mentioned HLA-DR3 or HLA-DR5). This gene needs to be triggered (eg: stress, viruses) to activate the autoimmune disease.
If you keep swinging between hyper and hypo you can try block and replace therapy treatment - taking an anti thyroid drug and afterward, at the appropriate timing, taking thyroid hormone replacement.
Autoimmune thyroid disease runs in families due to genes (notably mentioned HLA-DR3 or HLA-DR5). This gene needs to be triggered (eg: stress, viruses) to activate the autoimmune disease.
1 Comments
Thank you for that information! I don’t know why it has been carrying on for so long?! When I was in the clinic last time, the doctor said “you have got a thyroid problem we have to get to the bottoms of.” Sounds like he’s right.
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