Hashimoto's disease

babycakes0921 · June 2011

Question for anyone with Hashimoto's or Graves' disease: how did your doctor make the diagnosis - specifically, what tests did they do and what did they look for?

I had two rounds of thyroid blood tests done through my RE, I can't get into an endocrinologist until November and my RE (who I don't really care for) is being no help at all with answering my questions.

My TSH levels were high (5.2 one time, and 8 the next time), and I had TPO antibodies (I can't remember the level right now, but it wasn't THAT high). I have no real symptoms of these diseases but I have been underweight my entire life.

I have spent hours with Dr. Google, but I am just getting frustrated with the lack of support from the RE. They pretty much just prescribed me synthroid and said to come back in 4 weeks for a blood test and that's all they could to for me/tell me. I asked if it could be the cause of our infertility and all the RE said was "maybe." end of conversation.

skiboston · June 2011

My sister has it. She went to an endocrinologist every month for 6 months and they tracked her TSH and T4. They also sent her to a rheumatologist because some of the issues with hashimoto are joint spec with shoulders and hips both problems she had.

Sorry about spelling i took to ativan before a biopsy this afternoon

babycakes0921 · June 2011

mg0202:
I have Hashimoto's. Mine was diagnosed through blood tests, ultrasound, and a nuclear medicine scan. My original bloodwork was off, which led to more bloodwork (T3, T4, thyroid antiboidies). My thyroid antibodies were crazy high. I had an ultrasound also. Adding it all up they concluded Hashimoto's. The nuclear medicine study was because the found some nodules during the ultrasound. The treatment is the same for hypothyroid and Hashimoto's, I will be on synthroid for life. Once the synthroid starts working the blood levels should come back into the normal range.
Once the thyroid hormones are abnormal it can start affecting the other hormones in your body. This can lead to problems with fertility. My RE was also a little vague about some of this, but she said if my blood tests were normal then it probably won't effect things too much.
Good luck, it can be difficult to find the right dosage to bring your levels back to normal. If it takes so long to see and endocrinologist, maybe a PCP can help until then?

Thanks for the reply! I go for my first blood tests after taking a low dose of synthroid next week, so hopefully I will be closer to getting the right dose after that. I guess I knew it would be vague, but I was at least hoping for SOMETHING from my RE, and I literally got a silent stare. I am sure that I will have more answers after seeing the endocrinologist but I just hate waiting. I called my PCP and he essentially said I needed to see an endo and taking the synthroid was the right first step and to make sure I keep having my levels monitored. It's good to know that your RE said that once your levels are normal it shouldn't affect things.

bhead81 · June 2011

mg0202:

I have Hashimoto's. Mine was diagnosed through blood tests, ultrasound, and a nuclear medicine scan. My original bloodwork was off, which led to more bloodwork (T3, T4, thyroid antiboidies). My thyroid antibodies were crazy high. I had an ultrasound also. Adding it all up they concluded Hashimoto's. The nuclear medicine study was because the found some nodules during the ultrasound. The treatment is the same for hypothyroid and Hashimoto's, I will be on synthroid for life. Once the synthroid starts working the blood levels should come back into the normal range.

Once the thyroid hormones are abnormal it can start affecting the other hormones in your body. This can lead to problems with fertility. My RE was also a little vague about some of this, but she said if my blood tests were normal then it probably won't effect things too much.

Good luck, it can be difficult to find the right dosage to bring your levels back to normal. If it takes so long to see and endocrinologist, maybe a PCP can help until then?

I too have hashimoto's and they diagnosed me through blood work and ultrasounds. My thyroid antibodies were also through the roof which was a good sign that it was hashimoto's. Eventially we also did a nuclear thyroid scan and biopsy which determined I also had cancer but that was about a year or so after my inital hashimoto's dx.

Like the PP said getting the meds right can be a bit of a challenge. It took a good year to find the right dose the first time and then after the cancer I had to do it all over again. Just because the blood levels are good doesn't mean you are on the right dose...I found this out, I need to be on the high side of normal to feel okay.

Good luck!

babycakes0921 · June 2011

bhead81:
mg0202:

I have Hashimoto's. Mine was diagnosed through blood tests, ultrasound, and a nuclear medicine scan. My original bloodwork was off, which led to more bloodwork (T3, T4, thyroid antiboidies). My thyroid antibodies were crazy high. I had an ultrasound also. Adding it all up they concluded Hashimoto's. The nuclear medicine study was because the found some nodules during the ultrasound. The treatment is the same for hypothyroid and Hashimoto's, I will be on synthroid for life. Once the synthroid starts working the blood levels should come back into the normal range.
Once the thyroid hormones are abnormal it can start affecting the other hormones in your body. This can lead to problems with fertility. My RE was also a little vague about some of this, but she said if my blood tests were normal then it probably won't effect things too much.
Good luck, it can be difficult to find the right dosage to bring your levels back to normal. If it takes so long to see and endocrinologist, maybe a PCP can help until then?

I too have hashimoto's and they diagnosed me through blood work and ultrasounds. My thyroid antibodies were also through the roof which was a good sign that it was hashimoto's. Eventially we also did a nuclear thyroid scan and biopsy which determined I also had cancer but that was about a year or so after my inital hashimoto's dx.
Like the PP said getting the meds right can be a bit of a challenge. It took a good year to find the right dose the first time and then after the cancer I had to do it all over again. Just because the blood levels are good doesn't mean you are on the right dose...I found this out, I need to be on the high side of normal to feel okay.
Good luck!

Thanks for the information! I didn't realize it could take that long to get the meds right - at least mentally I know what I am in for now. I am sorry to hear about all that you have been through -- best of luck on your upcoming IUI and foster/adopt process!

solarflare · June 2011

Hi there, I am jumping over from TTC over 35 - hope you don't mind. About 6 months ago I found out I have high TSH levels (13, 8). I do not have Hashimoto's because I don't have antibodies. However, it took about 4 months to get to a level of 3 (TSH) and then the next test was .3 (TSH), so a slightly increased dose of levothroid after the 3 TSH test sent me way over. Now they have pulled back my dose and will re-test in a month. The thyroid is incredibly important in regulating hormones for fertility and can impact luteal phase and other things.

Sorry to butt in but I've learned a lot since this diagnosis. Try to be patient with your dosage and testing. It's hard but you don't want to go too fast and get into the hyper realm like I did.

Best of luck to you!

JellyBean616 · June 2011

I was diagnosed with Graves disease when I was in high school. They ran a couple of blood tests, and then I had a radioactive iodine uptake test (I think to see how bad it was), and ultimately I had my thyroid irradiated.

Even though the RE is an endocrinologist, I don't think the thyroid is their "thing". It sounds like you have an appointment with a regular endocrinologist, but I think you can get your GP to do some of the testing.

10-4LilBuddy · June 2011

I was dx about 10 years - had hypo symptoms and confirmed bloodwork with antibodies and an ultrasound. Was on Synthroid and another med. Then my thyroid began to correct itself and I went hyperthyroid for an entire summer - most miserable experience. Now I am off meds and slightly hypo (2.4 range) and have my nodules monitored by ultrasound every year. It's an unusual case but am glad I don't have to do meds any more.

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