Newcomer with high antibodies

Katt66

Hi folks... I'm new and trying to sort info while waiting for my specialist appointment. I have been diagnosed so far with 'thyroid disease'. I have high antibodies (value over 1000) and nodules on my thyroid. (hypothyroid) When I pressed the dr. for a more specific diagnosis, he refused and referred me to the specialist (who has a very long wait list). In the meantime, he put me on synthroid.

I am expecting to hear I have Hashi's, but am still very nervous about hearing the 'c' word. It's difficult to sort through the info online particularly re: Hashimoto's as there are discussions about 'old school' testing and meds being ineffective and 'new' tests and thoughts which may be valid or may be a scam. My sis-in-law has Hashi's and is on over 200 mg of snythroid with no symptom relief and is a physical mess. Is this my future?..... I've been on 25 mg of synthroid for two weeks now and I feel way worse than with no meds. I am waaaay more tired now, fuzzy thinking, scatterbrained, headaches, and now I can actually feel my thyroid aching and painful, swollen (which I didn't before being on synthroid). Am unsure if it's the synthroid, or if coincidentally, my situation took a nosedive. I'm thinking maybe I should stop the synthroid until I get to the specialist. Thoughts?

In looking at my sis-in-law, it would seem obvious that her meds are not helping her, but her doc has no other help. This can't be my future too ?!? I just want to feel somewhat normal again and actually be able to lose weight. Nervous about hearing a cancer diagnosis and frustrated with the apparent lack of effective help on Hashi's......

Any thoughts?
Thanks, Katt

alapah

Hashis
Hi Katt,
Most people on this board have no thyroid as the entire organ is removed in most cases of thyroid cancer so it may be tough getting answers to your Hashis treatmetn questions. That said, I suppose some may have been treated for Hashis before they were diagnosed in which case they may be able to answer some of your concerns. It turns out I was living with undiagnosed Hashis for some time prior to my thyca diagnosis but my TSH was always within normal range and felt ok so there was no reason to test for antibodies.

I am assuming that you have only seen a general practitioner and that the specialist you will be seeing is an Endocrinologist? Before stopping any med, I'd recommend calling the doc and explaining what is going on. Also, it's very important to understand that it takes six weeks for synthroid to build up in your system. If you've only been on it two weeks it's not long enough to make a significant difference I'd think. The symptoms you describe actually remind me more of the effects of hypothyroidism (underactive). If you've noted significant changes as described, you really should speak with your doctor.

How long is it til you see that specialist? An endocrinologist can have you undergo an ultrasound (maybe you did that already as you seem to know you have nodules) and they can actually do a fine needle biopsy of the nodules if they are of a certain size. The composition of nodules as viewed on the ultrasound can also be helpful in determining what is going on, but only in a general sense. Fine needle biopsies can give false negatives so often the only way to truly know if it's cancer or not is surgery and pathology post-surgery. Here I am telling you this but really the first sound step will be to see an endocrinologist who knows about treating Hashis and is up on thyroid health (some endos are really up on thyroid cancer too, but not all). I know it's hard but try not to jump into the cancer concern at this point.

Call that doctor and let him/her know that you are feeling worse.
Best to you Kat.
eileen

Katt66

alapah said:

Hashis
Hi Katt,
Most people on this board have no thyroid as the entire organ is removed in most cases of thyroid cancer so it may be tough getting answers to your Hashis treatmetn questions. That said, I suppose some may have been treated for Hashis before they were diagnosed in which case they may be able to answer some of your concerns. It turns out I was living with undiagnosed Hashis for some time prior to my thyca diagnosis but my TSH was always within normal range and felt ok so there was no reason to test for antibodies.

I am assuming that you have only seen a general practitioner and that the specialist you will be seeing is an Endocrinologist? Before stopping any med, I'd recommend calling the doc and explaining what is going on. Also, it's very important to understand that it takes six weeks for synthroid to build up in your system. If you've only been on it two weeks it's not long enough to make a significant difference I'd think. The symptoms you describe actually remind me more of the effects of hypothyroidism (underactive). If you've noted significant changes as described, you really should speak with your doctor.

How long is it til you see that specialist? An endocrinologist can have you undergo an ultrasound (maybe you did that already as you seem to know you have nodules) and they can actually do a fine needle biopsy of the nodules if they are of a certain size. The composition of nodules as viewed on the ultrasound can also be helpful in determining what is going on, but only in a general sense. Fine needle biopsies can give false negatives so often the only way to truly know if it's cancer or not is surgery and pathology post-surgery. Here I am telling you this but really the first sound step will be to see an endocrinologist who knows about treating Hashis and is up on thyroid health (some endos are really up on thyroid cancer too, but not all). I know it's hard but try not to jump into the cancer concern at this point.

Call that doctor and let him/her know that you are feeling worse.
Best to you Kat.
eileen

newcomer
shoot... looks like my post vaporized and didn't actually post. I will try to remember what I just did... lol.

Thanks Eileen for responding. I did see an endo a couple years ago who had the ultrasound reports and did nothing further, said everything was fine. (but my symptoms weren't) I recently went to a second endo for tests as my symptoms are worse, and he found some values he didn't like, the antibodies specifically, and referred me to a third endo. Apparently this third endo specializes in thyroid disorders exclusively. This is the guy I'm waiting on. My appt. is in Oct. unless I can fill a cancellation earlier. In the meantime, the second endo put me on the synthroid. I'm kinda stuck inbetween not being able to ask the new guy questions, and the other one not being able to answer the questions.

When I pressed the second endo for his opinion, the only thing he would say was 'thyroid disease' and referred me to the third guy. I am nervous about the way he avoided my cancer questions as I expected that if it were Hashi's he would just say that and refer me to the other endo for second opinion and management anyway.

So, I came in here to learn more about thyroid cancer, asking the right questions, getting the right tests, meds, etc. It seems that synthroid is the 'it' drug for both Hashi's and after surgery requirements. Although it also seems, that like the Hashi's boards I've been reading, you guys are not very satisfied with the synthroid either. Not losing weight and just generally not feeling better seem to be common complaints for both diagnosis, as well as managing side effects of the synthroid. I have had little success in losing weight and am anxious about that as other cancers can be linked to being overweight as well. Not to mention just feeling yucky all the time.

I'm trying to sort out if my recent symptoms are a result of being on synthroid and will pass, or whether I really did get worse. What was your experience with starting synthroid? I was on armour occasionally in the past and didn't have these issues. I've never been able to feel or even notice my thyroid before and whoa, I do now. Like I mentioned before, my sis-in-law has been on synthroid for quite awhile and has had NO relief from her symptoms, and obviously, I wonder why. Why doesn't it help, and why doesn't the doctor do something else? Is there something else? Geez, is this my future? All the patients wants to feel and do better, but it seems the medical side is good with the status quo and not really making progress.... true or no?

I realize synthroid is required after thyroid removal, but do you think synthroid has a better effect on persons w/o a thyroid than with? How do you feel? Seems like both Hashi's and cancer survivors have the same complaints on managing symptoms and meds.

I expect to have a new ultrasound and probably, as you say, a fine needle asp. as well as more blood work. This guy is supposed to be the thyroid guru, so we'll see. I'm nervous about hearing cancer, but I want to be prepared to ask questions because of the nodules. Maybe it's not cancer now, but it could be later, yes?

Thanks for your thoughts,
Katt

alapah

Katt66 said:

newcomer
shoot... looks like my post vaporized and didn't actually post. I will try to remember what I just did... lol.

Thanks Eileen for responding. I did see an endo a couple years ago who had the ultrasound reports and did nothing further, said everything was fine. (but my symptoms weren't) I recently went to a second endo for tests as my symptoms are worse, and he found some values he didn't like, the antibodies specifically, and referred me to a third endo. Apparently this third endo specializes in thyroid disorders exclusively. This is the guy I'm waiting on. My appt. is in Oct. unless I can fill a cancellation earlier. In the meantime, the second endo put me on the synthroid. I'm kinda stuck inbetween not being able to ask the new guy questions, and the other one not being able to answer the questions.

When I pressed the second endo for his opinion, the only thing he would say was 'thyroid disease' and referred me to the third guy. I am nervous about the way he avoided my cancer questions as I expected that if it were Hashi's he would just say that and refer me to the other endo for second opinion and management anyway.

So, I came in here to learn more about thyroid cancer, asking the right questions, getting the right tests, meds, etc. It seems that synthroid is the 'it' drug for both Hashi's and after surgery requirements. Although it also seems, that like the Hashi's boards I've been reading, you guys are not very satisfied with the synthroid either. Not losing weight and just generally not feeling better seem to be common complaints for both diagnosis, as well as managing side effects of the synthroid. I have had little success in losing weight and am anxious about that as other cancers can be linked to being overweight as well. Not to mention just feeling yucky all the time.

I'm trying to sort out if my recent symptoms are a result of being on synthroid and will pass, or whether I really did get worse. What was your experience with starting synthroid? I was on armour occasionally in the past and didn't have these issues. I've never been able to feel or even notice my thyroid before and whoa, I do now. Like I mentioned before, my sis-in-law has been on synthroid for quite awhile and has had NO relief from her symptoms, and obviously, I wonder why. Why doesn't it help, and why doesn't the doctor do something else? Is there something else? Geez, is this my future? All the patients wants to feel and do better, but it seems the medical side is good with the status quo and not really making progress.... true or no?

I realize synthroid is required after thyroid removal, but do you think synthroid has a better effect on persons w/o a thyroid than with? How do you feel? Seems like both Hashi's and cancer survivors have the same complaints on managing symptoms and meds.

I expect to have a new ultrasound and probably, as you say, a fine needle asp. as well as more blood work. This guy is supposed to be the thyroid guru, so we'll see. I'm nervous about hearing cancer, but I want to be prepared to ask questions because of the nodules. Maybe it's not cancer now, but it could be later, yes?

Thanks for your thoughts,
Katt

Synthroid
I have had no issues being on synthroid - and my doc requires name brand because synthroid seems to have a more consistent and stable composition than generics. Although i have done well on Synthroid i am aware others have not been so lucky. It is possible that you don't process Synthroid that well. If i remember correctly, it is a T4 drug that converts in the body to a more readily available T3 form. When people have trouble converting it, docs sometimes offer a combination of T4 and T3. A commonly prescribed T3 is Cytomel. I am not well versed in that though, as i have never been on a T3. It does help some tremendously from what ive read. In order to get a real understanding of what is going on, the doc needs more than kust a TSH reading. My endo orders a free T4 with mine, for example. There is also a lab to test free T3.

My understanding about Hashis is that the condition has a tendency to produce nodules and those nodules can become cancerous. This is why folks known to have antibodies/Hashis are monitored regularly with ultrasounds.

Glad to hear that you'll be seeing someone that specializes in the thyroid. Hopefully they are good with people too - informative and willing to have a conversation with hou to answer all of your questions.
E