OT--Thyroid Answers, finally! | Arthritis Information

Sort of. I appreciate doctors who are honest but it's frustrating to have them say "I'm not sure what to do with you." This happens to me a lot! Anyway...

TSH has been betwen 1-2 twice in the last 6 weeks. But I've had spells of hyper/hypo symptoms. May just be hormones or RA. Have not had T3 or T4 run. Thyroid has been inflammed and tender all this time, and it's hard to swallow and bugs me in certain positions. Can't wear turtlenecks. Thinking back it's been like this before.

Endo was sure that my uptake would be 0 and I would be easy dx of subacute thyroiditis. But it was 24%, which is normal. It was 35%, a high normal, 6 weeks ago. All my thyroid antibodies, etc. were negative. Edited to add that the scan showed "diffuse nontoxic goiter". I don't think it's super big but definitly larger than normal.

Endo is thinking RA drugs (once they work) may help this inflammation. He suggested wait and see as one possibility but more strongly urged using thyroid hormone to turn off my thyroid and let it calm down. So I'm going on 75 mg/day of Levox with instructions to call if I get insomnia, etc. to adjust the dose. TSH rechecked in 6 weeks and 3 months with an appointment at 3 months. He tried to call my local RD to consult but he doesn't work on Mondays, go figure.

I think he thinks I have recurrent thyroiditis, but I don't think he's sure. I'm not sure how I feel but I'm hopeful this will make me feel better and maybe has something to do with my high CRP and that will go down with treatment. I'm not happy at another scrip copay but I am THRILLED that I have no more doctor's appointments until early February! You have no idea how happy that makes me. So now when I take time off of work or over lunch I can see my family instead of a doctor's office! It's been incessant recently. I've gotten neurotic about things because I'm constantly at the doctor so it's hard to keep it at bay.

I have a gut feeling that I may need a second opinion in time, esp. since he's baffled by my combination of signs, symptoms, and lab/uptake results, but I'm happy for now that at least I have something to try!

KatieG2008-12-15 13:35:08Keep thinking of more things to say. I think part of his reasoning is that it shouldn't be this bad since I'm on 15 mg mobic a day, which is something they would use to treat it. And it's still inflammed....he had previously discussed a pred taper pack but I'm glad not to do that, I always flare after.Sure hope this is your answer and the meds work! Keep us posted!Call him back and ask for SAMPLES....He should have plenty in his office...I get Samples from my doc all the time. If this doctor doesn't have them call and ask your family physcian.

I would do it in a heart beat. Especially a new med.

Lisa

Katie,

Your levothyroxine shouldn't be that much. If I remember correctly, the drug is only slightly more than my copay. It's also available on the prescription plan at Walmart.

I should have, and may have to do that! Although it is 30 minutes away, out of my way. But if they have to adjust my dosage, I may have another copay!He said that brand vs. generic matters with thyroid meds and prescribed Levoxyl. It may only be , I will have to see. I have a PPO with 10/30/55 for Tier 1/2/3...let's hope for Tier 2, not 3! :)

Correct Kweenb, Also Kroger Pharmacy, Try to remeber to ALWAYS ask for samples, the worst they can say is no.

I get all my Vytorin fro my doctors office, It is my most exspensive drug (besides Betaseron) The vytorin samples save me about .00 a month.

No copay worries for synthroid, Walmart $ 4.00one more thing synthroid worked really quick for me. I hope the same for you.I hate going into Walmart, I am always rushed for time and that is not the place to go. But if it would make it that much cheaper I will definitely look into it! Thanks for the heads up! :)My Levoxyl copay is only , I guess it just depends on your insurance??So I got it filled at CVS and it was only . But it was a generic, and it had an "action note" that CVS had determined/decided/acted and filled generic instead of what was prescribed (brand). So apparently my doctor thinks that its important that its brand. But that would cost me more a month (couldn't get brand at Walmart for ). So I left a message with his office. I am just going to start taking the generic and let them convince me it's a big deal since the pharmacist doesn't think so. I am SO exhausted tonight that I just want to start taking it ASAP to see if I can't have some more energy to work this week. Katie,

I take the generic brand. I have all along. It seems to do the job just fine.

Lisa

I sincerely hope this works for you, Katie!!

best of luck.

Hi Kate, has anyone mentioned a fine needle aspiration of thyroid to pinpoint diagnosis? Have you had a scan and what did it show? You might want to consider not taking the thyroid meds until the endo has consulted with the RD. Just some suggestions. Lindy[QUOTE=LinB]Hi Kate, has anyone mentioned a fine needle aspiration of thyroid to pinpoint diagnosis? Have you had a scan and what did it show? You might want to consider not taking the thyroid meds until the endo has consulted with the RD. Just some suggestions. Lindy[/QUOTE]

Just curious, why would she doubt her endo? I mean if her thyroid is bad synthroid is a easy fix. Is there a reason her RA doc would not want her to take synthroid?

Thyroid symptoms is quite debilitating. I had a scan, I thought it was for screening for cancer, My TSH was really high, the synthroid corrected it rather quickly.

[QUOTE=KatieG]So I got it filled at CVS and it was only . But it was a generic, and it had an "action note" that CVS had determined/decided/acted and filled generic instead of what was prescribed (brand). So apparently my doctor thinks that its important that its brand. But that would cost me more a month (couldn't get brand at Walmart for ). So I left a message with his office. I am just going to start taking the generic and let them convince me it's a big deal since the pharmacist doesn't think so. I am SO exhausted tonight that I just want to start taking it ASAP to see if I can't have some more energy to work this week. [/QUOTE]

Katie,

I'm shocked the pharmacist substituted the generic. Usually, there's a notation on the prescription that says "do not substitute" and I'll bet your endo noted that if he specifically told you to use the brand drug. Did you talk to the pharmacist about this or did you just notice it when you got home?

kweenb-I had a pharmacist do that to me recently, and I've been taking name brand levoxyl for 3 years. I marched back in and told them they had to redo it. The pharmacist was all, "Your insurance wants generic whenever possible." And here's the thing-Katie this is the deal with thyroid meds-it's not that the generic is bad, but you need to stay with the brand you have started. There can be quite a bit of difference between brands and the amount of hormone. Luckily an older pharmacist overheard and supported me.

IO, In earlier replies Kate said that she had thyroiditis, hyper and hypo symptoms at different times and the endo hasn't reached a definitive diagnosis. The endo tried to consult with her RD (not in office on that day) but gave her an RX for meds. All in her previous posts.

It isn't a matter of doubting her endo, it's a matter of the two doctors consulting before she starts another medication that may or may not help according to her endo (also in her other posts.)

Yes, I know very well about thyroid symptoms. She has thyroiditis according to the endo. Her TSH is normal, not very high like yours or mine when we were diagnosed. The meds corrected ours very quickly but Kate's diagnosis is different than ours and the medication will affect her and work differently for her. In the long run it may make her feel better but it will affect her in a different way.

I also know that in her type of diagnosis that a fine needle aspiration is done sometimes and I was curious if it had been suggested.

It certainly isn't out or the ordinary realm to have your doctors consult. It's a very good idea. Also, it never hurts to ask questions regarding diagnostic tools for all levels of treatment. Lindy

Katie, good site for info on the differences between brand and generic.

whttp://www.thyroid.org/professionals/advocacy/04_06_24_fda.htmlant

[QUOTE=LinB]

It isn't a matter of doubting her endo, it's a matter of the two doctors consulting before she starts another medication that may or may not help according to her endo (also in her other posts.)

I also know that in her type of diagnosis that a fine needle aspiration is done sometimes and I was curious if it had been suggested.

It certainly isn't out or the ordinary realm to have your doctors consult. It's a very good idea. Also, it never hurts to ask questions regarding diagnostic tools for all levels of treatment. Lindy

[/QUOTE]

Ok, thank you. I was just concerned by the suggestion to not take the meds her doctor prescribed. I thought maybe you were in the medical field and I missed something.

I appreciate the reponse.

Best Wishes,

lisa

Thanks everyone. I understand what you meant Lisa. Part of my (poorly reasoned) reaction is that there are ALWAYS drug reps in his office when I'm there. Okay, I've only been there twice. But both times there was one coming, one leaving. He treats a lot of diabetes and I guess there are a lot of supplies and stuff that go with that.

But my brother in law and dad are both on the brand too (although they are on Synthroid).

Apparently my doctor said brand, and wrote Levoxyl, but signed the "substitution allowed" side of the prescription. And there are rules now (FDA? Pharmacy? Insurance?) that unless the doctor writes "brand only" and "no substitution allowed" then they must fill generic.

I think this is an insurance thing that I got an email about. If your doctor insists on brand they will pay but he must insist. Maybe the pharmacies were taking advantage, I don't understand the reasoning.

So the doctor called and said I needed to be on brand and I had to take it up with the pharmacy, the pharmacy still had the scrip and said "He signed the substitution allowed side," so I leave another message for the doctor, the nurse calls back and asks what dose (wouldn't that be in the chart?) and says she'll call it in right away. But then I call the pharmacy tonight and they haven't received the prescription or other communication. So I have to deal with it again tomorrow. Blarg!

I know the dosage thing is an issue but my TSH is normal so it's all bizarre to me.

I am going to take the brand even though I will now pay 0 a month for scrips. I guess I'm lucky that 6 of them are only each!! I could go to Walmart and save some, but not many of mine are covered and I get so overwhelmed at Walmart.

KatieG2008-12-16 19:11:11

Thanks for posting the article LinB! Makes me feel much better about the extra !

As for the FNA: I have 4 nodules, but none of them are more than 1 cm in diameter. Their characteristics on u/s were benign. And I've had 2 uptake scans and I guess the uptake was diffuse and none of the nodules were hot or cold or what not. So I guess I'm pretty comfortable at this stage but may get a second opinion on that too depending on how things go. But it's my understanding that they would have been hot or cold if cancerous?

I have heard from hikinggal, that it can be problematic if I get hyper again. But I have read some things today that make me feel a bit better. I did read that hashi's can have normal or high uptake sometimes, like i did, but 95% of people have an antibody that i tested negative for. Par for the course with seronegative RA. In the back of my head too is my father's pituitary problem. His thyroid problems hit around age 40 (I'm 30) and adrenal issues not until 60.

I think the only thing that really bugs me is that he didn't order T4 to rule out a pituitary problem. My uptake was high normal but I don't understand if that would have been definitely low or high if my T3 or T4 were low or high. KatieG2008-12-16 19:17:45Katie, Let us know how things work out for you. You have recieved alot of good advice and support, gleen what you can from it.

Best Wishes,

Lisa

Thanks, I appreciate all the info I have received here! I have tried to do the thyroid boards too but I just don't have enough time to keep up with 2 boards!

Also I think the reason that the endo wanted to consult with my RD is that he feels the thyroid inflammation is directly related to the RA and/or maybe the Arava will help it. I think he was really interested in seeking if the biologic would help it but RD decided Arava first, which is so fine with me, I am so overwhelmed with medical stuff right now.

Edited: my brain is slow tonight. It is occuring to me that FNA could be used to confirm if it is Hashis, subacute, bacterial, Graves, etc., etc. He hasn't gone there yet. I don't know why and don't really want a needle in my neck. :) In time I realize we may need to pin this down.

Also I keep rambling and b*tching about pituitary problems and keep forgetting that those wouldn't cause inflammation. So that would be a separate thing if it's even there.

KatieG2008-12-16 19:35:28Katie, my thyroid problems started with pituitary issues. I went through all the tests, scans, blood, biopsy, etc. and still ended up on thyroid meds. My pit has always been slow and/or sluggish and now due to Pred. use doesn't work at all. Anyway, it may or may not be your pituitary and I think the treatment is the same. Take your meds and you'll start feeling better very soon. Am glad you chose brand over generic for the thyroid meds. Most of the time it doesn't matter too much but with this type of med it does.

Lindy

IO, yes, I was a surgical nurse for 16 years, specialized in neuro and thoracic surgery and then worked in invitro fertilization for several years. Lindy

Katie, sorry to pick this up days after first posting. I presented with painful thyroid, about 9 years ago. Felt something was growing in it, difficulty in swallowing. Had a needle stuck into lump but nothing could be drawn. Scan taken showed a lump the size and shape of a small egg on the right side of my thyroid. I was within weeks booked in for surgery where they took away the right side of the thyroid and the lump which turned out to be a cyst.

I was only put on levo. thyroxine about 4 years ago, mainly because I was sleeping for about 13 hours a day. I was given a bottle of pills 25mg and told to take one a day for a week, if I still felt tired, take 50 for the following week and so on. I take 75mg a day, this keeps me alert and awake until bed time and functioning well. It had an amazing effect on bowel movements too (sorry for the detail, but having been constipated for life, it was a novelty to need to go daily as opposed to weekly).

My TSH is always very, very low ranging between .22 and the highest .87 (the normal range here in Scotland is .2 to 4.5) and since being on the 75mg a day my T4 is 15 (range is 9 - 21). This seems to work for me but we're all different and we all require different amounts of whatever we're taking.

My son has unfortunately inherited a comatose pituitary and thyroid gland. He needed growth hormone to make him grow and he takes 175mg a day of levo. His ranges of TSH and T4 are spookily the same as mine.

We both feel great being on the levo, so hang in there. It seems to me that so many people with RA have thyroid issues that some serious research should be done to see if there is a link.

I just hope that I havent given my boy RA problems too, somewhere down the line.