A big fat NO to Tirosint

DebE13 · Post by **DebE13** » Wed Dec 02, 2015 6:12 pm

Well, this is the straw that broke the camel's back. I don't know what I'm doing next but it surely is not sticking with an endo who flat-out is not equipped to handle me as an atypical patient who has been in pain for over two years and not doing well on my current course of treatment even though my labs get a gold star. I tried.... I waited a very long time to get a second opinion from an endo I actually fell in love with but she is out of network and I need a prior authorization anytime I would want to see her and she is 2 1/2 hours away. She agreed that an afternoon dose of cytomel (I take a generic that I believe is MC safe) would be worthwhile given my history. She is also educated in food having an impact on health. So I tried to make nice with my endo and he obliged me begrudgingly and I've been taking a dose at 7 AM and again at 1 PM. I have not seen the results I had hoped but I also believe I should be on a stronger dose than a split 10mcg/day. My FT3 numbers show that.

I've developed muscle and joint pain that is making me want to crawl in a hole and die. I made an appointment with my PCP almost two weeks ago now and she made a referral to a rheumatologist and I have yet to hear from her office but was told that it would take a long time to get an appointment. Great. Today, I sent this message to my endo after doing some long, hard thinking. Thank you Tex, for all of the links you sent me and offering your thoughts on my situation.

"Message:Good Morning,
I recently met with Dr. Abraham about the on-going muscle aches and increased joint pain. She has made a referral to Dr. Bocoun in rheumatology. I was told it may take a while to get an appointment and I've been doing some additional reading on what I've been experiencing. I have struggled with managing my microscopic colitis and numerous food intolerances since 2007 and am wondering if there are ingredients in the levothyroxine that may be causing issues. I would prefer to investigate this possibility before adding any additional medications to lessen the pain. I realize it will require additional bloodwork but I think it is worthwhile.

Would you consider allowing a switch to tirosint to see if that helps? I am hopeful that the tirosint/liothyronine combo will be a good fit for me. If I am wrong, then I will be comfortable in trying alternative medications for additional autoimmune problems."

I received a call this afternoon from his nurse who simply said no additional labs are needed at this time, I should see the rheumatologist first, and doctor feels tirosint will not make a difference. Period. That's it, no more.

I am still fuming at the thought that I cannot even switch brands. I would prefer Armour. I would prefer more cytomel but won't even ask be I know he didn't want me on any of it to begin with. So he is able to decide that my suffering can continue and it is not thyroid related and the burden of figuring it out can rest with another specialty. I don't want to hold a grudge because it is as simple as we are not a good patient/doctor match.

So now I need to move on and it is discouraging to think that I may encounter the same attitude again and again. I plan to call my insurance company about the endo who is far far away but I know it will be a dead end unless I want to foot the bill to see her. I cannot. I have excellent insurance but is has proven to be a double edged sword- I have to stay within the network even though it has proven to cost them a lot more money because I keep getting shuffled around. There are two major clinics in my area so maybe I start searching at the other one. There is also a branch of the clinic 45 minutes away where I had my surgery done that I could try. The campus there is espansive and there is a more diverse population of doctors who are more open to what is new in the medical world.

I spent a couple of days being depressed, a few feeling just plain sick, and now I need to pull up my boot straps and get on with it. I had a brief period of relief, if it can be called that, when I got my period. It is so odd...... my joint pain stopped when I got it and I only had the muscle pains. I was actually quite tickled about it. Now that it is coming to an end my knees are starting to ache. Within the past two years I have noticed that I have aged considerably. I can't help but blame that on my undertreatment.

Maybe there are huge cancer suppression reasons that I am not understanding but when I have thoughts that death would be preferable to drudging along in pain everyday- I don't care what the reason is, I want change because I am not done living yet.

Really, why would one oppose switching brands just to see if it would help? My endo recommended the ThyCa support group to me and that is where I read patient after patient story of living in agony. The neck & shoulder pain is a common complaint among countless other complaints. There are also stories of what works, here and there.... but it seems there are only a few doctors who understand and they do not live in my hometown. It's almost cruel.

ok, rant over. Moving forward is the only option.

Post by **tex** » Wed Dec 02, 2015 8:25 pm

Deb,

Is it possible that you might be entering perimenopause? It's common for both muscle pains and joint pains associated with arthritis to become worse before and during monthly periods. But it can also begin during perimenopause. I don't claim to know anything about this topic, so for all I know, the fact that you are still having periods may totally rule out the possibility of an early stage of perimenopause. You might find the article at the following link to be helpful.

I see many women who notice joint pain for the first time during perimenopause. Although the relationship between our joints and estrogen is not fully understood, it’s known that estrogen has an anti-inflammatory effect in our bodies. It makes sense then that during perimenopause, when estrogen levels start decreasing, women could feel the effects in their joints. Any imbalance that estrogen has been helping to calm may start rising to the surface.

Arthritis and Joint Pain – Inflammation Could Be At Work

So as much as I hate to agree with your endo, it's possible that arthritis might be the problem. But of course it's also possible that as you and I both believe, your aches and pains could be due to your thyroid treatment. It might be necessary to coordinate your thyroid treatment with HRT, but I have no idea who in the medical specialties might be capable of doing that. A skilled rheumy would probably be more likely to be qualified than your endo, is she/he were willing to handle both.

In the meantime, your GP could test your CRP (if he hasn't already done so).

And I agree with you that your current endo borders on a cruel sadist who seems to be on an ego trip, FWIW.

Tex

Hue · Post by **Hue** » Wed Dec 02, 2015 11:21 pm

Deb, I am very sorry that you are going through such agony. If you use Facebook at all, I recommend a Facebook group called "Thyroid Healing Journey". The administrators are caring educated people and who have struggled themselves with thyroid issues. They have loads of information in the "files". Someone in the group may be able to provide a lead on a good Dr in your state. Thyroidnation also has a list of Drs and nurse practitioners who are "patient friendly". http://thyroidnation.com/thyroid-friendly-doctors/

I hope you can find some answers. Never give up!

Post by **tex** » Thu Dec 03, 2015 9:04 am

Hi Hue,

Welcome aboard.

And thank you for posting such helpful information.

Tex

Hue · Post by **Hue** » Thu Dec 03, 2015 7:19 pm

Thank you Tex. I've been lurking for a while doing lots of reading. I appreciate this site.

Hue

DebE13 · Post by **DebE13** » Fri Dec 04, 2015 12:31 pm

Tex,

I don't think there are any perimenopausal issues yet. My periods are still like clockwork. I'm still trying to figure out what to about a new endo.

Hue, thank you for the link. I also read a lot of posts from the ThyCa support group. It's amazing how so many people can be so "stuck" in their treatment plan that isn't working.

So far, I have had to push looking into my vit D, ferritin, and B vit levels. They don't seem to put much worth into them. Boggles my mind why that isn't a starting point.

Hue · Post by **Hue** » Fri Dec 04, 2015 8:36 pm

Yes, sorry Deb. You are more well-read than most Doctors. You just need a Doc to help you. I did get a good tip today that I am going to try for joint pain. It is reported to also help with brittle nails and dry hair too. Great Lakes Collegen in the green can.

Gabes-Apg · Post by **Gabes-Apg** » Fri Dec 04, 2015 8:43 pm

To optimise the absorption and use of collagen there are a few key cofactors

- amino acids (proline and lysine)
- Vit C

using home made bone broth as a foundation can provide all the healing nutrients and co-factors

http://articles.mercola.com/sites/artic ... efits.aspx

The Healing Benefits of Bone Broth

As the featured article states, there are many reasons for incorporating good-old-fashioned bone broth into your diet. The following health benefits attest to its status as "good medicine."

Helps heal and seal your gut, and promotes healthy digestion:
The gelatin found in bone broth is a hydrophilic colloid. It attracts and holds liquids, including digestive juices, thereby supporting proper digestion Inhibits infection caused by cold and flu viruses, etc.:
A study4 published over a decade ago found that chicken soup indeed has medicinal qualities, significantly mitigating infection

Reduces joint pain and inflammation, courtesy of chondroitin sulphates, glucosamine, and other compounds extracted from the boiled down cartilage
Fights inflammation: Amino acids such as glycine, proline, and arginine all have anti-inflammatory effects. Arginine, for example, has been found to be particularly beneficial for the treatment of sepsis5 (whole-body inflammation).

Glycine also has calming effects, which may help you sleep better
Promotes strong, healthy bones: As mentioned above, bone broth contains high amounts of calcium, magnesium, and other nutrients that play an important role in healthy bone formation

Promotes healthy hair and nail growth, thanks to the gelatin in the broth

Hue · Post by **Hue** » Fri Dec 04, 2015 9:12 pm

Where's the "Like" button? Hahahha.. Thank you Gabes.