Anyone here have thyroid disease, too? | Arthritis Information

Just wondering if anyone here takes meds for thyroid disease, and if so, have you noticed a connection between the meds and increased joint pain?

I have hypothyroid and Hashimoto's, another autoimmune disorder. I had been on synthetic thyroid hormone (Synthroid) and tried Armour (made from pig thyroid glands) a couple years ago and swore it caused increased RA symptoms. I went on Thyrolar, which is supposedly a synthetic, but swore I still had increased joint pain. RD says no, it's the Enbrel wearing off.

Anyway, they stopped making thyrolar and my thyroid doc put me back on a T3/T4 blend made from pig glands and WHAMO instant ramping up of RA pain and inflammation. I stopped taking it and have been having relatively good days. Two RDs and the thyroid doc tell me there is no connection between pork or thyroid meds and joint pain. My body says otherwise.

Probably a shot in the dark, but wondering if anyone here can confirm. All I can find on web searches is that untreated thyroid conditions cause joint pain, but my treatment caused some more. Oh well!

There is a well-documented connection between autoimmune arthritis and autoimmune thyroid. I have them both. What's worked for me for years is Levoxyl [synthetic T4 only]. I've also used Synthroid [also synthetic T4] for many years with success.

Drugs such as Synthroid must be used in a body that is able to convert T4 to T3. Presumably you are given the "real deal" drugs [Armour] because your body may not convert T4 as it should. Just guessing.

But your question was really about pain increase. There is a website that lists all patient complaints for medications. Suggest you look up the various thyroid meds and see if there are any statements by patients that refer to pain escalation. There is one posting that reads:

These symptoms are usually caused by hypothyroidism, but Synthroid did nothing to help. Those who have this condition should demand Armour Thyroid. It is natural hormone that is getting harder and harder to find. After being on Synthroid for 2 years, I begged my doctor for an alternative. He prescribed Armour, and I felt better after 2 days! I have been on it now for years and have since lost 50 lbs, no hair loss, nor brain fog! I still have some joint pain but it is much more managible.

http://www.askapatient.com/

The individual who wrote it left an email address.

We all need to remember that even with the best of RA drugs, pain seems to have a mind of its own.

I am hypothyroid, I was diagnosed about 10 years ago, at least. I take levothyroxine.

I had read that it can be connected with RA too but strangely enough the doctor I was seeing never made the connection or at least never mentioned it to me. I have decided to see a new rheummy the first of the year.

Lori

I also have Thyroid disease. I take Synthroid (sp). I have no side effects from the drug.I have discovered I am not taking it as effectively as I could, it appears we are to take the med on an empty stomache and I have for years taken it with food. I am sorry you are having these problems and I hope you find a resolution soon.

Lisa

I had some tests done and I was in the high end ( TSI ) of normal for Hyper ThroidThank you so much for the responses everyone. I do need a T3/T4 combo. Wow I was unaware of that Askapatient website, thank you Sam! I will check it out.

That "Ask A Patient" website has been around for years and is definitely a keeper. You can sort the information by the highest or lowest ratings. I like to sort it by lowest ratings and then read the complaints about the drugs.

You have to use it in context. People who are using a medication successfully and without side effects probably won't take the time to post. So don't be put off by average ratings. You're bound to have more dissatisfied people posting than satisfied.

That's a good point Sam, that satisfied customers won't take the time to rave. I started the Levoxyl and Cytomel this a.m., so far so good. Pork thyroid had me crippled up within six hours. Green-Tara,

I'm really glad you mentioned this because I've been having some TSH problems lately and when I read your messages about non-synthetic drugs, I wondered if that's what I needed. [The vampire just took lots of blood yesterday. We're getting to the bottom of my problem.]

One thing for certain: my body is so senstive to any foreign invader. Seriously, it goes into attack mode, which is the worst thing for us.

I've been on Levoxyl for many, many years with wonderful results...until very recently. I am almost certain it's not the Levoxyl, but rather some other problem going on [diabetes or Vitamin D deficiency]. You know how it is: when one thing goes out of whack.......it's like the domino effect.

Sam, As we age it's gets a little harder for the thyroid meds to keep the blood levels stable. I was having a really difficult time with high and low and it took about 6 months to regulate. My endocrinologist said to expect some changes in thyroid levels as I get older. We're doing thyroid tests every 6 months or when I feel the symptoms present themselves. Must have to do with the auto-immune system aging. LindyLindy,

Indeed....with age comes body resistance to meds. And triple that when dealing with autoimmune diseases. My thyroid tests are run every three months so I've got records for over 20 years. I was stable for so long.

It's ironic, but if you really want to exercise your brain, consider that all my latest thyroid problems began right after I got a Tdap [tetanus, etc.] booster. I know, it doesn't make sense. It's almost like my body didn't like the Tdap and blasted the foreign invaders all over the place.....but not before triggering changes in my glucose levels, etc. Another thing that happened right after that Tdap shot was that my Vitamin D suddenly went haywire and plummeted. Calcium, however, is perfectly fine, as are all the other minerals.

Bummer.

I almost can understand the change in your glucose levels but the start of the thyroid problem/s is unusual. After years of bizarre and unusal medical problems I've come to the conclusion that the scientist and medical doctors don't know as much as we think they do about how drugs affect our bodies or even how RA affects our bodies. The crap shoot game just keeps getting bigger with more players and my odds diminshing. Lindy Lindy,

I totally agree.....I believe we're in the Dark Ages in terms of how much scientists know about diseases and their connections to each other. But I also think that since the Genome Mapping and the advent of new technology that some great things are going to be discovered in the next ten years. I think there's a lot to be hopeful for.

Sam, I fully believe the tetanus booster could have thrown your immune system out of whack. When my RA first went into remission, I felt good enough to continue college at night, after working all day. They made me get an MMR (measles, mumps, rubella) booster before continuing night school and my RA came raging back. I ended up with a fused wrist on the arm that was the injection site.

Have you had your D levels tested? My good RD was fanatical about my D levels.
Green Tara:

Thanks for letting me know your experience about the MMR vaccine and the return of your RA. Every doctor I've spoken with says "no way" but then, nobody knows my body like I do. I KNEW I wasn't the only one with this adverse reaction.

Vitamin D: Funny you should ask. Since the Tdap booster everything has gone haywire, including the Vitamin D.

Normal range is 31-100

Tdap on 2008-01-31

Vitamin D tests:

2008-02-28: 43.6

2009-09-10: 28.4 [below normal]

2009-12-03: 20.8 [below normal]

On 2009-09-17, because I was still in the normal range, my endocrinologist opted to prescribe 400 IU Vitamin D twice daily. You can see from the results on 2009-12-03 that it didn't help. I saw her again on 2009-12-10 and this time she Rx'ed 50.000 IU once a week for each of 8 weeks, then 50,000 once a month. We run bloodwork once every three months.

Did I mention that 4 days after the Tdap [which was in the shoulder area] I swelled up like an elephant from my waist down? Badly. Really badly. My RD said it wasn't related to the shot, FDA said it wasn't related, other doctors said it wasn't related. I KNOW it was related. Only lots of loop diuretics for almost two months flushed it out of my system. In the interim, I flared in multiple joints and new joints and only hefty doses of Kenalog in the joints resolved that.

It also introduced Cricoarythenoid Arthritis which is sheer hell. You feel like you're choking all the time. As it turned out, all the injections of Kenalog in the other joints resolved that.

I didn't get the regular flu shot in the fall of 2008 - I figured my body had been through enough. However, I DID get the flu shot in September of this year. I've never had reactions to flu shots before, but after the one a couple months ago, I've had some flare-ups in new joints. Related to the shot????? I'm thinking so.

My RD was never into Vitamin D levels, but after my experience he is. [Though it's my endocrinologist who is adamant on the Vitamin D.]

I also have thyroid disease. Was diagnosed with Graves Disease at 17, had most of thyroid removed. I am currently taking levothyroxin. The year before i was diagnosed with RA my thyroid went way out of wack was up and down. Stefanie,

Like you, my autoimmune arthritis was diagnosed just a year after the thyroid problem.

Same here. One year after hypothyroid diagnosis, RA. Lucky for me, both are quite mild, so far. However, I believe I may have another mild autoimmune disorder to make it a trio: Ocular myasthenia gravis. I've noticed a slight drooping of my left eyelid for several years, gets worse when I am tired, and seems to be more pronounced now than it was a few years ago. No doctor took it seriously enough to look further than a chest Xray, which was normal. But it is beginning to bother me, and I am not sure where to go for further tests. Anyone?

Nancy, is there a good ophthalmalogist in your area? Can your RD refer you? If it is in the branch of autoimmune diseases I would think your RD and eye doctor should be involved. good luck with that - jeez, you would think one AI disease would be enough for a body, it seems like they enjoy inviting others to the picnic - in which the feast is us. :(

Sam, it takes 2,000 to 3,000 mg. daily of vit. D-3 to keep me in normal ranges. It sounds like a lot but even my GP and endo say those are the new guidelines.

I don't understand why doctors say "nope, couldn't be that" when we experience issues like what you described. It makes perfect sense to me = those boosters and immunizations deal with Immunities, hello? immunizations? Auto-immune disease? Overactive AI system maybe going into hyperdrive by an immunization? That's not rocket science, or so it seems to me.

My endo was also adamant that pork thryroid could not be causing worsened RA symptoms. It's been about a week on the Levoxyl/Cytomel mix and I'm feeling better every day.

PS: I did do more research and found that pork is indeed high in histamines, which can cause inflammation. And who knows what the poor pig went through in industrial farming before his thyroid became ground up powder. It works great for some; just not all of us.Green-Tara:

So that puts you at about 21,00 IU per week.

What's odd is that large doses make the Calcium rise. Have you seen a rise?

It sure would be interesting to know what makes the D plummet. Do you take MTX? [I do.]

I'm glad to hear you're feeling better on the new mix of thyroid meds.

Yes, we have to learn to stick to our guns when we experience something that the doctors tell us is not likely or possible. Like when I went on statins and had unusual symptoms not written about. I went off. I tried three more statins and the same thing. Now you can find tons of literature about rhabdomyolysis. I think we patients need to do a better job of reporting reactions to the FDA rather than assume that someone else will do it.

In the meantime, I wish doctors would clean up their verbiage and say, "There's nothing in the literature that describes your reaction," rather than say, "That's not possible." It irritates me when they do that.

By the way, when I saw the Diabetes educator at the University yesterday and mentioned vitamin D, she said that EVERYONE is suddenly talking about it.