Thyroid And Lupus Testing

[bartfull]

I hope I put this in the right section.

 

As most of you know I have no insurance. Well a good (dear sweet) friend has offered to pay for lab tests for me.

 

According to Dr. Google I have a lot of the symptoms of hypothyroid - wrist pain and numbness, hip and shoulder pain, thinning hair, lifting nails, fatigue, a NEW rash that looks like eczema, and a few other things I can't think of right now - oh yeah - brain fog!

 

A lot of these symptoms could also indicate lupus, which runs in my family.

 

So if those of you with either condition could tell me which tests I need I will be armed with information when I see the doctor. I really appreciate it.

 

If you'd rather send me a PM than write here that's cool too. Thanks!

[icelandgirl]

Hi Bartie,

I'm sorry about the issues you are having. Not fun. I have Hashi's and these are the tests I'd get:

TSH

Free T3

Free T4

TPOAb

TgAb

The last 2 are antibodies. I don't know about Lupus. Hopefully someone will chime in with that info. If not, I'll email my cousin who has it.

What a lovely friend to do that for you...love it!

(((Hugs))) and hope you feel better soon!

[cyclinglady]

IcelandGirl has nailed it for the thyroid testing. My brother was diagnosed with "Carpal Tunnel Syndrome" but it turned out to be Hashi's like me. His manifests in his wrists. Thyroid relplacement resolved that problem. I do not know anything about testing for lupus (I should since my Grandmother had it and RA and most likely celiac disease too!). I hope you feel better soon!

[mommida]

I'm glad you are going in for testing.  My sister just had to have her thyroid removed from going way to long without having Hashimoto's thyroiditis diagnosed.  Her thyroid (in this case Goiter is the correct term) had grown up into her jawline and down into her collarbone. On one side it was down past that collarbone putting pressure in her chest.  The biopsy came back with cancer cells.  It weighed about half a pound.  She looked great immediately after surgery.  It looked like she had plastic surgery neck lift.  Then as it usually goes some complications arose- low hemoglobin and severe anemia.  She had to stay in the hospital longer, receive 2 blood transfusions, and an iron transfusion.  She is at home recovering slowly.

 

Be persistent with your medical care, and don't let your health decline any where near this situation.  That goiter was crushing her windpipe.

 

This is not the usual course for Hashi's. Usually the thyroid is killed of to a hardened shriveled piece of yuck.

 

Prayers for your Barty for a quick proper diagnoses and speedy recovery!

[bartfull]

Well, my appointment is at 4 o'clock today. And I have no idea how I'm going to pay for all of this. They told me a "simple" office visit is $200 but mine will be more because it will take longer and it's a first visit. Probably around $400. The blood work will be over $600. So it'll end up being over a thousand dollars! Terry said he'd pay for the blood work and the clinic said I can set up a payment plan. Either way I have to do this. I need my hands back.

 

If I lived in Rapid City it would all cost a lot less but I need to establish a relationship with a local doctor, especially because it takes a while to find the right level on the meds. I can't keep closing the shop to run to Rapid. Besides, that's a 120 mile round trip and my car isn't reliable. I'd have to beg a ride from someone.

 

So, anybody got an idea how long it'll take to get the results after they draw blood?

 

Oh yeah, I'm taking a list of my symptoms and also of all the supplements I'm on. Am I forgetting anything?

[icelandgirl]

Yeah Bartie!! So glad you are getting this checked out. If it is thyroid, getting on the meds should help things a lot. And the good news...thyroid meds are pretty affordable.

I just spent the past year getting thyroid blood work every 6 weeks while trying to get to a stable spot. My TSH and Free T4 always come back within a day or 2. Free T3 usually follows another couple of days later. The antibodies took about a week.

Just make sure they do the full thyroid panel on you...don't know why it's so hard to get them to do that but sometimes it is.

Can't think of anything going else but sending you (((hugs))) and good wishes! Let us know how it goes!

[bartfull]

_Thanks.  

 

_{So I went and I really like this doctor. He ordered the TSH, free T3, free T4, and a sed rate. He believes it's very likely that I do have thyroid trouble but he also is pretty sure there is something else going on. Either lupus or psoriatic arthritis or both. Because I have no insurance we're going to start with the obvious first. He said my whole body is full of inflammation and he gave me an antibiotic (Z-Pack, which is gluten-free). Told me to try Advil again to see if I still react to asperin products. (If I got corn and soy back it's likely that I got asperin back) because I need an anti-inflammatory. He suggested I get a ride to Rapid because the lab there is one quarter of the cost here in town. Terry is taking me up this morning. I should have the results by Friday.}

 

 

_{He said a short (one week) course of prednisone would help but I said I didn't want it. He had no problem with that. Said when he was in training a wise doctor told him that patients want to tell doctors what is wrong and the doctor's job is to shut up and listen. So he does. I was in with him for over an hour.}

 

_{I also have highish blood pressure (163/90) and emphysema, but when I told him I had cut down to 5 cigs a day instead of chiding me about still smoking he said he was proud of me and to keep up the good work. All in all, although I'm a bit worried about the lupus and psoriatic arthritis thing, I'm really happy that I have found a good doctor again.}  

[RMJ]

It is always so nice to hear that someone has found a good doctor who listens! I wish it weren't so unusual.

[Gemini]

Bartie..........I don't understand.  Why can't you go through the state medicaid system and get some insurance?  I mean really?  We have a load of people who should not be here and they get free everything and my fellow American doesn't have access to insurance?  I am not trying to make any political statement here either, folks......just stating the truth.  YOU SHOULD NOT HAVE TO GO WITHOUT INSURANCE, ESPECIALLY IF YOU ARE AN AMERICAN CITIZEN!  I realize the system is messed up right now but this just annoys me to no end.

 

Sounds like you have a keeper of a doctor......a compassionate listener.  Those are rare.  Good luck on all testing!

[squirmingitch]

I hope you get it all figured out Barty and that it's not something like Lupus or psoriatic arthritis. I know both of those would really put a cramp (pun NOT intended) in your guitar playing & therefore your living. Thank goodness you got a doc who actually listens!!! Hooray for small wonders.

[bartfull]

Gem, South Dakota is one of those states who chose not to expand medicaid. If I had small children I could get it but I don't. And I couldn't get Obamacare because I make little enough to qualify for Medicaid, if only this state had expanded it.

 

The good news though is that if I'd had the blood work here it would have cost $676. Because I went to Rapid it was only $169. Terry paid it for me and as soon as we got back to the shop I sold a guitar and was able to pay him right back.  I was even able to put gas in his car.

 

Now it's time for lunch - I couldn't get to sleep until after midnight and I was up this morning at 4 AM. Breakfast was at 5 and now I'm starving. Just downed a bunch of coffee so I can stay awake 'til closing. When I finally get home tonight Patches and I will be going straight to bed.

[icelandgirl]

Bartie...I'm so glad you like your Dr! He sounds really great. Wonderful too that he helped you get blood work done for less. Some of it can get ridiculously expensive. I hope your results come back quick!

[Gemini]

Gem, South Dakota is one of those states who chose not to expand medicaid. If I had small children I could get it but I don't. And I couldn't get Obamacare because I make little enough to qualify for Medicaid, if only this state had expanded it.

 

The good news though is that if I'd had the blood work here it would have cost $676. Because I went to Rapid it was only $169. Terry paid it for me and as soon as we got back to the shop I sold a guitar and was able to pay him right back.  I was even able to put gas in his car.

 

Now it's time for lunch - I couldn't get to sleep until after midnight and I was up this morning at 4 AM. Breakfast was at 5 and now I'm starving. Just downed a bunch of coffee so I can stay awake 'til closing. When I finally get home tonight Patches and I will be going straight to bed.

I have learned that if you shop around, there are affordable tests to be had.  The labs that charge exhorbitant amounts will be used less often so it doesn't benefit them to price gouge.  There was also a piece on a news program that basically told people without insurance to negotiate a price because with the way insurance is going in this country, they are willing to barter on the price.  Why not? That's how the free market is supposed to work.  I am not one to run off to a doctor all the time either but they come in handy when you need them from time to time.

 

I am happy you had your testing and sold a guitar! Now get some sleep........you work too hard! 

[Celiacandme]

Bartful - It sounds like you really like this doctor - yay! Have you heard any results yet?

 

If they suspect lupus some tests that CAN BE associated with lupus are PT, PTT, DRVVT, Hex Phase Phoso Neut, and they'd want to run your complement levels (C3, C4, perhaps others). C3, C4 could indicate disease activity in your body but do not specifically mean lupus. Before these tests or at the top of the blood work list they usually run your ANA and some antibody levels. (there is a list of them between 7-10) They do not all mean lupus; some could indicate a possibility of a different rheumatology disease but one that they'd check called anti-dsdna is fairly often seen in lupus patients. Lupus is hard to diagnose so if any of the above are positive that does not necessarily give you that diagnosis. Also ANA indicates inflammation in your body and many have positive ANA's bc of numerous different autoimmune diseases. Keep us posted. I hope you are feeling better soon and have answers soon on your thyroid and sed rate.

 

Oh and the rash that looks like eczema - does it come and go or stay for quite some time?

[bartfull]

I've been out of commission for a couple of days due to computer issues. (I have a very small metal fan above my computer. It fell on Sunday and when I tried to catch it it bounced off my laptop's screen.  ) Anyway, I am borrowing a friend's until I get a new one.

 

So I got the results back. It is NOT thyroid. The doctor believes I have lupus, and he also believes I have psoriatic arthritis.

 

OK, if I can't play guitar anymore I can accept that. Most people never get to play guitar. I got to play for 50 years. It'll hurt financially if I can no longer give lessons but I'll get by. And I know that if the Lord doesn't want me to play anymore He has something else in mind for me. It would be pretty hypocritical of me to ask every day that He make me a tool in His hands and then to turn around and rail about my fate. So I rejoice in whatever He wants me to do next.

 

But I have to admit it's frustrating. Not the guitar thing, but the LITTLE things - like not being able to open a jar or turn the knobs on a faucet, or open a box, unplug something. It's frustrating not to be able to lift a coffee cup by the handle. It's tough to drive because turning the steering wheel hurts.

 

But I'll learn to live with it. And I will thrive.

[squirmingitch]

With an attitude like that You WILL thrive Barty. You go girl!

[icelandgirl]

Aww...I was really hope thyroid for you because the medication would help. I'm bummed for you but as usual I'm so impressed by your attitude! You're awesome! Have you tried the gin soaked raisins yet by any chance?

[bartfull]

Yes, I've been on the raisins for almost six weeks. They say sometimes it takes up to eight so I've got my fingers (metaphorically) crossed.

 

And I have some good news! Sunday when I broke the computer I was angry and sad. Then yesterday after the bad news from the doctor I was pretty teared up all day. But this morning when I got my mind and heart around it all I got my attitude straightened out. And I truly believe that is why God sent my friend Carol in today. She did NOT know about my computer accident but she knew my computer was really old. Her husband had a brand new laptop with Windows 10 and he doesn't like it. He bought a Mac instead and they decided to GIVE me the other one!!

 

I am SO BLESSED!!!

[squirmingitch]

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy!!!!!!!!! 

What's that about closing a door but opening a window? ;-)

[bartfull]

Closing a Mac and opening Windows?

[squirmingitch]

       

[nvsmom]

LOL  

 

I'm late to this Barty, but I was wondering what your test results actually were?  I had my subclinically hypothyroid tests brushed off with a "normal" for a few decades.  Once my tests were finally abnormal enough for the doctors to admit something was wrong, my thyroid was barely functioning - my tests did not reflect that fact though.

 

Your TSH should be close to a 1, like a 1.3 or 0.7.  The free T4 and free T3 should be in the 50-75% range of your lab's normal range.  If it is in the bottom half (especially FT3) you may need it higher. For example, when my TSH was at 14, my FT3 was at the 10% spot within normal; when my TSH was 2 something (and I felt the same as at 14) my FT3 was at about 15% of normal.  Now that my thyroid is being optimally treated, my FT3 is at about 70% - the sweet spot for me.

 

I had a lot of inflammatory arthritis in my hands, shoulders and a bit in my elbows up until I had been gluten-free for a year (when I was also getting my thyroid to the sweet spot).  I was convinced that I had lupus. I've had positive ANA's, have a butterfly like rash on my face, had arthritis, had mouth sores, had fatigue and other symptoms. I was tested for lupus (Anti-sm, APL's, anti-dsDNA, anti-ro, anti-la, etc) and it all came up negative.  I don't know if it was thyroid or celiac but it eventually improved.  Rather than getting a flare-up every few months, that lasted a few months making it hard to brush my teeth, button my pants, hold a book, or use scissors, I now just get a couple of milder flareups with small pain and weakness, and it only lasts a week.  It is definitely autoimmune but it seems to be holding with thyroid treatment and gluten-free diet.

 

I've also now cut all added sugar from my diet with the hopes of reducing my inflammation even more.  i'm guessing it is a good thing to do since I had a mild flare-up in response to my dietary changes, sort of like how I felt worse going gluten-free before feeling better.

 

I really hope it isn't lupus for you too.  Double check those thyroid tests just in case.  (hugs)

[bartfull]

Thanks, NVS.

 

My TSH is 1.010 with the reference between .450 and 4.500.

 

T4 is 1.26 with a reference between .82 and 1.77

 

T3 though is at the low end. It is 2.8 with a reference between 2.0 and 4.4

 

I'd like to think it IS my thyroid. Should I call my doctor again and ask about this? With no insurance this is getting expensive but it sure would be nice to get my hands back.

[nvsmom]

Your TSH looks good, so even if your other numbers were really out of whack, and they aren't too bad, my guess is that most doctors would refuse you thyroid medication.  

 

TSH looks good.

 

T4... was it listed as T4 (or total T4) or free T4.  They're a bit different.  Free T's are the hormones that are available for use.  They aren't bound to proteins whereas the T4 is all T4 (bound and unbound).  The free T's are thought to be better tests which I why I ask.

Open Original Shared Link

Open Original Shared Link

 

Your T4 is just barely below 50% of the normal range (about a 1.3) which isn't bad, although not great.

 

Your T3 is looks like it around 30% at 2.8.  3.2 to 3.8 would be better.  T3 is the active hormone in the body.  We mostly make T4 and then the parts that need the hormone change T4 to T3.  Your T3 could be a bit low but your pituitary (which makes the TSH  - thyroid stimulating hormone)  seems to think you have enough so it is near a 1.

 

... I don't know.  Your T3 seems a bit low to me, and in me it would give a higher TSH but your TSH is fine.  If you had just tested the T-hormones I would have said you were just slightly hypo - subclinical hypothyroidism.  Because your TSH is so perfect, I don't think any doctors would want to give you medication, which is a shame because it could be something inexpensive to try.  My thyroid meds are about $10 per month (no insurance and it's not covered up here).

 

I take natural desiccated thyroid, which is a pig's thyroid and has all the thyroid hormones (T4, T3, T1, etc).  Most people take Synthroid which is man made T4 only; it's good for most poeple as long as you change T4 to T3 well enough.  Anyway, I take 150mcg per day, which is almost a full replacement dose.  My TSH is suppressed because I take a T3/T4 mix, at about 0.01.  My FT4 is at about 60%, and my FT3 is at about 70%.

 

I wonder if a very low dose, like 25mcg of Synthroid, or some mix like Armour, would bring up your T3 and help a bit.  The problem with thyroid meds is how long the body takes to adjust.  It takes a few weeks to feel the difference, and it takes about 6 weeks to measure a difference, so if you want to try a thyroid medication (and with you it is "try" as it may not be needed but I suspect it may be needed) you'll be retesting FT3, FT4, and TSH every 6-8 weeks until you hit the perfect dose.

 

I'm sorry, Barty. I don't have any firm advice here.  You appear to be in a grey area of maybe it will help but maybe not.  

 

This site is patient run, but I learned a lot about thyroiditis from reading her book: Open Original Shared Link

 

Are you eating foods that don't cause inflammation?  Sugars are about the worst for that.  I've been pretty amazed at how much better I feel after giving up sugar.  My inflammatory arthritis tried to make a comeback when I started but it barely lasted a week and I could still open bottles.  It's helped reduce my OA in my knees by a LOT and has helped some in my hips.... My situation is different than yours though because I was becoming prediabetic so I am sure that played a part in my inflammation and feeling better.

 

I do know that those of us with autoimmune problems do have higher inflammation levels so anything we can do to bring it down is usually a good thing.

 

(((HUGS))) It's hard giving up things, even if it is hopefully only temporary.  I used to run half marathons and play basketball.  Settling for walking is a hard blow to take, so I understand your frustration.  Keep fighting.  I know I'll never run another 26K, but I think if I work at this I may be able to run another 5k with my boys, and play a bit of basketball here and there.  Keep at it.

[bartfull]

The T4 is listed as "Thyroxine (T4) free, Direct". The T3 is listed as "Triiodthyronine, Free, Serum".

 

I HAVE been consuming sugar! I have doubled up on the yogurt because he gave me an antibiotic. I eat a cup each morning and another at night. It's organic vanilla (Stoneybrook) and it's the best tasting yogurt I have ever had. I never thought about the sugar! (Sometimes I can be pretty dense but I blame it on brain fog. )

 

I guess I'll switch to plain (yuk). Maybe I'll just start eating lots of salad and use the yogurt to make dressing. That way I'll get my probiotics without the sugar, plus I can put them on anti-inflammatory veggies like Kale and broccoli and carrots. Oh yeah, and avocados.

 

I do think it's lupus though. My wrists and fingers are terrible, and I have swelling in the muscles about one third of the way between the wrist and elbow. Lupus doesn't just cause joint pain and swelling, but muscle problems too. It hurts to do just about anything today. Driving is a bear, even with power steering. Even turning a light on hurts. I can type because I don't have to twist my wrist, but anything involving a twisting motion makes me flinch.

 

Oh well. Could be worse. Probably will be. I'm reminded of the way my late husband replied to people who asked how he was doing before he went for back surgery - "Better than I'm going to be!"