Who do I consult (and when) based on these results?

[twopack]

I'm jumping forums to get some expert advice from experienced PwTD (people with thyroid disorders).  I’ll apologize up front for what I’m sure will be long.  I want to give you the best picture possible of me at the moment.

I've have MS and dealt with a variety of symptoms for years.  Recently I was hit with severe pain, swelling, redness and spasticity that centered close to (but not necessarily in) multiple joints.  It migrated from place to place initially but has settled in the most distal joints now (wrists thru fingers, ankles, feet).

The PCP saw this as an additional autoimmune inflammatory process as soon as he saw it.  He ordered labs and started Prednisone (it's helping).  This is a new doc for me.  I told him I have noticed increased general thyroid symptoms like dry skin and hair thinning but the most notable and troublesome symptoms that have increased dramatically over the past few months are:
Development of a fat, round, saggy, sad face (and chins) with only minimal weight gain
A tendency to hold my head tilted back slightly (to breathe better)
Feeling of pressure over the cricoid area of the throat (intermittent only - I can breathe and swallow)
Intermittent tingling of lips and tongue and plugged feeling in ears
Feeling like I am wearing a few extra layers of skin (like burdensome layers of clothes in the winter)
Lower leg edema (left > right)
Increased vision problems (ghosting of images more than blurring)
Complete intolerance to heat (my comfort margin for temp is narrow in general)

It has gotten harder to discern when symptoms and unusual sensations are from MS or when they might be coming from something else.  I have tended to assume most things are MS progression but this new type of inflammation and lab results have me wondering.  Here are the current abnormal and other significant (as far as I know) lab results.

ESR           78     (0-21)
Rheumatoid factor <10 (0-15)
ANA           1:80  homogeneous and speckled patterns detected
(Reported higher by the lab doing the analyzer panel)

C3 Complement 258 (90-180)
C4 Complement 54 (16-47)
Thyroid Peroxidase
     Autoantibodies 164 (<60)

T3, total 0.7 (0.7-1.9)
Free Thyroxine 1.19 (0.76-1.46)
TSH, 3rd generation 1.15 (0.358-3.74)
WBC is high normal (9.2) showing high % neutrophils and low % lymphocytes

I've been tested for autoimmune markers and thyroid disease numerous times in the past (as various symptoms presented) but never in great depth since ANA and TSH were always normal.  I’d have to dig old labs out to see if there are any trends.

It's been three weeks since the blood was drawn.  I'm not sure who all has the labs in hand at this point.  I've heard nothing about plans, treatment or referral from any physician.  I take that back.  I am supposed to be looking for a rheumatologist.

I'm getting impatient to feel better in general now that the Prednisone has most of the pain under control.  It seems to me my labs could indicate an autoimmune thyroid problem.  I'm actually feeling hopeful that I could feel better with thyroid treatment but am cautious because I have been disappointed over health issues many times in the past.  There's been little to inspire hope for a while now.

SO THE FINAL QUESTION IS:  Do you think these results and any of my symptoms are significant enough to warrant using a cattle prod to quicken my PCP's referral process?  

If yes, will I need an endocrinologist in addition to the rheumy?  Should I be looking for two referrals?  Sooner rather than later?

Thank you so much for taking a look at this.  I appreciate any direction you can offer.

Stay safe to any of you preparing for or facing Irene.

Mary

[Barb135]

T4 can not be used directly by the body; it must be converted to T3.  Most of the conversion is done in the liver, but some is done in other organs, as well.  I don't know a specific cause for not converting, but some of us don't.  I happen to be one who doesn't convert well.

One does not specifically have to have Hashimoto's to be low in the conversion process, though Hashimoto's is the most common cause of hypothyroidism, in the developed world.  

Hashimoto's, itself, does not specifically cause symptoms; it's the hypothyroidism caused by the Hashimoto's, that causes the symptoms and yours are consistent with hypothyroidism.

Hypothyroidism can cause joint/muscle pain.  I was told for years that the pain in my knees and fingers was from arthritis; however, once I got  on thyroid medication and my levels began coming up, the pain diminished.

Yes, I understand that both MS and Hashimoto's are autoimmune diseases.  It's just that a rheumy usually comes into play when rheumatoid arthritis is involved and you don't seem to have that.  I wonder if your ANA was elevated because of the MS.

Well, with your vitamin B12 at 1900 (most ranges are 200-1100, or thereabout), I guess it's safe to say, you aren't deficient.

If you have a good pcp s/he could easily manage your needs, so long s/he is willing to test and treat adequately.  Maybe your new pcp will be willing to learn about the testing/treatment and will be able to help you after all.

[twopack]

Thank you both for your answers.  It looks like the trick will be to get lucky enough to find a doctor with the knowledge and willingness to test and treat a not-so-obvious thyroid problem.

I've seen T4 to T3 conversion problems mentioned here when I browsed around but didn't find anything too specific.  Is there a known cause for that?  Is it a separate possibility from autoimmune thyroiditis?

I've read that part of thyroid treatment is looking at symptoms instead of just labs.  The facial changes, throat pressure, tingling and fat re-distribution I mentioned have appeared or intensified greatly over the last 4 months.  I'd be interested to hear if you think those are significant to possible Hashimoto's.  For that matter, have you known thyroid imbalance to cause major inflammation at joints or does it stop at stiffness/pain?

I'd LOVE to have a PCP manage all my needs.  It gets tough when one system (immune) is attacking several others.  I need to see the rheumy because I still have plenty of inflammation going on and lab indicators of abnormal antibody production.  MS (diagnosed) and Hashimoto's are both diseases of autoimmunity.  I'd love someone to help me put a stop to attacking myself.

Thanks for the B12 suggestion Barb.  I supplement orally after years of PPI treatment for GERD and borderline anemia (probably also a response to chronic inflammation).  The B12 was last tested during the MS diagnostics and was sitting around 1900.

I guess I'll be forced into patience again.  No doctor seems to share my urgency to make me feel better NOW.  I'll work with my new young PCP about getting additional testing, treatment and/or referral.

[Barb135]

You are right, that the high TPOab indicates an autoimmune thyroid disease, most likely Hashimoto's Thyroiditis.  

I'm not sure why you are looking for a rheumy, when your rheumatoid factor is negative.  

You don't need to have an endo, so long as you have A doctor who is capable of treating thyroid disease adequately, meaning one who will test properly and adjust Free T4 and Free T4, so as to alleviate symptoms.  If you find a rheumy you like, s/he could just as easily manage your thyroid, if trained in that area and willing to work with you. Or your pcp can manage it, if trained and willing to test and treat properly.

Yes, you should probably prod someone to get further tests done.  Insist on the FT3 and I'd also suggest a thyroid ultrasound, which will determine whether or not you have nodules.  I'd also suggest a vitamin B12 test, as deficiency in B12 can cause MS like symptoms.  

[flyingfool]

I would definitely ask for a Free T3 test.

You are mid range even slightly above in the free T4 @ 1.19

However your total T3 (the Total test is outdated and doesn't show a lot) is on the VERY bottom end of the range.

The total test being on the bottom end of the range MIGHT suggest you have a conversion problem.  That is your body does not convert T4 into T3.  And it is the free T3 that the body uses.

Many people tend to feel good or get symptom relief when their Free T4 is mid range (which yours are!) AND the Free T3 are in the UPPER 1/3 of the range.

In your case if you have a conversion problem.  I would not be surprised to see that your Free T3 are in the bottom part of the range.  

IF this was true, it would be recommended to try a T3 med.

The problem you will have is twofold.

1) Getting the Dr to actually run the free T3 test
2) Getting the Dr to believe that if you test within the "normal" range but less than the upper 1/3 of the range to actually give you a script for a T3 medication.

Really push for the free T3 test and then go from there!