Does this look like Graves?

[payton382]

Can anyone help me with these labs?  I’ve been on T4/T3 compound of 120/10.  Here’s my latest labs taken 8 hours after dosing:

TSH 0.000
Free T4 1.3 (Range 0.8 – 1.5)
Free T3   3.3 (Range 2.3 – 4.2)

Reverse T3 306 (Range 90 – 350)

TPA 53 (Range 0-60)
TSI 562 (Range 0 – 139)


I’m wondering if this looks like Grave’s Disease?  I was initially diagnosed with Grave’s back in 1996, had RAI, and have been on thyroid ever since.   My Dr (ND) is unsure if it’s really Grave’s because of where my Free’s are.  She wants to lower my T4 to 80 and bump T3 up to 15, which is fine.  I’m just curious if I should get into a specialist.  What would a high TSI with normal Free’s mean?  

I know it doesn’t really matter but I’m not super comfortable with my TSH so suppressed and where my RT3 is at.  Hopefully lowering the T4 will help with both of those numbers but not sure if it’ll impact the TSI.  

Symptoms are:
Massive Hair Loss (again, always struggle with this to some extent)
Fatigue/Body Weakness
Concentration Issues
Little Anxiety, but not horribly bad right now

[goolarra]

Once we have antibodies, we often have them for life.  After RAI, they sometimes go into remission, sometimes not.  So, you do have Graves' disease, and perhaps always will, but you are not hyperthyroid and the antibodies cannot cause a defunct thyroid to produce thyroid hormones.

Once on meds, TSH is often suppressed and becomes useless in determining thyroid status.  T3 meds seem to cause TSH suppression in many people even more than T4 meds do.  Did your TSH become suppressed when you added/increase T3?

I think you're right that high TSI means nothing without a functioning thyroid.

"Your result can suggest many things DEPENDING ON WHERE YOU ARE IN TERMS OF DIAGNOSIS AND TREATMENT."  I think the emphasis I've added says it all.  You know you have Graves'.  I've heard many people on this forum say, "Once you have Graves;, you have it for life."  Your thyroid is "dead".  Your labs are consistent with the meds you are taking.  

I think your high TSI and non-existent TSH are unrelated to one another.  TSI can only suppress TSH by raising FT4 and FT3 levels.  

How long ago was your last TSI (before this one)?  

    

[Red_Star]

TSI antibodies that high does indicate Graves' but an article from Elaine Moore comes to mind where she mentions subtypes of TSI. Interesting....

"TSI Test Results

Hi,

I have been having a lot of hyperthyroid problems lately and just got some TSI test results back that I'm a little confused about. I have a result of 74 with a reference range of 0-139. What should I make of this? It seems like there are antibodies present...but not at levels that are problematic? What do I do from here?

Thank you for your help!

Hi Lauren,

Studies show that most people with TSI develop symptoms when their TSI level is right above the cutoff or higher. But this varies because there are subtypes of TSI, some with greater affinity for the more active receptors. The presence of blocking TSH receptor antibodies also matters since these antibodies block TSI from reacting with the TSH receptor.

Your result can suggest many things depending on where you are in terms of diagnosis and treatment. If you're a new patient, it can suggest that your hyperthyroidism is related to early Graves' disease (in which case you can have more TSI in your thyroid gland than your bloodstream). If you're suspecting remission, you could interpret your result as a declining TSI and the possibility of remission depending on your thyroid function tests.

The TSI result has to be looked at with clinical symptoms and with thyroid function tests. Where it's often interpreted incorrectly is when patients with hyperthyroidism are told their result is normal just because it's below the cutoff. In the normal population, TSI would be <2% activity or thereabouts. In people with a family history of Graves' disease, TSI levels are often higher. If your thyroid function tests are normal, you'd at most be said to have thyroid autoimmunity but not thyroid disease. Best, Elaine"

[payton382]

EricaMegan - I've tried Armour, was on it until early this year.  It worked for a little bit but didn't allow enough control over my T's.  Once my symptoms got bad again I switched to a compound to be able to manipulate my T's separately.  I'm happy to hear it is working for you though and thank you for the suggestion.

Goolarra - I haven't had a chance to read the PM yet.  That's what I wonder, if RT3 really causes symptoms.  And, like you said, is a less drastic approach just as effective?  I don't want to waste the next 6 months weaning off T4, to T3 only, then back to a compound, just to find out it doesn't work.  I'm very nervous to go on T3 only as it is but in another sense I'm willing to try anything if it will work.  I know there's no guarantees.

Red_Star - Thanks for the info but are you saying I would need a scan?  I don't really understand if I have Grave's or not.  I have the antibodies but not elevated T's and that's only from the medication, otherwise my T's would be nonexistent.  

I guess I still don't understand why I have antibodies.  My Dr thinks the presence of TSI is indicating something but she is not sure what.  She said it's very complex and doesn't scream Grave's but the combination of having high TSI with a TSH that became more and more suppressed, even as dosages were decreased, is saying "something" .  I have been on a lot higher doses of thyroid (even within the last 6 months to a year) and my TSH level has never been so suppressed, even on the higher doses.  It kept going lower and lower, even though my meds kept getting decreased.  

I'm still somewhat curious about the TSI...  I was reading the lab report and it states "TSI autoantibodies recognize the TSH receptor, leading to activation of Adenylate Cyclase.  TSI activity is measured by the ability of serum immunoglobulins to stimulate cyclic adenosine monophosphate (cAMP) production by a thyroid cell line expressing TSH receptors."

Once I read that report my next thought was "what is Adenylate Cyclase"?  After looking up Adenylate Cyclase I'm left wondering if having a high TSI really means nothing without a functioning thyroid since Adenylate Cyclase affects other things?    

[Red_Star]

"Graves' Disease

If you test positive for TSI antibodies and have a low or nonexistent TSH level and normal to high free T4 and T3 levels, you may be diagnosed with Graves' disease. Your scan will show increased radioactivity throughout the gland. You may also have TPO antibodies, but because TPO also occurs in Hashimoto's disease, your doctor will need to make sure to perform the TSI antibodies test to ensure an accurate diagnosis."

Excerpt from "Thyroid Disease - Hyperthyroidism - Putting It Together" by Theodore C. Friedman, M.D., Ph.D. and Winnie Yu

[goolarra]

RT3 is a complicted issue.  I've recently read that the ratio of FT3 to RT3 (which you did calculate right) is meaningless.  However, older articles I've read suggest that the ratio should be between 10 and 20, preferably closer to 20.  And I've heard others on the forum say it shouldn't be less than 20.  Who to believe?  Of course, as the theory on what's going on varies, so does the treatment.

Once again, can high RT3 cause symptoms?  The real question to ask I think is if RT3 can cause symptoms regardless of FT3 levels.  That is, if FT3 levels are adequate, does RT3 really matter at all?  I'm going to PM you links to articles that present both perspectives.

In theory, the T3-only treatment makes sense.  RT3 comes from comversion only, so if the T4 supply is totally cut off, the RT3 is going to clear eventually.  However, is a less drastic approach just as effective?

[Ericamegan]

I also had RAI for Graves.  I was still having hypo symptoms and found I have a RT3 problem and mid-level FT3.  I was reading about the T3 only route for clearing the RT3.  My dr said it was a poss, but she preferred to decrease the T4med and increase the T3med.  We decided to try switching to armour thyroid.  I was on 125mcg synthroid & 15mcg Cytomel.  We switched to 90mcg Armour in morning and 60mcg in afternoon.  Just got my latest labs and My Rt3 had dropped quite a bit.  I am feeling much better, but still a little hypo.  

My Armour dose is about 97.5mcg T4 &  22.5mcg T3 = 187.5 total.  
Old dose 125mcg T4(synthroid) & 15mcg T3(cytomel)= 185 total.

[payton382]

Ok, thank you for the info, it definitely sets my mind at ease.      

Also, if I calculated the FT3 to RT3 ratio correctly I get a number of 10.78.  Is it true that anything under 20 is not good?  If so, in what way?  If the number of 10.78 is correct would that justify a T3 only treatment for a period of time or not?  

My Dr has suggested taking the T4 either way, way down or weaning completely to try to clear some of the RT3 (doing T3 only).  And then slowly add back in T4.  I've been hesitant to go this route (she's talked about it a few times in the past too).  Since I've had my FT4 low, high, and mid and my FT3 low, high, and mid and still have the lingering symptoms I'm wondering if I should try this approach.  Can high RT3 cause symptoms?  If not, then I'm not interested in weaning off T4 and doing T3 only, not even temporarily.  But, if high RT3 could be the culprit then I would be interested.  

Do any of you believe in this course of treatment?  And, how long do you think T3 only would be sufficient?  

We'll do labs again in 4-6 weeks and she said I could just think about it until then (or I can call her if I change my mind and want to start the wean down now).  I think I'll see what symptoms I have and what my next labs are before I make any decisions.  Would love to hear what you all think.  

[Barb135]

Everything goolarra said is correct and I'd also add that TSH causes no symptoms, nor does it correlate with symptoms.  My TSH has been at < 0.01 for the entire 4 years I've been on thyroid medication, and I've had no adverse effects from it; in fact, have spent much of that time very hypo.

[goolarra]

Antibodies don't go away just because you've had RAI.  However, if you have no thyroid function due to RAI, the antibodies cannot stimulate your thyroid to produce thyroid hormones, i.e. you still have the antibodies, but they can't hurt you any more.

As a rule of thumb, when you add 5 mcg of T3, if you want to keep the overall dose the same, you decrease T4 by about 20 mcg.  Your FT4 is right at midrange, but your FT3 is a little on the low side (just a bit above midrange, and it should be higher).  Lowering your T4 by 40 mcg might be a little drastic???  Maybe your doctor would consider lowering it by 20?

A meds change is unlikely to impact TSI.