I am trying so hard to understand...

[WowAmIConfused]

Hi. I'm new to this Community, and to thyroid disorders. I apologize in advance for anything stupid I may ask/ say :)   Let me give you some background on myself. I'm a 45 year old post menopausal woman, and I've been diagnosed with depression, anxiety, fibromyalgia, chronic fatigue, etc. Doctors have been testing my TSH for 20 years, and the results are always the same. Low Normal. I'm so sick of those words. In July, I had an MRI for back and neck pain, and a multinodular goiter showed up. This was followed by a nuclear ultrasound and bloodwork. The ultrasound showed that the nodules were all functioning, and the bloodwork came back TSH low normal, T4 normal. I'm sorry, but I have no actual numbers or reference ranges. I was told to follow up with an ultrasound and repeat bloodwork in 6 months. Since then, (even before then) I have become so tired I sleep 12 to 15 hours a day. I can't concentrate, my memory *****, I'm losing hair like crazy, I have terrible "eye headaches?", I don't eat hardly at all, I have dry skin (always have), my nails are weak and brittle, and I am consumed with pain, despite pain medication. My eyes are always puffy, yet I am dehydrated. I have terrible acne. The list can go on and on. I called the Dr. back, he ordered a regular thyroid ultrasound, and bloodwork for TSH, free T4, and free T3, among others. I haven't had these done yet. My main question is this, if my TSH (I understand it really doesn't mean much) is "Low Normal", why would I be having symptoms of hypothyroidism? Any insight would be Greatly appreciated.
Thank You,
Sue

[goolarra]

I sympathize with that.  I live in a rural area, too.  I was lucky to find an endo in the "big" city, 20 miles away.  If I hadn't liked him, I'd be driving 125 miles to the next larger medical market.

What about your PCP?  Would he prescribe meds?

[WowAmIConfused]

I wouldn't even know where or who to look for, I live in a very rural area and travel an hour or more to most appointments. Unless I wait for the Endo.. not really looking forward to the wait, but I'm on a cancellation list. PCP did suggest I see a closer Endo, part of Geisinger, maybe I could get in sooner.

[goolarra]

He sounds like a bit of a lost cause.

Your FT3 doesn't look too bad relative to your FT4, so you'd probably be a good candidate for taking a T4-only med (levothyroxine).

It's always best to start out low and increase slowly as needed to relieve symptoms.  25 mcg is a very conservative starting dose.  It takes a starting dose (or dose change) 4-6 weeks to reach its potential in your blood.  So, you have to wait that long to retest and re-evaluate symptoms.  We often feel worse for a while on starting meds because the whole endocrine system has to rebalance.

Your meds have to raise your FT4 level before you are going to feel better, and sometimes this doesn't happen on a very conservative dose.  It can take several dose adjustments.  

Any chance of taking these labs to a more enlightened doctor?

[WowAmIConfused]

Well, considering my appt with him on Tuesday, when he told me he doesn't agree with testing for FT3 or FT4, and that TSH in range is fine, I doubt it. I can try... If he gives in, what would you suggest? I'm not due to see him for a month, unless my "strep" doesn't clear up.

Hope you are well today :)

[goolarra]

So, that means that your FT4 is below range, and your FT3 is at 38% of range.  Both of those are too low.  Rule of thumb for FT4 is midrange and FT3 upper half to upper third of range.

"I asked, so what do we do considering it is symptomatic?"  Excellent question...I love to leave them dumbstruck!  "Usually" seems to be the operative word in the quote from the doctor's article.  

Do you think this doctor could be talked into a low, trial dose to see if it does make you feel better?  Are you due to follow up with him?

[WowAmIConfused]

I've also lost 12 1/2 pounds since July, probably due to my entire lack of appetite. She says this is not something to worry about. I'm 5'4" and weigh 117#. I'm comfortable at this weight, but don't know if it is a factor. I called my Infectious Disease Doc and asked for a referral to an Endo that knows about HIV, but will probably not get a response.

[WowAmIConfused]

She just called back:

FT3: 2.78  Range: 2.10 - 3.90

Also told me Dr said he found an article...

"Isolated low T4 is normal in HIV patients. It is usually asymptomatic and treatment is not usually recommended."

I asked, so what do we do considering it is symptomatic? She had no answer for me.

[goolarra]

Your TSH is now "high normal", using the 0.3-3.0 range.

FT4 is "low normal"?  Does she understand that 0.73 is less than 0.77 and therefore LOW, not "low normal"?  Remember that many of us still have hypo symptoms until FT4 is around midrange, and you're a long way from midrange.

[WowAmIConfused]

Hi Goolarra, That's good advice and I certainly will post a new thread when I have a bit more time. I just wanted to update you with what I got back so far...

10/16
TSH: 2.78  Range: 0.34 - 4.82 uIU/nl
FT4: 0.73  Range: 0.77 - 1.61 ng/dl
(Was told by the nurse my FT4 was "Low Normal")

I haven't received the FT3 back yet, but will update when I do. There are also a few other things on my labs that came back low, but have an eye exam to go to.

Thank you so much for your continued support! Sorry to say, I'm getting more confused :(

[WowAmIConfused]

Got absolutely nowhere with him at the office visit. "The Chronic Fatigue, the Fibro, the HIV, and I imagine the meds can all cause the same symptoms, and I believe that's what the Endo is also going to have to say." Oh, and I have strep :p

And yes, these are those labs. Unreal. I had him print out a couple of years of bloodwork, but I think they only contain TSH. I'll have to go through them.

[goolarra]

Imaging is not my forte.  If I were you, I'd post that as a separate question with a title that makes it apparent you want help interpreting imaging.  We have members that know a lot about imaging...might take a while to get an answer, but you will eventually.  If you'd like to throw a question in for me:  "Does anything indicate a hyperfuntioning (autonomous) nodule?"  I don't think so, but, as I said...I'm not good with imaging.

That's probably TGab (or includes TGab), but I'm not sure of that.  The range looks like a TGab range.  Both antibodies are in range, so it doesn't look like you have Hashi's.

Your TSH back then was smack dab in the middle of the range.  (Recommended range for TSH was changed a few years back...it's controvesial once again in light of the recent AACE/ATA position paper...to 0.3-3.0, which is a more reasonable range.)  However, with FT4 below range, I'd expect your TSH to be much higher, so even though "normal", it's still low.  Make sense out of that mess?

At the same time, your FT3 is good...52% of range, which is especially impressive given the very low FT4.  That could be what was keeping your TSH up where it was also.

It will be interesting to see what's going on currently.  These weren't the labs where they told you your TSH was "low normal" and your FT4 was "normal", were they?

"There is a smaller adjacent nodule measuring be millimeters."  ?  Sloppy, sloppy.  We know it was smaller than the adjacent one, which was 9 mm, so it's most likely not a concern.  Do we think the person who wrote the report was rhyming (be/three)?  We pay how much for this kind of shoddy report?

[WowAmIConfused]

Okay, "old test results"

5/29
C Spine MRI: 2.6 mm T2 hyperintense lesion w/in left lobe of thyroid gland.

6/15
TSH: 1.51 Range: 0.34 - 4.82 ulU/nl
FT4: 0.67  Range: 0.77 - 1.61 ng/dl
FT3: 3.03  Range: 2.10 - 3.90 PG/ML

TPOab: <0.25 Range: 0.25 - 9.00
Anti Thyroid Ab Screen: <20 Range: <20 IU/ml
Is that the same as the TGab?

(He did more than I thought!)

6/21
Thyroid u/s
"In the posterior aspect of the upper pole of the right lobe there is a 9mm hypoechoic nodule. There is a smaller adjacent nodule measuring be millimeters."  ?
"In the posterior aspect of the lower pole of the left lobe there is an isoechoic nodule measuring 13 x 9 x 11 mm."
"The color Doppler flow is within normal limits. The surrounding soft tissues are grossly normal."

6/22
Nuclear thyroid uptake
"There is no discrete abnormal area of increased, decreased or absent uptake to indicate a discrete thyroid gland lesion."

"Uptake values at 24 hours are 21%. The range of normal uptake at 24 hours is 15 - 30%."

[goolarra]

I think I was diagnosed with Hashi's in 2007, but I'd been very hypo for about 18 months at that point, and I think slightly hypo in hindsight probably all my life.  My doctor couldn't figure out what was wrong with me.  My husband was watching Oprah (don't tell him I told you that), who had Dr. Oz on as a guest that day, and they were talking about hypo.  It was my husband who diagnosed me!  He's a cabinetmaker!  What's wrong with the medical system?

I ordered a TSH test online (the only finger prick I ever did), and it came back as 60-something.  I called my doctor to make an appointment; she didn't have anything for a couple of weeks; so, I got the nurse to order a thyroid panel.  By the time I saw my doctor, I had diagnosis and labs in hand, and she actually said to me, "I'm so glad WE finally found something wrong with you that we can treat."  

And that was how badly she blew it just on diagnosis...treatment snafus were yet to come!

About a year into this, I discovered this forum...I don't know how I got here, either!  I found some very knowledgeable people, who helped me a lot.  I got hooked on the subject, and here I am 6,500 posts later (6,501 now!).  You have to be your own advocate, and if you have something that is a lifelong condition, you have to arm yourself with lots of knowledge and be prepared to stand up to the medical establishment.  At that point, you might as well share it...

I'll be interested to see your labs next week.  I meant to mention earlier that there are those amongst us who think fibro and CFS are not separate diseases, but due to the overemphasis on TSH and flawed thyroid test reference ranges are actually hypothyroidism.  I think it's really good you're pursuing this.  

[WowAmIConfused]

Sorry I sent you to the file! You are such a wealth of information. How do you keep it all straight? Can I ask how long you've been living with thyroid problems?

May God (or whomever you choose) Bless you for the work you do here. I've only been here for a day, and I see so many people that you help. You have helped me immensely, and for that I am forever grateful.

I also think that this community is wonderful. I've read many of the posts and replies, and it seems there's always someone willing to lend a hand, or at the very least an ear. I don't know exactly how I got here, but I'm sure glad I found my way!

I'll update you as soon as I know something, I hate to take up so much of your precious time.
Thanks Again,
Sue

[goolarra]

TRab is actually a complex of antibodies that all attack the TSH receptors in the thyroid.  They include blocking, binding and stimulating antibodies, and therefore have much different effects.  Blocking and binding can contribute to hypo, while stimulating causes just the opposite - Graves' disease.  Blocking antibodies block the action of TSH on receptor cells; binding antibodies bind to the TSH receptor and prevent TSH and other TSH receptor antibodies from reacting with the TSH receptor; stimulating antibodies stimulate thyroid cells (thus the clever name), acting in place of TSH and ordering the production of excess thyroid hormone.  There will be a quiz!  (You sent me to my mess of a thyroid info file...that was as much for my own review as anything.)

So, the short answer is that what you are calling TSBab is one of the TRab's.  However, I have never heard it called that (TSBab) nor have I ever heard of anyone being tested for it, although I know it is.  Once again, I think that might be something that's only usually explored once the more well traveled avenues have been exhausted.

TSI (thyroid stimulating immunoglobulins) are considered the definitive test for Graves'.  

If your TSH is low or low normal (and you have hypo symptoms), it's a sign that your pituitary can't produce enough TSH.  If antibodies were blocking or binding the action of TSH on your TSH receptors, we'd expect your TSH to be high if your pituitary were working properly since (we're assuming at this point from your symptoms) that your FT3 and FT4 are low.  

I'm sorry to hear that community is so inactive.  I think we have a particularly good community here, with both lots of participation and lots of knowledgable members.  I haven't been on too many of the other forums, but none equalled ours...no prejudice here whatsoever!  I had no idea there were fee based expert forums.  

[WowAmIConfused]

Unfortunately the HIV Living with Community Forum is pretty much empty, 5 posts in over a month? That surprises me, and the Ask the Expert HIV Living with Forum is fee based per question. I guess I don't have a choice, I have to stay! Which I was going to anyway :)

[WowAmIConfused]

Thank you for that :)  I didn't want to be a deserter! It's amazing, after 23 years, I'm still concerned about what people think. You made me smile for the first in some time.
As for the TSBab? If what I wrote is correct, it measures Blocking Thyroid Receptor Antibodies? Is that the same thing as TRab?
Thanks goolarra, especially for the smile, and the knowledge!

[goolarra]

It sounds like your mom should request FT3, FT4 and TSH as well.  If her TSH is low normal and her FT3 and FT4 are, too, she might be suffering from secondary hypo as well.

RT3 is not the first place I'd go.  It tends to be a problem more for people on meds (T4 monotherapy to be specific).  While I'm sure it could affect people not on meds as well, there's so much resistance to it in the medical community that I think I'd pursue more conventional avenues first.  If they don't work, then testing RT3 would be in order.

I don't know what TSBab is.  Did you mean TRab (thyroid receptor antibodies)?  I've only done one finger prick test, so I have no means of comparison.  I think a blood draw has a high degree of accuracy (repeatability).

I don't know that you need to move this thread.  We have lots of members with other issues that either complicate thyroid diagnosis and treatment or actually cause thyroid issues.  You might also try posting on one of MH's other forums (go to "Forums" in the blue bar at the top of the page).  I'm sure there's an HIV community, and they might have more insight than we do about a causal link and/or how HIV meds affect the endocrine system, but I don't think you have to dessert us!      

[WowAmIConfused]

I'm not sure about my Mom, She THINKS it was for a "sluggish metabolism". She was on medication when I was quite young. She keeps telling me she was on indocin (which I know isn't right). She was supposed to take it indefinately, but she couldn't afford the meds or the Dr. visits. She still has symptoms similar to mine, but her tests come back the same, "low normal".

My sister seems to only have problems with her prolactin levels, As far as I know, she doesn't have any thyroid issues.

I'll try to get my labs done on Monday, the sooner the better! He hasn't added the TPOab or TGab, but I will ask. How do you feel about reverse T3, and TSBab? In your experience, is finger prick blood spot testing any more accurate than a blood draw?

He's also doing a Chem-comprehensive, a CBC w/ diff, and a Lipid Profile.

I didn't mention this before, I didn't think it was relative, but after researching maybe it is. I am also HIV positive. I was diagnosed in October of '89. I am what's called a "Non Progressor" (I am very lucky). My body, for reasons unknown, has more of a handle on things than most. I am on meds, for about 6 months now, and my CD4 is in normal range, and my viral load is undetectable. I read that HAART therapy can cause thyroid problems, and HIV itself can wreak havoc on the endocrine system.

Do I need to move this thread?
Thanks goolarra, for all of your advice and understanding :)

[goolarra]

Do you know if your mother has Hashi's?  Hashi's tends to "run in families", a term used when there's a suspected hereditary link that hasn't been proven.

Pituitary tumors usually cause TSH to skyrocket.  How does your sister's manifest?

If i were you, I'd have blood drawn for the thyroid labs.  Then, you'll have FT3, FT4 and TSH all on the same draw and will be able to see how they relate to each other.  If you can get your doctor to add in TPOab and TGab (if he hasn't already), that would be great.  

As rules of thumb, FT4 often has to be midrange and FT3 upper half to upper third of range before symptoms are relieved.  Just being in the lower end of the range is not enough.  

[WowAmIConfused]

Oh, also, my Mother has a history of hypothyroidism, and my sister has a pituitary tumor.

[WowAmIConfused]

Thanks goolarra, I think they said the nodules were hot, or warm. That's all. I would say my eyes are puffy, My HR is a little high, my BP has always been low. I weighed the same as I did in high school my whole life, until an anti anxiety med (I think) put 30 pounds on me. It took me almost two years to take it off, the last 7 -10 pounds are refusing. I mostly have constipation, for a week or two at a time, with occasional bouts of diarrhea. I also have NO libido, and an extreme intolerance to cold (intolerance to high humidity), consistently low temperature, and dizzy spells. I always attributed those to my blood pressure.