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Thyroid Disorders Community
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4128244 tn?1350077211

I am trying so hard to understand...

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
23 Responses
Avatar universal
Hypothyroidism has a number of causes.  In the developed world, Hashimoto's thyroiditis, an autoimmune disease, and secondary hypothyroidism (actually a pituitary dysfunction) account for most hypothyroidism.

With secondary hypo, the pituitary doesn't put out enough TSH (so levels are low or "low normal") to stimulate the thyroid enough to produce thyroid hormones.  The result is that FT3, FT4 and TSH are all low.  Most doctors focus on TSH (unfortunately), so they tend to ignore the lower FT3 and FT4 levels.That's just one possibility.

"The ultrasound showed that the nodules were all functioning, and the bloodwork came back TSH low normal, T4 normal."  Did the report say they were "functioning" or hyper (autonomously) functioning?

Since your doctor has already ordered FT3, FT4 and TSH, you really should have those run.  This time, get both results and ranges and we can help you interpret them.  You might also ask him to run antibody tests to see if you have autoimmune thyroid disease.  Thyroid peroxidase antibodies (TPOab) and thyroglobulin antibodies (TGab) are the markers for Hashi's, and thyroid stimulating immoglobulin (TSI) is the marker for Graves.  

Some of your symptoms sound hypo, but some sound hyper.  Typically, acne is a hyper symptom.  Are your eyes puffy or protruding?  What are your HR and BP doing?  Weight gain or loss?  Constipation or diarrhea?    
4128244 tn?1350077211
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.
4128244 tn?1350077211
Oh, also, my Mother has a history of hypothyroidism, and my sister has a pituitary tumor.
Avatar universal
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.  
4128244 tn?1350077211
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 :)
Avatar universal
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!      
4128244 tn?1350077211
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!
4128244 tn?1350077211
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 :)
Avatar universal
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.  
4128244 tn?1350077211
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
Avatar universal
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.  
4128244 tn?1350077211

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%."
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