TSH at .64, but still having hyper symptoms...help!

[sarasue444]

I had a hugh hashi flare in December (TSH .28), and endo has been lowering my dose to .375.  It has been 10 weeks on the new dose, and my TSH is .64.  Endo says that's still a little low.  I have terrible migraines and when I take the meds in the morning, I get shaky and spacey.  Lots of thigh pain and feels worse when climbing stairs.  I'd like to lower my dose some more, but am a little scared.  Please offer any comments.  Thanks.

[sarasue444]

Thank you and happy knitting!  

[goolarra]

I can't say that adding Cytomel will DEFINITELY help you.  It's just that I see an aberration in your current labs, and I think it might be worthwhile to correct that and see if it relieves your symptoms.  T3 is the active form of the thyroid hormones, and if you are not converting T4 to T3 adequately, you will not feel well.  T3 is also very fast-acting, unlike T4.  It doesn't have to build in your system.  So, you should see improvement sooner, also.  However, your body will still take time to heal once it is getting adequate T3, so your aches and pains will not go away over night.  If I were you, I'd try it before exploring fibro and CFS any further.  

[sarasue444]

I don't know.  Both my internist and new endo are pretty middle of the road.  I may have to go to another endo.  Could these numbers suggest the symptoms I'm having?  I'm starting to worry that I have fibro or cfs.  Yikes.  Not good.   Thanks for your time.

[sarasue444]

Forgot to add:  my TSH was .028 in Feb, .069 in March, .064 in April and now .056.  Going down!

[sarasue444]

Well, I have the lab numbers.  FT3: 317 (230-420), FT4 1.39 (0.8 -1.8), THS .056 (.04 - 4.5)

Looks like I'm still high?  I don't understand--everything feels hypo.  What do you think?

[goolarra]

Antibodies are basically either positive or negative...raw numbers don't mean a lot.  My TPOab on diagnosis was 900+, and I'm also TGab positive, and that ws 3000+ (just to give you an idea of scale - numbers in the thousands are not unusual).  Antibodies can also vary wildly, even intraday.  

Symptoms come from the destruction of the thyroid by the antibodies.  Symptoms do not come from the antibodies themselves directly.  The complete destruction of the thyroid can take decades or months, depending on the individual.  So, symptoms don't depend on the antibody count, but on the degree to which your thyroid function has been destroyed to date...and, of course, more and more is destroyed every day.  So, the symptoms are the same no matter what your count is.  

I really thought I would never knit again...I'd spend the evenings with ice on my wrists, coundn't even think of  actually knitting.  I must have made close to ten pair of socks this winter...hang in ther...it'll come back.

[sarasue444]

Yes, I will post the labs.  I am so grateful for your comments and this website.  I, too, spend a lot of time on the computer.  I use to do needlepoint and knit and would love to get back to both.  Thanks for the comments on thyroid only.    Question on the antiperoxidase antibodies:  the range for the test was normal below 60.  My results were 286--is this high?  Also, how to the antibodies relate to actual symptoms in each person.  Does 286 suggest fewer symptoms than, say, 2300?

[goolarra]

It all sounds like thyroid to me.  I had carpal tunnel when hypo...gone now even though I spend most of my life on this keyboard (my work involves computers, too) and do a lot of needlework when I'm not doing this.  Cold feet, dizziness, brain fog, joint and muscle pain...it's probably all thyroid.

I'm really glad to hear you've had bloodwork.  If you'd like, post results with reference ranges (these are lab specific and have to come from your own lab report), and we'll try to help you interpret them.

[sarasue444]

I have had just two dose adjustments in the last 18 years--the last one about 5 years ago.  I was adjusted down from .075 to .0625 then.  Yes, my doctors have used TSH exclusively.  I had a lab done yesterday--FT3, FT4 and TSH.  I can't sleep (at best 5 1/2 hours a night), and I think a lot of my tiredness has to do with that.  I hope this is all thyroid and not fibro, too.  I'm starting to get carpal tunnel, my feet feel like ice in the AM, am somewhat dizzy and I have to pay careful attention when doing bookwork.  Other pains in hip and shoulder with some leg pain on right side.  Weird!!

[goolarra]

You don't have to be below range on FT3 and FT4 to be hypo (or above range to be hyper).  We all have our own "range" in the population range where we are well...get out of that, and it doesn't matter how "normal" our labs look, we don't feel good.  You can look back at your labs from when you were stable (3+ years ago) and see where your FT4 and FT3 (if you ave any of these) was when you felt good.  THAT's where you want to be.  Comparing you to you is much more important than comparing you to a "normal" population.

I think it's important for you to retest now, and make sure your doctor adds FT3 to the FT4 and TSH.  I don't care if your labs are all in range....they will let you know what is too low FOR YOU since you are now hypo.  When are you scheduled to have labs again?  I suspect your doctor pays attention to TSH mostly, has been adjusting your meds based on that, and that's why you've been unstable for a few years.  You don't have to keep putting up with that...if you can't get out of bed, something is not right.

[sarasue444]

Thank you, thank you.  Yes, I know I won't be getting off the meds.  I was hoping, but now would just like to be able to function again.  I'm finding it almost impossible to leave the prone position for very long, and I'm usually very active.  I'm afraid I'm bouncing around enough that my labs won't support hypo symptoms.  And, I'm pretty sure I've been bouncing around for about 3 years--pretty stable before then.  All I know is that I did not have body pain on the .0625 dose.  I appreciate your help.

[goolarra]

Never having had fibro, I can't comment on the pain from it versus the pain from hypo.  However, when I was hypo, I could barely walk from the bed to the coffee pot in the morning...had to stop en route because I didn't think my back was going to hold me up.  It was pretty bad.  Puffy face is also a hypo symptom.

How long has it been since you've had labs?

Yes, you can become hyper anytime meds are increased.  We all have to find our own personal range in which we are comfortable and stay within that.  For many of us, that's around midrange for FT4 and upper half to upper third for FT3.  However, that's now all of us.  I happen to be very comfortable in the lower ends of the ranges and actually went hyper at levels that would make many feel very hypo.  We're all different, and relief of symptoms (both hypo and hyper) is what we're looking for.  You have to experiment...unfortunately, going a little hypo and a little hyper is often part of that experimentation...unavoidable.  But staying hypo to avoid becoming hyper is not an option, either.  

If you haven't had labwork since the last decrease in meds, I think you should request labs now...whenever you are changing dose (increasing or decreasing) labs should be done 4-5 weeks after each change.

Now that you know for sure that you have Hashi's, you at least know that getting off meds completely is not an option.  

[sarasue444]

I wonder if you'd respond to yet more questions.  I'm finding the hip and shoulder pains are getting more severe and I'm getting a little puffy in the face.  Surely this is not fibromyalgia.  I'm beginning to think I'm getting far too low on this .0375 dose.  It's been 6 weeks since I finished my lowering of the .0625 dose.  The question is:  how intense/severe can the pain be with hypo vs. fibromyalgia?  I'm starting to think I should be on a higher dose.  Also, second question:  do I run a change of becoming hyperthyroid again if the dose is increaed with "normal" test levels.  Thank you again.

[sarasue444]

Thank you for your response.  At 8 AM this morning, my professor endo called (CA time).  He confirmed a diagnosis of hashimoto's--positive U/S and positive antibodies.  He's keeping me on the current dose and will see me in 3 months time.  I asked about the body pain occuring only after lowering dose, and he said that fibromyalgia (yes, he used that word) and other pain syndromes can occur with thyroid disease.  I was amazed that he would acknowledge fibromyalgia as a legitimate disease entity.  I feel I'm in safe hands.  

[goolarra]

If you do stop taking Synthroid, you will be weaned off of it, giving your thyroid a chance to "ramp up" again.  If you are indeed not hypo, it should take over once again and replace the hormone that you have been getting from your Synthroid.  As with increasing meds, you should do it slowly and have frequent bloodwork (4-6 weeks) while this is going on.  Don't forget that if you are not hypo, your thyroid should make up for the discontinuation of Synthroid by keeping your body at the appropriate FT3 and FT4 levels.  You've already been slowly moving down, so you are on your way...the transition from 37.5 to zero shouldn't be any more difficult than the transition from 100 (I think I remember that right) to 37.5.  In fact, it should be easier now that you know what's going on and can anticipate further decreases.  Just make sure your doctor doesn't whip the Synthroid out from under you too fast...after 18 years, you do need time to adjust to each lower level.

Hope you've heard from your endo, and it's good news...let us know.

[sarasue444]

Just fretting before the call from my new endo.

What if I don't have primary thyroid disease and have to get off synthroid?  After 18 years, is this possible?  What would the side effects be before my body adjusts
(if it will)?  The endo seems to think that while I had some abnormal tests back then, they were mild and did not require treatment.  Geez, I'm a little worried.  I'm thinking it will be quite a shock to the body to get off after all this time (I am at .0375--and feeling bad).  I think it would atmminimum cause a pretty intense emotional response (depression???).  

Any comments you might have would be appreciated.  

[goolarra]

Yes, this is such a waiting game...wait for labs, wait six weeks for meds levels to adjust, etc.  All that patience is making us very virtuous, though!

I'm glad to hear your endo is re-ordering tests and U/S.  Keep us posted...

[sarasue444]

I saw my new endo yesterday, and he ordered antibody tests and an ultrasound.  Had the ultrasound today, and the radiologist said the gland was normal and symetrical, but had increased vascularity consistent with Hashimoto's.  The endo was questioning the diagnosis--"perhaps you don't have primary thyroid disease".  But, the question now concerns the antibodies.  Yikes--the waiting is difficult.  

Endo said those earlier tests I entered here were questionable because many times antibody tests will be slightly positive at menopause.  So...that's where it's at now.  If the antibody tests are negative?  Oh well, a step at a time.   Thanks again for your comments.

[goolarra]

The antibody titers are not the way we usually see antibodies expressed these days, but they are positive for both TPOab and TGab, which is, I assume, what your diagnosis of Hashi's was based on.

Anti-parietal antibodies (also positive) indicate pernicious anemia.  Do you take B12 injections?

The free T3 is both a result and range that I've never seen before.  Would you go back and check that one more time.  Ranges never go to zero.

[sarasue444]

I was looking for lab results to take to my appointment tomorrow and came across a couple from years ago.  I'm not sure how to intrepret the results.  Would you mind commenting?

Anti-Microsoaml Antibodies:  1:80 (range 1:40)
Anti-Thyroglobin Antiboides:   1:80 (range 1:40)
Free T3:  45 (range 00-40)
Anti-Parietal Antibodies:     1:80 (range 1-40)

Thank you.

[sarasue444]

Thanks for the info.  My husband will be with me, and together we will ask for the test.  A physician who would not comply is not one I would be comfortable seeing for care.  Thanks you two.

[goolarra]

I agree with "why wait?".  But part of me also wants to get my doctors to do what "I" want.  If I request a test, then they should comply.  I don't care if they want to see it or not..."I" do.  I always "edit" the tests my endo orders...he's good, and I have the ultimate say.  I've met other doctors who aren't nearly as compliant.  I agree though...Oprah and my husband (a cabinetmaker) diagnosed my hypo...an internet TSH confirmed it (68)...doctor was only necessary to prescribe.  Any way you can get it done...the end does sometimes justify the means.

[Vic2009]

>>FT3 levels might go a long way in explaining your symptoms.  I hope your new endo is receptive to running it.

I just do my own tests these days since I've given up on trying to get endo's to do anything.  You can order tests through Life Extension (or other places, this is just the one I know).

They do a full panel --
http://www.lef.org/Vitamins-Supplements/ItemLC304131/Thyroid-Panel-TSH-T4-Free-T4-Free-T3-Blood-Test.html

Why wait for them to do it if they're refusing?  It's your life.