What to expect..

[carpenter38]

  Last Wednesday I got my labs back with my TSH at 25.5. My Free T4 was at 0.9, and my T3 total was at 72. I went to have things checked out because I have been feeling very fatigued, almost a sort of trapped under ice/ suffocating feeling for the last 6-8 months.  Anxiety has been at an alltime high, and had some pretty scary feelings in my chest. Turns out other than my LDL being at 134, these are the only things that are off... I am relieved, yet unsure on what to expect.  Doc also has put me on the elimination diet to deal with some minor GI issues and overall wellbeing, as she thinks I may be sensitive to dairy and gluten.  I was prescribed 50 MCG of Levothyroxine, and it is only day 4.  At this point I feel it is a waiting game to see how the meds react to my individual situation.  Given the scenario that the Levo does work, what should I expect? I'll be honest I was starting to feel very concerned as I creep into my 40's that I was going crazy.... I have been lurking here for the past few days and thought that it might be best for me to start my own thread with my numbers and introduce myself  

[gimel]

If your last tests were reflective of taking those doses, then I would increase the D3 to 2000 IU and try 250 mcg of B12 daily.  Your B-complex does not contain much B12.  

[carpenter38]

Yes I have read that article and actually forwarded it to my Dr.  Along with the case studies of the importance of FT3 testing. Saw it in another thread on here.  

Currently I have been supplementing with B-complex which has 12mcg of b-12 in it along with other things including vitamin c.  I take one a day along with 1,000 IU of vitamin D.  

What is your thought on that? Do you recommend something more from either of those two?

[gimel]

It is good that your doctor is agreeable to increasing your meds, so far.  Your Free T3 and Free T4 are way too low in the ranges.  You should push to go back every 4-5 weeks to be re-tested and for an increase, until your levels are optimal and symptoms are relieved.  

I still think your Vitamin D is too low and needs to be raised to 55-60.  Your B12 is also too low, and needs to be raised to the upper end of its range.  So you can supplement on your own to raise those levels.  

If you find that you need to switch doctors, be aware that you need a good thyroid doctor, not necessarily an Endo.  A good thyroid doctor will test and adjust Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH.  You can get some good insight from this link written by a good thyroid doctor.  

http://www.hormonerestoration.com/Thyroid.html

[carpenter38]

The 25 Hydroxy is what they used and it was  33 ng/ml. ref range was 20-50.

I just got my b12 results and they are 556 pg/ml with ref range at 247-911.

So far she has upped my dosage by 25mcd putting me at 100mcd currently.  

I have learned so much valuable info reguarding what needs to be done from you guys I cannot thank you enough.  I live in the Kansas City area and as long as I can get the doctor to do what I ask (which she surprisingly has) then I don't see a need to go to an endo just yet.  But it may come down to that I guess we will have to play it by ear at this point.

Thanks again and let me know what you think about my B12 levels.  

[gimel]

Then I don't understand that reference range.  When I look for info on that range, here is typically what I find.

"The 25-hydroxy vitamin D test is the most accurate way to measure how much vitamin D is in your body.  The normal range is 30.0 to 74.0 nanograms per milliliter (ng/mL)."

That is why we usually tell members that the best level for Vitamin D for them is 55-60.  AS mentioned precuously,  your Free T3 and Free T4 were way too low in the range and many members say that symptom relief required Free T4 at the middle of its range, and Free T3 in the upper end of its range, or as necessary to relieve symptoms.  You are a long way from those levels, so you need to keep increasing your meds, and going back for re-test every 4 weeks or so until you close in on your optimal levels..  Your ferritin level was good.  Need to know the B12 result.  

[carpenter38]

Vitamin d units are ng/ml

[gimel]

Obviously those Free T3 and Free T4 results are much too low in their ranges, for many people.  Many members here, myself included, say that relief from hypo symptoms required Free T4 at the middle of its range or higher, and Free T3 in the upper end of its range, or as necessary to relieve symptoms.  Symptom relief is what is really important, not lab results.  So, I hope your doctor has no issue with increasing your med dosage.  I would request a 25 mcg increase and follow-up tests in 4 weeks, with an expectation for a further increase at that time.  

Your Vitamin D range looks a bit strange.  What measurement units are shown for that?

[carpenter38]

Yes they did and I have the results.
Free T4 1.0 (0.8-1.8)
Free T3 Serum 2.4 (2.3-4.2)
TSH 19.3 (0.50-4.20) This one was weird because I tested back in late Dec. and it was at 8.73, but has since gone up again.

VitD 25-Hydroxy 33 (20-50)
Ferritin 204 (22-322)
B12 - still pending

This is on .075 MG Levo

[gimel]

Did they draw blood for the tests while you were there?

[carpenter38]

Well I got the lab ordered the way you guys suggested me to. Finally. Will report back when I get the results.  

[carpenter38]

Thanks guys. Helps a ton!!

[Barb135]

Sorry I wasn't able to respond right away... while I'm often late for the party, I usually do show up, eventually... lol

I agree with gimel's comments.  

I know you said they keep mentioning TSH when they talk about your labs, but have they done any FT3 and FT4 tests at all?  If so, why not post what they've done, so we can get an idea of where you are/where you've been. Don't forget reference ranges, as those vary lab to lab and have to come from your own report.

There are some people who are dead set against generic levo, but there's really nothing wrong with it... I actually did better on it than I did on Synthroid.  I agree that Armour might be a possibility, as would cytomel or generic liothyronine since you're already on synthetic T4, but we'd have to know what your FT3/FT4 are to know that you even need a T3 med.

I think if your doctor refuses to test the FT3, along with FT4 and TSH, you should seriously think about looking for another one, who is better trained in thyroid testing/treatment.  You should also make it clear that you want to talk to the doctor, not the assistant all the time, especially if the assistant has an issue with simple communication.

[gimel]

Barb may not be around right now, so I thought I would give you my opinion about what tests you should request to be done.  If they resist, then you should insist on them and don't take no for an answer.  I would test for Free T4 and Free T3.  Likely the doctor will also run TSH since that seems to be important to him.  Since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, you should also request those.  

Not sure how long the doctor is making you wait for follow-up tests, but 4-5 weeks is adequate for the T4 to be fully effective on serum levels.  That would speed things up if you re-tested every 4-5 weeks.  

Not sure why Levo would be a problem.  Synthroid has the same T4 in it, but maybe different binders/fillers/dyes.  Armour might be an option if you find that your body is not adequately converting T4 to T3, and your Free T3 level is lagging behind changes in your Free T4 level.  Free T3 is most important because it correlates best with hypo symptoms, while Free T4 and TSH do not correlate at all.

So I would insist on the tests I mentioned.  I would also insist on 4-5 week followup testing.  I would also mention that you want to be treated clinically, based on symptoms as well as serum levels of Free T3 and free T4.  

[carpenter38]

Bump. Anyone?

[carpenter38]

Sorry I never responded back then.  Fast forward 5 or so months and today I am going to have blood lab done to see how I am responding to 75 MCG of levo. I have grown increasingly frustrated about the whole process of going back in and being tested because it always ends up with me filling out a questionnaire about how I am feeling and I never am good at taking those types of tests. Then we end up talking more about my diet than about my thyroid and it urks me. When I go get my labs done it is not the fasted type like it was originally.  When the results come in I usually get a call from her assistant who can barely even spit out a sentence correctly and she says that my TSH is still lower than they like to see but improving, then they bump me up the 25MCG and tell me to report back after three cycles.  This leads me to believe that they are ONLY looking at TSH, which after reading on this forum is a huge red flag.  

  I have bumped into numerous people with Thyroid and or Hashimotos and they all cringe when I tell them I am on Levo.  They tell me to demand that I am put on Synthrol? Synthroid? Or Armour. Telling me that they spent years in the dark on just Levo. Yet I just do not know how to communicate anything to my doctor.  And once I am out the door, good luck talking to her because her assistant always does the talking....grrr.

I guess the reason I came on here today was to ask you guys what questions I should be asking the doctor when I go in and get theses labs done.  After 5 months I feel a difference but only slight and then it goes away and I feel the same. I know the process is slow but am I making it even slower by not asking questions and demanding certain things be done??  

Any advice would be helpful.

Thanks!

[Barb135]

Well, I have to say, you have more fortitude than I do... I wouldn't even have tried one day without my coffee.  

While I understand that the doctor wants you completely off the caffeine, maybe you could try the coffee that has only half the caffeine - I think Folger's calls it "Half Caff" and Maxwell House calls it "Lite"... I've been drinking those for years, because too much caffeine cause unwanted symptoms.

Withdrawals can cause severe headaches and other symptoms...  I'd have thought your doctor would have had you taper down on both the sugar and caffeine, instead of cold turkey, in order to help alleviate those.  I'm not having a real warm, fuzzy feeling about her.  

Studies have shown that caffeine does have health benefits.

[carpenter38]

well day 3 on this diet and I would be fine if I could just have my morning coffee.  I am going through sugar, caffeine, and god only knows what other withdrawals, and all I can say is that it is the worst feeling. EVER.  I called and left a message to ask if the whole coffee thing is really of utmost importance right now...  So am waiting to hear back.  I never knew how much coffee kept me in the game.  I just feel completely sidelined right now....

[Barb135]

Yes, TPOab is one of the thyroid antibody tests I was referring to and a result of 2786 would definitely qualify for a diagnosis of Hashimoto's.  There's another one called Thyroglobulin Antibodies (TgAb) that we, typically, recommend at the same time or with only slightly elevated TPOab, but with a result like yours, I wouldn't bother.

You're right about eating healthy- it's good for all of us.  Ouch - $400 is a lot to spend for one month.  The problem is, that dairy and whole grains are actually part of a healthy diet for those of us who don't have sensitivity and eliminating them without a real need can actually cause a sensitivity as well as vitamin/mineral deficiencies.   Dairy is chock full of calcium, protein, vitamin B-12 and other nutrients and people who don't eat dairy often find themselves deficient in these, as well as other, nutrients. Whole grains are excellent sources of protein and fiber and other nutrients, as well.  

Please don't misunderstand... since you're already prepared to do the diet, of course, I'd not try to discourage you.  Just be aware of the possibility of deficiencies and you should probably ask your doctor to go ahead and test for vitamin B-12 to make sure you have plenty to start with.  Just being in the normal range isn't good enough.

B-12 deficiency can cause the most horrific fatigue you can ever imagine and even after levels are back to normal, the fatigue can be very difficult to overcome.  Prevention is always the best plan of attack.  

I'll be anxious to hear how the diet goes.

[carpenter38]

after looking at my lab results further I found this....

Thyroid Perox Ab, TPO which is 2,786 with an (H) next to it. Range is supposed to be <=34. Is this the antibodies test you were referring to?

[carpenter38]

Thank you for responding Barb.  Yes you were right I had the ranges backwards Total T3 was 60-181.  Thyroid antibodies is next on the list of things to do.  

As far as the elimination diet I have already gone out and spent $400 on the stuff so I am going to do it.  It will only be a slight change in my current diet and will actually be adding things that I have been wanting to add already.  If things get too overbearing I will just hold off till a later time. Eating healthy can only be to my benefit at this point.  I think the drs intention in my case is to lower the cholesterol as well as treat the thyroid.  It is only a month and it can't get any worse...lol  

  Honestly I am just glad that all of these symptoms I have had throughout the years, has a name and I have been right all along in knowing something was wrong.

Thanks again and I will report back when I can.

[Barb135]

I think you meant the range for your Free T4 was 0.8-1.8, rather than the Free T3?

Obviously, your TSH is way too high, and your FT4 is too low in the range, so your doctor did the right thing starting you on the med.  You're right that we do look for FT3 rather than TT3, but we'd still like to see the range on that, even though it's not so useful.  Your TT3 looks to be pretty low in its range, as well, indicating that FT3 be also.

All of your symptoms are those of hypothyroidism, including GI issues.  I really wish the doctor would have left well enough alone until the med had done its work, then if you still had problems, you could have tried the elimination diet.  Many of us have/had GI issues when hypo and symptoms were relieve simply by getting FT3/FT4 levels up where we need them.

It takes 4-6 weeks for the medication to reach full potential in your blood, then it often takes longer for your body to "get well".  Most of the time, your initial dosage is not your final dosage.  Your doctor must willing to increase dosage as needed to relive symptoms.

Also bear in mind that it's not the least unusual for symptoms to worsen or for new ones to appear when one first starts a thyroid medication or changes dosage, as it takes the body time to adjust to having hormones its been doing without.

Have you been test for thyroid antibodies to determine if you have Hashimoto's?  If not, you should talk to your doctor about that.  

[carpenter38]

for tsh the ranges were (0.50-4.20)
Free T3 was (0.8-1.8)

and after reading have realized that total T4 is not what people look at so nevermind that.