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Help...got some results and still out of range:(

So I finally convinced my Dr to test a few things other than the TSH.  I managed to slip by the provincial guidelines and they tested the t4.

april09  TSH 1.32
Jan10   TSH 4.12
Mar10   TSH 2.65
Mar10  T4FREE    10 (9-22 pmol/l)

I am awaiting the results of the antibody test but for the life of me I can not remember where you want your T4 to fall?? Am I in the right place? I know according to the ENDO Society I fall within their normal ranges for TSH now. But should your TSH jump around so much like that? seems like quite a fluctuation if a normal range is 1ish.  
Any help would be great:)
thanks in advance for any help you can offer...
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Avatar universal
That message was for bugaboo by the way
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Avatar universal
Hope you return to read this. Get tested for celiac. I am overweight and tall and in my 40s and had very similar symptoms and thyroid results to yours, and was exhausted. Thyroid meds did not help. After years of fatigue and dry skin and many other thyroid symptoms by chance I was screened for celiac (when a relative was diagnosed). It was the celiac causing the problems all along. Red flag for celiac: low cholesterol despite low thyroid function. Look into it. Good luck.
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1222861 tn?1267287188
Well, don't get discouraged.  This thyroid thing can be so wacky, even with good help you never seem to get it right.  Why do you think we need these boards!   Patience is a virtue.  Something I sadly lack.  

*Do you fast before your labtests?  Maybe that would  make a difference in your lab results?  Do them first thing in the morning, no food or drink except water for 10hrs prior.  maybe that will help?    

My first doc who knew I had a family history of Thyroid problems, (my mom, my sister and my brother) that told me I was borderline, wanted to treat me for depression but would not treat me for thyroid.  I refused to take the Zoloft he prescribed....Some doctors are just dumb.  

Then my Vancouver doc went on TSH results.  But he is now testing for everything now and listening to me too.  My very first lab results he said my TSH was 14.00 which is why he put me on meds.  I was never told again what my levels were & I never asked.  I never got better right away when I was put on meds, then my labs started to show high cholesterol too.  My doc and I would argue about my diet and I would tell him I was eating better than his stupid little food chart and I told him all I needed was a higher level of medication but he just wouldn't prescribe me more.  So I increased them on my own and instantly got better.  I lost 30lbs in about 2months.  When I went back and saw him I looked great and we did new labs and my doc could see with his own eyes that I was healthy plus my lab levels were way better too.  He instantly said, see you are eating better like I told you too and you are all healthy again.  And then I had to confess that no, that has nothing to do with it, I doubled my meds and that is why I am better.  Of course he was not happy about this, basically, I proved him wrong to get the help I needed.  It worked for me but would not recommend that anyone do this.  I felt desperate times called for desperate measures and I really didn't feel like I was being helped.  My doc now understands that I am very in tune with my body and we work together to make me feel good.  It took us some time to get to this happy place though.  

Then last Dec I went off my meds completely.  I was on Naturethroid and it didn't seem to work at all for me.  I was so frustrated, here I was all excited that I finally got my dr to prescribe a Natural Thyroid med  and it does nothing, in fact I got really hypo on the meds and put on 20lbs in about 2wks.  I think maybe I got a bad batch or something. I don't know for sure.   My Jan labtest results were absolutely awful,

my TSH was 66.00   ref range 0.40-2.50
      Free T3  1.50                   1.80-4.2
      Free T4 <0.4                    0.9 -1.8
      RT3       <9.0                   9.0-35.0

So now I am on an Eltroxin 100 & Cytomel 25 combo.  I am starting to feel better but I guess my lab tests we did last week will show where I have levelled off at.  So its back to square one for me again.  

If all else fails maybe you could go to the health food store and talk to them, sometimes  iodine or sea kelp can help hypo symptoms.  Cheers....c
        
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Avatar universal
I feel somewhat confused as I got back my antithyroid peroxidase Ab test back and it says <10 (<36) which confirms there is not any kind of autoimmune thyroid disease.  I really thought this might explain all the symptoms and then my Dr would think about treatment.  I am assuming this is the test for Hashi's and since that is negative I will continue looking for something else for the cause of all my symptoms. At this point I wait for the ultrasound, but I am very good at producing normal tests so I am not sure that will show much either.
sometimes you just need answers and I am so frustrated with everything all being so normal:(
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Avatar universal
Bugaboo52, I can relate to you because according to my endo doctor, my tests are in the normal range (free t4-1.35, t3-101, tsh3-0.311) also and  won't give me any medication. She says that the medications can be more dangerous than the disease.  Last year, I was hyper and my doctor wanted me to have that RAI treatment that I was uncomfortable with so I refused. Now, this year, my thyroid is normal and I have never been on any meds. Is it a miracle?  I have been complaining of extreme fatigue, tingling in hands, arms and feet, unexplained weight loss, anxiety, heart palpitations, jaw pain and depression for years. I also have a nodule but it is cancer free. I have had a physical recently with my primary care doc and passed with flying colors. Because of unexplained tingling, heart palpitations and jaw pain, I was given a thallium stress test and passed that with flying colors. No one can tell me what is going on as to why I have been feeling this way for so long.  I have decided to seek a 2nd endo opinion because I don't know what else to do.
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Avatar universal
I would definitely drive out to the city if I thought I would be treated.  I am just waiting on antibody test results (which I should get monday or tuesday) and then I will know what I am dealing with. I am going to go to my Dr regardless of how the antibody test comes back and ask her to treat me for my symptoms, not sure how that will go. It isnt easy to jump from one family dr to another in a small town and though I think she is a good Dr, she is not experienced in thyroid matters.  It is really frustrating getting into specialists when you are being referred from out of town.  I will also be following this all up with my rheumatologist when I see her in May.  I am hoping she can take a look and treat me if My family dr will not. Either way I just need to know that my numbers would warrant treatment.  Were you diagnosed based on your TSH? Did you get out of range? I am almost envious of people that manage to get out of the reference ranges, it seems their fight for treatment ends:(   It isnt like I want a thyroid problem but I truly believe I have one and I just want to feel better.
As to getting the labs done...the first free T4 test she asked for was not run as my TSH wasnt out of range and so the lab wouldnt run it. I called the lab and they explained that msp just wont authorize it without a good reason.  However, I went back to the Dr and she marked off that it was a special case (due to a positive ANA) and they did run it this time.
Right now I have the worst ear and jaw pain...sigh...going on 3 years with this symptom..I have seen an ENT twice (took 6 months for those appt) and he tells me I have muscle spasms in my neck and physio has not helped both times.  I am not going to bother trying that route again.
So thanks for your reply and I will update with antibody results in the next couple days.  Not sure what to hope for anymore;)
Oh and if I cannot get treatment through my dr's I am going to try a naturopath in langley that was on the top doc website.  That kind of treatment can get very expensive.
thanks again, good to know I have a local with some experience!
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1222861 tn?1267287188
Oh dear...I hear your pain...It took me about 6yrs to get diagnosed properly.  I used to be on Vancouver Island and even though I have a family history of thyroid problems and I almost doubled my size in a short period of time my doctor at the time said "I was borderline" and would not medicate me.  Of course I never actually saw the results.  

When I moved to North Van I had to find a new doctor and he tested me  and put me on Synthroid right away.  I was so relieved that there was something wrong with me and was so hopeful that everything would be normal again when I was finally medicated but still I did not see results immediately.  It has been over 10yrs now and its still a battle trying to find the right medication combination.  With me it seems cyclical, I will be back to normal weight range for a couple years and then relapse back...I have chg'd meds a few times now.  From Synthroid to Eltroxin...both T4 meds.  Then I went on NatureThroid a T1, 2, 3 & 4 med which did not work for me at all..(bad batch I don't know)  most recently I have been put on an Eltroxin T4 / Cytomel T3 combination.   So its back to square one again.  

The Naturopath I saw in Jan this year also did an adrenal stress index test on me and found that my adrenals are weak and that I am also Insulin Resistant so this has prompted me to go back to my medical doc with these results I paid for myself and he has just run a whole new series of his own tests.     I am going to have him check me for Cushings next to rule that in/out....

I have family members scattered all over the province with Thyroid problems too (Chilliwack Kamloops & Prince George) and they have the same complaint as you do.  They have nothing but problems getting proper treatment or getting in to see specialists.  They say it takes forever.  They are always amazed that I am continuously getting help.  I keep on telling them they need to be more proactive.  Obvioulsy this is much more difficult when you are in a smaller community and less resources are available to you.  

I have actually printed out articles for my doctor for him to read and he has also educated himself more in the process to help me and together hopefully we will come up with a solution so I feel like myself again.  I guess its not easy to find a doctor like that, one that listens.  I suppose I am lucky.    They are out there though.    

Does your Doctor listen to you?  Have you said to her, I want you to treat my symptoms & not my numbers?  Or why aren't you doing a full Thyroid Panel?  maybe she does not know any better? I mean all it takes is for her to make some notes on that Lifelabs sheet...instead of simpy ticking off TSH she needs to make notes as well to the lab to also check your T3, T4, Free T3 & Free T4

I hope you get thru to her...or find another doc that does.   It will make a difference and maybe its worth a drive into the city?

All the best, C
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Avatar universal
Wow, well first off thank you for your reply.  I am only going by what I have been told by my dr. and by what I read online from the bc government health website. All the guidelines for diagnosis are on there, and I do not fit into the guidelines.  Are you already diagnosed as hypothyroid? I am not, and my Dr seems to be limited to what she can run without getting out of range on the TSH.  I am about an hour out of vancouver and it took me nine months to get into a rheumatologist and I was told the wait was longer for an endo and with my numbers I do not forsee getting rushed in.
if you want your test results then you have to either request from your dr or ask for them as you are getting tested.  As they are typing up the requisition they will mark that you want a patient copy and then you pick them up or they will mail them to you.  I am not sure if it is because I live out of vancouver but any specialist I have been referred to takes a minimum of 6 months.  I have an ultrasound booked for 3 months from now at our local hospital...so I think it has a lot to do with location. It bothers me that you have had no problems getting all those tests run...seems like a run around on this end of the valley:(  My niece was just diagnosed in Alberta with similar numbers to mine and is already on synthroid.....so frustrating that we are in the same country and 11 hours away and she gets treatment and I am told how normal I am.
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1222861 tn?1267287188
Hi Bugaboo52 -

I just wanted to let you know that I live in BC and am hypothyroid.  My doctor runs tests for TSH, T3, Free T3 Free T4.  I actually had new tests done just yesterday that also included, H1ACb, Glucose & FSH.  If your doctor is not running the right tests maybe you should find one that will?  I have found though that we never seem to get a copy of our results.  I am going to ask for a copy of these latest results so I can monitor my health even better.  It does not take long to get the results back either, I expect my docs office will call me within a week and I had a lot of things tested in addition to my Thyroid.      

My doc he has also sent me to a couple endos in the past when he felt things were beyond his scope but personally I found my Dr and I worked better together and felt the endos were absolutely useless.  Maybe there are better ones in your area but in my personal experience the Endos in North Vancouver are really bad.  It did not take long to get into an endo either, maybe a couple weeks?   So its not as bad as you think out there.

I also went and saw a Naturopath in January of  this year and had tests done at my own expense - the cost was $520.  for a full Thyroid assessment.  So you can always go that route too... One good thing is that you get a copy of the results when you pay for them.  

If you really like your doctor, then I would recommend that you get proactive in your healthcare and learn as much as you can about your illness and try to educate your doctor so she can help you.  You only have to worry about your illness and your doctor has to worry about everyones.  My doctor was open to that but I suppose not all are....We tend to forget that doctors are simply practicing medicine they are not healers.  Their job is to assist us.  

Good Luck and Good Health!  C    
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Avatar universal
I should have added that that's a bit of an unusual range for FT4???
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Avatar universal
Your FT4 is fairly low in the range...bottom quarter.  TSH is in range (currently accepted range according to AACE is 0.3-3.0), but fairly high in the range.  Both of these lean toward hypo.

Have you ever had antibodies tested (TPOab and TGab) to see if you are in the initial stages of an autoimmune thyroid disease?  How long has it been since your third?
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Avatar universal
from reading this thread i'm starting to wonder....

i was diagnosed with hyperthyroid when iw as pregnant with my 2nd child.  then i was in normal range but on the cusp of hyper in between pregnancies until my 3rd came along and i fell below again.  i've been having my levels tested yearly and they're "normal" but on the cusp.

until recently...i've started gaining weight without much change in the way i eat, i get hotflashes, palpatations, my cycles have become funky....and now my latest labs:

free t4 1.1 (the reference range on the form i got ws .6-2.7)
tsh 3rd generation 2.59 (range on form .40-4.20)

can someone shed some insight?
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Avatar universal
No, you can't just walk in, but you could get one of those online labs to order from a U.S. lab in Washington.  I have a tendency to think that going to a lab and having blood drawn probably yields more accurate results than the kit option.  I believe I've seen an online package (FT3, FT4 and TSH) for around $150, but that was a while ago, so don't quote me.  I actually did my very first TSH test online with a kit.  It told me I was pretty hypo, and it was very right!  So, the online service will send you to a lab with orders for thyroid labs, you go in and have your blood drawn, and then they send you, rather than your doctor, the results.
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Avatar universal
I am about 30 minutes from washington state. I am not sure how I would go about getting a lab to test me in the US.  Can you just walk into a lab and request any tests??Is it expensive to test for thyroid?  I have no clue.
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Avatar universal
Most often, doctors start us off on T4-only meds (like Synthroid, Levoxyl, generic levothyroxine, etc.).  I'm not sure which brands are available in Canada.  I believe this is a reasonable approach,  If T4-only meds don't relieve symptoms completely, then you can think about adding some synthetic T3 (like Cytomel) or switching to dessicated, which contains both T3 and T4.  There are other more esoteric options, but these are the basics.

You can also get FT3, FT4 and TSH testing online.  Some send you a kit, and you stick your finger and send it back to them.  Others order the tests through your local lab (don't know about Canada, once again), but you pay for them and they send you the results directly.

I don't know where you are in BC, but are you close enough to us a U.S. lab?  We find that here in the States, the medical market will do about anything you ask for cash (up front, please!).  Sorry to sound jaded, but our system is a wreck...
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Avatar universal
I am not on anything...cause I am so "normal".  I am going to go back this week to ask my family doctor for some kind of med but honestly I am not sure how she is going to deal with it.  I think she might try it but now that my TSH is so "normal" I am more doubtful I will get some kind of treatment. I am pinning my hope on the antibody test.  I think to get into an endo would take about 9 months to a year...and I do not for see getting a referral with my labs.  I live in the wrong province to get treatment for a thyroid problem.  
So if I ask for meds which would be a good one? I am in Canada and I have no idea what is available or appropriate? As my Dr is probably a little out of her area of expertise if I ask for something in particular she might go along with it.  
thank you so much for all the replies, it is so frustrating dealing with this.  
I was actually told at the hospital lab that if my family Dr had requested the Free T3 there would have been problems and all the tests would have been held up.  Are these tests expensive to run? I am thinking of trying to find a private lab and getting the tests run on my own.  I know of one in alberta but have never heard of such a thing in BC.  
thanks again:)
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Avatar universal
So, you're not on meds at all yet?  Your low FT4 and symptoms definitely sound hypo.

FT3 is very important, but that aside for a moment, your FT4 still warrants meds. Best of luck (I guess you can term it that!) with the antibodies...hope you can get the referral.  If not, do you think you could talk your PCP into a low trial dose to see if it relieves your symptoms?  Nothing to lose here...you can always d/c if it doesn't help...
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Avatar universal
Just as I typed the above message I was heading for a nap because I was so tired...I have all the hypo symptoms generally but this week I am feeling a little nervous, jittery, tingling under my skin, heart palps (just a few) but incredible fatigue.  I have almost every hypo symptom I have ever read online (except high cholesterol) but all have them have come and gone at different times....the constants are the fatigue, joint and muscle pain, heavy legs and weekness, difficulty breathing, sore throat, wake up feeling tired, snoring, dry skin and really dry heels, loss of libido, cold all day, night sweats, low body temp, sinus infections...
I am just waiting on the antibodies test.  I am a little frustrated with our medical system.  the only way I get a T3 test is if I can get into a endo and that is not going to happen unless my antibodies come back positive. My numbers are too normal and I will not get a referral without numbers that warrant a specialist.  I am stuck without abnormal numbers. :(
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Avatar universal
Actually, currently accepted reference range for TSH according to AACE is 0.3-3.0.  So, now, you are high "normal", but in January, you were above "normal".

FT4 is way too low.  The rule of thumb for FT4 is midrange...yours is in the bottom tenth of the range.  Of course, this depends on symptoms and other medical conditions, general health, etc.  We are all somewhat different and comfortable at different levels.  Do you still have hypo symptoms?

TSH is quite volatile and even varies intraday.  You should have labs drawn at the same time of day each time so that you are comparing apples to apples.

Keep pushing for the FT3 ...it can be such a valuable piece of the puzzle, especially when you establish your own personal history.
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Avatar universal
well you want your FREE T3 to be in the upper range and your free t4 to be in the mid to upper range.most feel better when labs are in this range. the tsh doesn t really matter so much because it is a pituitary hormone and the the frees are the actual thyroid hormones.  maybe you could request strongly a free t3 test too.  
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Avatar universal
I meant to say...got some results and still IN range...
and the reference range for the TSH is 0.3-5.5 mU/L
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