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  • SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyroxine?

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    Old 07-07-2008, 12:13 PM   #1
    balckbeauty
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    SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyroxine?

    Any comments. My FT4 is 0.71 The low end of normal is 0.82 My TSH is 0.98 within range but on the low end of normal. My primary PCP put me on 25 mcg of levothyroxine which raised my FT4 to 0.79 and knocked my TSH down to 0.64 within 30 days. Seen an endo. who ran all the antibody tests and all came back negative so he wants me to stop levothyroxine for 2 mos and have a FT4 equilibrium dialysis, FT3 and TSH done. He is sure my thyroid is functioning fine but wants these tests to confirm. He says he does not rely on the regular FT4 test it is not as accurate as the FT4 equilibrium dialysis.
    I did mention I was concerned about my TSH being on the low side and thought when the FT4 is low the TSH should be higher. I have read in several articles that if you have a low FT4 and a TSH below 1.0 you may have secondary hypo. due to a pituitary problem. My endo. says NO, 0.98 is within the normal range. So, what do you all think, I feel soooo much better on just the 25 mcg. and really do not want to quit taking the levothyroxine for a recheck on my thyroid but he insists. HELP!!!!!!!!!!!!!!!!!! ANY SUGGESTIONS?????

     
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    Old 07-07-2008, 01:41 PM   #2
    T4T3hell
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Not sure why your doctor is insisting on doing the equilibrium test, but---
    I've read that this test has been used to help distinguish true hypothyroidism from the effects of altered thyroid hormone binding that may occur in critically ill patients.

    You don't sound like a critically ill or elderly patient---I found this information in a "endocrinology of aging---post-menopausal women" section of a site about endocrinology.

    On the other hand---I think you may suffer from secondary hypothyroidism. I just picked up a brochure about thyroid diorders from the lab and they have a table indicating:

    Low TSH, low or normal T4 (and low or normal T3) leads to a possible diagnosis of "Rare" pituitary (secondary) hypothyroidism.

    I have Hashimoto's and also (finally got diagnosed with) secondary hypothyroidism.

    I've found that too many endos don't know what they are doing. I had to travel out of state to get a diagnosis---local doctors rejected that dx---so I had to travel out of state again, to find a doctor who knew what they were doing. I don't live in a small town---we have quite a few endos here---but none of them knew what they were doing when it came to more complex neuro-endo stuff.

    I'd look for a new doctor---and keep taking the synthroid---I know how miserable you can feel when you don't have what you need.

    Good luck.

     
    Old 07-07-2008, 06:15 PM   #3
    balckbeauty
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Thank you so much for your reply T4T3hell. I dont think I am critically ill,
    I do have MS. I was diagnosed a couple of years ago. I have also been diagnosed with polyneuropathy, they are thinking due to an area of my spinal cord that has degenerated, due to the ms? they are not quite sure. My report says inflammation of the spinal cord could possibly cause polyneuropthy. I have never had an FT3 done. If one has secondary hypothyroid will the TSH, FT4 and FT3 all come back low? My TSH was still within range so I think that is why my endo. wasnt so concerned. My goodnes,, how does one actually get diagnosed with a pituitary problem besides the MRI showing something and I have even heard that it's hard to see then most of the time. I AM SOOOO CONFUSED!!

     
    Old 07-07-2008, 06:33 PM   #4
    m. m.
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    balckbeauty,

    I was diagnosed with secondary hypo with a tsh of .78 (.34-5.6), FT4 .76 (.5-1.5) and FT3 3.2 (2.5-3.9). All my numbers were in the "normal" range. It was the abnormal relationship between the tsh and FT4 and my symptoms that led to this diagnosis. And, my tsh and FT4 kept falling together. Generally, with a tsh in that low normal range, I should have a much higher FT4 level and as FT4 drops, tsh should rise - that wasn't happening for me. I do not have any pituitary tumors or disease.....just a sluggish pituitary gland or hypothalamus according to my doc. I take Armour now.

     
    Old 07-07-2008, 07:06 PM   #5
    T4T3hell
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    BB...
    Sorry you're dealing with MS on top of everything else.
    It can be very complicated---but like m.m. says---seeing how things "react" with one another can be a clue as to what is going on.
    Have they ever considered other endocrine problems?
    I know of people who have experienced bone degeneration due to high cortisol levels. I know if your thyroid levels are too low---your adrenals can get pushed to make up for the low thyroid---and they produce cortisol----which causes problems for bones and other organs.
    You might consider going to a research/teaching hospital---sometimes you need to get a team of doctors looking at things.
    Good luck.

     
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    Old 07-07-2008, 08:33 PM   #6
    balckbeauty
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    m.m. and FT4FT3hell Can I ask what your symptoms were? I actually asked my Dr. to check my thyroid because for the last year I have noticed my joints and muscles will just ache as if I have arthritis all over my body.
    I have noticed more fatigue and will just feel these waves of weakness come over me. I have extreme problems right before my period - the weakness becomes almost unbearable along with more joint and muscle pain. I also get soooo dizzy I feel as if I'm going to pass out. My life comes to a hault right before and during my period. I told my endo. about this and he said "well, that just means that you are ovulating" WHAT???? I honestly think there is something going on with my pituitary, I do think I will go off the levothyroxine for the two months and have the FT4 equilibrium dialysis, FT3 and TSH done. Maybe, HOPEFULLY, these tests will show something!!!
    I am very anxious to hear if you have or had any of the same symptoms I do.
    Thanks so much!!!!!

     
    Old 07-08-2008, 06:41 PM   #7
    T4T3hell
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    When my period started---it was extremely heavy---and wouldn't let up.
    I had to change pads every 15 minutes.
    I think your doctor wants to make sure what all is going on. Some of us have very difficult puzzles---I hope you get the answers to your puzzle.
    Keep us posted.

     
    Old 07-08-2008, 07:34 PM   #8
    m. m.
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    I am sorry you are feeling bad right now and hope you get to feeling better soon.

    I can't say all my symptoms were/are from hypothryoidism directly or other deficiencies possibly caused by slowed digestion from being hypo (ferritin, vitamin D and several b-vitamins) or something unrelated. My main complaints were major fatigue, brain fog, episodes of feeling drugged (not really dizzy just drugged feeling), hair loss, skin changes (pigmentation and acne), cold all the time, weight loss/no appetite, hives that come and go, depressed mood, lack of motivation, apathetic. stiff achey muscles (mostly back, neck and low back). I never had any issues with my cycle being irregular or heavy. My PMS isn't pleasant but nothing out of the ordinary.

    If you have not had your Ferritin (iron stores), Vitamin D and B-12 checked, you should. A Vitamin D deficiency can cause muscle/joint problems and Ferritin/B-12 are often times low in hypothyroidism. B-12 is important in muscle/nerve function too. In fact, the active form of B-12 (methylcobalamin) is quite effective in treating polyneuropathies and inflammatory demyelinating polyneuropathy.

    I don't know the lab ranges for your FT4 but if it's similar to mine, you are definitely deficient in thryoid hormones right now for some reason. I think it's a good idea to proceed with the additional thryoid testing or at a minimum do thryoid hormone replacement. Also, ask for the Ferritin, B12 and Vit D testing. Do not assume that results in the "normal" range are normal on these things even if a doctor tells you so. If you do get these tested, post the results on this board and people will help you interpret them.

    Another thought is to have your thyroid antibodies checked if you haven't already to see if you have Autoimmune Thyroid Disease. People with Autoimmune Disorders have a tendency to develop more than one. With your MS, it seems like a logical thing to check.

     
    Old 07-09-2008, 07:38 AM   #9
    balckbeauty
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Thank you so much for your replies. I have had my ferritin checked, about a year and a half ago it was 51 - i started iron supplements and in april of this year when my FT4 had dropped to 0.71 my ferritin had jumped to 96 so i do believe it is ok. when my ferritin was low my FT4 was higher. HUM My B12 is fine also and I do occasionally recieve B12 shots due to my MS so all is good in that area also. I will post my lab results here:

    TSH
    March 2005 0.511
    June 2006 1.15
    Dec 2006 1.10
    April 2008 0.98

    FT4
    June 2006 1.06
    Dec 2006 0.82
    April 2008 0.71 low end of normal is 0.82
    As you can see I have never had a FT3 test done.
    I do beleive my TSH and my FT4 just keep dropping. I brought this to my endos attention and he said but your TSH is still in range and your FT4 is only slightly out of range. I have had all the antibody testing done and all came back normal, I have asked for a copy of the report, I am yet to get it.
    I personally think its odd that my numbers just keep dropping and I am sooooo
    symptomatic yet my endo. thinks all is fine. I am going off my levo. for two months and am being retested FT4 equilibrium dialysis, FT3, TSH.
    Hopefully something will show.
    Any opinions on my labs?
    Thank you so much for your help.

    My symptoms do sound very similar to yours. Waves of extreme weakenss, periods of feeling as if I have been sedated, I can just sleep and sleep when this happens. Very bad muscle and joint pain especially around my period time. Around that time of the month I can hardly function it gets soooo bad.
    I will have dizzy episodes where I actually think I am going to pass out, my joint and muscles become very bad, my periods have gotten heavier and more sporadic, my hair is super thin and I do not have any outer eyebrows left... but according to my endo. my FT4 is only minimally low.

     
    Old 07-09-2008, 11:03 AM   #10
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Balakbeauty....................All the symptoms you have are just classic hypothyroidism symptoms. You need a FT3 test also. And just being in range with your free T's is not good enough. If you don't want to have all the symptoms they should be in the upper third of range [at least 60 - 70 % of range). I have been hypo for over 30 yrs. and my TSH has never been over 1.4 even when my freeT's were at bottom of range.

     
    Old 07-09-2008, 11:49 AM   #11
    balckbeauty
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Thank you all so much for replying. Well, I have just gotten my antibody results. I now post them. I hope you all can help me interpret them.

    Thyroid-Stimulating Immunoglobulin 1.1 f Reference: (<1.3)
    Thyrotropin Receptor Antibody 6 f Reference: (<10)

    It also says Refernece Range for TSI:
    Less than 1.3 .... Not detected
    1.3 - 1.5 ........ Indeterminate
    Greater than 1.5 ..... Detected


    Units
    Thyroglobulin Antibody 14 U Refernece (0-78)
    Thyroid Peroxidase Antibody (TPO) 29 U Reference (0-100)

    Reference Range for Thyrotropin Receotor Antibody:
    Less than 10% ..... Not detected
    10 - 15 % .... Indeterminate
    Greater than 15% ..... Detected

    So, there you have it. My endo. said all of my test are perfectly NORMAL.
    ARE THEY??????
    Thanks!!

     
    Old 07-09-2008, 04:01 PM   #12
    T4T3hell
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Quote:
    Originally Posted by balckbeauty View Post
    Thank you so much for your replies. I have had my ferritin checked, about a year and a half ago it was 51 - i started iron supplements and in april of this year when my FT4 had dropped to 0.71 my ferritin had jumped to 96 so i do believe it is ok. when my ferritin was low my FT4 was higher. HUM My B12 is fine also and I do occasionally recieve B12 shots due to my MS so all is good in that area also. I will post my lab results here:

    TSH
    March 2005 0.511
    June 2006 1.15
    Dec 2006 1.10
    April 2008 0.98

    FT4
    June 2006 1.06
    Dec 2006 0.82
    April 2008 0.71 low end of normal is 0.82
    As you can see I have never had a FT3 test done.
    I do beleive my TSH and my FT4 just keep dropping. I brought this to my endos attention and he said but your TSH is still in range and your FT4 is only slightly out of range. I have had all the antibody testing done and all came back normal, I have asked for a copy of the report, I am yet to get it.
    I personally think its odd that my numbers just keep dropping and I am sooooo
    symptomatic yet my endo. thinks all is fine. I am going off my levo. for two months and am being retested FT4 equilibrium dialysis, FT3, TSH.
    Hopefully something will show.
    Any opinions on my labs?
    Thank you so much for your help.

    My symptoms do sound very similar to yours. Waves of extreme weakenss, periods of feeling as if I have been sedated, I can just sleep and sleep when this happens. Very bad muscle and joint pain especially around my period time. Around that time of the month I can hardly function it gets soooo bad.
    I will have dizzy episodes where I actually think I am going to pass out, my joint and muscles become very bad, my periods have gotten heavier and more sporadic, my hair is super thin and I do not have any outer eyebrows left... but according to my endo. my FT4 is only minimally low.
    That's a big clue that something is wrong. Not the only one, but one that your doctor should be able to see.

    Has your hair gone prematurely gray? I've heard that is another "clue"---but one that none of my doctors ever thought much about.

     
    Old 07-09-2008, 07:44 PM   #13
    balckbeauty
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    I am starting to think my endo. might be quacko. I have been reading up on the TPO Antibodies. I have read in several different articles that a person should have 0 on this test. If you have antibodies in any range you have antibodies!!!! which is indicative of hashamotos. He really doesnt care about the eyebrows, the joint aches, the heavy and irradic menstural cycles.... He is only going by the numbers on the labs. And I guess a minimally low FT4 is not enough. In his opinion it must have to be really low!
    I am a bit concerned about the antibody stuff now.

     
    Old 07-09-2008, 08:44 PM   #14
    T4T3hell
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Me and my fellow sufferers call them "endiots".
    Another term of endearment (not) is dumb donkey doctors. They are stubborn and make a racket when you don't agree with them. Ugh...Endocrinology is very complex---and there hasn't been a whole lot of research in more complex issues---including thyroid! One doctor told me that if I had thyroid problems---then one pill a day would "cure" me.

    Too many endos are much more interested in diabetes---in fact---in a lot of offices---that's all you see as far as patient literature and posters...

    I think that's where the easy money is.

    I've also been stunned by the endo's "diet" recommendations. I would weigh a ton if I ate the stuff they say I should---and in the quantities they recommend.

    Good luck with everything.

     
    Old 07-10-2008, 07:21 AM   #15
    balckbeauty
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    Re: SECONDARY HYPOTHYROIDISM? Low FT4 and low TSH Should I stop taking my levothyrox

    Thank you so much T4T3hell. I guess I'm off to a two month levothyroxine back off. I will go in to have everything retested then. Maybe I will find out a little more then. I'll keep you all posted. In the meantime TAKE CARE!!!!!

     
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