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  • New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

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    Old 03-24-2013, 05:23 PM   #1
    Alainaaaaa
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    New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    New here and new to the world of hypothyroid (unfortunately!). Would love to share my story and have some people in a similar boat to me to talk to.

    My story, in short, is that I have been having all sorts of symptoms for a little while now. Most difficult ones for me are brain fog and fatigue but I've got many more typical hypothyroid symptoms like long cycles, weight gain/can't lose weight, dry skin, sensitivity to cold...

    Not even suspecting anything with my thyroid, I went off the birth control pill about a month and a half ago and about a week and a half after that I was a mess. I woke up one morning with an intense and constant brain fog as well as headaches. I felt like I was in a dream world. I could still go about my day and sort of fake it, but I was far from my usual self. I was also totally exhausted by the end of the day and exhausted even after 8-10 hours of sleep every night.

    Finally, after about a week and a half of that terrible fog, it lifted quite a bit to the point where things are ok now. Not great, but ok.

    During the 10 days of constant brain fog, I saw my doctor and she ordered blood tests. I came back a week later for the results (feeling a bit better at that point, as I mentioned above), and we went over everything and everything was looking ok, until we got to the TSH results.

    TSH was 5.75. I thought I had finally found my answer!!! But wouldn't you know it, my doctor blew me off and told me that her own TSH is in the 5-6 range and that is normal, even though my results was flagged as abnormal. I do live in Canada where 5 or even 5.5 can be considered normal by many doctors, but still, I was outside of that. I knew only a little about hypothyroidism at that point, but I knew enough to ask for free t3 and free t4 testing, which she said no to as it's too expensive and the gov't doesn't want doctors running those tests unless they feel it's necessary, and she did not. I was too confused and unprepared for my results to even be abnormal to argue her, so I left, with her telling me to retest my TSH in 3 months. I should also mention that my cholesterol came out at the high end of normal (don't know the exact number) which I now know is also a sign of hypothyroidism. I am only 31 years old so I don't see why my number would be elevated otherwise. Also, I have been known to have low Vit D in the past (they don't test that for free here in Canada anymore apparently so my doc didn't order it this time), which I have also read is strongly connected to thyroid issues.

    Luckily, I managed to order blood tests myself, so I paid for TSH, free t3, free t4, antibodies and possibly one other test. Got the blood draw Saturday, no results yet.

    So, in short, my TSH came out at 5.75 and my doctor dismissed it as nothing. Top it all off, I had my blood drawn while fasting but at about 2-3pm the first time, which I hear could cause my TSH to be reduced. Luckily, my new blood draw was at 9:30am so I am hopeful it will give me a more accurate number to go back to my doctor with.

    Anyway, I am just really posting to vent and to connect with some other people in similar situations. Thanks so much if you read this far! I appreciate it!

    Last edited by Administrator; 03-24-2013 at 09:58 PM.

     
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    Old 03-24-2013, 06:39 PM   #2
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Seems you've done your homework!

    You appear to indeed have a pretty classical presentation of symptoms, along with high cholesterol and low vitamin D AND high TSH.... Plus you're also right about TSH being higher in the morning. If I may, your doctor is stupid and you need to see someone else.

    I've had tons of problems for over a year and my doctor did test my TSH which was "normal" according to him. I recently learned that my TSH was in fact slightly elevated all this time.

    I'm not saying that we can be 100% certain that hypoT is your problem, but chances are it is. Great call of taking things in your own hands and ordering your TSH, FT4, FT3 and antibodies. Once you get these results I'm fairly confident you'll have a good idea of what's going on with your thyroid and will then be able to take action accordingly.

    Last edited by Administrator; 03-24-2013 at 09:59 PM.

     
    Old 03-24-2013, 07:53 PM   #3
    Alainaaaaa
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Thanks so much for the quick response.


    I have definitely done quite a lot of research in the past while since being told by my doctor that my 5.75 TSH result, which was literally marked in RED by the testing lab, is normal.

    I agree that a new doctor would be ideal but I am having trouble finding one and I am wondering if I will just be in the same position with another doctor who will quite possibly lack knowledge on the topic, too. I am going to wait for my new blood work results, and assuming that they support my theory of being hypothyroid, I am going to go back to my doctor armed with much more evidence this time. If I leave with nothing from her again, I might try to find a naturopath or try to find another doctor again. I am really hoping that she agrees with me and treats me, but I am a bit worried about receiving treatment from a doctor who seems to know so little about hypothyroidism. If she refers me to an endocrinologist I'm also in trouble since I'll have to wait a while for an appointment... seems like a lose-lose situation in so many ways!

    Thanks again for responding... nice to know that someone else understands! Have you been successful at getting any treatment yet? It must be even harder to convince your doctor when you fall in the "normal" range. I am "abnormal" and my doctor STILL doesn't seem to care or understand!

    Last edited by Administrator; 03-24-2013 at 09:57 PM.

     
    Old 03-24-2013, 08:27 PM   #4
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Unfortunately I can't offer much advice since I'm new to thyroid disorders. I have been having some issues with my menstrual cycle the last few months and my doctor ordered a thyroid panel to see if I might have some kind of imbalance causing issues. My TSH came back 5.80 and that's high enough for my doctor to want me to start on medication. From what I'm seeing here and in other sources, the ability to get a diagnosis of hypothyroidism really depends on what doctor you see since they all seem to have their own opinion of what constitutes a "normal" range.

    I had no idea a person could order their own blood tests like this, but I hope you can find a doctor willing to put you on meds. It's lame when doctors just blow us off or try to tell us what we feel.

     
    Old 03-24-2013, 10:06 PM   #5
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    To paraphrase the very wise woman who explained it here some time ago... (with the hope I've interpreted it all correctly)... here goes:

    In someone who takes levothyroxine for hypothyroidism, some of that exogenous T4 converts to T3 in the liver. Higher blood levels of T3 drop the thyrotropin-releasing hormone (TRH) from the hypothalamus to the pituitary, thereby lowering the blood level of TSH. But when the patient adds T3 to their daily intake of T4, that direct supply of T3 increases the TRH suppression by four times that of T4 alone.
    A direct supply of T3 also stimulates somatotropin release-inhibiting hormone (SRIH) production, which further inhibits TSH independent of actual T4/3 blood levels. [OK, I don't pretend to completelyi understand the SRIH part, but if an MD has half a brain, he/she should!]

    I hope that helps, at least a bit.
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    Old 03-25-2013, 11:31 AM   #6
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Quote:
    Originally Posted by Alainaaaaa View Post
    New here and new to the world of hypothyroid (unfortunately!). Would love to share my story and have some people in a similar boat to me to talk to.

    My story, in short, is that I have been having all sorts of symptoms for a little while now. Most difficult ones for me are brain fog and fatigue but I've got many more typical hypothyroid symptoms like long cycles, weight gain/can't lose weight, dry skin, sensitivity to cold...

    Not even suspecting anything with my thyroid, I went off the birth control pill about a month and a half ago and about a week and a half after that I was a mess. I woke up one morning with an intense and constant brain fog as well as headaches. I felt like I was in a dream world. I could still go about my day and sort of fake it, but I was far from my usual self. I was also totally exhausted by the end of the day and exhausted even after 8-10 hours of sleep every night.

    Finally, after about a week and a half of that terrible fog, it lifted quite a bit to the point where things are ok now. Not great, but ok.

    During the 10 days of constant brain fog, I saw my doctor and she ordered blood tests. I came back a week later for the results (feeling a bit better at that point, as I mentioned above), and we went over everything and everything was looking ok, until we got to the TSH results.

    TSH was 5.75. I thought I had finally found my answer!!! But wouldn't you know it, my doctor blew me off and told me that her own TSH is in the 5-6 range and that is normal, even though my results was flagged as abnormal. I do live in Canada where 5 or even 5.5 can be considered normal by many doctors, but still, I was outside of that. I knew only a little about hypothyroidism at that point, but I knew enough to ask for free t3 and free t4 testing, which she said no to as it's too expensive and the gov't doesn't want doctors running those tests unless they feel it's necessary, and she did not. I was too confused and unprepared for my results to even be abnormal to argue her, so I left, with her telling me to retest my TSH in 3 months. I should also mention that my cholesterol came out at the high end of normal (don't know the exact number) which I now know is also a sign of hypothyroidism. I am only 31 years old so I don't see why my number would be elevated otherwise. Also, I have been known to have low Vit D in the past (they don't test that for free here in Canada anymore apparently so my doc didn't order it this time), which I have also read is strongly connected to thyroid issues.

    Luckily, I managed to order blood tests myself, so I paid for TSH, free t3, free t4, antibodies and possibly one other test. Got the blood draw Saturday, no results yet.

    So, in short, my TSH came out at 5.75 and my doctor dismissed it as nothing. Top it all off, I had my blood drawn while fasting but at about 2-3pm the first time, which I hear could cause my TSH to be reduced. Luckily, my new blood draw was at 9:30am so I am hopeful it will give me a more accurate number to go back to my doctor with.

    Anyway, I am just really posting to vent and to connect with some other people in similar situations. Thanks so much if you read this far! I appreciate it!

    I didn't read any replies to this yet, so I appologize if this has already been said. You really need a new doctor! I am having issues with doctors and figuring out what's wrong with me, but in saying that all my tests have been within normal ranges.

    I'm not sure how different Ontario is, but I'm in Alberta and if the doctors tried to pull that government crap on me I'd flip my wig!. I had a tsh progressive test ran, which is testing tsh and free t4. If the free t4 comes up abnormal they then test the free t3 from that same tube. It's the same way in Newfoundland (my mom is a lab tech there). Also the tsh range here is 0.5-4.0. The doctor can order any test they see necessary. The fact that she doesn't see this abnormal result as a need to test further is scary. Who gives a rats behind what her tsh is.

    I do know the government is trying to make all labs operate the same (eg all physicians must now sign all requisition forms.). You Definantly need a new doctor, one who thinks your health is worth looking in to. This is scary that with an out of range result, she won't do further testing. Take your new results and go find yourself a doctor who will listen. Why should she care what it costs the government to run these tests? She still gets her paycheck. I would be so mad! My current doctor told me if more people had my weight loss complaint then he would be out of work. He also said he wished he had that complaint. I was so mad with that! I lost 15lbs since Xmas that's a big concern! I could only imagine a doctor telling me I was fine because their tsh was normally high!

    Sorry that made me real mad. She went to school and gets payed real good to HELP people, not dismiss them.

     
    Old 03-25-2013, 04:45 PM   #7
    Alainaaaaa
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Thanks for all the responses!

    Soconfused27 - I so agree that I need a new doctor! I did call around to five or so the day after my doctor dismissed my abnormal result. No one was taking new patients, which is a big, common problem around here. I assume it's the same in Alberta? So I can't seem to get in anywhere. I'm also starting to wonder how to choose another decent doctor who knows anything about hypothyroid. The ones that have good ratings around here are certainly not taking new patients. Even my own doctor has a rating over 4/5 online which makes her sound kind of ok compared to others. I am afraid to move on from her to someone even worse! What about a naturopath? They can prescribe here now I think.

    While on the topic, anyone in the Toronto area know of anyone taking new patients??

    Last edited by Alainaaaaa; 03-25-2013 at 04:49 PM.

     
    Old 03-25-2013, 06:21 PM   #8
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Unfortunantly I can't help with the how to's on choosing a good doctor. I have yet to find one who doesn't blame my symptoms on having a baby or anxiety. I haven't picked a doctor and stayed with them. For my current doctor who seems to be ok, although yet to be decided if he's a keeper, I called the clinic and asked to receptionist to recommend a doctor. They tend to hear the goods and the bads. It's pretty much hit or miss though I think. One thing is certain though, I wouldn't think twice about leaving your current doctor. She isn't even addressing an obvious concern. Worse that could happen is you move on to another doctor who doesn't help. Not much difference really. Then you just continue your search.


    What I have learned is, an awesome doctor for one person may not be awesome for someone else. Oddly I still haven't found a doctor who considers a 15 lb weight loss since December to be a concern. Ot one who thinks losing my hair and eyebrows is not all in my head, when even my husband says he's not sure how I have any on my head still.

    Don't be afraid to shop around for doctors. It's your health at risk. Personally I have seen over 10 since this all started over 6 years ago. Not sure on exact numbers but it could even be over 20 lol.

     
    Old 03-25-2013, 06:47 PM   #9
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    I know it can be really hard to find a new doctor in Ontario. However, you can find a walk in clinic to go to. You don't have to "leave" your doctor. I would try this while looking for a new doctor. I would hazard a guess that the dr. at the clinic would order your tests and or prescribe some hormones for you. Be sure and ask for the Antibodies test.

    I have gone to a walk in clinic when I didn't want to wait days for an appointment with my Dr. There are no set appointments so you may have to wait a while and it is a crap shoot on which Dr. you will get. Can't be worse than your current one.

     
    Old 03-25-2013, 08:17 PM   #10
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Quote:
    Originally Posted by Niviob View Post
    I know it can be really hard to find a new doctor in Ontario. However, you can find a walk in clinic to go to. You don't have to "leave" your doctor. I would try this while looking for a new doctor. I would hazard a guess that the dr. at the clinic would order your tests and or prescribe some hormones for you. Be sure and ask for the Antibodies test.

    I have gone to a walk in clinic when I didn't want to wait days for an appointment with my Dr. There are no set appointments so you may have to wait a while and it is a crap shoot on which Dr. you will get. Can't be worse than your current one.
    Thanks for this tip. I've thought of trying a walk-in before but wasn't sure what they would be willing to do for me. Were you diagnosed with a thyroid problem at a walk-in clinic or did you go in for meds/changes to your situation after being diagnosed?

     
    Old 03-26-2013, 12:36 AM   #11
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Here in the UK the guidelines are also woolly if your TSH is between 5 and 10. It took me years to get my GP to prescribe. I've just been increased to 75mcg and have to be honest that I'm still not feeling much better (last TSH was 3.2 before the increase)

    However, the guidelines do say that a woman who is trying to conceive should be treated with TSH between 5 and 10. You didn't say if you'd come off birth control to try for a baby, but if you have, it may be worth seeing if Canada has also got national guidelines for treatment.

    Edit: I just did a search and found that Canada advises a TSH no higher than 2.5 for someone trying for pregnancy.

    Last edited by mudskipper; 03-26-2013 at 12:40 AM.

     
    Old 03-26-2013, 04:12 AM   #12
    Alainaaaaa
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Quote:
    Originally Posted by mudskipper View Post
    Here in the UK the guidelines are also woolly if your TSH is between 5 and 10. It took me years to get my GP to prescribe. I've just been increased to 75mcg and have to be honest that I'm still not feeling much better (last TSH was 3.2 before the increase)

    However, the guidelines do say that a woman who is trying to conceive should be treated with TSH between 5 and 10. You didn't say if you'd come off birth control to try for a baby, but if you have, it may be worth seeing if Canada has also got national guidelines for treatment.

    Edit: I just did a search and found that Canada advises a TSH no higher than 2.5 for someone trying for pregnancy.
    Not trying to conceive, unfortunately. Also, I doubt my doctor would know that guideline, either. Actually, I'm sure she doesn't since she told me my TSH from an older test from 2010 when I was trying to conceive and I was over 3 back then, too. I don't even want to think about how I'd feel if I were trying to have a baby and I was still being ignored.

    Do you happen to know why the guidelines are so much lower for those trying to have babies then for the general population?

     
    Old 03-26-2013, 08:48 AM   #13
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Quote:
    Originally Posted by Alainaaaaa View Post
    Thanks for this tip. I've thought of trying a walk-in before but wasn't sure what they would be willing to do for me. Were you diagnosed with a thyroid problem at a walk-in clinic or did you go in for meds/changes to your situation after being diagnosed?
    Opps, I seem to have misled you. I haven't had to go to a walk in clinic for my thyroid because my doctor's office changed to a clinic type with lots of drs. If your primary care giver is busy or on holidays you can see one of the others. I was actually started on meds by a different dr than my primary.

    However, before they went to this system I would go to a clinic if she was busy.

     
    Old 03-26-2013, 01:48 PM   #14
    Alainaaaaa
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    Got my blood work results back and while I've just realized that I don't really know how to read anything about TSH, I don't actually think they look bad enough for me to get help too easily... would love to hear others' inputs on the results.

    TSH = 5.04 mIU/L (ref range 0.35 - 5.00 mIU/L)
    Free T3 = 4.8 pmol/L (ref range 3.5 - 6.5 pmol/L)
    Free T4 = 13 pmol/L (ref range 9 - 23 pmol/L)
    Anti-TPO = 5 IU/mL (no ref range)
    Anti-TG = 13 IU/mL (ref range < 40)

    The only one that was flagged as high was the TSH... what are reasonably normal numbers for the others?

     
    Old 03-26-2013, 03:18 PM   #15
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    Re: New Here - TSH 5.75 but Doctor Isn't Convinced of Hypothyroidism

    The problem with lab ranges is that some are outdated, and most are made to target only extreme cases.

    You TSH is till elevated, anything above 3 being out of the more recent range. Along with your high TSH (the pituitary gland's signal to the thyroid) telling that you're body is probably trying to get more thyroid hormone, your FT4 is at the bottom of the range. Some labs have the range starting at 12, so you'd be just short of that.

    Depending on your symptoms, I would definitely try replacement hormones to see if you would indeed feel better with a normal TSH (target being around 1 or 2) and a higher FT4. Now getting your doctor to acknowledge that is a whole other story... Perhaps you could simply tell him that from your own research, you'd be really curious to try medications to see if it makes you feel any better.

     
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