kbutton Posted April 25, 2015 Share Posted April 25, 2015 Please help me make a comprehensive list of what I should have tested and how to pitch it to the doc. I have had my thyroid tested in the past on the advice of people who've said, "that sounds like thyroid." I keep hearing this, over and over again from people who have thyroid issues. I've been hearing it very urgently from at least three people with Hashimoto's thyroiditis. Getting a doctor to listen to anything I say, ever, is usually a joke. I would love some tips for how to pitch this because I'm at, "it's my body, it's my money, it's my blood, and I want to know, @#$%^." :toetap05: I'd like to be more diplomatic. I am seeing a nurse practitioner for unrelated issues on Monday but would like to ask her to draw blood while I am there. She seems to be friendly, but I've found that most docs listen only on the first visit, my allergist excepted from that generalization. I also have the dumb luck of being someone who has to be nearly dead of something before I show even minimally measurable symptoms of said condition, so I am concerned that testing won't turn up anything. If you have a great site or book to recommend that will give a rundown of lab values (broader than what many docs traditionally look at), I would really appreciate it. I found a used copy of the book The Thyroid Diet by Mary J. Shomon at a bag a book sale. I have not read it. Does anyone know if the base information about thyroid problems in this book would be reasonable/correct? Thanks! Quote Link to comment Share on other sites More sharing options...
Susan C. Posted April 25, 2015 Share Posted April 25, 2015 I think the book you have is a good start. stopthethyroidmadness.com is a good site as well. Be ready for the doctor to either say no to the labs, or if you get them, not able to read them right..... But if you are lucky enough to get at least some, it will be a start. Make sure you get a copy. A health food store near me offers labs from time to time for a very reasonable cost, if you can get TSH, FREE T3 and FREE T4 (not total or uptake) that would be a nice start as well. Even if TSH is in range, if it is higher in range (above 1.0 or 2.0) that can be a sign of being hypo. More forward thinking doctors would do a trial of thyroid meds to see if symptoms improve. GL 5 Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 What if my symptoms fluctuate over time or appear singularly and not all at once? I went gluten free about three years ago, and that helped a lot. Quote Link to comment Share on other sites More sharing options...
linguistmama Posted April 25, 2015 Share Posted April 25, 2015 I second that website. I found my doctor by googling for a doctor in my area who was willing to prescribe Naturthroid and Armour. A doctor willing to do that is more likely to help. Mine is just a regular family doctor. It was wonderful for him to look at my lab results, ask how I was doing and validate that I needed some help. Do you fluctuate between hypo and hyper symptoms? That could be a sign of Hashimoto's. 1 Quote Link to comment Share on other sites More sharing options...
happypamama Posted April 25, 2015 Share Posted April 25, 2015 I wouldn't even bother talking to a regular primary care doc. I'd go see an endocrinologist, preferably one with expertise in thyroid if you can. But at the minimum, I'd get TSH and free T4 done, and if the TSH is over 2, even if they tell you it's normal, I'd really push to try some basic meds, if you're having symptoms of being hypo. Levothyroxine is cheap and pretty mild but can make a big difference if your levels are borderline. If your doc won't request the labs for you, you can go to directlabs.com and request them there directly; you pay for them yourself, at a significantly cheaper rate, wait for their docs to prepare the slip in a day or so, print the slip and take it to LabCorp, and within a day or two, you get an email with the results. You can then take the results to your doc or to a different doc. Quote Link to comment Share on other sites More sharing options...
Ellie Posted April 25, 2015 Share Posted April 25, 2015 Do you fluctuate between hypo and hyper symptoms? That could be a sign of Hashimoto's. I am only and always hypo, and have been diagnosed with Hashimoto's. Although I have an endo now who seems to be listening to me, I am frustrated at the 20 years I was undermedicated by my previous PCPs, and with how long it is taking to undo the damage. :cursing: Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 I have some possible "friendly doc" recommendations for someone more specialized than a primary care practitioner. At least two of the four have wildly mixed reviews. I have puttered around about it simply because I find doctors disagreeable, and my symptoms come and go. I have SN kids, and I just don't have a lot of time to be badgered by someone with a med degree. This is doubly sad because my husband works in healthcare! I would have to look at a list of hyper symptoms to see if I fluctuate that wildly. "Normal" everything for me is always a weird baseline, and that includes my body temperature, which will be low for long periods of time and always goes low when I don't feel well. At times, it has made the digital thermometer error out. It occurred to me that it wouldn't require working up extra courage to just ask the NP I am seeing on Monday. She has been nice to me the one time I saw her, so I thought, "hey, I'll ask her if she'll do the bloodwork." Then I would have something to go on before trying out a new doc, potentially weeks from now. I think having the bloodwork done would motivate me to follow up. If it's stone cold normal by any standard, then I will probably just give up, honestly, but at least I won't give up before seeing someone. I suspect that I had post-partum thyroiditis after my first child was born, but I didn't hear about such a thing until after I was starting to feel better. That's when I had my thyroid tested, and it was normal. I have no idea what was tested or the actual lab values. I was treated like I was a hysterical female, even with a doctor that was reputed to be a good listener. They also did bloodwork for rheumatoid because I hurt all over head to toe all of the time and particularly in my joints. That came back normal as well, though it runs rampant in my family. After my first pregnancy, I had PPD, so I think that undermined all my credibility with any doctor if my symptoms were at all able to be dismissed.. I lost my baby weight very, very fast and then got fat pretty fast right after that without any real reason for either extreme. I had not put on a lot of weight during pregnancy. I was not the same at all after I had my first child. I developed severe allergies and asthma. Like, can't walk from my door to the car while anything is growing outside, allergies. Anyway, that was my attempt at testing last time, and I have definitely never had normal biology in my body since giving birth the first time (no complications with the actual pregnancy or birth, other than food poisoning the first trimester). I had more weirdness 2nd pregnancy (more than what I can type out). During my second pregnancy, I ate nonstop but simultaneously lost weight from head to toe while gestating. I honestly lost nearly all the fat stores in my body--my arms, legs, and butt melted off. I've actually wondered if I go hyperthyroid while pregnant and for a short while afterward and then flip (quite fast) to hypo when the hormones wear off. I gave birth to a long, skinny baby who couldn't gain weight for a very long time, lost weight pretty quickly, and then ballooned again. Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 double post Quote Link to comment Share on other sites More sharing options...
HiddenJewel Posted April 25, 2015 Share Posted April 25, 2015 Thyroid autoimmune needs an immune focus and is separate treatment than just low thyroid. This is something that is very missed understood by most practitioners.http://www.stopthethyroidmadness.com/recommended-labwork/http://hypothyroidmom.com/top-5-reasons-doctors-fail-to-diagnose-hypothyroidism/ Quote Link to comment Share on other sites More sharing options...
bakpak Posted April 25, 2015 Share Posted April 25, 2015 Hmmm, wondering if you should get tested for Lyme in addition. It causes the crazy joint pain plus tons of other symptoms that make you think you're crazy, including cyclical pattern of symptoms and low thyroid. The Lyme tests are not the best, so a negative screening doesn't really mean much. I'd try a Lyme Literate Doctor (http://www.lymeresearchalliance.org/find_doctors.html) as they're MUCH more open minded about reading lab results and understanding average is just that. Also check a list of Lyme symptoms and see if you have any other symptoms that match (http://www.lymeresearchalliance.org/signs-symptom-list.html). Everyone's different, and Lyme affects folks in many different ways, but swollen joints, fatigue and headaches are big ones. Yes Lyme can cause just about any symptom you can think of, but oftentimes you KNOW they are related but doctors won't consider how your stiff neck is related to your swollen knees or hypothyroid condition. Quote Link to comment Share on other sites More sharing options...
Soror Posted April 25, 2015 Share Posted April 25, 2015 Stop the thyroid madness has all the details, I've seen that people have mentioned most of the labs but unless I'm missing it(which is possible) I don't see the Hashimotos test mentioned yet- Thyroid Perioxidase Antibodies- anit-TPO and TgAb you need an antibodies test to determine if you have Hashimoto's, the problem is a lot of dr's won't do that unless your other thyroid numbers are out of range. The thing is that hashi's the body is killing off the thyroid (as evidenced by the antibodies) and your numbers do go up and down as this occurs, so one snapshot doesn't tell you much, even then you can be "normal" according to their range but not optimal, not to mention their range isn't really optimal for anybody (as the research shows having higher but still "normal" tsh increases your risk of heart disease by a large amount). Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 Stop the thyroid madness has all the details, I've seen that people have mentioned most of the labs but unless I'm missing it(which is possible) I don't see the Hashimotos test mentioned yet- Thyroid Perioxidase Antibodies- anit-TPO and TgAb you need an antibodies test to determine if you have Hashimoto's, the problem is a lot of dr's won't do that unless your other thyroid numbers are out of range. The thing is that hashi's the body is killing off the thyroid (as evidenced by the antibodies) and your numbers do go up and down as this occurs, so one snapshot doesn't tell you much, even then you can be "normal" according to their range but not optimal, not to mention their range isn't really optimal for anybody (as the research shows having higher but still "normal" tsh increases your risk of heart disease by a large amount). That is one of my concerns. I am afraid they won't do the antibodies tests without some evidence. It's frustrating that ONE sinus infection made a doc want to get a CT of my sinuses (she had jumped to the conclusion that I got them regularly), but something like requires a lot of hoop jumping, esp. if you the doc doesn't have an open mind about numbers. Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 Hmmm, wondering if you should get tested for Lyme in addition. It causes the crazy joint pain plus tons of other symptoms that make you think you're crazy, including cyclical pattern of symptoms and low thyroid. The Lyme tests are not the best, so a negative screening doesn't really mean much. I'd try a Lyme Literate Doctor (http://www.lymeresearchalliance.org/find_doctors.html) as they're MUCH more open minded about reading lab results and understanding average is just that. Also check a list of Lyme symptoms and see if you have any other symptoms that match (http://www.lymeresearchalliance.org/signs-symptom-list.html). Everyone's different, and Lyme affects folks in many different ways, but swollen joints, fatigue and headaches are big ones. Yes Lyme can cause just about any symptom you can think of, but oftentimes you KNOW they are related but doctors won't consider how your stiff neck is related to your swollen knees or hypothyroid condition. I will consider this. I know Lyme is rampant. However, I had (sometimes have) achy joints, but not swollen joints. My headaches are nearly gone after going GF. I know people have been helped by Lyme docs, but I know someone who fell down the rabbit hole of non-productive treatments too, so I am a bit cautious. Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 Hmmm, wondering if you should get tested for Lyme in addition. It causes the crazy joint pain plus tons of other symptoms that make you think you're crazy, including cyclical pattern of symptoms and low thyroid. The Lyme tests are not the best, so a negative screening doesn't really mean much. I'd try a Lyme Literate Doctor (http://www.lymeresearchalliance.org/find_doctors.html) as they're MUCH more open minded about reading lab results and understanding average is just that. Also check a list of Lyme symptoms and see if you have any other symptoms that match (http://www.lymeresearchalliance.org/signs-symptom-list.html). Everyone's different, and Lyme affects folks in many different ways, but swollen joints, fatigue and headaches are big ones. Yes Lyme can cause just about any symptom you can think of, but oftentimes you KNOW they are related but doctors won't consider how your stiff neck is related to your swollen knees or hypothyroid condition. I will consider this. I know Lyme is rampant. However, I had (sometimes have) achy joints, but not swollen joints. My headaches are nearly gone after going GF. I know people have been helped by Lyme docs, but I know someone who fell down the rabbit hole of non-productive treatments too, so I am a bit cautious. Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 My primary will not do any blood tests past the norm unless something comes back out of range, even if I offer to pay (Endos are in the same boat). You can order your own tests online and they will send you the blood draw request and you go to the lab yourself. The bundle tests are cheaper if you have a lot you want done. My state does not allow this but I can easily get over the state line to a lab to get it done. Good luck getting your info. It's very frustrating trying to get answers when you are symptomatic but fall within range. I will start with the NP, and then do this if I need to. Thanks! Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 25, 2015 Author Share Posted April 25, 2015 My primary will not do any blood tests past the norm unless something comes back out of range, even if I offer to pay (Endos are in the same boat). You can order your own tests online and they will send you the blood draw request and you go to the lab yourself. The bundle tests are cheaper if you have a lot you want done. My state does not allow this but I can easily get over the state line to a lab to get it done. Good luck getting your info. It's very frustrating trying to get answers when you are symptomatic but fall within range. I will start with the NP, and then do this if I need to. Thanks! Quote Link to comment Share on other sites More sharing options...
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