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    Old 04-12-2013, 05:32 AM   #1
    Sleepless70
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    Need feedback on thyroid panel results

    Hello,
    I am from a family of seven children. My late mother was diagnosed hypothyroid when she was well into middle age and had been exhibiting the symptoms for years. She also had pernicious anemia, but that may have been diagnosed later. Of her seven children, four have been diagnosed hypothyroid, and three of the four also have pernicious anemia. The remaining three children (including me) have untreated symptoms. Two of my mother's uncles were also hypothyroid, and at least one of them also had pernicious anemia. There are also several cousins with the same problem. I suspect this is just the tip of the iceberg. It is running through my mother's maternal line.

    I am the oldest of these children (about to turn 70) and have been getting my thyroid checked since at least 2000. Here is the record over the past 13 years:

    (2000) TSH = 3.686 (Ref 0.46-3.59)
    (2003) TSH = 4.340 (Ref 0.4-4); Free T4 = 1.10 (no ref. range provided)
    (2005) TSH = 3.600 (Ref 0.340-4.820); Free T4 = 1.40 (no. ref. range provided)
    (2007) TSH = 4.160 (Ref 0.340-4.820); Free T4 = 1.10 (no. ref. range provided)
    (2010) TSH = 4.090 (Ref 0.340-4.820); Free T4 = 1.05 (Ref. 0.54-1.17); Free T3 = 3.2 (Ref. 1.5-4.1)
    (2012) TSH = 4.140; Free T4 = 0.90 (Ref. 0.54-1.17); Free T3 = 2.7 (Ref. 1.5-4.1)

    There is more of a drop in Free T4 and Free T3 than anything. I was never tested for Free T3 until 2010, but Free T4 has dropped from 1.10 to 0.90 in ten years and from 1.05 to 0.90 in two years. Half of this 0.20 dropó0.10--has been between 2010 and 2012, which is exactly when the whole thing first began to affect me. Before that I just got on with my life and ignored the minor symptoms. It was at the 2010 visit that I brought in the first and only list of symptoms checked off, and my doctor blew them off because of the TSH reading. Free T3 dropped 0.50 between 2010 and 2012, but I donít know what it was before those years. It is now just at 46% of the range; free T4 is at 57% of the range. At least it has made it past the middle of the range, but I think both of these results are less than ideal.

    You have probably already guessed that my family doctor is focused entirely on the TSH and won't treat me unless I get to around 5 or even 6. He knows about my family history and my symptoms, but they pale in significance when compared with the almighty TSH. I don't think my TSH is that hot either! It is six months since my last test, and I have decided not to go back to that doctor after being with him for 10 years. I need to get out of that physician group altogether. He's about to retire anyway.

    I have found another MD who has a background in integrative medicine and is a young woman. I am thinking of writing her first and giving her the above information (minus the griping), including my symptoms, and asking if she's willing to look at the big picture instead of focusing only on the TSH. If she cannot do that, then I'll ask her if she knows someone in the area who would be suitable.

    I have a slew of symptoms, and they have been affecting the quality of my life significantly since 2010. The worst is tiredness. This has gotten worse over the past six months. I can fall asleep easily, but then I wake up four or five hours later. In the daytime if I'm not doing something that totally absorbs me, then I'll start to nod off, but I rarely can nap. My hair is getting thinner, and my mind is getting foggier and foggier. I can't live like this any longer. Do you have any comments or suggestions? I just cannot believe how blind some doctors can be! Thanks.

     
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    Old 04-13-2013, 06:50 AM   #2
    Sleepless70
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    Re: Need feedback on thyroid panel results

    Here I am replying to my own post! I didn't get any responses, probably because I wasn't clear in the last paragraph, having written all this between 4 a.m. and 5:30 a.m. What I'd like to know is if those of you with more experience with doctors think I have half a chance of being taken seriously with these readings from my last test in October 2012, or do I need to wait until it gets worse? I sure hope not, because I'm 70 years old and no longer as resilient as I used to be. Thanks.

     
    Old 04-13-2013, 10:11 AM   #3
    midwest1
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    Re: Need feedback on thyroid panel results

    I'm sorry for this delayed response. I've been pondering your dilemma before commenting.

    Your family history of autoimmune disease is considerable. Of course, it puts you at risk of having an AI disorder. That's why you should insist upon having tests for the thyroid antibodies, both TPO and Tg. If either or both is positive, there's your explanation. Negative results don't rule out AI hypoT, however; the tests have a fallibility rate of up to 20%. They're still worth doing.

    The first MD I took my symptoms and concerns to 10 years ago also ignored my TSH of nearly 5. Like yours, he doesn't treat until it reaches at least 6. So I proceeded to an endo who readily agreed I was hypothyroid, but whose preferred treatment failed me. I then proceeded to a holistic MD who provided optimal treatment, which is still working well for me.

    Your TSH has been higher than 1 - the average for most healthy people - for years now. The problem is that your FTs haven't been obviously deficient. Even now, they are considered mid-range, which are optimal for many women in your age group. More significant than the current levels might be their steady falling pattern. If you're one of those people who feels minor levels changes in a big way, that could explain much. I won't go so far as to say your thyroid is healthy, because the TSH isn't saying that. But even if you find an MD who relies more on the free Ts, they look too darn "normal" to say they're definitely deficient... So you still might not get a diagnosis.

    Your plan to ditch your current doctor and to investigate the integrative one is a sound one. The right MD is half the battle. If the integrative one doesn't work out and she can't recommend someone else, you can try asking area pharmacists for names of MDs who prescribe Armour thyroid. Those MDs are usually more thyroid-savvy than the majority who won't prescribe Armour.

    Not to sound ageist... [I'm 63 myself] ... but I'm sad to say that you might have a harder time finding treatment because of your age. Many MDs are frightened of us because starting thyroid treatment can be hard on older hearts, and they don't want to take the risk. Not that it's impossible to find treatment, but it will likely be harder. Just so you know.

    I'd be very surprised if your thyroid is functioning completely normally. Don't give up your pursuit of health, no matter if it's related to low thyroid or it turns out to be something else.

    I hope you won't hold the slow response against us and that you'll let us know what happens next. Good luck to you!
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    Old 04-13-2013, 12:33 PM   #4
    Sleepless70
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    Re: Need feedback on thyroid panel results

    Midwest, I am SO GLAD to hear from you! I was waiting for someone to respond before I did anything about that doctor. I think I will check with several pharmacies first, but won't rule her out just because she isn't listed. I live along the Idaho/Washington state line, near two college towns, but I'm about 75 miles from both Coeur d'Alene and Spokane. It takes about an hour and 45 minutes to get to either place from my home because of the country roads. That's where the "top doctors" are for my area (but not necessarily because there aren't any around here). That list is getting fearfully out-of-date, BTW, and one of the recommendations turned out to have an ethics violation (over-charging a patient).

    I especially appreciate your comments on the Free T4 and T3 values because I wasn't sure what to make of them other than they had dropped over the 13-year span. So I will focus more on the TSH being so far from 1 (my husband's is around 1.7; he is 74) and on the family history and my symptoms. I realize the symptoms can be attributed to other things, including my age and some other disease.

    I didn't know that my age would scare the doctors off because the treatment would be hard on older hearts. That's an extremely valuable piece of information you've just given me, Midwest! I looked at my first post and see that I didn't mention my lipid panel results, which I was planning to put in that letter to the doctor, just for her information. That area has consistently been one of my strong points all my life. Back in 2000, my cholesterol was 191 and my HDL was 71. Thirteen years later it is 194 (normal is considered below 200), and my HDL is 77 mg/dL. Below 40 is considered bad. The other measurements are all excellent, and Cardiac Risk is 2.5 (Ref 0.0-4.4), which isn't too shabby for a 70-year-old! I think my cardiovascular system is probably the youngest part of my body. I'm not on medication for anything. Blood pressure is okay too. I will need to concisely emphasize the lipid panel results in that letter. Maybe that will help.

    I also forgot to mention in the first post that my B12 test in 2003 showed me with B12 in the 1300s. Ref range is 243-894, so I didn't get it tested again until 2007, when it was down in the 900s, so it looks like I have escaped that portion of my family inheritance. My brother (2 years younger) also doesn't have it. His hypothyroidism is milder than that of the others diagnosed and treated in the family, but he was able to get it treated without a problem in Calgary, Alberta.

    Your mention of the antibodies is another thing I hoped someone would mention. I wasn't sure what to ask for in that area. I will highlight those two and point to the high degree of AI disorders in my family.

    So now I feel I am ready to write that letter, but will contact pharmacies on the Washington state side, where she is located. She is part of a group practice, and several pharmacies are on the same street, so I'll target those. I don't want to contact any on the Idaho side because my current family doctor is in the largest group practice in that town, and even if there's anyone in his group who prescribes Armour, they'll drop me like a hot potato when they find out who my doctor is. He's one of the senior MDs in the group, and nobody there is going to risk going over his head for me.

    I will be back later. I hope it'll be good news. My physical exam doesn't show anything else wrong with me, so hopefully someone will treat me. Even a tiny little bit of the hormone might be all I need.

    Thanks again for your valuable help. I really appreciate it!

    [QUOTE=midwest1;5161347]I'm sorry for this delayed response. I've been pondering your dilemma before commenting.

     
    Old 04-13-2013, 11:07 PM   #5
    midwest1
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    Re: Need feedback on thyroid panel results

    I'm happy to help.

    Sounds as if your heart should be in great shape should you find an MD who'll give you at least a trial of thyroid hormone. Interesting that you should mention your optimal cholesterol levels. Hypothyroidism is the second leading cause of elevated LDL. The two are so closely linked that at one time, before development of the TSH test, it was routine to use a cholesterol measurement as a diagnostic tool for hypoT. So, pointing out your great levels may backfire on you. I wouldn't press that issue, unless the doctor tries to say you can't be hypothyroid because your cholesterol is good. If that happens, you could counter by saying it might be even better if thyroid function was optimal!

    I find the current top doc list to be in terrible need of updating, too. It's not as useful as it once was. And the politics at play in those mega-mart medical practices can be daunting.

    Best of luck. Hope you'll keep us filled in.
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    Old 04-14-2013, 09:22 AM   #6
    Sleepless70
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    Re: Need feedback on thyroid panel results

    Midwest, once again, you have helped me so much! I have a draft letter available, but that's all. I won't emphasize the good lipid panel--maybe just mention the cardiac risk level in passing?

    I have a few theories based on my knowledge of family history. My mother's mother married her second cousin. They both shared the same family line that is passing on the thyroid issues, so my mother got a double wallop of everything. That particular line is also noted for it's longevity. My mother was almost ninety when she died, and my two uncles mentioned earlier made it past 90. My grandmother was 99 when she died, and her sister was about 101 years old when she finally passed away. Heart disease wasn't an issue in that line, so I think I have inherited some good along with the bad, and that may be the reason why I appear to have conflicting results.

    Also we are looking at descendants of pioneer Scottish emigrants to Cape Breton Island during the Clearances of the late 1700s and early 1800s. These people intermarried at an awesome rate after they came to Cape Breton, and this continued until after World War II. (I was born and raised there and am now the family genealogist.) I'm going to try to concisely point out my strong heart, while at the same time giving a possible reason why I have bucked the trend for LDL. Does that sound like a good move, or should I just remain silent on the matter?

    I agree with you that those big practices are very political. I have been picking that up along the way. The second doctor that the pharmacy quoted as prescribing Armour is on the Idaho side and one street over from where I've been going. He specifically lists hormonal therapy as one of his special interests. The other doctor doesn't mention it in his list of interests. He also goes across the state line and sees patients at the other place I've been planning to go to. I am now wondering if I should try him first? One thing that holds me back is that Medicare isn't mentioned in his insurance listing. He is in a very small practice with two other doctors, as far as I can see, and is in his late 50s. Some doctors are refusing to see new Medicare patients, but I guess it won't hurt to try. He might even find me an intriguing patient.

    I hope you can get back to me before noon Monday (Pacific time), as I plan to mail the letter around 1 p.m. If I don't hear from you by then, I'll wait until Tuesday.

    Many, many thanks for your help!

    QUOTE=midwest1;5161537]I'm happy to help.

    /QUOTE]

     
    Old 04-14-2013, 06:01 PM   #7
    Sleepless70
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    Re: Need feedback on thyroid panel results

    I have decided to stop pussyfooting around and send the letter to the doctor I decided on earlier. I believe he knows the other doctor, so if he doesn't want to deal with me, he can just refer me to the other fellow. I will make sure that the doctor knows that my good heart was inherited from the same line that passed down the thyroid problems, and they have coexisted together for a long, long time. Thanks again for all your help, Midwest. I'll be back after I hear from the doctor.

    Last edited by Sleepless70; 04-14-2013 at 06:02 PM.

     
    Old 04-15-2013, 09:15 AM   #8
    midwest1
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    Re: Need feedback on thyroid panel results

    Sorry I couldn't get back in time to comment on your decision, but I'm not sure I'd be much help in that department. I'm generally a decision-challenged soul. If it weren't for my DH serving as my sounding board, I'd never get anything settled. LOL

    Most MDs like to think treatment of hypoT is science, but it really is more of a subjective art. For now, until our health system undergoes the radical changes ahead, it's usually possible to doctor shop until one finds a cooperative, more thyroid-savvy one who will agree to not just look at the lab report and stop there. I'm not sure how much longer such shopping will be possible, though... what with the Medicare shortage of MDs and constantly-changing private insurers. I was recently switched to a different company's plan in which my thyroid doc is a member, so I had to pay the entire charge for my annual check out-of-pocket. What's more, the lab that ran the tests seems to be in "gouge" mode now. The fees charged for these tests was more than doubled since last year. Greed has it's eye on the 2014 horizon.

    Glad to meet another genealogist... Although you seem much more accomplished at it than I!

    Do let us know how it goes with the doctor.
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    Old 04-15-2013, 10:27 AM   #9
    Sleepless70
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    Re: Need feedback on thyroid panel results

    Thanks again, Midwest. I'm about to put the letter to the Washington-side MD into an envelope and be done with it. The reason I decided to do something about all this is because of the changes looming in 2014. They are giving me the jitters. In addition to Medicare, I've a great supplementary plan, but my other separate long-term disability insurance doubled this January. I expect it to do so again in 2014.

    Good to meet another genealogist too. That's what I work on if I wake up too early. It makes the rest of the night fly by.

    I'll be back later with either good or bad news.

     
    Old 11-22-2014, 10:26 PM   #10
    Sleepless70
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    Re: Need feedback on thyroid panel results

    Well, here I am a year and a half later! Nothing came of that letter to the doctor. This year I started keeping an eye out for new doctors coming into my current family practice group. It wasn't until late this summer that I saw one I thought would work for me. She's a woman and young. So last week I got an appointment with her. I actually didn't need to raise the thyroid problem with her. She did that herself while reading my chart and asking questions. All was good until she did a double-take and peered at the screen more closely. She looked taken aback, so I asked her if it was my thyroid results she was looking at. She nodded her head. I mentioned that I could do with some help in that area and she agreed and rolled her eyes. She wanted to hear what my symptoms were, and after hearing about them, she ordered an immediate blood test then and there, and the rest is history! I started on 50 mcg of levothyroxine a week later and have been on it four days now. I'll be going back to see her on January 5th for another blood test and probably more tweaking. You have no idea what a relief it is to get away from my previous doctor and be with one who actually looks at the big picture and not just the numbers. Thanks for letting me rant in my earlier messages, Midwest. Happy Thanksgiving!

     
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