Hi all-
I found your thread of messages a few weeks ago and decided to make an appt with Dr. Holtorf as soon as I could because I was quickly becoming discouraged by the response of multiple doctors I had been going to. When I went to see my internist for my annual exam, she discovered a golf ball size csyt on my ovary. I then told her that in the last 3-6 months I had been experiencing memory loss or poor recall, irregular periods, numbness in my arms and legs that would wake me up from sleep, and that I had gained about 15lbs in less than 2 months even though I have been working out more now than ever before in my life, watching what ate and even drinking more water....she said "these things sometimes happen and we don't know why." Annual blood tests showed "normal" tsh. Went to go get a second opinion and had to pressure that doctor to do some kind of further testing of any kind to see what else it might be since we had ruled out thyroid. So I had an MRI, and Echo and some other stuff. They found mitral valve prolapses with regurgitation...and after a few other tests found out that it wasn't serious...HOWEVER...back to the original syptoms, the MVP had nothing to do with it. So, I still had this hunch it was something thyroid related and although everyone I talked to (chiropracter, acupunturist and 2 internist) told me that it couldn't be thyroid...I still followed my hunch and made the appt with Dr. Holtorf. I had my visit on 09-08-04 and cannot wait to see if the blood tests reveal that I am not crazy. Girly girl, I am SO anxious to see how you are feeling now and what changes you have noticed. Specifically I have the most strange and uncomfortable bloating/weight gain in my waist area and even upper belly...which is so strange for me. It's making me depressed as I have grown out of pretty much all of my clothes in less that 3 months. I pray that you are doing well and noticing wonderful and encouraging changes since your visit with Dr. Holtof. Please keep me posted!!

Hi Sharig,

I'm so sorry to hear about your frustrations with your health. I have been seeing Dr. Holtorf a few times a year and am very happy to report I'd doing very well. I love my compound thyroid meds and admitably, am no longer perfect with my diet. I am good during the week, and then allow myself wine and dessert with dinner on the weekends. I have been eating some bread on the weekends too, in small amounts. Like today I had a half of turkey sandwich on a whole grain bread with a bowl of veggie soup and some tea. Before Holtorf, this would have caused me extreme bloating to the point of discomfort and needing to unbutton my pants and take off my shoes. Today, there was zero affect.

I had my annual with my Dr. at UCLA last month. He couldn't believe that I had lost 20lbs and my bodyfat is 17%. It was at 47% when I saw him initially before meeting Holtorf. They also did an exam, for my body age, based on my cholesteral, heart beat, treadmill, bodyfat, blood pressure, estrogen, etc... I'm chronologicallly 36 but my body is 26.

I will say a prayer for you. Also, the diet I follow primarily is "LA Shape Diet" written by David Heber, my doctor at UCLA.

Best wishes, and thanks for sharing your story. Please keep me posted and let me know if I can help you in any way. Girly girl nxt dr at yahoo dot com

Shariq,

I'm excited to hear that you have seen Dr. H - You will be amazed at the help he will be able to give you! By the time I had seen Dr H, I had practically given up. I KNEW I had a problem with my thyroid, because of my family history and my symptoms. I couldn't find a doctor who saw it. When multiple doctors had told me that my BLOOD TESTS told me that I was "normal", I started to question myself. I mean, a blood test is a quantifiable assessment of data - right? Dr H was my last hope, and I went to see him with the prompting of my husband. It was incredible, having a doctor not only listen to my complaints, but in some way, validate them. He was able to see the entire picture - not dismiss each complaint individually!! For instance, the doctor before Dr H told me that I was losing my hair because I wore it in a ponytail too often, that I was gaining weight because I was on the pill, and that I was cold and sluggish because I was depressed!! None of which were correct, obviously. Dr. H was able to take them all together.

Ultimately, I'm very excited for you because I know you are about to have your symptoms and complaints in some way validated. Dr H will listen and offer constructive suggestions to make you feel better. And that he did. I have put on the weight that I initially lost, but I am admittedly not eating all THAT well. [I know that if I had the time to go back to WW full time, I'd see results.] I am not losing my hair, I am not always cold or sluggish, I don't get a cold at the drop of a pin, and I'm happy. The winter I started meds was the FIRST winter that I didn't get a cold that lasted for weeks and took me out of work!

I have more information on my story and Dr H at my site. If you are interested in checking any of that out go to http://diagnosis.4t.com. In the meantime, chin up! And keep us posted on your results - I'm on pins & needles!!

Margie

Margie, that's really interesting what you say about catching colds. In the last year I've had flu, two major chest infections, about three colds and viral meningitis. And its the last year I've had hypo symptoms. In fact, it was me keep catching things, when normally I'm really fit and healthy that started me on the track of hassling the docs to test me for hypo.
Glad you've found a doc that's sorting things out for you - that's my next step.
Take care, Jay

Hi Jay,

Regarding the colds and flu's. I was a vegetarian for four years. All four of those years I had a cold. Once I began eating meet again, my colds went away. I'm wondering if you have too much mucos (diary products and soy can cause this) or if you are not eating enough protein.

It's hard to imagine, since you are a low carb person. However, it could be a factor. I know when get a cold, I double up on my soups, and protein and it goes away faster.

I wish you luck in finding the right doctor. If you go to the aboutthyroid.com site there is a listing of good endrocrinologists that other tyroid patients have recommended all over the country.

Warmly,

Athena

Jay,

I was a vegetarian for . . . 10 years? 1993 til 2000 religiously, 2000 - 2003 on and off. Anyways, I had no problem with colds whatsoever until 1997, around the same time I noticed weight gain and hair loss. For me, I don't think my diet impacted my sensitivity to colds as much as my undiagnosed hypothyroidism.

Starting at around that time, every winter I carried a big box of tissues with my to class. My nose was always red. I felt miserable. Every August, I worried about my impending colds. I was never like that before. And my husband used to flip out when we would go on vacation and I would inevitably get sick. He would tell me - it's all in your mind! Get over it! Every holiday or vacation you get sick - stop it!! And it was true; every time I rode in a plane I was guaranteed to catch someone else's cold with all the recirculated air. 100%.

I didn't even think that was a symptom of hypothyroidism - I just thought that was me. When I started thyroid meds, I didn't expect to lose that sensitivity to getting colds. When New Years rolled around that year and I realized that I hadn't gotten a winter-time cold AND I didn't get sick after either of my holiday trips - I was floored. It was the first time. And since I started my meds? I've only gotten a winter cold once - and it was because it was going around. It lasted just as long as everyone else's did - not the entire winter!

Like Girly said, Mary Shomon's site has a wonderful listing of doctors that are recommended by patients in their area. It is the Top Doc Directory at www.thyroid.about.com. It is fabulous, because it isn't just doctors who advertise as specialists or good or anything - it is doctors who have earned that reputation by their patients. And they are only there because they were recommended by a patient. I highly recommend you check that out!!

If you are going to see a doc, I would recommend that you bring some information with you. You should have a general familiarity with the symptoms of hypothyroidism, and you should go equipped with a journal of your morning body temperature. Also, a journal of your heart rate would help. For more information on that [and for an explanation as to why these would be helpful] you can check out the "What To Do Now" section on my site.

Margie

Hi Athena and Margie, thanks for all the support. I don't think its lack of protein, as you say, we low-carbers eat a lot of it. My hubby is very sensitive to dairy, he gets sinus infections if he eats a lot of it. I'm not too bad, I really think the awful year I've had it related to hypothyroid.
My doc doesn't understand about the basal temperature test, I took my temps in last time and she said 'not to worry they're low, our metabolism slows down at night' Yes I know that, but not down to 96.6.
Still, at least she did the T3 and T4 tests, which showed up low T3. Maybe I can talk her into Armour. If not, I'm going to ask for a referral to an endo, apparently there's a good one not too far from here.
Thanks for the support, hope everyone else is winning too!
Take care, Jay

Jay,

FYI - many doctors out there believe low body temperature is enough of a symptom to diagnose hypothyroidism. In fact, my doctor [Dr. H!] believes that it is the single best thing to look at to determine hypothyroidism. That is because there is thyroid present in every single cell of your body - therefore, there can't truly be one single test to determine how your body absorbs the hormone. Although a multitude of tests can give you an idea - sometimes the body's temperature alone is the best gauge.

See:

Dr. Broda Barnes
Hypo-Thyroidism: The Unsuspected Illness
pg: 42-48

"The body thermostat of a thyroid-deficient person may call for more heat, but thyroid hormone is essential for the oxidation or burning of fuel in the body, and in the thyroid-deficient person body temperature falls below normal because of inadequate oxidation" pg. 42

" I could report in 'The Journal of the American Medical Association' on a study with one thousand college students whose basal temperatures were taken and who also received basal metabolism tests. The study indicated that a subnormal body temperature is a better index of hypothyroidism and the need for thyroid treatment than the basal metabolic rate." pg. 43

"Thus, it seemed that axillary, or underarm, terperature might serve as a simple guid to determining low thyroid function and the need for thyroid therapy . . .A temperature below 97.8 indicates hypothyroidism" pg. 46

"When no other reason can be found, no clear-cut diagnosis made, to explain the presence of symptoms or a whole complex of symptoms, it is worthwile taking a thermometer to bed with you . . . A reading below the normal range of 97.8 to 98.2 strongly suggests low thyroid function." pg. 48

Or, see:

Dr. Wilson
http://www.wilsonssyndrome.com/Iden...TheProblems.htm

"Under periods of stress (such as childbirth, divorce, or death of a loved one) the metabolism can slow down as a coping mechanism. That's a normal response the body uses to conserve energy. After the stress has passed, the metabolism is supposed to return to normal but sometimes it doesn't. The metabolism can remain persistently slow, as demonstrated by a low body temperature, even though the stress has passed. This condition is known as Wilson's Thyroid Syndrome (WTS) because it causes low-thyroid-like symptoms and because it often responds characteristically well to a special thyroid medicine treatment, even though thyroid blood tests are often normal (You can use the links at the top left of this page to find out more about WTS). When the metabolism slows down it can adversely affect all other bodily functions . . ."

Another doctor well known for his position on low body temperatures and their significance for hypothyroidism is Dr. Lowe. Although I can't find a ready quote for you from his site [I will be looking!] his site can be accessed at www.drlowe.com

Armed with this information, perhaps you can get more response from your doctors when you point to your extremely low body temperature!!

Margie

That's brilliant Margie, thanks!.My doc is going to get so much to read tomorrow! We'll see what she says. I have a horrible feeling it will be 'carry on with the thyroxine' but maybe I'm wrong and she's really enlightened. Fingers crossed, Jay

Margie and Athena-
Quick question for you...of all the 28 blood tests he ordered, he didn't check off:

anti-tsh antibody
anti-t3 antibody
anti-t4 antibody
Thyroid stim immunoglob

I thought those were important to check too?
Shereen

Hmmmm.... Wilsons syndrome, eh?! Thats sounds very possible... I have had alot of stressfull periods, I still do. Ill take that up with my doc tomorrow. Thanks alot Margie!

Da Rosa - Let us know how the doctor's visit went!

Shariq - I'm not an expert on tests, but I know what Dr. H has shared with me and what I've gleaned through books. The tests that you've mentioned? I'm not familiar with them. Now, the plain old TSH test, T3/Free T3 Tests, T4/Free T4 tests, are something different than what you've mentioned. Those tests are helpful.

If Dr. H ordered some tests over others, then I suspect he has a feeling for what is wrong with you already and is just looking for tests to confirm it. And, since I've never heard of those test, there is a possibility that they are out of date tests.

SO - how did the visit with him go?????

Margie-
The tests I mentioned were on the lab request sheet, but they weren't checked. I had just heard about those anitbody tests from other websites, and I was just concerned because he didn't order them. I just had my TSH tested in July and he saw the results...and they were 1.77(normal) so, I wasn't sure why he had them re-ordered. But, you know what. If he finds something he can treat, I don't care what he orders! :-) The visit was fast an furious. He was nice, but also matter of fact and pretty speedy. He explained things very fast and just slightly over my head. I guess I was expecting someone to kind of do a "there there...you aren't crazy I understand how hard this has been for you, good job for being so persistent blah blah blah." But I can get over it if he can help me to feel better. I'm sure he spends all day seeing patients just like me, but I've been jumping doctor to doctor looking for someone to show some compassion as well as believe in me, and he was doctor number 5. Please dont get me wrong, I feel super lucky to have been led to him, and like I said, if he can help me feel better, it's all good!
The hard part is going to be waiting another 2 weeks for the lab work to come back. I have a question though, you may not have had this symptom, but I am soooooo bloated in my whole midsection and have gained 19lbs since May. My stomach is just squishy and weird feeling. Do you have any idea if this will go away and if so how long will it take?
Thanks again for all your help and your listening ear. Right now I am just feeling so strange. Very irritated for NO REASON, tired (today I went to Pilates and I just wanted to take a nap about half way through and my back was aching, which it never ever hurt before in class), bloated and just mad at myself for feeling like I'm complaining about nothing and I should be more of a grateful person. Ay ya yai....anyway...again, thank you for your ear, I am thankful to have found everyone on this site because it is very encouraging to speak to people who have some idea of what I am talking about.
I will keep you posted on the results (beginning of Oct)
Love!
Shereen

Does anyone know what this med might be called, or for that matter how anyone's experience with it has gone?

Hi all!
Just wanted to send an update. Although Margie has already heard this news before ;-)
I got my labs faxed to me for my appt with Dr. Holtorf and I was freaking out thinking I was some sort of head case because everything was within the normal ranges!! When I talked to him though he said he thought my free testosterone was too low (<.5 showing too low to calculate) and my cortisol total serum was too low (4.3 and I think he said he would like it to be between 8-16). My TSH was 2.296 (and he said he would like to see if we can get it under 1.0) and that my free T3 was 4.55 just slightly high which made him think that I was thyroid resistance. At any rate, I got all my pills on Thursday of last week and it's been 3 days since I've been taking them (thyroid, Iron, Cortisol, testosterone, inostitol and buluoke (don't ask me what the last two are for because I haven't the slightest). So far I don't feel any changes, but I have my eyes wide open to notice any and all changes that are coming my way!
:-)
Shereen