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Re: To Judith- THANK YOU!!!

Re: To Judith- THANK YOU!!!

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Posted by Tina on August 14, 2000 at 15:30:59:

In Reply to: Re: To Tina- THANK YOU!!! posted by Judith on August 14, 2000 at 00:34:32:

: Dear Tina:
: Thank you SO MUCH for your thoughtful and
: well informative feedback. It was so kind of you to take the time
: to give such a detailed answers to my questions.
: Its true about the weight issues. Although I was not thin prior
: prior to having RAI, I was able to lose weight and keep it off
: fairly successfully. I was one of the few who had a weight problem despite being hyperthyroid for 8 years.
: In fact as time went on I started to gain weight with the hyper
: due to being hungry all the time. Yet I was able to take
: the weight off w/physical activity and diet.
: Now its IMPOSSIBLE!!! My MD said that once the thyroid levels
: out, Ill be able to lose weight. Easier said than done.
: He fortunately does not nag about my weight which is good, but weighs me everytime I see
: him, which I HATE. Anyway, he's good when
: I see him, but I have not seen him in 5-6 months. I just get the blood
: work done, and he looks at that.I work in the medical field
: and can get my blood work done in our lab. My endo did mention last time we talked, that I should come in.
: He is SO busy, that I really have to do all of the initiating of the blood work, follow up -phone calls,
: remind him of the last blood test results etc. If I didnt do this, he would have totally forgot about me.
: Its self-serve medical care. I have had the worst luck with endocrinologists. I think I am
: a total low-maintainence patient. Yet either theses MD's dont care,
: or they have been nasty, or have nasty office staff. My current endo is bright
: teaches at Harvard, fairly pleasent, but I have to do all of the work.
: I consider myself fairly well informed, but Im sick of being the one
: who has to coordinate, facilitate, update
: and sometimes educate my physician. I guess Im getting off on
: a tangent, (sorry). Ive had these same endo for the last couple of years,
: and am thinking of trying to find someone who
: combines traditional medicine with wholistic. just for
: a different approach. My endo is the only MD, that I see besides
: my Gyno, which is just one annual visit. (I have Fibroids)
: What does the adrenal test involve? Is that a urine test or blood?
: That's a good suggestion to check this out.
: I'll also take a look at the web site you suggested.
: Did you have Graves prior to your RAI?
: Has the Thyrolar helped your lethargy? Is this
: used in place of Synthroid? where as the Cytomel
: is in addition to Synthroid?
: Thank you again for some very helpful
: and insightful info!!
: Judith

: I have not visited here for some time, but
: : : : : just got a chance to look over this
: : : : : site again. Some great postings, and advice.
: : : : : Anyway, I had RAI in Sept, 1999
: : : : : for Graves disease, and have been on Synthroid since
: : : : : 12/99, gradually increasing the dose
: : : : : to my current RX of 1 pill-(2mcgs per day of
: : : : : synthroid-the brand name).
: : : : : I have had my thyroid profile checked about every 6 wks.
: : : : : The last TSH done 6 weeks ago was 7.0.
: : : : : It was 164 after the RAI! So things have improved on paper
: : : : : but I feel lousy. I am EXHAUSTED,
: : : : : cannot lose weight, in fact I am gaining weight(despite my Nordic tracking
: : : : : 5X per week, and keeping my calories and fat intake down)
: : : : : Ive also been feeling extremely lethargic, border-line depressed and
: : : : : experiencing leg cramps. I have been on Zoloft for panic attacks
: : : : : for the past 8 years(small dose 50mg per day)
: : : : : which has truly eliminated the panic disorder
: : : : : which started when I was dx w/ the Graves. I did
: : : : : read an article about Zoloft and the possibility
: : : : : of it decreasing the effects of Synthroid.
: : : : : ANYWAY, Im wondering about talking to my endo about Cytomel,
: : : : : Thyrolar, etc and anyone here who has
: : : : : possibly had similar symptoms/experiences
: : : : : as I have mentioned. Any advice/feedback would be greatly appreciated.
: : : : : Thanks for your help!
: : : : : Judith

: : : : Hi Judith,

: : : : WOW, your TSH went up to 164 after RAI? How long after? Was it your 6 week check? Mine only went up to 13.4 on my 8 week check and I thought I was dying, can't imagine how you must have felt!
: : : : On your last test, where it was 7.0, is that when they upped you to 200mcg's, if so how long ago was that? If not, how long have you been on the 200 dose? Have you had a Free T3 or Free T4 test? If so what were the numbers?

: : : : I can relate on the weight issues. I weighed 110 lbs prior to RAI in 1-99 but the weight came on at an alarming rate, regardless of what I did or ate. That issue is still not resolved for me but now I feel hopefull.

: : : : I tried adding Cytomel (5mcg a day) to my Snythroid and it did help, it removed my FM type symptoms immediately. But within a week I suffered side affects from it, the worse was stomach acid coming up into my throat while I was sleeping.
: : : : I tried spitting the dose then lowering it to 1/2 of the pill, but then it didn't provide the relief from the FM symptoms (muscle and joint, pain and weakness) so i switched to Armour natural thyroid. That did the trick for me even though it contains more T3 than the Cytomel that I was taking.
: : : : Yet some people get side effects with Armour and not with Cytomel or Thyrolar, so the only thing you can do is try each one and see how it effects you. I feel it's a good idea to start with a very low dose of Cytomel (not more than 5mcgs to start) first to see how it will affect you if it works and you feel an improvement starting then you can up the dose till you have maxiumum benefit.
: : : : If you wanted to then go to Thyrolar so that you only had one pill a day to take. I can provide you with a conversion chart if you decide to switch to Thyrolar or Armour, just ask when you are ready.

: : : : Tina
: : : :
: : : Dear Tina:

: : : Thank you so much for your post.
: : : I pulled out my lab results from
: : : 6/23/00. My blood work was as follows:

: : : Total T3- 68.1 Range 60.0-170.0
: : : Total T4-8.3 Range 5.0-12.0
: : : Free T4-0.8 Range 0.9-2.1
: : : TSH 9.68 Range 0.23-5.40
: : : My Cholesterol has also become
: : : quite elevated, though my HDl and LDL
: : : ratios are quite good. I know the high cholesterol levels
: : : can be a result of hypothyroid.
: : : Ive been on the 200mcg's for the past 2-3 months.
: : : I would say you hit the nail on the head with
: : : explaining the symptoms as that similar to
: : : Fibromylagia, yet I know thats not what I have.
: : : The other thing I have is bags under my eyes or rather dark circles.
: : : Pretty picture, huh? I would really like to try the meds
: : : that are least likely to cause additional side effects. What would
: : : you suggest I ask my MD about trying to start?
: : : My most immediate symptoms are the lethargy
: : : and weight gain. Thank you again for help and advice!!!
: : : Judith

: : Hi Judith,

: : When are you due to go for test's to see the results of the Snythroid dose increase? Might be a good idea to have your Doctor run a adrenal test at the same time as I understand that T3 will not work if there is an adrenal insufficiency. I seem to recall that there is a symptom of hyper-pigmentation associated with it, that may account for the dark circles around your eyes?? I really don't know. I sometimes get dark area's on my eyelids up to my eyebrows so I should ask to have an adrenal tests too.
: : See Cytomel information on dosing, interactions, and side affects. This also deals with the adrenal insufficiency issues(of it not working if there is adrenal insufficiency present)
: : http://www.rxmed.com/monographs/cytomel.html

: : As I understand it Total T4 or T3 indicates both the bound and free hormone available in the blood, only the Free T4 or Free T3 is what is available for use in the tissues and organs. Anyone, please feel free to correct me here as I'm not sure I've stated it correctly. So going by that, your Total T4 may be in "range" but your Free T4 being low would indicate that you do not yet (at the time of that test) have enough T4 to provide it to your cells and other organs where it can be converted to T3. Your Total T3 is "in range" but is in the low end of the range so if your Free T3 had been tested it may come in below range (just like your T4 did). That seems to indicate that you could benefit by trying any of the T3, combo, or natural drugs. Even more so when you have signs of FM and CFS, I would say that it's more proof that you would benefit from it. This is an excerpt from an interview that I thought you might find interesting in relation to it.

: : "In response to Dr. Weetman, David Derry M.D., Ph.D., a thyroid expert and researcher, based in Victoria, British Columbia, responded, saying: "Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions." If you remember it was a long time before the medical profession admitted that there were two new diseases to appear in the world that were not there before. Chronic fatigue and fibromyalgia were non-existent before 1980. This is seven years after the 1973 consensus meeting. So where did these two new diseases come from? The symptoms and signs of chronic fatigue and fibromyalgia were described in the literature in the 1930's as one way that low thyroid could be expressed. Treated early it was easily fixed with thyroid in adequate doses. But even then the clinicians had noticed that if a patient has low thyroid (chronic fatigue and fibromyalgia)
: : for too long then it became more difficult to reverse all signs and symptoms regardless of what they were."

: : Seems that they (the discovery of FM and CFS) also occurred about the same time that the synthetic T4 only drugs were "grandfather" in, although I don't see a mention of it in this interview?

: : I also find this on cholesterol interesting.
: : "David Derry: The thyroidologists have been looking for a reliable test for thyroid function since the beginning of the century. The first important ones were the Basal Metabolic Rate, the cholesterol and the creatine phosphokinase. (CK) . These were used mainly up to about 1960. If you had a high cholesterol in the first half of the century you got thyroid to lower it to normal. Details of using this method of treatment were still described in the 1950's."

: : Read the entire interview with Dr. David Derry, M.D., Phd
: : http://thyroid.about.com/health/thyroid/library/weekly/aa072500a.htm?terms=Dr.+Derry

: : Unfortunately no one is really addressing the weight/thyroid issues, doesn't see anyone wants to encourage the wrath of the humongous diet industries. IMHO. No one seems to want to admit that (with the exception of a few pounds) there is a connection. Yet, so many of us were not only thin but down right skinny before hypo. My Doctor was worried that I was malnourished and was constantly remarking on how thin I was before she sent me for RAI. Within 3 months after RAI she was calling me in the evening to chew me out about the weight gain and cholesterol elevation. Telling me that I would have to watch what I ate!!!! When I mentioned that it was connected to the RAI and thyroid going low, she said that couldn't be the reason. That was the last time I ever saw her, I fired her! I don't allow them to weigh me or discuss the weight or cholesterol now.
: : I make it (each visit) about the Thyroid treatment only. I certainly don't like this extra weight but I know that I can't lose it until the thyroid is under complete control. I also know that ,for me, it would be impossible to lose until I got rid of the FM and CFS symptoms. Now that they are being better controlled it will be possible just because I #1 have more natural energy (much like it was before all this started) #2 have much less pain in my muscles and joint so I'm able to exercise again. I realize that I probably won't be able to lose it as fast as it came on, but at least I have hope now where I didn't before.

: : Wish I could tell you which of the hormones would have the fewest side affects for you but I've seen that it truly is individual. I have read that the natural thyroid is "somewhat better absorbed from the GI tract" so that may be why I do better on Armour.

: : This is an excerpt from an interview with Dr. Brownstein on natural thyroid that you might find interesting.
: : " In my experience, Armour Thyroid provides the best results for the majority of patients. Armour thyroid not only contains T3 and T4, but it contains many other factors that facilitate the conversion of T4 to T3 including calcitonin, T1, T2 and many other chemicals that we have not even identified. If we had a direct human duplicate of all of
: : the chemicals contained and released by our own thyroid gland, I would be the first to promote its use. Armour Thyroid has been around for almost 100 years and has proven to be extremely safe and effective."

: : To see the complete interview http://thyroid.about.com/health/thyroid/library/weekly/aa071700a.htm

: :
: : If you want to get a comparison chart for (to convert from Snythroid to Armour or Thyrolar) you can write to Daryl Wesche, RPh ~ Forest D.I at
: : dwesche@forestpharm.com he will also answer any questions your Doctor may bring up when you ask about switching. He helped me a great deal by answering the objections that my doc had about it.

: : Sorry I've gone on so long here, 2nd time I've done this today. Hope I haven't bored you to death!

: : Let me know how it goes, ok? Sincerely, Tina

Thanks so much for your kind words, they made my day! If it weren't for forums such as this and the many wonderful & helpful people on them, I'd be a hopeless person today. So my goal is to try to pay back those who have help me by passing on, whatever I can, to other while I continue to try to learn more about our condition. I'm certain that if we all do this and share information whenever we can, we will end up influencing the medical community at large to our and our children's benefit. Sounds like I'm on a crusade and I guess I am but I don't want to see this kind of mistreatment (that most of us have undergone) when dealing with the medical world continue. The only way I can see it ever changing is by us reaching out to each other with whatever type of help, support, and passing along any information we can. Ok, I'll get off my soapbox now. ;-)

Oh, just one more thing on that subject…. I recently read a 36 page book that I copied (for free) off the internet and it opened my eyes as to why so many Doctors treat their patients with callousness and disregard. If you ever have time, read it!
http://upalumni.org/medschool/preface.html
When you do, let me know your thoughts on it! You can email me anytime at
smckee1@earthlink.net

Have you tried looking for a good holistic Doc in your area at the Top Doc directory over at about.com? If I ever have to change doc's again I too am leaning towards going to a holistic one. I did go to one 30 years ago when they had office's in the back of Nutrition Store, and ended up with a cart load of vitamins. LOL They've come a long way since then, haven't they!

Just did a search on Adrenal testing, what I found makes me want to have one done NOW! Amazing, I've heard about it for nearly a year but never took the time to investigate it further. Now I could kick myself for not doing it. I only checked out 5 sites so far but going back for some more information as soon as I can. Here's what I found.

On adrenal function:
Under conditions of physiological and psychological stress, cortisol is released in
high amounts. Increased cortisol production is linked to obesity, suppressed thyroid
function, and a host of other serious health consequences. This condition, a precursor to Cushing's syndrome (Fig. 2.), was designated "hyperadaptosis" by Vladimir Dilman, and described in his book, The Neuroendrocrine Theory of Aging.

For more information on Adrenal testing
http://www.vrp.com/Library/asi.htm

Tests you can do at Home
http://store.testuniverse.com/cat/CAT-35

I was never given any dx except hyperT. All I was told was before the RAI uptake was they thought is was Grave's or Hashimoto's, after the RAI the doc just called and said "well, you have a hyperthyroid but then we already knew that, go pick up this prescription and see me in four weeks" I wanted to scream "if you already knew it, why did I have to have another test!" It was a over a year after that I requested copies of all my medical records from her and found that I had test positive for all the antibodies and that I had a hyper functioning nodule. That is another problem with doctors, they always try to get by with giving you as little information as possible, usually justifying it with "you'd never understand it anyway". GRRR

I am not on Throlar since I didn't tolerated the synthetic T3 of Cytomel I figured that I wouldn't be able to tolerate the synthetic T4/T3 Thyrolar either. I'm on Armour, the desiccated pig hormone. Yes it has decreased my fatigue (CFS) and greatly lessened the FM type symptoms. My husband is ecstatic over the improvement and being Scottish he also like the price difference! LOL

Hope to hear from you soon, Tina




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