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Thyroid Disorders Community
This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, pituitary gland, cancers, thyroiditis, and thyroid Stimulating Hormone (TSH).
Trying to get proper treatment and testing profiles...
by catzbarking, Jul 12, 2008 04:19PM
Dear Doctor:
As a thyroid patient, most of the PA's, NP's, DO's and MD's I have seen will only order TSH. - I am tired of hearing how "sensitive" this test is in helping a Hashi's patient feel well, and know that it is not working for me in the 12 years I had my first diagnosis.. Since "feeling well" seems only subjective to the medical community, it is my experience that I was given psychotropic drugs and pushed through various indigent care programs, as I am uninsured. My previous endo and others before her never told me I had Hashi's. They didn't seem too concerned about my symptoms at all.
I digress...
My last test was done in June.
With a TSH of 119.120 reference interval: 0.350-5.500
TPO: 3489; r.i/ 0-34 (they did this result twice to verify it)
Antithyroglobulin Ab count was 2974; r.i./ 0-40.
At the time these tests were completed, I had been off of thyroid meds for over two months (levothyroxine 175 - 200 mcg), after taking this T4 only hormone for over 11 years; I did not know who to see for help and was caring for my mother and simply ran out of T4. I had suspected that my symptoms were becoming more problamatic and the T4 only treatment was not a complete mangement of my thyroid problems.
I had (still have) cramps in my legs all the time with my tendons always in pain, my bones hurt and my muscles weak. I am not just fatiqued but exhausted. Ozone is the worst along with the hot weather we're having in Colorado. I am taking Selenium, Vitamins C and B Complex plus Folic Acid and CoQ-10 and magnesium and my smaller dose multi has manganese. Again this was done with my own knowledge of nutrition as a professional chef and with the help of reference books and studies.
I found a PA-C who agreed to put me on Armour, but she doesn't seem to know how to dose, and tried to talk me out of Armour. While I know I am not more knowledgable than a doctor, I also know that there is something to what I have read and researched and particularly to what I am experiencing first hand. Even though I was only prescribed a 0.25 gr plus a 0.5 gr; after 2 weeks I began having the fullness in my throat and was holding water along with more brain fog, lumbering movements and greater fatigue, among other things. I have increased my dose to 1 grain at about 11 am, and have been feeling a bit more able to do some daily routine things and my concentration seems to be getting better, I will probably need to dose a bit higher; 1/2 grain more, in another week or two.
I still feel exhaustion and like my legs are weighted by lead the day after I do any physical activity or work, including pain, far from "feeling well". I'll be taking my tests again though the PA-C wants me to get TSH only, RA and glucose.
All this is happening while I am caring for my 80 year mother who has recently had two surgeries and is diabetic with hypothyroid herself!
I wonder how I can find a doctor in Colorado who can treat me by how I am feeling and a complete testing proflie, not just this TSH test only baloney...?
Can you refer someone, offer suggestions - please, I need help.
As a thyroid patient, most of the PA's, NP's, DO's and MD's I have seen will only order TSH. - I am tired of hearing how "sensitive" this test is in helping a Hashi's patient feel well, and know that it is not working for me in the 12 years I had my first diagnosis.. Since "feeling well" seems only subjective to the medical community, it is my experience that I was given psychotropic drugs and pushed through various indigent care programs, as I am uninsured. My previous endo and others before her never told me I had Hashi's. They didn't seem too concerned about my symptoms at all.
I digress...
My last test was done in June.
With a TSH of 119.120 reference interval: 0.350-5.500
TPO: 3489; r.i/ 0-34 (they did this result twice to verify it)
Antithyroglobulin Ab count was 2974; r.i./ 0-40.
At the time these tests were completed, I had been off of thyroid meds for over two months (levothyroxine 175 - 200 mcg), after taking this T4 only hormone for over 11 years; I did not know who to see for help and was caring for my mother and simply ran out of T4. I had suspected that my symptoms were becoming more problamatic and the T4 only treatment was not a complete mangement of my thyroid problems.
I had (still have) cramps in my legs all the time with my tendons always in pain, my bones hurt and my muscles weak. I am not just fatiqued but exhausted. Ozone is the worst along with the hot weather we're having in Colorado. I am taking Selenium, Vitamins C and B Complex plus Folic Acid and CoQ-10 and magnesium and my smaller dose multi has manganese. Again this was done with my own knowledge of nutrition as a professional chef and with the help of reference books and studies.
I found a PA-C who agreed to put me on Armour, but she doesn't seem to know how to dose, and tried to talk me out of Armour. While I know I am not more knowledgable than a doctor, I also know that there is something to what I have read and researched and particularly to what I am experiencing first hand. Even though I was only prescribed a 0.25 gr plus a 0.5 gr; after 2 weeks I began having the fullness in my throat and was holding water along with more brain fog, lumbering movements and greater fatigue, among other things. I have increased my dose to 1 grain at about 11 am, and have been feeling a bit more able to do some daily routine things and my concentration seems to be getting better, I will probably need to dose a bit higher; 1/2 grain more, in another week or two.
I still feel exhaustion and like my legs are weighted by lead the day after I do any physical activity or work, including pain, far from "feeling well". I'll be taking my tests again though the PA-C wants me to get TSH only, RA and glucose.
All this is happening while I am caring for my 80 year mother who has recently had two surgeries and is diabetic with hypothyroid herself!
I wonder how I can find a doctor in Colorado who can treat me by how I am feeling and a complete testing proflie, not just this TSH test only baloney...?
Can you refer someone, offer suggestions - please, I need help.
Post Comment
I have to wonder though, why you felt the T4 med was lacking. Generic Levothyroxine is the worst, which could be a source of your problems. It's also possible you have been held "within range" and hypo for years on end.
Unless you keep your TSH in a very tight range all the time, you will suffer. The average TSH is between 0.8 and 1.8, and that's where it needs to be. 3.5 is not fine and will make you ill. Not all doctors realize this. They should, but they don't.
With Armour, you will sure need more than a TSH test. You will need Free T4 and Free T3 tests, because the correct med dose may not produce a very normal looking TSH.
There is a thread in the health pages that lists a website that lists doctors in your area. It is not a complete list, but it may help you.
The button for the health pages is toward the top of the page on the right.
Best of luck to you, and welcome to the forum.