Each time I've told my doctors I thought my thyroid was "kicking on and off" by itself, they've told me it's not possible. Anyone know?
I've been hypo for 14 years or so. Started on 125 syn, then 150, then 175, then 100 (got real sick then). Back up to 150 syn then gained 12 pounds in one weekend. Belly swelled by 4" overnight----couldn't fit into any clothes. Called to tell miracle endo what was up and he told me he thought he could see me in a month. Got new doctors. Started on 60 Armour---felt better, went to 120 Armour and felt great, then dropped to 90 Armour, then they started me on 90/10 compounded T4/T3. That just about killed me. Got myxedema so bad---they told me I could go back to 120 Armour.
All in all, I think the doctors have nearly killed me three times. Once when I ended up in the ER "babbling" and a b/p of 170/120, once three weeks later when I ended up nearly choking to death on a sandwhich----they didn't feel or see the goiter that was on the inside and outside of my throat.
The last time was my myxedema episode, when they gave me the 90/10 "cocktail" of T3/T4. They told me they'd see me in 6 weeks. When I called and asked for my lab reports, all the sudden they don't want to talk to me.
I have been all over the charts as far as levels go. I'm hoping I can find someone who can figure out what the heck is going on. Can't keep going on like this----it's costing me an average of $5000.00 a year---and with two kids in college and me not able to work, things are getting a little dicey.
Poor Shellshocked! You have had a rough time and believe me I can sympathize! I don't know if I can help, but I will try. What I would like to know is what are your symptoms? And April labs are your most recent? If not post the most recent. Do you have hashis and what about the goiter? BTY, if it is a goiter only, I will tell you the story of my sister which turned out very well.
Anybody tell me if they have had levels like this.
Can you tell me what causes them to vary so much---and why the TSH levels don't correspond to the dose of medication?
Yes please do not just go by the TSH. It is not a reliable guidance. The Ft4 and Ft3 must be checked. Most women feel better when the Frees are in the upper 1/3 of the range. Men feel better when they are a little lower.
Are you on any other medication? Are you menopausal?
This hypo thing can be a pain in the butt. I've been dealing with it for 4yrs and am still trying to find the right thyroid med. I have Hashi's and my thyroid numbers have been all over the place. It would help to post your complete lab results. I have increased my Armour VERY slowly little by little (7.5mgs) per increase to get to 90mgs. I still feel I need something more but I want to go slow so I don't miss my correct dose. I see a new doctor Friday and if I need an increase it is going to be very slowly to get to the next level. I would suggest finding a new doctor that knows how to treat thyroid, I know they are hard to find I'm still looking. You might want to try a Naturopathic doctor. I was seeing one, but didn't feel all the supplements she was giving me was necessary and she also was giving me supplements full of soy and iodine, which is a no-no for us with Hashi's. So I am trying a new doctor who is an Internist, reccommended by the technician that did my thyroid scan.
Being new to this (not the chronic health struggle but the labwork and dx), I don't know much about lab results but I just wanted to say that I'm so sorry that you're having such a terrible time. If you ever need an encouraging word, I'd be happy to email support. Sometimes just knowing that there's someone there who has an inkling of what's going on can be comforting, so let me know if I can help You'll be in my thoughts.
Last edited by moderator2; 06-15-2005 at 11:44 AM.
Reason: please carefully review the posting rules - no emails
I had a hysterectomy about 8 years ago. During those labs---they're the most complete and current, I was on Be-est, progesterone cream, testosterone cream, DHEA and pharmacy grade melatonin.
After looking through my lab reports from all the doctors, I've found that none of them did a comprehensive thyroid panel (I didn't know they existed until I found this board and started to realize tht I wasn't crazy).
One doctor did a few tests here and there over a period of 9 months. I think he did this to "milk" the patient. Things would change each time and he never had anything to compare it to in previous test. He never got a clear picture from the beginning, and then he would drag out things, so I had to keep going back for one test after another at $285 a pop.
I've had just about every symptom you can think of: really dark circles under my eyes, extreme fatigue, muscle weakness, thought I was having a heart attack, out of breath walking across the street, constipation, diarrhea, swollen gut, rapid and unusual weight gain, inside goiters and outside goiters, I'd fall asleep all the time, brain fog, forgetfulness.
When I went hyper, I was full of energy, ate a 1/2 gallon of ice cream, tons of pudding, massive amounts of meat, milk,etc, etc.
I am now self-medicating and feeling much better. I am able to eat small amounts of food---and I mean small. I am measuring everything I eat. I can eat about 3 ounces of protein stuff (meat), then I can have one candy bar and two Quaker Cracker Jack Oat Cakes and I'm slowly losing weight.
I'm supposed to go to a new doctor sometime soon. I accidently found out someone I knew had gone through what I have going through. It ended up she had thyroid cancer and she had her thyroid irradiated. She says she feels great now----she remembers not being able to get out of bed. It was nice to hear someone else who has felt as bad as I have got better. I'm keeping my fingers crossed.
I'll let you know what I find out.