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Erratic Thyroid Results
I have been experiencing erratic thyroid results which have baffled the doctors and the endocrinologist I've been seeing. I was diagnoised at 17, and I am now 33 - and the last 6 years at least I have had TSH levels swing from under to over. I'm not sure they have ever been stabilized for any real length of time. The latest TSH results (and I get tested every six weeks) on the same dosage were, 26.1, 36.0, 19.2 and then to 50.9. Then I was advised to increase the dosage by 25mg which resulted in a 0.37 TSH level!!??! I keep my tablets in the fridge, I take them first thing in the morning with no interference of other medication or food. I don't eat for an hour after taking the tablet and I look after my health and my food. I have been on a gluten and dairy free diet, but came off as I was confused by the advise after my doctor said this wasn't necessary when the celiac results came back ok.
Is there anyone else out there that had the same type of issues? It's driving me nuts as it effects every part of my life. If anyone has any advice or has gone through the same type of situation it would be great to hear from you.
Cheers
Kate
Is there anyone else out there that had the same type of issues? It's driving me nuts as it effects every part of my life. If anyone has any advice or has gone through the same type of situation it would be great to hear from you.
Cheers
Kate
COMMUNITY LEADER
This is a very old thread and kate20541 has not been active on the forum since this thread was posted, so it's very unlikely she will respond.
I too have the erratic thyroid levels. I am post Grave's and have Hashi thyroiditis, fibromyalgia, neuropathy, gastritis (probably from h-pylori). I am doing some research into Lyme's and leaky gut. Do you have any other disorders? Usually, if you have 1 autoimmune disorder, you will have at least 1 or more other. I have been on 75 mcg. of L-thyroxine, which worked for about 3 yrs. I have been tested for MS and Myositis, but the test 1st showed positive, and then the nest test showed negative.
The TSH ranges is around 0.50 to 5.0. My doctors still state its with in the "normal" range, but I know I function better when I am somewhere in the mid of the range. The doctors usually do not do much if your anywhere with the range of 0.50 to 5.0. It's crazy!
The TSH ranges is around 0.50 to 5.0. My doctors still state its with in the "normal" range, but I know I function better when I am somewhere in the mid of the range. The doctors usually do not do much if your anywhere with the range of 0.50 to 5.0. It's crazy!
Hi Kate,
Wow! We sound like twins. I have been dealing with erratic thryroid levels for about 10 years. I started taking Synthroid at age 25 when I was diagnosed Hypothyroid. On Synthroid, I was able to stay within normal ranges until my son was born when I was 29. A couple years after his birth, my thyroid has swung wildly from severely Hypo to drastically Hyper. The doc does a med adjustment, it gets better for a few weeks but then it goes crazy again. I am a diagnosed Celiac & have been GF for 15 years. I live in a clean, rural environment. Live a stress-free lifestyle. Take walks with my dog almost daily. Avoid sugary/junk foods. I, too, take my med first thing in the morn & then wait an hr. Kate, your first post was in 2011 - have your docs been able to help your thyroid rebalance? I'd love to have an update on your health.
Wow! We sound like twins. I have been dealing with erratic thryroid levels for about 10 years. I started taking Synthroid at age 25 when I was diagnosed Hypothyroid. On Synthroid, I was able to stay within normal ranges until my son was born when I was 29. A couple years after his birth, my thyroid has swung wildly from severely Hypo to drastically Hyper. The doc does a med adjustment, it gets better for a few weeks but then it goes crazy again. I am a diagnosed Celiac & have been GF for 15 years. I live in a clean, rural environment. Live a stress-free lifestyle. Take walks with my dog almost daily. Avoid sugary/junk foods. I, too, take my med first thing in the morn & then wait an hr. Kate, your first post was in 2011 - have your docs been able to help your thyroid rebalance? I'd love to have an update on your health.
This is an interesting problem and one that plagued me.
I was dxed hyperthyroid in my teens but not with graves, levels seemed to go up and down. It got controlled but came back high when I was in my thirties so the thyroid got radiated.
Later I dveloped FM and erratic levels again. This was eventually controlled by taking plaquenil and then later found out I had lyme disease.
Theres a really interesting theory into all of this that I am investigating about benign hydrocephalus and its affect on the pituitary that may be causing erratic endocrine. getting the pressure relieved through medication could resolve the endocrine problems, fatigue and mental confusion.
check out driscoll theory EDS Cares network.
hope this is useful to you
I was dxed hyperthyroid in my teens but not with graves, levels seemed to go up and down. It got controlled but came back high when I was in my thirties so the thyroid got radiated.
Later I dveloped FM and erratic levels again. This was eventually controlled by taking plaquenil and then later found out I had lyme disease.
Theres a really interesting theory into all of this that I am investigating about benign hydrocephalus and its affect on the pituitary that may be causing erratic endocrine. getting the pressure relieved through medication could resolve the endocrine problems, fatigue and mental confusion.
check out driscoll theory EDS Cares network.
hope this is useful to you
Hi Barb
Thank you so much for your comments. It's made me stop to re-evaluate what both myself and the doctors are focusing on. The T4 and T3 levels are both in range and though they fluctuate slightly they do look healthy when comparing them to the recommended reference ranges.
My latest T3 results have been between 3.4 and 4.8 and my T4 has been between 13 and 17.5.
I do seem to become exhausted and suffer a wide range of side effects, but maybe I'm looking in the wrong area for answers!! The endocrinologist diagnosed me with chronic fatigue, but perhaps I should take the lifestyle changes, like a gluten free diet more seriously (I do eat well and take care of my health), but can crave quick fixes and have a fairly stressful job.
Again many thanks - it's good to be in contact with people who can offer a different perspective - it really helps.
Kate
Thank you so much for your comments. It's made me stop to re-evaluate what both myself and the doctors are focusing on. The T4 and T3 levels are both in range and though they fluctuate slightly they do look healthy when comparing them to the recommended reference ranges.
My latest T3 results have been between 3.4 and 4.8 and my T4 has been between 13 and 17.5.
I do seem to become exhausted and suffer a wide range of side effects, but maybe I'm looking in the wrong area for answers!! The endocrinologist diagnosed me with chronic fatigue, but perhaps I should take the lifestyle changes, like a gluten free diet more seriously (I do eat well and take care of my health), but can crave quick fixes and have a fairly stressful job.
Again many thanks - it's good to be in contact with people who can offer a different perspective - it really helps.
Kate
Hello Sally
Thank you so much for your comments. It's made me stop to re-evaluate what both myself and the doctors are focusing on. The T4 and T3 levels are both in range and though they fluctuate slightly they do look healthy when comparing them to the recommended reference ranges.
My latest T3 results have been between 3.4 and 4.8 and my T4 has been between 13 and 17.5.
I do seem to become exhausted and suffer a wide range of side effects, but maybe I'm looking in the wrong area for answers!! The endocrinologist diagnosed me with chronic fatigue, but perhaps I should take the lifestyle changes, like a gluten free diet more seriously (I do eat well and take care of my health), but can crave quick fixes and have a fairly stressful job.
Again many thanks - it's good to be in contact with people who can offer a different perspective - it really helps.
Kate
Thank you so much for your comments. It's made me stop to re-evaluate what both myself and the doctors are focusing on. The T4 and T3 levels are both in range and though they fluctuate slightly they do look healthy when comparing them to the recommended reference ranges.
My latest T3 results have been between 3.4 and 4.8 and my T4 has been between 13 and 17.5.
I do seem to become exhausted and suffer a wide range of side effects, but maybe I'm looking in the wrong area for answers!! The endocrinologist diagnosed me with chronic fatigue, but perhaps I should take the lifestyle changes, like a gluten free diet more seriously (I do eat well and take care of my health), but can crave quick fixes and have a fairly stressful job.
Again many thanks - it's good to be in contact with people who can offer a different perspective - it really helps.
Kate
COMMUNITY LEADER
I agree with Sally - you need to have your FT3 and FT4 levels tested. Those are the actual thyroid hormones, and are a better indicator of what's happening than TSH.
Do you know if you have Hashimoto's Thyroiditis? It's often common for one to swing wildly, going from hypo to hyper, in the earlier stages of Hashi's.
How did you feel with the lower (0.37) TSH? My TSH stays at < 0.01 all the time and I feel fine, so just because your TSH drops down, doesn't mean you're hyper. By the same token, some people have TSH levels that routinely stay high, but it doesn't mean they are hypo, either. It all depends on the levels of the FT3 and FT4.
Symptoms relief is what you are after, not a "perfect" TSH level. FT3 levels tend to correlate best with symptoms.
Do you know if you have Hashimoto's Thyroiditis? It's often common for one to swing wildly, going from hypo to hyper, in the earlier stages of Hashi's.
How did you feel with the lower (0.37) TSH? My TSH stays at < 0.01 all the time and I feel fine, so just because your TSH drops down, doesn't mean you're hyper. By the same token, some people have TSH levels that routinely stay high, but it doesn't mean they are hypo, either. It all depends on the levels of the FT3 and FT4.
Symptoms relief is what you are after, not a "perfect" TSH level. FT3 levels tend to correlate best with symptoms.
have your doctors only tested TSH, or are they also testing FT3 and FT4?
I would like to see soem FT3 adn FT4 numbers. Maybe your meds should be adjusted on the basis of these and how you feel, and ignoring the wildly swinging TSH.
I would like to see soem FT3 adn FT4 numbers. Maybe your meds should be adjusted on the basis of these and how you feel, and ignoring the wildly swinging TSH.
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