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Weak & Tired - TSH Only Patient OD
Hi Folks,
I'm new to this forum but very interested in what I've read so far. Several months ago I was diagnosed as Hypo with a TSH of 11.2. That was the only test done and I was started on 100mcg L-Thyroxine. I'm being treated at a low income clinic BTW and the medicial professionals ??? are well meaning but that's about all. I'm also insulin dependent for 20+ years now and just found out that L-Thyroxine causes insulin resistance. This becuase my blood sugars went from low 200s fasting to 500+ a few months back with no apparent reason. Finally realized the time period matched my start on L-Thyroxine.
Anyway... I started feeling better at first after starting the medicine and had much more energy and finally felt warm again. After 1 week I increased the dose to 150mcg on my own mostly becuase the initial does was loosing it's perceived effect. The increase felt even better so I continued with no other issues other than serious loss of control with my blood sugar. A second TSH was done 30 days after starting /but/ I was not informed of the results until 75 days later. My does of 150mcg was also OK'd at that time. My doctor (at that time) would not tell me my second TSH result in a later visit and only reason I found out at all was by asking for a different doctor.
My new Doctor turned out to be a PA but was more on the ball that the first MD. I was told that my second TSH was .3 and the dose of 150mcg (OK'd by Doc) was too high. It was immediatly reduced to 100mcg but a little too late to avoid overdose symptoms which had been going on for about 45 days at that time. When this first dose reduction occured there was no TSH done either. Overdose symptoms continued during the next 30 days on 100mcg so I reduced it myself to 75mcg a week ago. A few day ago I had another appointment with the PA and got yelled at for reducing to 75mcg on my own. After the tougue lashing my dose was officially reduced to 75mcg by the PA which made it OK.
Now I feel totally exhaused after my morning dose each day and sometime need to lie down for a few hours before going to work. I'm a self employed systems engineer and work home so I can do this if need be. My point in writing is that there have been a lot of mistakes made in my treatment including the self inflicted errors I made in the dosing at first. However, that should have been caught by the MD I was seeing at the time but still my error in judgement. After suffering for so long I just wanted to feel better and was impatient. Aside from that it's obvious to me now that getting proper diagnosis and treatment for Thyroid issues is not easy and actually a real crap shoot.
Can anyone tell my why I feel so weak now /and/ how I should proceed to receive proper treatment?
Perhaps my experience will help others with a list of things NOT TO DO if nothing else. I'm normally very methodical and careful but really got hurt this time. Any comments appreciated... I just want to get well.
Thank You,
DBJ
I'm new to this forum but very interested in what I've read so far. Several months ago I was diagnosed as Hypo with a TSH of 11.2. That was the only test done and I was started on 100mcg L-Thyroxine. I'm being treated at a low income clinic BTW and the medicial professionals ??? are well meaning but that's about all. I'm also insulin dependent for 20+ years now and just found out that L-Thyroxine causes insulin resistance. This becuase my blood sugars went from low 200s fasting to 500+ a few months back with no apparent reason. Finally realized the time period matched my start on L-Thyroxine.
Anyway... I started feeling better at first after starting the medicine and had much more energy and finally felt warm again. After 1 week I increased the dose to 150mcg on my own mostly becuase the initial does was loosing it's perceived effect. The increase felt even better so I continued with no other issues other than serious loss of control with my blood sugar. A second TSH was done 30 days after starting /but/ I was not informed of the results until 75 days later. My does of 150mcg was also OK'd at that time. My doctor (at that time) would not tell me my second TSH result in a later visit and only reason I found out at all was by asking for a different doctor.
My new Doctor turned out to be a PA but was more on the ball that the first MD. I was told that my second TSH was .3 and the dose of 150mcg (OK'd by Doc) was too high. It was immediatly reduced to 100mcg but a little too late to avoid overdose symptoms which had been going on for about 45 days at that time. When this first dose reduction occured there was no TSH done either. Overdose symptoms continued during the next 30 days on 100mcg so I reduced it myself to 75mcg a week ago. A few day ago I had another appointment with the PA and got yelled at for reducing to 75mcg on my own. After the tougue lashing my dose was officially reduced to 75mcg by the PA which made it OK.
Now I feel totally exhaused after my morning dose each day and sometime need to lie down for a few hours before going to work. I'm a self employed systems engineer and work home so I can do this if need be. My point in writing is that there have been a lot of mistakes made in my treatment including the self inflicted errors I made in the dosing at first. However, that should have been caught by the MD I was seeing at the time but still my error in judgement. After suffering for so long I just wanted to feel better and was impatient. Aside from that it's obvious to me now that getting proper diagnosis and treatment for Thyroid issues is not easy and actually a real crap shoot.
Can anyone tell my why I feel so weak now /and/ how I should proceed to receive proper treatment?
Perhaps my experience will help others with a list of things NOT TO DO if nothing else. I'm normally very methodical and careful but really got hurt this time. Any comments appreciated... I just want to get well.
Thank You,
DBJ
Hi,
I think I should STOP all meds and wait 4 weeks so my body normalizes to where it was before this nighmare started. Then see an experienced doc who will do a proper job of testing. I'd rather have sure blood sugar control and no HYPER symptoms than what I'm going through now. I lived HYPO for years doing better than I am now with help from my present docs.
What do you think about this plan?
Danny
I think I should STOP all meds and wait 4 weeks so my body normalizes to where it was before this nighmare started. Then see an experienced doc who will do a proper job of testing. I'd rather have sure blood sugar control and no HYPER symptoms than what I'm going through now. I lived HYPO for years doing better than I am now with help from my present docs.
What do you think about this plan?
Danny
Danny
everything you are saying is because you are HYPO. you are wearing a jacket because you are hypo. You are yawning because you are fatigue. My guess is, you are suffering from temporary HYPERthyroidism but you are still hypo. This happens when you take too much too fast. The best thing you can do is start off small and build up over time. Its a very painful process but it does work. What Gimel wrote (ive copied it below) should be put on a pamphlet and given out to every new hashimotos patient.
"You were started on too large a dose. The normal starting dose is more like 25-50 mcg, with an increase, if needed, in 6-8 weeks. That is because when taking a T4 med like you did, it takes 4 weeks for the med to build up to even 90% of its final level in your blood. Symptom relief sometimes lags behind blood levels of Free T3. So, obviously you did not have enough time for the dosage to have full effect before you increased it. Now at the 75 mcg level, you have not had time for the your body to reflect that dosage. Since you are already having hypo symptoms, it may get worse before you are ready for accurate tests to be done, and your dosage changed. I'd say that you are probably about 3 weeks away from being able to get tests done to get a good picture of your blood levels of thyroid hormone. "
are you using an endo or a general dr. ? can you find someone that specializes more in thyroid treatment and not an endo? Endos are great for figuring stuff out, but some of them wont get into the "meat and potatoes" of the treatment.
everything you are saying is because you are HYPO. you are wearing a jacket because you are hypo. You are yawning because you are fatigue. My guess is, you are suffering from temporary HYPERthyroidism but you are still hypo. This happens when you take too much too fast. The best thing you can do is start off small and build up over time. Its a very painful process but it does work. What Gimel wrote (ive copied it below) should be put on a pamphlet and given out to every new hashimotos patient.
"You were started on too large a dose. The normal starting dose is more like 25-50 mcg, with an increase, if needed, in 6-8 weeks. That is because when taking a T4 med like you did, it takes 4 weeks for the med to build up to even 90% of its final level in your blood. Symptom relief sometimes lags behind blood levels of Free T3. So, obviously you did not have enough time for the dosage to have full effect before you increased it. Now at the 75 mcg level, you have not had time for the your body to reflect that dosage. Since you are already having hypo symptoms, it may get worse before you are ready for accurate tests to be done, and your dosage changed. I'd say that you are probably about 3 weeks away from being able to get tests done to get a good picture of your blood levels of thyroid hormone. "
are you using an endo or a general dr. ? can you find someone that specializes more in thyroid treatment and not an endo? Endos are great for figuring stuff out, but some of them wont get into the "meat and potatoes" of the treatment.
I wanted to add that I'm wearing a jacket now becuase I'm cold when it's very hot outside. Also, I'm yawning every 5 or 10 minutes when I had what should have been enough sleep. These are some of the same symptoms I had when I first found out my TSH was 11.2 months ago.
It's like I'm going back to where I was before the treatment started. I've read that HYPER symptoms can sometimes look like HYPO symptoms. I'm really confused about what's happening to me.
Danny
It's like I'm going back to where I was before the treatment started. I've read that HYPER symptoms can sometimes look like HYPO symptoms. I'm really confused about what's happening to me.
Danny
First off... Thank you for taking time to write such a detailed reply. While the information it contains is extensive, I do understand it since I've been reading the information this forum contains for some time now. I finally decided to seek help here becuase my present medical guidance is lacking for sure.
I've come to understand just how ignorant health providers can be about proper diagnosis and treatment of Thyroid related issues. Especially with completely insufficient data to support ANY course of action as in most cases I've read about here and my own badly handled treatment. Also, in my case, there are complications from Insulin dependance which make diagnosis and treament more complex IMHO.
My present symtoms in summary are very low energy level levels, inability to stay asleep, lower arm and hand tremors on exertion of any kind, extremely hungry all the time which is not normal for me at all, very sluggish mental abilities and confusion, staring at written material for long periods without moving /or/ understanding, almost like a trance. Burning eyes which starts after daily dose of L-Thyroxine kicks in lasting until late afternoon. Indecisive and slow reaction time. Poor outlook for the future but not depressed, just tired of the rollar coaster ride the L-Thyroxine and insuling management is putting me through.
Before starting L-Thyroxine my diabetes was carefully and easily managed by proper diet /and/ daily insulin totals of about 15 Units of short acting Novalog with meals. After starting with L-Thyroxine my sugar levels went wild with morning peaks near 500 mg/dl. Many injections are required during the day to get down near 150mg/dl, which is best for me, and stay there. The daily ride up and down was making me crazy to say the least. This problem was finally stabilized a few weeks ago by adding Lantus (Long Acting 24hr Insulin) but now I'm taking a total daily dose of over 50 Units of insulin. (3x+ more)
I take my daily dose of L-Thyroxine at 7:30AM and the dose has been 75mcg for the past 9 days now. My energy is coming back a little the past couple days. I should mention here that the only reason I accepted the initial dosing of 100mcg and subsequent increase to 150mcg came from research at the Synthroid site. They recommented 1.7mcg per KG of body weight so in my case we have:
190lbs / 2.2lbs = 86.36 x 1.7mcg = 146.81mcg daily!
I feel that something is wrong there and that this assumes one needs the hormone in the first place. Without knowing my FT4 and FT3 there is insufficient information to proceed with treatment IMHO. My next appointment is in 60 days and another TSH was done last week.
So basically I'm stuck in a bad place without a complete change in my treament course /and/ some confirmation that L-Thyroxine really does cause insulin resistance. Until my sugar matabolism is under control I don't see how my general metabolic processes can be corrected???
Thank You again for any help you can provide and perhaps there are some diabetics available to comment here.
Danny
I've come to understand just how ignorant health providers can be about proper diagnosis and treatment of Thyroid related issues. Especially with completely insufficient data to support ANY course of action as in most cases I've read about here and my own badly handled treatment. Also, in my case, there are complications from Insulin dependance which make diagnosis and treament more complex IMHO.
My present symtoms in summary are very low energy level levels, inability to stay asleep, lower arm and hand tremors on exertion of any kind, extremely hungry all the time which is not normal for me at all, very sluggish mental abilities and confusion, staring at written material for long periods without moving /or/ understanding, almost like a trance. Burning eyes which starts after daily dose of L-Thyroxine kicks in lasting until late afternoon. Indecisive and slow reaction time. Poor outlook for the future but not depressed, just tired of the rollar coaster ride the L-Thyroxine and insuling management is putting me through.
Before starting L-Thyroxine my diabetes was carefully and easily managed by proper diet /and/ daily insulin totals of about 15 Units of short acting Novalog with meals. After starting with L-Thyroxine my sugar levels went wild with morning peaks near 500 mg/dl. Many injections are required during the day to get down near 150mg/dl, which is best for me, and stay there. The daily ride up and down was making me crazy to say the least. This problem was finally stabilized a few weeks ago by adding Lantus (Long Acting 24hr Insulin) but now I'm taking a total daily dose of over 50 Units of insulin. (3x+ more)
I take my daily dose of L-Thyroxine at 7:30AM and the dose has been 75mcg for the past 9 days now. My energy is coming back a little the past couple days. I should mention here that the only reason I accepted the initial dosing of 100mcg and subsequent increase to 150mcg came from research at the Synthroid site. They recommented 1.7mcg per KG of body weight so in my case we have:
190lbs / 2.2lbs = 86.36 x 1.7mcg = 146.81mcg daily!
I feel that something is wrong there and that this assumes one needs the hormone in the first place. Without knowing my FT4 and FT3 there is insufficient information to proceed with treatment IMHO. My next appointment is in 60 days and another TSH was done last week.
So basically I'm stuck in a bad place without a complete change in my treament course /and/ some confirmation that L-Thyroxine really does cause insulin resistance. Until my sugar matabolism is under control I don't see how my general metabolic processes can be corrected???
Thank You again for any help you can provide and perhaps there are some diabetics available to comment here.
Danny
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You should be aware that TSH is a pituitary hormone that is affected by so many variables that it is totally unacceptable as a a diagnostic for thyroid. At best it is only an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T3 and Free T4. A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
You were started on too large a dose. The normal starting dose is more like 25-50 mcg, with an increase, if needed, in 6-8 weeks. That is because when taking a T4 med like you did, it takes 4 weeks for the med to build up to even 90% of its final level in your blood. Symptom relief sometimes lags behind blood levels of Free T3. So, obviously you did not have enough time for the dosage to have full effect before you increased it. Now at the 75 mcg level, you have not had time for the your body to reflect that dosage. Since you are already having hypo symptoms, it may get worse before you are ready for accurate tests to be done, and your dosage changed. I'd say that you are probably about 3 weeks away from being able to get tests done to get a good picture of your blood levels of thyroid hormone.
In the interim we need to make you acquainted with some issues that you will need to follow up with the doctor.The first thing is that you need to be tested for Free T3 and Free T4 each time you go for testing. Free T3 is the most important because it largely regulates metabolism and many other body functions. Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate. I don't know what options you have, but if the doctor resists testing for Free T3 and Free T4, then you need to insist on it and don't take no for an answer. Note that those are for Free T3 and T4, not Total T3 and T4, which are not nearly as revealing.
Since hypo patients are frequently deficient in other areas as well, you also need to test for Vitamin D, B12 and ferritin.
Another thing you need to be aware of is that many hypo patients taking T4 meds find that their body does not adequately convert the T4 to T3. This will cause the Free T3 to be lower in its range than Free T4. Free T3 results in the lower half of the range are frequently associated with being hypothyroid. Many of our members report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range. In order to accomplish this, it is often necessary to supplement the T4 meds with T3 meds also.
I'm sure your head is spinning by now, so I'll stop and give you a chance to respond.