I'm 57 female, TSH=34.9 (nornal range: 0.3-5.0), FT3=2.1 (1.8-4.2), FT4=1.0 (0.6-2.0) currently. I also have Wolfe-Parkinson-White syndrome so have been susceptible to episodes of tachycardia all my life. Ten months ago I had many symptoms of hypothyroidism; PCP put me on 88mcg T4 (levothyroxine). This immediately increased both frequency and duration of tachycardia. I slowly decreased the dose to 25mcg, but still was bothered by frequent tachycardia. My electrophysiologist started me on 25mg atenolol (beta blocker). This eliminated the tachycardia at 25mcg of T4. All my symptoms of hypothyroidism had gone at 25mcg (and have never returned), but my labs were not "right". I've increased my T4 over time to 69mcg to try to pacify my PCP - all she can say whenever I have labs is "need more T4". My labs haven't changed a whole lot since I was taking 25mcg (TSH=43.9,T3=2.1,T4=0.8 eight months ago). I recently increased atenolol to 37.5mg once I reached normal T3 and T4 levels, since tachycardia was increasing with higher dose of T4. I understand more atenolol means more T4 means more atenolol, ad nauseum. I fail to see the advantage of continuing to increase the T4, only to have to increase the atenolol. I read almost nothing about patients with high TSH and no symptoms, although I have read some very condescending comments suggesting we have symptoms and just don't know it. I assume a good part of the reason we don't hear much about people with high THS and no symptoms is that they are not diagnosed since they have not seen their doctors with symptoms.
I would appreciate hearing from anyone caught in this scenario - we get VERY little support - everything seems to be directed to subclinical hypothyroidism. I would like to know if a high TSH really does any damage. I would also like to know if any other thyroid medications might be more effective. Is there really any harm in continuing at my current dose (PCP wants me to increase again) until (if) my symptoms return? Thanks.
Your Free T3 and Free T4 are both low.
Having your Free T3 low cannot be healthy.
I don't know why you have no symptoms. A high TSH by itself won't hurt anything as long as it doesn't tax your Pituitary gland too much.
You are in a unique situation, so I hesitate to say do this or try that.
If you have no symptoms you have no symptoms.
Your Free T3 should be between 3.0 and 3.5. You are barely above lower limit.
It's all rather contradictory.
You could try a different medication, but I think adding T3 would give you more heart problems. A T4/T3 med might give you fits the first hour or so each day.
You could try a different brand of levothyroxine. Synthroid or Levoxyl or...I'm not sure what other brands there are available. Silly as it sounds, it may be one of the fillers that is giving you trouble.
I know it's not the input you requested, and maybe you are right and you have too much thyroid hormones. The tests look like you need more.
I hope you figure the whole thing out and get it resolved.
Welcome to the forum.
I read your question and was hooked....so....I did some googling....and I'm not sure if this completely applies to your situation since you have been taking levo....but...
...according the the Harvard website subclinical hypo is high TSH and normal t4. Their site says no symptoms no treatment. However, they do say that full blown hypo is likely to develop eventually and that symptoms can be very subtle. and ...
...a study done by a research group (whose name I forgot to write down, oops) found that people with high TSH reported less pain...
...interesting....a type of thyroiditis called DeQuervain thyroiditis has high TSH and low T4 and one of the treatments for it is the med atenolol, which you mention that you are taking...google medline health for more info
Since you have the other health issues and the thyroid may be a piece of the puzzle...don't do anything without your doc's knowledge....
Thanks so much for your input. It is all rather contradictory. I'm now on generic T4, but have been on Synthroid, with no noticable change. I also tried adding a very small amount of T3 (5mcg) at one point, but the labs got even more abysmal (I had lowered the T4 so that the overall dose would be comparable to what I was taking at the time), and I didn't feel any different, so I discontinued the T3.
The tests do look like I need more, but my symptoms say not. Immediately after starting thyroid therapy, I lost 25 lbs. That was last March, and I've maintained my weight since then. I have never, in my entire life, been able to maintain my weight for even one month - I always joked that if I wasn't losing weight, I was gaining it. This makes me believe that my thyroid may have been underperforming forever.
Thanks for replying to me and for your research. I thought I had googled all there was to google, but apparently I missed a fair amount!
I think you're right about the subclinical hypo. Before I started on T4, TSH was high and T3 and T4 were both low, so I'm now subclinical, but only because I'm taking the T4, otherwise there wouldn't be any sub- about it. Symptoms can be very subtle, but I had a big enough variety of them before going on T4, that I now know what to look for. Interesting also that I have a very high pain threshhold and always have had.
I also found the DeQuervian interesting. In retrospect, I think I know when my thyroid gave up the ghost. Interestingly enough, it was in the midst of a very nasty viral bronchitis. They say it usually goes away by itself, but permanent hypo is not unheard of. That was several years ago.
My big concerns at the moment are: 1) my PCP and I are going to come to blows (exagerating) and 2) that I'm in a vicious circle, because atenolol increases the need for thyroid hormone, which, in turn, causes more tachycardia and increases the need for atenolol. I see this all reaching a logical absurdity, where I'm taking the max dose of atenolol, my labs are still not right, and my PCP still sends me the same cryptic note after labs - "need more thyroid" (that is a direct quote, by the way). She strongly implies there is no association between the T4 at my levels and the tachycardia. My electrophysiologist disagrees with her, by the way. We live in a very small town, only 4 PCPs (two of whom are married to each other, which for all intents and purposes makes it 3), so we don't have a lot of choices. I also hate to look for a new PCP, so am looking for info that I can bring to my current doctor, so we can work together better. Alternatively, there are times when I think I really need a new doctor, so input on that aspect would also be appreciated.
Once again, thanks for your help and research. I printed a bunch of stuff off, so have some reading for this evening.
PCP hasn't been doing any other blood work until thyroid hormones level off, so I have to say I don't really know (my insurance isn't great). Last lipid panel showed slightly high total, but my HDL regularly tests in the high 80s and often comes back at the highest value of the test range. From what I've read, with HDL like that, there's probably not a whole lot to worry about. I'll check out osteo...
I was reading your response to another question, which brought to mind one of my own. You seem to know more about test results than my PCP! If she knows what you do, she's not telling me - probably thinks I couldn't possibly understand.
Here's my whole test and meds history:
Normal ranges: TSH 0.3-5.0 FT3 1.8-4.2 FT4 0.6-2.0
So...If you compare 2/4 results and dose with 10/3, doesn't it seem like very little has changed? Shouldn't there be a bigger difference in labs at 2.75 times the T4 dose? Am I out of my mind in thinking the T4 just doesn't seem to be working? It just doesn't seem like throwing more T4 at the problem is going to change a whole lot. At this rate, I'll be in permanent tachycardia long before I get my FT3 to 3-3.5. I was so pleased when I got my most recent results back and I had crept back into "normal" range, then the "need more thyroid" comment from my PCP just took all the wind out of my sails.
Do you have any feel for just how much the atenolol might be affecting all this?
Is it possible that a very low T3 is normal for me or that my body somehow flushes out the excess in deference to my WPW?
I know these are tough questions and ones that DO make thyroid therapy rocket science. However, I'd be really interested in your opinions.
Looking at those two sets of tests, very little has changed.
I read about atenolol, and there do not seem to be any contra-indications regarding hypothyroidism or thyroid medications. It should not be interfering with hormone levels.
I'm not an expert, but I don't think it is normal for anyone to have a T3 level that is half or less that of the average person. I'm sure the natural level varies from person to person, but I think the variation is less than what you are showing.
T3 is vital to sustain life. I haven't read any studies or medical literature that discusses cases where a person is healthy with an extremely low Free T3.
If your Free T4 was closer to the upper limit, I would say ask to have a reverse T3 test run. But your Free T4 is not all that high. It is now high enough to sustain the conversion of Free T4 to T3, but it could still be higher.
Odd how the TSH varies so much compared to the T4/T3, huh? That is not unusual. It is why people don't like the TSH test all that well. The actual thyroid hormone measurements tell you more than just the TSH.
The WPW...have you considered radio frequency ablation for that? Just curious. My wife had it done to fix an electrical problem with her heart.
I don't know if that condition may have an influence on how the body processes thyroid hormones. The adrenals can force their will on the thyroid, manipulate thyroid function to benefit themselves, so it is possible that other organs may be able to do the same.
Your adrenal glands are not doing this, though. I just mention it as an example.
Some people have a devil of a time getting to the proper dosage without having the same problems you are having. They need 100mcg of med, the doctor starts them at 75mcg, and they develop symptoms of hyperthyroidism, including heart problems. The doctor lowers the dose to 50mcg, and a few months later lowers it to 25mcg, because the heart symptoms are back. All the time their hormone levels stay too low.
A few members here are dealing with it right now. I'd say who if I could remember.
The only helpful suggestion I can offer is to try Armour, which would get you away from levothyroxine completely. Unfortunately, it is a combo T4/T3 med, and you would have increased heart rate for an hour or two every time you took it. It is best to split the dose, so you would experience that twice a day.
It LOOKS like the atenolol is causing an absorbtion problem, whether literature mentions it or not. Are you taking the two drugs close together? Are you taking calcium? Ignoring symptoms and looking at the test only, it looks like the atenolol (or something) is blocking any attempt to increase your hormone level.
What if you discuss this with your doctor and see if a drug other than atenolol would work as well. Stop the levothyroxine, wean off the atenolol, and start over. It's risky, because your hormone levels will drop off the chart, but it may be the solution.
You are taking your levo first thing in the morning on an empty stomach, yes? No food or other meds for an hour, no calcium for at least four hours, space other meds at least four hours off if practical.
If you need to take the atenolol first thing in the morning, you could take the levo at night, but you have to take it on an empty stomach. No snacks for maybe two hours before you take the levo.
Thanks again for your comments - you're a big help.
You're right, there are no contra-indications between T4 and atenolol. However, my EP warned that taking it would probably increase the amount of thyroid meds I need, and my PCP said atenolol inhibits the conversion of T4 to T3. At least they both agree on something.
I'm not trying to be confrontational here, just trying to make logical sense of it all...But why do they call FT3 of 1.8 to 4.2 "normal" and then proceed to want it at 3.0-3.5? Doesn't the lower limit of 1.8 imply that in establishing their norms there were healthy people with T3 levels as low as 1.8? I may be close to the tail of the curve, but the real aberrant readings should have been thrown out of their sample. Also, if my body is so desperate for T3 (according to the TSH), why is there ANY floating around free, not being used? My PCP says that, since normal TSH is 5 (at highest), mine at close to 35 represents at least 7 calls from the pituitary for T3. Is this really how it works? Sounds a bit simplistic to me.
My PCP does seem to understand that TSH can be all over the place. She mentioned that it can even swing pretty wildly intraday.
I have considered RA. Until I started on T4, my WPW was under control with no meds, the risk of the procedure is about the same as the risk of a negative event from the WPW, my husband and I are both self-employed so have very high deductible health insurance (the RA would mean about $12k out of our pockets). However, the main reason I haven't is that the thought of the procedure makes me absolutely want to throw up! 2-4 hours, just sedated, not anesthetized, with wires poking around in your heart...gives me tachycardia just thinking about it.
Your comment about the adrenals is very interesting. If one organ can affect the thyroid, I suppose it would be naive to assume another cannot.
Also, your comments on proper dose are very pertinent. PCP started me on 88mcg. If you read the insert in the Synthroid, it says that if you are over 50, or if you have a history of arrythmias, or if you've been hypothyroid for a long time (and I have to confess to ALL), the starting dose should be 12.5-25mcg, with increases at 4-6 week intervals, as tolerated. I had to cut the 88 in half, then went to 25, and the tachycardia was still raging, thus the atenolol.
Since you know that other members are dealing with this problem, I may pose another question that might elicit a response from others with arrythmias. Thanks for the suggestion.
My PCP goes absolutely ballistic at the mere suggestion of Armour (lipstick or no lipstick!). I have read that the T1 or T2 in Armour may have a positive effect on heart regulation. This will mean changing PCP - she was rabid when I suggested it, so much so that I wouldn't trust her to have any experience or skill in the nuance of prescribing it.
I do take both drugs together (first thing in the morning). EP said "no problem". I really feel I need to take the atenolol before or at the same time as the T4 . I could take the atenolol first thing, and the T4 an hour before lunch. I eat a very light breakfast 7-8am and virtually never eat again until noon. No other drugs, supplements, etc.. It's a cheap and easy experiment. I've also been waking up frequently between 2:30 and 4:30 am and staying awake for 2+ hours...bumping that up a few hours would be great.
However, more than I'm worried about absorption problems, I'm truly afraid for my T3 or T4 to go up. So far, this has always meant increased episodes of tachycardia. It's not a pretty trade-off, tends to make you a bit anti-social. I've never increased T4 without problems, and I'd really like everyone to be happy that I'm in normal range at all, especially since all the symptoms I had before going on meds have gone away (and I had plenty).
Unfortunately, when studies were done a decade or two back, which set the limits that we use today, the studies were flawed. They didn't weed out people who had thyroid problems.
The screening process did not test people for antibodies or people who were symptomatic. They only excluded people being treated for thyroid conditions.
That skewed the test results to look like the upper limit of healthy TSH is 5.0. Some labs even use 5.5.
The limits for Free T4 and Free T3, when the tests were invented, followed the range for TSH.
Doctors now understand that the target TSH for most hypothyroid patients is between 1.0 and 2.0. Some understand that a TSH of 2.5 is high enough to give a person symptoms.
It's made it a nightmare for people to get treatment, and for understanding test results. Many doctors still go by the old recommendation that 5.0 is normal, and treatment is indicated when the TSH reaches 10.0. It's only been in the last two or three years that there has been a major shift in thinking on that policy.
I mean, where is the logic in thinking that a TSH of 7.5 is a little high, but when you are put on medication suddenly 1.0 is the goal regarding dosing.
I know from looking at test results for a year and a half, that if your Free T3 is below midline on the test, your TSH will be high. Not 34.5, but higher than the doctor wants it.
Why they don't run a new study and establish reasonable ranges is a good question. I suppose we'd have too many sick people running around. You'd think the makers of thyroid medication would be all over that, because the number of treated patients would go up.
There have been studies run that show the true healthy range for TSH is more like 0.8-1.8, with allowance for a percentage of people who fall above or below that. But "the medical establishment" is slow to change things or admit they are wrong.
The upper limit for TSH is now 3.0, but labs and doctors are not quick to jump on the bandwagon. The ranges for free T4 and Free T3 need to be modified, but you see how slow the acceptance of the new TSH range (changed five years ago) has been.
I understand your desire to take your heart med first thing in the morning. I took Toprol XL for two years, and this is how I did it. I took my Synthroid first thing upon waking, and sat for an hour at the computer, or went back to bed. As soon as that hour was up, I took the heart med. Then I had to sit or lay for another hour before I could take a shower without feeling like I needed supervision.
It stunk, and ate up half the morning. I needed the Toprol as soon as I got out of bed.
Start a thread asking for imput from people who have had trouble tolerating a theraputic dose of levothyroxine. I'm not sure how to word the title, but if you catch their attention, you will get quite a few responses.
I can't tell you how much more helpful you've been to me than my PCPs terse "need more thyroid"...not to mention cheaper! Have you considered writing a book?...seriously.
I have to agree with you about the illogic of TSH 7.5 being "a little high", and then after treatment to goal becomes 1.0. I feel I'm in a similar situation, but the polar opposite. My labs were dismal before going on T4. After starting on T4, my symptoms went, now no one's going to be happy until all my various and sundry Ts are stellar. But, I now have a much clearer idea of where they're probably coming from.
Have you read Our Daily Meds by Melody Petersen? It's an expose' of the pharmaceutical industry and absolutely riveting. Drug companies refuse to put any money into a drug that is no longer under patent. Their big bucks come from patent drugs that they can get people hooked on for the rest of their lives. It probably explains why no one is eager to redo the ranges. You might enjoy the book.
I'm working on wording for a new question about proper thyroid dose vs. tachycardia. I'll try to post one later today.
You have been a terrific sounding board. You've really helped me to codify the questions I need answered, and to anticipate some of the responses I might get. I haven't decided yet whether to contimue with my current PCP or find a new doctor, though I'm leaning toward the latter. Either way, I have a much better idea on how to approach them. Thank you for all your time.
High TSH, normal FT3 and FT4, symptoms gone.
TSH=34.9 (nornal range: 0.3-5.0), FT3=2.1 (1.8-4.2), FT4=1.0 with little or no symptoms. This suggests PRTH (Pituitary Resistance to Thyroid Hormone), see papers by Refetof. This is a very specialist area, you would need to see an endocrinologist who specialises in this area.
Yes, thanks...three years later, and I know that now! Luckily, I found an endo who recognized it, also, just a few months after posting this question. PRTH is our "working clinical theory", and ignoring my TSH works just fine for me.
Do you have PRTH as well, or are you just into reading articles designed to cure insomnia??? LOL
I'll check out Refetof's papers...name doesn't sound familiar, but it's been a while since I researched it heavily.
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