Thyroid Disorders Community
Fluctuating TSH
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Fluctuating TSH

I've had a fluctuating TSH now for the last eleven months with the last three months being wider fluctuations. My TSH looked as if it had stabilized at 0.5 and I felt pretty good. Then suddenly it went up to 2.51 and I felt awful. Suddenly meaning in a matter of thirty days.

Is there any way of catching it before my symptoms get worse? I don't know if I can handle any more fluctuations with worsening symptoms. Are there symptoms to watch for which occur just as the TSH is starting to rise?

The first thing I notice is dry hands. By the time my hands are dry, I slide down hill fast with other symptoms. And my doctor just told me to put ointment on it. Of course it didn't work because it was a symptom of my thyroid taking another dive. Maybe I am feel cold in a warm room first? Don't know.

Also I'm trying to find information on TSH fluctuating and only found one article so far. I would appreciate any more information you can provide.

Thanks.
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18 Comments Post a Comment
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Avatar_f_tn
Have you been diagnosed and on thyroid meds??

There are many reasons for TSH level to fluctuate and can very throughout the day - example if TSH is 1.5  it can fluctuate 1.0 - 4.0.

As long as the fluctuation is within normal range, the fluctuation should not be too much of a concern.  

If you are having sympyoms with your mentioned levels, they may not be thyroid related....however I am not a doctor and you should go by and trust what your doctor says.
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263988_tn?1281957896
Yes, I was diagnosed several years ago with hypothyroidism and severely under treated. Then I was diagnosed with Hashimoto's last year. I was on 150mcg (started on a lower dose several years ago) and am now on 175mcg because of my increased TSH. I didn't explain that the first time.

I didn't think a TSH of 2.51 is within normal range for someone being treated with medication. I read that the ideal range for TSH is 0.3 - 1.0. My current doctor likes to see the TSH around 0.1.

So ... is the fluctuating TSH a sign of complete thyroid failure? And how do I catch the next round before it does me in again.

Thanks.


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314892_tn?1264627503
Experts believe that a person's TSH does not normally fluctuate by more than 0.75 in either direction. Fluctuations larger than this are likely abnormal.
Fluctuating TSH is common in Hashimoto's and is just a sign that the thyroid goes through spurts of more/less function.
Just keep up on the testing to keep the TSH at a 1 as the doctor suggests. How often are you being tested?

Kitty
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Avatar_f_tn
WOW! the levels are getting lower and lower. For treated thyroids any where within your Labs reference range is expectable levels.
A TSH of 0.1 is suppressed level and applicable to severe health consequences, (with the exception of cancer or nodules) and I am surprised your MD approves of such a level.

Whether the target TSH level should be in the lower half of the reference range is controversial because there are no data demonstrating improved clinical outcomes with this strategy. Per AACE The Treatment target range TSH levels should be between 0.3 and 3.0 ccIU/mL although most Labs are not there yet, but some are closely arriving.  There are other considerations as to Lab levels, in short, each Lab has its own way of testing, probably with different types of machines to test and measure on which might represent and produce different  TSH numbers.   So what might seem a high or low range, really is not by that Labs method.

I am not sure we are on the same page as to fluctuation and might be talking two different issues.  If you are hypothyroid, the course of the thyroid to eventually stop functioning  This process might be quicker for some than for others, yet can take years for others, if at all (we live long enough to see it even happen).  Each time the thyroid is destroyed TSH will reflect it, relating that more thyroid hormone replacement is needed to compensate for the destruction.  This is not considered  or the same as TSH fluctuation.  

.
You keep up with testing on a regular bases, your TSH level and adjust meds. accordingly, with small (or low) does at a time.

There are many reasons for TSH level to fluctuate and can very throughout the day - example if TSH is 1.5  it can fluctuate 1.0 - 4.0.  So say experts.

Happy New Year - Good Luck and Best Wishes for 2008.


My comments are not to offend or offensive
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314892_tn?1264627503
Can you message me the reference from experts that say TSH can fluctuate from 1-4? I've only seen mention of the 0.75 variation being within normal limits.
You can actually post it here because I asked what the rules are regarding links. MedHelp said as long as it is a reference to an article and not for a product, we can post the links.

Thanks
Kitty
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209384_tn?1231171906
You can have Hashimoto's and Graves' which causes wide fluctuations.  Try directing a question to AR-10 and he can tell you all about this.  He has become an expert on the subject dealing with his thyroid issues.

I think maybe you mean that your endo wants your levels around 1.0?  0.1 would be considered very hyper.  It's okay if you make a typo on here, ignore anyone who takes it too seriously.

Dac
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209384_tn?1231171906
I'm with you, I would like to see that expert reference also.
Dac
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Avatar_n_tn
Is a 5.35 with a range of .40-4.50 scale high for TSH?  I've been reading through different posts.  I just got diagnosed with hypothryoid today and was not sure if this is really bad.  I was put on synthroid 50mcg.  Do I need to go see an Endo Dr.?  My regular doctor diagnosed me, but I do not see any T3 or T4 levels, am I supposed to get those too??
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209384_tn?1231171906
Yes, you are definitely hypo.  The current range is from 0.3-3.0, but most endos specializing in thyroid want it at around 1.0 or a little lower.  I would see an endo to see what is causing it.  And yes, you really need to have all the other blood work ran, but if you can get into an endo they will run all of it and will pay no attention to what your dr has run, so I would save that money.

Good luck.
Dac
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Thank you.  That helps. Do you know what the other tests, T3 and T4 tell you?  I've been trying to read about them, but I am a little confused as to what those two tests are for.
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213044_tn?1236531060
I'd like to read that data also.

The only paper I have read that addressed TSH fluxuation directly stated what kitty9309 posted. Any fluxuation greater than .75 is a bad thing.

That is why people struggle trying to find the right TSH for their body. Kitty may be best at 0.5 but my body may be best at 2.3. Each of us is a little different.

That is also why often a doctor will get a patient stable at 2.0 and then ignores the patient when they say symptoms are not abating. The doctor thinks between 1.0 and 2.0 is perfect, but the patient needs to be at 3.5 or 0.2 to be normal.


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213044_tn?1236531060
If you wade through all the jargon, down toward the bottom is a statement reflecting my statement regarding a TSH shift of .75 and the fact that it is not desireable.



Once having established the appropriate reference range, excluding confounding factors such as those listed in Table 1, it is also important to recognize the limitations of a population-based reference range from an individual patient-based reference range. Fraser and Harris (28, 29) pointed out that when an individual’s variation for a given test is narrow (i.e. their personal reference range), the value of the population-based reference range will be limited. In a study of normal men, Andersen et al. (8) demonstrated remarkably narrow individual reference ranges within a relatively small segment of the population reference range, i.e. confined to only 25% of a range of 0.3–5.0 mU/liter. This would suggest that a shift in the TSH value of the individual outside of his or her individual reference range, but still within the population reference range, would not be normal for that individual. For example, an individual (as in Anderson’s series) with a personal range of 0.5–1.0 mU/liter would be at subphysiological thyroid hormone levels at the population mean TSH of 1.5 mU/liter. This is consistent with studies of twins indicating that each of us has a genetically determined free T4 (FT4)-TSH set point or relationship (9, 30). In this context, Baloch et al. (10) estimated that it would require a measured TSH difference of 0.75 mU/liter to be significant in a given patient, a difference consistent with the narrow individual range observed by Anderson et al. (8). Thus, levels of TSH in an individual patient respond to fluctuations in serum FT4, but remain in a very narrow individual range and change very little unless the patient becomes hypothyroid or hyperthyroid (8).

link;

http://jcem.endojournals.org/cgi/content/full/90/9/5483
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209384_tn?1231171906
Sorry, I don't remember anything about the T levels.  Been a lot of years since I've had to deal with them.  Once thyroid is ablated there's nothing to measure.  I do know that instead of the straight T's you need to have FreeT's.  They are much more concise.
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209384_tn?1231171906
Good job, Bryan.  ;)
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263988_tn?1281957896
Thank you for the article on the TSH ranges and what is normal for an individual.

The range for my TSH was 0.47 - 5.0 mEq/L.
My last Free T4 was in the upper range.
My last Free T3 was lower than it should be, in mid range. However, I can't take any Cytomel [T3] right now.

When I was at 0.5 I felt just about right. I've been at 1.0 and felt fairly good too, however not as good as I do at 0.5. Earlier this year, I was over 3.7 and felt very ill. I basically couldn't do anything.
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213044_tn?1236531060
MANY thyroid patients spend months or years trying to find the perfect dosage for their body, much as you have been.

As you have found, there is a very narrow range of about 1.5 in variation of TSH that your body will tolerate, and no doctor knows what the set point for your body is. It is found by trial and error.

Why your TSH is fluxuating is another matter.

It could becuased by a gland that is slowly eroding and functioning less and less each month or year, requiring small increases in meds every so often.

It could be a gland, or a nodule, spurting out a bit too much every once in a while sending you out of balance.

It could be stress, illness, or overactivity that causes demand on the thyroid that it cannot provide, and then an overcompensation by the pituitary gland.

It could be that your gland is "sputtering", working full tilt and then slowing down and then working full tilt.

It could also be problems with the TSH receptors or how your body is converting your T4 or using your T3.

My problem with fluxuation is caused by a gland that is shot and spits out whatever it can. The gland is also disintigrating and random cells slough off and enter the bloodstream, sometimes bringing along stored hormone that should not be released.

Your problem may be similar, or it may require various tests to pin down a cause. Like finding your set point, there is a lot of guessing involved and requires a good diagnostician to run the correct tests and pinpoint a cause.

Unfortunately, it is a fairly common complaint on thyroid boards. I don't think it is pervasive. Most thyroid patients don't turn to the internet or even see an Endo, in my opinion. The majority are treated by General Practitioners and get along fairly well.

My Aunt was diagnosed Hypothyroid forty years ago and doesn't even know what an Endocrinologist is. My sister has had thyroid problems for twenty years and has never been to an Endo.

Then there are patients like us.
I hope you find the answer to your problem.

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263988_tn?1281957896
Thank you again.

I saw an endo when I had symptoms of another condition. The doctors in my area won't refer to an endo unless there are complications or a secondary illness.

Then I got misdiagnosed with sleep apnea when I really had another condition with similar symptoms.

My mother saw an endo the first time when she got diagnosed but hasn't since.

My other condition has gotten better during the time that my thyroid function worsened. That doesn't make sense to me. And when my other condition was the worst and I was very ill, my thyroid functioning got better. I thought the condition healing would cause my thyroid functioning to level off. And my primary physician thought the same thing. He was equally shocked at the TSH test results. Go figure! lol
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263988_tn?1281957896
Sorry DLA, I forgot to respond to you.

For hypothyroidism, my doctor wants the TSH around 0.10. However, he also said that he goes by the level at which the patient feels good. So for me that's 0.50 to 1.0.
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