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Marked fluctuation in TSH
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Marked fluctuation in TSH

Hi, I've been taking Synthroid for the last year (0.75) because my TSH went from 1.30 to 6.0 and I was having symptoms. Last April my TSH was 1.35, but as I was still too tired, I saw an endocrinologist. Today he called me with the results. Only five months after and taking the medication regularly, I have a TSH of 26. The endo says he's as surprised as I am, but he increased the dosage to 1.12 (I have to pick up the prescription today). My adrenals and other values are fine. Any ideas?

Thanks a lot!
13 Comments Post a Comment
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649848_tn?1357751184
First off, TSH fluctuates greatly, even intraday, for a variety of reasons; therefore, it's not a good indicator of actual thyroid hormone levels. It should never be used, alone, to diagnose or treat a thyroid condition.

If you have Hashimoto's, it's not unusual to have to adjust your medication periodically, as your thyroid loses function.  You should be tested every few weeks until your levels are stabilized, not tested once every 6 months.  

You need to also be tested for Free T3 and Free T4, which are the actual thyroid hormones, as well as TSH.  

Going from 75 mcg to 112 mcg, is quite a large jump.  I can't imagine why he didn't try you at either 88 mcg or 100 mcg first, in case, either of those would be sufficient.
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Avatar_m_tn
Hi Barb, thanks for your answer. I don't think I have Hashimoto's. The doctor never mentioned anything about it. He did say my T4 was OK, but he never said anything about the T3. I have to repeat the tests in November and I will ask him when I see him but he only ordered TSH tests. He seemed to think that 26 was a big jump and he told me he was surprised... Anyway, I wanted to know if everyone else had experienced such a pronounced increase because, to be honest, I'm at a loss. I never went higher than 6 and suddenly I'm 26!

Regards,

Maria
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649848_tn?1357751184
Hashimoto's is the most common cause of hypothyroidism in the developed world, so I'd be more surprised if you didn't have it.  In order to find out, you'd have to be tested for thyroid antibodies.  Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).  Many doctors don't test for antibodies; they just assume Hashimoto's.  Many, also, don't tell you that's what you have.  

Additionally, many doctors, also, don't test for Free T3 because they think it's irrelevant, when, in fact, it's the hormone that correlates best with symptoms.

Yes, going from 1.35 to 26 is quite a jump.  I am sort of surprised that your doctor wouldn't have a clue as to why, though.

"I wanted to know if everyone else had experienced such a pronounced increase because, to be honest, I'm at a loss. I never went higher than 6 and suddenly I'm 26".  Yes, many of us have had this happen; as healthy thyroid tissue is destroyed, the thyroid produces less and less hormones, so you have to keep increasing medication dosage to accommodate. Once the thyroid produces no more hormones, you should level off and stay relatively steady.

"He did say my T4 was OK" - do you happen to know the actual result (and reference range) of that test?  And was it Free or Total?  There's a big difference.  Many times, FT4 can be in range, but, too low in the range, or we don't, adequately, convert it to FT3, which is the hormone that actually enters the individual cells and correlates best with symptoms.

We've had a lot of members whose doctors only tested TSH and tried to determine dosage based on that.  Most of them are kept ill, because their testing is inadequate; therefore, their treatment is inadequate.

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Avatar_m_tn
He said my T4 was 17 in the April tests. Not sure if it was total or free, but with all the information you've given me, I will have a lot of material for questions next time. I don't know where you're located, but I'm in Quebec. Here (even if you've got medical through work), doctor visits and tests are covered by the government, so I wonder if they're told not to test unless it's absolutely necessary or something. It was very hard to get the referral for the specialist in the first place. Doctors are kind of semi-gods here.
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Avatar_m_tn
Many patients from Canada, Britain and Astralia that all have government run health care have often found it difficult to get the proper tests even performed. And some in getting the medication that they need because it is "controlled" or restricted.

Even here in the states it is only slightly improved as the "mini government" bureaucracies of the insurance companies try to restrict testing to keep costs down.  Little to they know having and paying for 6 different prescriptions to cover 6 different symptoms is likely much more expensive than paying for the proper tests and being medicated with one thyroid medication that would alleviate all 6 symptoms and thus only pay for 1 prescription.

You really need both the FREE T4 and FREE T3 tests done. And then many people have found when symptomatic that they need to be well up into the "normal" ranges in order to get rid of symptoms. In fact they need BOTH to be true.

1) Free T4 to be in the MIDDLE (50%) of the range if not slightly higher

And- that means in addition to

2) Free T3 to be in the UPPER1/3 of the range (66.7%)

Each person is different and will feel well at a different level. However the above target seems to be MUCH closer to what most people need than the outdated "normal" rage which is far too broad.  

Frequently people will be told they are "normal" and thyroid is not the problem when they are at the very bottom but within the normal range.  Being "somewhere" within the normal range is simply NOT sufficient for many if not most people!

You may also want additional testing that is common for Hypo thyroid pateints to be concerned with.

TPOab and TGab.  These are the antibodies to determine if you have Hashimoto's which is an autoimmune disease and the most common cause for Hypo in the developed world.

Vit D
Vit B-12
Iron
Ferritin

These are all consistent with fatigue which is one of the most common symptoms of low thyroid.  And again these often have an extremely wide range and many people need to be towards the upper end especially on Vit D and B-12 in order to feel well.
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Avatar_m_tn
Thanks a lot for your answer :-) I will make sure to print this page and take it with me so I can ask all the relevant questions when I see the endo. It's difficult to get the right answers when you don't know what to ask.

About doctors here, I hear you! I was relentless until my family doctor referred me to the specialist, but it wasn't easy. It's good that everybody has access to medical care but the system is far from perfect.

I will ask the doctor's secretary to send me a copy of my tests so I will have all the values. Will let you know more as soon as I get it.

Thanks again!
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Avatar_m_tn
Hi! I finally got the tests. TSH = 26.91 (it was 6.30 in April). Free T4 = 8.13 (it was 17 in April). Cortisol = 563. They didn't test my Free T3. All other values (iron, white cell count, etc. are normal).

Regards,

Maria
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649848_tn?1357751184
What's the reference range for the Free T4?  Ranges vary lab to lab so have to come from your own report.

Did they say why they didn't do the Free T3?
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Avatar_m_tn
The range is between 12.00 and 25 pmol/L. But they didn't test the T3, I don't know why. I'd like to call the doctor but I'm not sure what to tell him...
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649848_tn?1357751184
Your TSH is 26.91 (quite high) and FT4 is 8.13, which is actually below the range and your doctor is "surprised"?

It seems pretty obvious that 75 mcg synthroid was not enough for you. Free T4 has to be converted to Free T3 in order to be used by the individual cells.  You don't even have adequate FT4, so there's nothing to convert.  

It takes 4-6 weeks for a dosage change to take effect.  This thread was started approximately 3 weeks ago; are you having symptoms of hypo now?   Typically, blood work should be done about 5-6 weeks after a dosage change; are you scheduled for further blood work?
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Avatar_m_tn
Thanks for your answer Barb. I am scheduled for more tests in mid November. So far, I feel exactly the same as before. No changes as a result of the new medication, not even side effects like increased heart rate.

I have some questions though. Will the new dosage have any effect on my T4? Or will it only affect my TSH? Is this change in medication supposed to solve the problem or is the doctor failing to do something else? For instance, I have slightly high cortisol (563 while the reference is 171 to 536) and he told me my cortisol was fine. I want to make sure to ask the right questions.
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649848_tn?1357751184
"Will the new dosage have any effect on my T4?"  Yes, synthroid is a T4 medication and it should raise your FT4, so there's more to convert to the necessary hormone, Free T3.  If the dosage is adequate, it should affect ALL your levels, including TSH, will probably go lower.

"Is this change in medication supposed to solve the problem or is the doctor failing to do something else?"   I'm sure your doctor believes this change will solve the problem, but he's the only one!  yes, your doctor is failing to do something else....... he's failing to test Free T3, and since that's the most important of the hormones, he will keep you on a thyroid roller coaster.  He's also failing to test thyroid antibodies, which would confirm or rule out Hashimoto's, and if you know you have it, you'll know your thyroid will continue to produce less hormones and that you will need periodic med adjustments.
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Avatar_m_tn
OK, I see. So I will ask him to test T3 and antibodies next time I see him. I have to repeat my tests in mid-November, but I will make an appointment this week to see him right after the tests to talk about it.

I really appreciate your help. I see you know quite a lot about all this. I'm just starting to learn! :-)

Regards
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