Decreasing Med time frame

[Dexter1]

How long between each decrease of thyroxin should you wait to make another decrease? I had my first decrease a week ago and was better but am now starting to feel crummy again. Is it too soon to recheck my levels?

[Clutter]

Dexter1, dose adjustments of 25mcg every 6-8 weeks is the norm unless you were majorly overmedicated. Bloods are usually 6-8 weeks after adjustment. In what way are you feeling crummy?

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Dexter1 in reply to Clutter]

My drug level was twice what it should be. Don't have actual numbers. Some of my symptoms are returning after 1 week: sweating, body aches. Could also be due to having tonsillitis. Just didn't know how soon you would know if your level was still very high. 6 weeks seems like a long time to wait.

[greygoose in reply to Dexter1]

Dexter, who said it was twice what it should be? And how did they know?

As far as I know, it's impossible to tell what dose you 'should' be on until you're on it. So, saying you were on twice the dose sounds a little suspect to me.

Were you feeling bad on the original dose? And do you feel the same bad now? Or could you be feeling bad because you are now on too low a dose?

I think you ought to get hold of the numbers before you do anything else, and find out exactly what was tested, and what the result was.

[Dexter1 in reply to greygoose]

Hi greyhoose,

Here are my numbers-

TSH 3rd generation- .243

Free T4- 1.4

I'm sure it's not due to being on too low of dose. I started feeling terrible on 125mcg and was decreased to 112mcg. Felt better initially but after a week or so started getting a few symptoms back. So I'm assuming I'm just still on too much. Dr. took more blood today to run more comprehensive thyroid levels. I can post those Monday.

What do these numbers mean? The TSH is 1/2 of the lower ref range so I guess that's what the nurse was telling me.

[greygoose in reply to Dexter1]

TSH is meaningless once you're on thyroid hormone replacement. Unfortunately, doctors Don't know that.

Besides, it's not even suppressed. '1/2 of the lower ref range' is meaningless, too. I've no idea what that's supposed to mean. The truth is that TSH rarely reflects thyroid status - how you feel - so should never be used to dose by.

The FT4 is meaningless without the range. Do you have the range? It looks low, but I can't really say.

Besides, the only number that can tell you if you're over-replaced is the FT3, and you haven't got that.

I'll be very interested to see your new results - but Don't forget to ask for the ranges!

[Dexter1 in reply to greygoose]

T4 - .7-1.6

Tag- .400-5.1

That's where the "1/2 of lower range" came from.

[greygoose in reply to Dexter1]

It's still meaningless.

You cannot know if you are over-replaced unless you see your FT3. That is the important number. TSH has no bearing on your dose.

[Dexter1 in reply to greygoose]

Ft3 is 2.7

(2.3-4.2)

[greygoose in reply to Dexter1]

Your FT3 is practically at the bottom of the range, and you want to decrease your Levo?

If you decrease your Levo, your FT3 will go even lower, and you will feel very, very ill.

T3 is the active hormone. And it's low T3 that causes symptoms, not low TSH.

Your T3 has probably been low for a long time, and that is why you've been feeling bad. Not because your TSH was too low.

You weren't over-replaced, you were Under-replaced.

[Dexter1 in reply to greygoose]

Oh gosh. The nurse just told me he wants to decrease it again! I'll go see the endo before I do anything!

[greygoose in reply to Dexter1]

That doctor is dangerous! He has no idea what he's doing. He is going to make you very ill, and keep you ill. Can you change doctors?

[Dexter1 in reply to greygoose]

Going to see an endo

[Dexter1 in reply to greygoose]

What's the difference between t3 and t4?

[greygoose in reply to Dexter1]

T4 is the storage hormone - it is more or less inactive.

T3 is the active hormone that is needed by every single one of the thousands of cells in your body to function correctly.

The thyroid gland makes mostly T4, but a little T3. T4 is converted into T3 as the body needs it. That is the theory.

However, not everybody is able to convert T4 to T3 very effectively. And that is your problem. You are not converting very well. So, although your FT4 isn't too bad, your FT3 is much too low.

However, the pituitary senses there is plenty of T4, so lowers the TSH. Which is why you have a low TSH.

TSH rarely reflects thyroid status with any accuracy. And also varies all the time, and is affected by so many things that it really isn't a good test by which to dose.

Doctors are terrified of a low TSH and will tell you all sorts of horror stories about low TSH causing heart attacks and osteoporosis. None of which are true.

If your doctor starts telling you these stories, just ask him for proof. Some research or other. He won't be able to provide it because there is no such research!

[Dexter1 in reply to greygoose]

But if I increased the Levo wouldn't that decrease the tsh even further? Or doesn't that matter?

[greygoose in reply to Dexter1]

It would. And it doesn't.

But an increase in Levo isn't going to help you much because your body can't use it.

You aren't converting the Levo (T4) into T3, so it's just sloshing around in the blood causing problems.

However, your doctor obviously isn't going to understand that. He doesn't know anything about thyroid. So, you need to ask the endo when you see him.

[Dexter1 in reply to greygoose]

Just went to pharmacy and dr indeed decreases from 112 to 100mcg. I didn't pick it up. Wondering why I felt much better though when he decreased from 125to 112 couple weeks ago?

[greygoose in reply to Dexter1]

But for how long did you feel better? If you stopped taking it altogether you would probably feel better for a short while. But it wouldn't last.

You probably felt better because there was less unconverted T4 in your blood causing symptoms. But that won't help your hypo because the FT3 is still too low. You will continue to be hypo until the FT3 rises.

[Dexter1 in reply to greygoose]

Have an appoint with endo tomorrow. Tried to talk to nurse about my concern with his decreasing my Levo but she was no help. I'll justly see what the endo says.

Thanks!

[greygoose in reply to Dexter1]

No, I wouldn't expect the nurse to be any help. I expect she knows less than he does.

I'll keep my fingers crossed that the endo, at least, knows something about thyroid!

[Dexter1 in reply to greygoose]

I told the nurse that if he decreases the dose it would in turn decrease the t3 and she said it was actually the reverse of that. He's probably thinking about normalizing the tsh only which is what the literature said most gp's do.

[greygoose in reply to Dexter1]

Well, that just goes to show how much the nurse knows about thyroid!!! How on earth does she think decreasing the T4 would increase the T3? That woman is dangerous!

Yes, I realise he's only looking at the TSH, and wants it 'in range'. He probably has no idea what T3 is. He's dangerous, too!

[Dexter1 in reply to greygoose]

In my reading it appears I fall into the sub clinical hyperthyroidism category, though those articles focus on low tsh and normal t4 and don't consider t3 and antibodies at all. Treatment for shyper is controversial.

I'll keep reading.

[greygoose in reply to Dexter1]

No, you are not sub-clinical Hyper, nowhere near. Your TSH isn't low enough for that.

You are more like seconday hypothyroidism - with low TSH (and by that I mean Under-range, not suppressed) and low FT3.

You also have a conversion problem.

You are nowhere near hyper because that would be high FT3.

A low TSH on its own does not make anyone hyper. Absolutely not.

If these people continue to treat you as hyper, they are going to make you very, very ill.

What you need is some T3 added to your Levo.

[Dexter1 in reply to greygoose]

Got the info from this article:

The definition of subclinical hyperthyroidism (SHyper) is based on the presence of normal serum thyroid hormone concentrations (both T4 and T3 or free T4 [FT4] and T3 [FT3]) and low undetectable serum thyroid-stimulating hormone (TSH) levels.[1] Persistent SHyper should be diagnosed after excluding drugs, nonthyroidal illness, or other factors that could be responsible for transient TSH alterations.[1,2]

Although total and free thyroid hormone levels are within the normal values in patients with subclinical hyperthyroidism, they may be at the upper limit of their reference range. In fact, serum FT4 levels are usually at the upper limit of the normal range in the exogenous form of SHyper caused by an intentional TSH suppression during levothyroxine therapy.[1,3,4] On the contrary, serum FT3 levels are usually at the upper limit of the normal range in the endogenous spontaneous cause of SHyper.[5,6].

[greygoose in reply to Dexter1]

Do you have a link for that, so that I can read the rest, please, and see who wrote it?

OK, I take the point made there. Only problem is that your FT3 is nowhere near the top of the range. It's right down at the bottom. Therefore, you are not Hyper in any shape or form.

Also, your TSH is far from being undetectable. It is 0.243. Undetectable is < 0.01. Do you see the difference?

Hyper = TSH < 0.01; FT4 > 1.6; FT3 > 4.2

SHyper = TSH < 0.01; FT4 > 1.5; FT3 > 4.1

You = TSH 0.243; FT4 1.4; FT3 2.7

So, how are you hyper - or even SHyper?

Your FT4 is up the topish and your FT3 is down the bottom because you cannot convert T4 to T3 effectively.

So, the T4 is slopping around in your blood Stream, unconverted.

Unconverted T4 does not make you hyper.

High T3 makes you hyper.

In any case, the text you quoted there is talking about people who are not on thyroid hormone replacement.

Once you are taking Levo or whatever, the rules change.

A low TSH due to taking thyroid hormone replacement is not, in any way shape, or form, hyper.

The nurse and the doctor you are seeing, are so ignorant they want locking up!

[shaws Administrator in reply to Dexter1]

On reading your past post I realise you were prescribed double the dose of levothyroxine which gave you hyperactive symptoms. It must be a horrible experience.

Your doctor reduced your dose by half but it will take a couple of weeks for you to feel an improvement.

The symptoms you're having now can also happen when first on levothyroxine till you get accustomed to it.

If you can get a print-out of your last blood test results with the ranges and put them on a new question it will enable some members to respond if they've had a similar experience to you.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"