I had a total thyroidectomy 18 months ago, have... - Thyroid UK

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I had a total thyroidectomy 18 months ago, have been great til now. Feeling cold, tearful.off balance etc, is this hypothyroidism?

Orangelady1 profile image
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Orangelady1
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13 Replies
shaws profile image
shawsAdministrator

Are you on medication? The reason I ask is I have just looked at this excerpt in an article by Dr Toft ex of the BTA:-

7 How low should we aim to suppress TSH levels following thyroid carcinoma? And are

these patients at increased risk of bone loss?

The treatment for papillary and follicular carcinoma of thyroid is usually total thyroidectomy followed by ablative iodine-131 and long-term treatment with levothyroxine in a dose high enough to suppress serum TSH concentrations.

Higher doses of levothyroxine are used – compared with those in patients with spontaneous primary hypothyroidism – because the growth of differentiated thyroid carcinoma is TSH-dependent.

In the past it has been customary to make sure that serum TSH concentrations are undetectable by using doses of levothyroxine of 125-200µg or more daily, depending upon the patient’s weight.

There is no good evidence that a suppressed serum TSH concentration – in the presence of an unequivocally normal serum total tri-iodothyronine – is a risk factor for atrial fibrillation or osteoporosis.

But the clinical consensus is that serum TSH concentrations in such patients should be low but detectable at 0.1-0.2mU/l.

Orangelady1 profile image
Orangelady1 in reply toshaws

On 100 mcg levothyroxin daily, I have been dropped every 4 months and this is the lowest I have been on, thank you for your reply.

RedApple profile image
RedAppleAdministrator in reply toOrangelady1

What dose were you on before it was reduced to 100mcg? It does sound very much as if you are now under-medicated. Do you have details of the test results that triggered the dose reduction? If so, please post them here so that we have a clearer picture of the situation.

Orangelady1 profile image
Orangelady1 in reply toRedApple

I was on 125, not a big difference I know, but was started on 200, then continually dropping it down thank you for lustening

RedApple profile image
RedAppleAdministrator in reply toOrangelady1

Actually, 25mcg is a big difference. That decrease from 125 to 100 is most definitely enough to make someone very ill.

If you can contact your surgery to get the exact blood test results that have triggered all these decreases, we can take a look and offer opinions on whether or not they are justifiable in our 'collective' experience.

I would also most certainly go back to your GP and explain how much this has affected you and request that the dose is put back up to 125mcg (or whatever dose you felt right on!).

Orangelady1 profile image
Orangelady1 in reply toRedApple

Thanks again, have appointment in morning, but, to be honest, I don't think my GP s seemed clued up about any of this.will let you know what happens.

helvella profile image
helvellaAdministrator

If you follow this link:

dl.dropboxusercontent.com/u...

You will get a spreadsheet - into which you can enter numbers to estimate how much levothyroxine you might need. It is ONLY an estimate - based on your weight, height, etc.

Rod

Orangelady1 profile image
Orangelady1 in reply tohelvella

Thank you :-)

helvella profile image
helvellaAdministrator in reply toOrangelady1

Hope it makes sense to you.

Jackie profile image
Jackie

hHi, yes, quite probable as some thyroid always left, so common. Normally thyroid should be treated the same way as if you never had the OP, treatment on how you are now ,not what went before.. Also get your glucose tested, my diabetes makes me far colder than the Hashimotos and all the other conditions too There are a lot of common symptoms for both. As both autoimmune and hormonal so have the other important blood tests, really more important for you as post OP..

Best wishes,

Jackie

If you want to reply to some ones specific post, click on "reply to this" under their post.

Orangelady1 profile image
Orangelady1 in reply toJackie

Many thanks jackie

spring13 profile image
spring13

Don't forget you could have a cold/viral infection like so many people at the moment, your symptoms fit, and it may be nothing to do with your thyroid. If I ever get your symptoms I decide to wait 3 weeks and do something about it if they haven't gone away, unsurprisingly they always do. there is a danger at blaming everything on thyroid function.

Orangelady1 profile image
Orangelady1 in reply tospring13

It has been going on about 3 weeks, back at docs in morning, would just love to feel normal again. Many thanks for reply

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