Does anyone know what the preferred TSH lab value is post Thyroidectomy for Thyroid Cancer? My doctor said TSH is too low at .03

[thevoice]

[Jackie]

Hi First do not panic.It is perfectly possible for many unknown reasons to have very low TSH, mine has always been unmeasurable. I can be the pituitary gland, damaged in surgery, or other things. It may be nothing. You need the test for pituitary, mine was ages ago but pretty sure it involved a 24 hours urine test. You need T4 and Free T3 tested too, irrespective of surgery. A little thyroid is always left and should be treated exactly the same as if you did not have an op. My Ft3 was so low, below range. Many years ago when I started treatment,no T3 then, armour, when T3 came out I had that + armour I have quite bad Hashimoto with all the frills!.The GP will not treat you, anyway you should be seeing a very good endo who will treat you,as needed. Find one first, then ask for a referral. You need one, not obsessed with bloods, most good consultants like the whole picture and are not obsessed with bloods.I hope that helps.

Jackie

not sure if you know but to reply to a specific post, click on" Reply to this" under their post or we do not usually know.

[Glynisrose]

Your doctor ought to know that when the thyroid has been removed the TSH is MEANT to be supressed!! Why would you need Thyroid Stimulating Hormone if you have no thyroid? Most doctors worth their salt know this.

[thevoice in reply to Glynisrose]

Right and he does, but the supression is too low, beneath the normal low range, he thinks it is over treated

[RedApple Administrator in reply to thevoice]

As I understand it, the 'normal' range is based on (and for) people with a thyroid. If there is no thyroid to stimulate, then in the case of thyroid cancer there should be no thyroid stimulating hormone either. Hence the suppression should be total and not simply at the bottom of the range. However I'm no expert! You could try contacting the BTF. I believe they have a telephone support person who is knowledgeable about thyroid cancer.

btf-thyroid.org/index.php/r...

[thevoice in reply to RedApple]

Thank you! RedApple

[marram in reply to thevoice]

I agree with other answers. You must have your TSH so low that it is undetectable. This is the standard after a total for cancer. It is absolutely vital, because TSH is a stimulant for recurrence. If you can. buy Dr Toft's book, 'Understanding Thyroid Disorders' it has a section about thyroid cancer, and on page 79 this is what he says:

"Doctors believe that the rate of growth of papillary and follicular cancers of the thyroid may be increased by the hormone TSH. An important part of the treatment, therefore, is to make sure that the level of TSH in your blood becomes undetectable."

Please note the word 'undetectable'. Never mind 'low'. Undetectable means that they cannot measure it, they should not be able to come up with a figure at all! This is vitally important for your future.

If you wish to convince your doctor, you can buy this book on Amazon for less than £5. I personally think £5 is a very good investment if it helps you to avoid a recurrence of your thyroid cancer.

amazon.co.uk/Thyroid-Disord...

If you want it on Kindle it's even cheaper, but hard to show it to the doctor!

[thevoice in reply to marram]

thank you Marram!

[marram in reply to thevoice]

We're here to help each other. XX

[capricorn in reply to thevoice]

Hi I had my TT due to cancer, back in 2011 and have just had my 6 monthly check up with the Oncology Consultant who specialises in the thyroid. My results are as follows:

TSH is 0.01 (0.3 - 4.2)

T3 is 6.7 (3.1 - 6.8)

T4 is 30 (12 - 22)

He is aware of the T3 and T4 being slightly high but as I am feeling pretty good, he is happy to leave my dose at 150mcg per day, but has said if my next tests in 6mths, show an increase in my T3 and/or T4 , then I'm to reduce my levo slightly. However my GP has other ideas and ,wants to interfere all the time but I just ignore him and do what the consultant says as he is far more knowledgeable than my GP whom I have lost all trust in.

If you are still under the care of the hospital, which I presume you are, then I would just explain to your GP that you are following the hospitals guidance. x

[thevoice in reply to capricorn]

Capricorn, thank you for sharing. I do not understand the role of T3 and T4, can you help me? also does your doc follow your TG?

[poing]

TSH is supposed to be completely suppressed for thyroid cancer patients i.e. below the detectable limit... I believe that's because TSH can stimulate the growth of thyroid tissue and that's the last thing you want if you've had thyroid cancer! To find out whether you're over-treated or not, they would need to measure T4 and maybe T3 as well. The risk of osteoporosis is much less of a concern than the risk of the cancer returning. Your doctor needs a little more educating there!

dundee.ac.uk/medther/tayend...

[shaws Administrator]

This is from Dr Toft ex of the British Thyroid Association. Louise isn't back till Monday and if you need a copy of this article for your GP, email [e-mail]:-

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.

[thevoice]

Thank you! This was very informative and helpful with my concerns, I now understand why my endocrine doc didn't panic when he got the urgent fax about this. I really appreciate this site and everyones knowledge and support

[vajra]

Hi TV. Here's a link to a US thyroid cancer support site listing one protocol for suppression: thyca.org/tsh-suppression.htm

My own experience after a thyroidectomy for a thyroid cancer has been that doctors seem to take a highly relaxed view of suppression. It's certainly not been tightly managed - if at all.

This might just be lack of care, but there's been a paper or two in recent years that suggests it's not all that effective in reducing the incidence of problems anyway.

It's all a bit up in the air anyway i suspect. In that if like in myself T4 alone drives down TSH but leaves one hypothyroid (as in the case of the maybe 30%+ of those of us that don't use T4 well) then suppression may not (or may - i don't know for sure) be doing much good in such cases anyway.

The bottom line for me was that i felt very unwell when heavily suppressed on T4 - i tolerate a certain amount. This isn't advice, but my personal decision after doing some reading was that whatever else i wasn't going to pursue suppression to the point of feeling unwell.

What i do know is that eight years later my thyroglobulin is still testing zero and i'm doing fine.

ian

[gingerlucy]

0.3 to 3.0

[gingerlucy]

Mine is 0.3 right now and that is too low for me. Too tired all the time, can't sleep, knees hurting. Going to see doctor this Thursday to see if she will change it. I would like it be at least 1.0 and at that level I would feel great.

[pennpointdesign]

There is new concern now for keeping levels too low and causing osteoporosis later in life. Of course we want to make sure we do not have cancer reoccurrence, but nor do we want secondary issue if they can be prevented. My blood work was just checked this week and my TSH level is at 0.116 uIU/mL. He said this is pretty low, but it is supposed to be suppressed. He still informed me that he felt it was too low for me.

My vitamin D levels are very low and recommend I take 1000 D3 daily in the meantime. He is going to check again in six months.

That being said, it also has to do if you are high or low risk. Obviously if you are higher risk your doc will want to keep you at a more suppressed level. I was initially diagnosed with stage two follicular carcinoma and they also found tumors with papillary as well.

So, I think he is aware of this and is weighing the options and keeping me best informed.

We are all different and keeping a close connection with your doctor and doing your homework, is key. I love my endo. (he is pretty awesome and worries for me so I can sleep!), but he doesn't know everything! And don't assume they know either. Ask questions like crazy until you feel you are heard and are getting the answers you need.