Best to wait until he comes back, then. Nothing is going to happen over-night, so you're not in any immediate danger. Keeping the TSH suppressed is so that any remaining thyroid tissue won't regrow with the stimulation, and the cancer with it. But, that regrowth, if it happens, would be very, very slow. And, with such a low TSH, probably wouldn't happen at all.
Yeah i think sometimes I need to remind myself that thyroid cancer is slow growing. I just panic I think because I had a delay with RAI due to Covid and I think since then I have always worried about delaying treatment.
Presumably your endo/surgeon instructed for TSH to be suppressed when you had your thyroid removed? Is this in your discharge notes/letter to GP? Maybe check this out, maybe contact your endo/surgeon?
Well I expect that will only be a couple of weeks. Speak to his secretary, explain the position and ask that he looks into this urgently on his return.
As Helvella says, did your GP get a letter after your op? If so it will be on your record somewhere. I have found that letters from consultants do get scanned/filed but GPs tend to forget about them. It's happened with a letter from my lung consultant, I know they have a copy but if I get a lung infection they don't follow his instructions on how to treat it so I would need to remind them about the letter and exactly what they should give me.
If you ring your GP surgery the receptionist should be able to look back to see if she can locate any letter. Or if you had a letter then you can show this to the GP.
Did you receive anything, such as a letter, from your cancer treatment people saying your TSH needed to be suppressed? Or did your GP get one?
If you do not have one, contact your GP/surgery to get copies of letters around that time. Even contact the cancer people to ask them.
In my book, your GP appears almost wilfully dumb. 0.43 can in no way be regarded as suppressed. Therefore, either your GP is missing the need to suppress TSH, or is ignorant of what it actually means, or has decided it is no longer required.
I don't think I received a letter. My GP is refusing to do another thyroid test because this test was done within the last 3 months so they can't do another.
I have told her I feel unwell but she just tells me its not my thyroid. They only tested tsh, didn't test t3 or t4.
I will call them to find out.I keep telling her I need to be suppressed but she just keeps telling me that I am in range, to which I tell her I shouldn't be in range and we just go round in circles.
I feel terrible too but she still won't test thyroid levels, she says I feel terrible because my vitamin b9 levels are low and its not my thyroid causing the problem.
GPs are taught TSH being is range is the goal. If TSH Is in range so are thyroid hormones (they believe) although once the thyroid is not working or removed the TSH isn’t the reliable measure - it’s FT4 & FT3 which is important.
Do you have an endocrinologist or oncologist? they usually advise if the TSH should be suppressed & this should be on your medical record. eg in a letter or discharge information.
Explain to your GP the TSH (thyroid stimulating hormone) is kept low to stop thyroid cells being stimulated and should any residual thyroid cells be stimulated that cancer cells could spread.
They may argue with surgery & RAI thats highly unlikely so unnecessary to keep TSH suppressed.
There are varying opinions on TSH suppression after treatment.
Total suppression is <0.01. but under range TSH is not same as suppressed. So from 0.22 to 0.43 is not a great increase (both below range?) and can be explained by testing at different times of day.
Testing should ideally be earning morning, fasting overnight (lots of water) delay levo until after draw. Avoid biotin week before as can skew results. This shows highest TSH lowest FT4 and ensures consistent results.
The FT4 is usually kept in upper part of range to ensure TSH low & most feel well & adequately replace when this level is reached.
Do you have hypothyroid symptoms?
Was FT4 & FT3 actually tested? They are not always. Always obtain a print out of results to see what tested and results- or online access to record.
FT4 and FT3 were not tested. I have hypo symptoms but my folate is low so the symptoms are so similar they say its the low folate making me feel this way. I feel so exhausted when I do something, lightheaded and dizzy. Ive been off work for the past two weeks because of my symptoms and they don't seem to be improving.
FT4 & FT3 need to be tested. Many are refused this and therefore arrange private testing. The kit is ordered online, fingerprick sample taken at home (or extra fee for private draw) - posted sample and results available quite quickly online.
There are a number of companies which offer options from basic thyroid function to packs with antibody tests and nutrient tests.
When it's possible for you to do so, the cheapest basic thyroid function test - TSh, FT4 and FT3, is with Monitor My Health (MMH) and it costs £26.10 with code here:
MMH is an NHS lab at Exeter Hospital who offer this test to the general public. As it is an NHS lab the results are more likely to be accepted by a GP than if tested with one of the other private labs.
When I had my 6 weeks follow up after my TT in 2015 my professor surgeon handed me a letter, which states that my TSH should always be suppressed. Perhaps you could get a letter from the hospital with the same information. I still visit the GP and collect my prescription but never use it. I do a once a year private blood test and take NDT which I source myself. This keeps the GP happy and me too.
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