TSH at 0.02 is this too low?

[Suesews]

I have just had my annual bloods done by my Oncologist, he wants to reduce my Levo to 125mcg daily although my T4 and T3 are normal. I have got a copy of the Pulse report which says that TSH should be between 0.1 - 0.2 which is higher than mine!

If my T4 and T3 are normal then surely reducing my Levo will bring these down too? I have an appointment with my GP on Wednesday, I really don't want to reduce my dose what can I do? Do I have an argument to leave my dose alone? I had a total thyroidectomy 12 years ago with my Levo at 150mcg for most of this time, I am now on 150mcg for 4 days and 125mcg for 3 days. I suffer from fatigue/tiredness etc. and I am now taking all the relevant supplements thanks to advice received on this forum.

These are my blood results as written in my letter from the oncologist, he did not give me the reference ranges.

T4 21.5 (normal)

T3 5.1 (normal)

Thyroglobulin less than 1 (normal)

Thyroglobulin antibodies less than 20 (normal)

Any advice on this would be greatly appreciated.

Thank you

[SeasideSusie Remembering]

I thought that if you'd had thyroid cancer then TSH should be suppressed??? Hopefully someone more knowledgeable will come along and clarify.

[Nanaedake in reply to SeasideSusie]

Yes, should be suppressed.

[Nanaedake]

I would ask your GP to leave it alone and you'll book a GP visit if you start feeling unwell. Results can vary from month to month a little. If you are not on T3 and don't have a thyroid, reducing your meds might leave you T3 deficient. If your GP reduces then you've got grounds to object on the basis of your normal FT3. You can say that if he/she insists on reducing your meds you want retest in 6 weeks and if FT3 drops you want it reinstated. That will cost the surgery more money so he/she might leave it alone??

[Nanaedake]

Your GP should refer to the oncology team before he reduces your meds.

[Suesews in reply to Nanaedake]

it is the Oncology doc that wants to reduce my meds, but I don't want them reduced.

[Nanaedake in reply to Suesews]

Oooch, you may have a little battle there then. Could you ask him to test all your vitamin levels first because levothyroxine doesn't work well unless, vit D, B12, folate and ferritin are optimal. Tell him that you want them all tested before he reduces your meds to ensure the levothyroxine can be utilised effectively by your body.

I don't know which hospital you are under but you could read the information on the Butterfly thyroid cancer website because it's a well acknowledged site for patient information.

There are BTA guidelines for thyroid cancer and suppression therapy on the British Thyroid Association website. I don't know what the recent recommended target suppression is but it should say there. You may have difficulty if your TSH level is outside of the recommended level but you can fight for your Endo to look into your general health, do blood tests for vitamin and iron levels and so on.

[Nanaedake]

BTA guidelines page 50

onlinelibrary.wiley.com/doi...

"13 On physiological grounds it may be

desirable to avoid complete suppression of the serum TSH

below 001 mU/l on sensitive assays, though there is no evidence for or against this practice. Adverse effects from long-term TSH suppression include increased risk of atrial fibrillation, cardiovascular disease and death14–16 as well as osteoporosis."

[Suesews]

Thanks Nanaedake, I had all my vits D,12 and others tested about 4 weeks ago, they were all in range, albeit at the low end. My GP was not interested saying they were all ok even at the low end of the range. I gave my oncologist a copy of the results, he too was not interested and said I do not need an Endo. When I spoke about my tiredness/fatigue he advised me to make sure I had heavy curtains and perhaps have a hot drink before bedtime. Didn't know they were now giving advice on soft furnishings!!

I will take a look at the links you suggested, Thank you.

[SarahReins in reply to Suesews]

Hi there, I would request (politely demand) a referral to an Endocrinologist which your GP is obliged to honour. My oncologist is a sweet man but I have totally given up answering him truthfully!! He will say 'How are you?' , I will list the problems I'm facing and then he will say 'Your bloods are fine' and that will be the end of the consultation. He is not an expert in endocrinology. Now I spend up to an hour in the waiting room, go in, usual question to which I answer 'Fine' as quickly as possible to see how quickly I can be dismissed!! I find it amusing. The oncologist keeps an eye open (I hope) for any return of the cancer. He's not really bothered about HOW I am, just am I cancer free. The GP admits he knows very little about the thyroid so will listen to me but is not informative. The Endo (my second one as the first was upsetting and dismissive....why do these people go into medicine???) is prepared to discuss things but there is little time. Do your own research (because you're worth it!! 😁) and be confident in asking for what you need. First step, an Endocrinologist. Print out relevant parts of what you find so you can back up what you are saying (if that helps) and don't be dismissed and discouraged. Most medics do a wonderful job for which they are very wonderfully reimbursed, so go forth expecting your money's worth!! As I said...because you are worth it. X

[Suesews in reply to SarahReins]

Hi SarahReins, yes you are right. The oncologists don't really care about how you are they are only interested in you 'ticking their box'. Like you, mine checks to see if there is no more cancer and takes the bloods. Thank you for the encouragement, when you are feeling tired sometimes you just feel like giving up the fight!

How do you find an endo who knows about thyroid/problems and is willing to listen?

[Phoenix605 in reply to Suesews]

Your GP and oncologist are going to start spouting nonsense about osteoporosis and heart issues any time now. These are only a risk factor if the suppressed TSH is caused by excessive T4/T3. They are risk factors for HYPER not HYPO. Yours are both well in range, you are definately not hyper.

Try stating that you will not accept a dose drop unless they can produce the research to back up their claims, spouting generic guidelines is not good enough. You could also suggest they send you for a bone density scan and full heart work up if they are that worried. If they are worried about osteoporosis they could always prescribe a calcium supplement to counteract.

You could also request referal to an endocrinologist if they stick their toes in, the tricky part with this is most of them are diabetes specialists NOT thyroid specislists so are no more clued up than GPs. Thyroid UK have a list of thyroid friendly endos, there might be one in reasonable travelling distance (I know I would put up with a fairly long drive if the only way to get decent treatment) you could then ask for referal to the specific endo.

My latest results on my bio are not dissimilar, TSH is identical, but I have a good GP who listens and was persuaded to leave my dose alone !!