low TSH

[vsloan1]

I have autoimmune thyroid disease diagnosed 23yrs ago and have been on the hypothyroid treadmill since. Yet again GP wants to reduce my levothyroxine and liothyronine as my TSH is 0.12.

this happens regularly and my TSH never changes. Many years ago an ultrasound of my thyroid showed it was “shrivelled up “ as I was told at the time.

has anyone had similar experience I’m so sick of having meds reduced and increasing symptoms.

also had B12 injections stopped as now in range according to GP despite anti parietal cell antibodies and neurological symptoms with endoscopy showing gastritis with ongoing symptoms and weight loss not relieved by ppi.

thanks in advance for any advice as like many I am so worn down by this ongoing battle :((

[greygoose]

Hi vsloan1, welcome to the forum.

Is the TSH all that your doctor tests? Time to start putting your foot down, I think, and refusing to reduce your dose based solely on a TSH result. The stupid man has not yet twigged that if you're taking T3 your TSH is going to be low, end of. And he should not be dosing by the TSH anyway, because it is a very poor indicator of thyroid status for many reasons.

Remind him that he is not there to dictate to you, he is there to advise you. But there is no law that says you have to do as he advises. However, when you discuss it with him, you need to know what you're talking about - at least one of you should! - so you need to mug up on the basics of thyroid function and how to treat hypo. In the meantime, just say 'no'.

But he does sound particularly ignorant. Stopping your B12 injections just because you B12 is now in-range is crazy. Does he not realise that the only reason it is now in-range is because of the injections? And if you stop them it will just drop again? Really makes you wonder, sometimes, what these people have between the ears! Ask for a second opinion on that.

[Sparklingsunshine in reply to greygoose]

This is not the first time I have heard of this with B12 jabs, doctors foolishly concluding that because B12 is high ( well doh of course it is, thats what jabs do) so the patient no longer needs them. I'm guessing its either stupidity, NHS rationing or both. Its becoming more common and worrying.

[vsloan1 in reply to greygoose]

Thank you I have been on forum and gleaned loads of information from you all over the years. I follow all the advice given re procedures for taking meds, prior to blood tests etc.

I also research lots myself. I am a registered nurse and when I go armed with research facts, nice guidelines etc the doctors always get defensive and behave as if they think I’m being difficult with comments like “ oh you’re a typical nurse reading too much into everything “!!!

I will post latest results a bit later to get some thoughts and feedback.

I’m currently so deflated by the years of battling especially as additional issues keep creeping in and are all dismissed as minor and not problematic by the majority of doctors I deal with.

[greygoose in reply to vsloan1]

Well, it's something the majority of us have to deal with. And you're not there as a nurse, you're there as a patient. So, tell them to leave professional differences in the waiting-room! They are defensive because, I think, deep down they know they are out of their depth. They know next to nothing about thyroid. But like to pretend they know it all. But there's no way round that except standing up for yourself and refusing actions you know are going to be detrimental to your health. Your treatment should be the result of a joint decision, you have your word to say on the subject.

[pennyannie]

Hello Vsloan and welcome to the forum :

The yearly thyroid function test undertaken in primary care is generally just a TSH reading with an occassional T4 - and this is not enough information to help keep patients well.

Equally your comment on the B12 injections sums up where we find ourselves in a system that apparently is intent on not keeping us at optimal health.

I'm afraid many forum members have been forced into arranging their own thyroid blood tests and initially we need to see a TSH + Free T3 + Free T4 + antibodies, inflammation and the stepping stones to optimal thyroid health - ferritin, folate, B12 and vitamin D.

If your doctor is unable to run these blood tests for you - if you go into Thyroid Uk - the charity who supports this patient to patient open forum - there is a whole section dedicated to Private Blood Companies who can and then when you have back the results and ranges - we talk you through what it all means and advise accordingly. thyroiduk.org

If taking Levothyroxine - do you take this on an empty stomach and wait around an hour before you eat or drink anything other than water.

If taking any supplements - stop anything containing biotin and any supplements the week before the fasting venous blood draw -

and you need an early morning appointment and need to fast overnight - just take in water -

and take your T4 AFTER the blood draw so we measure what your body is holding and not that just ingested.

Once with this information we can advise you what your next best steps are and support you throughout your journey back to better thyroid health and well being - and where we all start off - taking back some control and becoming our own best advocates.

I see you joined the forum some years ago - when I joined we had 15K members and now some years later we are tipping over 139 K - so you are in ' good company ' with many of us coming back on to give back to others on this amazing, sharing, supportive forum.

[Sparklingsunshine]

Could you see a different GP or change surgeries? This idiot of a doctor is going to make you unwell. Its bad enough when they reduce your Levo but taking away B12 jabs as well will be very bad for you. He's clearly clueless. Do you have any letters from the gastro clinic showing you need lifetime B12 jabs?

[vsloan1 in reply to Sparklingsunshine]

thank you for the reply. Yes he is clueless and accused me of using him as a scapegoat when I insisted he start my B12 jabs again.

No referral to gastro just sent for gastroscopy under surgical consultant. To cap it all I’m on lifelong apixaban due to unprovoked bilateral pulmonary embolism and was told to omit this the day of scope when it should have been 3 days to allow biopsies to be taken

Still got stomach pains and nausea and reduced appetite but now I have been diagnosed with gastritis just palmed off with ppi that I tried for 2 months with no relief before scope.

[Sparklingsunshine in reply to vsloan1]

I'd call his bluff and say you want referring to gastroenterologist before they stop B12 for a second opinion.

[helvella Administrator]

With respect your B12, I suggest you go across to the Pernicious Anaemia Society forum:

healthunlocked.com/pasoc

I just had a glass of water. Right-ho! Stop drinking now. Forever.

I just had a meal. Right-ho! Stop eating now. Forever.

[Shredder29]

It usually depends on how I feel. I'm lucky that my GP and endocrinologist listen to me and how i'm feeling

[Clairewalker751]

My TSH is always suppressed GP is not aware that intake a small amount of T3 however my NHS blood test always test T3 and T4 also, I've assumed this is because TSH is suppressed as the blood form only asks for a TSH test. I spoke with my GP about something unrelated a couple of years ago we discussed my thyroid he stated that because my T4 and T3 are well within the normal range he hasn't reduced my dose based on TSH result, he said it's really refreshing to speak to someone who's actually done research into the condition and understands it, he's semi retired not all GPs are the same but as everyone else has said just a TSH result is next to useless! And my GP knows this.