Advice on GP thyroid blood test

[Peanut31]

Hello

Ive been self medicating on NDT very successful with a small amount of levo, this was after an awful time just on levo.

My GP isn’t aware I self medicate and thinks I’m continuing with the levo dosage they gave me.

I’ve not had many blood tests with my GP and when the results come I remind them that as I have Hashimotos you can’t rely on the blood results, but how I feel. I’ve got away with this.

I can’t collect my prescription anymore now without a blood test.

Do I not bother and source Levo myself and forget the bloods with my GP, or do I go for my blood test knowing I’ll have to fight again, and speak to GP that just don’t know enough on thyroid conditions.

Best wishes

Peanut31

[radd]

Peanut31,

That depends how much Levo is worth to you and if bloods are worth having?

If you can scribble a few extra tests on the blood form (vits, iron, etc) 😆, I'd say stick with it coz it seems extraordinary they are going to blood test every time you need a prescription, and surely unsustainable in this day of GP budgets.

And then you'll be back to just getting your Levo with presumably the once a year battle over the blood results. Although even a once a year battle sounds one too many for me, but only you can decide that one. It can be scary on your own and a worry trying to source meds but you're halfway there anyway!

[tattybogle]

i'd let them test, if it was me......if you don't, they won't renew your prescription anyway and you'll have to find a way to buy your own, so what have you got to lose. ?

But more to the point, what will they put on your records if you just stop collecting prescriptions ?, It could be a problem if for any reason you need to get Levo from them again in the future... somebody on here has recently been refused after not collecting any for years, even though previously officially diagnosed, and are effectively being made to go through the whole diagnosis malarky again.

You don't say what your current blood levels are on your NDT/T4 dose , but it's possibly worth missing your NDT on the day before so that if they do measure fT4 it will hopefully be low enough that you can use a lower fT4 as evidence to 'ignore' a slightly under range TSH,... but i wouldn't miss any longer than that as it's possible your TSH is under range due to the T3 in NDT and there is no way of knowing how long you'd have to stop NDT for to get your TSH to come back into range. and if you feel well at the moment it's not really worth making yourself ill for. There's nothing you can do about TSH result unless you stopped NDT for a prolonged amount of time.

They are highly unlikely to test fT3.

You might be OK and get a prescription, or you might have to have a discussion and say you understand and accept the 'risks' of Low TSH before they continue your current prescription, or they might refuse and reduce your prescription dose, but if you're only taking a little of your current prescription that might not matter to you.

It's highly unlikely they will completely stop prescribing any at all.

And once they've had a blood test you might be able to get away with not having one again for a few years before the next time they insist on one.

Whether you tell them you now take NDT + Levo is up to you, but i would , if i felt so much better than on Levo alone.

If discussing the 'risks ' of Low TSH with GP you might find the following ammunition helpful :- If you look at the first reply to this: healthunlocked.com/thyroidu... post, (ignore the fact it say's 'more mature')

and click on the links within it , you will find discussions , and a link to evidence that convinced me that it doesn't really present a problem until TSH is below 0.04 and even then , it's all relative.

[Peanut31 in reply to tattybogle]

Hi

Many thanks for your advice

Best wishes

Peanut31

[pennyannie]

I advised my surgery, after being refused both NDT and T3 on the NHS, that I would self medicate but was happy to make myself available to the yearly thyroid blood test providing my T3 and T4 would be included.

I never received an acknowledgement and around 12 months later I noticed Levothyroxine was taken off my prescription list : I still get eye drops though restricted to one drop per eye per day which doesn't even touch the sides,

I guess it all depends how much you need your doctor : and free prescriptions :

I know I run slightly over range on NDT but feel confident that if I waited 24 hours for a NHS blood test my T3 would be in range : and I'd probably be told my T4 was too low and my TSH suppressed and seen as a mystery.

Maybe do the test, as if they run just a TSH if yours sits low suppressed, this should be picked up and a T4 run, and if yours is low as is mine, the T3 analysis might follow.

You will likely get to see the doctor who will see how much better you are and maybe learn something from you ?

I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.

I don't think my diagnosis is eradicated just because I don't have any thyroid hormone replacement on my prescription but I don't know and I 've not seen a doctor for around 4 years now, though have been " picked up " for Covid vaccinations, so I'm still in the system just for the single prescription of eye drops.

[serenfach]

When the GPs question my low TSH, I just tell them "its just the way MY body works - odd is'nt it?", and laugh! They usually cannot be bothered to argue if you seem happy!

[Miffie]

I recommend going for the blood test and getting the levo prescribed by the surgery. When I switched ( with the knowledge and acceptance of my named GP) to ndt only I obviously no longer collected my prescription for levo. All was good for about a year, sadly my GP retired and In June last year I had routine tests and a call from the GP that my fT4 was ‘dangerously high’, in fairness about 90% into range. She was quite insistent I reduce the dose. Private testing had both fT4 and fT3 at upper end of range and I was happy to drop a tiny bit . At the same time Thyroid S became unavailable and all I could source was bovine Thyro Gold which did not agree with me. Three months from being told to reduce dose in September 2020 I had more tests at the surgery. This time fT4 at rock bottom. The lab queried the huge drop and I explained the problem to the new GP and asked to go back on levo. This was refused. I was amazed as I have been on thyroid replacement for nearly sixty years. I was left to struggle for several months. I went back armed with private test showing well below reference range fT4 and fT3. She was delighted to see TSH had risen. I explained I needed thyroid hormones in order to function. She had arranged for bloods to be done on a different assay as I was taking some T3 so finally she did that testing but it came back done as routine and TSH only, it had risen again since the private test so she was even happier. Again I explained I like the rest of the population need some thyroid function and pointed out the bizarrely every increase in TSH for me leads to a drop in fT4 and fT3. This shown in previous tests albeit no fT4 done my NHS when TSH ‘in range’. However plenty of Monitor my Health and Medichecks showing this trend.

She finally agreed to levo being reinstated and an endo referral as she is quote ‘out of my depth ‘ unquote. The provision is that I take nothing else and she refuses to go over 100mcg a day until I have been seen by an endocrinologist. (Probably a year away).The 100mcg is based on my being unwell and under medicated on 150mcg prior to self sourcing and taking ndt only.

The moral of my tale is never let the levo script go away. No one wants to be where I have been since last summer. I started to go downhill in mid - late July and still feeling grim now. Testing due again soon for effectiveness of 100mcg levo.

I’d say tell the GP the truth that you top,up with a little ndt, call it a supplement if you like but don’t let your hypothyroidism appear to not need treatment. At any time we could find ourselves unable to source a product and at least having some NHS supply is better than none.

[Peanut31 in reply to Miffie]

Thank you for your advice.

I think I’ll go and have bloods done.

Best wishes

Peanut31