Morning blood test Graves’ disease

[Yoga54]

Good morning, can anyone advise me please, I have my 3 monthly appointment with my endocrinologist on Tuesday morning, they will need to do blood tests and I was wondering whether to take my medication the same times as I usually do. I have Graves’ disease and take 100 micrograms of levothyroxine every morning around 6.30am and 40 micrograms of carbimazole every evening around 7.30pm. I also take a selenium supplement every day. I haven’t felt as well the past few months, I seem to have lost my spark and feel like I’ve slowed down a bit, I was thinking maybe I’m now going to need the dosage adjusted, I have been on the same medication for the last 9 months, just wondering if anyone out there can help, thank you.

[elderflower2016]

I personally would take the medication at the same time as that's the baseline that would be used to determine the new dose.

[Yoga54 in reply to elderflower2016]

thank you for the quick reply, I will do that.

[helvella Administrator Thyroid UK]

Assuming I have understood...

If you have a blood draw within hours of taking levothyroxine, you will be in the peak caused by that dose.

(The height of the peak depends on your digestion, your ability to absorb levothyroxine, and might well vary from one make to another!)

I would not take the levothyroxine before the blood draw. (Usually for blood draws, I make sure I can take any due dose straight after.)

I hope your selenium dose is modest - like 100 micrograms? Long-term, many stop taking selenium for something like one month in six. Excess selenium is not good for you and pausing can let levels settle down.

[Yoga54 in reply to helvella]

Thank you for the reply, that’s interesting, I was advised by the consultant in December to take Selenium 200 which I’m taking 1 a day, I haven’t felt as well the last 3 months so now wondering if it’s worth taking at all. I only asked about it because I wanted to try and look after my hair and eyes as I haven’t got thyroid eye disease and my hair hasn’t gone thin, thankfully.

[helvella Administrator Thyroid UK in reply to Yoga54]

I'd drop to 100 - or 200 selenium on alternate days.

If you had been low, then you should have largely recovered that and so need a maintenance level to make sure it doesn't drop in the longer term.

(Ideally you'd be tested but that is rare on NHS and expensive privately.)

[elderflower2016 in reply to helvella]

yes it is true that she might be in the peak of the levothyroxine dose, but she would have also taken the 40 mg of carbimazole the night before which would have lowered her levels down. that's why I was suggesting she does not change anything.

[helvella Administrator Thyroid UK in reply to elderflower2016]

But carbimazole acts on the thyroid's production and release of thyroid hormone. Not what we take orally.

The carbimazole appears to be being used as a block and replace agent. So we'd expect little or no thyroid hormone to come from the thyroid gland - almost all from the tablets.

[pennyannie]

Hello Yoga 54 :

Just looking back at previous post - has the bloating ceased which you put down to taking the Carbimazole - have you read the PIL - Patient Information Leaflet for this AT drug ?

There is an alternative - Propylthiouracil - PTU for short :

Do you have any issues with your eyes , dry, watery, light sensitive, sore ?

Do you have your original TSH, T3 and T4 readings from when first diagnosed and do you have the medical evidence of positive and over range Graves antibodies - generally expressed as either a TR ab - a blocking antibody or TSI - a stimulating antibody reading/range.

The most recent research we have is suggesting the longer one stays on the AT medication the better the long term outcome for the patient.:-

pubmed.ncbi.nlm.nih.gov/338...

All the AT drug does is put you into a holding position ( much like a plane waiting to land ) by blocking your own natural thyroid hormone production while we wait for your immune system response to calm down and hopefully reset itself.

Some patients are offered full suppression of their thyroid function and T4 - Levothyroxine - at a measured dose introduced so the patient does not fall too far through the T3 and T4 ranges and suffer the equally debilitating symptoms of hypothyroidism.

Other patients are prescribed no T4 and less AT drug and this is titrated on a regular basis with blood test every 6-8 weeks and the AT drug reduced/ increased according to blood test results.

When Graves is raging - you may have either TRAb or TSI antibodies controlling your hormone production - while these 2 antibodies are juxtaposition fighting for control and which at any one time will be driving up or down your hormone levels.

You may well feel you are on a bit of a roller coaster of symptoms and there will be stages where these 2 extremes, blocking/stimulating - negative themselves - burning themselves out - with you feeling relatively normal but obviously a bit worse for wear.

When metabolism is running too fast as in hyperthyroid or too slow as in hypothyroid - the body struggles to extract essential key nutrients through food no matter how well and clan you eat - so it makes sense to also get your ferritin, folate, B12 and vitamin D run as is these core strength vitamins and minerals are not maintained at optimal levels you health issues maybe further compromised.

Quite what has happened to trigger your immune system response to turn and attack your body and your thyroid is the 64 million $ question.

Graves is said to be a stress and anxiety driven auto immune disease and currently there is no cure and it's basically down to the individual to become their own best advocate.

You might like to read around Graves and I believe the most well rounded of all the websites I visited is that of Elaine Moore - a lady who also has Graves and went through RAI thyroid ablation only to find her health much worse - and then as a medical technologist in the States - spent her time researching and writing on this poorly understood and badly treated AI disease.

elaine-moore.com

I appreciate this doesn't answer your question - but thought I'd just offer some support.

[asiatic]

I have been on B&R about 7 years. It doesn't seem to affect my results when I take my meds but we are all different. For me the important measurement is fT3. If it goes under half way I start to experience hypo symptoms. You might be tending towards hypo now which often happens and you are ready for a dose adjustment.

[Yoga54 in reply to asiatic]

oh thank you for replying, that’s interesting, I will be on block and replace for another 6 months at least, I wasn’t aware you could be on it for a long time, to be honest I’m happy taking it as my thyroid itself is healthy,

[asiatic in reply to Yoga54]

I do well on it too. On a low dose now - 5mg. Carb. 100mcg. Levo. My antibodies were still high after the recommended 18 months meaning I would probably relapse if meds were stopped. The latest scientific evidence suggests the longer you stay on meds the higher chance of a lasting remission.