advice needed

[Katie1982ob]

can anyone tell me if I’m on the right meds I’m waiting to see my endo . I have very bad leg pain and it’s only like this when my thryoid is playing up . I’m new to all this . I’m currently on 10mg of Neomercazole, does these seem right for these results .

[pennyannie]

Hello Katie and welcome to the forum :

Neomercazole is an Anti Thyroid drug and generally prescribed when the patient is being treated for an overactive thyroid ?

What diagnosis have you had and can you please share your TSH, T3 and T4 results when diagnosed so we can compare those to these results and explain to you this phase of ill health.

Were any thyroid antibodies positive and over- range ?

These look like TPO - TgAB - TRab - TSI - readings / ranges - or maybe written as a

TSH -Thyroid Receptor antibody reading and cut off number ?

So you know your thyroid ' plays up ' - and caused by this leg pain - what has been done about this in the past - as this reads as though neither are new symptoms ?

Are you on any other drugs ?

This blood test shows your TSH low/suppressed with your T3 / T4 and TPO antibodies in range -

and imagine this very low TSH has prompted the prescribing of the AT drug ?

We need to know more to help you better understand what is going on :

[Katie1982ob in reply to pennyannie]

Thanks for the reply . I was diagnosed with Graves’ disease overactive thryoid in January . I was put on 40 mg of Neomercazole and after ten weeks it was reduced to 20 mg as my endo said I responded well to the medication . My leg pain went when all my bloods leveled out . Now by looking at my blood results does it look like I’m going hypo ? I don’t see my endo for another month . Does it look like I should be on less meds now or move to underactive medication ?

[Jaydee1507 Administrator in reply to Katie1982ob]

Your FT4 is quite low now and FT3 not high. Likely you need to reduce your dose of Neomercazole.

[pennyannie in reply to Katie1982ob]

Ok then -

Can you please share your initial T3 and T4 blood test results and ranges at diagnosis as and the antibodies found positive in your bloods when diagnosed as previously requested.

Graves is an Auto Immune Disease for which there is no cure and generally only gets diagnosed when your immune system starts attacking your thyroid and / or eyes.

There is generally a genetic predisposition with a family member maybe a generation away from you with a thyroid health, and Graves an be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - or seem to be completely out of the blue.

No two peoples journey with Graves is the same and why it is probably the poorly understood and badly treated AI disease that it is - but one common trigger is stress and anxiety.

All the AT drug does is ' buy you time ' while we wait for your immune system response to calm back down again and it does this by semi-blocking your own new daily thyroid hormone production, so slowly your initial T3/T4 readings should start to fall back down into the ranges with hopefully your symptoms relieved - which looks as though this has now happened -

both hyperthyroid and hypothyroid can occur when your T3/T4 are in the ranges - but not sitting where they need to be for you to feel well -

Your T3 is now 27% through its range with your T4 at 18% - so both are now low in the ranges and I think you could consider reducing the AT drug down to 5 mcg a day - and if you split your 10 mcg dose - it should be possible to chop the tablet again.

When metabolism is running too fast as in hyper or too slow as in hypo the body struggles to extract key nutrients through food no matter how well and clean you eat -

so suggest you ask your doctor to run your ferritin, folate, B12 and vitamin D and we can advise where these need to sit, as low levels, though in range, can compound your health issues further.

The NHS generally allocate a treatment window with an AT drug for around 15-18 months with the hope being your thyroid resets itself without the need for any drugs and this phase of ill health just a ' blip ' and tend to encourage more radical treatment such as RAI thyroid ablation or a thyroidectomy if remission isn't found within the time frame.

We do now have some research that may interest you :-

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

ncbi.nlm.nih.gov/pubmed/306...

The most rounded of all I researched - ( though some 8 years after I had RAI thyroid ablation for Graves ) is that of Elaine Moore - books and website -

elaine-moore.com

[Katie1982ob in reply to pennyannie]

I don’t have my blood results from January just the ones I had done last week . I forgot to mention above that they cut the Neomercazole to 10 mg in April . Do you still think I should only be taking 5mg a day ? I will request to get b12 and iron checked also .

I also have thryoid eye disease and I find it’s gone worse the last few weeks .

I just wish I never got this horrible disease .

[pennyannie in reply to Katie1982ob]

Yes - I'm sorry - I've been there also - but back in 2004/5 there was no information freely available and only started my research into my own health some 8 years after I had RAI thyroid ablation for Graves as I became much more ill :

Well, it's your choice - do you have the blood tests from when you say -

' your bloods levelled out and your leg pain went away ' -

your next endo appointment is around a month away - you can wait til then -

but presume your symptoms are worse, and why you contacted this forum :

Please ensure any eye drops, sprays or lotions or potions that you use to ease the discomfort are all Preservative Free - even those prescribed and your eyes can feel and look worse when your T3/T4 levels are too low :

There are ' heavier ointments ' for overnight use if you find discomfort then - use these last thing at night as your vision will become blurred.

Have you been seen by a specialist ophthalmologist ?

You might like to contact The Thyroid Eye Disease Charitable Trust tedct.org.uk as I believe they have outreach clinics throughout the country generally attached to major teaching hospitals where you can find both a specialist endo and ophthalmologist with an interest in Graves / TED and who work together to achieve the best treatment option for you.

You are legally entitled to copies of all your blood test results and a diagnosis detailing which antibodies were found positive and over range in your bloods.

[SlowDragon Administrator]

you also need vitamin D, folate, B12 and ferritin levels tested

Plus TSI or Trab antibodies for Graves’ disease