Up an down

[JoMax]

Hi. First time posting! Diagnosed with Graves May 2023. Blood results today from Endo are T4 23.7, TSH 0.01. So increasing Carbazole now to 10mg twice a day.. My bloods 8 weeks ago meant I could decrease the dose but now increasing again. Have others experienced this up and down during first year of treatment? Since my diagnosis(which I had because I was admitted to hospital) I've only ever had phone appointments but they said today next appointment would be in person. Made me worry a little. But I guess its good they are being so thorough right. So yeah just wondering about the up and down or maybe it really individual. Ideally I want to be med free as too high a dose I get so tired, gain weight and lack motivation. Thanks for reading.

[PurpleNails]

Welcome to forum,

Yes the up / down adjustment is quite common. I started on 20, then 10 then 15, then 10, then 5, after flipping between 10 for a while then 5 for for a while - I suggested 10 / 5 alternating days which worked well for over a year.

Over 5 years & still needing tweaks - Currently on 10mg. I have hyper nodule, not autoimmune graves’.

Getting your results and tracking what’s going on it a good way ensure you getting the right tweaks to medication. Doctors tend to be a bit blunt about it. If TSH high reduce carbimazole, if TSH low increase.

They don’t think I’m terms of fine tuning to patients optimal / symptom free. They’re simply looking at the right number with what doses are the norm.

Cats get liquid carbimazole adjusted to the ml, but us humans have to fit into larger units.

What are your results?

For full thyroid you need

TSH

FT4

FT3

TPO & TG antibodies

Positive TSI or TRab confirms Graves.

Important to test

Folate

Ferritin

B12

Vitamin D.

Gluten issues common with Graves, has this been tested?

Also consider posting on main thyroid uk forum.

[JoMax in reply to PurpleNails]

Thanks for your reply. Appreciated

[pennyannie]

Hello JoMax and welcome to the forum :

With Graves Disease you can have both blocking and stimulating antibodies vying for control of your thyroid at any given time - and it can be similar to a roller coaster ride without any of the fun.

Graves is an auto immune disease for which there is no cure, and something has triggered your immune system to turn and attack your body - rather than defend it - and why now - obviously the question you are asking yourself.

There is likely a genetic predisposition to Graves with possible someone a generation away from you with a thyroid health issue though no two peoples journey with Graves will be the same, stress and anxiety do tend to be common triggers for this poorly understood and badly treated AI disease.

All the Anti Thyroid does is try to offset the extremes of symptoms suffered and buys you time - much like a plane waiting to land and put into a holding position - while we wait for your immune system response to calm down, with hopefully your T3 and T4 back down in range without the need for any medication and this episode just a blip in your thyroid health journey.

Regular blood tests need to be undertaken - every 6-8 weeks - as your T3 and T4 start to fall and the AT drug titrated accordingly and it does take skill and experience to get the dose just right as blood tests tend to run behind symptoms being experienced.

Too low a level of T3 and T4 and you risk experiencing the equally disabling, and in some cases, worse symptoms of hypothyroidism - it can be a bit like being on a seesaw - and why it's very important to keep a list of symptoms to discuss and talk through with your consultant so the dose of the AT drug is adjusted up or down according to symptoms being endured - rather than just be a mathematical equation for the computer to solve.

When metabolism is running too fast as in hyper or too slow as in hypo - the body struggles to extract key nutrients through food and core strength vitamins and minerals - ferritin, folate, B12 and vitamin D can nose dive through the ranges compounding ill health further - so it will be wise to get these run as we can advise on optimal levels as some NHS ranges are too wide to even be sensible.

Do you have your original blood test at diagnosis showing your TSH Free T3 and Free T4 readings and ranges and can you please detail which antibody was found positive and over range - probably written as a TPO - TgAB - TR ab or a TSI or with wording saying something like TSH thyroid receptor and a number and range ?

Are your eyes dry, gritty, light sensitive, with pain - please ensure all drops are Preservative Free even those prescribed.

The NHS generally allocate around a 15-18 month window with an AT drug and if remission is not found then suggest definitive treatment and a thyroidectomy or RAI thyroid ablation.

We do now have some research you might like to read :

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

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

The most well rounded of all I read was that of Elaine Moore's first book - and now website -

elaine-moore.com

[JoMax in reply to pennyannie]

Thanks for all that. I don't have my Graves result but the endocrinologist assistant doc said it was one of the highest positives she seen at iver 50%.

My grandmother had Graves too and had her thyroid removed.

I'm in Ireland but think tje treatment time on meds is similar.

I have that book. Thank you.

I'm just changing doctor as my old one was so bad at explaining what was going on( or didnt know)

Hoping new one is better.