Is maintenance carbimozle dose for these blood results right? (Graves) Would love to hear your experience with adjusting dose.

[Bevvvers]

Hi first time poster!

I was diagonsed with Graves in Feb 2020 after experiencing hyper symptoms (heart palpitations, anxiety,shaking of hands) and was put on an initial dose of 30mg Carbimozle which has since been reduded to a maintenance dose of 15mg.

I was feeling great about 6 weeks after initially starting carbimozle and resumed light exercise (5km runs, yoga). However at 4 months, I woke up suddenly fatigued again with a simple walk winding me out. Also have trouble sleeping and getting up to pee a lot. This coincided with a very stressful event at work if it feeds into it.

My results from initial diagnosis compared to the most recent one is below. Wondering if my levels are right and if I should get anything else checked? Can you be hypo while still in reference range?

(I had a full panel test done in Feb as well and all vitamins etc was normal)

TSH (ref Range: 0.35-4.94 uu/mL)

Initial:<0.0lL

Recent: 0.52

Free t4 (REF: 9-19 PMOL/l)

Initial:43

Recent: 10

Free t3 (REF: 2.9-4.9 pmol/L)

Initial:16.2

Recent: 3.2

TRAb (TSI) (REF: IU/L <0.55)

6.03 H | 6.80

Getting checked every 4 weeks! Can't really exercise at the moment and noticing uptick in irritability.

[Lalatoot]

If you look at your recent results you will see that they are towards the bottom of the ranges. This means that your levels are becoming too low. Add your symptoms to that and they are too low for you.

You are needing to lower your carbi dose.

We are all different but once my levels were in range my maintenance dose was 5mg daily.

[Bevvvers in reply to Lalatoot]

That’s good to know! GP wasn’t very clear about how titration goes so good to get a range of everyone’s maintence dose

[Lullabied]

Hi, I to was diagnosed recently with all the symptoms you’ve mentioned above. I do think stress has a lot to do with it, I’m working full time and doing all the home schooling, when I found out that my child didn’t get a space to go back to school that’s when my hyperthyroidism came to ahead. The doctor diagnosed overnight, they’ve been super. I’ve had 3 lots of blood tests two weeks apart. I’m still learning about what they mean. When I was diagnosed my T3 was 30 and after 4 weeks on 20mg of carbimazole it’s gone down to 9. I had the antibody test and it came up as Graves’ disease. I’m not exercising a lot now, just a walk everyday. I’ve had my call with the endo specialist and they are keeping me on the same dosage for now but my doctor is a little concerned that they may turn me hypo so they are keeping an eye on that. I’m waiting for an appointment with the eye specialist as I’m having problems with one of my eyes which is not uncommon with the Graves’ disease. I do hope you feel better, sorry I can’t help with the question, we sound quite similar.

[Bevvvers in reply to Lullabied]

Oh no, yes it’s the worst but so great you got a diagnosis so quickly! Hopefully it’s less crazy in the house and you get to feel better soon

[pennyannie in reply to Lullabied]

Hey there Lullabied

Just to say, if you don't know of the Elaine Moore Graves Disease Foundation you might like to dip in ;

I found it the most well rounded all encompassing website on all things Graves and pays particular attention to the AI component of the disease which currently the medical mainstream do not know how to control or reduce.

Your thyroid is the victim in all this and not the cause - as the cause is your immune system attacking your body : and yes, Graves is said to be a stress and anxiety driven AI disease.

I'm with Graves, post RAI thyroid ablation in 2005 and became very unwell some 8 years later and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating as I was unable to acquire full thyroid hormone replacement on the NHS.

[asiatic]

It's good you are having bloods checked every 4 weeks. We often need many adjustments especially at the start. I would suggest you compare your thyroid blood levels with your symptoms to learn where your "sweetspot" lies within the range as yes you can be hypo or hyper within the range. We are all different. You want to avoid hypo as it can trigger Thyoid Eye Disease. Unfortunately symptoms can overlap. I find my resting pulse rate a good indicator.

[Valarian]

15mg is quite high for a maintenance dose, they will probably reduce this again with the ultimate aim of seeing whether you can do without it altogether.

Your thyroid results are quite low in the range, but right now, the main aim will be to keep thyroid levels in check in the hopes that your Graves’ won’t take off again. This may mean that your thyroid levels are a bit low from time to time (although ideally they should always be within range). Typically people with Graves’ are on carbimazole for 12-18 months, as this has been found to give the best chance of achieving remission.

The symptoms you mention could well have been hyper. Most of us with Graves’ have found that stress tends to make our symptoms worse. Your tests are only four weeks apart, so if you are still having symptoms at the time of the next test you can discuss them with your endo at that point. When deciding to reduce the dose, the endo will look at your thyroid levels over time in relation to the dose of medication - it isn’t quite as simple as chasing the numbers for every point test. They also need to consider your eye symptoms.

I wouldn’t mess with the dose without discussing it with the endo, but you should certainly push them to explain why they are/are not making any adjustments.