TSI rising on methimazole

[NDMama]

I haven't gotten my TS4 and TS3 back. But I've been on methimazole for 2.5 weeks. I feel like my TSI should be going down... i feel so defeated. Like I'll never get better. Anyone deal with this?

[PurpleNails]

Doctors know very little about antibodies except that they can fluctuate greatly and its not known how to control them.

The levels don’t always reflect the severity of the FT4 & FT3 levels.

The anti thyroid medication works by reducing production of NEW hormone it doesn’t affect EXISTING thyroid levels or have any direct impact on antibodies.

The treatment doesn’t treat either the CAUSE of the disease or the antibodies as a RESULT of the disease. The objective is to control levels until the disease naturally runs it course.

2.5 weeks is not enough time to expect any improvement this is far too soon. You are NOT defeated.

What do you mean by TS4 & TS3?

TSH Thyroid stimulating hormone.

FT4 (the free thyroxine)

FT3 (the free triiodothyronine)

The FT4 & FT3 will gradually reduce once you are on the right dose of anti thyroid. 6 weekly testing is standard to properly gauge how a dose affects levels.

The TSH can take longer to recover - sometimes months (years in my case) Dose adjustments should be by FT4 & FT3.

It’s said the low TRab levels after 18 months is a good sign the condition is calming down & remission likely successful. The same likely apply to TSI antibodies.

For most patients antibody testing aren’t repeated beyond confirmation at diagnosis. So the research is very limited.

[NDMama in reply to PurpleNails]

That does not give me any hope. Only 40-50% of cases ever go into remission. Am I just supposed to feel like this for 18 months until they decide if I'm going into remission or not? What if I don't? I've been dealing with thyroid issues for almost 10 years now. Hyper for 8 months until they caught it when I was hospitalized. I can't even take care of myself or my kids. I just got my dream job that I can't take because I can't even drive. This is ripping my life apart.

[pennyannie in reply to NDMama]

Hello NDMama :

I'm sorry you are going through all this ;

As already explained there is no cure or knowledge on how to control the immune system response which is attacking your body.

When Graves attacks your thyroid you need medical help because the thyroid is such a major, important gland and the symptoms expressed can be seen to be life threatening in some cases if not medicated.

The antibodies are an expression of the severity of the attack and which can " drive " your T3 and T4 levels to higher than normal levels and the AT medication should in theory block your T3 and T4 rising any further and your symptoms getting any worse.

Since you are in the States can I suggest you also look to the Elaine Moore Graves Disease Foundation website which has a similar platform for all Graves sufferers to post and look for advise on.

My thinking is you will be on a similar time line and likely find support from others within your area zip code and local information as to support systems that we not aware of here in the UK.

Graves is said to be a stress and anxiety driven auto immune disease.

I know it's not nice reading that and probably makes you more angry - as you see it as all your fault - it isn't - but it's a horrible place to be and your whole psychological, emotional, and mental perspectives are likely compromised.

I found Elaine's research and suggestions on how individuals with Graves have needed to reassess their own lives and start to understand their own unique triggers to why they have developed Graves very interesting.

There can also be a genetic predisposition to developing Graves.

My Graves was " prompted "" triggered " by an unprovoked attack on me by a man I employed as my assistant manager ;

[Bellazzurra]

Hello NDMama, 2.5 weeks is nowhere near enough time to see any real effects from Methimazole! Please give yourself time. In general, endocrinologists aren’t so concerned about autoantibodies (TSI & TRAb) for Graves’ Disease) and so Methimazole is prescribed to normalise the thyroid hormones (TSH, T3 & T4).

You can look into the Autoimmune Protocol (Dr Sarah Ballantyne) and selenium supplementation if you’re interested in lowering your autoantibodies. Even then, nothing is guaranteed and it takes a long while to see a reduction in autoantibodies - much longer than 2.5 weeks!

In my case, my autoantibodies reduced by 50% after a couple of months of treatment + dietary/lifestyle changes. I haven’t tested recently so I can’t give an update about where they are now. The good news is that you can still get better without completely eradicating your autoantibodies.

[NDMama in reply to Bellazzurra]

My thing is that I'm on meds and my numbers are still rising. It's exhausting. My life is stalled until I can get this under control.

[Bellazzurra in reply to NDMama]

@NDMama I’m so sorry. I know how frustrating this journey can be, especially at the beginning.

Autoantibodies can be unpredictable so if your FT3 and FT4 are trending downwards, you’re moving in the right direction. Do you have results for those?

If your FT3 and FT4 are increasing while you’re on Methimazole, then you may need to see your endocrinologist about that. They may need to adjust your dose or change the medication entirely.

[NIKEGIRL]

Hi. I’ve had Graves for about 15 months now. I was very sick and did not take the drugs as I was firstly in shock and secondly the drugs made me sick. After 6 months I got a drug change and I have now been on my drugs for 6 months and it has been a huge change. I feel a lot better. Don’t give up. I’m with a psychologist because I am struggling mentally with how I got here. I acknowledge my mental health and physical health are in crisis through prolonged stress. There is hope. U can have your dream job and look after your children but keep on your anti thyroid drugs and get the T4 and T3 levels down. U will get there.