Can anyone help me understand my levels ? I’ve had the 131 done and did some blood work I just need to know if my levels are high or low plz

[Princess_01]

I have a upcoming appointment with my endocrinologist but in 2 months I would like to know if anyone can tell me if my levels are high or low

[Lalatoot]

Princess if you look at the very right hand side of your printout you will see sets of figures, a lower number and then a higher number. This is the range. Your result for each individual test should be within the individual test range.As the results state you have one low result below the bottom of range and 3 result that are high above the range.

This fits with how the endocrine system works. Usually the higher the thyroid hormone levels the lower the TSH result.

Your thyroid levels are too high and your TSH is low as a result.

[Princess_01 in reply to Lalatoot]

Ok thank you !maybe I should wait a little more to get more blood work done to see if it gets better also I have a upcoming appointment I’m on no medication at the moment I’m even considering to change my endocrinologist .

[pennyannie]

Hello Princess and welcome to the forum :

1-31 RAI thyroid ablation is a treatment whereby the thyroid is slowly burnt out in situ .

It can takes, days, weeks, or months for your T3 and T4 levels to fall back down into range and your TSH may or may not recover and is not a reliable measure of anything.

Which is why you need to be dosed and monitored on your T3 and T4 blood tests results when you see your specialist as your TSH feedback loop - the HPT axis - the Hypothalamus / Pituitary / Thyroid loop is now disabled and doesn't work after RAI treatment.

When did you have the RAI ?

Are you diagnosed with Graves Disease ?

We really need more information to help you further :

Since you are Stateside do you know of the Elaine Moore Graves Disease Foundation website ?

I found this the most well rounded website of all my research and you might like to use the open platform within the Foundation, much like this forum, to find other more local Graves people and treatment specialists in your time zone, and likely local support for this poorly understood ad badly treated auto immune disease.

[Princess_01 in reply to pennyannie]

Hello and thank you for the reply . I had the RAI December 9,2021 then I did the blood work maybe too soon January. I just felt a lil more tired then I usual do . My endocrinologist had me on medication for like a year that wasn’t working and I was diagnosed 2 years ago with graves and it my eyes have been effected by it as well . I am considering orbital decompression surgery soon and do not want to move forward if my levels are out of wack I don’t want to take that risk . It’s been a long journey looking for a doctor who really is knowledgeable about this condition. I will look into the Elaine Moore Graves Disease Foundation website as well thank you for your input .

[pennyannie in reply to Princess_01]

I think you may need to wait for the orbital decompression until such time as your Graves antibodies are all but gone and a very distant memory.

Wait until you are stable on thyroid hormone replacement - are you on any medication yet ?

The RAI slowly burns out the thyroid in situ and it can take days, weeks or months as surprisingly enough the actual dose of RAI is not as exacting you may think.

I was put on 100 T4 immediately after drinking this toxic substance.

RAI induced hypothyroidism is said to be more difficult to treat as it slowly burns away invisibly destroying and disabling your thyroid.

RAI is known to trash vitamins and minerals and you need optimal vitamins and minerals for any thyroid hormone replacement to work well for you.

Please ensure you monitor your T3 and T4 and maintain optimal levels of ferritin, folate, B12 and vitamin D ;

You can post any results for explanation and further advise on this forum, just remember new information needs a new post, especially after around 24 / 48 hours

Your TSH feedback loop is now broken, and the conventional TSH blood test not a reliable measure of anything as your Hypothalamus / Pituitary / Thyroid loop is now broken and you must be dose and monitored on your T3 and t4 thyroid hormones.

We generally feel at our best when our T3 and T4 are kept at around a 1/4 ratio T3 / T4 and as your gland becomes totally disabled you'll likely feel at your best with a T4 up towards the top end of the range along with a T3 in around mid 5's.

I now feel much better on a Natural Desiccated Thyroid though have to source this myself as in the UK we seem routinely to only be prescribed T4 through our NHS service.

I believe things are slightly different in the States and understand you will be more able to source alternatives to T4 monotherapy should you find T4 doesn't restore your wellness.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

Some people can get by on T4 only :

Some people find that T4 seems not to work as well as it once did and add a little T3 to their T4 to make a T3/T4 combo:

Some people can't tolerate T4 and need to take T3 only :

and some other people find they feel better on NDT which contains all the same known hormones as the thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains and has been used successfully for over 100 years to treat hypothyroidism.

[Princess_01 in reply to pennyannie]

Okay thank you for your feedback I’ll wait to see what the endocrinologist has to prescribe me do you have any other vitamin recommendations? I’ve been taking iron pills only but I’ll go to the store to buy some vitamins soon

Is Vitamin C or even selenium helpful ?

How long did it take you to have normal levels ?

I’m even considering removing my thyroid but that’ll be my last resort I’m just exploring my options and would need to adjust my diet to see if my levels can improve

Has this condition affect your eyes ?

[pennyannie]

Yes. when diagnosed Graves in 2004 my symptoms were insomnia, dry gritty eyes ad exhaustion which I'd lived with for all my life and these few symptoms relieved after around a week on the Carbimazole.

After RAI thyroid ablation in 2005 I developed thyroid eye disease :

it's an acknowledged side effect of RAI but no one told me - I learnt everything I know through the Elaine Moore website and this forum but 10 years too late for me.

The options is generally either RAI thyroid ablation or a thyroidectomy - to remove the glands either by surgery or burning it out in situ : the same end goal - no thyroid - either by surgery or RAI ablation.

Your thyroid is now in the process of becoming totally disabled and you will be need to be on thyroid hormone replacement.

All thyroid hormone replacement medications work better when you have optimal vitamins and minerals especially those ferritin, folate, B12 and vitamin D :

Selenium is said to help improve conversion and and TD - thyroid eye disease -

I was discharged from hospital in 2007 - my choice as I wasn't with a permanent doctor and in the process of moving - with good levels of T3 at around 60% and a T4 at around 90% through the ranges and feeling well :

[Princess_01 in reply to pennyannie]

It’s so unreal how when you go to a hospital no one tells you about eye thyroid or even when it comes to RAI. I had it for two years and a half now soon as I was diagnosed with graves. I was stressing so much because my father passed away and I think that triggered it . I didn’t sleep I didn’t have appetite so much happened in so little time . Thank you for your insight and your experience. I will get some vitamins and try to eat healthier

Have you experienced a thyroid storm ?

That’s what happened to me and was the first time I knew about my thyroid being a issue

[pennyannie in reply to Princess_01]

No, I read that can be very scary:

I actually believe I have been undiagnosed hypothyroid from a child :

I was diagnosed Graves 4 months after having been physically threatened and verbally abused by a man I employed as my assistant manager and spent the next few months working alongside him while I went through the legit company policies.

It was all to no avail - which - was what he told me at the time of the incident - as he had made sure that there no witnesses.

I think the stress of the above situation forced my thyroid to do a double somersault which resulted in a blood test reading of something as I'd been tested in previous years for hypothyroidism and nothing came of anything and I just struggled on thinking it was all " just me ".

My symptoms at diagnosis were exhaustion, dry gritty eyes and insomnia and I did also have a fine tremor in my middle finger.

I was very well on the AT drug, Carbimazole, and about a year into treatment I did experience a period of hyper type symptoms as I could eat for England and loose weight - for the first time in 56 years.

So I imagine I was originally with overriding blocking antibodies ( TR ab )with a brief period of stimulating antibodies, (TSI )towards the end of my 15 months on the AT drugs.

I only worked all this out 10 years too late for me as it was then 2015/16 and I had RAI on 2005.

Anyway, I think it helps to understand how your Graves may have been triggered as maybe you too tend to bury your feelings, hurt and emotions and soldier on believing you are ok and invincible.

Elaine Moore's website gave me some insight into the ' why's ' and now I try to be more accepting of what I can't change and find ways to relax that I enjoy for myself.

[Princess_01 in reply to pennyannie]

Thank you for sharing your story I’m sorry that you had to go through such a thing I also went through a similar situation at my job very stressful it triggers all type of emotions and confusion throughout our body . I hope you have healed from that trauma In some way possible . I heard plenty of people have been misdiagnosed or even undiagnosed with this condition there should of been way more resources and awareness since day one I know millions on people feel lonely and depressed with graves and even hopeless . Are you able to sleep better at night or are you still having trouble with that ? I am unfortunately having trouble getting rest and I will be changing my doctor and also endocrinologist because I feel like I’m going nowhere with them . I just try to stay positive with everything and not get into a depression state that’s how I’m staying afloat with graves I also joined a group of Facebook which helps tremendously. I haven’t gotten the chance to go on Elaine Moores website but I will

[pennyannie in reply to Princess_01]

Elaine Moore's Foundation website is Stateside so you may be able find other Graves sufferers in your area, and learn of local support and recommendations on which doctor / endo is more likely to understand the complexities of your Graves Disease.

It is early days for you as the RAI was just a couple of months ago so get tested for your core strength vitamins and minerals of ferritin, folate, B12 and vitamin D and if necessary work on getting these levels to optimal which forum members here can help you with once we see the results ad ranges.