Recently diagnosed with Graves. Please can someone help with my test results?I'm not clear on what it all means. Thanks xx

[xxButterflyxx]

In March this year I was getting headaches (unusual for me) so went to my GP who did some blood tests. The results came back as Hyperthyroid.

30/03/22: TSH less than 0.01, FT4 50.1

I was put on 20mg Carbimazole per day straight away.

Further blood test results:

21/04/22: TSH less than 0.01, FT4 29.7

14/06/22: TSH less than 0.01, FT4 18

11/08/22: TSH 0.41, FT4 9.7, FT3 3.5, TRAB 6.3

The Endo has requested I reduce Carbimazole to 10mg per day as she is happy that I am responding to the medication.

Any help in interpretating these results would be really helpful. Thank you

[PurpleNails Administrator]

Welcome to forum.

What is the range on FT4 & FT3?

By most ranges the 1st results look high & above range but with Graves in not unusual for levels to reach 3x or more the norm.

20mg isn’t a high starting dose. You’ve responded well and the most recent FT4 & FT3 look low? Are they under range?

Doctors tend to focus on TSH but can be slow to respond.

Reducing dose will stop the levels dropping further.

Trab is a positive level? this confirms Graves.

Have doctors arranged retest after 6 weeks of a new dose?

Ideally ferritin, folate, B12 & vitamin D have been tested.

Gluten often issue with Graves patients, do you have stomach issues?

Have doctors reminded you to be vigilant for side affects of carbimazole (read the patient information leaflet carefully) and to be aware of thyroid eye disease.

[xxButterflyxx in reply to PurpleNails]

Wow! Thanks for the quick reply and information. So, they didn't tell me the range. The only info I have is what I have posted. I do have mild TED (confirmed by Opthalmologist) and am taking Selenium. The first blood test (in March) showed low vitamin D and I have been taking supplements since. I have also been taking a low dose of Propranolol but the Endo has advised me to stop taking it.I have another appointment booked in October with the Endo and they have requested I have a blood test before my appointment to test TSH, T4 and T3.

[PurpleNails Administrator in reply to xxButterflyxx]

Lab ranges vary so always required. If the results were given verbally or hand written do not accept them as accurate.

You need either online access or printed results with ranges.

Selenium:

Take maximum of 200mcg for maximum of 6 months. Beware of selenium rich food which can take you over limit. Reduce to 100mcg after six months.

Using *Preservative* free eye drops & wipes & rotating different brands seem to help. Liquid versions for daytime & gel versions at nighttime.

I found warm compresses (eg wheat bags, microwaveable gel masks) helped dry eyes. Very gentle massage toward lash line. This “unclogs” the blocked Meibomian Gland & lipid oil layer protects eye and retains the water. Some who have swelling find cold compresses more comforting.

If you like to moisturise near your eye area use water based clear gels not oil / cream. I did this as developed milia white spots round eye. I found any puffiness & swelling reduced when I switched.

Low vitamin D:

Try and obtain exact results. Over the counter products are rarely sufficient to treat deficiency. What dose are you taking?

Consider a magnesium supplement and K2 supplement which are important co factors of Vitamin D.

Have you stopped propranolol? I was told to stop propranolol. It should not be stopped abruptly. Always reduce slowly. After a few days I had continuous migraines. GP resumed them and I still take low dose for migraines prevention.

Just to explain your results a little:

TSH - Thyroid stimulating hormone is a pituitary hormones which signals the thyroid to produce. It drops when your thyroid hormones are high signalling to lower (or stop) producing.

(TSH would rise if hormones were low)

The thyroid produces T4 (thyroxine) & a tiny quantity of T3 (triiodothyronine). Some T4 is converted to T3. T3 is the more powerful & active hormone needed by cells. The unbound & available to use thyroid hormones are called “Free”

FT4 & FT3 are whats tested.

With Graves the immune system attacks the thyroid and stimulates it causing the levels to go high. The thyroid is the victim. The autoimmune aspect can’t be treated.

Carbimazole is used as it temporarily alters the way the body can use iodine so reduces the production of levels. The existing hormones are used but the right balance has to be found to keep FT4 & FT3 in range. TSH is unreliable you need dose adjustment by FT4 & FT3.

Doctors aim to treat you with antithyroid for around 18 months. The objective being the dose is reduced until not needed and the overactive levels stop. (Remission)

If doctors feel remission not likely or you later “relapse” they suggest further permanent treatments.

First option is RadioActive Iodine but this is not recommended for those with TED therefore you have option of surgery.

Has this been discussed with you?

You can opt to stay on carbimazole longer term if stable.

My hyper is from nodule, not autoimmune. I self managed TED symptoms as was told as my hyper is not autoimmune TED was not a possibility. Have been on waitlist to investigate eye misalignment.

[xxButterflyxx in reply to PurpleNails]

Ah okay, I didn't realise that ranges could be different. I will try and find out what they are. My results were sent within a letter from my Endocrinolgist and this is the first time I've seen them all in writing, as previously my GP just told me over the phone (without much context). As she was happy with the results, I didn't really think to question anything but now that I understand the condition a bit more, I will be ready to ask more questions in future.I have been taking Selenium for approx 2.5 months so far and the dose is 200mcg per day. I didn't know I had to avoid selenium rich foods, so I will definitely look into this. Thank you.

I currently use Optrex intensive eye drops for dry eyes. Are the gel versions better than liquid?

Thank you for the suggestion of using warm compresses, I will definitely give it a try!

I'm taking 2000 IU per day of vitamin D as that was what I was told I should do by my GP.

I've not stopped taking Propranolol yet as I only received the letter from my Endo today. I have been taking 10mg tablets (1 or 2 per day), which I was told by my GP is a low dose?

The Endo advised at my appointment that the AT medication should be taken for 18 months, so I will finish in Sept 2023. She also mentioned that a more definitive treatment will be considered if Carbimazole is unsuccessful ie surgery. I'm not keen on that idea from some of the things I have read. Like you have said, the Thyroid is the victim. I am aware that taking Carbimazole for a long time can damage the liver.

Thanks for all your help so far, I really appreciate you taking time to answer my questions

[PurpleNails Administrator in reply to xxButterflyxx]

200mcg is fairly high dose so if you were to eat a lots of selenium rich it could be too much. eg 2 large Brazil nuts grown in selenium rich soil would be an added 182 mcg & too much.

With eye drops I think it personal preference. I use hylosan extra. Some like gel version at night. They last longer as thicker, but can obscure vision, hence using at night. Whats important is they are preservative free. They usually clearly state if they are preservative free - but do not advertise if they do contain preservatives.

For propranolol take 10 mg 1x a day for 2 weeks. Then I would spilt at pil and take 5mg for fortnight. Perhaps then every other day, or stretch out timings. See how you go. Some stop with no issues.

If the are sustained release they should not be spit but standard pill can be.

“I am aware that taking Carbimazole for a long time can damage the liver”

Liver issues can very rarely develop with carbimazole. The risk is higher with PTU (propylthiouracil) and that’s under 1%

It is a rare affect (in some) - rather than as a result of cumulative use. There no scientific limit at which point it’s necessary to stop, that’s just a easy way for doctors to explain it.

[Buddy195 Administrator]

As PurpleNails has outlined, take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. If I have a TED flare, I return to 200ug until my eyes have calmed.

Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head.

Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.

I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.

tedct.org.uk

Please be reassured, my eyes now look nothing like they did 18 months ago, so try not to panic. For me, huge sunglasses and bright lipstick helped me have confidence to face the world. Please keep posting if you need any further advice or support.

I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling.

I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.

I also take lutein & zeazanthin (Eye complex 7 on Amazon) for overall eye health, so this is worth considering if you have any concerns about your vision.

[waveylines]

I just want to add that if you want to find out the ranges if you ring the hospital and ask to be put through to the labs they should be able to tel you the ranges for each of the tests.

[pennyannie]

Hello xxButterflyxx and welcome to the forum :

Graves is an auto immune disease for which there is currently no cure and quite why this has happened to you, at this point in time in your life is likely a question going around in your head.

There could be a genetic predisposition with someone, maybe a generation away from you having a thyroid health issues : It could have been triggered by a sudden shock to your system like a car accident or the unexpected death of a loved one or it could have simply happened out of the blue for no apparent reason.

Should you wish to read around Graves I believe the Elaine Moore Graves Disease Foundation Trust the most well rounded of all the websites. elaine-moore.com

There are various sections and articles covering Graves triggers, lifestyle influences, complimentary options and so much more that current mainstream medical know.

Elaine has Graves and finding no help with her continued ill health after RAI thyroid ablation started researching this poorly understood and badly treated AI disease herself and has since dedicated her life to educating mainstream medical and patients alike, There are several published books which I found a little heavy going, but then I'm dyslexic, and her website which I think is a little more PC and Elaine is a recognised authority on all things Graves with a World wide following.

Essentially all the Anti Thyroid drug, either Carbimazole or PTU does is buy you time buy blocking your own thyroid hormone production and hopefully within this NHS time frame your T3 and T4 drop back down into range, your symptoms reduce and you become ' you ' again.

It does take time and skillful endocrinologist to work and adjust the AT drug throughout these months as if left too long on a dose there is a risk of your T3 and t4 falling too far through the ranges and then you experience symptoms of hypothyroidism.

There is a list of symptoms, both hyper and hypo, on the Thyroid UK website who are the charity who support this forum and this might help you identify where you are in your treatment plan. thyroiduk.org

Both hyper and hypo are the extreme opposite ends of the T3 measuring stick as too high a T3 for you, and you have symptoms of hyperthyroid, just as too low a level of T3 for you and you will experience symptoms of hypothyroidism which are equally disabling.

When metabolism is running too fast or too slow there is a chance your body will be unable to extract vital nutrients from your food and is it essential you keep your core strength strong and solid during this first phase of this disease and It's sensible to get your ferritin, folate, B12 and vitamin D up and maintained at optimal levels, on which we can advise.

I too have TED but mine was caused by the RAI thyroid ablation back in 2005 and i became very unwell around 10 years later and when I started my research - very much back to front !!!

The most current research is suggesting that the longer the AT drug is used the better the outcome for the patient so this maybe of help to you should you come up against an intransient hospital trust where guidelines are followed to the letter.

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

I hope the AT drug has alleviated most if not all of your symptoms, it's a bit like being put on automatic pilot, as the thyroid needs protecting as it is a major gland and responsible for full body synchronisation including you physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

[twinkiegal]

Hi there, welcome to the Graves family! I have had Graves for about 14 years. I live in the US so things are a bit different here but not much when it comes to the treatment. My grandmother on one side and my grandfather on the other side both had Graves and my sister and I both have Type 1 diabetes that was diagnosed when she was 6 and I was 4. So we have a lot of auto immune things in our family!

I just wanted to tell you to definitely do a lot of research and decide for yourself what you want to do with your Graves. As you know, symptoms vary and treatment responds differently with each person so you just need to do what works for you.

I had the classic symptoms of racing heart, exhaustion, and weight loss when I was diagnosed. I responded quickly to PTU (I got hives from methimazole, the US version of carbimazole). I went in to remission after the typical 18 months but when it came back a year later, my endo of course wanted me to do RAI. At this point I had done a lot of research and really thought that was a radical procedure, my symptoms were noticeable but I could still carry on with life, it wasn't horrible. I said no which made my endo really mad so I stopped going to her. I live in a smaller town and the endo eventually left and so now my primary doctor is an internist. I think this is one difference in the US, it sounds like in the UK, you need to go to an endo to get certain medicines prescribed, in the US, any doctor can prescribe any drug. My internist also wanted me to get RAI but was willing to work with me using PTU long term. About a year later, my hair started falling out and we thought it was from the PTU, but now looking back and going through it a couple more times, I now realize it was when my T3 was going low. I then went through a couple of years of taking PTU, getting stabilized, stopping, then getting hyper again.

Fast forward to today, I still have my internist as my primary doctor but I also go to an endo in another town who is willing to work with me and knows that I am only going to get RAI or a thyroidectomy as a last resort. I switched over to methimazole and was able to tolerate it starting with very small doses and working myself up. I have been on it for almost 3 years. It is definitely a balancing act, much like diabetes. My endo is very similar to what I read on here, she looks at my levels and if everything is within the normal range, she says I'm fine and to stay on my current dose. My last test my T3 was slightly under the normal range, my T4 was low and my TSH was in the middle and she was delighted and wanted to keep me on the same dose even though I was definitely feeling sluggish. So she thinks I am on 2.5 mg a day, but I cut it down to 2.5 every other day and get private tests every 6 weeks to make sure things are going ok. My endo is testing me every 6 months... sigh.

That being said, I know two people both who had Graves and one got RAI and one got a thyroidectomy and both are doing very well and are not having problems getting everything balanced. It just kind of comes down to what you want to do. Some people have had great results with RAI and they feel so much better. Some have a horrible time with it. I felt it wasn't right for me but you may be different. Someone linked this publication on this site a while back and it was what made my endo decide that maybe I could go on AT medication for the rest of my life.

liebertpub.com/doi/full/10....

Hope it all goes well for you!