Blood test results

[Ladywiththebaby]

Hi there,

I was diagnosed with Graves’ disease at the end of May with the following numbers:

T3 30.6 (range 3.5-6.5)

T4 58.8 (range 10.5 - 21)

TSI 14 (range = <0.56)

TSH <0.03 (range 0.35 - 5.5)

And put on 20mg Carbimazole twice a day.

I had bloods done again on the 21st July and the results were:

T3 7.2 (range 3.1 - 6.8)

T4 19.9 (range 12 - 22)

TSH 0.007 (range 0.27 - 4.2)

Dosage decrease to 20mg once a day

The weight is going back on and although my hair is definitely thinner I’m not finding it fall out as much. Can’t say I’ve really ever noticed many symptoms although Endo said I do have TED in right eye but just to keep an eye on it?

Is this good news that my numbers have dropped so quickly? Is there any chance I won’t have to be on the Carbimazole for much longer?

Thanks in advance.

[PurpleNails]

I think you’ll remain on carbimazole for some time yet.

You had high levels & high TSI antibodies.

Usually carbimazole is continued for 18 months.

The dose adjusted to keep you in range, 40mg is a high starting dose so it normal to reduce it down. Your FT4 is in range but FT3 still a little high. Many doctors wouldn’t reduce to 20mg but by another 6-8 weeks that would have likely balanced out.

There a lot of research to say longer term (years) on low dose carbimazole can be a better choice.

Doctors tend to rush the process & limit it to 18 months or earlier. This is a policy rather than for a scientific reason. Stopping medication to see of you stay stable & when levels rise suggest definitive treatment (surgery or RAI) on the basis you relapse.

Doctors think of 5mg being the lowest, but many take every other day or even half a pill every other day per day which keeps them well.

If the lowest dose pushes you to hypothyroid levels then stopping is necessary.

Is an ophthalmologist monitoring your eye? Do you have preservatives free eye drops to help?

[Ladywiththebaby in reply to PurpleNails]

Thank you for taking the time to reply. My Endo said no need for Ophthalmologist and to just keep an eye on it but as I have private healthcare I asked my GP for a referral and I have my first appointment next week. I’m not comfortable doing nothing about my eye which is at times noticeably open wider. No eye drops currently but the dryness only tends to be a problem if driving in the car with a window open or late at night when tired and def not every day.

[PurpleNails in reply to Ladywiththebaby]

I have non autoimmune hyper & forever being spoken to by doctors who assume I have TED diagnosed - then told by other doctors how stupid - I can’t have TED as negative for autoimmune.

MRI confirms I had TED. Specialist hid report & said everything ok I can discharge you. I obtained the report or I’d never have known.

Upshot, care for TED is shockingly poor & these “self care” methods can help.

Taking a selenium supplement is said the help protect eye.  200mcg for up to 6 months.  Then reduce to 100mcg.  Can be brought over the counter.  Bear in mind selenium rich food can take you over the maximum requirement.

For dry eyes I recommend warming eye mask & *preservative free* eye wipes / drops / gels. Some like to use drops in day & gel at night, but I use carbomer gel eg Ocufresh gel which is a lighter gel which melts quickly in.  Rotating different brands seem to help.  

Very gentle massage toward lash line, you can use fingertips or carefully with roller ball tool or gua sha facial stones.  Warmth & message “unclogs” the blocked Meibomian Gland (tiny glands along lash line) and allows lipid oil layer to flow.  This protects eye and helps retains the water.  

If eyes more swollen, inflamed or painful, I switch to cold compresses.

If you like to moisturise near your eye area use water based clear gels not oil / cream, this will lessen any clogging. I did this as developed milia white spots round eye.

TED & Graves stem from the same autoimmune activity but do not always correlate & run separately. ie TED can precede hyper.

Having stable thyroid levels is best factor to help TED.

Serious complications with vision or changes to eye appearance are very rare.  Don’t Google and panic over worst case scenarios, they are always the most severe examples.

It can help to keep a photo record of eyes eg take a photo every 2 or 3 weeks. I put in an album on phone & hid behind a cute kitty picture.

Good site for info

tedct.org.uk

[Ladywiththebaby in reply to PurpleNails]

Thanks - lots of great info here!!

[pennyannie]

Hey there again :

Yes, it's good news that yourT3 and T4 levels have dropped back down - and hopefully your symptoms are relieved - though from memory I think your symptoms were minimal - weren't they ?

The AT drug semi--blocks your own new daily thyroid hormone production and as your T3 and T4 are all but back in the range this dose of the AT drug now needs to reduced down.

It will likely reduced further in a few weeks time as otherwise your T3 and T4 will fall too far through the ranges with you starting to experience the equally disabling symptoms of hypothyroidism.

Your metabolism was running fast - you lost weight - the AT drug has slowed your metabolism down - and the weight loss stopped - and now returning to hopefully ' just ' your normal weight - but if your weight continues to increase it's a symptom of a slowed metabolism and that the AT dug needs adjusting /' titrating down again.

The blood tests tend to run a few weeks behind symptoms so keep a dairy of symptom changes, they can be quite subtle but worth discussing with your doctor/endo rather than just be an equation for the computer to guess where your wellness ' sits ' .

When metabolism runs too fast - or too slow your body will struggle to extract key nutrients through food, no matter ho well and clean you eat - please arrange for your ferritin, folate, B12 and vitamin D to be run as these core strength vitamins and minerals, if running low can compromise your health issue further.

Please reread my previous reply which goes into some length on treatment options and research papers - but you need to stay on the AT drug for as long at takes for your immune system to calm down and the most recent research is talking years rather than months.

For reference again ;- pubmed.ncbi.nlm.nih.gov/pub...

[Ladywiththebaby in reply to pennyannie]

Thank you very much - very helpful! And yes I had minimal symptoms luckily!