are my thyroid readings ok?

[jiankang]

I’m 65 years, female, retired and have had graves for 5-6 years. Am presently on 5 mg carbimazole 6 days a week. I have good (can function)) months and bad months when I can hardly function for half the month - fatigue, brain fog, stomach cramps and nausea. When my weight went up recently ( about 3.5 kg) i had some relatively good months but recently in the last two months I have been losing some weight (about 1 kg) and have been feeling unwell. There was no reason i could see for the increase and decrease in my weight. Ive been gluten free for a few years and on zinc, magnesium, selenium, vitamin B and D, and omega 3 supplements daily. I’m also on rocaltrol ( activated vitamin D) one tablet a day for osteoporosis.

Everything seems to be within range in my recent blood test and almost similar to my last test results in December 2023 except for vitamin D which was sufficient then at which point I reduced my vitamin D supplement from 2000 to 1000 a day.

Latest/ September results:

TSH: 1.45 mIU/L (0.35 - 4.55)

Free T4: 15.9 pmo1/L (12.2 - 22.4)

Free T3: 4.2 pmo1/L (3.5 - 6.0)

Folate: 40.71 nmo1/L (>12.1)

Iron: 21.3 umo1/L (9.0 - 30.4)

Ferritin: 111.6 ug/L (10.00 - 291.0)

Vitamin B12: 424 pmo1/L (156 - 672)

Vitamin D 25-hydroxy: 69 nmo1/L (75 - 250)

[Vit D was 85 in dec 2023 and 110 in january 2024.]

Glucose: 4.6 mmo1/L (3.9 - 6.0)

Insulin serum: 10.7 uIU/ mL (3.0 - 25.0)

I also tested a few other markers ( ESR, hsCRP, interleukin 6) which were all within range.

Are my readings okay? If they seem okay to you I will wait and see and not rush to my endocrinologist. I wonder if my particularly bad last two months can be just because of my drop in vitamin D and have increased my vitamin D again.

I am also wondering if HRT might help.

Many thanks for your thoughts.

[pennyannie]

Hello Jiankang and welcome to the forum :

You may well feel a little better with a slightly higher T4 which in turn should give you a slightly higher T3 - as it is too low a level of T3 that is causing these symptoms of hypothyroidism.

All the Anti-Thyroid drug does is basically ' buy you time ' while we wait for your immune system to cal down down and hopefully your thyroid reset itself without the need for any drugs.

The AT drug - Carbimazole is semi-blocking your own new daily thyroid hormone production and generally speaking it's best to try and stay at around mid point in the T4 range-

currently your T4 is at around 36% through its range -

so you 're total weekly dose of the Carbimazole is 30 mcg - 6 days by 5mcg -

so you could drop another day or two of the 5 mcg AT drug -

or maybe longer term think of chopping the 5 mcg into half so taking the same dose 7 days a week to dovetail better with your own body's natural thyroid hormone production.

Your TSH has bounced back into range - so that's good and probably means your over the worst of the immune system malfunction -

Do you ever get your Graves antibodies rerun - so you track your immune system response

Are your eyes involved at all ?

I do not know about HRT -

and your core strength vitamins and minerals look pretty good - I now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.

I do not know the hospital treatment regime for Graves in your country -

We do now have this research which i think is of interest :-

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

ncbi.nlm.nih.gov/pubmed/306...

The most well rounded of all I researched ( though 10 years too late for me as I had RAI ablation for Graves in 2005 - which I deeply regret ) -

is that of Elaine Moore's books and her Stateside website elaine-moore.com where there is also a forum much like this UK forum and where, if around, Elaine offers a private, one to one, message service

[jiankang in reply to pennyannie]

Thank you for sharing your thoughts pennyannie. I will try to decrease my carbimazole abit as suggested and see if that might help. The last time i saw my endo she said i was on such a low dose that i did not need to reduce the dosage although my GP had suggested reduction. When my endocrinologists see my thyroid hormones within range they say all my symptoms have nothing to do with my thyroid. Ive consulted with three different endocrinologists. Thank you for the links. I am aware that long term use might help so i have not thought of stopping my carbimazole. The one time I stopped, everything went out of whack and i had to start all over again. I did check my thyroid antibodies - they are all still present. I have had eye problems from the time i was diagnosed with Graves - my opthamologist says i have mild thyroid eye disease. I’m monitoring my eyes yearly. I hope reducing my carbimazole a little as you suggest will help. Beats feeling ill with nothing to try. Thank you.

[pennyannie in reply to jiankang]

Ok then - yes - it's all very well the endo saying ' this ' or ' that ' but you are living with the disabling symptoms - not them !!!

All you can do is try - ultimately you need to be on as low a dose as possible - and if it doesn't work - you have the medication in the cupboard and know you can increase back up the AT drug.

[jiankang in reply to pennyannie]

Yes definitely worth a try. Thank you for the encouragement.

[pennyannie in reply to jiankang]

Maybe try monitoring yourself on your blood pressure, pulse and body temperature -

Take AM and PM bench mark readings and just see if there are any untoward or hopefully positive improvements -

I found whilst my blood pressure and pulse remained pretty stable - my temperature slowly increased a little ?

[jiankang in reply to pennyannie]

Interesting. I used to monitor my BP and pulse morning noon and night but changes in my BP did not seem to correlate with my symptoms. For a few months last year I had quite low BP but it’s now quite normal. Do you use a normal thermometer to measure your temperature? I read somewhere that we need to get a special thermometer that can detect small changes in body temperature.

[pennyannie in reply to jiankang]

Oh no - I use just a normal old fashioned thermometer - nothing fancy for me !!

[jiankang in reply to pennyannie]

👌🙏

[jiankang in reply to pennyannie]

I came across this study on the pharmacological effects of carbimazole which I thought was quite interesting. It seems it’s still titrating/ trial and error on correct dosage. ncbi.nlm.nih.gov/pmc/articl...

[pennyannie in reply to jiankang]

I think while the immune system is very active and ' Graves raging ' the response will be constant fluctuations in thyroid hormones and the dose of the AT drug is but a guess - and to try and offset the worst case scenario.

and since blood test results tend to run a couple of weeks behind symptoms being tolerated it's also important for the patient to work with the endocrinologist as to the symptoms being tolerated and the AT dose dose adjusted accordingly.

Regular monitoring is essential but unfortunately people are sometimes left on too high a AT dose and suffering the equally disabling symptoms of hypothyroidism which mainstream medical seem to be not so concerned about

[jiankang in reply to pennyannie]

Yes. Thanks again for sharing your thoughts. Reduced my carbimazole to 1/2 tablet today.

[KatyMac68]

Oops sorry wrong place!