Graves disease

[Scavendi]

I was diagnosed with Graves in 2014, and have been taking carbimazole since then, apart from a brief spell of stopping treatment in 2015 - but the hyper thyroid returned. After turning down radioactivity treatment in 2017, the consultant no longer wanted to see me and I was put on low dose carbimazole. I currently take 5mg on alternate days, and have done for several years, and no problems. Normally the GP does a TSH test only - about 4 monthly. I have a new GP who agreed to also test T3 and T4 . Usually my bloods are taken early morning and before breakfast, but this time I had to have mid afternoon bloods taken . My results show lower TSH , so the GP wants me to up the carbimazole to 5mg daily. I seem to remember that the timing of taking bloods can cause different TSH results? can you advise please as I don't want to up carbimazole un- necessarily?

NB I also have a multinodular goitre

my blood test results are below

free T4+T3+TSH:

serum free T4 level 12.7 pmol/L (9.1 -17.6)

Serum TSH level 0.26 mu/L (0.35 -4.9) Below low reference limit

Serum free triiodothyronine level 3.6 pmol/L (2.4 - 6.0)

Thanks for your help

Sue

[tattybogle]

You are correct Scavendi.

TSH is highest middle of the night/very early am ... it then falls gradually to it's lowest around 1-3 p.m ..... then gradually rises again . (well ... i say 'gradually' ~ it' not a smooth line, there are little 'mini peaks' every 45 mins or so as TSH is produced in spurts )

in some people the difference will be negligible , but in others it can be as much as 40%

So a 9 am TSH result is expected to be 'a little bit' higher than a lunchtime one .

it is very likely your TSH would have been 'in range' (just) if it had been tested at 9 am , and your fT4 / FT4 levels are pretty low in range .. so i would not agree to increase Carbimazole based on a one off low TSH taken later in the day than you usually do .. keep an eye on it obviously .... arrange a retest in a few months time and look out for a rising trend in fT4 / fT3 / falling TSH over time ... but other than that why rock the boat if you feel well and stable.

increasing Carbimazole will lower fT4 / fT3 levels... and they are already pretty low . taking them much lower than that would leave you vulnerable to experiencing symptoms of hypothyroidism

TSH over the day :

..

[tattybogle in reply to tattybogle]

p.s re fasting : eating breakfast can also lead to getting a lower TSH result than a fasting test.

see the reply in this post which starts " THE NHS SAY THE TSH TEST DOES NOT NEED TO BE A FASTING TEST , THIS SHOWS WHY IT DOES "

healthunlocked.com/thyroidu...

[Scavendi in reply to tattybogle]

Many thanks for your advice, much appreciated

[PurpleNails Administrator]

When we’ve been hyper the TSH can stay low, it’s not reliable.

Your FT4 & FT3 are already quite low, doubling your carbimazole dose will lower it further.

Your doctor will be pleased your TSH is in range but you could have hypothyroid symptoms.

If you are well, there’s no need to increase carbimazole dose. Or suggest you take 4 days a week as a compromise.

Few GPs know how to manage & tweak carbimazole appropriately. Many specialists are not very expert either. I found the specialist nurse was most clued up.

Like you the hospital discharged me to GP for monitoring when I delayed RAI. My GP wouldn’t increase dose when I asked for additional 5mg on 3days as my FT3 was borderline high - because it was “in range”. I got an half hearted apology & extra 10mg after some arguing.

Might be worth testing nutrients folate, ferritin, B12 & Vitamin D.

What thyroid antibodies have you had tested in past?

[Scavendi in reply to PurpleNails]

Thank you for your reply. I did have Serum ferritin level tested last week = 80 ug/L [5.0 - 204.0]

and Serum total 25-hydroxy vitamin D level = 73 nmol/L [50.0 - 200.0];

Thyroid peroxidase antibodies tested in April 2014

[PurpleNails Administrator in reply to Scavendi]

B12 & ferritin not too terrible. TPO antibodies test for autoimmune (thyroiditis also referred to as Hashimoto’s & present with Graves) not specific for Graves.

Was TSI or. TRab ever tested?

[Scavendi in reply to PurpleNails]

I don't think so. It was assumed I had Graves because my mother and also my brother were diagnosed.

[pennyannie]

Hey there again ;

I would stay on the dose you are on and probably chop it in half and take the same dose everyday viz: - 2.5 mcg Carbimazole :

The TSH in Graves is a very unreliable measure of anything and the antibodies circulating within the blood tend to get stuck on TSH receptor sites causing a low suppressed TSH even when T3 and T4 are low in range.

Your T3 is around 33% and your T4 around 42% through the ranges.

How are you feeling ?

Non optimal levels of core strength vitamins and minerals will be compounding your health further - do you have any recent readings for ferritin, folate, b12 and vitamin D ?

How is the goitre, are you able to eat, swallow and breathe with ease ?

In which country are you as guidelines may differ regarding treatment options :

For Graves Disease the most recent research is suggesting the longer the patient stays o the AT drug the better the long term option ;

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

Did you check out Elaine Moore as mentioned previously ?

[Scavendi in reply to pennyannie]

I'm feeling tired but sleep well.

Serum ferritin level tested last week = 80 ug/L [5.0 - 204.0]

and Serum total 25-hydroxy vitamin D level = 73 nmol/L [50.0 - 200.0]

Am in the UK.. Re th goitre eating, swallowing and breathing are fine, though my voice is a bit gravelly especially first thing in the morning. 🤣 Thanks for sending the article link - it's interesting...

[pennyannie in reply to Scavendi]

Your T3 and T4 levels maybe a little low for you and with symptoms of tiredness and sleeping well could be you are dropping into hypothyroid territory.

Taking a smaller dose of the AT drug daily might leave you less symptomatic ?

[Scavendi in reply to pennyannie]

I will try the daily idea, thanks. But id I was hypothyroid wouldn't the TSH get higher rather than lower?

[pennyannie in reply to Scavendi]

In theory, yes, the TSH rises - signalling a case of hypothyroidism.

The reality is the TSH is an unreliable measure of anything - especially if seen in isolation, and especially so when you are dealing with an auto immune thyroid disease, and or goitres and AT drugs.

Your T3 and T4 are not even 50% through the ranges and by increasing your AT drug your T3 and T4 will fall lower and compromise your health issues further.

It should not be assumed you have Graves - why can't the NHS run a blood test to confirm this ?

With Graves you have either TRab - Thyroid Blocking or TSI - Thyroid Stimulating antibodies controlling your thyroid function and these 2 extremes vie for control of your thyroid and there are phases where they tend to cancel each other out - and leaving you feeling relatively normal - for you.

The TSH in Graves patients is an even more unreliable measure of anything as Graves antibodies tend to circulate in the blood and ' sit on TSH receptor sites " thereby ramping up, or down, T3 and T4 thyroid hormone production.

I have Graves, my only symptom was insomnia - and though well on the AT drug had RAI thyroid ablation th following year in 2005 - a treatment I deeply regret - but anyway - there is no way of cleaning my blood and TSH receptor sites of the Graves antibodies circulating in my blood.

So the next option was to burn out my thyroid in situ - rendering it fully disabled - so no matter how much ramping up or down is going on - I've no thyroid response as I've been flipped from hyper to hypo - from automatic transmission to manual - and take thyroid hormone replacement - to be well.

My TSH is at 0.01 and I am not hyperthyroid but very much hypothyroid - but not as hypo as the NHS would like me - as I became very unwell when it was insisted that I needed a TSH in the range.

I now self medicate and am much improved taking Natural Desiccated Thyroid as the NHS routinely only offers T4 monotherapy and I was denied both T3 and NDT back in 2018.

Sorry for delay - this is my 5th try at getting this up on the forum - not sure if it's me - generally is - or glitches somewhere else :

[Scavendi in reply to pennyannie]

Thank you for your email - Sorry to hear how you have gone through so much. I refused radio active iodine - mainly because as you say once its done it's done - and I have a medic brother with Graves who advised me. But the consultant then didn't want to know me.

[pennyannie in reply to Scavendi]

Yes, I'm afraid if you don't follow the suggestion - there is the risk of feeling ignored, but as I understand it they cant refuse not to treat you.

Even now with this current research paper I sent to you - RAI is still offered as the first and sometimes only treatment option in what we presume to be a health care setting and the necessary information not shared or openly discussed with patients.

I think if you ' shop around ' there are enlightened endocrinologists but currently within the NHS it is cash and time poor and I'm sure the pressure is on to reduce O/P waiting list times rather than extend them.

[SlowDragon Ambassador]

Suggest you retest 6-8 weeks after taking 2.5mcg Carbimazole every day

Test early morning around 9am, only drinking water between waking and test for highest TSH

Meanwhile get Vitamin D, folate, ferritin and B12 tested

What vitamin supplements are you taking

[Scavendi in reply to SlowDragon]

Thank you. I do think that having the bloods taken mid afternoon last week instead of early morning etc contributed to the lower TSH.

I am prescribed Calci -D (as I have osteoporsis). Otherwise I just take Zinc /Vitamin C (My hair is getting much thinner and the GP advised zinc)

[SlowDragon Ambassador in reply to Scavendi]

Hair loss is frequently low iron/ferritin

Obviously essential to test vitamin D, folate, ferritin and B12 as next step

[Scavendi in reply to SlowDragon]

Hi the GP did test for vit D ( as I asked, though ususally they won't test it) ,

Serum total 25-hydroxy vitamin D level = 73 nmol/L [50.0 - 200.0]

and also Serum ferritin level tested last week = 80 ug/L [5.0 - 204.0]

[SlowDragon Ambassador in reply to Scavendi]

How much vitamin D are you currently taking

Aiming to get vitamin D at least over 80nmol minimum and 100-125nmol might be better

Ferritin looks fine

Have you had CRP tested (inflammation)

Get folate and B12 tested next

[Scavendi in reply to SlowDragon]

I take 1 Calci D tablet every other day i.e. 2500mg calcium carbonate (equivalent to 1000mg calcium) and 1000 I.U. (equivalent to 0.025mg) cholecalciferol (Vitamin D3).

re CRP testing - not had as far as I know?

I had folate done Dec 2019 and was 7.0ug/L (3 - 17) and also 03.11.2020 it was 5.6 ug/L

Vit B12 was Dec 2019 and 369ng/L (190 - 800)

and on 03.11.2020 vit B 12 was 386 ng/L (190 -800)

Thanks for your help

[SlowDragon Ambassador in reply to Scavendi]

You need to retest annually

Folate and B12 low in 2019 and 2020

Many (most?) thyroid patients find it necessary/beneficial to supplement vitamin B complex continuously

Initially will need separate B12 first as well

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...