New diagnosis of Graves

[Sally_at_APP]

Hello all,

I have written before on another post, but I have been advised to start a new thread. I recently saw an endocrinologist after 5 months of being on the waiting list.

He took my bloods, and after being on 30mg of Carbimazole for a couple of months (prescribed by the GP), my T4 and T3 suggested I was going hypo…. He said I shouldn’t have been put on such a high dose. He also did a T4:T3 ratio and said it was more likely that I had transient hyper/inflammatory? So he took me off the Carbimazole straight away.

I waited for the Graves antibody tests to come back, they were positive, so he put me back on Carbimazole (10 mg). He said it’s all a bit of trial and error until we get the right dose for me. I have been away and managed to get some thyroid function results in France after being on the medication for 2 weeks (his suggestion).. They suggest normal T3 and T4 (in range), but still low TSH - 0.127 (0.400-4.00).

I feel that all my results have told a slightly different story (my private ones that I got done said I didn’t have positive antibodies or were hyperthyroid - I was on Carbimazole then) - and then the outcome has changed (medication and doses etc).

My question is - is this normal?…. that it’s all a bit of trial and error as it’s all very individual - or is it that my GP and endocrinologist aren’t specialist enough? I feel like I’ve been messed around a bit since February now… on/off medication… different diagnoses, delayed specialist appointment etc…

Thank you for your time x

[Sally_at_APP]

Current T4: 21.3 (8.27 - 23.1)

Current T3: 6.54 (3.56 - 9.46)

Current THS: 0.127 (0.400 - 4.05)

I don’t have my antibodies tests results as I’ve requested a print out of all my results

[PurpleNails Administrator]

Results will be interpreted “hyperthyroid” if your TSH is low or FT4 / FT3 high. They usually occur together, but after a period of hyper your TSH might take time to rise or in some cases like me does ever recover and stays at 0.01.

TSH should not be used to judge carbimazole adjustments as it’s unreliable.

As for antibodies - TPO & TG can appear with thyroid autoimmune (under active & overactive) TRab or TSI is used to identify Graves. Antibodies can fluctuate greatly & do not always correlate to the severity of levels or symptoms currently occurring. Once a positive level has been recorded it’s evidence that autoimmune activity is happening & that is a “forever” diagnosis even if antibodies reduce & levels naturally correct.

30mg carbimazole is far too high a dose for moderately raised levels. Your FT4 & FT3 would have been quite low by 2 months.

Checking antibodies and rechecking levels before reaching this point could have prevented that. Stopping & starting carbimazole should really be avoided.

It is a balancing act with carbimazole & levels, but I also think doctors use that as an excuse for when we end up going too high or low.

Natural fluctuations can occur but If adjustments were carefully tuned to individuals & tests were appropriate frequent - eg 6 weekly. The management would be far better at preventing hypo / hyper.

Do you have a follow up blood test arrange for 6 weeks after re-starting your 10mg carbimazole?

[Sally_at_APP in reply to PurpleNails]

Hello, thank you for this. It’s really helpful.

The specialist phoned today and said as I’m still slightly hyper he has upped to 15mg per day and will re test my bloods in 4-6 weeks to check levels. Seems it’s all a bit of balancing act, but I do believe I shouldn’t have been on such a high dose to begin with and should have had my levels checked properly - but I think the GP panicked and out me in a high dose?

Hopefully things will calm down now!

Thank you for your advice and time

[PurpleNails Administrator in reply to Sally_at_APP]

How long have you been on 10mg carbimazole when last test taken?

Was this NHS?

FT4: 21.3 (8.27 - 23.1)

FT3: 6.54 (3.56 - 9.46)

THS: 0.127 (0.400 - 4.05)

The FT3 upper range seems quite high. You aren’t over range here. So I wouldn’t say you were “hyper”. It’s because your TSH is still low.

Lowering to mid range is a reasonable aim, but lowering until TSH rises isn’t.

if 10mg has lowered into range it might still lower & level out, by about 6-8 weeks you can judge this. Increasing might crash it down too fast.

[Sally_at_APP in reply to PurpleNails]

Hello,

Thank you. This wasn’t NHS, it was a hospital in France! So hard to compare with my previous results, plus it was only 2 weeks after I started the 10mg.

I understand what you are saying, the HPs seems quick to change things without looking at all the facts!! 🙈

[SlowDragon Administrator]

Previous post

healthunlocked.com/thyroidu...

What’s happened about your very deficient B12

You have had your 6 loading B12 injections

Are you now on regular B12 injections - how frequently

Have you had vitamin D and folate levels tested

As well as B12 injections are you now taking a daily vitamin B complex

Ferritin was also very low

Did you get full iron panel test for anaemia

[Sally_at_APP in reply to SlowDragon]

Hello,

Thank you for your reply.

I’ve had 6 doses of B12 and GP doesn’t think I need anymore… not sure how she knows that? I’m on B12 oral tablets now aswell.

Should I be getting my B12 levels checked again soon - she said not normally before a year? I feel so much better after having them though.

I haven’t had a full aeamia check, just ferritin, folate and iron. Is there further tests I should be asking for aswell as Vit D? I will ask my GP if it is possible to get this done.

Is it because having hyperthyroidism means you can’t absorb all the essential vitamins/nutrients, or is it something separate?

Thank you for you time,

Sally

[SlowDragon Administrator in reply to Sally_at_APP]

Both hypo and hyperthyroid Autoimmune thyroid disease trashes vitamin levels

So you are taking daily B12 …..anything else?

You will need daily vitamin B complex as well

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...

Low folate

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 maintain 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...

Many many thyroid patients find gluten free diet beneficial as can help with compromised gut function

[Sally_at_APP in reply to SlowDragon]

Thank you, I am only taking Vit B12, Vit D and Vit C… but will look into B complex with folate.

Thank you, all really helpful info

[SlowDragon Administrator in reply to Sally_at_APP]

Test vitamin D twice year

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

test folate, ferritin and B12 at least annually

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/getting-a-dia...