Time to glance over my blood test results? 7 weeks into treatment for Graves...

[HannahStevenson]

Hi all.

I was diagnosed with hyperthyroidism on the 14th July this year. Put on 30mg Carbimazole once a day and 40mg of Propranolol 6 times a day. Below are my bloods results 4 weeks apart.

T3 14/7 - 34pmo/L 13/8 - 6.5pmo/L (3.1-6.8 normal range)

T4 14/7 - 58.2pmo/L 13/8 - 20.7pmo/L (10.0-23.0 normal range)

TSH 14/7 - 'unrecordable' 13/8 - 'fully suppressed'

TRAb 14/7 - 20.69 13/8 - 23.41IU/L

Anti-TPO Antibodies 13/8 - 196U/ml (normal range 0-33)

My B12 level was on the low end but improving with supplements currently 485ng/l (13/8)

My vit D level has improved with supplements currently 92nmol/L (normal range 50-175)

My white blood count has been on the low side: 14/7 - 4.3, 13/8 - 4.9 (normal range 4.0-11.0)

Serum total Bilirubin level slightly raised on 13/8 at 22umol/L (normal range 0-21)

Ferritin and Folate in normal ranges.

After seeing my endo following the 2nd results he has diagnosed Graves disease and has advised to cut down propranolol to 3 then 2 a day then even less. Weaning slow (currently on 3 a day)

And cut carbimazole to 20mg a day until I see them next.

Repeat bloods and consult in a further 6 weeks time...

It would be very reassuring to have anyone who has any time to let me know if this all sounds like the right treatment plan and anything that might need flagging.

Also trying to eat a healthy diet and limit work stress.

Thank you thank you!!!

[Valarian]

Hi Hannah

Both FT3 and FT4 have responded well, which is good, although FT3 especially is still quite high in range. TSH can often take longer to recover, your endo will be changing the dose of your medication based on FT3 and FT4 rather than TSH. If TSH remains persistently low, there is a school of thought it may indicate a lower probability of achieving remission, but it’s still early days for you.

Titration (reduction) of Carbimazole is usually gradual, as the last thing they (or you !) want is for thyroid levels to take off again. Your endo will be tracking the graph of your results over time as well as the point results. Going down to 20mg/ day seems reasonable - hopefully enough to keep thyroid levels on a (decelerated) downward trend, without being too much of a reduction.

It does seem a bit odd that your TRAb has increased (although not by much), but most of us don’t have that tested every time, so I don’t know how common this is. Given your endo has gone to the trouble of testing it again, it would be worth asking them whether they thought the slight elevation was significant, or whether this is just within the normal fluctuations they would expect to see.

The propranolol is usually prescribed to help with symptoms such as a thumping heart rate, breathlessness and tremor. These usually begin to subside as thyroid levels come down, in which case, unless there is any other reason for continuing it (eg you have high blood pressure), you may not need it any more. With such high FT3 results when you were first diagnosed, you may have been feeling pretty unwell, so hopefully things aren’t quite as bad now.

6 weekly testing regime is about right- gives some time to see if the change is having the desired effect. If your symptoms come back, or if you begin to feel an entirely different set of symptoms (eg you were too hot all the time and are now too cold), you can always ask for the test to be brought forward

Reducing stress is definitely the way to go...as I have Graves myself, I do appreciate this maybe easier said than done !

I can’t comment on the vitamins, someone like SeasideSusie may be able to help... but being hyper speeds up the entire metabolism including the digestive system, so it can be difficult to get vitamin and mineral levels back to normal until your thyroid is a bit more stable.

Good luck

[HannahStevenson in reply to Valarian]

Thank you so much Valarian

I so appreciate your reply!

All the best to you x

[Manz123 in reply to Valarian]

Hi Valerian,

Please can you say more about persistently suppressed TSH reducing likelihood of remission? I was diagnosed with Graves in 2012 and have been treated with Carbimazole and PTU and various times as I've had several episodes of hyperthyroidism. My TSH has pretty much always been suppressed since diagnosis. I was told by an endo that the TSH is "irrelevant" but it must mean something that even when my T3 & T4 are within range my TSH stays suppressed. Any advice gratefully received.

[Valarian in reply to Manz123]

Hi Manz,

No advice, but here are a few articles you may find of interest. I began looking into it because after months of scarcely looking at TSH when reviewing my thyroid results, my consultant commented that if I was likely to achieve remission (after a couple of years on carbimazole), they would have expected my TSH to have shown more signs of recovery. However, this appeared to be based on his experience rather than supported by research.

Some research shows a link between persistently-suppressed TSH and TRAb levels remaining high...also TRAb levels remaining high and failure to achieve remission...the suggestion is that TRAb is instrumental in TSH suppression.

Since TRAb isn't routinely measured during treatment - or even when stopping treatment - it would need funded research. What would they then do with that knowledge ? It might tell them that for certain patients, there would be little point in continuing treatment with carbimazole as remission was unlikely, but most of us would still wish to continue. ...it would be useful if it could show that remission would definitely occur once TSH had recovered and TRAb were non-existent, especially if it could be demonstrated that we would all reach this point eventually, but the current research doesn't seem to be saying that either !

That said, there does seem to be quite a lot to suggest that if TSH remains suppressed and TRAb high, remission is at best less likely...I guess this might help swing an individual decision towards RAI or TT rather than long-term carbimazole.

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/176...

ncbi.nlm.nih.gov/pmc/articl...

thyroidmanager.org/2007/02/...

academic.oup.com/jcem/artic...

endocrine-abstracts.org/ea/...

Any other contributions to this discussion welcome !

[Manz123 in reply to Valarian]

Thank you, I'll have a look at those articles. I've had my TRAb measured a couple of times and its not always high, but my TSH remains suppressed. Interesting. I'll do some more research.

[pennyannie]

Hey there again

Yes, this looks pretty good, your T3 and T4 are down, and hopefully you are more comfortable in yourself.

Don't trust the words " normal " any more - my ferritin needs to be up at around 100 and my folate at 20 - am I in good company here ?

Generally speaking, how are things with you ?

I seem to remember you were having problems with your eyes ?

Yes, limit work stress, in fact, limit anything that you know doesn't sit well with you :

[HannahStevenson in reply to pennyannie]

Hi pennyannie

I am certainly feeling much brighter which is great. Also besides everything else, it was really the coming to terms with it all. It was quite a shock really. I have never ever had any sort of health condition and just wasn't expecting it!

My ferritin was 113 ug/l and folate was 12.3ug/l... So I guess they both could be a bit better still.

Well remembered! My eyes are ok. I went to the opticians and they said I had a slight stigmatism in both eyes so have got glasses now which I think are really helping - especially with looking at screens. Still not quite right but apparently no sign of TED so that's good.

I am being kind to myself and taking great comfort in all this wonderful advice from you all x

[pennyannie in reply to HannahStevenson]

Hey there,

Glad to read you feel better than you were.

Yes, it does take time to register and understand the implications of this autoimmune disease.

There is probably some genetic predisposition to Graves and it is said to be stress and anxiety driven and read it can be triggered by a sudden shock to the system like a car accident or unexpected death of someone close to you.

I only read all this 10 years after my diagnosis and RAI thyroid ablation through Elaine Moore's first book, and looking back around 4 months prior to my diagnosis I was physically threatened and verbally abused by a work colleague and in the middle of the disciplinary action.

[HannahStevenson in reply to pennyannie]

It's so interesting isn't it. We are so fragile and need to be so in tune with our mental health. It can have such an affect on the rest of our bodies...

Take care and speak soon. Hannah