Graves Disease blood results can anyone help pl... - Thyroid UK

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Graves Disease blood results can anyone help please

hattersteapar profile image
11 Replies

So I have been on block and replace since 2017. I have just had some blood results back and as I have an upcoming consultant appointment would really appreciate some thoughts on the results

Free T3 4.4 pmol/L range 3.5-6.5 pmol/L

TSH 3.92 mU/L range 0.35/5.50 mU/L

Free T4 16.2 pmol/L range 10.5 - 21.0 pmol/L

Thyroid stimulating immunoglobulin 0.80 iu/L range <0.56 iu/L

Thank for your time

Just edited the range on the free T3 result.

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hattersteapar profile image
hattersteapar
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11 Replies
PurpleNails profile image
PurpleNailsAdministrator

Free T3 4.4 pmol/L range 8.5-6.5 pmol/L9. - is that range correct?

hattersteapar profile image
hattersteapar in reply toPurpleNails

Gosh sorry, can't read my own results

The range should be 3.5-6.5 pmol/L

Thanks for pointing that out

ling profile image
ling

Results are in range except for TSI slightly high. How do u feel? Doing well overall?

Valarian profile image
Valarian

How much medication are you currently on (carbimazole and levo ?) Do you have your previous results ?

Your antibodies are still positive, although not by a huge amount. However, this might indicate that your thyroid levels wouldn’t remain in check without the carbimazole.

Your TSH has obviously recovered, which is good because it can remain suppressed for a long time. (Long term suppression of TSH may also be associated with reduced likelihood of remission).

TSH of 3.92 together with FT3 and FT4 being below the midpoint of the range may suggest your medication needs adjusting, especially if FT3 and FT4 are trending down and TSH up - so possibly an increase in levo or reduction in carbimazole. Are you experiencing any symptoms at the moment ?

Has your endo ever stopped your medication to see whether your Graves’ is in remission ?

Lora7again profile image
Lora7again

I think your TSH is a little too high myself and your medication might need adjusting. I would ask Elaine Moore about it because is a an expert on Graves' disease.

Here is a link to her site.

elaine-moore.com/

pennyannie profile image
pennyannie

Hello Hattersteapar

I can't offer much in regards to your current results, and merely asking, how are you currently feeling ?

If you don't know of the Elaine Moore Graves Disease Foundation website might I suggest you dip in when you have more than a " minute " .

I'm with Graves post RAI thyroid ablation and have learnt of my situation back to front, becoming very unwell some 8 years post this treatment.

I now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicate as the NHS currently, routinely, only treat hypothyroidism with Levothyroxine and this medication hasn't restored my health and I deeply regret loosing my thyroid to an auto immune disease.

hattersteapar profile image
hattersteapar

Thank you everyone, I will try and answer all the questions

My consultant said if my antibodies were low enough we would look at stopping treatment., to see if I go into remission

My last test results weren't complete but that's another story.

Feb 2020

TSH 4.84 mU/L range 0.35-5.5 mU/L

Thyroid stimulating immunoglobulin 0.75 range <0.56

I currently take alternate days of levothyroxine 100mg then 125mg

I take 40mg of carbimazol this level of dosage for both has not changed since the beginning of 2018 I would think

I must admit the consultant has been quite understanding and does not even mention RAI or the like

Thanks again for sharing your advice and stories

I feel pretty good most days and find I can get on with most things without any worries,

Sorry carbimazol is 40mg a day

Valarian profile image
Valarian in reply tohattersteapar

The good bit about B&R is that your thyroid levels are more likely to remain stable throughout treatment.

The downside is that coming off the medication is a step into the unknown.

The carbimazole dose is usually kept high during B&R, to suppress natural thyroid production pretty much completely. Usually people are only on this level of medication for 12-18 months.

TSI has obviously come down a bit which is good.

Good luck !

asiatic profile image
asiatic

That's a hefty dose of Carbimazole. I have never heard of anyone being on more than 60mg. I would want to start reducing that to check if such a high dose is necessary and to check for remission.

Alexkjones profile image
Alexkjones

Hi. I have graves. I aim for a tsh if 1,3 ish for my happy place. I get all sorts of symptoms If my tsh goes over 2. I had a nightmare coming off of block and replace to try for remission. I was too under active when we with drew the meds and my adrenal system picked up the slack sending me Adrenalin shots all the time. It took about 3 months to settle everything down. Now on titration method 5mg Carbo a day. Good luck managing your graves and you can always come and ask questions on this forum If you need to. Alex

Fruitandnutcase profile image
Fruitandnutcase

That does seem a long time to be on B&R. I was told that block and replace was the fast way to treat Graves and my treatment lasted exactly a year.

I started on 20mcg carb and was tested again after four weeks. There was no real change so my endo wrote to me telling me to ge more carb and increase to 40mcg a day.

I did that and ended up hypo by the time I saw my endo - that was three months after starting the carb and with no further blood tests after I started on 40mcg

I stuck with the 40 all through treatment and added I levo until I was taking 100/125 mcg on alternate days although I ended up taking the 125 most days.

Once on that routine I had blood tests done a week before I saw my endo then a year almost to the day the endo said that I could stop all meds - right away. No tapering off or anything - one day it was 40mcg carb and 125 levo - next day nothing.

You are very lucky your endo isn’t offering RAI - I was told about that almost right away - even though I told everyone who offered I didn’t want it.

I eventually went totally gluten free a year or so after I went into remission - I developed inflammatory arthritis - yet another autoimmune condition and I found that my thyroid antibodies plummeted.

I test regularly with Medichecks home fingerpick tests to see what is happening.it could easily be that they would have reduced naturally and that it was their time but I tend to think it was cleaning out my diet and cutting out gluten. I certainly wouldn’t go back to eating gluten again. My IBS has improved massively since going GF too so it’s wirth the effort.

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