TSH out of range: Hello, I have graves disease... - Thyroid UK

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TSH out of range

allyemanny profile image
8 Replies

Hello,

I have graves disease although have been in remission for 6 months (taking no carbimazole)

Hope for some advice re: the results I've had from a recent blood test done at my GP.

TSH = 0.09 (0.3 - 4.4)

FT4 = 13.4 (9-19.1)

Obviously the FT4 is ok, but TSH is out of range.

I have been feeling generally ok, bar a bit of nausea and and sniffles I put down to hayfever. I'm feeling quite nauseous today but I don't know if that's because I'm thinking about it too much!

My weight seems fairly constant and resting heart rate is unchanged.

I spoke to my GP today who will write to my Endo for advice. She suggests that it'll take 1-2 weeks to hear back.

I'm wondering if I should push to start again on the carbimazole? The last blood test is already 2 weeks old and my GP says they cannot test again for 8 weeks. I was considering getting a private test done (e.g. medichecks - thyroid ultra vit check).

Any advice much appreciated.

Al

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allyemanny
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8 Replies
Valarian profile image
Valarian

Do you know what your last set of results were ?

As you say, FT4 isn't high enough to suppress your tsh (although it's still measurable). FT3 could have taken off first, but without a test, there is no way of knowing. A specialist may be able to order this test if there is anything left from the initial draw, or simply order another test (specialists shouldn't need to wait 8 weeks ).

Since you are feeling ok, I don't think I would mess with carbimazole just yet. Obviously, if you begin to experience hyper symptoms, it's different.

Greekchick profile image
Greekchick

Hi Al,

I would suggest a full thyroid panel including antibodies - you do it show T3 and this reading is a critical one. Without that reading and your antibody for Graves, we can’t say whether or not you should start back on carbimazole. If you have the T3 and antibody results, please post them. I myself am Graves and 5 months post TT.

Also, some people on this forum have gotten good results for Graves remission with diet and lifestyle changes - see fruitandnutcase posts for her experiences with this. pennyannie and ling have excellent posts on managing Graves and therapy suggestions as well.

Others will recommend vitamin panels too - please check posts of SeasideSusie and SlowDragon for the full list. Wishing you all the best today.

ling profile image
ling

Were your Graves antibodies, TRAb, TSI, ever tested to confirm Graves?

FT3 was not tested 2 weeks ago?

If getting retested, you should have your antibodies and FT3 tested as well.

allyemanny profile image
allyemanny in reply to ling

Thanks for all responses

FT3 does not seem to be tested as part of the thyroid function test at my GPs.

I was told verbally by the Endo that antibodies have been tested.

Am thinking I might pay for the medicheck test just for peace of mind.

greygoose profile image
greygoose in reply to allyemanny

You need to know which antibodies. Endos tend not to know the difference between Grave's antibodies and Hashi's antibodies. :(

Valarian profile image
Valarian in reply to allyemanny

depends when the antibodies were tested, and which antibodies - for Graves', you need either TSI or TRAb. If they were last tested when you came off carbimazole or when you were first diagnosed, that isn't an indicator of what they are now.

Both FT3 and Graves' antibodies tend to be specialist order only, so your GP may not be able to order them. if you are receiving treatment at a thyroid clinic, they can however normally write an order to be drawn at your GP surgery.

While in remission, they normally leave it to your GP to test TSH; depending on local lab instructions, FT4 (but not usually FT3) may then be tested automatically if TSH is suppressed. (I think there were some recommendations about this in the latest NICE thing posted a week or so ago, but can't access it right now...and obviously that would be for the future anyway).

Valarian profile image
Valarian in reply to Valarian

so as I said, this is in the new draft guidelines:

P8 says, 'when thyroid dysfunction is suspected.... If the TSH is below the reference range, measure FT4 and free tri- iodothyronine (FT3) in the same sample.'.

P49 says 'for those with conformed thyrotoxicosis...Differentiate between thyrotoxicosis with hyperthyroidism (for example, Graves’ disease or toxic nodular disease) and thyrotoxicosis without hyperthyroidism (for example, transient thyroiditis) in adults by:

• measuring TSH receptor antibodies (TRAbs) to confirm Graves’ disease

• considering technetium scanning if TRAbs are negative.'.

SilverAvocado profile image
SilverAvocado

Allyemanny, I think a Medichecks or Bluehorizon test is a good idea. You desperately need to see freeT3.

It blows my mind what doctors think they are doing with these inadequate thyroid panels. I should be used to it by now, but it really is negligent.

I think there could be two interpretations of that low TSH.

1) For some reason your freeT3 is high, despite a pretty optimal freeT4 result, and it's the T3 thats pushing TSH low. This sounds a bit unlikely to me, but unusual results do happen.

2) Your TSH response is not right. There's a lot of individual variation in how our TSH responds, and having had Grave's can be disruptive in itself. It may be that both freeT4 and freeT3 are fine, but your pituitary is not producing the right amount of TSH. This may be completely fine, or it might indicate your pituitary is starting to play up.

It would be nice if doctors knew anything about any of this :( If you do have a pituitary problem, it will impact other hormones, so it would also be nice to have that investigated.

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