Help with results please

[Becky56]

Hello All,

Please can someone help.

In

November my results came back ,my TSH 4 was high. I started taking carbimazole.

In December I had the antibodies test

Last week Jan I had another test and my TSH went down slightly. I don't understand the comment made on the results. Is some one can advise please

I have not been taking carbimazole twice a day as I was told ,I take 5mg once a day ,as I think when I take it twice a day I believe my heart palpitations get worse. I still do get heart palpitations

But I want to know if my results last week in Jan means I should maybe increase the carbimazole to twice a day?

Do you think TSH is on the really high side?

My doctor knows nothing and I'm waiting to see the endocrinologist (or whatever they are called) . I dont have an appointment yet booked.

I have asked my doctor I want to be tested for TSH 3

Please see my results attached,it seems like I can only attach one attachment. so I have copied my results below from the three blood test

Thank you

DATE 19-Nov-2024 !

FREE T4 - (SHI) - See ANP

! Serum free T4 level 33.4 pmol/L 11.90 - 21.60pmol/L

DATE 24-Dec-2024 !

TSHR RECEPTOR ANTIBODIES - (SHI) -

see notes

! TSH Receptor antibody 2.21 iu/L 0.00 - 0.40iu/L

Consistent with Graves disease and an increased

risk of associated eye disease. In women of child

bearing age specific monitoring for neonatal

Graves may be required.

Analysis performed at the Royal London Hospital

24-Dec-2024 ! Se thyroid peroxidase Ab conc - (SHI) - started

on rx

106 iu/mL 0.00 - 35.00iu/mL

Associated with autoimmune thyroid disease.

Associated with increased risk of other organ-

specific autoimmune diseases (e.g. Pernicious

Anaemia, Addison's Disease).

Date 24-Jan-2025 !

FREE T4 - (SHI) - See Dr Routine

! Serum free T4 level 28.6 pmol/L 11.90 - 21.60pmol/L

Provided the patient is not being treated on TSH

suppression therapy, and the T4 dose has not been

altered in the last 6 weeks, TFTs suggestive of

thyroxine over-replacement.

24-Jan-2025 ! Serum TSH level - (SHI) - See Dr Routine <0.01 mu/L 0.27 - 4.20m

[greygoose]

November my results came back ,my TSH 4 was high. I started taking carbimazole.

In December I had the antibodies test

I don't understand why you started carbi with a high TSH. That TSH is saying you're hypo, not hyper. Hyper would be very low/zero TSH. So, by taking carbi you're making yourself more hypo.

Were any other antibodies tested apart from TRAB?

[tattybogle in reply to greygoose]

looking at results , i presume it should say T4 not TSH 4

Becky , hi ,to clear up a bit of confusion :

TSH is Thyroid Stimulating Hormone which is a different thing to T4 (and T3)

TSH is a message from you pituitary gland to your thyroid gland asking it to produce more / or less thyroid hormones .

TSH goes up when thyroid hormones are too low.

TSH goes down when thyroid hormones are too high.

T4 (and T3) are the thyroid hormones , and the blood test for them is written as fT4 ~meaning free T4 ( and fT3 ~ free T3 )

your thyroid is producing too much T4 / T3 due to having Graves disease. and as a result your TSH is low ( not high )

[Becky56 in reply to tattybogle]

Ah ok thank you tattybogle . So when I ask for a blood test what should I exactly for to test?

[tattybogle in reply to Becky56]

a full thyroid function test is

TSH ( thyroid stimulating hormone)

fT4 ( free T4)

fT3 ( free T3 )

NHS can't/won't always do fT3 , but it's always worth asking, because knowing both fT4 and fT3 always gives a much better idea of what is happening than just TSH + fT4 does .

to confirm Graves disease is the cause of hyperthyroidism , they also test

TSH Receptor antibodies ( you will sometimes see this written as TRab ~ same thing )

but you've already had that test done ,and it's over range / positive (meaning you do have Graves disease) , so there is no need to ask them to do it again at present . ( it may need to be done again much later on in your treatment to check if these antibody levels have returned to normal before taking you off carbimazole)

regarding the comment on your latest results ..." Provided the patient is not being treated on TSH suppression therapy, and the T4 dose has not been altered in the last 6 weeks, TFTs suggestive of thyroxine over-replacement".

that part can be ignored , it is just a general comment applied to all thyroid results , which only applies if the patient is taking levothyroxine , which you are not . The lab doesn't always know who is taking levothyroxine when they do bloods, so they write it on all of them .

[tattybogle in reply to tattybogle]

p.s re. the dose of carbimazole . well your fT4 is still over range , so yes that does suggest that you need to be taking a bit more carbimazole than you are doing .

fT4 of 28.6 [11.9 -21.6] is definitely too high , but probably not high enough to be immediately dangerous ,

so to some extent it depends how you feel on the 5mcg dose you are taking. and whether taking 10mcg makes you feel worse or better.

but if you choose to stay on just 5mcg carbimazole until you get to see endocrinologist , you should definitely keep an eye on fT4 / fT3 levels every few wks, as you don't want them going much higher than that and left unchecked.

[Becky56 in reply to tattybogle]

OK then thank you

[Becky56 in reply to Becky56]

thank you so much tattybogle

[tattybogle in reply to Becky56]

tell gp you're only taking 5mcg and why , they can always phone endocrinology dept and ask them for advice before you are given endo appt .

[tattybogle in reply to tattybogle]

p.p. s

no need to be scared of taking propranolol ( from you reply to pennyannie it sounds like that is what endo told GP to prescribe ?

)it is what is usually prescribed in your situation , most folk on here who were hyperthyroid have had it .... it helps slow / calm palpitations down , and also helps lower fT3 levels a tad ,

my daughter just got prescribed propranolol for palpitations / anxiety (not thyroid related )and it helped her feel much better very quickly

[Becky56 in reply to greygoose]

Oh no thank you greygoose no only those

[greygoose in reply to Becky56]

OK

[pennyannie]

Hey there again Becky -

It looks as though your T4 has reduced a little from 33.40 in November to 28.60 in January -

Your TSH is still suppressed at 0.01 which is expected when you are with Graves Disease which you seem to be as you have a TSH Thyroid Receptor positive at 2.21 with a top cut off number of 0.40 :

You are only taking half the dose of the prescribed Anti Thyroid drug as you feel it gives you palpitations ?

There is an alternative AT drug - Propylthiouracil - that may suit you better -

Have you asked for a beta blocker for these palpitations - most patients get prescribed a beta blocker to protect their heart and Propranolol is the preferred drug as this also slows the conversion of T4 into T3 - and eases these horrible symptoms.

I think you may also have a diagnosis of Hashimoto's - another AI disease as mentioned on the December 24 results - and suggestions of testing you for Pernicious Anemia and Addisons - was any of this discussed with you and further tests have been ordered/actioned ?

Generally when the thyroid comes under attack from the immune system various sets of antibodies can be found positive but if with Graves TSH Thyroid Receptors is positive - treatment for Graves with an AT drug takes precedence, which has happened.

I wonder if you might feel better riding out this phase of Graves by being treated with

Block & Replace - as in this way the AT drug is increased to fully block your thyroid hormone production but a measured dose of T4 Levothyroxine is also prescribed to stop your T3 and T4 falling too far through the ranges and to keep you on an even keel at around mid point in the T3 and T4 ranges.

I remember writing to you before - and need to go back to see if I've missed anything out - so am closing this for a minute - as otherwise I lose all I've written.

P.S. So looking back I see i shared with you the most recent research suggesting that the longer the patient stays on the AT drug the better the long term outcome for the patient -

The AT drug is safe - and the alternative - definitive treatment - either a thyroidectomy or RAI thyroid ablation are not something to consider at this point in time as most people just have one phase of Graves and given enough time on the AT drug, the thyroid resets itself without the need for any drugs.

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

ncbi.nlm.nih.gov/pubmed/306...

You might like to read around on the Thyroid UK website - thyroiduk.org - as this is the charity who supports this patient to patient open forum -

For Graves Disease - elaine-moore.com - though sorry but I think Elaine's website off line at the moment -

and for Hshimoto's many forum members follow the research and advice of Dr Izabella Wentz who writes as thyroidpharmacist.com

[Becky56 in reply to pennyannie]

Thank you for the above pennyannie . The problem is when I speak to my Doctor he doesn't know anything.

when I complained about my heart palpitations he wrote to the Endocrinologist who said I need to be prescribed with phanapbol.(I cant remember the spelling)

But I am scared to take it.

I am getting fed up really, I just want to see the endocrinologist

I have not been given no further test for

Hashimoto's - Pernicious Anemia and Addisons -

[pennyannie in reply to Becky56]

I would think the ' can't remember the spelling ' medication is Propranolol as I mentioned earlier - so has it been prescribed and the problem more that you are scared to take it ?

Don't be scared - try the tablet as prescribed and hopefully your symptoms will be eased.

If there are other doctors working at your surgery, can you ask to see a different doctor ?

Can you take someone with you to the doctor's appointment, to support you ?

Well maybe an endo has to start these additional tests that I mentioned - I don't know.

Anybody would be scared suffering these palpitations and why you need to take the beta block to stop the palpitations and protect your heart and you also need to take the AT drug to semi-block your T3 and T4 levels from rising any higher.

Have you been given a time line for when you'll be able to see the endocrinologist ?

Some forum members have been lucky after contacting the endo's secretary and been given cancellation appointments, and have just a few weeks to wait - and it seems the NHS system is totally backed up throughout the country with some people waiting around a year - which is totally unacceptable - but the reality.