latest bloods - graves/ptu

[Kiki_76]

hi

diagnosed with graves few months ago. Originally tried carbimazole but came out in a bad rash everywhere. Now on ptu 50mg twice per day but have halved to once a day since having pins and needles from knees down. Still experiencing anxiety, some hot flushes, irritability, palpitations. (Have lost 2st thru calorie deficit diet since March to hopefully help with symptoms)

Bloods taken 10am today on empty stomach

TSH normal is 0.27-4.2 = 1.4 (First time normal since regular testing began last summer)

Free T4 normal is 12-20 = 16.8

Ferritin normal is 13-150 = 221

B12 normal is 197-771 = 357

Folate normal is 3.9-26.8 = 5.7

Vitamin D takes longer for results to come back. GP requested t3 on same form, is that TSH or is it just not included here? Sorry!

Thanks

[tattybogle]

No, TSH is Thyroid Stimulating Hormone.

fT3 result is not there... lab may have overruled request and not done it ,, or it may appear in a little while (sometimes fT3 results take a little longer to come back)

[Kiki_76 in reply to tattybogle]

Thanks. Yeah I’ve just realised the nhs doesn’t test it apparently. Cheapest I’ve seen it online is £29 might just try that

[pennyannie]

Hey there again :

Seems you are still tolerating many symptoms and the AT drug not relieving much - though hopefully working on your T3 and T4 levels - but again we haven't a T3 reading !!

Did you stop the Propranolol as your doctor thought this a problem ?

Your ferritin is way over range - maybe this needs investigation -

Ferritin can be raised because of inflammation - do you have any CRP readings there ?

I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.

I'm not sure losing 2 stones since March through knowingly making yourself calorie deficient a good idea -

You are not well - your thyroid and body are being attacked by your own immune system, your thyroid malfunctioning and your metabolism being controlled by the AT drug -

and you need to be replenishing and replacing core strength key nutrients with good wholesome food, good fats and calories.

[Kiki_76 in reply to pennyannie]

Hi thanks for replying.

I’ve realised since posting that the nhs doesn’t do t3 testing. Didn’t stop the propranolol no.

I think my gp put the raised ferritin down to the graves and suggested just watching it while the ptu kicks in.

but I’ve halved the ptu off my own bat as I honestly am really concerned by these pins and needles from the knees down. I’m worried it’s permanent. It hasn’t really lessened since going from 2 x 50mg ptu to 1.

I think my latest bloods are a tad more positive than a month ago but symptom wise still have anxiety which is kind of being fuelled by this tingling sensation. I’ve started 5mg escitalopram as a result.

[pennyannie in reply to Kiki_76]

I'm sorry but I think you need to get some reassurance about what is causing this sensation of pins and needles - suggest you try and get an urgent appointment back in endocrinology where you will get a full thyroid panel run.

Maybe you need to be on Block & Replace whereby the AT drug fully blocks your thyroid hormones BUT a dose of T4 - Levothyroxine is also prescribed so your T3 and T4 do not fall too far through the ranges causing the equally disabling symptoms of hypothyroidism.

From memory your T4 has been low in range since January which likely means your T3 is too low in its range - and you also had positive Hashimoto's antibodies - so you might feel more comfortable with less symptoms if put on B & R ?

[Kiki_76 in reply to pennyannie]

Hi just spoke to my endo consultant. He told me to stop the ptu for a week to see if the pins and needles stop. He said he hasn’t heard of anyone having them as a result of ptu in 20 years! He said it’s definitely graves due to anti bodies and that there’s no goiter and the ink uptake test was fine. He said to see gp for other possible causes such as diabetes. So fed up with it. He mentioned operation or the dye/ink procedure, sorry forgotten the terminology as only other options as I obviously can’t take the Carbimazole. My last bloods were ok, is there no chance of it settling on its own? Thanks

[pennyannie in reply to Kiki_76]

Did you ask the endo about trying Block & Replace ?

We do have positive Graves antibodies don't we - save me looking back ?

If so there is just the AT medication which ' buys you time ' while we wait for your immune system to calm down and your thyroid hopefully reset itself without the need for any medication.

I think I've sent you all the following already :-

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

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

otherwise start reading up on Elaine Moore - books and now website where I've seen a section on more holistic and alternative treatment options - elaine-moore.com

[Kiki_76 in reply to pennyannie]

Yes he said it’s definitely graves due to the antibodies. Thanks for replying. Feeling so lost and clueless with it all. The tingling is obviously intensifying the anxiety. I’m speaking to him again next week after I’ve stopped the ptu for a week. I’ll mention B&R then. And I’ll get tested for diabetes in the mean time. Or see if my gp can think of anything causing the pins and needles.