Newly diagnosed, ordered private bloods when be... - Thyroid UK

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Newly diagnosed, ordered private bloods when best to do?

Cloudcupcake profile image
Cloudcupcake

Hi posted yesterday that I have t4 3.1 and TSH >150 started on 50mg levothyroxine last Friday, feel pretty dire still and worse than before diagnosis. Doc dismissed any T3 and antibody chat yesterday so have decided to be proactive and get full thyroid check myself and have ordered some probiotics and vits. Wondered if I be best to hang fire on doing the tests until I've been on the levo for a few weeks, any advice appreciated. TIA

7 Replies
shaws profile image
shawsAdministrator

We do feel worse when first starting on levothyroxine, My TSH was 100 and I know how surprised I was when nothing improved at all and I actually felt worse (I'm fine now but it was a bit of a journey).

However, due to it being 'hormones' we lack these have to be introduced by 25mcg every six weeks (starting dose 50mg) until we begin to get some relief.

I think I'd hold fire just yet as many do recover on levothyroxine, so you've got to give it sufficient time for it to kick in although I know it seems like forever. You will then have a bigger picture of whether you convert T4 - levo (inactive) into sufficient T3 - and T3 is the only Active thyroid hormone which is required in our millions of T3 receptor cells.

If you've not had B12, Vit D, iron, ferritin and folate tested, ask for these as they can be tested along with thyroid hormones.

shaws profile image
shawsAdministrator

All blood tests for thyroid hormones have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take aftrwards. This helps keep the TSH at its highest as that's all doctors seem to look at whilst ignoring (don't know any) our clinical symptoms and it is the symptoms which have to be relieved and eventually a TSH of around 1 or lower with a Free T4 and Free T3 in the upper part of the ranges. The latter two are rarely tested in the NHS so you can have those privately later on.

I always make my appointments for blood draw about six weeks ahead as it is difficult in my surgery to find a suitable spot and we want the earliest. I doubt doctors know there is a circadian rythmn for TSH.

Cloudcupcake profile image
Cloudcupcake in reply to shaws

Thank you, I'll keep a hold of the kit I ordered until I get well under way with tablets then, cheers

SeasideSusie profile image
SeasideSusieAdministrator

Cloudcupcake

have ordered some probiotics and vits.

What vitamins have you ordered? Have any vitamins/minerals been tested? You shouldn't take any until you know your current levels, that will tell you if you need to supplement and at what dose. Supplementing when not necessary will cause problems if it's a fat soluble vitamin where excess gets stored. Supplementing iron when not needed will cause problems. Taking anything before testing will skew results. Tests always advised here

Vit D

B12

Folate

Ferritin

If you have ordered the Medichecks Thyroid Check UltraVit or the Blue Horizon Thyroid Plus Eleven then all those tests are included.

Think that's what I've ordered, hopefully, better check!!

It's going to take time to feel good with TSH that high and t4 SO low.

I started feeling difference about two weeks after taking meds however soon after started having massive slumps and got panic attacks and had to increase.

You will need to increase from 50 at some point as it is not enough (for failed thyroid and yours is failed unfortunately) to get to t4 levels in range.

I'd concentrate on having your bloods tests done as often as possible with the surgery (I used to do it every 4 weeks first 4 months) and increase appropriately. Don't wait or stay on 50mcg for months on end like some people are made to do as it'll only prolong your suffering.

Ask for endo referral and they'll do all antibodies and other essential hormones tests i.e. cortisol - very important.

What were your symptoms before diagnosis?

Hi tre thanks so much for your response. I went to docs because my periods stopped and I was really tired and grumpy, friends convinced me I was peri menopausal so had been getting on with it but I felt weird/spaced/not with it is best I can describe and now I know the various things caused by hypo it explains a lot and I actually think i've been really unwell for a while. i've had carpal/ulnar problems, hip pain, numb back, work has been terrible I start things and never finish them, struggle with words often - if you knew me this would be worrying haha! burning sensation in left foot and major digestive issues, pain in right flank and the last few months around what should have been menstrual cycle really sick and nauseous. Most worrying for months now has been my intolerance to alcohol - one or two and I was anybody's and hangover from hell for days as well. have stopped drinking now obviously until I get my sea legs back. I have had a very stressful year and its so easy to just put everything down to stress/anxiety! onwards and upwards really hoping to get my mojo back soon x

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