Update

[Josie2]

Hello everyone. Just a little update but first of all I’d like to thank you all for your help over the last few days whilst I was having a meltdown.

I’ve had my bloods done this morning before I took levothyroxine but they wouldn’t test for vitamin levels, just calcium & thyroid levels.

I had an appointment this afternoon & went in well armed with questions I had written down plus my husband to help me. My doctor was really good and listened.

The doctor said the last thyroid levels that they had were from May and because I had been sent private they don’t know what my pre surgery levels were. He said all my symptoms were from too much levothyroxine & I was tripping . He said my body will have still been producing thyroxine until my operation & he said it’s overloaded my system. I had reduced it from 125 to 100 & felt a little better. He has said he wants me to reduce it to 50 to see if my symptoms go. He said that if it needs increasing he can do it bit by bit once my blood tests are back.

Thank you all again. I’ll keep you posted on how I am.

[GlowCoach Administrator]

What were your thyroid blood results? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

50mcgs is just a starter dose of Levo and not likely to be enough for you unless you're a small person?

Can you tell me your weight in kilos? Theres a calculation to work out approx how much Lvo you will need. 1.6 x weight in kilos = Levo dose (not entirely accurate but a guide)

Suggest you buy a private test for your vitamin levels. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

[Josie2 in reply to GlowCoach]

Yes I’ve got the nhs app but my bloods were only taken this morning so don’t have results back yet. I’m ok with increasing from a low dose, I think I just had too much in my system. I wasn’t previously on anything prior to thyroidectomy so was probably producing thyroxine until day of surgery. I’ll certainly have a look at a private test for vitamin levels, thanks, I didn’t know you could do this.

[greygoose]

'Tripping'? It's thyroid hormone, not LSD! What on earth did he mean?

I think it rather bold of him to assert that your dose was too high without seeing blood tests. Reducing to 50 mcg seems a little drastic to me. As a general rule, one shouldn't decrease by more that 25 mcg every six weeks. I'm not sure this man knows what he's doing, so be very careful.

[Josie2 in reply to greygoose]

I will be careful, thank you.

[greygoose in reply to Josie2]

You're welcome.

[Josie2 in reply to greygoose]

Am I ok to post my thyroid blood results once they’re back as I really am clueless.

[Hedgeree in reply to Josie2]

Yes 😊

When you post make sure to have the ranges as well. So others can see where your results are within the ranges.

Also best start a new post too.

[Josie2 in reply to Hedgeree]

Thank you

[Hedgeree]

Hi Josie,

What did the GP say about the tingling in your fingers and lips? Did you ask about your parathyroid glands?

[Josie2 in reply to Hedgeree]

He said they were tingling due to too much thyroxine. I’ve still got my parathyroid glands.

[Sparklingsunshine in reply to Josie2]

Well he's just pulling excuses out of his a$se at this point, rather like a magician pulling scarves from a hat. Tingling can be caused by a variety of things, from low ferritin, B12 or calcium to neurological problems like peripheral neuropathy or diabetes.

He doesnt actually know what the cause is but rather like Pandora's box he's blaming all your ills on the fact you might be overmedicated. Without taking anything else into account.

Which again is just guesswork on his part. And I've heard some corkers on the forum over the years but tripping on Levo is a new one. Dont tell anyone or they'll all want some 😆

[Josie2 in reply to Sparklingsunshine]

To be honest this is all new to me so I don’t really have a clue.

[greygoose in reply to Josie2]

And he's taking advantage of that to gaslight you. He hasn't got a clue!!!

[Shellian in reply to Josie2]

You've still got your parathyroid glands but he's no idea if they have been 'stunned' or damaged during your TT. But Doctor's don't really know much about parathyroids at all ( and very little about thyroid sometimes). I feel that he should've waited until you have your results before making a decision to reduce your meds. Maybe only reduce by 25mcg. 50mcg is probably too much of a reduction, especially when you have no thyroid at all. Shouldn't take long for you to have access to your results. ( 3 days top?) I would ask for a print out and begin to keep a log of all your levels for everything with a note on how you are feeling. That way you can begin to see a pattern of when you feel well to find your optimum levels. Think you will need to become your own advocate as many of us on this site have had to be.

Good luck

[Josie2 in reply to Shellian]

My doctor is NHS but I was sent private for surgery and nhs don’t give access to private surgery even though they sent me private. Bit silly really.

[Hay2016 in reply to Josie2]

You can ask for the private lab to email results to your gp. Just get the gp email address first. X

[Ontherun81]

So that's good to hear Josie2! Just get that same Dr next time😉xx

[Josie2 in reply to Ontherun81]

Thank you.

[FallingInReverse]

When we are at the “have no clue” phase, it’s a good idea to provide this forum with your blood test results.

Your doctor not only has no clue, but he’s pretending to know things that no human can know without seeing your blood test results.

The exact results, ranges, date/time, and confirm that your last Levo dose was 24 hours.

Your calcium numbers are essential here obviously too.

And maybe I’m off base - but aren’t you also experiencing possible RA symptoms now that you’ve been off your RA meds for over a month?

Brilliant answers from everyone above!

[Josie2 in reply to FallingInReverse]

I can’t provide blood test results as I haven’t got them back yet, they were only taken yesterday. Once I have them I will post. I have posted previous results but these were back in May prior to surgery. I was sent private for operation and the nhs don’t share with private hospitals, stupid I know. Yes I’ve been off my RA injections since beginning of July so have been flaring.

[FallingInReverse in reply to Josie2]

I’m glad you’ve received so many responses. Bring hypothyroid can feel so mysterious and confusing (and scary because we feel so bad.)

But I promise it won’t take long for the confusion to clear up. Even though it takes a while to feel better, when you understand what’s happening in your bloods and body - it’s an incredible sense of peace.

We look forward to your results when you’re able to share! Hang in there!