please help in tears - results in for markers PN1P 106 and CTX 0.5

[Chouchou1234]

please can someone help me

I’m having a panic attack and crying

Results PN1P 106 and CTX 0.5

I got them from the hospital by phone and not got my clinic letter as yet.

Long history which I will shorten for overview

48 and DEXA -3.4 lower spine

No periods for 15 years low bmi

I had no oestrogen for 15 years but one one said hey your bones! 🦴

Found out my t3 thyroid was 2.1 (4.1 to 6.8)

So was put on t3 thank god it was life changer

Meanwhile inwas bedbound and had no life for 9 years and no one checked t3.

on hrt now - ostrogen is 169 and progesterone is 20

Saw doctor at hospital a week ago did above tests

Ctx and PN1P

What does this mean?

im worries they will drastically cut t3 as started moving and living last few months - still exhausted

Please can someone help me

I’m seeing endo Monday but he’s a rude little man and worried they will cut medication

I spent years struggling and can’t go backwards

please help shaking with worry

thank you

[Fruitandnutcase]

Hello Chouchou, I’m sorry to hear that you are so upset. The Royal Osteoporosis Society have a free helpline that you could phone but unfortunately it isn’t open over the weekend. The Helpline is open Monday to Friday between 9am-12.30pm and 1.30pm-5.00pm.

Perhaps you could speak to someone before you have to speak to your consultant.

This ROS leaflet explains the test you have had done

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I know it is ridiculous to say it (I could get an Olympic Good medal for worrying) but try not to worry too much, you will only be in an awful state by the time you meet your consultant.

Before you go, think about what you want to ask him, make a list with a few ‘bullet points’ not too many though or you will lose him.

If you have anyone you could take with you for support it might be helpful for you, if he seems rude then he is less likely to be if you are not alone.

Remember you don’t have to do anything you really don’t want to do, you also don’t have to start any treatment you aren’t ready to start or stop . Even if the doctor is grumpy about it. Take your time before you make a decision. Could you speak to the endo who put you on T3 for advice?

Have you posted anything on the Thyroid U.K. part of Healthunlocked? You might be able to get more help on there.

In the meantime - try not to worry and try to speak to someone on the Helpline before you meet your consultant.

[Chouchou1234 in reply to Fruitandnutcase]

Thank you so much.

My last blood tests don’t show hyperactive thyroid - but having the PN1P is showing high turnover.

The problem is the endo is very dismissive and last time we had an argument as he didn’t want to raise my t3 when my level was only 4. 4.1 to 6.8

My liver markers were excellent last 2 times and when I saw the bone specialist she was not alarmed by anything. I have researched the upper level is 69 and I’m 109 .

Thank you again for the kind words and suppport.

I’m petrified they will take away the t3 medication and I’ll be back to being a vegetable in bed and in despair.

It’s only the past 2 months I’ve started to deal with the years and years of trauma. By being told I was a waste of space and disgusting as I was so tired and in pain and couldn’t eat when my t3 was 2.1 .

Thank you 🙏

[Fruitandnutcase in reply to Chouchou1234]

I can imagine how desperate you feel about even the remotest thought of losing your T3.

T3 is a lifeline for so many thyroid patients and yet it seems to be dismissed. In all the time I was being treated for Graves’ disease years ago I never ever had my T3 tested. In the end I started doing my own home blood tests because of that.

The HRT ought to help your bones so that’s good.

Is there anyone you can take with you to the consultation for support?

Good luck, I’ll think of you and send really good vibes to you on Monday 😉

[Chouchou1234 in reply to Fruitandnutcase]

Thank you. Unfortunately it’s me and me alone. X I’m a fighter just in the dark . Thank you again.

[Sleepman in reply to Chouchou1234]

Hope your feeling better today.Do let us know how you get on Monday if you can.

I know nothing about bones but yourT3 levels are not high so they should not even remove it.

I take 25 mg T3 a day from overseas and it is very low cost

My Mum's needs steroids at times to support her, we are finding out. Have they tested your adrenals. She has bad spells of hip pain.

She is autoimmune underactive with gluten issues the same as me.

[ROSModerator Partner]

Hi Chouchou1234,

We just wanted to drop by as it sounded like it was a really stressful time receiving the results you mentioned. As others have already noted, please don’t hesitate to look at our information on our website theros.org.uk/information-a... or call our helpline if you want further support.

We really hope that you find the support you’re looking for and wish you all the best,

ROS Moderator

[Chouchou1234 in reply to ROSModerator]

I’m in tears . No one can help!

My PN1P is super high

Why ?

Thyroid? Vitamins?

Please

Advise

[ROSModerator Partner]

Hi Chouchou1234,

Please reach out to our friendly specialist nurses on 0808 800 0035, they will be able to talk it through with you. We are unable to give to give clinical advice on our forums, so the best place to contact is our helpline as it's important you feel supported in your situation.

Many thanks,

ROS Moderator