Nurse phone call update: I put the results of my... - Thyroid UK

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Nurse phone call update

34 Replies

I put the results of my thyroid and cholesterol blood test result on here the other day and today I heard back from the nurse who said my Thyroid was fine “within the range” the usual thing. but my cholesterol was very high at 8 which I knew.

So, as always, just concentrating on my cholesterol levels.

My risk of a stroke or heart attack in the next 10 years has also gone up from 6 to 7 but as it’s below 10 I’m still low risk.

I argued yet again about thyroid and raised levels of cholesterol but she said “ “ there’s nothing wrong with your thyroid”

I told her I had been on here and the suggestion indicated that I was under medicated.

She then said “on what grounds do they think that” and I said my high cholesterol.

Any way she got very defensive and said she wasn’t going to argue with me and then I told her that I was going private.

The consultant Id like to see needs a GP referral, which I’ve asked for, and the nurse said, yes I see you asked for that and I will do it this afternoon.

I had to tell her of symptoms I was getting because I feel she doesn’t understand the thyroid/ raised cholesterol situation.

She has now made me feel that I’m getting neurotic about this and she really put my back up.

I didn’t mention an increase in levo to see if I that would bring my cholesterol down because I was so annoyed with her.

So I’m taking the private route and hopefully get this sorted.

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34 Replies
TiggerMe profile image
TiggerMeAmbassador

Infuriating!! Why is a nurse dealing with this? I would complain to the practice manager as you are being let down badly 😕

in reply toTiggerMe

Thank you for your reply Eeyore100.

Yes very infuriating !😠

Sparklingsunshine profile image
Sparklingsunshine in reply to

"Blah blah blah, thyroid in range, cholesterol too high, now let's put you on statins, blah blah". Good for you, standing your ground 😁. You deserve better treatment than this.

in reply toSparklingsunshine

Thank you for your reply.

Yes you’re right I do and hopefully will get that going private.

Hedgeree profile image
Hedgeree in reply to

Hi Love-purple,

Was she a nurse practitioner? My understanding is they can prescribe so maybe that's why you were seen by a nurse? 🤔

in reply toHedgeree

Yes I think she is a

Nurse practioner but I’ve never actually seen her about my thyroid. It’s all done over the phone.

Blood test done by a different nurse

Hedgeree profile image
Hedgeree in reply to

She's not been any help either way 🙄

FallingInReverse profile image
FallingInReverse

Reading past post - your t4 was 45% through range and you had taken your Levo that morning!

They are absolutely wrong, you are right.

Cholesterol will come down when free Ts optimize.

Your free Ts are too low for you to feel well.

Congrats on taking control and not wasting any more time with people whose actions will prolong your suffering.

in reply toFallingInReverse

Thank you for your reply.

I’ll find out hopefully once I get a private appointment.

tattybogle profile image
tattybogle

any nurses dealing with thyroid patients Levo dosages should know that TSH 'in range' is not considered optimal treatment for patients on levo (even by NHS) .... best practice is to keep it below 2/2.5

ask nurse to update their knowledge base by reading the following list of references ~ (several were written specifically for GP's) , all recommend GP's keep TSH should be kept below 2/2.5 in all patients on levo :

healthunlocked.com/thyroidu....

in reply totattybogle

Thank you for your reply.

You just can’t get through to these people.

Forestgarden profile image
Forestgarden

I'm similar... high cholesterol, low thyroid hormones.... nurse I spoke to didn't have a clue they were linked. You're not neurotic, the nurse lacks knowledge. I've learnt not to stress about it because it causes me more harm, and not to expect anything useful from my local medical practice.

in reply toForestgarden

Thank you for your reply.

SarahJane1471 profile image
SarahJane1471

I’m currently ignoring requests from my GP surgery so I don’t have to go through all the stress of “ your TSH is suppressed so we need to drop your dose” malarkey! I feel like shouting “ I know that you dingbats I take T3 that you don’t know about and test privately, now leave me alone and give me my Levo prescription!!!!!!!” 😡

in reply toSarahJane1471

Thank you for your reply.

I told her I wouldn’t waste anymore of her time and I was going private.

SarahJane1471 profile image
SarahJane1471 in reply to

I wish I could but I need the NHS for my Levo prescription 🤷‍♀️

Sparklingsunshine profile image
Sparklingsunshine in reply to

The conspiracy theorist in me sometimes wonders if the NHS treats us so poorly on purpose so that we are driven into the arms of private medicine and are no longer a problem for them.

Then I'm reminded of the famous quote "Never attribute to malice that which is adequately explained by stupidity" So maybe not.

Sparklingsunshine profile image
Sparklingsunshine in reply toSarahJane1471

I did that last autumn, I've opted out of getting text reminders so they resorted to writing me stern letters instead. I strung it out for nearly 3 months but then was worried they'd refuse my repeat prescription for Levo, so got tested. I've also started on self sourced T3 so that will be an interesting conversation with my GP 😩

in reply toSparklingsunshine

Thank you for your reply.

Yes I know what you mean.

Can’t wait to get this sorted.

Anthea55 profile image
Anthea55

Would it help to have a list of symptoms? Here's the page from the Thyroid UK website. Can you send these links to the nurse?

thyroiduk.org/signs-and-sym...

You can download the list and tick all symptoms which apply to you.

Cholesterol is near the top of the list.

Click on the word 'cholesterol' and you will go to this page which describes the connection between hypo and cholesterol

thyroiduk.org/related-condi...

in reply toAnthea55

Thank your reply and the info

HandS profile image
HandS

So called ‘Professionals ‘ who don’t know what they don’t know are a curse in every walk of life . Nothing gets my blood to boiling point quicker.

Wishing you the best outcome from Endo appt

in reply toHandS

So frustrating isn’t it!

Thank you. Can’t wait. This is not doing my mental health any good.

HandS profile image
HandS in reply to

I know exactly what you mean.

One of the most damaging things psychologically is to deny a person’s reality, yet this seems to be the norm when numbers on a test result are given more importance than a person’s symptoms and quality of life. Numbers which are only a ‘reference interval’ have become baked into treatment responses as ‘the law’!

Be prepared with details of your symptoms for your endo appt .

mstp profile image
mstp

Even though you gave decided to go private, I think it is a shame if you don't give the nurse an opportunity to learn what you know. With GPs etc I take the view that it isn't their fault if their training is inadequate so they need me to help them. Having been off thyroxine for 12 years now, I'm hoping mine have learnt a lot.

in reply tomstp

thank you for your reply.

I hear what you are saying but this nurse won’t listen to me and said I was putting words in her mouth.

McPammy profile image
McPammy

As soon as my thyroid levels became optimum my cholesterol lowered from 6.8 to 4.9 within 6 weeks. And it’s remained good since. I went private only to get the diagnosis I’d needed for years. I needed to add T3 medication as I’m a very poor converter of T4 levo to the most important T3 hormone. Go private. Get your health back. The NHS is backward when it comes to treating thyroid patients.

in reply toMcPammy

That’s good to hear McPammy thank you😊

Looking forward to getting a private appointment as soon as possible.

Mollyfan profile image
Mollyfan in reply toMcPammy

I had a similar experience….. total cholesterol dropped from 6.8 to 4.7 in about 6 weeks on 10mcg T3 and triglycerides from 7.2 to 2.7

Also CRP dropped from 8 to just over 3.

McPammy profile image
McPammy in reply toMollyfan

I wish the NHS Drs would join the dots up. So many people living with thyroid diseases could have a better life.

Batty1 profile image
Batty1

I have same issue with GP and the Endo who both know about hypothyroidism and high cholesterol and still they don’t seem bothered by it because my labs are always in range…I get tired of beating my head on the desk every time I see these people. … hopefully you have a different response.

in reply toBatty1

Thank you for your reply Batty1

It’s so frustrating😖

I hope so that’s why I’m paying to see an endo. 🤞

Batty1 profile image
Batty1 in reply to

I also pay to see my Endo …. Maybe your Endo will be more accommodating.

in reply toBatty1

I hope so🤞

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