private consult

[Insomania]

I went to see the private endocrinologist consultant.

He was very much guided by the GP letter.

Low cortisol saliva test - I’m going back on Monday morning for private blood tests x3 to rule out a rare pituitary condition. He feels certain i do not have it.

Multi nodular goitre - it is visibly larger, I have another nhs scan in July.

He said Thyroid meds could shrink the enlarged thyroid if it was underactive. However, my blood results are normal.

He said I have a thyroid with multiple cysts which is working very hard to produce the hormones I need but it is working well enough because my hormone levels are normal. A trial of thyroid meds could be harmful and swing it overactive.

(Yet if thyroid keeps growing as it is it will have to be removed and I’ll be on thyroid meds for life.)

I asked if I could have a trial. No because he doesn’t think my symptoms are thyroid based.

He too recommended trying 6 months of antidepressant to see if it makes a difference to my symptoms. Even if I don’t feel depressed, he said depression has physical symptoms. I explained I see a psychotherapist regularly and she doesn’t think I’m depressed either.

My GP will be delighted!

I have a free call with a telehealth thyroid GP in June and a thyroid ultrasound in July.

[Hidden]

. Even if I don’t feel depressed, he said depression has physical symptoms. I explained I see a psychotherapist regularly and she doesn’t think I’m depressed either.

I was advised to go onto an antidepressant to help with chronic pain. I had no depression.

After a few months on this drug, I was depressed and still had chronic pain - along with a bucket full of side effects. I am still trying to withdraw from it and that has its own problems.

For heaven’s sake. Which planet are these people on? And so begins the inevitable cascade prescribing and more bunce for Big Pharma.

Here’s a novel idea for a Prescribing Protocol:

Thyroid hormones for thyroid issues; antidepressants for depression; analgesia for pain. Simples

[Insomania in reply to Hidden]

This is my issue! I’m on HRT which probably helped symptoms 5-10% and now I’m dare not come off it because it helped a bit and I don’t want to feel any worse.

[arTistapple in reply to Hidden]

”For heaven’s sake. Which planet are these people on?”

That’s just about the most sensible description of what is going on I have heard. Well done Porridge37.

[J972]

Hi Insomnia,

You wrote:

He said I have a thyroid with multiple cysts which is working very hard to produce the hormones I need but it is working well enough because my hormone levels are normal.

What are your results, out of interest?

Also, what/who is a telehealth thyroid GP? Is that someone at a private online clinic and your initial consultation is free? I’m just curious 🧐

[Insomania in reply to J972]

Hi, if you click my name you can see past posts with my test results. T3 & T4 tends to be around 50% of range or just under, TSH is low in range.

Yes, exactly that. The 1st short intro call is free. I found them on the thyroid uk list.

[J972 in reply to Insomania]

Hi, very best of luck with the GP call 👊🏻

[McPammy]

I was told by my Dr I had depression and they offered medication for that. I refused as I knew it wasn’t depression. I felt all along it was my thyroid which they refused to even test. A long while later they tested my thyroid function and my TSH was 36! No wonder I was in a bad way physically not mentally. Maybe post your results when he said they were ok. If your TSH is above 2.5 you’ll have thyroid symptoms my private only endocrinologist explained this to me. Does your endocrinologist work for the NHS at all. If so they stick with the NHS guidelines on a lot of occasions I’ve read. Which means they’ll probably won’t medicate you until your levels snd TSH get worse.

[Hidden in reply to McPammy]

What a sad story 😢

Really hope you’re feeling much better McPammy.

[McPammy in reply to Hidden]

yep! Feeling great now I’m properly diagnosed and treated.

[HandS in reply to McPammy]

your story is my story! Exactly what happened to me

[McPammy in reply to HandS]

dreadful isn’t it what we have to go through.

[HandS in reply to McPammy]

it is: went through unnecessary hell tbh - and not a lot seems to be changing . Wish I had found this group years ago

[Insomania in reply to McPammy]

Goodness, that’s an alarming TSH!

I am under a lot of stress as a carer but I have a LOT of thyroid symptoms.

The Dr just echoed what the GP has said. He hadn’t even seen my blood results, he accepted the GPs description of ‘normal.’ (He did then look at them too.) He questioned why I was taking vits B12 and D because those results were “within normal range.”

Yes, this was nhs consultant working privately. If you click my name you can see recent tests, I’ve had so many over the last two years, can’t fault the GPS there!

My thyroid is physically struggling (very enlarged, worse than 2y ago) but that is not yet reflected in blood results.

[McPammy in reply to Insomania]

try seeking private only endocrinologist help if you can. This is what I did after many failed NHS Drs diagnosis’s. Normal to a GP could be a TSH as high as 5 and anything over 2.5 you’ll have symptoms. Check your blood results through patient access or get printed copies of the GP receptionists. We are all allowed our NHS results and much more. If you don’t have patients access then request it through the GP receptionist again we can all have this access.

[Insomania in reply to McPammy]

This was a nhs consultant working privately, from the thyroid uk list. I have the nhs app and the local hospital app, blood results going back to 2017.

I’m going to try a private telehealth practice too from the thyroid uk list.

[Minimol]

I wonder if perhaps a second opinion would be helpful? Ask your GP for another referral on the basis the Endo you saw offered anti-depressants as a treatment for a visible goitre.

[Insomania in reply to Minimol]

This was the 2nd opinion!

I cannot get an nhs referral, I’ve tried for two years but I don’t meet the criteria for nhs endo.

I have seen an nhs ENT consultant about the thyroid and I have a rescan coming up. There seems to be no treatment for goitre except surgery to remove it which I don’t want to do unless necessary for swallowing/breathing. I only have a little discomfort with swallowing but it has visibly grown in two years since identified.

[FoggyThinker]

Quick reply - big hugs, it's a nightmare! I've finally got treated by a private GP although NHS won't treat me, my TSH is <5 but I have hashimotos - feeling so much better now. So I wanted to tell you there is hope and good luck!

[Hidden in reply to FoggyThinker]

I’m using a private GP now - for all issues. Yes, we shouldn’t have to but it seems the only way to get any medical support at all.

We have the ‘one subject’, ‘one appt’ rubbish.

[FoggyThinker in reply to Hidden]

Completely agree, insert rant here!! It's all wrong and it makes me mad for so many reasons (at least now I have the energy to get mad - something to be thankful for)

[Tlflom]

This may have no relation to you. I was taking 2 drops of iodine under the tongue for a couple of years. It caused a cyst and a nodule on my thyroid confirmed by ultrasound. I stopped the iodine and the thyroid returned to normal and confirmed by ultrasound the following year. I am hypothyroid, controlled by armorthyroid and levo. The dose has not changed in years.I hope you have been tested for thyroid cancer. Do not do the wait and see approach. I treat cancer and have seen this many times.

[Insomania in reply to Tlflom]

It was quickly checked out as non-cancerous via the nhs 2ww pathway! Very thankful.

I don’t take iodine. No family history. Likely it started in my last pregnancy.

[Hidden in reply to Insomania]

The 2ww pathway is excellent but sadly it relies on the early diagnostic skills of the GP

[Insomania in reply to Hidden]

I had a car accident during lockdown and had a minor injury. The insurance company sent me to a physiotherapist. She spotted it!

[Hidden in reply to Insomania]

Well done 😉

My thyroid cancer was spotted by an anaesthetist during an op for another cancer.

Happenstance