UNBELIEVABLE ENDO COMMENTS

[NIKEGIRL]

I have Graves’ disease. I was taking 150mgs of PTU for suppression because that’s what I was asked to do. My results were

T4 5 range 8-16 (-32% in the range)

T3 3.7 range 3.3-6.8 (11% in the range)

I am T3 dominant so T4 will never matter. Ever. Officially told this by Endo herself.

At the Endo appt I was told that I was in the sweet spot. I did not feel in the sweet spot. I felt suicidal. Cold. Constipated. I was told none of these feelings were my thyroid and instead have been referred for a psychiatric evaluation. I am genuinely serious.

I’m lost for words. I hate doctors.

[jimh111]

Not a very knowledgeable endocrinologist. Your T3 is proportionally higher because the Graves' antibodies act like TSH and stimulate peripheral T4 to T3 conversion. This is important because when these antibodies fall away you will probably find your T3 is low, at least until your TSH recovers.

Your symptoms are more important than the blood tests, but your symptoms concur with the low fT3, fT4. I'd consider asking for a second opinion, perhaps if you are able to do this via the hospital it will reveal the endocrinologist's lack of knowledge. You could even raise a concern that the endocrinologist may not be properly qualified or in need of further training.

[NIKEGIRL in reply to jimh111]

Hi. I always appreciate and value your opinion. This was from the highest endocrinologist at the hospital. I wanted block and replace and told no. Not ever. I’m lost for words. I was made to feel like I was mentally ill because I felt physically so unwell. And now referred to a psychiatrist for an evaluation

[jimh111 in reply to NIKEGIRL]

I dont' know what to say other than invite the endocrinologist along to the psychiatric evaluation so they can sort out which of you is the nutter.

[NIKEGIRL in reply to jimh111]

I have not taken my PTU drugs in 2 weeks to try and recover from this suppression protocol. Only yesterday did I go back to 50mgs of PTU. I was asked to do 75mgs a day but have chosen to do 50mgs. Honesty I am lost for words. I’m so angry. How dare the endocrinologist say my levels are ok at 11% in the range when I felt so unwell and bed bound for days.

[NWA6 in reply to jimh111]

Top answer!

[Hidden in reply to NIKEGIRL]

I really think that we should stop accepting this rubbish. Doctors are mere mortals in spite of their elevated sense of self importance.

He is wrong. He is putting your health at risk. He is not qualified to assess your mental health and refer you to a psychiatrist. He is not fit to practise.

Nothing less than a complaint through the hospital complaints procedure should be the next step. I would be reporting him to GMC too.

[helvella in reply to Hidden]

Not in the UK - so not GMC.

[Hidden in reply to helvella]

Oh that’s a pity. I wonder if they have an equivalent.

[NIKEGIRL in reply to Hidden]

We have patient liaison here. Honestly I’m really done. I don’t think I will ever go back. I hate drs

[helvella in reply to Hidden]

I think this is what is required:

Medical Council of New Zealand

mcnz.org.nz/

But despite her suffering NIKEGIRL almost certainly knows this already.

[NIKEGIRL in reply to helvella]

Officially done

[NIKEGIRL]

Honestly. I am so upset. No wonder I felt so poorly. I live in New Zealand. Can’t touch the bastards here. It was a woman endocrinologist. The top endocrinologist as well. She was aggressive with me and I gave as good as I got. I’m just so done. I’m bloody lucky I didn’t take an overdose. I told the endocrinologist to her face that it would be easier to take an overdose some days than dealing with this.

[NWA6 in reply to NIKEGIRL]

I am so so sorry to hear this, such deep and horrid feelings. I really hope you found a way through. I hope you keep feeling angry and use it to propel your self forward and away from that Endo. 😣

[NIKEGIRL in reply to NWA6]

If I am honest I don’t hold anger for too long. It’s draining. I’m just done. Officially done.

[NWA6 in reply to NIKEGIRL]

I guess it’s different for all of us, I dont see anger as a negative feeling, I control it and make it work for me so that I can fight my corner. ‘Just done, officially done’? What does that mean for you?

[NIKEGIRL in reply to NWA6]

Done. Officially done means I never want to see an endocrinologist ever again. All I get made to feel is like I am a mental health patient. I need to be careful and watch myself.

[helvella in reply to NIKEGIRL]

Maybe not right now, but have you considered approaching a service like this:

The Nationwide Health and Disability Advocacy Service is a free service that operates independently from all health and disability service providers and agencies.

advocacy.org.nz/

I know nothing of them, or the rest of your systems. But if not this one, maybe there are others?

[NIKEGIRL in reply to helvella]

Thank you for the link. I will look into this. I appreciate all the effort and time u give. I genuinely do. Thank u so much.

[Phronsias2]

Hi

For years I was told it was all in my head, when I was diagnosed ,I was told " do not blame everything on my thyroid" it would be so nice to be believed!!

All the berst

Frank

[tattybogle]

didn't you say that nice psych you have been seeing so successfully works on the same dept (?) perhaps they should refer you to him (and pay for your time with him in future ) if they are so concerned about your state of mind.

Just ignore the snotty cow. Her opinion of your headstate is not worth the paper it's written on.

If anyone need a psychiatric evaluation it's her .. to find out which childhood trauma has meant she's closed minded to the perfectly logical idea of trying B & R ,, or so chicken she can't stand up to her boss and ask for permission to try it in your case.

[fuchsia-pink]

I'm so sorry, Nikegirl. What a horrible miserable position to be put in.

I've no idea what it's like in NZ but here in the UK it's my understanding that psychiatrists are also allowed to prescribe T3 meds (ie it's not just endos) - so was wondering if you can get yours to prescribe block & replace when you see her/him? Would be interesting to see if a successful trial of that sorted out both your (non-existent) mental issues and your (very real) physical ones

Sending you a big hug x

[SlowDragon Administrator]

Sending you a big hug

I had to go see psychiatrist for 6-8 weeks …..as original Endo insisted my symptoms couldn’t possibly be thyroid related and that I had “elected to be stuck in bed/wheelchair”

Psychiatrist was brilliant, wrote highly complimentary report that instantly got me a referral to endo of my choice for a second opinion

[Lavender-Blue]

In Marion Gluck's book "It must be my harmones", she refers to Women being inpatients in Psychiatry, only to discover that the Women were Hypothyroid!

[Cavapoochonowner]

Hello there, You do seem to keep hitting the same brick wall.By now you probably know more about graves than most endocrinologists. Could you self medicate with PTU and pay for your own blood tests to manage your own health?Would that be possible for you to do?Your poor mental health is being caused by not being listened to and your graves being mismanaged. How you have persevered for so long is a testament to your strength.A few people on here are managing their own health and maybe that is the way forward for you.Best wishes from a fellow graves sufferer. I am shocked at the way you have been treated and for such a long time too.

[serenfach]

I think many of us here have been told it is all psycological. My GP gave me a prescription for ADs which I never filled, as he said I may feel worse for a few days. I could not afford to feel worse. It was not long after this I developed a goitre.

I had one Endo say it is all in your head, and I told him that is not where my thyroid is, and if he did not know that, I was out of there. His face was worth it!

I can fully understand your absolute condemnation but it may be worth seeing the psychiatrist so he can tell the Endo that it is not in your head and maybe shake her a little.