Idiot endo!!!!

[Dee8686]

I have been under an endo (on the TUK list) who I thought initially was really helpful as he listened to my story and acknowledged that I “had been really badly treated,” by my thyroid results being ignored for 2 years and being diagnosed with Cfs. (Read my profile).

I have had lots of testing done- adrenal, hormone, thyroid and each time I have had thyroid results that conflict with nhs testing. Nhs showing high tsh and low frees, private tests showing high tsh and high frees. He has not been interested in the nhs tests and so has told me to come off all meds and then sent me by email, a message that I might have a pituitary tumour and to go sort an mri scan. So, I’m waiting for this.

Over the weekend after I sent him an email with a few more questions and info about how I had been feeling (exhaustion/ fatigue - wondering if I had done the right thing coming off meds) he replies to me late last night telling me I have chronic fatigue and that I should be referred to an ME clinic.

I simply cannot believe this. My thyroid results conflict yes, but whichever one you choose to interpret, something is clearly wrong with my thyroid. Either I’m undermedicated or I have a problem producing too much thyroid hormone!!

How on earth, with everything this shows and what he has suggested with mri etc can it now be concluded that I have chronic fatigue syndrome?!

This is exactly the diagnosis and treatment I was trying to move away from and address the real underlying issue. In 3 short months I have spent thousands on someone who has sent me round in a circle.

In my head I thought because he’s on the TUK list, he will help get me better. Unfortunately I am in a tricky position as I need him to prescribe my meds 😞

Please can someone else reassure me that I am not going mad and that I do actually have a thyroid issue going on?!! (You can see actual results on conflicting results post).

You can’t diagnose Cfs unless all other root causes of fatigue have been addressed!!!

So, so disappoInted cross and let down. I feel like he has completely over committed himself to having too many patients and cannot cope with more complex issues. A word of warning to everyone else- do your own research,

Even if they’re on the list!!!

[Peanut31]

Hi Dee8686

First of all your not going mad.

I too had an idiot of an Endocrinologist and obtained his name off the list provided from here.

However, to be fair, once it became evident he was useless and I had wasted time and money, I emailed Thyroid UK and told them my journey.

They did reply back and state they had removed him off the list as they have zero tolerance.

The list is made up, I think of patient recommendations.

Can you private message me the Endocrinologist please.

It could be the same one and if so they should of been removed.

You could report him to them.

My story is after 18 months of hell not realising what was happening to me, a acupuncturist suggested I had my thyroid checked.

I had only gone for acupuncture as I had terrible neck stiffness and no chrio and physio could seem to sort it out, I was depressed, freezing cold, dry skin, hair loss, anxiety was through the roof, and freezing cold.

Anyway to cut a long story short, the Endocrinologist diagnosed me with Hashimoto’s, all my vitamin levels were low too. We spent months going back to see him and all we would discuss were my vitamin levels.

It was me that suggested a scan on my neck and private bloods of thyroid. Both confirmed Hashimoto’s and bloods confirmed underactive thyroid.

I requested medication (Levothyroxine) He stated no medication would help and to take anti depressants and go on a holiday. I refused anti depressants.

This is when I joined this forum and it became quite clear he had no idea. I went gluten dairy free and it helped. But, still no medication.

Obviously, as I was not on any medication I got worse and my TSH was 12.2, my GP put me on Levothyroxine.

It’s still early days but, we are make progress.

Interestingly, my GP didn’t rate this Endocrinologist either and stated ‘even if he was last last Endocrinologist on this earth he wouldn’t see him).

Have you thought about self medicating? Lots are forced to do this.

I know you have mentioned you have previously included your blood result on here, but perhaps do this again and the experienced members will advise.

Best wishes

Peanut31

[Dee8686 in reply to Peanut31]

Hi thank you for your reply. I just don’t understand it all. My results are a little hard to interpret at present as they consistently conflict so I am hoping to have another test soon at a London lab. This endo though knew my story. They were initially sympathetic and how the whole Cfs diagnosis is all too familiar. It was when we weren’t getting anywhere with treatment (I’ve only been doing this since March) and the obstacles the blood tests present that he seemed off and dismissive in his emails. The previous email told me to get an mri scan because I may have a tumour and the one last night after i basiavally asked him, how might he interpret my situation if the other results were looked at he then sent me a patronising letter stating ‘surely I must realise it takes a long time to recover from Cfs?’

He has gone against everything he initially set out (I thought) to help me with.

You won’t be able to make sense of my reaukts- members have already looked. They conflict. One set show consistently high tsh and over range frees and my nhs show that I am simply undermedicated with high tsh and low frees.

Just feel so let down. Glad you are getting somewhere now x

[Marz]

Sorry to read your post. Tried reading your earlier posts/threads - some are very long so didn't find a solution.

I would ask members for the best person to see - in a new question.