Another venting post....

[whisperit]

Went to GP. Asked for copy of report from recent endocrinology assessment. "Sorry, printer's not working". Asked for recent blood results, "Sorry, that's on the hospital system, and we have no access to it". Asked for endo's plan of action "He will organise a synacthen test and if it shows no abnormality, we will go on treating you as we are now". What if it shows an abnormality? "Then we will monitor - and go on treating you as we are now". Asked why my possible thyroid problem was classed as "subclinical" when I have significant symptoms. "Your thyroxine levels are normal, so you can't have a clinical thyroid problem".

Left feeling utterly disempowered. And somehow guilty for asking questions.

Fuming.

[EOLHPC]

GRRRRRRRRR....Glad you vented mike...am having one of those days myself 🙇🏼‍♀️...wish i could Magic Away your temptation to feel guilty: you have no reason to feel ANY guilt! Feeling disempowered, on the other hand, is inevitable...we’d be vvvvv strange if we didn’t feel disempowered on a regular basis: and you’ve been having an extra long tough haul from the outset...you’ve been waiting for this endo appt & hoping for insight...instead you get THIS sloppy casual shirking of responsibility: GRRRRRRR...i hope the synachten test is illuminating! take care buddy 😘🤞🍀

[whisperit in reply to EOLHPC]

Thanks coco,

I have reached a point where I have accepted that the apparent complexity of my condition means that I am the only person who will take responsibility to sort it out. What is so frustrating is that even something as trivial as a routine blood test result is inaccessible without my making special efforts. It's a situation that I know you have had to cope with for a lot longer than me! X

[EOLHPC in reply to whisperit]

🤷🏼‍♀️ They knock us down...we keep pulling ourselves together to bounce back up...i couldn’t still be doing this without you and our good friends here 😘🍀

[Hidden in reply to whisperit]

Oh Mike I do sympathise. Do you think the printer story is rubbish and it was just to prevent you from accessing your Thyroid bloods and trying to work it out for yourself? I do know that Hypothyroidism is one very common condition that GPs and endo’s are often at loggerheads with the generally unwell population over. I can easily access my full blood counts and other stuff but Thyroid bloods they are unusually odd about. I usually phone reception and request they read them out to me - with lab ranges. You do absolutely have a right to this information! Xx

[whisperit in reply to Hidden]

I think he was being honest, but he succeeded in conveying the impression that I was making his life exceptionally difficult simply for asking. I will be ringing the hospital dept for those results but anticipate another struggle.

PS I've not been responding much to your recent posts, but I am following your continuing struggles - its good to know that you're still fighting your corner! x

[Hidden in reply to whisperit]

It can be hard for GP’s to access hospital bloods results yes. He may have a broken printer yes. But there is no excuse for making you feel bad for asking or for wanting them and querying subclinical.

Going back 15 years when my GP put me on Levothyroxine due to subclinical bloods and many symptoms - I was seeing her monthly about my excessive weight and hair loss. I admit that back then I hadn’t a clue - didn’t know it was even autoimmune - just thought “yay maybe I’ll get my hair back and lose some weight at last!”.

I’m still quite overweight but my hair has been very thick ever since. I often wonder if she would even diagnose and treat me now. I don’t know if they ran the full panel in your hospital but if your thyroid antibodies (TPA) and FT3 and 4 and vit D levels weren’t included it may be worth getting your full panel done privately - Blue Horizon is one private lab of many and they just send you a kit I believe?

No worries re my recent posts. There are far too many anyhow. Xx

[whisperit in reply to Hidden]

Yes, I got so fed up with getting the response, "Your TSH is OK, so there's no need for more tests" that I sent off for one of those kit tests (goodbye another £150). TSH is moderately elevated, thyroid abs elevated, T3 and 4 normal, cortisol low. "Subclinical hypothyroidism" said the endo when I showed him, and based on that, and regardless of my physical symptoms, he would not consider thyroid replacement. Still awaiting Vit D levels.

Thick hair eh? Now *that* would shock everyone.x

[Hidden in reply to whisperit]

Well I’m not sure I’d advocate going on the Thyroid UK HU. I find it a very hypertensive community personally but then I’m a born worrier and highly suggestible.

But there are many on there in your predicament who do opt for self medication out of sheer frustration and desperation. And I have to admit there are also many who seem to benefit enormously from this approach.

So these days I would find it very hard to view this kind of educated self treating reproachfully. X

[whisperit in reply to Hidden]

yes, i've dabbled with the ThyroidUK bit. That's the trouble with the whole HU thing - you start on the soft stuff, like Lupus UK, and before you know it, you're mainlining Functional Medicine and swapping tips on distilling crack thyroxene in your kitchen using chopped alpaca liver and Afghani evening primrose extract x

[Hidden in reply to whisperit]

Finely grated LDN with grains of salted pig thyroid - add lashings of organic seaweed and we will both be Rapunzel on ice. X

[Lupiknits in reply to whisperit]

Don't forget the activated almonds x

[whisperit in reply to Lupiknits]

Dont worry, I'm eating activated Shreddies this morning, and have told the greengrocer not to give me any more of those lackadaisical bananas she sells to the ordinary people - only aroused ones from now on x

[Melba1 in reply to whisperit]

Sorry you’re having such a rubbish time but so pleased you’ve managed to hold onto your sense of humour - that part about thyroid UK really made me laugh 😂 and is very true!!

So hope something clear turns up soon and you finally get someone who understands and can help you with what’s going on. Very frustrating for you when you’ve seen it from a clinician’s perspective yourself and always done the right thing.

Don’t give up looking for answers (and looking for the right drs!)

X

[Fennella02 in reply to whisperit]

How awkward your gp is being. My surgery used to give me the run around about hospital blood tests until the hospital told me categorically that it's b******s, they certainly can but they do need to flick to a different screen and use different passwords.

It's very depressing when you don't feel supported - a few encouraging words can go a very long way. Xx

[whisperit in reply to Fennella02]

Absolutely. When I was a clinician, if a patient hadn't seen their referral letter, I would hand it over to them and we'd go through it together. When I wrote a referral letter, I would read it out to the patient so they could fix any problems before I sent it off. For me, good care is all about sharing ideas and experiences, and working out - as equals - what the best thing to do would be. So many medics seem frightened to let go of their power....x

[PMRpro]

"Asked why my possible thyroid problem was classed as "subclinical" when I have significant symptoms. "Your thyroxine levels are normal, so you can't have a clinical thyroid problem"."

If there is one thing I detest it is doctors who treat the numbers not the patient - especially when actually there is a fair bit of dispute about the significance of the numbers...