OMG! An honest and frank GP?: I am gobsmacked. I... - Thyroid UK

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OMG! An honest and frank GP?

Portia1974 profile image
21 Replies

I am gobsmacked. I recently changed GP practice after fervent recommendation from local friends. Initially saw the locum. They phoned me the day they received my forms and I had an appointment with the locum that afternoon. She listened. I explained what I thought was going on. I then apologised for being "one of those amateur health sleuths that most doctors are aggravated by". She said "What on earth have you got to apologise for?! You're trying to find out what is wrong and that's perfectly natural. We need our patients to tell us what they think. Takes alot of guesswork away on our part, so we welcome it!" Whaaaat? It was like an out of body experience after years of eye rolls and dismissiveness from previous GPs.

I have all the symptoms of hypothyroidism. But TSH has always been "normal". And I never understood anything about T4/T3 etc until I joined this group and have got some amazing advice and information. The most pivotal of which was the importance of an in depth look at thyroid function which led me to get a medichecks finger prick check. These are the results:

THYROID STIMULATING HORMONE *4.73 mIU/L (0.27 - 4.20)

FREE THYROXINE *11.800 pmol/L (12.00 - 22.00)

FREE T3 3.61 pmol/L (3.10 - 6.80)

THYROGLOBULIN ANTIBODY <10 IU/mL (0.00 - 115.00)

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL (0.00 - 34.00)

The Locum ordered tests of their own but only tested TSH. Despite THEIR TSH coming back "normal" Today I received a phone call (yes a phone call) from the main partner. She spent a good 30 mins on the phone with me. Was patient. Listened. Agreed with me on pretty much everything and didn't bat an eyelid when I said that I thought the above results might be suggestive of Central Hypothyroidism with Pituitary involvement. (Thanks to advice on here I've been looking into that and it fits my symptoms and history). She said I could well be right and has set up blood tests for cortisol, prolactin etc. She said as it stands on the basis of the private results I am without question hypothyroid and is sorting out a trial of Levo (50mcg as a starting dose and then she wants to retest after 8 weeks).

Most interesting to me was her frankness about local endo services. She essentially said they are useless. That she has patients all the time that are clearly symptomatic but local endos reliance on blood results alone is meaning they are going undiagnosed. Her words " I can refer you if you want to and am happy to do that. But in my experience they will look at your bloods as they are now, and send you out the door telling you you're simply depressed. It's a conveyor belt. There's a 10 month wait and we can't leave you like this for another 10 months. So let's start you on replacement thyroid and monitor your symptoms" (Yes she said SYMPTOMS not just blood levels!)

She's also ordering re testing for thyroid antibodies as she is not content the above rules Hashis out completely and my results are indicating swings as the levels are erratic.

Anyway, just wanted to share. Thank those that have advised. Really just wanted to tell people who would understand why I find this so momentous after years of being dismissed and told it's all in my head.

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Portia1974
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21 Replies
StillEverHopeful profile image
StillEverHopeful

Think I need to move!

How wonderful for you.

Portia1974 profile image
Portia1974 in reply toStillEverHopeful

Essex is a great place to live 😉

nightingale-56 profile image
nightingale-56 in reply toPortia1974

Is she in Mid-essex Portia1974 ? Lucky you having a GP that knowledgeable.

Portia1974 profile image
Portia1974 in reply tonightingale-56

Dengie Peninsula. Do you know it j_bee?

nightingale-56 profile image
nightingale-56 in reply toPortia1974

Yes, I do know it, but unfortunately this is out of our area, unless I go private. we have two very unknowledgeable GPs at present as good ones retired.

Portia1974 profile image
Portia1974 in reply tonightingale-56

That sucks. Big time. So sorry. :(

ShinyB profile image
ShinyB

Wow, that's brilliant! Probably best not to let on where she is or we'll all be moving there and registering with her ;-) So pleased to hear of a sensible approach :D

Portia1974 profile image
Portia1974 in reply toShinyB

Ha ha! I know right? 😂 I feel like I've struck gold!

ShinyB profile image
ShinyB in reply toPortia1974

You have!! Stick with her :D

SeasideSusie profile image
SeasideSusieRemembering

Portia

Excellent! Why can't all doctors be like this, she is a breath of fresh air.

Portia1974 profile image
Portia1974 in reply toSeasideSusie

She totally is! I am so grateful to this group though. I wouldn't have known what I was talking about without you all!

FancyPants54 profile image
FancyPants54

What a great doctor! Good for you. You did your research and sounded confident and she listened.

Portia1974 profile image
Portia1974 in reply toFancyPants54

Thanks in no small part to you guys on here. So grateful.

Judithdalston profile image
Judithdalston

Oooo, lovely...a parallel world perhaps!

Portia1974 profile image
Portia1974 in reply toJudithdalston

I know right! I'm at odds at the moment trying to process what I've just experienced it's so alien!

SlowDragon profile image
SlowDragonAdministrator

Just brilliant.....well done

Make sure to get vitamin D, folate, ferritin and B12 tested too....if not been done

Or have you done this already?

10-20% with Hashimoto's never test positive for antibodies. An ultrasound of your thyroid might be useful if next antibodies test is negative. Thyroid appears granular if it's Hashimoto's

Portia1974 profile image
Portia1974 in reply toSlowDragon

Thanks SlowDragon 😊

Currently iron deficient (with anaemia). Work to do there.

Vit D is good right now but still not up there where I want it. It's 75. I want it around 150-200. So I have some work to do on that too.

Folate low. Baseline. Work to do there. The anti epileptics drugs I am on affect folate and vit D metabolism.

I am also on quarterly B12 jabs as cannot absorb.

At the moment I am in limbo. I am biding my time gathering info, test results etc taking NOTHING until I have the full picture. As sick of Meds for one thing skewing results for another.

But am gradually forming a picture. It's all falling into place after YEARS of "dunno" from docs. I have a plan that I will only embark upon once I'm sure I've got the full picture.

It may involve me going untreated for a little while longer. But I can just about bear feeling this crap for a little bit longer if it means I finally get to the bottom of it if that makes sense?

Few more tests needed IMHO. But SO excited to finally have a GP that I feel is an advocate for ME and my health, rather than gatekeeper of the NHS purse!

Trixie64 profile image
Trixie64

That's great Portia! How fortunate for you.

waveylines profile image
waveylines

Brilliant news! What a refreshing change to hear of a well informed GP. 🤗🤗

U02ejp6 profile image
U02ejp6

Glad to hear you have found a good GP and one willing to test antibodies on the NHS!!

What is Central Hypothyroidism with Pituitary involvement? And what are the symptoms?

Portia1974 profile image
Portia1974 in reply toU02ejp6

Central Hypothyroidism is where the issue lies not with the thyroid itself, but with the pituatary gland not working properly to release enough TSH to stimulate the thyroid to release enough to T4 to make enough T3. Basically the thyroid gland is fine...the problem is "further up the chain" So to speak. So TSH is never elevated enough to indicate an issue. But when you look at t4 and t3 they are low or under range. This us the first link members here pointed me towards:

endocrinologyadvisor.com/en...

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