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Further thyroid testing "an internet fad"

(141 Posts)
Saucery Fri 10-Mar-17 09:50:13

Just been told this by my GP. All testing beyond the basic single baseline blood test is something some people on the internet have turned into a craze, apparently.

Saucery Fri 10-Mar-17 09:53:57

Just realised this might look like one of those goady 'discuss' type threads. It's really not, I'm just astounded she would say that and tell me I need to adjust my opinion of antidepressants as I am clearly imagining the huge checklist of symptoms. So if VitD and B12 come back ok then it's happy pills or nothing. angry

tobee Fri 10-Mar-17 11:58:53

It's very frustrating. If it's the case that it's just a craze then how come when people get to use more medication it makes their symptoms improve? I feel it's more about finances than about helping patients. Surprise. Also, why do different countries and different health authorities have different numbers for that base line?

Saucery Fri 10-Mar-17 12:06:38

She wouldn't even give me the level. Said it was within normal range and that's all I needed to know.
I think ADs are fantastic where appropriate . I do not think physical symptoms should be dismissed and masked by them.

VimFuego101 Fri 10-Mar-17 12:13:05

I think most GPs have very limited knowledge of thyroid issues, and follow outdated guidance about what is 'normal'. It's very frustrating.

hollinhurst84 Fri 10-Mar-17 12:16:20

Different issue but I had yep bloods fine, bloods fine, WBC a little low, bloods fine. That was 8 years. In 2015 a locum did my bloods and rang me to say she had plotted my previous 50+ blood tests and I was neutropenic on every one. Which might explain the constant illness maybe?! hmm
I was diagnosed in October 2015 and started on medication. No illness since

Saucery Fri 10-Mar-17 12:19:22

I wasn't particularly single minded about it either. The symptom checker I took in for clarity was from Thyroid UK but I told her I was prepared for it not to be. Before she even looked at the test results she started to talk about 'mood' and how it can demotivate us and cause tiredness and weight gain. Ffs, so can lots of things! But if it looks like a duck and quacks like a duck.........

I'm having Vit D and B12 etc tests but if they come back normal I am going to have to look at private referral etc. I absolutely will not just zone out the symptoms with ADs.

Saucery Fri 10-Mar-17 12:22:11

Yes, hollinhurst84, it's that kind of joined up thinking I am looking for. More....holistic iyswim? Taking on board what the patient is saying and not just sending off Tired All The Time blood tests.

RedBugMug Fri 10-Mar-17 12:26:56

just ask at reception for a copy of the blood test results.

Stormtreader Fri 10-Mar-17 12:30:09

"All testing beyond the basic single baseline blood test is something some people on the internet have turned into a craze, apparently"

You know why that is? Because "internet people" have gotten annoyed with being fobbed off. The basic test is "T4 level" but if youre having issues converting that to T3 then its useless to you.

EssentialHummus Fri 10-Mar-17 12:31:06

Yy to asking at reception. Hypothyroidism is one of those conditions where you really need to push hard and be your own advocate - hard when you feel like death warmed up.

MamaMagellanic Fri 10-Mar-17 12:31:54

My endocrinologist disagrees.

Saucery Fri 10-Mar-17 12:33:17

I had Hell of a job getting them last time! They refused in case it formed the basis of a complaint and I had to quote NHS Governance at them until they agreed and sign a form to say nothing in those results would be used by me against the practice. Like, justbwhat you need when you are tired and ill <sigh>
I will do, though. Should have asked today but was worried I might cry from sheer frustration so rushed out.

Saucery Fri 10-Mar-17 12:36:23

Exactly, Stormtreader! I didn't think it was wacky and Out There to consider conversion levels.

Thank you everyone, I know there are loads of threads on this subject but I didn't want to jump on them and hijack. I do read them, though and definitely don't consider them a craze or a fad off the Internet. Unlike my (usually helpful) GP.

ErrolTheDragon Fri 10-Mar-17 13:23:27

Maybe you should ask for a second opinion or a referral?

Pleasemrstweedie Fri 10-Mar-17 13:30:10

Ask for a print out of the results of the tests you have had so far, with the reference ranges. This is your data, so under the Data Protection Act, you can have it. End of. Then tell your story and post your results, including the vitamin B12 and vitamin D ones when you get them, on the ThyroidUK forum at www.healthunlocked.com and you'll get lots of good, non woo, advice.

A full thyroid screen is not an internet fad at all. Testing TSH only causes more misery than almost anything else because, among other things, it doesn't pick up secondary or tertiary hypothyroidism and it cannot be used as a yardstick where a patient has Graves Disease.

Saucery Fri 10-Mar-17 16:05:28

That's the thing, pleasemrstweedie, I didn't think I'd explained myself properly at first as the T4-T3 test is pretty standard for further investigation, not some bloody Woo crap off the Internet. But I asked her to clarify and that is what she meant. "Your Thyroid result is your Thyroid result and if that's ok then there is no point in having extra tests" hmm
I'm really not fixated on it being Thyroid related at all, but I have a maternal family history of hypothyroidism and 85% of the symptoms so surely it's worth an extra investigation.
ADs must be going cheap, because that's all she was willing to offer after the next lot of tests if they come back ok.
I will fight my corner politely and continue to push this. Disappointed as I waited 4 weeks to see this GP on past experience of her being pretty good with other stuff. I was offered Lustral a couple of years ago (declined it) so thought she might be different and a bit more tuned in to other possibilities.

ExplodedCloud Fri 10-Mar-17 16:20:20

I agree with you. I'm battling the same issue. I sit there with some of the less common symptoms (and lots of the common) being told my results are 'normal' that variations aren't important etc etc.
It feels like any middle aged woman complaining of TAAT/weight gain etc is written off.
I was told once that I needed to cut down my chocolate consumption. Protesting I hardly ate the stuff, I was told I must be underestimating it. angry

ExplodedCloud Fri 10-Mar-17 16:23:08

To back that up ^^ I've got a packet of Twirls in my desk drawer. There are two left. The sell by date is August 2015...

Deux Fri 10-Mar-17 16:36:47

Oh poor you. I hope something shows up in your tests and that it's easily treatable.

4 years ago I went to my GP after feeling lousy for months. Taat, muscle aches and pains, lethargy, near constant colds and infections, low mood, feeling like I was walking through treacle wearing lead boots. You get the picture.

GP asked me if I thought I was depressed. I said I didn't think I was but all this tiredness was making my mood really low. He prescribed ADs to take in the meantime whilst waiting for bloods! Well if I wasn't depressed before taking them I sure as hell was after. Ended up being yellow carded as an adverse reaction after only 5 days. Was awful, awful, awful.

GP ran bloods and was concerned about thyroid as my mum has an underactive thyroid. He also ran Vit D and in my case my vit D was terribly low and I felt better pretty quickly on high dose supplement. And my low mood lifted pretty quickly.

The point of all that is to say don't be fobbed off with ADs. It does seem to be used as a quick fix at times.

Saucery Fri 10-Mar-17 16:37:08

Oh ExplodedCloud, it's dreadful, isn't it? Like you're invisible as a person, just some overweight knackered middle aged woman sat there. I used to run regularly, climb hills, set out wandering with the dog for 3 hours. Now I have to use the weekends to recover from work (Active but not excessively so) and roll on Monday I want to cry because that's all I know I can manage - sod trying to walk up mountains or go out to a party in my free time.
What a fucking drag. Must be a deficiency in there somewhere but I'm damn sure it ain't in my brain chemistry.

Deux Fri 10-Mar-17 16:38:18

Meant to ask, how old are you? Many of these symptoms are prevalent in perimenopause and estrogen might help.

Deux Fri 10-Mar-17 16:41:53

In case it's useful for anyone here is a link to perimenopause symptoms questionnaire.

secure.thesurreyparkclinic.co.uk/sq.php

Saucery Fri 10-Mar-17 16:41:56

Such a simple thing, isn't it, Deux? That Vit D can have such a rapid effect if you are low in it. I really hope mine is. I'm a "right, what's wrong with me? How do I fix it?" sort of person and I just want to get back to who I was.
How on Earth they think ADs, with all the adjustment and adverse effects they can have will solve everything is beyond me.

Saucery Fri 10-Mar-17 16:43:19

I'm 46, Deux. She said as my periods are still regular (but incredibly heavy) she wouldn't consider perimenopause as testable or likely.

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