Private?: Hi, We just totally seem to be hitting... - Thyroid UK

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Private?

Roxyburg profile image
7 Replies

Hi,

We just totally seem to be hitting a brick wall with out GP. Apparently all of his results are in the 'normal' range but still all of his symptoms are there. The balding eye brows, feeling like there's a lump in his throat, the aches, the fatigue, pins and needles, poor mental health, insomnia, brain fog, foot pain, history of carpel tunnel and ibs....the list goes on. We now have to wait another week for his bloods to be taken AGAIN to test t3 and t4 as they failed to do it last time despite agreeing they would. He's also autistic so struggling with all the delays and not being able to get the answers to move on.

Realistically how much would we be looking at to go private? Or does anyone have any tips to help push the GP in the right direction?

TIA

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Roxyburg
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Jaydee1507 profile image
Jaydee1507Administrator

Looking at the results you posted earlier:

TSH 0.65 miu/l (0-7 normal)

Thyroid peroxidase 14ku/l (0-5.6 normal)

B12 706ng/l (0-968 normal)

Iron 19 umol/l (0-148 normal)

Ferritin 226ng/ml (0-296 normal)

Folate 11ng/l (0-19 normal)

The reference ranges seem wrong, so perhaps get the NHS app then register at GP reception to be able to see test results on the app. I belive only people living in Endgland can do this though.

Before doing anything else or thinking about paying to see a doctor it would be a good idea to get a full thyroid panel done to include TSH, FT4 & FT3 plus TPO antibodies & Tg antibodies that the NHS doesn't test for.

His TSH looks very normal and even a private doctor isn't going to give a diagnosis of hypothyroisism on the basis of TSH 0.65.

If he has found a carnivore diet helpful and cannot tolerate carbs then he might look into doing a low histamine diet which does have links with people with autism.

A private doctor would cost in the region of minimum £200-300 for first appointment plus tests which can add up to a lot.

See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.

Roxyburg profile image
Roxyburg in reply toJaydee1507

So the NHS site brought up what the GP looked at which said they were all normal. But then the site where we book his appointments gives a link to the labtestsonline.org.uk page which is where I took the ranges from as this is where they recommend we get more info about blood tests from.

He's struggling to understand why they just won't do the whole thyroid test range despite all his previous tests and ongoing issues

Jaydee1507 profile image
Jaydee1507Administrator in reply toRoxyburg

Unfortunately you can't use the labtestsonline ranges with your blodo results. They are probably there as just a guide and likely bare no resemblance to the actual lab ranges where hubbies test was run.

The NHS just doesn't see the importance of a full thyroid panel and as a result many members here have to pay for their own private blood tests to get themselves well and know what is actually happening.

I'd recommend you get the private tests done but as it stands his TSH looks very normal.

in reply toRoxyburg

I agree completely with Jaydee. A TSH result like that is unlikely to move either your GP or a private endocrinologist towards a complete thyroid test panel.

The complaints you list must be very distressing but perhaps you need to have investigations in other areas.

Finally, just wondering if he takes any meds for conditions relating to autism - or any meds at all?

Roxyburg profile image
Roxyburg in reply to

No there's no medication for autism. He's taking a variety of supplements to help ease his symptoms. If was able to work out what's wrong and help make these symptoms easier to manage he would be able to un-pause his life. He hasn't worked since 1st COVID lockdown initially due to his mental health but now his variety of complaints.

TiggerMe profile image
TiggerMeAmbassador in reply toJaydee1507

Freudian slip alert ⚠️..... "Endgland" 🤣👏

Jaydee1507 profile image
Jaydee1507Administrator in reply toTiggerMe

Happy my typo's are entertaining. :D

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