No help from doctor : Severe exhaustion, muscle... - Thyroid UK

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No help from doctor

EDHAHH profile image
11 Replies

Severe exhaustion, muscle weakness, numbness and pins and needles in hands and fingers, palpitations, dizziness, vertigo, cognitive impairment, low blood pressure, low vitamin D I could go on. For more than 10 years the above has blighted my life. Doctors say bloods show nothing so I’m left with the label of ME/CFS but after everything I’ve read I’m not convinced and my condition has significantly worsened over recent months despite the fact that I control and monitor my diet, sleep and physical activity. Recent thyroid check results below. Has anybody had similar experiences? Today’s visit to my doctor has left me feeling that I’m not being listened to and I don’t know what’s next. Any advice appreciated. My doctor wouldn’t even discuss thyroglobulin result as apparently it means nothing and won’t refer to Endocrinology.

TSH 2.79 (0.27-4.2)

Free T3 5.97 (3.1-6.8)

Free thyroxine 19.3 (12-22)

Thyroglobulin antibodies 167 (<115)

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EDHAHH profile image
EDHAHH
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11 Replies
RedApple profile image
RedAppleAdministrator

EDHAHH, Are you on any thyroid medication?

EDHAHH profile image
EDHAHH in reply toRedApple

No

ILR2019 profile image
ILR2019

Unfortunately your frustrations are not isolated and mirror those of many posters (myself included). At some point, GP's seem to have stopped taking symptoms into consideration and abandoned the pragmatic approach to treatment in favour of obeying fixed rules.

Have you asked your GP what your symptoms do point to if they don't think thyroid?

EDHAHH profile image
EDHAHH in reply toILR2019

Thanks for the reply. It’s so exhausting having to push for support/diagnosis when you feel so ill that the most basic of everyday tasks are a challenge. She’s adamant it’s ME but I don’t feel all avenues have been explored and investigation hasn’t been consistent.

ILR2019 profile image
ILR2019 in reply toEDHAHH

Purely on the grounds that there is no single test to even diagnose ME, your GP should be ruling out other illnessess/disorders/deficiencies etc first. You'd think it would be in their interest, particularly as medication, cognitive therapy etc are all much more of a financial burden to the NHS than treating vitamin deficiencies etc.

MaisieGray profile image
MaisieGray

Your FT4 result is 73% in range and your FT3 is 77.57% so your results are generally good and your FT4 to FT3 conversion also good, hence why your GP is unwilling to investigate further thyroid-wise. Whilst your TG Ab is elevated it is a less specific indicator than an elevated TPO Ab, and whilst higher levels could be associated with either Graves' or Hashimoto's, lower elevations can indicate the possibility of say, type 1 diabetes, pernicious anemia, a drop in red blood cells caused by a vitamin B-12 deficiency, collagen vascular diseases such as rheumatoid arthritis and scleroderma, and thyroid cancer. So as your FT4 & FT3 levels don't indicate thyroid dysfunction at this point, your Dr should be investigating why your TG Ab are elevated, including ordering a vit B12 test if that hasn't already been done.

ILR2019 profile image
ILR2019 in reply toMaisieGray

I don't understand why GP's are not automatically conducting these basic tests before slapping patients with 'probable diadnoses'.

I was sent for a nerve conduction test last year after complaing about increasingly aching arms and legs (the aches have now become painful) after being diagnosed with hypo, yet my GP did not (and still hasn't) ordered bloods to detect if I have vitamin deficiencies....!

EDHAHH profile image
EDHAHH in reply toMaisieGray

Thanks for the advice my mum is diabetic and has rheumatoid arthritis but doctor feels these elevations don’t need investigation. Think I need a second opinion

SlowDragon profile image
SlowDragonAdministrator

High TG antibodies can be due to other reasons....but it may be Hashimoto's (but UK medics very reluctant to diagnose on only high TG antibodies)

healthline.com/health/antit...

Presumably TPO antibodies were within range?

An ultrasound scan of thyroid can be helpful, diagnosing Hashimoto's, or small thyroid or nodules

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

recommend you get vitamins tested and see if you can persuade GP to do ultrasound scan

Low vitamin levels can cause significant symptoms in own right, or can be affecting thyroid too

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

EDHAHH profile image
EDHAHH

Thanks for the advice I’ll read more into this

birkie profile image
birkie

Hi EDHAHH

Believe me I know how you feel for about 4/5 years I was tell in my doctor my symptoms most like yours I did my own investigation in to the symptoms as I had overactive parathiyroid glands in 2004 so symptoms were somewhat similar.i felt sure I was attaking my thiyroid but all blood work were within range but I was feeling rubbish but because I was going threw the menupause I started at about 42 I'm 57 now my GP just kept putting it down to that upshot was I had graves my thiyroid was going overactive but bloods showed nothing until I was so bad I demanded a emergency app luckily I saw another doctor she took bloods their and then my t3 was 24.2 high..my thiyroid became toxic and was removed on May 8th this year so I don't think doctors or endos should go off bloods alone I was clearly ill because of my overactive thiyroid not the menupause..I had to bug my GP for over 4 years to listen to me he was shocked when he found out I had graves I'd been telling him for years I had an auto immune illness all I got was its the menupause😡 So keep fighting your GP..I've been on levo 3 types now and I started in the last 7 days having hyper symptoms again my hands are shaking I'm sweating bad again going to the loo a lot insomnia bad,,,I'm having bloods done on Monday so will see what's what..

❤️❤️

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