At what point do you get medication? - Thyroid UK

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At what point do you get medication?

11 Replies

I was diagnosed back in January and after the normal NHS blood tests, I was told that my thyroid function is normal, even though the whole gland is hugely swollen and hurts at times. T4 was in the normal range for the NHS test, I've not done a private test yet.

I'm experiencing pretty much all the symptoms, fatigue, difficulties with concentration, dry skin, weight gain, hair thinning and now constipation as well. Trying to keep on top of it with diet mostly and I'm supposed to have annual blood tests but am just wondering if I should insist on medication, even if T4 is still in the normal range? I'm still waiting for an appointment with the endo and don't get the impression that the GP is taking my concerns seriously, she keeps telling me that I'm probably "depressed".

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11 Replies
PurpleNails profile image
PurpleNailsAdministrator

What was tested? & what were results? 

Were you started on replacement? How much? Which Brand - or was it normal on 2nd test. 

Do you have online access or printed copies of results.  With the lab range? 

& normal means in range but in range might be just in range.

Some doctors think unless TSH is very high the thyroid is producing enough thyroid hormones. Not always the case & thyroid hormone FT4 & FT3 aren’t always tested if TSH “normal” enough. 

FT4 can be in range but FT3 still low.

Was anything else tested to investigate symptoms?

Sound like doctor has tested standard items nothing explains symptoms so they are labelling it as “probably depression”

I'm not sure you can insist if your results are deemed to be in range, especially if your doctor is going to fob you off with the ole depression cop out. Try and get hold of your blood tests and post them on here. Is there a different GP in the practice you could approach?

SlowDragon profile image
SlowDragonAdministrator

Please add the actual test results and ranges

Have you had ultrasound scan of thyroid done yet

You can request retesting 6-8 weeks after first test

Request that thyroid antibodies and vitamin D, folate, ferritin and B12 levels are also tested

Book early morning test, ideally around 9am

If GP refuses, or doesn’t test everything

Test privately

 

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

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

in reply toSlowDragon

Hi SlowDragon,

Thanks very much for your reply. I've had 2 ultrasounds about 2 months apart. There was no difference in size but the second one mentioned that it should be checked for Hashi's annually. At the moment it's diagnosed as goitre.

These are the TSH and T4 results:

Name Result Normal range

TSH 1.8 miu/L 0.38 – 5.33

T4 12.1 pmol/L 7.9 – 14.4

Apart from those, none of the others you mention were tested. I started taking vitamin D after reading about it in here and that's made a huge difference.

The one value that worries me is this:

Serum total bilirubin level 26 umol/L 5 - 21

This is the only one marked as abnormal and as it's to do with the liver, I think this is likely due to the thyroid issue. My last blood test before this was 10 years ago and it was normal then, but this high value wasn't even mentioned this time, I was just told that everything was normal.

Will try to insist on having all the tests done for the next blood test and if they won't do it, I'll have it done privately.

SlowDragon profile image
SlowDragonAdministrator in reply to

High bilirubin is likely Gilbert’s syndrome

Very common

Suggest you get full thyroid and vitamin testing done including thyroid antibodies privately

Test early morning around 9am

Both Medichecks and BH have Black Friday offers on currently

You can buy now and test now ……or wait to do test until after Christmas

Only do private testing early Monday or Tuesday morning and watch out for postal strikes

Come back with new post once you get results

radd profile image
radd in reply to

Sams127

'The one value that worries me is this: 

Serum total bilirubin level 26 umol/L 5 - 21

This is the only one marked as abnormal and as it's to do with the liver, I think this is likely due to the thyroid issue'.

You are correct in that low thyroid hormone levels can result in elevated serum levels of unconjugated bilirubin, caused by the decreased bile flow and bile salt excretion. I don’t know all the different stages of bilirubin metabolism in detail but its basically the end product of haemoglobin and heme degradation, and unconjugated (aka indirect) is the first stage and when its not metabolised properly we get build up.

I too had high levels and turned a little bit yellow 😬. Terrible news for your liver but mine reversed with optimised thyroid hormones and has never come back. I also had untreated iron overload which was effecting RBC’s, etc. I read the state of your gut can influence the degree of jaundice and my gut was terrible pre-hypo diagnosis .

Have you had albumin tested? This acts as the carrier protein taking unconjugated bilirubin to the liver.  Others have offered good advice re getting thyroid hormones tested (including FT3). If your thyroid gland is swollen it is a sign of extra activity indicating (previous) Hashi attacks and a gland which is struggling.

in reply toradd

Thanks for this. Albumin was in the normal range, albeit it at the high end.

Did they run any tests for you, or was the jaundice sufficient to diagnose this?

radd profile image
radd in reply to

Sams127,

I can't remember as had a huge amount of multiple issues going on. It was hard to keep up and my brain was foggy. I don't think they were particularly bothered and as I say when I started Levothyroxine many symptoms gradually alleviated.

(Many others were also created but that's another story 😉).

Frankiewat profile image
Frankiewat

Hi Sams127, I have been having the same problem, lots of symptoms but "normal" results according to GP. He won't accept any private testing which showed high thyroid antibody levels and a scan which reported my thyroid is shrinking. He just gave me anti-depressants. I hope you can get an answer and some support soon.

SlowDragon profile image
SlowDragonAdministrator in reply toFrankiewat

Frankiewat

Presumably you have been working on improving low vitamin levels discussed here in previous post

healthunlocked.com/thyroidu...

Suggest you get FULL thyroid and vitamin testing done now …or in New Year

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Good money off on Medichecks and BH at moment

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

tukadmin@thyroiduk.org

Frankiewat profile image
Frankiewat in reply toSlowDragon

Thanks, Slow Dragon, I will see about getting blood tests done, however, I cannot afford the costs of any Functional Doctor or private GP any longer. I lost my job and used what savings I had to have the Functional DX and consultations privately. I will definitely look at the blood tests though, thanks for your reply. I am still taking better You Vitamin D/K2 and have started magnesium/calcium/boron supplements. I have stopped the B12 as not sure whether they were of benefit.

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