TSH: hi, thoughts please, should TSH that is... - Thyroid UK

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Deni52 profile image
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hi, thoughts please, should TSH that is often 3.5 or above warrant treatment or be left as its within range ?

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Deni52 profile image
Deni52
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SeasideSusie profile image
SeasideSusieRemembering

Deni2

In some countries hypothyroidism is diagnosed when TSH reaches 3. Here in the UK we usually have to wait until it reaches 10.

However, testing TSH alone is not enough, ideally you also need FT4, FT3 and thyroid antibodies. If TSH is normal, low or slightly elevated with a low FT4 that can suggest Central Hypothyroidism where the problem lies with the pituitary or the hypothalamus.

Deni52 profile image
Deni52 in reply to SeasideSusie

why isnt a full test automatically done? I saw a new doctor who said he would of started treatment because it keeps edging to the limit, thing is I had a bp med changed and haven't been right since palpatations, bit jittery, dreaming, not sleeping things that could point to new med or thyroid, I am going to see cardiologist now although an ecg was fine so I dont know what's what at the moment, just wondering if I should persue a more thorough test I presume different labs/areas read tests different ?

SeasideSusie profile image
SeasideSusieRemembering in reply to Deni52

A full test isn't done here in the UK for a couple of reasons. The NHS don't want to spend money. Doctors are taught that TSH is the only test that matters (which, of course, is nonsense). The NHS has recently introduced a new "service" whereby you can buy your own, more thorough test with an approved lab, the result of which they will accept, profit goes to the NHS.

designweek.co.uk/issues/3-9...

monitormyhealth.org.uk/

monitormyhealth.org.uk/thyr...

So it seems that they are happy for you to pay for full testing and will accept the results if done with that lab but wont do the full test themselves. To buy this test yourself costs £29 for TSH, FT4 and FT3. For the NHS to do these tests costs around 92p per test I believe.

I don't know if your change of BP med has any bearing at all but for future reference we advise doing all thyroid tests as follows :

* No later than 9am (TSH is highest early morning and lowers throughout the day).

* Fast overnight from evening meal and drink water only before the test (eating can lower TSH and coffee affects TSH).

If your TSH continues to rise then I'd ask for full testing.

Deni52 profile image
Deni52 in reply to SeasideSusie

how do you get test is it through your GP and can they refuse?

SeasideSusie profile image
SeasideSusieRemembering in reply to Deni52

Are you asking about Monitor My Health? If so you arrange it yourself, you buy it through the link I posted above.

Deni52 profile image
Deni52 in reply to SeasideSusie

it seems straight forward my question has to be 600 what of blood lol I would be fortunate to get a smudge out !

SeasideSusie profile image
SeasideSusieRemembering in reply to Deni52

The tube is a "microtainer" and the 600 mark on the tube is for 0.6ml of blood. A teaspoon holds 5ml so you require something like 1/8th of a teaspoon.

Deni52 profile image
Deni52 in reply to SeasideSusie

phew, think I would still struggle I dont part with it easily but what has to be done has to be done and I have 10 digits, thank you for the information.

Margjeans profile image
Margjeans in reply to Deni52

If you drink water before test will be easier

TSH110 profile image
TSH110 in reply to Margjeans

Not in my case I just can’t get a sample with a finger prick.

TSH110 profile image
TSH110 in reply to SeasideSusie

Interesting to know this - even if in my opinion it is immoral.

helvella profile image
helvellaAdministratorThyroid UK in reply to Deni52

why isnt a full test automatically done?

Cost seems to be the primary reason. There are several papers of recent vintage which proclaim how they have reduced the number of thyroid tests they do in a hospital/region/country. I've never seen one that says it helps the patient but they all say it costs less.

A second reason is, possibly, that few doctors appear to understand the meaning of FT4 and FT3.

Deni52 profile image
Deni52 in reply to helvella

ok, must admit I haven't fully got an understanding of the readings myself but as no one wants to be on meds anyway you would think checking more thoroughly would work out cheaper!

TSH110 profile image
TSH110 in reply to Deni52

Quite - but logic does not apply where treatment for hypothyroidism is concerned 🙄

SlowDragon profile image
SlowDragonAdministrator

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

About 80- 90% of primary hypothyroidism is due to autoimmune thyroid disease

Ask GP to test vitamin levels

You will need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative or to test FT3

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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...

For thyroid including antibodies and vitamins

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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Christineblue profile image
Christineblue

Awe it's tough trying to get our UK Drs to do all the tests, in my experience having had two years of trying to get a proper diagnosis I had to go private to have Adrenals, Thyroid and Vitamins done. My diagnosis was low Vit D, low B12, low Iron, my Endo prescribed loading doses of Vit D and a maintenance dose for life, Dr prescribed B12 and Iron. My Thyroid TPO antibodies were positive at 500 with TSH range from 3.03 to 6, I have been monitored every three months with blood tests for TSH, FT4 and FT3, on one of my tests my FT4 fell below the range and TSH was 6 so Dr gave me a trial of 25mcg Levothyroxine I wasn't good on them gave me headaches every day for two months but on the next tests FT4 was in range and TSH was 4 so Dr took me off Levo, they get concerned that we can go from hypo to hyper, My TSH went down to 3.3 and now they only request bloods every 6 months and won't request FT4 and FT3 as they say the labs will automatically do them if TSH is high but I don't think this is acceptable.

My diagnosis is Hashimotos Thyroiditis which they call Autoimmune Thyroid Disease but sub clinical because I have positive TPO antibodies.

The advice from our lovely members on here gave me the confidence to keep on at my Dr but sometimes it's not their fault if tests requested are not done as the labs put notes on the results not to keep testing. Hope you get answers, the new system for testing through private NHS may be worth it as Dr will believe those results.

Deni52 profile image
Deni52 in reply to Christineblue

I cant believe it is such a nightmare for people to be diagnosed correctly, at the end if the day it is what it is people dont choose to have health issues far from it. I guess Doctors dont inform you about private testing either maybe because nhs will have to pay towards meds. Makes me think hang on a while and pray things improve. 🤷‍♀️

TSH110 profile image
TSH110 in reply to Deni52

We have done a lot of praying - it’s still an utter shambles - learn as much as you can about your condition and how to manage it -often we are on our own bar the forum here.

SlowDragon profile image
SlowDragonAdministrator in reply to Christineblue

Christineblue

healthunlocked.com/thyroidu...

Your results show you should be on Levothyroxine....25mcg is ridiculously small dose and frequently makes symptoms worse. You needed 25mcg dose increase in Levothyroxine...and bloods retested 6-8 weeks later

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Getting full Thyroid and vitamin testing via Medichecks or Blue Horizon is next step

Magnesium was below range, common with vitamin D deficiency

Are you supplementing magnesium?

Find a better GP

carlaFedUP profile image
carlaFedUP

usually under 2 is better you need your free t3 and t4 checked its all based on symptoms I went on thyroid low dose with a tsh of 3.4

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