TSH Test 1st Timer

[ElleQ90]

Hi all. Looking for some advice please on these test results. TSH - 7.6 (range 0.35-5.00) and Free T4 - 9.4 (range 9.0-21.0). GP has stated to wait another 3 months and re-test to confirm or exclude hypo diagnosis. Symptoms wise I am constantly lethargic, periods are sparse and very irregular or not coming at all, hair loss and I have a lump to the right of my neck also (this was checked in 2021 and GP said it was not thyroid related however). Is it normal with results like mine to be asked to re-test in 3 months without any initial treatment offered? My mum has hypothyroidism and is on levothyroxine also. Many thanks for any advice.

[TiggerMe Ambassador]

Welcome aboard, irritatingly yes this is standard procedure to have 2 abnormal tests just to be sure it isn't a blip but you would have thought that with your family history and a lump they would at least send you for a scan?

Is your Mum hypo due to autoimmune attack do you know?

At your next test be sure to ask for antibodies to be tested so you will know if yours is autoimmune, they say it makes no difference to treatment which is true but changes to diet can help

Have they also tested your ferritin, folate, Vit D and B12 as they are very likely to be low too

[ElleQ90 in reply to TiggerMe]

Hi there. I don't believe my mum has ever been tested for antibodies to determine whether her hypothyroidism is autoimmune or not. Since reading the list of symptoms I also think my nana, mums mum, has also had hypothyroidism so it might be the case. I have 2 sons and will request that Dr tests so that I'm aware for both of them too so thank you.

Are endocrinology referrals made once a hypothyroidism diagnosis is given or do GPs tend to manage within the practise?

I really just want to feel better above all else, I feel like I've been chronically tired for a good 3/4 years now and I'm sick of it now, plus the issues with my cycle are v concerning as I'm only 33. Thanks for your comments 😊

[TiggerMe Ambassador in reply to ElleQ90]

You'll be under the treatment of the GP and hopefully if you get along well with T4 you won't need to see an Endo, I doubt if they will test your boys unless they are showing any symptoms? Certainly worth asking though 🤗

[SlowDragon Administrator]

Welcome to the forum

You need two separate blood tests 6 weeks apart with TSH over 5 before GP will start you on Levo

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

You could get vitamin levels tested now ….

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Request GP test vitamin levels and thyroid antibodies …..now ideally ….but definitely at next test

as your mum is hypo it’s likely autoimmune and autoimmune disease often runs in families

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking ….if any

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and 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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[SlowDragon Administrator]

Is it normal with results like mine to be asked to re-test in 3 months without any initial treatment offered?

You only need wait 6 weeks…..not 3 months

[tattybogle]

This is where they get 3 months from (currrent NHS guideline for thyroid disease) :

( the word 'subclinical' in this guideline refers to blood results with TSH over range while fT4 level is still within range ..... your fT4 is (just) within range, so this is why the GP is applying this guideline to you... the 3 months is to make sure it's not a temporary problem causing the altered thyroid levels ... if symptoms are making life/ or work too difficult , you can try and persuade GP to shorten it to 6 or 8 wks , they may or may not agree )

nice.org.uk/guidance/ng145/...

"Treating subclinical hypothyroidism

1.5.2

When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3

Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4

Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

[ElleQ90]

Thanks both for your help. I currently don't take any supplements, I previously was taking B12, 10,000 iu of Vit D and Magnesium complex at night but stopped them as I started to feel worse if I'm honest. My b12, ferritin, vit D and and folate were not tested this time but I will request these at my next set of tests along with thyroid antibodies testing also.

If I am prescribed levothyroxine to help, how regularly should I get blood tests to monitor my TSH/T4 levels please? Thanks again.

[SlowDragon Administrator in reply to ElleQ90]

If I am prescribed levothyroxine to help, how regularly should I get blood tests to monitor my TSH/T4 levels please

Standard STARTER dose is 50mcg daily

Bloods are retested 6-8 weeks after any dose change

Typically dose will need slowly increasing upwards in 25mcg steps over 12-18months symptoms resolve and Ft4 is roughly 70% through range minimum

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

[ElleQ90]

Thanks again all for your comments, they're really helpful. Spoke to the GP today, she won't test me again for 12 weeks. She said she doesn't think the lump in my neck is linked to my thyroid as she said my TSH would he much higher if it was. She also checked and my TSH was last tested in January 2023 and it was 4.8, which she said was "totally normal". I've felt so crap for such a long time I've almost just accepted its normal to always feel knackered and put it down to being a mum and overworked but in reality I shouldn't feel so rotten. Here's hoping my levels are still high and can get some medication at next app