TSH 3.88: Hi My recent blood test result showed... - Thyroid UK

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TSH 3.88

Rarah11 profile image
28 Replies

Hi

My recent blood test result showed my TSH is 3.88 and the receptionist said the doctor had left a note saying “tell patient normal” (which is what they always say).

My question is…is it normal? I had a partial thyroidectomy in 2001 and have been on thyroxine ever since. Lately I’ve been struggling with fatigue, weight gain, poor sleep…

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Rarah11 profile image
Rarah11
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28 Replies
TiggerMe profile image
TiggerMe

Welcome aboard

'Normal' is the standard fob off... you would be looking to get nearer a TSH of 1 so you need to request an increase... what is your current dose / weight... don't suppose you even got a fT4 result? Have you had your folate, B12, Vit D and ferritin levels checked recently?

Ideally you need to get on and do a private blood test which will give you a much more rounded set of results and then we can come up with a plan of action... if you don't know you fT3 (active hormone) then you really are being treated by guess work 'normal for GP's'

Rarah11 profile image
Rarah11 in reply to TiggerMe

Thanks so much for this informative reply! I have no idea on any other levels. This is my first blood test since February 2023 (my TSH then was 3.25). Blood test results go back to 2007 and show varying results…

TSH results
TiggerMe profile image
TiggerMe in reply to Rarah11

Brace yourself you are in a steep learning curve Forum 🤗 Do you get your blood tests pre 9am fasted, water only and 24 hours after last dose?

Rarah11 profile image
Rarah11 in reply to TiggerMe

Erm no. Never have I ever had any of those things said to me. I had a partial thyroidectomy in 2001 and so I’ve been going through this a looonnnnggggg time 😫

TiggerMe profile image
TiggerMe in reply to Rarah11

It comes as a shock how appallingly we are treated ☹️

Chances are your TSH is even higher then as it peaks around 9am then drops off

If you are able to afford a private test either Monitor My Health TUK10 discount code finger prick (just under £30) or there is Medichecks who offer more extensive and blood draw options, Randox now opening clinic in John Lewis stores... there are others, loads of information here... thyroiduk.org/testing/priva...

Rarah11 profile image
Rarah11 in reply to TiggerMe

Thank you so much!! I will definitely look into this 🤗

greygoose profile image
greygoose

No, it isn't 'normal'. But what he actually means is that it's within the so-called 'normal' range. And that's all he cares about. He wouldn't have a clue what 'normal' really is.

A truly 'normal' (euthyroid) TSH is around 1. But the TSH is not a very good indicator of thyroid status. It can be around one - or even under-range - but your thyroid hormone levels still too low. But doctors don't know that.

jesusnaranja profile image
jesusnaranja

it not normal especially on levo. Should be lower . Not over 2.

Buddy195 profile image
Buddy195Administrator

Welcome to the forum Rarah11,

So we can offer better advice, it’s good to have blood test results (with ranges in brackets) for FT4 and FT3 in addition to TSH.

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

I’m not surprised you have adverse symptoms with TSH of 3.88. What dose of Levo are you on?

Rarah11 profile image
Rarah11 in reply to Buddy195

Thank you for your helpful response. I’m currently taking 175mcg last thing at night. Here’s my T4 level from 2009 to 2022 (no idea why there’s nothing for 2023 or my recent blood test this year). my Serum b12 in June 2022 was 261 ng/l and my Serum ferritin was 125 ug/l at that date too. Does this extra information help?

T4
TiggerMe profile image
TiggerMe in reply to Rarah11

Probably no result for last year as they have stopped doing them unless your TSH is out of range... your 2022 result shows you to only be 50% through range (assuming 12-22) generally to relieve symptoms around 70% is required assuming you are converting well

Free T4 (fT4) 16.8 pmol/L (12 - 22) 48.0%

Vitamin B12 261 nmol/L (180 - 1000) 9.9%

You would really benefit from supplementing B12, generally we take a B Complex to balance the B's

Buddy195 profile image
Buddy195Administrator in reply to Rarah11

I would recommend you test privately for TSH, FT3, FT4 plus key vitamins & antibodies, for comprehensive results, prior to starting any supplements (if needed). We recommend early morning blood draw on a Mon or Tue if testing privately by post.

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you taking

Do you always get same brand levothyroxine at each prescription

Request GP increase levothyroxine by 25mcg

As you have been under medicated a long time

Initially you might want to cut 25mcg in half and only increase by 12.5mcg for 6-8 weeks

Then retest ….or increase again and definitely retest after 8 weeks

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

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

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)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

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

Are you currently taking any vitamin supplements?

Request GP test vitamin levels now

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

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 profile image
SlowDragonAdministrator

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....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Rarah11 profile image
Rarah11 in reply to SlowDragon

Wow! SlowDragon this is such helpful information! Thank you so much. My overactive thyroid was diagnosed in 1996 and in 2001 I had a partial thyroidectomy. Since then I’ve been on levothyroxine. Currently taking 175mcg last thing at night. I had COVID very badly in February 2021 and long covid. Initially I blamed the fatigue, brain fog etc on long COVID. Although things have improved since, I still don’t feel right and I’m convinced my thyroid is to blame. I will definitely look at getting those tests done that you have suggested. Many thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to Rarah11

Do you always get same brand levothyroxine at each prescription

Which brand

Low vitamin levels extremely common on levothyroxine

Exactly what vitamin supplements are you taking

Essential to retest vitamin levels at least annually

Test vitamin D twice year when supplementing

Approximately how much do you weigh in kilo

Guidelines suggest approximately 1.6mcg per kilo of your weight per day

But some people need high dose, especially if have gut Malabsorption issues

Testing

As you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Cornwaller profile image
Cornwaller

Agree with the above. Your tsh is high and as the lovely people above have indicated probably not optimal. Here's the kicker, you have Hypothyroid symptoms and this confirms that you are undermedicated and that your tsh is indeed to high for you.. A competent medic would follow this train of logic and increase your dose. Unfortunately GPs seem to no longer do clinical practice and instead read the print out from a blood test - which anyone can do.

McPammy profile image
McPammy

You are definitely under medicated with those TSH results. I had a similar issue. I checked my patient access record going back 10 years when on levothyroxine for Hashimoto’s disease. My TSH was never under 4 (range 0.35-5.50). My gp would just say normal in range. I did have many issues too. After finding this forum I quickly learnt that my TSH ideally should be around 1.00. To achieve that your T4 needs to be optimal and importantly so should your T3. T3 is not routinely checked by the NHS but it should be checked. After a terrible time with my health I was advised to seek help by thyroid uk from a private endocrinologist. I did. Oh boy what a light bulb moment. He explained that your TSH should never be over 2.5 or you’ll have symptoms. The aim is symptom free and a TSH around 1.00. It turned out I’m a very poor converter of T4 levothyroxine to the most important hormone T3. As soon as I was prescribed T3 medication also it was nothing short of a miracle for myself. The private endocrinologist dosed me correctly and now my TSH is always around 1.00 and t4 and t3 levels are optimal. I now feel years younger and full of energy when prior I was so unwell. I cannot emphasise how important it is to check all three TSH, T4 and T3. I’d advise you to get them check through the promoted private blood test company monitor my health. It’s dead easy and very quick turn around. Once the results come back put another post on here with those results and you’ll get lots more help towards your next move for better health. I didn’t know any of this prior to finding this invaluable site. I just use to believe my uneducated gp who later admitted he knew nothing about the thyroid.

Now you can educate yourself and get a better health and life. 👍

Rarah11 profile image
Rarah11 in reply to McPammy

This is amazing! Thank you so much! I can’t afford to see an endocrinologist privately…in the past, I asked my GP to make a referral but was told there’s no need as results were within the normal range. The only time I’ve seen an endocrinologist was when I was pregnant. The first time was mismanaged and my baby ended up with Thyrotoxicosis and the second time I was kept a careful eye on!! I’m so fed up of feeling the way I do…I will definitely arrange those blood tests!! Thank you

McPammy profile image
McPammy in reply to Rarah11

I’m sorry for what you’ve been through and still are going through. Yes, get that private test done. And then repost on here. Your gp in wrong and only going on NHS ranges. They are inadequate.

PoppyAsh profile image
PoppyAsh

have you tried Metavive IV.

It is the natural version of thyroxine. Many people say they do better on it. One capsule at night if readings go up then increase to two capsules.

My sons readings were 27 so he took two and has just received new Results of 3.9.

Buddy195 profile image
Buddy195Administrator in reply to PoppyAsh

Most people with hypothyroidism can address their symptoms via optimal treatment with Levothyroxine (and ensuring key thyroid vitamins are also optimal). We do not recommend members try alternative treatments unless they cannot tolerate Levothyroxine or optimal conversion cannot be achieved using this medication.

Kevz3016 profile image
Kevz3016

Hi, the fact you have systems means it's not normal, you need to fight to get a higher dose to bring your TSH below 2. It took me years to get them to suppress mine and that's the only time I feel better. Try to find some documents that help, I'm sure people on here will point you in the right direction. Try the NICE statements as well. Good luck

AustinHealeySprite profile image
AustinHealeySprite

I’m “normal” Rarah

With a TSH of 3.99. 0.55-4.78

T3 4.9. 3.5-6.5

Well that what the GP told me as I asked about my results!!!

I said they are not normal for me !!!

He started shaking his head to say no!!!!!

But after showing him a letter from Endo

Which he had on file but ignored it . He changed his mind !!

This is just to let you know you are not alone !!!

Letter from Endo posted in reply

Letter
Fernsmum profile image
Fernsmum

I have recently had my thyroid retested and was told normal (because I ask otherwise not told ) and was told normal at 5.2 , is it age related ?I'm 70 now , and tbh have never fully understood all these results etc

SlowDragon profile image
SlowDragonAdministrator in reply to Fernsmum

Fernsmum

Strongly recommend you get FULL thyroid including thyroid antibodies and vitamin testing

IBS is common hypothyroid symptom

Low vitamin levels more common as we get older

When were vitamin D, folate, B12 and ferritin last tested

What vitamin supplements are you taking

ALWAYS do 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

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

Fernsmum profile image
Fernsmum in reply to SlowDragon

Thankyou for all that information ,I had no idea I had so many options open to me ,bless you for reading my post and taking the time to write back

Fortie profile image
Fortie

I too recently had thyroid blood test - my TSH was 3.55 and my GP told me it was normal and yet prior tests were lower and he said well its how you feel - if you feel overmedicated you could drop the meds. When I checked my record re the most recent test results - it states something about a new ruling came in regarding result ranges. So now it would seem undermedicated.

I am just finishing a loading dose of Vit D but will retest TSH too, this time privately in a couple of wks.

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