Recently told I had hypothyroidism : Diagnosed... - Thyroid UK

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Recently told I had hypothyroidism

Roacher10 profile image
8 Replies

Diagnosed with Hypothyroidism back in Jan, main issues where fuzzy thinking, poor memory and insane brain fog. Also I’ve had a burning sensation on my face, legs and arms. Doctor put me on Levothyroxine 50mg and the first couple of weeks my symptoms seemed to improve, but now seem back to where they were.

Lad test blood tests after taking 50mg for 10 weeks came back as o.k?? Where can I go from here??

I also have intermittent tinnitus??

Has anyone experienced any of my symptoms as a result of being Hypothyroid? Am starting to think it might be something else causing them? Am male 39.

Thanks in advance

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Roacher10
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greygoose profile image
greygoose

Hi Roacher10, welcome to the forum.

Well, the first step it to get hold of your lab results and ranges. I very much doubt the were 'ok' on just 50 mcg levo, which is just a starter dose. But, doctors know so little about thyroid, and aren't very good at interpreting blood test results, so they think anything in-range is good. OK is not what we want, anyway. We want optimal. And if you still have symptoms, then your dose is not optimal.

Don't worry about the symptoms coming back like that. It's perfectly normal. It just means that you're ready for an increase in dose. But, looks like you're going to have to fight your doctor to get it, I'm afraid.

So, when you have your results - and if you live in the UK it's your legal right to have them - post them on here, with the ranges, and let's have a look. We can explain them to you. Oh! And, don't ask the doctor for your results, they don't like giving them. Ask the receptionist for a print-out, that's the best way. :)

SlowDragon profile image
SlowDragonAdministrator

Do you have the actual results from recent test

50mcg levothyroxine is only a starter dose

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels and thyroid antibodies if not been tested yet

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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 thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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

SlowDragon profile image
SlowDragonAdministrator

Tinnitus is extremely common when under medicated

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

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

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

What brand levothyroxine are you currently taking

Many people find different brands are not interchangeable

What vitamin supplements are you currently taking....if any

Roacher10 profile image
Roacher10 in reply toSlowDragon

Hi SlowDragon, thanks for your reply. I have just got my blood test results, which are as follows:-

When 1st Diagnosed (18th Jan 2021)

T4 - 10.80 pmol/L

TSH- 5.5 m U/L

Results having been on 50mg for 8 weeks or so (blood test 26th March 2022)

T4 - 13.8 pmol/L

TSH - 3.3 m U/L

My Doctor has said they are now falling within the normal range, she is ringing me on 20/04/2021.

Are there any further questions I should be asking or will it be a case of she won’t up my dose regardless as they now fall within normal. I note from my report that normal starts at 11 up to 23 so I guess am still on the lower end of the scale???

Thanks for any advice you can provide

SlowDragon profile image
SlowDragonAdministrator in reply toRoacher10

So you are ready for next 25mcg dose increase in levothyroxine

Please add ranges on these results

Ft4 should be towards top of range

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

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to

show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Which brand of levothyroxine are you currently taking

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If 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

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

shaws profile image
shawsAdministrator

I am sorry to make this statement "Beware of doctors" when we have a dysfunctional as they know 'nothing' at all.

They only look at the numbers on our print-out of blood test results, whereas they should concentrate more upon the patient's clinical symptoms (they know none it appears to me). They are also apt to treat a 'symptom' as not being due to hypothyroidism as they know none at all and may prescribe something other than a decent dose of levothyroxine..

Once-upon-a-time doctors knew all clinical symptoms and could diagnose a patient before he/she sat down. Not nowadays as it is all about where the TSH and it is from the pituitary gland - not the thyroid gland.

This is the procedure when getting a blood test:-

Always the very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test and take afterwards. You may have to make the appointment weeks ahead. TSH drops throughout the day.

Ask for B12, Vit D, iron, ferritin and folate as we can be deficient which also cause symptoms.

You take levothyroxine on an empty stomach, usually when we get up with one full glass of water. Wait an hour before eating.

Always get a print-out of your results for your own records and post if you have a query.

Also request B12, Vit D, iron, ferritin and folate to be tested. Everything has to be optimal.

Take levothyroxine, on an empty stomach - usually when we get up and wait an hour before eating. Some prefer a bedtime dose (if so doing - miss this if having a test next a.m. and take after test and bedtime dose the same day.

Roacher10 profile image
Roacher10

Thanks everyone I will ring the surgery to get my blood results and post on here to see if anyone can shed light on them. I have bupa with work, so do you think it would be wise at this stage to refer myself to see an endocrinologist? Or would that be premature giving am newly diagnosed

SlowDragon profile image
SlowDragonAdministrator in reply toRoacher10

First see/get appointment with GP

Request/insist 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later

Also request that vitamin D, folate, ferritin and B12 plus thyroid antibodies are tested at next test

Have the guidelines printed out on dose by weight (don’t be surprised if GP never read them)

Be prepared to push hard for next dose increase in levothyroxine

Levothyroxine doesn’t top up failing thyroid.....it replaces it

Many GP’s are clueless about how to treat ...despite levothyroxine being 2nd or 3rd most prescribed medication in U.K. and approx 2 million people in U.K. on levothyroxine

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