advice/opinions please

[Ozzy77]

over the last few years my TSH has always been outside reference range. The GP has normally said borderline. They have usually been 4.5 and higher but less than 10. Last year in March was 5.3, borderline. Then I had a repeat in June 2022 and it came back as 3.4 no further action which was highly unusual as I must have had at least 10 borderline ones over the years. Last week I was diagnosed with skin condition Granuloma annulare so when the GP suggested diabetes test I also asked for a thyroid test as I have noticed weight gain, tiredness during day, hair thinning, seem to constantly be battling vaginal thrush, muscle aches around elbow area. I am on HRT gel for the menopause so the GP always wants to put symptoms down to that. But whilst the HRT has helped with mood, and hot flushes it hasn’t helped anything else. Still have night sweats, low libido etc. Anyway this time the TSH level has come back as 6.9, highest it has ever been and the GP has said it is satisfactory with no repeat needed. This doesn’t seem correct. I will be telephoning on Monday to ask about it but already thinking it will be a battle to be heard. Ideally I would like to have a therapeutic trial of the thyroxine but after the GP saying my result is satisfactory I don’t think this will happen. I just want to feel normal again and even if the trial does not alleviate my symptoms at least it can be ruled out. Please let me know your thoughts. I am in the UK.

[tattybogle]

hi Ozzy

NHS need 2 TSH's that are over range / under 10 taken 3 months apart before they 'can consider' a trial.. ....since it went back down on your last test, some GP's may insist these over range tests are consecutive, and will want you to wait and repeat TSH again after 3 mths to confirm your TSH remains over range.. other GP's might be more prepared to consider it now, based on the previous history og over range TSH's.

What they definitely can do now is test your thyroid antibodies.

So ask them to Test TPOab now ....... ( Thyroid Peroxidase Antibodies) to check for autoimmune thyroid disease.. if positive this gives them more confidence that levo will eventually be needed anyway .. so they are more likely to prescribe before TSH gets up to 10.

NHS guidelines here :

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

1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When 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

1.5.3Consider 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.

1.5.4Consider 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. "

[tattybogle in reply to tattybogle]

p.s important . TSH is higher early am and fall lower over thr morning untill it';s lowerst around 1-3pm . then slowly rises again.

So when looking for a diagnosis...and to keep TSH test conditions consistent , make sure you get an early a.m. blood draw .9 am ish .

NHS don't accept this is necessary for thyroid tests so they won't usually offer/ agree to give you an early slot ... rather than argue, it's easiest just to say you can't make it any later due to work etc .

Also, eating Breakfast can lower TSH by up to 30% in some people .. so for highest TSH and for consistency , have water only until after test .

[Ozzy77 in reply to tattybogle]

thanks for helping. I have just checked back and I can see in Nov 2020 that I had a test for tsh which was 4.7 and the tpo was 33. It’s said borderline to repeat but they never tested again for the tpo as it was within the range of 34.

[tattybogle in reply to Ozzy77]

ask them to test due to significant rise in TSH... (and hope they haven't noticed the bit about "but do not repeat TPOab's testing' )

What's the range on your TSH tests by the way ?

[Ozzy77 in reply to tattybogle]

hi, the range is 0.27 to 4.5.

I will make sure I ask about testing for the TPO due to rise in TSH.

[Ozzy77 in reply to tattybogle]

Have spoken with GP. Didn’t see a need to repeat or test for anything else including TPO. Agreed trial of the following. Levothyroxine sodium 25microgram tablets - 28 tablet - take one each morning

[DippyDame]

This GP is clueless beyond rigidly following what NHS guidelines show him.....they are just that " guidelines" yet they are frequently treated like strict rules.

There is room for GPs to use their common sense and to treat with a degree flexibility..... that's what thy were trained to do

You are hypothyroid and need to be prescribed 50mcg levothyroxine....to be re-tested after 6/8 weeks

For a start his diagnosis should include symptoms....

Re menopause...Low estrogen levels can reduce thyroglobulin which can reduce thyroid function. The consequent reduced thyroid hormone/T3 can reduce metabolism/ metabolic rate and cause symptoms

TSH is not a reliable marker...although you results indicate hypothyroidism

TSH without medication needs to sit close to 2...and if medicated close to 1

Making you wait 3 months, or whatever, for further evaluation is only prolonging your misery.

This article explains that but the NHS haven't caught on yet!

thyroidpatients.ca/2021/07/...

This next paper is written by eminent scientists/medics amongst them TUK's diogenes aka DrJohn Midgely and former TUK advisor Dr Toft.....not people to be ignored!

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

The conclusion reads...

This invites a resume of the current state of affairs.

It appears that what we are witnessing constitutes an unprecedented historic change in the diagnosis and treatment of thyroid disease, driven by over-reliance on a single laboratory parameter TSH and supported by persuasive guidelines. This has resulted in a mass experiment in disease definition and a massive swing of the pendulum from a fear of drug-induced thyrotoxicosis to the new actuality of unresolved designation of hypothyroidism. All of this has occurred in a relatively short period of time without any epidemiological monitoring of the situation. Evidence has become ephemeral and many recommendations lag behind the changing demographic patterns addressing issues that are no longer of high priority as the pendulum has already moved in the opposite direction. In a rapidly changing medical environment, guidelines have emerged as a novel though often over-promoted driver of unprecedented influence and change. Treatment choices no longer rest primarily on the personal interaction between patient and doctor but have become a mass commodity, based on the increasing use of guidelines not as advisory but obligatory for result interpretation and subsequent treatment. Contrary to all proclaimed efforts towards a more personalised medicine, this has become a regulated consumer mass market as with many other situations. This is of little benefit to patients who will continue to complain, and with some justification, that the medical profession is not listening, thereby abandoning one of its primary functions in the doctor-patient relationship.

Until the NHS accept that both FT4 and FT3 are essential markers this TSH obsession wil continue to leave patients struggling.

In your shoes I would be politely pushing to be medicated asap.....based on your symptoms, your persistent raised TSH and the info in the above links.

Good luck.

[Ozzy77 in reply to DippyDame]

Have spoken with GP. Didn’t see a need to repeat or test for anything else including TPO. Agreed trial of the following. Levothyroxine sodium 25microgram tablets - 28 tablet - take one each morning

[DippyDame in reply to Ozzy77]

Progress....

Usual starter dose is 50mcg...retest after 6 weeks ....increase should follow

Take Levo away from food and drink

[Ozzy77 in reply to DippyDame]

I may send an email saying is there a reason for prescribing 25 rather than the usual 50 starter dose. I just presumed it would be the 50 dose.

[SlowDragon Administrator]

Also request that folate, B12, ferritin and vitamin D are tested

When thyroid levels are low we frequently develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

There are two different thyroid antibodies involved with autoimmune thyroid disease

TPO - Thyroid Peroxidase antibodies

TG - Thyroglobulin antibodies

NHS only tests TG antibodies if TPO are high

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

You may need to test privately

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

ALWAYS test thyroid blood tests early morning, ideally just before 9am and only water between waking and test…..for highest TSH

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...

Only do private testing early Monday or Tuesday morning. 

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...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

With two NHS tests with TSH over range and symptoms GP could/should consider trialing levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Standard STARTER dose levothyroxine is 50mcg

[Ozzy77 in reply to SlowDragon]

Have spoken with GP. Didn’t see a need to repeat or test for anything else including TPO. Agreed trial of the following. Levothyroxine sodium 25microgram tablets - 28 tablet - take one each morning

[SlowDragon Administrator in reply to Ozzy77]

How old are you

Standard starter dose levothyroxine is 50mcg unless over 65 years old

Be aware…..Starting on low can make symptoms worse after 4-5 weeks

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Suggest you get FULL thyroid and vitamin testing now or after 6-8 weeks on Levo

ALWAYS test early and last dose levothyroxine 24 hours before test

Take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or vitamin supplements within 2 hours

[Ozzy77 in reply to SlowDragon]

I’m 55. He said to do blood test in 3 months time. Do you think I should quiz the 25 dosage. Just collected them from pharmacy and nothing was said.

[SlowDragon Administrator in reply to Ozzy77]

which brand is 25mcg tablets

See how you get on

Are you currently taking any vitamin supplements?

You could just test vitamin D now

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

We should only change one thing at a time or can’t work out what’s helping

Start Levo

Order vitamin D test and do that next week

Come back with new post once you get result

Order Medichecks test to do after 6 weeks on 25mcg levothyroxine

[Ozzy77 in reply to SlowDragon]

Hi, it’s says Levothyroxine sodium 25microgram. Then it says Wockhardt UK Ltd on the bottom of the box

I’ve emailed GP just to quiz the reason behind the dosage.

[SlowDragon Administrator in reply to Ozzy77]

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

 

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

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

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, 

 Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.

But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

suggest you start on 25mcg and see how you get on

[Ozzy77 in reply to SlowDragon]

Also think I will need to pay private for the full test and vitamin tests as he wasn’t open to any tests.

[SlowDragon Administrator]

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 near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Typically it takes 6-12 months to get levothyroxine increased slowly up to full replacement dose

[Ozzy77]

Pease see below the reply I got from my GP surgery from the nurse practitioner not from the GP who prescribed it

“The reason 25mcg dose was prescribed was because your T4 was normal and only TSH was elevated but less than 10. This means that you are not within the deficient range but the elevation of TSH suggests your body working harder to maintain this level. You do have symptoms of hypothyroidism so this is why treatment was initiated with plans to monitor with blood test. A higher dose than 25mcg daily would risk over treating you. I hope that helps. If still not clear please do get back in touch.”

[Jaydee1507 Administrator in reply to Ozzy77]

For your own reference the 25mcg stater dose is usually for the elderly or those with heart conditions and nothing to do whether your FT4 is in range or not. There's also the dosing by weight scenario too that your GP has likely never come across. These quotes are from the NICE guidelines.

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.

1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.

Anyway, probably best to pick your battles, and there will be more, but at least now you have got official acknowledgement that you have a thyroid condition and have made a start with treatment. Hurrah!

Much of being successful in feeling well with this condition is to become your own health advocate with your medical professionals. Learn as much as you can so that you are able to challenge them. Also track down the most helpful and amenable GP at your practice and try asking again for your vitamins to be checked.

[tattybogle in reply to Ozzy77]

"higher dose than 25mcg risks overmedicationg you ".... time will almost certainly prove that point of view incorrect .. you'd be hard pressed to find anyone for whom 50mcg ended up overtreating them ... might be interesting to ask this NP if they had ever come across a real life example of 50mcg levo supressing someone's TSH ,or taking their fT4 over range or causing symptoms of overmedication .. and even if they have , i bet it would be the exception rather than the rule.

eg . My TSH was 6.8 .... my TT4 was 29% through range.

I was given 50mcg for 7wks, my TSH went down to 2.9 , my TT4 rose to 52%

i was given 100mcg for 5 mths, my TSH went down to 2.5 , my TT4 rose to 68%

i was given 150mcg for 3 mths, my TSH went up to 2.7 , my T4 rose to 71%

i did eventually become overmedicated .. about a year later after i had tried taking about 175mcg for a month .... my TSH was then 0.001 and my fT4 was 36 [13-26] (189%)