Can I decide whether to go up on meds with only... - Thyroid UK

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Can I decide whether to go up on meds with only a TSH reading (GP won't do T4, T3)?

melissa-b profile image
24 Replies

Brief background - had subclinical hypothyroidism for 8+ years, started having symptoms of it recently, bloods in April showed TSH at 6.3 (range 0.3 - 5) and free T4 at 17.3 (range 12-22), and I went on a trial of 25mcg levothyroxine.

I felt like it helped the fatigue but nothing else (esp the weight gain) and GP did another blood test recently, but only looked at my TSH, which was at 4.94 (range 0.3 - 5). She said it's up to me if I want to trial 50mcg. She won't check T4/T3.

Is it okay to go up on medication if I don't know what my T4/T3 levels are? If so, how do you go up on the dosage - do you just take the 50mcg straightaway continously or up it every other day? Or should I buy a private blood test (£150-200!) to check those levels first? Thank you

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SlowDragon profile image
SlowDragonAdministrator

Yes, with TSH over 2 your under medicated…..hardly surprising as standard starter dose levothyroxine is 50mcg (unless you are over 60….in which case start on 25mcg and increase to 50mcg after 6-8 weeks)

Bloods should be retested 6-8 weeks after each dose increase

ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Ideally stick with same brand while increasing dose

Likely to need further increases in levothyroxine over coming months

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.

melissa-b profile image
melissa-b in reply to SlowDragon

Thank you so much, this is really helpful! I was offered 50mcg but I have anxiety and was nervous about trying it, so I asked for a lower dose - but the GP that I intially spoke to (who prescribed me the meds) unfortunately left, and the new GP said she didn't really know a lot about subclinicla hypothyroidism and it seemed my TSH was now in the perfectly normal range, so left it up to me... I've had two different brands from the pharmacy (don't get to choose on the NHS it seems!). I've been on it since about the 20th of April so I will try the higher dose! Thank you 😄

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin and B12 levels tested yet

What vitamin supplements are you currently taking

Also need coeliac blood test done

melissa-b profile image
melissa-b in reply to SlowDragon

I had a coeliac blood test in 2020 which came back clear! I was recently tested these: 'Serum B12 (Requested), Calcium group (Bone Profile) (Requested), Creatinine & electrolytes (Requested), CRP (Requested), Full Blood Count (Requested), Serum Ferritin (Requested), Serum Folate (Requested), FSH (Requested), HbA1c (Requested), LFT (Liver Function Tests) (Requested), LH (Requested), Prolactin (Requested), TSH (Requested), Vitamin D (Requested), Urea (Requested) ' which all came back clear (apart from the TSH!).

I stopped taking all supplements for a while because I've been forgetful, but normally I'd take a multivitamin, magnesium, vitamin D, and flaxseed omega capsules (I'm vegetarian). Are there any supplements you'd recommend?

SlowDragon profile image
SlowDragonAdministrator in reply to melissa-b

Always get actual results and ranges on all tests

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

You need results and ranges for

Vitamin D

Folate

B12

Ferritin

As vegetarian you are likely to have low B12, iron and ferritin

Recommended that vegetarians always supplement B12

Don’t start any iron supplements without getting full iron panel test for anaemia

Multivitamins are never recommended on here

Cheapest, poorly absorbed ingredients and most contain iodine not recommended for anyone on levothyroxine

melissa-b profile image
melissa-b in reply to SlowDragon

Thank you, I have the results and the ranges! They are:

Vit D: Total Vitamin D (serum) 53 nmol/L [> 50.0]

Folate: Serum folate level (42U5.) 12.4 ng/ml [3 - 18]

B12: Serum vitamin B12 level (XE2pf) 580 ng/L [200 - 960]

Ferritin: Serum ferritin level (XE24r) 105 ng/ml [15 - 350]

I think they are okay... I didn't realise I shouldn't have iodine or multivitamins! Thank you for letting me know

SlowDragon profile image
SlowDragonAdministrator in reply to melissa-b

Vitamin D would be better at least around 80nmol

Instead of a multivitamin, consider adding a good quality vitamin B complex, one with folate in, not folic acid

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

You might only need one every other day

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and separate B12

No point testing thyroid levels yet …..until TSH is at least below 2

melissa-b profile image
melissa-b in reply to SlowDragon

thank you so much for your help! so is it okay to keep taking the magnesium tablets and flaxseed capsules - just switch the multivitamin out for a b complex tablet? thank you again <3

SlowDragon profile image
SlowDragonAdministrator in reply to melissa-b

Magnesium supplements and vitamin D tablets must be minimum of 4 hours away from levothyroxine

Magnesium usually taken afternoon or evening as it’s relaxing and can help improve sleep

B vitamins best taken in morning as stimulating, at least 2 hours away from levothyroxine

SeasideSusie profile image
SeasideSusieRemembering

melissa-b

25mcg is a very small starter dose and usually reserved for children, the elderly or those with a heart condition. Normal starter dose is 50mcg.

25mcg isn't likely to make much difference, as you can see from your TSH which has barely moved. It starts to switch off your own thyroxine production but it's not enough to replace it and then add some, so hardly surprising nothing much has changed. It will take some time for you to be optimally medicated and for weight loss to happen.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your FT4 wasn't too bad upon diagnosis, it was 53% through range, but it's the FT3 result which is most important, T3 is the active hormone which every cell in our bodies need and it's low T3 that causes symptoms.

If you decide to increase your dose you can go straight from 25mcg to 50mcg daily and there should be no problem.

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

You don't need to pay £150-£200 for a test. Depending on what you want to test then the basic TSH, FT4 and FT3 costs £26.10 with a fingerprick test done with Monitor My Health, which is an NHS hospital in Exeter which offers this test to the general public. Details here:

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

If you want the basic thyroid test mentioned above, plus thyroid antibodies, plus the key nutrients (always recommended to test the nutrients because we need optimal nutrient levels for thyroid hormone to work properly) then you'd be looking at

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

If you want to do a fingerprick test and would like some tips on how best to do it, please ask and I will post them.

melissa-b profile image
melissa-b in reply to SeasideSusie

Thank you very much, this is so helpful! I've never had my T3 tested so it would be interesting to see what level it was at... The Medichecks test looks really good, I'm very squeamish so I'd have to travel to Cheltenham to get my blood taken but I think it'll be worth it...

pennyannie profile image
pennyannie in reply to melissa-b

Hello there :

You can arrange a nurse ' home visit ' when you book through Medichecks and this takes the stress out of the whole situation :

You pay extra for this service and you should be able to see this option when you book :

You will get a phone call from the nurse to arrange when she should visit you at home and just arrange an early as possible, morning appointment towards the beginning of the week so your bloods are not left sitting over the weekend in a post box or laboratory.

melissa-b profile image
melissa-b in reply to pennyannie

thank you!

There’s a company called Monitor My Health which do TSH, FT3 and FT4 testing for only £29. They use an NHS lab to test, as it’s so cheap you could get them done through them there to give you peace of mind in your decision,

in reply to

Also they post it to you and you return it by post so no need to travel.

melissa-b profile image
melissa-b in reply to

thank you!

Starling87 profile image
Starling87

I hope you feel better after the increase!

I'm sure you are aware but just in case: it'll take a few weeks for the new dose to settle into your body, so be kind and patient with yourself on the days it feels a bit rough.

🌷

melissa-b profile image
melissa-b in reply to Starling87

thank you so much, I really hope the higher dose will help <3

Starling87 profile image
Starling87 in reply to melissa-b

There's no doubt in my mind that you'll eventually feel better, this forum made me realise I was undermedicated as well and my energy levels plus weight improved a lot once I got on the right dose.

It's a bumpy road, but there's a light at the end of the tunnel 😊

Persevere99 profile image
Persevere99

Hi

NHS do Monitor My Health - finger prick tests

Thyroid for example - TSH, FT3 and FT4 for £29

All the best

Persevere99

melissa-b profile image
melissa-b in reply to Persevere99

thank you!

silverbelle51 profile image
silverbelle51

Is there any problem with your adrenal or has that even been checked ?

melissa-b profile image
melissa-b in reply to silverbelle51

I'm not sure! what test do they do for adrenal? I had these tested so far via blood test (not sure what they're all for...): 'Serum B12 (Requested), Calcium group (Bone Profile) (Requested), Creatinine & electrolytes (Requested), CRP (Requested), Full Blood Count (Requested), Serum Ferritin (Requested), Serum Folate (Requested), FSH (Requested), HbA1c (Requested), LFT (Liver Function Tests) (Requested), LH (Requested), Prolactin (Requested), TSH (Requested), Vitamin D (Requested), Urea (Requested)

Lotttie4 profile image
Lotttie4

Totally crazy. I have had a total thyroidectomy, so my levels really can’t change, have been on the same level of meds now for over 5 years. I have been quite unwell with Rheumatoid Arthritis flare. My TSH is hardly detected, my T3 and T4 are ok. Doctors are rather bemused.

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