Advice please, recently diagnosed with underact... - Thyroid UK

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Advice please, recently diagnosed with underactive thyroid.

10 Replies

Hi, I was started on 50mcg levothyroxine daily a few months ago which was then increased to 75mcg after I spoke with the doctor (GP), initially I was told that my levels were ok by the receptionist but discovered my TSH was still slightly elevated so asked for a doctor to contact me. I have now had the results of the follow up blood test and the TSH is within normal parameters but they didn’t request free thyroxine. I have been told no further action is required. I am feeling much better than before treatment but still feel tired even after a good nights sleep.

Can they assess with just the TSH?

I have also complained to the doctor many times that I have an irritating cough, even before covid was heard of, which had recently got worse and I was short of breath on exertion. I’ve had a chest X-ray, normal. And because I sometimes feel like food gets stuck when eating, causing me discomfort, they did a gastroscope , again normal.

I have read that these could also be symptoms of hypothyroidism, not sure what to do or where to get advice.

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10 Replies
SlowDragon profile image
SlowDragonAdministrator

No just testing TSH is completely inadequate …..but all many U.K. patients now get

What is TSH result

Was test done early morning

Which brand of levothyroxine are you currently taking

Do you always get same brand

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

Have you had thyroid antibodies tested or vitamins?

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before 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

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...

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

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...

Approx how much do you weigh in kilo

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.

in reply to SlowDragon

The brand is Teva UK ltd and has not changedBloods taken around 9.20 am.

Results from 6th April,

Creatinine 88,

Free thyroxine T4 11.1

CRP 16

Calcium 2.32- corrected 2.40

Iron 13.3, iron saturation 21 (15-40)

TSH 4.3

Serum Folate 3.6 (3.9-26.8)

Started 50mcg.

Bloods taken 8th June.

Free T4 12.7 (12.0-22)

TSH 4.6 (0.27-4.2)

Thyroxine increased to 75mcg but only after talking directly with doctor as documented border.I’ve no further action needed.

Bloods taken 10th August

TSH 2.9 (0.27-4.2)

Vit B12 308 (197-771)

Folate 20. (3.9-26.8) after supplements for 2 months, stopped 1 week before blood test.

Take biotin 12000mcg daily but stopped a week before last blood test.

SlowDragon profile image
SlowDragonAdministrator in reply to

Teva brand upsets many people

As your TSH is over 2 push GP to increase to 100mcg daily

Suggest you try different brand on 100mcg….unless you know you are lactose intolerant and on dairy free diet

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)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long

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

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

Accord only make 50mcg and 100mcg tablets

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

beware 25mcg Northstar is Teva

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

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.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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

Good you knew to.stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

SlowDragon profile image
SlowDragonAdministrator in reply to

No thyroid antibodies tested yet?

You need vitamin D tested

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

B12 is too low

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

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 continue separate B12

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply to

CRP needs retesting as was presumably over range

Full iron panel test including ferritin too

If thyroid antibodies are high, will need coeliac blood test as well below considering starting strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

Persistent cough can be

Lactose intolerance, very common to develop lactose intolerance and/or gluten intolerance with autoimmune thyroid disease

Could be acid reflux, low stomach acid common when hypothyroid or if left under medicated on too low a dose levothyroxine

Food getting stuck suggests goitre

Request ultrasound scan of thyroid

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

in reply to SlowDragon

I have had a small hiatus hernia and been on PPIs for 20+ years.

SlowDragon profile image
SlowDragonAdministrator in reply to

PPI tend to cause low vitamin levels

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

GP should test iron, ferritin, magnesium, B12 annually

nellie237 profile image
nellie237 in reply to

Hi Jac,

I have a fixed hiatus hernia dx 2009, and was on Lansop until 2021 for acid reflux. Various visits to the GP over the years for nausea/dyspepsia etc just resulted in an increase to the maximum dose. It seems that once you've been dx with a hernia......all problems stem from it.

I was dx coeliac in 2020, and finally came off the PPI's in March 2021 (apart from a 2-3 month period earlier this year). Mostly I am now OK without them, although I had some chilli/coriander prawns from M&S last week, and boy did they set it off for 24hrs. I guess that I'm gradually learning what I can/can't have in relation to the hernia, which was impossible to do when I didn't know I was coeliac.

There is all the advice about foods to avoid/not eating late/small meals/books under the bed, and if it doesn't help........the GP assumes that you are non-compliant.

Did you know that your GP should check Magnesium when on PPI's...........I didn't. I know that it's not a reliable marker, but that's not the point.

Monitoring of patient parametersFor all proton pump inhibitors

Measurement of serum-magnesium concentrations should be considered before and during prolonged treatment with a proton pump inhibitor, especially when used with other drugs that cause hypomagnesaemia or with digoxin.bnf.nice.org.uk/drugs/lanso...

SlowDragon profile image
SlowDragonAdministrator

Essential to test vitamin levels with hypothyroidism

But, especially if been on PPI more than 6 weeks

Poor balance often low B12

Hairloss frequently low iron/ferritin

Come back with new post once you get full thyroid and vitamin results

Push GP to test vitamin D, folate, B12, magnesium and full iron panel test for anaemia including ferritin

Or test privately

Approx how much do you weigh in kilo

You have been on 100mcg levothyroxine at least 2 months? ……..may need next increase in dose now

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