Thyroid Values: I have taken levothyroxine for... - Thyroid UK

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Thyroid Values

Hollyminou profile image
18 Replies

I have taken levothyroxine for over 20 years I take 125mcgs daily. For two years I have had worsening symptoms of hypothyroidism despite my values being "normal". I recently started to have anxiety attacks for no reason and my pulse rate has been as low as 39bpm average is 55. ^ months ago I suffered a blackout which ended in me falling from a height of 4ft fractured my cheek and eye bone plus a lot of soft tissue damage. My TSH is 1.07 is this too low? Does anyone have any advice to offer me please. Carol

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Hollyminou
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Just testing TSH is completely inadequate

You may be under medicated and/or low vitamin levels

Is the cause of your hypothyroidism autoimmune thyroid disease diagnosed by high thyroid antibodies ?

Low heart rate suggests under medicated and/or poor conversion of Ft4 (levothyroxine) into Ft3 (active hormone)

Approx how old are you

Things often go a bit haywire around menopause

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

Bloods should be retested 6-8 weeks after any 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

What vitamin supplements are you currently taking?

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

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 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

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 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

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

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

Please add any other results

Or come back with new post once you get results

Hollyminou profile image
Hollyminou in reply toSlowDragon

Thank you for the reply which is very helpful. I am 72yrs if age I also have osteoporosis so take medication for that, also osteoarthritis. I.take pantaprazole for hiatus hernia which is poorly controlled despite medication . I didn't realise not to take my Thyroxine prior to having bloods taken, I have always been on Levothyroxine , I have previously been on a dose of 175mcg. I will have a private blood test taken ( pity I have retired from nursing) I was just concerned re blackout I had and if it could be anything to do with my thyroid . Once again thank you very much for the reply

SlowDragon profile image
SlowDragonAdministrator in reply toHollyminou

Most hypothyroid patients have LOW stomach acid, virtually identical symptoms to high stomach acid

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

Test for stomach acid levels

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi like Omeprazole will lower vitamin levels even further

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...

Low vitamin levels tend to lower TSH

As TSH is (inappropriately) all that’s tested this frequently leads to incorrect dose reduction in levothyroxine

BlueKeith profile image
BlueKeith in reply toSlowDragon

I was on lansoprazole for a year for my stomach problems and when they realised I had hypothyroidism they said I probably had low stomach acid not high and this could have affected vitamin levels too.

Capella1 profile image
Capella1 in reply toBlueKeith

I had this for many yeras too. now I stop and tummy gets better!

SlowDragon profile image
SlowDragonAdministrator in reply toHollyminou

Do you always test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand

Hollyminou profile image
Hollyminou in reply toSlowDragon

Do you mean take my thyroxine? Due to interactions with other drugs I take me thyroxine before I go to bed. Have always been on Levothyroxine.

SlowDragon profile image
SlowDragonAdministrator in reply toHollyminou

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

Hollyminou profile image
Hollyminou in reply toSlowDragon

Not sure brand of levothyroxine I take. The reason I take thyroxine at night was because I was looking at how I could remove the problems I was having. Realised that accrete 'D3 Alendronate and pantaprazole had to be taken four hours apart hence reason I take them as late as possible at might

SlowDragon profile image
SlowDragonAdministrator in reply toHollyminou

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.

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

Teva, or Aristo (100mcg only) are the only lactose free tablets

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...

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.

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).

Hollyminou profile image
Hollyminou in reply toSlowDragon

I lived in the Netherlands for '7yrs and medication is dictated by the insurance company , they did on occasions change mine so I just paid the difference in price to keep on same drug

SlowDragon profile image
SlowDragonAdministrator

Medichecks on offer if order today

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Notice you have CKD on profile

Being under medicated for thyroid and having Low Ft3 can affect kidney function leading to low GFR

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

Improving low thyroid levels may improve kidney function

Hollyminou profile image
Hollyminou in reply toSlowDragon

My egfr has been 59 for awhile but no-one has commented on it till I changed GP who recently took my bloods, twice actually, advised I have them done 6monthly. O wasn't that concerned to be honest as my husband has a egfr of 34 and he is OK, having said that he has never been unwell in his life nor does he have any chronic health issues. I do take on board what you say, never realised my thyroid could cause other problems.

Re blackout I had and several eggs none of which has showed up any arrhythmia just bradycardia, I just have a feeling it has something to do with my thyroid

SlowDragon profile image
SlowDragonAdministrator in reply toHollyminou

Extremely common for conversion of levothyroxine to get worse as we get older

Especially if vitamin levels aren’t OPTIMAL

Very common to have lower vitamin levels as we get older too

What vitamin supplements are you currently taking

Come back with new post once you get results

jendwall profile image
jendwall in reply toSlowDragon

I was going to ask what specifically changes as you get closer to menopause. Thanks for listing these. Anything else women should pay particular attention to other than vitamin levels, stomach acid, and of course thyroid levels?

Hashihouseman profile image
Hashihouseman

The most obvious issue from what you say is the likely reduced absorption of levothyroxine because of its interaction with the pantoprazole (drugs.com/drug-interactions.... Testing needs to include ft3 ft4 as well as TSH, without that you’re running blind since your ok TSH may be an anomaly from timing in relation to levothyroxine and or a discrepancy with this and your systems relationship between TSH and actual thyroid hormones in the blood and in organ tissues (where they really matter). Only repeated same time of day testing at least 4 hrs from levothyroxine over several months will shed light on this. Then you could simply increase your replacement of levothyroxine….. Notwithstanding all that you could also need to improve t4 - t3 conversion and ameliorate anomalies in TSH levels by splitting your levothyroxine dose into 4 or even 5 doses spread through the day (and night if convenient). The normal thyroidal supply of t4 is roughly stable through 24 hrs never in one or even two big doses at once to cover 24hrs demands - it makes sense to mimic this for many reasons. The reason people don’t is lack of convenience and concern about absorption which is very wrong headed!….. we (usually) eat and drink more than once over 24 hrs and effective absorption is simply part of dose titration. In other words if absorption is less by splitting doses through the day (therefore some being non-fasted) compared to single fasted doses you would gradually increase the overall dose until symptoms (and blood indicators) resolved. It’s perverse to take a single dose just to maximise absorption when you consider that the amount of t4 flooding the body in the hours after a single dose is physiologically excessive and causes many negative feedback issues as the body tries to maintain homeostasis - maybe a good analogy is blood sugar spikes after too much fast release carbs and we know this is bad for the hormonal management of blood sugar with many pathological implications. From my own experience as well as the biology of it all I suspect levothyroxine is in the same league as sugar in the way the body is best fed by it once we depend upon an external supply!

Kauaii profile image
Kauaii

It sounds to me like you might have adrenal problems which often go together with hypothyroidism. Adrenal issues can cause you to feel faint.

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