TSH LEVELS: I after some advice on two points... - Thyroid UK

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TSH LEVELS

Macca1 profile image
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I after some advice on two points. Firstly how do hypothyroid sufferers fair with taking statins? I’m arthritic as well as suffering from hypothyroidism Don’t want to take statins if it makes me ache more! Has anyone on site taken or take statins successfully??

Secondly just had a TSH test. My levels were 0.16. So I suspect Dr will want to adjust medication. I’ve been on this level of 100 mg levothyroxine for at least 9 years. Looking back over my TSH results they seem to have fluctuated over the years falling to 0.1 at their lowest but then rising to within ‘Normal’ levels quite quickly

Could there be other things afoot than just TSH? I’m wondering whether it was because I didn’t take medication for 26 hours before test or if my severe GERD could be affecting absorption. Normally I take pills at night but had taken them in the morning for about 5 days prior to test

Any suggestions or thoughts would be really helpful. I don’t want the Dr to stop my dosage now without knowing why it’s so low and certainly not without testing T3.

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PurpleNails profile image
PurpleNailsAdministrator

welcome to forum

Are you in UK?

Often if FT3 is low cholesterol is high, if someone is initially diagnosed with hypothyroidism statins should not be started until level are improved.

You are not newly diagnosed as been on levo for 9 years but testing only TSH is not reliable. 

You need FT4 & FT3 tested.  TSH can be low for lots of reason & it will not be an accurate reflection of thyroid hormones.  

100mcg isn’t a high dose are you very petite? A approximate guide is 1.6mcg per 1kg of weight.  

Your profile notes reflux.  Hypothyroid often suffer with low stomach acid, causes poor absorption of nutrients & digestion issues…. Doctors automatically assume high acid & treat with PPIs. This has issues for those who are hypothyroid.

Many arrange private tests to find out is FT3 and key nutrients folate,ferritin, B12 & vitamin D are optimal - levo wont work well if these are low. 

Do you always have same brand of Levo?  & take well away for food / supplements & other medications.  

Do you test in a consistently? 

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously before retest 

D - Delay replacement dose on day of test (take after blood draw)

 E - Early morning appointment. (Book as close to 09.00 as possible) 

F - Fast overnight.  This can have a slight impact.  Drink lots of water

SeasideSusie profile image
SeasideSusieRemembering

Macca1

Statins aren't a good idea for females of for hypo patients. Here is what the NHS says:

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Is your GP offering you statins? Is your cholesterol high, is that why? High cholesterol is a symptom of hypothyroidism/under medication and may resolve when optimally medicated.

Regarding TSH, this varies throughout the day, see graph so to get an accurate result and be able to compare each time you're tested this is our advice:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, sas shown in the graph, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm.

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks 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, split dose and 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 3-7 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).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

So if you haven't always done your test at the same time under the same conditions then that could be the cause of your fluctuating results.

As TSH is a pituitary signal, not a thyroid hormone, doctors shouldn't adjust dose by TSH, they should test TSH, FT4 and FT3 all together, T4 and T3 being the thyroid hormones which tell us our thyroud status. If you feel well and GP wants to reduce dose based on TSH level then refuse and say you want FT4 and FT3 tested first, it's the FT3 that tells us if we are overmedicated, and of course they should take any symptoms into account as well.

We Hypos need optimal key nutrient levels for thyroid hormone to work properly so it's worth testing Vit D, B12, Folate and Ferritin. Your GP may be willing to test these so do post results/ranges for comment. You can always use one of our recommended private labs if GP wont test.

tattybogle profile image
tattybogle

Hi Macca1

Some info here about statins to be going on with until others reply : healthunlocked.com/thyroidu... statins-get-informed-and-know-the-risks

the 26 hrs gap from levo would not have lowered TSH . no.

taking Levo in the morning for 5 days rather than at night would not have lowered TSH either,.. if that is what you meant?

if you meant you took some other pills in the morning (with levo) that may have affected absorption ?? .........then if they did affect absorption ,the effect would be absorbing less T4 for 5 days and that would mean TSH would go up , not down (but in reality 5 days is not really long enough for that sort of effect on TSH to show up) So again this is not an explanation for TSH being low /lower than usual .

(just in case you don't know ~ TSH is higher in the morning and lower in the middle of the afternoon .. are all your TSH test done at a similar time of day ? .. to get highest TSH you should test about 9 am and don't have breakfast before test).

TSH 0.16 is below range but not anywhere near low enough to cause concern if you feel ok on that dose and fT4 and FT3 are in range. anything over about 0.04 is actually fine from a risk point of view .. but you will have usually have to argue this point with the GP to get them to continue to prescribe at this level.

See this post , it has all the evidence you need : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

Macca1 profile image
Macca1 in reply totattybogle

That is a really useful link. Thank you. I will certainly arm myself with the info It is also quite reassuring. Thank you

JennyC2 profile image
JennyC2 in reply totattybogle

What are the risks if TSH is below 0.04 please?

Jx

tattybogle profile image
tattybogle in reply toJennyC2

healthunlocked.com/thyroidu...

One study found Cardiovascular Disease, Dysrhythmias , and Fractures were increased in patients with TSH below 0.04 (on levo)... however that 0.04 was an arbitrary number , it's just where that study chose to draw the line between 'low but not supressed' and 'supressed'.. they could have equally well chosen 0.05/6 or 0.02/3 .. so in reality 0.04 is not the magic number...... Also that study did not have any data on fT4 measurements so it can't prove that this increase in risks was actually due to their low TSH ,or whether those patients with fractures/ heart issues also had relatively higher/ or even slightly over range fT4 / fT3 levels.

Another study chose to draw that line at 0.01 and found that patients (on levo) with TSH between 0.01 and 0.5 did have increased incidence of 'cardiovascular mortality' (dying from stroke etc) when compared to TSH 'in range. .........This study apparently did account for fT4 levels , but it is difficult to be sure how they did the maths, so i'm still not 100% sure that the ones who died JUST had a low TSH, or if they also had a high fT4 .

It would be very interesting to know what their results would have shown if they had chosen to draw the line a little higher at eg 0.04 / 0.05 ish..personally i suspect their results would then have agreed more closely with the first study.. ie TSH over 0.04 having no greater risk than TSH in range.

JennyC2 profile image
JennyC2 in reply totattybogle

Many thanks

My TSH has been below 0.04, now up to 0.05. Both T3+T4 are mid range. Guess I need to go with doctor’s advice and try to raise TSH but am nervous about how reducing dosage of T3 and/or T4 will make me feel.

Jxx

SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking

ESSENTIAL to test vitamin D, folate, ferritin and B12 levels

Are you taking any medication for GERD, if yes….what exactly

Any PPI like omeprazole or Lansoprazole will frequently lower vitamin levels

Just testing TSH is useless

you need TSH, Ft4 and Ft3 tested together plus all four vitamins

Macca1 profile image
Macca1 in reply toSlowDragon

Thank you for your reply. I was put on Lanzaprozol but don’t like taking it. (Side effects) I do know about low stomach acids due to hypothyroidism. I am about to start some digestive enzymes but my GERD has been really bad the past few months. Probably made worse by hiatus hernia and weight gain. Sleeping sitting up helps and I don’t eat anything after about 6 in the evening. I read somewhere that if you take a PPI and then stop the symptoms come back with a vengeance! I take levo at night so it has longer to be absorbed into digestive system without food. And so I can have a cup of tea in the morning! Ha ha

SlowDragon profile image
SlowDragonAdministrator in reply toMacca1

Come back with new post once you get vitamin test results

Always worth trying strictly gluten free and/or dairy free diet too ……once vitamin levels are tested and at optimal levels

Macca1 profile image
Macca1 in reply toSlowDragon

Will do. Many thanks

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