Advice: I was diagnosed has having a under active... - Thyroid UK

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Red14 profile image
40 Replies

I was diagnosed has having a under active thyroid in 2006, after having a miscarriage at 17 weeks in December 2005, I have been on 50mg levothyroxine since September 2006 (started on 25mg in the March 2006)

I have never had anything else tested only TSH with my GP, currently TSH is at 3.4 which I am told is in the range (but near the top of the range)

I also have a total cholesterol reading of 5.9, which I am now taking statins for (only just started these) so having a blood test for cholesterol in about 6 weeks time

I never realised that under active thyroid & Cholesterol were linked until reading some posts on here

I am 47 years old & also take HRT as well

What I would like some advice on is, what should I be asking for tests for concerning my thyroid, should my TSH be lower than 3.4

Any advice welcome Thanks

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Red14 profile image
Red14
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40 Replies
greygoose profile image
greygoose

Your TSH should be brought down to 1 or under, with 6 weekly increases of 25 mcg levo. Your doctor has been very negligent leaving you on a starter dose - 50 mcg - for 4 years! He should not be dosing by the TSH - which is what he's doing - and your TSH may be in-range but it is much too high. Just being 'in-range' is not good enough because the ranges are too wide.

Ideally you would have tested:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin.

However most doctors/labs refuse to test the FT3 - which is actually the most important number. And some doctors won't even do the FT4. You have a very bad doctor, there.

Cholesterol is usually high when FT3 is low - and it wouldn't be at all surprising if yours were low. You should not be taking statins because a) they're not recommended for hypos and b) they don't do anything for women.

High cholesterol is not a problem - it's not a disease, it's a symptom - it doesn't cause heart attacks or strokes. However statins can cause heart attacks. They can also cause diabetes, low sex hormones, low Q10, and even breat cancer. They are a very bad thing to take. But, your doctors has obviously been influenced by drug company reps and the financial incentives he gets for prescribing them. He know nothing about thyroid.

So, not only do you need an increase in dose and more testing, you also need a new doctor. This one is never going to make you well, I'm afraid.

Red14 profile image
Red14 in reply togreygoose

I have been on 50mg for 14 years, I went to the drs last year, saw a locum dr & flatly refused that anything wrong with my results just said within range, will go back to the drs & ask to be tested again & not just TSH, knowledge is everything, just knowing what I should be asking for

greygoose profile image
greygoose in reply toRed14

Oh, gosh, yes! Sorry! I never was any good at maths! :D So, that's even worse! You have grounds for a complaint, there.

Yes, it does help when you know what you're asking for. When you're totally ignorant, like I was in the beginning, they can tell you anything, and you wouldn't know. They take advantage of that.

Me2U profile image
Me2U in reply togreygoose

hi greygoose/all this is & has been what my GP's test/treat my hypo condition.Similarly,I tested for high cholesterol & was offered statins.Thankfully,I had read up on these & declined. I have started to buy cholesterol lowering skimmed milk wondering if this may help.

shaws profile image
shawsAdministrator in reply toMe2U

As your thyroid hormones are increased Cholesterol should reduce.

Me2U profile image
Me2U in reply toshaws

hi ty, they never increase my doseage am on 75mg for years my tsh is just in 'level' nothing like 1

shaws profile image
shawsAdministrator in reply toMe2U

The aim is a TSH of 1 or lower but your Free T4 and Free T3 should be tested and should be in the upper part of the ranges.

Unfortunately it seems, on this forum, that doctors know very little about hypothyroidism, neither do they seem to be taught that once diagnosed the aim is a TSH of 1 or lower and FT4 and FT3 in the upper part of the ranges, whilst they seem to believe if it is somewhere in the range that we're on a sufficient dose.

Ask for an increase in dose and tell GP you want a TSH of 1 or lower (no you wont become hyPERthyroid (as some seem to think).

shaws profile image
shawsAdministrator in reply toMe2U

Do you follow this method when having a blood test for your thyroid hormones?

1. Always get the very earliest appointment - even if you have to book weeks ahead.

2. Allow a gap of 24 hours from your last dose of thyroid hormones and the test and take it afterwards.

3. It is a fasting test but you can drink water.

4. Always get a print-out from the surgery and the ranges should also be stated. We are entitled to a print-out but some surgeries might charge for paper/ink.

SlowDragon profile image
SlowDragonAdministrator in reply toMe2U

Start your own post and members can advise on next steps

greygoose profile image
greygoose in reply toMe2U

I would very much doubt it. Why would it help? Cholesterol is made in the liver, and the more you consume, the less it makes. The less you consume, the more it makes. This is just another example of the food industry cashing in on people's fear of cholesterol and taking them for one huge long ride. No form of milk is going to lower your cholesterol while your T3 is too low. But, the problem is not the cholesterol itself, it's the low T3.

Me2U profile image
Me2U in reply togreygoose

thank you!

greygoose profile image
greygoose in reply toMe2U

You're welcome. :)

naturalista profile image
naturalista in reply togreygoose

Well said✅.

-n

in reply togreygoose

What I find surprising is how many doctors want to treat symptoms like high blood pressure and high cholesterol before even trying to optimise your thyroid treatment...they just throw drugs at you, and then it´s up to the patient to do some research about side effects and possible interactions...some of these drugs should even be avoided by hypos...!

greygoose profile image
greygoose in reply to

It doesn't surprise me because they don't know that they are symptoms. Most doctors consider high blood pressure and high cholesterol to be two separate diseases.

in reply togreygoose

Well, I shouldn´t really say "surprised" but rather "discouraging"...!

greygoose profile image
greygoose in reply to

Oh, it's definitely that. :(

humanbean profile image
humanbean

It is worth knowing what the TSH is of healthy people with no known thyroid disease :

healthunlocked.com/thyroidu...

It's a hell of a lot less than 3.4 !

naturalista profile image
naturalista

Oy!

No woman should be placed on statins to reduce chol especially if no HRT dz hx! Your infertility is a direct result of low thyroid function ! 50 mcg Levothyroxine will never correct your thyroid. ITS NOT A THYROID HORMONE!

OMG! What’s wrong with these drs. L-thyroxine (synthetic) is NOT dextro-thyroxine (from a mammals thyroid). It can change a TSH but wil NEVER produce proper thyroid function. If you can’t oppose estrogen/metabolize it/ bind thyroid hormone = birth control:-/

Additionally the BMJ (Lancet) suggests a TSH > 2.25 has good chance of hypothyroidism/ Hashimotos. I kinda trust them you know. Quit the statin now, before the class-action suit begins. Look at the damned side effects!

“ Hypothyroidism is a perfect storm for cardiovascular disease” ( The Thyroid Pandemic). Fix it and live.

-shtdstrbr

helvella profile image
helvellaAdministrator in reply tonaturalista

Just what does this collection of letters mean "no HRT dz hx"? We appreciate proper words rather than abbreviations.

You are absolutely WRONG that mammals produce dextro-thyroxine (though very small amounts might be made).

Can you provide any evidence whatsoever that anyone can identify whether thyroxine molecules in the bloodstream came from a tablet or were produced endogenously?

If you wish to quote the BMJ, please provide a link. It is a vast site.

tattybogle profile image
tattybogle in reply tonaturalista

Hello naturalista, since you are a Canadian Doctor (?) i thought i should let you know that in the UK, " Oy! "is generally considered a rather rude greeting .

Please could you explain shtdstrbr, and HRT dz hx , for the benefit those of us who don't call ourselves Doctors ?

naturalista profile image
naturalista in reply totattybogle

Oops! Lost my response on this tiny phone screen!!

One more time...

A nice summary:

ncbi.nlm.nih.gov/books/NBK2...

HRT dx hx = heart disease history:-)

My bad....D and L isomers of thyroxine exist. Both synthetic.

Apparently The D isomer worked so well to reduce cholesterol/triglycerides that it was pulled from the market!

God forbid we reduce blood fats too much, ( never mind apo-protein a) then we lose $ on all the statin Rx.’s :-/

Thyroxine is thyroxine! Anything else is NOT going to produce the desired result. Take the Natural Desiccated Thyroid. Don’t let anyone tell you it varies in strength from posted because the reverse is true if Synthroid (L). Take it or leave it.

If you feel really well, keep with your program. If not, you better figure it out for yourself and help your healthcare provider, since most are overwhelmed with the # of baby boomers getting ill.

By the by, exercise increases cellular sensitivity to thyroid.

So, take a walk :-)

P.S- I presume you all have computers. Try searching “scholarly articles” on all the thyroid questions you have.

(You can search for Lancet articles with key words...try it.)

-N

tattybogle profile image
tattybogle in reply tonaturalista

k'inell .... is this the way you talk to all your patients? I'm surprised you've got any left.

I don't take kindly to being told to 'take a walk', but i'll happily take your advice at this point , since i don't like your tone . Walking away.

helvella profile image
helvellaAdministrator in reply tonaturalista

D and L isomers of thyroxine exist.

Yes, they do.

Dextro-thyroxine was found to be required in much greater quantities- around 4000 micrograms to broadly equate to 150 micrograms of levo-thyroxine.

Dextro-thyroxine was found to cause heart issues.

It is well-established that by far the majority of the thyroid hormone produced in mammals is of the L- isomers.

Are you able to determine whether a molecule of thyroxine in the bloodstream came from a tablet or was supplied endogenously?

The link you posted as a nice summary says:

A different natural TH derivative, 3,5-diiodo-L-thyronine (T2)

That is, they are being specific that the natural TH derivative is an L-isomer.

We have a guideline, which you agreed to, that says:

13. Members posting on Thyroid UK must only post information which is true and correct to their knowledge. If relevant, please provide references to health or medical information.

Patronisingly posting "P.S- I presume you all have computers." Then unhelpfully suggesting "Try searching “scholarly articles” on all the thyroid questions you have." doesn't conform with the spirit or letter of this guideline.

greygoose profile image
greygoose in reply tonaturalista

Apparently The D isomer worked so well to reduce cholesterol/triglycerides that it was pulled from the market!

As far as I know, no type of levo will reduce cholesterol. High cholesterol is caused by low T3. So, presumably, T3 will resolve the high cholesterol - or should I say, normalise it. Because we don't want it too low.

God forbid we reduce blood fats too much

I presume you do know that cholesterol and fat are two different substances?

naturalista profile image
naturalista in reply togreygoose

I presume you know that cholesterol is a FAT+PROTEIN combination, and would not exist sans the fat?

helvella profile image
helvellaAdministrator in reply tonaturalista

Cholesterol is a sterol - not a fat + protein.

Chemical formula

C27H46O

No nitrogen in there at all. (All proteins are created from amino acids which all contain nitrogen).

Cholesterol is usually regarded as a lipid but not a fat.

greygoose profile image
greygoose in reply tohelvella

I couldn't have put it better myself. :)

in reply tonaturalista

So, using your logic, the insulin that a person with diabetes 1 must inject daily is not insulin because it does not come from the pancreas itself but from a syringe...??? Idem for hydrocortisone in Addison´s disease, HRT for women who´ve had a hysterectomy etc...?

I don´t find your reasoning very helpful TBH. You can say that NDT helps many who remain symptomatic on levo, although the OP is still on a starting dose after 14 years so may or may not feel better if levo was raised to bring her TSH down and her FTs up...but you should´t say that NDT is the only solution as it does not work that way for everyone.

And I don´t understand your comments about thyroxine not being a thyroid hormone...if it wasn´t, people who take levo only after a total thyroidectomy would die.

If you mean that not everyone can be optimally treated with levo only, that is what you should say.

And....if you don´t consider thyroxine a thyroid hormone, does that mean you consider synthetic T3 not to be a thyroid hormone either...???

SlowDragon profile image
SlowDragonAdministrator

Print these out for your GP and request 25mcg dose Increase in levothyroxine

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

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

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.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Statins

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.

SlowDragon profile image
SlowDragonAdministrator

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3 or NDT make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

naturalista profile image
naturalista in reply toSlowDragon

Nice! Very helpful✅.

-N

Red14 profile image
Red14

Hi

Can I ask what is the optimum for FT4 as I have gone through my medical records found a test for FT4 from March 2019 (it was within range!!!) at 16.7 pmol/L top of the range was 22? Thanks Red14

SlowDragon profile image
SlowDragonAdministrator in reply toRed14

Just testing TSH and Ft4 is completely inadequate

Come back with new post once you get FULL Thyroid and vitamin testing

Essential to test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test....is this how you did test?

Ft4 only 47% through range...likely too low

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Red14 profile image
Red14 in reply toSlowDragon

Thank you for reply, will go back to drs & ask for more intense testing!

I would suspect I had taken my tablet before test in March 2019 as I didn’t know not too but now I do!

SlowDragon profile image
SlowDragonAdministrator in reply toRed14

If in the U.K. getting private testing likely necessary

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

naturalista profile image
naturalista in reply toRed14

Do you find it odd that these so called “ranges” vary quite a bit globally/regionally/municipally?!!

I wonder why the medical community is so fractured on this.

Presumably a woman in w

West Africa needs exactly what a Woman in Chicago needs?!

Bear in mind “Free t4” represents ~2% of thyroxine produced, the remainder is bound to thyroglobulin. None of it is “active”.

You have to convert the t4 to t3, and this is heavily dependent on selenium. There isn’t any in the soil on this side of the Atlantic:-/ so your best bet is to supplement 200 mcg/day. By the way, a published study showed selenium virtually cured all the participants with Hashimotos. (Look it up).

Just sayin’.

-n

SlowDragon profile image
SlowDragonAdministrator in reply tonaturalista

Since thousands of members on here already supplement selenium...yet very clearly still have Hashimoto’s that statement is obviously a vast overstatement

Selenium may help improve conversion of Ft4 to Ft3...it’s not going to “cure” a non functioning thyroid

helvella profile image
helvellaAdministrator in reply toSlowDragon

If selenium alone were a cure for Hashimoto's you'd expect the high levels in much of the USA (in particular) to see a distinctly lower rate of the disorder.

Insufficient selenium is one of the many issues which contribute to thyroid disorders. But far from the only one.

helvella profile image
helvellaAdministrator in reply tonaturalista

Assuming you mean Europe?

Some parts of Europe have quite high selenium levels. There are considerable areas of the UK which have fairly high levels.

Selenium is a rather low-abundance nonmetallic element, present at only 0.1 mg/kg in the Earth’s upper continental crust. It is strongly associated with sulphur and has an affinity with organic matter, so it is relatively enriched in shales (0.3 mg/kg) and especially coals (3 mg/kg). It is an essential micronutrient for many organisms, but it has a narrow optimum intake range and both deficiency and excess toxicity problems are well documented.

The highest Se concentrations in soils of England and Wales are strongly spatially correlated with sulphur. They occur over much of the higher altitude land in the south-west, Wales, Cumbria and the Pennines, and may therefore also have an atmosphere deposition component (RoTAP, 2011). In addition to this pattern, relatively large Se concentrations occur in the Fens, the Norfolk Broads, and Teesside, associated with organic matter. Molybdenum and sulphur concentrations in soils, along with Se, are also relatively elevated in the area in Somerset most affected by ‘teart’ in ruminants (see Molybdenum). The origin of high Mo, S and Se concentrations in this area may be the underlying black shales of the Lower Liassic (Jurassic).

Most soils in the lowland agricultural areas are low in Se, especially over sandy soils derived from the Old Red Sandstone and Permo-Triassic and Quaternary deposits. It is known that this results in low concentrations in staple crops such as wheat that can lead to element deficiencies in animals and humans (Adams et al., 2002). In addition, it can be seen that the majority of soils in these lowland areas have concentrations below 0.6 mg Se/kg which has been suggested can lead to dietary deficiencies (Lyons et al., 2003).

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