Help with TSH results: Hi everyone, I'm new to... - Thyroid UK

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Help with TSH results

sigmoid profile image
23 Replies

Hi everyone,

I'm new to the forum, female 68yrs old. Diagnosed Hypo 2006 have been on Levo 75mcg for the last 10 yrs. Recently I have been feeling very tired, constipation, hair loss, dry brittle nails, gut problems and high cholesterol. My GP refused to increase my dosage.

TSH level 3.26 range 0.55 - 4.78mu/L

FT4 level 13.1 range 12 - 22

FT3 level 3.3 range 3.1 - 6.8

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sigmoid profile image
sigmoid
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23 Replies
SlowDragon profile image
SlowDragonAdministrator

Was test done early morning, around 9am and last dose levothyroxine 24 hours before test

Results so you are under medicated

See a different GP or go over their heads and see recommended thyroid specialist endocrinologist

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors

tukadmin@thyroiduk.org

Print out selection of NHS and NICE guidelines and push hard for dose increase to 100mcg daily

Having been left under medicated a long time ….initially increase slowly….75mcg and 100mcg alternate days for first 6-8 weeks before increasing to 100mcg daily

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Guidelines

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually on, or near 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.

Also here 

cks.nice.org.uk/topics/hypo...

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.

Essential to also test vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you taking

Do you have autoimmune Thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies

sigmoid profile image
sigmoid in reply toSlowDragon

Thank you for your email

Tests were done around 10.30am last dose 24hrs before test.

My Levothyroxine brands are Accord 50 mcg and Mercury Pharma 25mcg should I stay with the same brand?

Tested in March 23 for:-

B12 487ng/L range 211 - 911 ng/L

Ferritin 66 ug/L range 10.00 - 291ug/L

Calcium 2.21 range 220 - 260 mmol/L

Folate 11.8 range 5.40ug/L

Taking Perfectil for skin, hair and nails. My diet is quite healthy, this is why I don't understand why my cholesterol is so high 7.3 I believe this can be contributed to being Hypo, so I've read.

I don't think I've ever been tested for antibodies.

"Thank you" I really appreciate your response

SlowDragon profile image
SlowDragonAdministrator in reply tosigmoid

So TSH would have been even higher at 9am

Approximately how much do you weigh in kilo

High cholesterol is directly linked to being on too low a dose levothyroxine

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.

Perfectil contains biotin. Important to remember to stop taking this a week before any blood test as biotin can falsely affect blood tests (biotin is used in lots of lab test equipment)

Suggest you test vitamin D

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

sigmoid profile image
sigmoid in reply toSlowDragon

Hi SlowDragon,

I think I'm around 56 kilo......8 stone 11ozs....I'm still imperial

I tried to tell the GP that high cholesterol could be related to my under active thyroid, wasn't having any of it!

I'll get my vit D test done.

Thank you.

Marz profile image
Marz in reply tosigmoid

Did you manage to read the link above posted by SlowDragon

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

It will reassure you that raised cholesterol is linked to your thyroid and not your diet 🌻.... as mentioned by others here....

sigmoid profile image
sigmoid in reply toMarz

Hi Marz,

Thank you for your email.

Haven't managed to read the link yet.....I'm so overwhelmed with all the responses and information. I just can't believe there's so much information and help out there.

Thank you😌

SlowDragon profile image
SlowDragonAdministrator in reply tosigmoid

So guidelines on dose by weight suggests around 90mcg per day

Some people need more than guidelines and your high TSH suggests that might be case with you

Malabsorption issue can mean need higher dose than guidelines

90mcg per day x 7 days = 630mcg per week

currently you’re taking 525mcg per week - 75mcg per day

greenfingers profile image
greenfingers in reply tosigmoid

As we get older we need Cholesterol so don’t worry about it. Everyone should read Dr. Aseem Malhotra’s book A Statin Free Life it’s very interesting.

pennyannie profile image
pennyannie

Hello Sigmoid and welcome to the forum :

Your cholesterol is high because your T3 is much too low and your body not metabolising which includes not being able to extract key, core strength nutrients through your food irrespective of what you eat.

As we age, our bodies do slow down but seeing as you are already hypothyroid and taking thyroid hormone replacement you dose could be increased to support your body better.

Your T4 is at just around 10% in the range with your T3 tracking behind at just around 5% through its range - you are barely in the ranges - and once on T4 - Levothyroxine we need to see a TSH at least under 2 - possibly much lower and even just scraping into the bottom of the range.

Once on any form of thyroid hormones replacement it is essential to be dosed and monitored on your Free T3 and Free T4 readings though fully understand in primary care the yearly thyroid function test is generally just a TSH and really a total waste of everybody's time.

We generally feel at our best when our T4 is in the top quadrant of it's range as this should then convert to be decent level of T3 at around 60-70% through it's range and it is low T3 that causes all the symptoms of hypothyroidism.

I don't know if GP's have some further ( stupid ) guideline that instructs them to reduce T4 medication for elderly patients - but I know when I reached 65 I was not allowed to stay on the dose of T4 that suited me, and automatically reduced down by 25mcg and therein 2 years later I was extremely unwell but told I was fine as my TSH wasn't suppressed and there were no explanations forthcoming as to 2 years going around various o/patient departments and getting no answers as to my ill health and disabling symptoms.

No thyroid hormone works well until the core strength vitamins and minerals are up and maintained at optimal and everywhere I researched some 6 years ago when I had to take matters into my own hands suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work well.

I now self medicate and am much improved and aim to maintain my ferritin of around 100 : folate 20 : active B12 75 ++ ( serum B12 500 ++ and vitamin D at around 100:

sigmoid profile image
sigmoid in reply topennyannie

Hi tattybogle,

Thank you for your response and information.

I'm finding it extremely difficult even to get a GP appointment.... let alone increasing my dosage. My cholesterol has been going up and up over the last five years, even though my diet is quite healthy and I exercise daily.

I don't want to go on statins and once my TSH levels are right I'm hoping my cholesterol will come down.

Thank you for sharing your story......really appreciate it.

sigmoid profile image
sigmoid in reply tosigmoid

HI Pennyannie.....I think I addressed you with the wrong name.....sorry

Thank you for all the good advice....I only wished I'd been on the forum years ago!!

pennyannie profile image
pennyannie in reply tosigmoid

No worries - and yes I totally agree -

I too wish I hadn't trusted my doctor thinking that she knew best - it's scary isn't it ?

sigmoid profile image
sigmoid in reply topennyannie

Yes....we tend to look up to certain professions...I don't think I will be anymore.

pennyannie profile image
pennyannie in reply tosigmoid

Well only if ' they happen ' to be taller - and I'm almost 6 ' so having been respectful and too trusting I now look after myself and run my own blood tests and stay away as I'm lucky and have no other heath issues now.

Disillusioned and disappointed come to mind.

tattybogle profile image
tattybogle

Hi sigmoid ... put this list under GP's nose .Recommendations for GP's to keep TSH between 0.4 / 0.5 and 2 /2.5 in patients on Levo ....ask them to to give you a reason why they think your TSH is ok at over 3 in the ligh of these recommendations.

healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower

Ask for a trial dose increase for few months to see what effect it has on symptoms / Cholesterol and TSH level.

GP cannot know if your TSH will go below 0.4 with a dose increase , the only way is to try it .. if they are still unwilling to offer a trial of an increased dose .. ask for a clear reason why not ... they will struggle to give one that holds water.

sigmoid profile image
sigmoid in reply totattybogle

Hi tattybogle, thank you for your response and list of references......I've never had so much information.

I would like to get my TSH down to at least 2

I'm going to battle back to the GP and ask for a trial of increased dose.

tattybogle profile image
tattybogle in reply tosigmoid

you're welcome :)

Great isn't it ,so much information all in one place after 20 yrs of 'zilch'.

I wish i'd found my way here years ago too.. it took me till 2020 to find my way here and i could have done with it in 2003 . Better late than never.

greygoose profile image
greygoose

Tell your doctor that cholesterol is made in the liver - and it's made in the liver because your body needs it! - and has next to nothing to do with your diet or exercise or anything else of that kind. Your cholesterol is high because of your low FT3. When FT3 is low, the body cannot process and excrete cholesterol correctly, and it tends to build up in the blood. But that doesn't mean that the liver is making and access, nor that you are eating too much cholesterol containing foods. The more you ingest from your food, the less the liver makes. The less you ingest, the more it makes. The liver keeps the amount it makes balanced. Personally, I wish eating cream butter and eggs did cause cholesterol to rise! Because mine tends to be dangerously low naturally, and nothing can make it rise.

You can also tell your doctor that high levels of cholesterol are not dangerous - far worse to have low levels! It does not cause heart attacks or strokes. It's inflammation damaging the arteries that causes that, and the more hypo you are, the more inflammation you have. So, if he wants to save you from a heart attack, maybe he should do something about your very low FT3! :)

sigmoid profile image
sigmoid in reply togreygoose

Hi Greygoose,

Thank you for your email.

I'm so pleased with all the info I've been forwarded and learnt so much regarding my cholesterol and TSH .....which confirms my theories on both issues.

Thank you😌

greygoose profile image
greygoose in reply tosigmoid

You're welcome. :)

greygoose profile image
greygoose in reply togreygoose

But, in fairness to your doctor, he is only going by the information he gets from Big Pharma sales persons, and they want to sell statins. Big Pharma doesn't want doctors to know about the thyroid-cholesterol connection.

That said, he should know better than just to take their 'information' at face value, and do a little reading for him/herself!

SlowDragon profile image
SlowDragonAdministrator

Just a thought

Presumably you are aware to always take levothyroxine on 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

Brightness14 profile image
Brightness14

With so much great information on this site you can become well again, good luck.

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