SEEKING SOME WISDOM: HI all . i am 69 yr old... - Thyroid UK

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SEEKING SOME WISDOM

suradeva profile image
12 Replies

HI all .

i am 69 yr old male and have had me/cfs /fibro fairly severely for 50 yrs plus multitude other probs ,just had thyroid tests via gp

tsh 5.92 (.27--4.2 )- was 4.02 in december 2019

T3. 5.0 (3.1-6.8)

T4 17.9 (12-22)

in last 9 months even though ultra thin all life have put on 2ins fat on waist ,7lb in weight ,and my already high levels of fatigue ,lethargy have increased , and although many of my symptoms such as low bl .pressure ,low libido (etc can be explained by other causes , i do suspect like many me/cfs cases i am sub clinical hypo

my vit d3 and b12 are always high normal or beyond as i take sublingual supps

my ferritin is ok ,but i have anaemia of chronic disease as gp calls it -no treatment as stable .

can any of the wise heads here advise whether a private test of antibodies etc would be useful /required or shall i just try and convince my usually accommodating gp that a trial of levo at low dose might be in order to see if i improve on it ?

thanks for any advice and the support you give to so many

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suradeva
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12 Replies
fuchsia-pink profile image
fuchsia-pink

Welcome to the forum.

If your GP is accommodating, I would try and get that trial of levo. Your TSH is out of range and free T4 and free T3 could be higher - currently 59% and 51.3% through range, so not a disgrace but scope to go up without going over-range.

GP may well test antibodies too. Good luck :)

suradeva profile image
suradeva in reply to fuchsia-pink

thanks for that confirms my thinking ( as far as i can at the moment !) gp did say in past that he doesnt have authority to request antibody tests only endo can do that ? i saw an NHS endo 2 yrs ago and as often happens he didnt really take my hypo common with me/cfs thesis seriously but did say to gp i could try if he agreed so seems i am better off than many here who have probs with medics

thanks again

StitchFairy profile image
StitchFairy in reply to suradeva

I think you'll find that your GP does have authority to do antibody tests. That may have been the case when your TSH was in range, as there theoretically wasn't a reason to test antibodies. But with an over range TSH suggesting hypothyroidism, it's quite usual to check antibodies to see if that's the cause of the hypothyroidism. I would definitely request antibody testing again from your GP when asking for a trial of low dose levo. It doesn't make sense to pass such a trivial thing as antobody testing over to an endo. That would be a certain waste of NHS funds.

Redlester profile image
Redlester in reply to suradeva

if GP refuses to test antibodies you can get them tested privately via a test from Medichecks - all you need is a fingerprick test kit - no blood draw needed - and you can also do a full thyroid work up at the same time - were the tests your GP did early as possible in the morning and fasting [ideally before about 8.30am]?

shaws profile image
shawsAdministrator in reply to suradeva

Your TSH is high. I must also state that I'm not medically qualified but had to diagnose myself.....eventually. In the UK the regulations seem to be that we aren't diagnosed until TSH reaches 10 whilst ignoring clinical symptoms.

This is the procedure for blood tests (just in case you aren't aware) is blood draw should be at the very earliest, even if you have to make it weeks ahead. It is also a fasting test - (you can drink water) and wait an hour before eating.

TSH drops throughout the day and that seems to be all the doctors notice.

It is from the pituitary gland - not the thyroid gland.

SlowDragon profile image
SlowDragonAdministrator

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

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 .

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

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

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Costs about £150 for private ultrasound if gp won’t do

suradeva profile image
suradeva in reply to SlowDragon

thks for all that -yes i always ask for a 9 am fasting blood test ,

back in 2014 my thyroidperoxidase was <5

and my b12 vitd3 folate are always fine either near or above the upper limit , my cortisol last week was424( 133-537 ) in dec 2019 it was 296.

ferritin - 132 (30 -400)

i am not coeliac but follow a gluten free diet for most part

thanks for advice

SlowDragon profile image
SlowDragonAdministrator in reply to suradeva

On strictly gluten free diet TPO antibodies are frequently low

Have you ever had TG thyroid antibodies tested?

Many Hashimoto’s patients only have high TG antibodies...or 20% never have raised antibodies

Ultrasound scan of thyroid can be very helpful

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

suradeva profile image
suradeva in reply to SlowDragon

HAD WORD WITH GP yday AND now HAVE THE LEVO TO TRY FOR MONTH THEN RE TEST ,

i forgot to mention i have been taking 50 mg pregnenolone as part of my me/cfs regime - is it ok to continue or best to leave off whilst i try the levo at 25 mg or should i get advice ?

i only take one other drug phenergan ,anti histamine for sleep but do take fair number of supps and herbs mg, vit b3 ,vit c prostate herbal ,valerian ,ayurvedic herbs .. thks for any info

SlowDragon profile image
SlowDragonAdministrator in reply to suradeva

Because of your age starting dose of 25mcg levothyroxine

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

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...

Make sure to take levothyroxine well away from all other medication and vitamins

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, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

SlowDragon profile image
SlowDragonAdministrator in reply to suradeva

but do take fair number of supps and herbs mg, vit b3 ,vit c prostate herbal ,valerian ,ayurvedic herbs .. thks for any info

Exactly what vitamin supplements?

suradeva profile image
suradeva in reply to SlowDragon

magnesium /,vit B3/ D RIBOSE / vitamin d3 and K2 sublingual spray , co q 10 spray /vit B12 spray /turmeric spray /pregnenolone 50 mg/ vit c powder

ayurvedic brahmi/triphala /ashwaghanda as herbal decoctions

valerian tincture

prostate herbal tabs with lycopene /stinging nettle /saw palmetto

i always start any drug at very low dose as i get side effects very easily , i feel bad enough a sit is and want to ease into this , only items that might affect i think might be the pregnenolone and ashwaghanda

thanks for help appreciated as brain fog and low energy make it difficult

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