Previous post deleted by me!! 🤔: Hi fuschia-pink... - Thyroid UK

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Previous post deleted by me!! 🤔

Wendyrmn66 profile image
23 Replies

Hi fuschia-pink (and everyone else in my first thread).

I deleted my previous post! Don't ask me how 🤔

Dec 2020

TSH 12.8

T4 12.O

Jan 2021

TSH 10.70

T4 10.2 (10-22)

So my T4 has actually declined!

Confused 😕

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Wendyrmn66 profile image
Wendyrmn66
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SeasideSusie profile image
SeasideSusieRemembering

Wendyrmn66

I may have responded to your other thread but if I did I have no idea what your question was or what you wanted to know or what information you gave about your current medication. Perhaps you can repeat what it was that was in your first post.

So my T4 has actually declined!

Did you mean to put TSH has declined, as there's no T4 result for January.

I'm pretty sure you would have been asked for the reference ranges for your results, particularly the FT4 as these vary so much from lab to lab.

Wendyrmn66 profile image
Wendyrmn66 in reply to SeasideSusie

Thanks seasidesusie

Sorry been on nights... i missed it off.My T4 has declined from 12 to 10.2

God knows what it is now.

Ive ordered a kit from Monitor My Health this morning so fingers crossed.

(Ive updated post)

SlowDragon profile image
SlowDragonAdministrator

With TSH over 10 you should be prescribed levothyroxine.

See flow charts on here

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

Are you currently taking levothyroxine?

If so how much levothyroxine are you currently taking

Standard starter dose of levothyroxine is 50mcg

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

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Have you had thyroid antibodies tested and vitamin levels

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 at least annually

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

About 90% of primary hypothyroidism is autoimmune thyroid disease

Ask GP to test vitamin levels and thyroid antibodies if not been tested yet

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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

Wendyrmn66 profile image
Wendyrmn66 in reply to SlowDragon

Hi slowdragonI was chatting last night on here under 'Think im on my way out' but somehow deleted my thread!

Im on levo since Dec 50mcg then from Jan 100mcg. Dont feel any better.

GP don't do T3 so ive ordered kit today from MMH.

Fingers crossed and thanks a lot

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Which brand of levothyroxine are you currently taking

Make sure you do test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking ....if any

Have you had thyroid antibodies tested

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Essential to test vitamin D, folate, ferritin and B12 ....get GP to test these and thyroid antibodies, if not been tested yet

Wendyrmn66 profile image
Wendyrmn66 in reply to SlowDragon

Hi there coukd yoi please advise? This is from Monitor My Health

Based on 100mcg levo

Thank you so much in advance.

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Ft4 is 48% through range Ft3 44% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

So you have good conversion of Ft4 to ft3, but not on high enough dose levothyroxine

Most people on levothyroxine will need Ft3 and Ft4 at least 60% through range

Assuming test was done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

See GP for 25mcg dose increase in levothyroxine

Do you always get same brand of levothyroxine

Which brand

Essential to test vitamin D, folate, ferritin and B12 at least annually

What vitamin supplements are you currently taking

When were vitamins last tested

Wendyrmn66 profile image
Wendyrmn66

Yes Scrumbler ive been diagnosed hypo. I put a tgread on here last night and had all details on there but i deleted whilst trying to delete a message i sent to myself!! 🙄

fuchsia-pink profile image
fuchsia-pink

Hi Wendy

Happily you "liked" my replies before, so I can see the first few words of what I said before, from my alerts ....

I said two things: one was that I'd had some success getting my results by putting in a written request at the time of having the bloods taken (but WHY you have to as each and every time is something of a bore ...)

and that "normal" or "in range" isn't an acceptable response: you need actual results and lab ranges, so that you can see where in the range you are (and just how little has been tested).

Most of us need TSH to be low - less than 2 and probably less than 1 and free T4 (and free t3) to be in the top quartile or higher of their ranges ... whereas if yours are the other way around (high TSH and low frees) they may be in range but they're a LONG way from where you need them x

Wendyrmn66 profile image
Wendyrmn66

Im at GP tomorrow so ive screenshot these to compare with my results. No wonder ive felt so crappie. Always been fit and active despite back problems and other things. Ive not known anything like this its debilitating!

Love to all on here for responses. Its been really helpful! Thank you.

I'll post my results tomorrow night xx

SlowDragon profile image
SlowDragonAdministrator

Request GP test vitamin levels

How much do you weigh in kilo approx

guidelines on dose levothyroxine by weight can help push for dose increase in levothyroxine

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...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Wendyrmn66 profile image
Wendyrmn66 in reply to SlowDragon

My weight is 92kg I worked out I need 150mcg

I just mentioned this to,GP and his increased by 25mcg 👍

I had low vit D last Dec commenced 3000iu daily.

Ferritin etc all normal.

I've had everything i can tested.

Been referred to rheumatology and gastro. GP thinks i have fibromyalgia.

I hope all my symptoms are due to thyroid .

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Fibromyalgia is frequently inadequately treated hypothyroidism....it’s not an actual diseases....just a dustbin diagnosis when they don’t understand treatment for hypothyroidism

Few links about fibromyalgia

healthrising.org/blog/2019/...

thyroiduk.org/tuk/research/...



stopthethyroidmadness.com/f...

prohealth.com/library/new-t...

chriskresser.com/low-t3-syn...

holtorfmed.com/download/chr...

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Which brand of levothyroxine are you currently taking

Make sure extra 25mcg is same brand

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Please add actual results and ranges for vitamin D, folate, ferritin and B12

We need optimal vitamin levels.

How low was vitamin D

Vitamin D will need testing twice year when supplementing

Are you also supplementing magnesium and vitamin K2

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

Wendyrmn66 profile image
Wendyrmn66 in reply to SlowDragon

Brand is MercuryPharma

I didnt know vit D levels and our GP don't prescribe vitamins anymore!!

I am taking VitD 3000iu + VitK 75ùg spray daily. The doc i work with recommended the spray.

I dont take magnesium as i have low BP. I used to take it but i stopped as it dropped further 90/40 probably due to thyroid!!

I don't believe in fibromyalgia either and my GP knows this. I think its a diagnosis given to symptoms nobody can pinpoint! Bit like the yuppie flu ME 🤐(Apologies to anyone with ME).

Wendyrmn66 profile image
Wendyrmn66 in reply to SlowDragon

GP said Vit D levels are low but gave no indication... i had low levels 3 years ago and was prescribed loading dose then reduced and then none. Its Better You spray ive got!! Thank you 😊 at least i got 1 thing right.

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Strongly recommend getting vitamin D tested twice year

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Wendyrmn66 profile image
Wendyrmn66

My weight is 92kg :( I worked out I need 150mcg

I just mentioned this to,GP and his increased by 25mcg 👍

I had low vit D last Dec commenced 3000iu daily.

Ferritin etc all normal.

I've had everything i can tested.

Been referred to rheumatology and gastro. GP thinks i have fibromyalgia.

I hope all my symptoms are due to thyroid .

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Vitamin D supplement may not be high enough dose at 3000iu ....or you might find it’s too much

You are legally entitled to copies of your blood test results....including vitamin D

Everyone is individual on what dose vitamin D they need. You may need more in winter than summer

Obviously essential to test folate, ferritin and B12 at least annually too

When you say ferritin is “normal “ please add actual results and ranges

SlowDragon profile image
SlowDragonAdministrator

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Optimal vitamin levels are

Ferritin at least half way through range

Folate at least half way through range

Serum B12 at least over 500

Vitamin D at least around 80nmol and around 100nmol maybe better

Wendyrmn66 profile image
Wendyrmn66

Just had recent bloods Would someone kindly interpret please?

TSH- 0.81

T4- 18.6

T3- 4.1

So my T3 has actually gone down and is now only 27% through range.

Still have aches and pains but not as bad as before.

Hair is awful 😢

Weight loss NIL

Should i ask for 25mcg increase as this would be in line with my weight.

Thanks so much in advance :)

SlowDragon profile image
SlowDragonAdministrator in reply to Wendyrmn66

Write this as new post ….otherwise only very few people will read it

Wendyrmn66 profile image
Wendyrmn66 in reply to SlowDragon

Ok thank you 😊

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