So fed up: Had Thyroid 10 years now, plus... - Thyroid UK

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So fed up

topgirl26 profile image
19 Replies

Had Thyroid 10 years now, plus depression recently I have been feeling fatigue cold tired exhausted, soft nails, I know I am not depressed, I know my body, had test done in March came back normal, full blood count, iron, ferritin etc the lot came back normal, but was told folic acid was low, started taking them and vitamin Ď cod liver oil must say feel better not so tired, but I get very emotional and sad horrible feelings which is absolutely awful but it does lift, so confused fed up with feeling I'll x thank you

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SlowDragon profile image
SlowDragonAdministrator

You didn’t reply on your previous post to my questions

healthunlocked.com/thyroidu...

Your results suggest likely need dose increase in Levothyroxine

Most people when adequately treated on just Levothyroxine will need Ft4 (levothyroxine) at least 70% through range

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

What vitamin supplements are you taking

Strongly recommend getting FULL thyroid and vitamin testing done

ALWAYS test early morning, ideally before 9am only drinking water between waking and test and last dose Levothyroxine 24 hours before test

Do you always get same brand Levothyroxine

75mcg is low dose unless very petite

topgirl26 profile image
topgirl26 in reply toSlowDragon

Thank you I had full tests, full vitamin test thyroid, all vitamins came back normal same as thyroid had T3 done last September came back normal, I have mentioned to my doctor re what I have found out she looked at me as much to say who's the doctor she will not have it that's it's my thyroid, I am taking feroglobin tonic, high strength vitamin D, folic acid 400, cod liver oil with fish oils.Sine I have been taken that I do feel better.

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

Please add most recent thyroid and vitamin results and ranges

Looking for Ft4 and Ft3 to be at least 70% through range

Was thyroid test done early morning and last dose Levo 24 hours before test

How much do you weigh in kilo

topgirl26 profile image
topgirl26

On leverroxine 75mg for few years only taken that make

topgirl26 profile image
topgirl26 in reply totopgirl26

hi yes test done in the morning did not take my thyroxine as said, vitamin 7.3.24 serum folate 2.7 normal range 3.0 to 20.0. Vit B12 382 ngl, normal range 197 to 771 mine 382, Serum total 25-OH vit D level 57 nmol/L normal range no range done 6 3 24 Thyroid 7 3 24 serum free T4 17pmol/L, normal range 11.0 to 21.2 my result 17.5, Serum TSH 1.72 mIU/L normal range 0.27 to 4.20 mine 1.72 T3 done 28.9.24 level 4.500pmol 3,100 - 6,800 my weight is 73 kilo thank you

tattybogle profile image
tattybogle in reply totopgirl26

I have tidied those results up to make them more readable for  SlowDragon ( cos i'm bored lol)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

hi yes test done in the morning did not take my thyroxine as said,

vitamin 7/3/24

serum folate 2.7 [3.0 to 20.0]

Vit B12 382 ngl [197 to 771]

Serum total 25-OH vit D level 57 nmol/L normal range no range . done 6/ 3 /24

Thyroid 7/ 3 /24

serum free T4 17.5 [11.0 to 21.2]

Serum TSH 1.72 [0.27 to 4.20]

T3 (done 28/9/24 ) 4.5 [3.1 - 6.8] i presume that date is a typo ? as it's in the future.

my weight is 73 kilo

thank you

topgirl26 profile image
topgirl26 in reply totattybogle

Thank you so much yes should be 23 x

topgirl26 profile image
topgirl26 in reply totattybogle

thank you for doing that for me to be honest its all too much for me to understand, thank you for sorting it out.

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

so all far from ok

serum folate 2.7 [3.0 to 20.0]

Vit B12 382 ngl [197 to 771]

Folate deficient and B12 far far too low

You need a separate B12 and …….a week later add a separate vitamin B complex (rather than folic acid)

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

topgirl26 profile image
topgirl26 in reply toSlowDragon

thank you for all the information, the levo i take is in the purple packet, i have woke up this morning and feel very tearful again and cant be bothered, i have downloaded the private doc. not sure what to do or choose i live in london se9, i really cannot stand these feeling for much longer, i feel confused just want to stay in doors and potter in my garden, do not feel depressed as i want to do things and do push my self, i am at my wits end really, thank you how can i get through to my docs, so exausted x

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

Serum total 25-OH vit D level 57 nmol/L

This is far too low

Taking high strength vitamin D

Exactly what brand and how much vitamin D are you taking

Aim to improve to at least 100nmol

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 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 when supplementing

Can test via NHS private testing service

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.

One spray = 1000iu

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

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

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

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...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

topgirl26 profile image
topgirl26 in reply toSlowDragon

Hi I did not realise how important vitimins are for thyroid this site is the only place i get any info, docotrs dont tell you anything, I have been taking Vit D chewable high strenth 25pu one a day, got this from superdrug revitalise healthcare + thats ther name, of them, cod liver oil and fish oil 1000mg got these in superdrug as well, I will get the ones you have suggested. Thank you once again for all your help it is most appfreciated..

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

I have been taking Vit D chewable high strenth 25pu one a day, got this from superdrug revitalise healthcare + thats ther name,

That’s only 1000iu ….

Most thyroid patients need at least 2000iu daily vitamin D minimum

Many need 3000-5000iu daily

Test twice yearly

May need more in winter than summer

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

Free T4 (fT4) 17 pmol/L (11 - 21.2) 

Ft4 only 58.8% through range

So plenty of room for dose increase in levothyroxine

Request 25mcg dose increase in Levo

But initially you probably should only increase by 12.5mcg

So taking 75mcg and 100mcg on alternate days

Which brand is your 75mcg

If it’s a single tablet it will be Teva

Teva doesn’t suit many, many people

Guidelines suggest eventual daily dose levothyroxine according to your weight would be around 116mcg daily

73 kilo x 1.6mcg per kilo of your weight per day

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.

Some people need a bit less than guidelines, some a bit more

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...

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

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

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

Obviously this is old test

But Ft3 was far too low

T3 (done 28/9/23)

Free T3 (fT3) 4.5 pmol/L (3.1 - 6.8)

Ft3 was only 37.8% through range

Most people when adequately treated will need Ft3 at least 60-70% through range…….and frequently Ft4 (levothyroxine) will need to be at least 70-80% through range

For good conversion of Ft4 to Ft3 we must have OPTIMAL vitamin levels

Suggest you

A) work on improving low vitamin D, folate and B12

B) increase levothyroxine

C) work out which brand levothyroxine suits you best

Retest TSH, Ft4 and Ft3 privately in 6-8 weeks time

SlowDragon profile image
SlowDragonAdministrator

suggest you reread your previous post 9 months ago

healthunlocked.com/thyroidu...

If your GP won’t increase your dose you will need to see thyroid specialist endocrinologist

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Also ……have you ever had thyroid antibodies tested to see if your hypothyroidism is autoimmune

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

FancyPants54 profile image
FancyPants54 in reply toSlowDragon

Such a detailed and helpful post. I hate the "normal" that's dished out instead of proper results analysis by most.

topgirl26 profile image
topgirl26 in reply toSlowDragon

Hi can you tell me or do you know why can you have dips in energy with thyroid, as I seem to have a couple or so good days quite a lot of energy and like today feel terrible no energy finding it hard to do anything, this is what is upsetting me, can this happen? thank you

SlowDragon profile image
SlowDragonAdministrator in reply totopgirl26

Common when on inadequate dose levels

Levo is a storage hormone

A few quiet days …..you gain a bit of surplus

Then a day or two being busy …….you run out

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