Exhausted and frustrated : Hi guys, I’ve wrote... - Thyroid UK

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Exhausted and frustrated

Taytay68 profile image
Taytay68

Hi guys, I’ve wrote here a couple of times and your advice has always been appreciated and acted on, I’m on levothyroxine 50mg a day.. and multiple supplements as per advised my you guys, magnesium, vit d, b12,b complex, vit c as well as others. I was diagnosed with underactive thyroid 6 months ago but I feel no better, constant fatigue and body pain plus still have oral thrush after months and months and even my specialist has no idea .. so I spoke with my GP 2 weeks ago and he offered me citalapam !!! I declined- strongly. So after getting upset with him he finally agreed to more blood tests, which is were I get confused my thyroid tests have come back fine but there are a couple of observations on my full blood count, is anyone able to look for me and explain, I’m so frustrated, I’ve had to go part time at work because I can’t physically stand any longer then 4 hours I’m and trying to live my best life but I’m just so exhausted and getting fatter by the minute

Thank you in advance, uploading results

13 Replies
SlowDragon profile image
SlowDragonAdministrator

50mcg levothyroxine is only a starter dose

Obviously GP is only looking at low TSH

Can you get 25mcg dose increase in levothyroxine “as trial”

Do you always get same brand levothyroxine at each prescription

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

Exactly what vitamin supplements are you currently taking

Did you stop any supplements like B complex, that contains biotin a week before blood test?

Have you had vitamin D tested?

Taytay68 profile image
Taytay68 in reply to SlowDragon

Thank for getting back to me, yes i stopped everything over a week before the test and no levo 24 hours prior, and the test was early morning, im taking..

1000iu vit D

Vit C 500mg,

b12 100ug,

selenium 50ug,

b complex,

i-tyrosine 500mg,

im also taking activated charcoal for bloating as my stomach swells so bad, i can be one size of clothing then in an hour i can be a size up... ive gone gluten and dairy free as well. i havent spoken with the GP yet regarding results, i wanted to be for armed first, they want to put everything down to depression, im not even depressed, yes i get fed up with myself, also they did my vit D last time and said the results were fine, but for some reason i cant find the number.

SlowDragon profile image
SlowDragonAdministrator in reply to Taytay68

Which brand of levothyroxine are you currently taking? Always same brand?

As you are now dairy free you really need lactose free levothyroxine

You could push for trial on liquid levothyroxine (it’s expensive so they hate prescribing)

New guidelines for GP including trialing liquid levothyroxine

healthunlocked.com/thyroidu...

Obviously GP would say vitamin D over 50nmol is “fine”

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Taytay68 profile image
Taytay68 in reply to SlowDragon

the levo brand is accord and its always the same yes, i can sleep at any time of the day, regardless of what i do, and i know the GP is right in saying i need to give it time, and if all i had to do was sleep that would be okay..but im literally dying on my feet at work, ive explained my wrists swell my ankles swell my whole body hurts even laying down..and he just said ill give you some citalapam to see if that helps ........... i was just lost for words

SlowDragon profile image
SlowDragonAdministrator in reply to Taytay68

They get bonus payments for patients on antidepressants

Get list of recommended thyroid specialist endocrinologist, work out who you want to see

An NHS referral likely long wait and often if results are within range appointment is refused

Can you find vitamin D result

Taytay68 profile image
Taytay68 in reply to SlowDragon

ill speak to the doctor on Monday and ask if he will add 25mg to see if it helps with symptoms and check the vit D result with them as well, its not on the list but i was sure he told me it was fine..again their fine isnt optimal for us, this i am learning. Ihad no idea about the antidepressants.. shocking!

An thank you for advice on thyroid specialist, ill look into that now.

SlowDragon profile image
SlowDragonAdministrator in reply to Taytay68

How much do you weigh in kilo approx

Guidelines could help you argue for next dose increase

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...

Guidelines are just that ....guidelines.

Some people need more ….some less

healthunlocked.com/thyroidu...

Pippi39 profile image
Pippi39 in reply to SlowDragon

They get bonus payments for patients on antidepressants

Please tell me this is a joke?!!

SlowDragon profile image
SlowDragonAdministrator in reply to Pippi39

bbc.co.uk/news/health-29718618

pharmaceutical-journal.com/...

tattybogle profile image
tattybogle in reply to Pippi39

i think they also get QOF ? points for patient's on statins. this benefit's the surgery financially. I vaguely remember a few years ago they used to get points for keeping a list? of hypothyroid patients, but not anymore.

so there are indirect incentives to offer antidepressants/statins.. and no incentives to diagnose hypothyroidism.

i'm not 100% sure of current facts though

SlowDragon profile image
SlowDragonAdministrator

Ft4 is 72% through range

Ft3 is 50% through range so it’s not dire

If vitamin D is low, this might just improve Ft3 enough

How long have you been on 50mcg levothyroxine

Some people have success in raising TSH higher by splitting dose taking 25mcg waking and 25mcg bedtime ……bit of a faff but possibly worth trying if you can’t get dose increase in levothyroxine

Request referral to thyroid specialist endocrinologist

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

tukadmin@thyroiduk.org

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 50-60% 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

So you must test vitamin D

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

SeasideSusie profile image
SeasideSusieAdministrator

Taytay68

there are a couple of observations on my full blood count, is anyone able to look for me and explain,

What exactly? I can't see anything, they all seem to be in range. Or am I missing something?

B12: 343ng/L

This is low. Some people with B12 in the 300s have been found to need B12 injections.

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

b12 100ug,

Is that a typo, is it really 100mcg or should that be 1,000mcg B12?

Is it methylcobalamin or cyanocobalamin?

b complex,

Which B Complex are you taking?

Hi thanks for replying, maybe i confused the word observation with thinking it meant something,Ill look into the B12 links, thanks for those.

Vitabiotics is the brand for the complex.

and the b12 is the holland and barret one and it does say 100ug ive no idea which of these it is methylcobalamin or cyanocobalamin

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