Low levels and symptoms but no help

[Christy52]

My TSH was hardly recognisable and t4 and free t3 at the bottom of the range. I take thyroid meds but the Consultant said my levels were at optimum for the treatment I am on and nothing else can be done. Previously was told to go private if I wanted help, so not particularly helpful. I have never felt well when levels are at the bottom of the range and currently don't now.

[pennyannie]

Hello Christy and welcome to the forum :

Well, yes, those comments are quite common so don't take it personally.

Other then empathise which doesn't really help you, we could offer constructive help if you can share your thyroid hormone blood test results and ranges with us.

We need to see at least a TSH, T3 and T4 plus the ranges, usually printed alongside the results.

This is where we all start off, and the first step back to better health with help through this amazing forum and Thyroid UK which is the charity who support us.

[Christy52 in reply to pennyannie]

Thank you for responding, TSH 0.05, range 0.2-4.2free t3 3.8, range 3.1-6.8

t4 12.8, range 11-23

I had taken my meds that morning as well

[pennyannie in reply to Christy52]

Thank you ;

What have you been diagnosed with and what medication are you taking ?

[Christy52 in reply to pennyannie]

Hashimotos. diagnosed 22 years ago. Levothyroxine 150mcg and Liothyrionne 20mcg all in the morning

[pennyannie in reply to Christy52]

OK - so once on any form of thyroid hormone replacement you need to be dosed on your T3 and T4 results and not the TSH.

The TSH was originally introduced as a diagnostic tool to help in the diagnosis of hypothyroidism and it was never intended to be used once the patient was on any form of thyroid hormone replacement.

Hashimoto's is an auto immune disease and your immune system response, when triggered, is to attack your thyroid. This can causes erratic thyroid hormone production, sometimes referred to as " hyper ' type symptoms followed by your feeling even more " hypo" than before as the gland becomes further disabled and destroyed by these AI attacks.

I read of some people, sensing an AI attack coming on, stopping their medication for a few days to try and offset the severity of the attack.

Ultimately your thyroid gland becomes totally unproductive, and understand that this AI dies with the thyroid gland and you will need to be considering , at least, both T3 and T4 thyroid hormone replacement.

So I understand many people on here recommend following the protocols as explained in Dr Izabella Wentz's research and books as she too has this disease.

I understand it is as much about " healing the gut " and look at food intolerances, like gluten, dairy, wheat, so you are more able to absorb, utilise and convert the medication as much as anything else.

No thyroid hormone works well until your core strength is strong and solid and would suggest you arrange a ferritin, folate, B12 and vitamin D blood test as these all need to be maintained at optimal levels for optimal thyroid hormone replacement to work.

[Christy52 in reply to pennyannie]

Thank you thats really helpful, I will request these, I was previously low in vitamin D and Ferritin, though not B12.

If these are normal I am thinking the dose isn't enough?

[pennyannie in reply to Christy52]

There is no " normal " - there is an NHS range that is too wide to be sensible and when with a health issue you need your results optimum and not just anywhere in a range.

It may mean you need to self supplement these core strength vitamins and minerals but once we see the results and ranges you'll be advised of the next step to take, as these are your building blocks, and without a solid foundation your medication will not work as well as it might.

It's the same with the T3/T4 ranges, - yes you are in the range - but - it's about being well placed in the range for you - and that could be the difference of a couple of decimal points either this way or that - it's a balancing act within the ranges, and needs fine tuning, which can take much time and skill and it seems some consultants consider anywhere " in the range " means " job done " on their part.

[Anthea55 in reply to Christy52]

Hi Christy, you may have read on other posts that it is recommended that you take your blood tests early in the morning and don't have anything except water before the test. No breakfast, no thyroid meds until after taking the test.

TSH should be at it's highest early in the morning and can vary during the day.

Were these tests done by you or the consultant and what time of day?

[Christy52 in reply to Anthea55]

They were done at the gp surgery in the morning

[Lalatoot]

Low TSH with low FT4 and lowFt3 point to central hypothyroidism where the problem lies with the pituitary gland rather than the thyroid.

[Christy52 in reply to Lalatoot]

Thankyou. I do take t3, Im thinking that does lower TSH even if the other levels are also low?

[Lalatoot in reply to Christy52]

Yes it does. So in that case you are needing an increase in doses.

[tattybogle]

yes, taking T3 does seem to have a greater 'lowering' effect on TSH than an equivalent amount of Levo would ... but aside from the 'why is TSH so low ' question .......i'm surprised GP isn't questioning why a relatively large dose of Levo and also T3, is not appearing as higher fT3/fT4 levels in the blood. . How long a gap do you leave after taking last dose of levo /T3 before doing the blood tests ?

[Christy52 in reply to tattybogle]

Hi

To be honest I haven't left the 24 hours before testing, but that would make the results worse wouldn't it? due to short effect of t3, the gp was sympathetic, but the consultant wasnt

[tattybogle in reply to Christy52]

if you had left the recommended 8 -12 hrs from last dose T3 ,and 24hrs from last dose levo.. then fT4 and fT3 results would have both been lower... and given how low in range your fT4 and fT3 are ,this may have got you an fT3 /fT4 result that was under the range. and you might have had more interest from the consultant.

( it does depend on exactly how long after taking them you tested ..individual speed of digestion probably varies ,but there is a big peak of fT4 in blood approx 4/5 hrs after taking it.. not sure of it might be a bit quicker for T3 ?.. and then these will gradually lower until the next dose )

[shaws Administrator]

What you need tested is Free T4 and Free T3 and they are rarely tested by NHS doctors or endocrinologists and I don't understand why this is but probably it is more expensive to test the 'frees'.

I do not believe every GP or Endo if they're talking about thyroid hormones.

The aim, once we're diagnosed as hypothyroid, is to get sufficient replacement. In UK - only levothyroxine is prescribed initially, Levo is also known as T4 and it is an inactiv e thyroid hormone and should convert to T3 (liothyronine) which is the 'active thyroid hormone' and is needed in the millions of T3 receptor cells. Brain and heart have the most.

Rarely are the frees tested and some members get a home blood test. I shall give you a link and these are postal tests and make sure you are well hydrated a couple of days before drawing blood.

Ask GP to test B12, Vit D, iron, ferritin and folate.

thyroiduk.org/help-and-supp...