Thyroid UK
90,553 members104,932 posts

Still feeling awful , even with levothyroxine

Hi. I'm new to this forum and desperately need some help.

I'm been diagnosed with boardline hypothyroidism about 7yrs ago. I started with 25mcg and then upped to 50mcg about 4 years ago. BUT I still have so many symptoms, fatigue, total exhaustion, can't get out of bed, severe hair loss and severe headaches ( burning sensation on top of my head, is it linked with thyroid?) Short term memory is non existent, low mood, don't feel alert and yawn a lot even tho I've had a full nights sleep.

My doc keep saying my range are normal. I want to ask him to add t3, will that help? Will have to beg.

I'm also on multivitamins, zinc, but d, iron , magnesium.

My ranges are below, just had them done last week.

T4 (16.2 PMOL/L)

TSH ( 3.27UM/L)

Any suggestions will be highly appreciated.

If I was to add t3 , how much would I take with levothyroxine? I don't trust my doc at all. He doesn't listen to my symptoms but looks at the range.

Thank you all

11 Replies
oldestnewest

Your doctor is ignorant of how to correctly treat hypothyroid

You are clearly undertreated and not converting the t4 in levo into the T3 every cell needs to function

Without test results for

Ferritin

Folate

B12

Vitd3

Its hard to establish why

But essentially yes either addition of T3 or maybe switch to NDT would be best way fwd

Reply

Thank you for you're reply. I've recently had blood test for all of the above ad came back normal. So gp is saying nothing is wrong as tft and all routine blood work are all ok..

So fed up of feeling ill all the time

Reply

'Normal' is a word we do not want to hear if we have been diagnosed as hypothyroid but that is where many, many doctors fall down on treating someone who has hypothyroidism.

First, in the UK we aren't diagnosed until the TSH is 10 (usually) but in other countries we are diagnosed around 3+.

In the UK once on levothyroxine, the aim is to get the TSH to around 1 or lower (whatever makes the patient feel well). Many doctors think somewhere in the range is fine so you have to state you want a TSH of 1 or lower. We also need the Free T4 and Free T3 in the upper part of the range but these are rarely tested. Probably a money saver but not when patients have to take 'extras' to try to control symptoms.

Get a print-out of your most recent blood test and get one each time you have a test (for your own records) and you can post them for comments with the aim of getting relief of symptoms.

Blood tests have always to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take afterwards. This method allows our TSH to be at its highest as that's all GPs seem to take notice of.

Also request B12, Vit D, iron, ferritin and folate to be tested next time as everything has to be optimum.

I'd make the blood test in advance so that you have the choice of the earliest appointment.

Reply

Thank you for the reply Shaws.

I've had my iron ferritin folate B12 tested and again all was normal.

I did fast for that above test. And tbh I stopped taking Levo for a week before I had that test done cos I thrt that particular brand was making me feel worse (mercury Parma)

I do u get the doc to lower the THS?

Would you say 50mcg is too low for me and if I add a T3 how much would I take? (Will order online privately).

I've been like this for years now and it feels so devastating not being able to feel well again.😓

Reply

Your GP has no right to say "normal" it means zip

Always insist on recieving actual results inc ref ranges and keep a file

Reply

As you haven't given the reference ranges it's not possible to interpret your FT4 result. Ranges vary from lab to lab

My lab range is 7-17, we see 9-19 and 12-22, so you could be midway through range or at the very top. Also, you need FT3 testing to see if you are converting T4 to T3 well enough or whether you need to add T3.

You can get private fingerprick blood tests to do at home which will give you the full thyroid panel - Medichecks or Blue Horizon.

Reply

Thank you..

Tbh my doc did order a ft3 but it never got tested at the lab! (Werid)

What's the ref ranges btw?

I will look at the private ones. Thank you

Reply

I believe that if the TSH and FT4 are 'in range' the lab doesn't other tests, even if GP requests. This is the reason why both Frees are necessary:-

thyroiduk.org.uk/tuk/testin...

Reply

When on Levothyroxine we need dose high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Also request recommended list of thyroid specialists, in case your GP remains unhelpful

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to increase FT3 high enough

rcpe.ac.uk/sites/default/fi...

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 plus vitamins

As you are under medicated and have been some time vitamins are likely low

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test,, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

Reply

Hi Maya,

Your TSH level is too high for someone who is taking levothyroxine. It should be below 1.

I see that SlowDragon has explained that above but just making the point again as its important. Take the article by Dr. Toft to your doctor. He is probably following the guidelines that say TSH should be over 10 before they act. That is inhumane in my opinion but it refers to people who are NOT taking levothyroxine.

If you are taking levothyroxine, it needs to be below 1.

Reply

Thank you Bluemaxx. Yes it seems too high if it needs to be below 1. So is 50mcg is not a high even dose?

How can I get the levels down?

Reply

You may also like...