Confused : I’ve been diagnosed with having an... - Thyroid UK

Thyroid UK

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Nicbrown profile image

I’ve been diagnosed with having an under active thyroid for about a year now and I’m currently on 75mg levothyroxine. But just recently I feel confused quite often and my mood swings are happening more often. And to top it off my feet feel like they are on fire if I stand still for too long. I had a blood test about 7 weeks ago and I was told it was fine but I just don’t feel myself. Do you think it would be worth me even going to the the drs? I just feel that the drs don’t seem overly interested when it comes to thyroid issues 🙈

15 Replies

Have you been tested for antibodies , have you been told you have Hashimotos ?

When did you have your last test? You should be retested six weeks after starting a new dose. 75 mcg is not a very big dose, so you could very well be under-medicated. But you're right, the majority of doctors aren't in the least interested in thyroid unless they, or someone in their family, suffer from it.

SeasideSusie profile image

What are you latest test results? If you post them with their reference ranges member can comment.

If you don't have your result then ask your surgery reception for a print out, we are legally entitled to our test results under the Data Protection Act here in the UK. Don't accept hand written or verbal results as mistakes can be made, make sure you get a print out.

Just a comment: I hate the word "Fine!" when it comes to lab values. It is meaningless. And "within normal limits" is not a great phrase. IMO.

shaws profile image

Words doctors should avoid when patients have had a blood test for their thyroid gland and these are:-

'normal', 'fine', and o.k.

All blood tests have to be at the very earliest, fasting (you can drink water) and levo should be taken first thing on an empty stomach with one full glass of water and wait an hour before eating. This procedure gives us the best outcome as the TSH reduces throughout the day.

If you've not had B12, Vit D, iron, ferritin and folate tested ask for these next time your blood test is due.

You now need another blood test and if GP comments say you have clinical symptoms and don't feel well. Tick off the ones you have:-

Vitamins/minerals also have to be optimal for our body to work in unison.

The aim is for TSH to be 1 or lower with Free T4 and Free T3 in the upper part of the range but the NHS thinks these don't need to be taken but you can have them privately if you wish. Read about the FT4 and FT3 in the following link:-

Countrykitten profile image
Countrykitten in reply to shaws

I'd add the word Satisfactory to that list. The Drs may be satisfied but we're not if we still feel ill.

shaws profile image
shawsAdministrator in reply to Countrykitten

Being hypothyroid and being treated with hormones, the aim of which is to relieve all clinical symptoms. Instead doctors think it is to get the TSH 'in range' and many believe 'somewhere in it' is sufficient so the poor patient suffers.

If you can afford it see an endocrinologist privately because the tests done by the NHS are frankly pointless! I was originally put on 75mg of levothyroxine and have had ten years of migraines, high mood, low mood - hospitalised as "severely depressed" and finally treated for bipolar. I found someone privately and have been on natural dessicated thyroid for two years and have never looked back. Migraines gone from the day I took the last levothyroxine tablet, mood and confidence back to normal. The psychiatrist won't put it in writing but agrees that everything has been my underactive thyroid and not getting the right treatment. If you can't afford private treatment then insist your doctor refers you to the NHS endocrinology department as they will if pushed do the correct blood tests to check your T3 and T4 and other things necessary to see if you can benefit from T3 added to your current T4 only treatment. Good luck because it's taken me a long time to get where I am.

k8Hi profile image
k8Hi in reply to

Thank you for posting this, I am going to ask for a referral from my GP (and if not available or ineffective), will look into seeing an endocrinologist privately). I am sure that all my problems are linked. Was it expensive privately? How many visits has it taken to get answers? Are you on different medication now? Every time I go to my GP, my dose is increased but I never feel any better. I'm really glad to hear that you have got answers and are feeling much better.

in reply to k8Hi


I pay £175 to see my endocrinologist and I only now see him once a year. My NDT prescription is sent through the post and emailed and then I can email it to the pharmacy my endocrinologist recommended to me. They post the medication and I get three months supply at a time which costs just over £90 and I take 60mg daily. I have never felt so good as I feel now except for before the dreadful experience of an underactive thyroid started. I hope this helps

When you have posted your latest blood test results on here with the ranges you will receive answers. Did you take the test first thing on an empty stomach?

You could always do blood tests through blue horizon or medichecks these will give you a true picture but you have to pay but it's well worth it.

Hi Nicbrown,

A lot of good advice here.

Remember if you call the Dr's, the receptionist, who are not medically trained are reading from a script. They do not know what they are talking about and always ask for the results and ranges. Then ask for a call back from the GP or an appointment.

75 mcg is quite a low dose still and only an introduction to what you might be on or should be on. At the end of the day, we can live without a thyroid BUT NOT the two hormones it produces. So so important to be correct for our well being. So "Ok, normal and fine" are not acceptable. TSH levels are not a good indicator either. It is the T4/T3 levels that are important although most NHS GP's rarely test the T3 these days because of the price of medication.

As Shaws has already pointed out, never take medication before a blood test and always an hour before food on a empty stomach.

If you are not happy, ask to be referred to a Endo, or just change practices.

None of these Dr's really understand thyroid conditions and it is ridiculous in this day and age as it is so easy to correct.

Please seek a second opinion and get your results, you can then compare them after each test and also keeps them on their toes ;)

Take care :) x

SlowDragon profile image

First thing is, do you have any actual blood test results? if not will need to get hold of copies

UK GP practices are supposed to offer 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.

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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

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 plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 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

The feet on fire sounds like b12 deficiency which often goes hand in hand with Hashimoto's. Perhaps post on the Pernicious Anaemia site for their advice? Both the Pernicious Anaemia Society and B12 Deficiency charity have more on symptoms of b12 anaemia.

That could be diabetic.

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