On Thyroxine (75mg) but still do not feel right.

[BStoakes]

Hi, I was diagnosed with hypothyroidism about a year ago and have slowly gone from 25mg to 75mg of Levothyroxine. I went back to my doctor a few weeks ago to say that I still felt ill and lethargic and explained how it was having an impact on my life. The doctor arranged a further blood test but the levels read - Serum TSH level 3.7 miu/L [0.2 - 6] and was told no further action required. I have copied below the previous blood test results I had and wondered if you could shed any light on why I still feel the way I do.

Test resultVitamins(Serum);Thyroid function test;Blood haematinic levels Report, Abnormal, Make an appointment to see doctor

Coded entrySerum vitamin D level 69 nmol/L [50 - 100]

Coded entryThyroid function test

Coded entrySerum free T4 level 13.9 pmol/L [10 - 20]

Coded entrySerum vitamin B12 level 357 ng/L [180 - 910]

Coded entrySerum folate level 4.85 ng/ml [5.4 - 24]

Coded entryBlood haematinic levels

Coded entrySerum TSH level 6.3 miu/L [0.2 - 6]

Coded entryThyroid function test

Coded entryBlood haematinic levels

I was prescribed Folic tablets but have stopped them now.

Thank you in advance for any help you can give me.

[puncturedbicycle]

You are on far too low a dose of levo. Your tsh was 6.3, over the top of the range! It should be closer to 1.

Is tsh now 3.7 due to a dose increase?

The notation 'Blood haematinic levels abnormal' may indicate pernicious anaemia, I'm not sure, maybe post your results on the PAS HU: healthunlocked.com/pasoc

Everything else is quite low as well: d, folate, b12 all low.

Are you taking your levo on an empty stomach well away from supplements? Maybe try taking it at night (on an empty stomach).

[BStoakes in reply to puncturedbicycle]

My first TSH reading back in April 16 was 17.1 miu/L [0.2 - 6] .

I started off on 25mg then to 50mg and now on 75mg and I am being told no further action required. I was prescribed folate and advised to take vitamin B.

I take my Levo first thing in the morning and do not eat until at least an hour later.

[galathea]

You should be aiming to get your free t4 at the top, or just over range and the tsh below 1. You are clearly undermedicated. Have a read of the booklet by retired endocrinologist Antony Toft. He has an excellent pedigree and used to be head of the british thyroid assn.. Does your doc claim to be more expert than him? Ask him! Here is the link to his book... amazon.co.uk/Thyroid-Disord...

Xx

[Mary-intussuception]

Hi

Your present TSH at 3.7, although "in range", is still too high for someone with your diagnosis.

Did you see Endocrinologist?

If so, did they say what your target TSH is?

Did you have an Ultrasound scan of your Thyroid?

Has Hashimoto's Autoimmune Thyroiditis been eliminated or mentioned to you?

If you saw Endo in the last year, I would phone the secretary and ask to arrange for phone call from him/her. If not ask GP for referal.

You need to be listened to by a GP or Endo and your present symptoms taken seriously.

And they need to get your TSH down -much lower.

Hope this is of some help.

X

Mary

🐥

[BStoakes in reply to Mary-intussuception]

Hi Mary and galathea

I got diagnosed back in April 16 and these were the results back then.

Test resultThyroid function test Report, Abnormal, Make an appointment to see doctor, Communicate Patient

Coded entryThyroid peroxidase antibody level > 1,300 iu/mL [< 60]

Coded entryThyroid function test

Coded entrySerum TSH level 17.1 miu/L [0.2 - 6]

Coded entryThyroid function test

Coded entrySerum free T4 level 10.5 pmol/L [10 - 20]

I was first prescribed with 25mg then 50mg and now 75mg but as I mentioned, I still do not feel right.

The last blood test I had done at the doctors about a month ago said normal ( TSH at 3.7) and no further action required.

I have never been referred for an ultra-scan or to see an Endocrinologist.

Your information and advice is giving me hope because I just know that I am not right. I have booked an appointment to see my doctor and will post how I get on.

Thank you x

[Mary-intussuception in reply to BStoakes]

X

🐥

[puncturedbicycle in reply to BStoakes]

Bring some evidence (eg the Toft book, or his Pulse article which you can get from Louise [e-mail] ).

This oversight is so common, I think just about everyone here on levo has been affected by it. When on treatment, your tsh needs to be closer to 1, not 3 or 4 or 5 because it is 'normal' and in range. The range is *diagnostic* ie if you're not in range when unmedicated you have a problem but in range you're normal (controversial still, but that's a different matter).

[BStoakes in reply to Mary-intussuception]

I am still waiting to hear back from the doctor but I was just reading your advice again. You mentioned Hashimoto's Autoimmune Thyroiditis, I am sure that is what I have because I was told my immune system is fighting my thyroid. Could this be the reason why I feel the way I do perhaps? x

[Mary-intussuception in reply to BStoakes]

Yes,

Our antibodies are attacking our Thyroid gland causing it to be underactive. There is no cure for Hashimoto's. It is the Hypothyroidism that it causes which is treated.

My Endocrinologist wrote to my GP with my target TSH.

My TSH is down with the 75mcg Levothyroxine. However yours, though it has come down a lot since April 16, NEEDS to be LOWER STILL for someone with our diagnosis.

Your TSH needs to be much lower.

You may have been suffering symptoms a while before you were diagnosed. It does take some time to feel the benefit of the Levo.

You seemed to have been diagnosed by your GP.

I was wondering how 'slowly' were the increases in dose made. How long have you been on 75mcg?

I started on 50mcg increased to 75mcg after 6 - 8 weeks (can't remember- was 2011) Your Levothyroxine is working as it's brought TSH down from 17 a year ago and from 6.3 to 3.7.

Perhaps your increases were too gradual and if you've been on 75mcg a while - GP should be asked to increase to 100mcg and test again.

Hope this helps.

Your diagnosis is probably:

Hashimotos Autoimmune Thyroiditis &Hypothyroidism

XMary

🐥

[BStoakes in reply to Mary-intussuception]

Hi Mary,

I have just checked back through my records and have copied below the dates when I was prescribed an increase in my Thyroxine.

19/04/2016Serum TSH level 17.1 miu/L [0.2 - 6]Levothyroxine sodium 25microgram

29/06/2016Serum TSH level 9 miu/L [0.2 - 6]Levothyroxine sodium 50microgram

22/11/2016Serum TSH level 6.3 miu/L [0.2 - 6]Levothyroxine sodium 75microgram

07/03/2017Serum TSH level 3.7 miu/L [0.2 - 6] No further action

I appreciate your help. x

[Mary-intussuception in reply to BStoakes]

Hi again, well, I know we are started on low dose and increased gradually after retesting, but your TSH was very high and you weren't retested for over TEN weeks.

Then, even whilst still high, you were left on 50mcg for a further FIVE MONTHS. I wish I could come with you to your GP.

I don't understand why you were started on 25mcg & not 50mcg. You could also have been tested in 6-8 weeks and increased to 75mcg early June last year.

I guess you will be asking your GP for the 100mcg. If you are refused, ask for urgent referal to an Endocrinologist.

Let's hope you get it and you start to feel a bit better very soon -and much better over time.x

ps

I live in South Wales.

Thinking of you X

🐥

[BStoakes in reply to Mary-intussuception]

I am so glad that I found this site, it's helped me understand more and special thanks for your help.

Ha ha, I wish you did live near to me. I'd gladly let you come with me and sort the doctors out! I live in Warrington.

Hopefully I should get an answer soon and will most definitely keep you posted ☺☺

xx

[scottishkitty]

Your folate level is low. I also had this and felt rubbish and was prescribed folic acid for 6 months which helped a bit x

[BStoakes in reply to scottishkitty]

Yes I was prescribed folate but just for 3 months.

Thank you x

[steviecat]

Can't see the all-important Free T3 results. This is the number that will help to see where you're really at. You may have to insist that it is done.

[cazza1001]

do you have a T3 result - but your TSH is way to high still { should be under 1 and T4 and T3 in upper levels of ranges }... I received the PULSE extract below from [e-mail] - advising on dosing levels - But email her for the full article . I showed my GP this and she upped my levo having insisted I was managed at borderline for 7 years... hope it helps :

Dosage to restore euthyroidism - Dr Tony Toft

What is the correct dose of thyroxine and is there any rationale for adding in triiodothyronine?

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 serumfree 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 1.02.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and triiodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

While taking both hormones it is important serum TSH is normal and not suppressed. If the patient is still dissatisfied it should be made clear that the symptoms have nothing to do with thyroid disease or its treatment and perhaps issues at home and in the workplace should be addressed.

There is no place for the use of animal thyroid extract in the treatment of hypothyroidism. Although preparations contain both thyroxine and tri-iodothyronine, the hormone content varies between batches.5