Thyroid UK
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Hi!

Hello

I have just joined. I had a partial thyroidectomy 26 years ago and haven't been the same since. I have been on antidepressant ,had therapy, but nothing really worked. I have been feeling slitly better since my GP increased my Lethyroxine from 50 to 75. I cannot keep a job for some reason even though I am a very diligent and hard working person, I get tired easily and sometimes find it hard to focus for long hours, I am in need to eat or have a drink every couple of hours.

Just wondering if anyone else have had the same experience.

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Welcome to the forum, Lucihall.

If you post your most recent thyroid results and ranges members will advise whether you are optimally dosed on 75mcg.

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Thank you. I am having my annual blood test check next week but never get the results , they only call me if there is something wrong. Shal I ask for a printed copy?

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Lucihall,

Yes, ask for the results and ranges a couple of days after the blood test which should be long enough for a GP to review and release them. Write a new post as updates may be missed.

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Welcome to our forum and I am glad you've found it and members will be along to respond to your post. However, 20 odd years on 50mcg of levothyroxine for a long time - a starting dose! when it should be increased every six weeks after a blood test of 25mcg with the aim of a TSH of 1 or lower. NOT as most doctors believe, and stop increasing dose when it reaches somewhere in the range which goes up to about 4. In other countries we are diagnosed when the TSH is 3+ but the the UK, it has to reach 10 which is shocking in itself.

It is now time to take your own health into your own hands with the help of members.

First thing you must do is request a new Blood test. It has to be at the very earliest one possible, fasting and allow a 24 hour gap between last dose of levo and the test and take afterwards.

If I was a betting woman I'd bet your TSH is around 10.

Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. I do hope the GP will do all of these for you and be considerate. You can tell him as you've been ill for 26 years and lost half your life to ill-health you deserve these tests. (some labs wont do them if TSH is in range and I don't know whether you could afford a private thyroid test but GP should definitely try his best but will do the vitamins minerals.

Get a print-out of your results, with the ranges. Ranges are important as labs differ and it helps members to respond.

Regards

p.s. tell your GP you have had advice from the NHS Choices for help/advice about thyroid gland Healthunlocked Thyroiduk.org.uk and you want to follow the advice.

(I am not medically qualified but remained undiagnosed for a very long time. I am now well as I please myself what I do and do not rely on doctors.)

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Thanks Shaws. I have already asked the doctor to ad vitamins check, they said can only do vitamin d iron and something else cannot remember. Here where I live (York) they have never asked to to star but light breakfast. Gp's are always in a hurry and don't really bother. Unfortunately due to my state of not to be able to keep a job, I cannot afford private.

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On such a small dose of Levothyroxine you are likely under medicated

Depression is classic sign of being hypothyroid because of being inadequately treated

First thing is to get hold of copies of your blood test results and ranges

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, you may need to request enhanced access. 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)

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

Essential to test FT3 plus vitamins

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)

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 ask for list of recommended thyroid specialists.

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

Suggests we need high FT4 and suppressed TSH if on Levothyroxine only in order to get high enough FT3

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

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...

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My sympathy! What shocking neglect after such a major operation.

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Please take back your life with the help that you receive on this site, I did and now feel well again. The kind people on here are brilliant. Good Luck.

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Most patients who have had a total thyroidectomy do best -on natural desiccated thyroid. Although yours was partial, you may do better on NDT. Yu are on a very low dose of thyroxine.

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Have your blood test at 8 am if possible.

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Neither 50 or 75 mcg of levothyroxine is any kind of therapeutic dose

You are badly undertreated to feel like that and probably your vitamins are low too

Go back to your GP

Insist on tests for

TSH

Free t4

Free t3

Ferritin

Folate

B12

Vitd3

Tell her you were forced to look at NHS choices website to find out why you feel so bad ....ps anti depressants will never solve results of thyroidectomy or poor treatment

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Make sure the blood test is arranged for early morning .....fasting

And on no account take your levo in the previous 24 hours as that skews results

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