Please reply here are my blood test results I'm very ill.

[aliboy03]

I'm ill all the time in bed feeling like I have double flu. Here's a print out of my blood test results. My doctor has just lowered my thyroxine to a 100mg I'm sure it's not right.

[SeasideSusie Remembering]

Your GP has lowered your dose because he's been spooked by your low TSH. For some reason doctors don't seem to understand how things work.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

So your pituitary has seen that because you are supplying thyroid hormone by taking Levo it doesn't need to prod your thyroid to produce any so your TSH is low.

The actual thyroid hormone levels are what's important and those are FT4 and FT3. You didn't need the reduction in dose because your FT4 is in range.

If this was me (and I have my bolshy cow head on at the moment) I would be saying to my GP

"My FT4 is in range so I wont reduce my dose. If you want me to do so then you need to test my FT3, if that is over range then I will reduce my dose, if not then I wont".

To back this up Dr Toft 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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist. You can obtain a copy of the article by emailing [e-mail] print it and highlight question 6 to show your doctor.

I would also ask for vitamins and minerals to be tested:

Vit D

B12

Folate

Ferritin

as they all need to be optimal (not just in range) for thyroid hormone to work.

You can explain to your GP that you have taken advice from NHS Choices recommended source of information for thyroid disorders (which is ThyroidUK). Don't mention the internet or forums, they don't like it, but will find it difficult to not accept NHS Choices recommendation.

[aliboy03 in reply to SeasideSusie]

Thank you very much for all this information. I'm a my wits end with little to no help off any body. An autistic teenage son to look after and I live alone in a new house in a new area and I don't know anyone and I've had enough literally. This doctor is rubbish I've only seen her twice and I don't like her. I've spent the last four months sick in bed catching everything that's going. Can't shake illnesses off, I feel useless I'm 44 years old.

[aliboy03 in reply to SeasideSusie]

My ferritin level is 30ug/l

My serum alkaline phosphatase level was 34ul and it should be between 40/130

That was part of my liver function

[SeasideSusie Remembering in reply to aliboy03]

My ferritin level is 30ug/l

Oh dear, that is dreadful. For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. Find out what the range is and if you are at the bottom of the range you need an iron infusion. Also, low ferritin can suggest iron deficiency anaemia so it would be a good dea to have an iron panel and full blood count. I would certainly ask about iron tablets and if prescribed then take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

If you post your other vitamin and mineral results, and say what dose of supplements you are taking, we can see if you are taking enough and how far off optimal you are.

[aliboy03 in reply to SeasideSusie]

I'll post them on tomorrow as I've jad about five hours of studying about this today and am now exhausted. Am very encouraged that so many people care. Thank you for taking the time to post. I have taken notes on your comments Susie thank you.

[Naomi8 in reply to aliboy03]

If your iron is so low you will catch everything going.I think a lot of doctors do other tests when they see very low iron to rule out other issues,unless you are a menstruating woman having very heavy periods.Try another doctor in the practise?

Keep coming back to the forum!I am moving to a new house in a new area again on Friday.This forum was a massive help when I was in an Italian hill village for 8 months with depression!I still come on it when feeling lonely or low.

[Treepie1]

Not right ,in that FT4 is in range but you really need FT3 to be tested which is rarely tested. GP is going by low TSH which is not very relevant when you are on Levo.

[aliboy03 in reply to Treepie1]

Thank you

[Jazzw]

Seems odd that the doctor hasn’t retested you. Those results are 3 months old. Why only now react??

Have you been supplementing Vit D? Just wondered as it’s not bad for a hypothyroid person.

While asking for your 125μg levo reinstated (you weren’t overdosed at all), ask for your Vit B12, folate and ferritin to be tested. My money is on one or more of those being deficient.

[aliboy03 in reply to Jazzw]

The nurse forgot to tell me I needed to see the doctor and she has only recently told me. There that good not. Yes I'm hoping it's only a vitamin I'm lacking in. I take liquid d3

[aliboy03 in reply to aliboy03]

I take a lot of supplements

[aliboy03 in reply to Jazzw]

I'm reading a book called love yourself back to health by lisa sones-peck. It's a good book explains a lot about underactive thyroid and m.e etc. Vitamin supplements and lifestyle.

[shaws Administrator]

It would really be brilliant if doctors were taught properly and not believe in mythology as that is really what it is if they believe that TSH is king. TSH is fine for diagnosing but, once on thyroid hormones, they should concentrate first of all on relieving all of our clinical symptoms and make sure our FT4 and FT3 are near the upper part of the ranges and allow our TSH to be 1 or lower but they rarely test these two important hormones. I will give you a link re the 'myths' and on the second read about the FT4 and FT3.

healthunlocked.com/thyroidu...

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

The following is clinical symptoms and those which we have should be eliminated when on an optimum dose and all vitamins/minerals at optimum levels.

thyroiduk.org.uk/tuk/about_...

[aliboy03 in reply to shaws]

Have taken notes of all your information thank you.

[SlowDragon Administrator]

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

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.

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 and is especially likely to cause low vitamins and often patients find strictly gluten free diet helps significantly. Therefore essential to test antibodies

[aliboy03 in reply to SlowDragon]

Thank you for all your information.