Joe2712

[Joe2712]

Hi first time on here hello everyone so my daughter has had a thyroidectamy she’s suffered with over active thyroid since she was 15 she has now had the operation which was feb this year but her thyroid levels (hormones) are not rising she’s on 200 micro g which is a pretty high level but not doing anything ,has anyone else been in this situation and wat can be done ,she goes into hosp next week to see wat they can do I’m just wanting to know wat else they can give her

[Mary-intussuception]

Has she had any nutrients levels tested and FBC?

She could ask for the following to be tested :

Vitamin D, Calcium

B12 and Folate

Ferritin.

She has most likely had a Full Blood Count recently. She could request copies of her hospital records, blood tests, scan reports, notes etc and images, without charge.

Then you could both study her notes and research.

If she is found to be in lower half of B12 ask about further testing.

Look to getting nutrients levels optimal with prescribed supplements if necessary. Never take multivitamins or multiminerals.

[Joe2712 in reply to Mary-intussuception]

My daughter is on vitamin d tablets and calcium tablets has her calcium is low still after 5 months after surgery hopefully when she goes in hosp next week they can sort her out thank you for replying

[shaws Administrator]

I am really sorry your daughter has her thyroid gland removed and she will now have to be on replacement hormones for life. Without an optimum dose she will always be unwell but when she's well enough she can also join this forum for her future health.

First of alla healthy thyroid gland produces T4 and T3 and we used to be prescribed a 'natural dessicated thyroid hormone' made from pigs' thyroid glands and was in use successfuly since 1892 and is still bought and sourced today by many.

If you are in the UK, False statements made by the British Thyroid Foundation etc caused the withdrawal from prescribing in the UK, with the result many source their own. We don't publish on the forum of where to source but can do by private message.

NDT for short 'Natural Dessicated Thyroid Hormones' and is more conducive to many who have no gland at all as it contains all of the hormones our healthy gland would have produced. Sometimes we have to try several before finding one that suits. I doubt the NHS will prescribe but it did previously before the withdrawal. I shall give you a link that one of our Advisers wrote to the BTA etc and despite three yearly reminders before his death for a response, they never did.

Many on this forum source their own.

thyroidscience.com/Criticis...

There are a selection of prices and I believe Armour is the original but may be more expensive.

Doctors or Endocrinologists should take your daughters blood test and it should be a Full Thyroid Function Test - fasting (they don't know about fasting) she can drink water - and it blood should be drawn at the earliest and have allowed a gap of 24 hours between last dose of levo and the test and take afterwards. Otherwise results will be skewed.

Some of us cannot improve on levothyroxine and some have no problem. I am one who cannot and you just feel far more unwell than before being diagnosed etc.

A good compromise is a T3/T4 combination but because the cost of T3 has been raised by the Pharma Companies by 6,000% ot was withdrawn from prescribing and setting panic amongst those that need it. It was the endocrinologists I believe who withdrew it.

However, The Lords have taken up the case and their was a Debate in the House of Lords a few weeks ago and so we hope something positive will come about with some bleeding the NHS monies.

So - to recap - alteratives to levothyroxine is T3/T4 combination or Natural Dessicated Thyroid Hormones. In use safely since 1892 and up to the present day even if withdrawn from the NHS.

Blood tests always the earliest, fasting (can drink water) and allow a gap of 24 hours between last dose of hormones and test and take afterwards.

Always get a print-out for own records and you can post if you have a query.

I wish your daughter well and most on this forum know what a struggle it is to recover. I am glad to say I have and many others.

Daughter should aslo have B12, Vit D, iron, ferritin and folate tested as deficiencies also cause symptoms.

[Joe2712 in reply to shaws]

Thank you yes she’s also on vitamin d and calcium tablets has this is still low from her operation 5 months ago she’s had her full blood count done to hopefully wen she goes in hosp next week they can sort it but it’s a long process me and her dad has had hyperthyroidism her dad had his removed and I had the radio idione done instead of the op so we to blame for this it’s sadly hereditary thank you for replying

[shaws Administrator]

A Full Thyroid Function Test is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

FT4 and FT3 are the most informative and are rarely tested. The professionals seem to test only TSH and T4 but not informative enough.

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

Both FT4 and Ft3 should be in the upper part of the range.

[greygoose]

Which levels aren't rising, Joe2712? The TSH? Or the FT4/FT3? It's really, really important that you give us the actual numbers if you want us to advise/help. Does she have a copy of her latest labs? If not, she should ask for one. It's very important that she knows exactly what is being tested and exactly what the results are. So, get the results and post them on here, and let's have a look at what is going on.

[Joe2712]

Thank you I will get some results wen we go hosp next week i never thought to ask and get them thank you