Post Total Thyroidectomy

[Gabgawin]

Hello I'm new here. Seeking some general advice. I'm 6 weeks on from a total thyroidectomy. Currently on 150 mg of Levothyroxine and awaiting appointment on 15th Jan at Guys to get my 1st post op blood tests. Has been no follow up after the op from hospital or GP. So I was wondering what I should be on the look out for and asking when I go in for those 1st tests? Not sure I feel confident with medical professions approach-they seem very blasé. Many thanks in advance for any advice.

[shaws Administrator]

First of all Gabgawin, welcome to our forum and I'm sorry you've had a thyroidecomy.

Due to your op they have prescribed 150 or levothyroxine - levothyrxine is also called T4, which is the inactive thyroid hormone and should convert to liothyronine - called T3 - and T3 is the Active thyroid hormone needed in our millions of T3 receptor cells.

Most members take their thyroid hormone replacements when they get up in the morning and wait an hour before eating. T4 tablet should be taken with one full glass of water and wait an hour before eating. Food can interfere with the uptake of the hormone (T4) so that's why there's a gap between it and eating.

When your next blood test is due always get the earliest possible appointment - even if you make it weeks ahead. It is a fasting test (you can drink water) and allow a gap of 24 hours from your last dose and the test and take it afterwards.

Ask also for B12, Vit D, iron, ferritin and folate to be tested when your next blood test is due. If you make your appointments ahead you can choose the time, rather than the surgery maybe giving you a later blood draw.

The majority of doctors only go by the TSH (thyoid stimulating hormone) which is from the pituitary gland and it rises when our gland is struggling. The aim is a TSH of 1 or lower but some doctors think if it is 'somewhere' in the range that we're on a sufficient dose but that isn't always the case.

Always get a print-out of your results, with the ranges and post if you have a query.

Many members are knowledgeable and are willing to assist new members.

I hope you get to your optimum dose reasonably quickly and that it restores your health.

When you quote your blood test results, always put the ranges - these figures are in brackets - labs use different machines so the ranges could be different between labs.

[neckmed1 in reply to shaws]

After my TT in 2002 I tried Levothyroxine for 3 years but never got used to it, before trying Natural Desiccated Thyroid and I have been taking it for 15 years as it has less side effects.

If you read; NHS Special Pharm. Service "What clinical evidence is there to support the use of desiccated thyroid extract products?" it shows how they disregard the views and feelings of the patient,(49% for NDT / 19% Levo.) and just look at Tsh, T4 & T3. And cost.

[shaws Administrator in reply to neckmed1]

Those who should know better but don't. They have completely ignored patients' wishes and considering NDT was the very first replacement from 1892 that saved lives from then on and still does today is completely ignored by the professionals. NDT was removed several months ago, its safety has been proven from 1892 and still does if patients can source it.

I just do not understand the how the experts are so poorly trained. Those doctors who were/are sympathetic are banned from using their initiatives or lose their livelihoods.

There were no blood tests in the past and only professional diagnoses by doctors by signs/symptoms.

Withdrawal of T3 and NDT in the UK I believe was criminal and was due to the enormous rise in cost which could/should have been negotiated. They had their perfect excuse but disregarded poorly patients who were left stranded.

If the professionals were really 'professionals' they would know how to restore patients' health and allow them to be pain-free and symptom-free by signs/symptoms alone and save lots of money for the NHS but, most of all help patients to feel well and enjoy life.

In UK they banned the prescribing of NDT without notice and and left many worried and anxious but they do not care one iota it seems to me.

They also pursued doctors who were taught by the 'old school methods' and treated patients symptoms and not blood tests.

Natural Dessicated Thyroid hormones made from animals' thyroid glands - that was given from 1892 and saved lives from then on, without blood tests and all upon the skill of doctors. NDT has proven its safety and popularity since 1892. It still does today if it hadn't been withdrawn. If we were wealthy enough we could get what suited us. Oprah Winfrey and Mrs Clinton are two of many who recovered their health but not with levothyroxine. Due to the fact that many may not fully recover their health without an option that suits them is very sad and distressing.

I think the majority on this forum, would like the professionals to have their thyroid glands fail and then they would soon change their minds about NDT or adding T3 to T4.

I am surprised that doctors who we'd expect to know many clinical symptoms of hyper or hypo patients, cannot do so without a blood test - if they even think of doing one - as was done before blood tests were introduced (more money for Big Pharma). That alone would save ££££s.

verywellhealth.com/celebrit...

Just because thousands seem to do well on levothyroxine (many complain of unexplained weight gain) it doesn't mean everyone does and life becomes difficult when their body isn't functioning as it should.

[neckmed1 in reply to neckmed1]

sps.nhs.uk/articles/what-cl... Here is link, just open the attachment, the 2018 study shows 86-92% of patients felt better on NDT/DTE than Levo.

[shaws Administrator in reply to neckmed1]

The superior doctors who deny patients of the most optimum thyroid hormone replacements that restore patients health would change their minds if they, themselves, became hypothyroid and levo didn't restore their health.

[Nanaedake]

Ask for your target TSH level to be written down so you've got it to hand if you later need to discuss with GP. Ask how long your TSH should be maintained at that level.

Ask for a copy of all test results. Check whether you've lost parathyroid glands. Check calcium, vitamin D, B12, ferritin and folate levels. They all need to be optimal. Ask for a printout of the pathology report so that you have a copy for future reference.

Find a levothyroxine that suits you and stay on that formulation even when dose is changed. You can always cut tablets to make the correct dose.

Be careful how you take levothyroxine, making sure it's 4 hours apart from calcium or calcium containing foods and 2 hours apart from supplements or other meds, 4 hours apart if taking iron tablets.

Store levothyroxine carefully in room temperature or as stated in the patient information leaflet so don't leave in sun or hot car.

Always take levo with a full glass of water so it gets to where it needs to be for good absorption.

PS. There is a thyroid cancer forum too on healthunlocked.

[neckmed1 in reply to Nanaedake]

Many thanks for reply from shaws, I thought I may get told off! And thanks to Nanaedake I do most of that, but don't like supplements anyway, maybe I need more meat to boost B12 from 229? (200-960) and yes, maybe I don't need so much thyroxin after 18 years. Thanks again N.

[shaws Administrator in reply to neckmed1]

You should ask GP to test for Pernicious Anaemia (a common autoimmune disease) to ensure you do or do not have this condition. It can be serious if not supplemented by 3 monthly injections.

[neckmed1 in reply to shaws]

Thanks Shaws, will talk to GP next week

[Nanaedake in reply to neckmed1]

B12 of 229 is only just above the bottom of the range you've given. The Pernicious Anaemia Society advocate a level above 500 to ensure sufficiency and prevent neurological damage. What about your folate level?

I forgot to ask why you had a TT? I assumed cancer but could be another reason? Cancer patients have a target TSH level but for others, doctors will consider anywhere in range OK. But most people on this forum seem to feel better with a TSH level around 1.