8 days post TT

[Oreo4]

Eight days post Total Thyroidectomy, it’s been a whirlwind. Diagnosed with hypothyroidism four months ago after visiting the GP as my throat looked swollen. After being referred to the hospital four days later it was confirmed I had a goitre with nodules on both sides and they would be operating in due course. After my blood results came back I was put on 75mcg Levothyroxine.

I was feeling stressed from work and the news about my health had me feeling overwhelmed so I signed myself off. And that’s when the tiredness seem to kick in. No energy in the mornings, body felt achy and my ankle hurt when I initially try to walk. I tried to maintain my exercise routine which resulted in euphoria at the end of the session and being wiped out the next day.

Work decided to send me to see an Occupational Health Practitioner which helped give me the breathing space I needed to focus on my health.

Fast forward had a last minute cancellation (which in hindsight was a blessing), the operation went well and the recovery so far has been “non-eventful”. Now I’m adjusting to whatever my “new normal” will be. I’m currently on 100mcg of thyroxine, it’s just getting my head around the importance of having to take it to basically stay alive!!

So happy I’ve found this forum, as it helped give me information not always forthcoming from the doctors.

[greygoose]

Hi Oreo4, welcome to the forum.

I'm confused. Why did you have a TT for hypothyroidism? That's not normal procedure. Was your swollen thyroid obstructing your breathing?

[Oreo4]

Yes, it was. Sorry should have made that clear. First time posting.

[greygoose in reply to Oreo4]

That's ok. But, you had me worried for a moment! lol

Just one point, when replying to someone on this forum, you need to click on the blue 'Reply' button under their comment. Otherwise, they won't be notified that you've replied.

[SlowDragon Administrator]

You will need bloods retested 6-8 weeks after each dose change (or brand change) of Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested?

Or vitamins?

If not, request they are tested

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

I

[Hidden]

I'm in same situation, no thyroid after goitres and given Levothyroxine only.

Based upon that, some points you need to bear in mind are:

100 of Levothyroxine is unlikely to be sufficient a dose long term , 150 is more appropriate.

Just a few days after the op you will probably be feeling quite well, especially minus the lump in your throat, but that will likely change for the worse, slowly, within a couple of months.

Whatever dose of levo you may take is unlikely to do anything except keep you alive; you are likely to develop similar symptoms that you had before operation.

You will undergo numerous blood tests, but after your OPTIMUM (NOT "NORMAL") dosage has been established has been established you are most unlikly to get any further treatment or sensible advice from your GP.

By far and away the best advice I ever got from my GP, after 8 years of complaining, was for me to go away and sort myself out as she had other patients in the waiting room.

So that is what I did - I discovered that Natural Desiccated Thyroid (NDT, sometimes referred to by the brand name Armour) is perfectly legal and other generic brand are available from outside the UK, usually Thailand.

I feel that my long term health was seriously damaged during the above 8 years and wish my GP had informed me of the truth, as he was INSTRUCTED to do by the General Medical Council, by informing me of NDT despite the fact that he was effectively prohibited from Prescribing it to me. I developed severe weight gain, carpal tunnel syndrome and kidney cancer, all of which I believe would not have occurred if I had started on NDT immediately after my TT

The choice is yours on what to do - either follow your doctors instructions and probably stay ill for the rest of your life or get some NDT. There's not really any other options to take. If I had still been in employment I would have been forced to take retirement on the grounds of ill health and become unemployable, losing a great deal of money.

You're free to PM me for any other advice or information you may require.