Imminent Thyroidectomy - nervous of nhs meds system, what to expect

[Nixnoonoo]

Hi there! I’m a bit of a newbie here- had half my thyroid removed a month ago and they are removing the rest in January. Been gaining weight and losing hair for about a year - although thyroid levels have always been normal according to nhs. They are removed the first half due to a large nodule ( not cancerous) but picked up traces indicating possible cancer in other side, so removing it . My question is...what to expect with NHS and medication? Are they really that bad at being sympathetic with meds that so many people here seem to be going private or self medicating? Getting a bit worried

[DoeStewart]

Hi, good luck with your operation to remove the rest of your thyroid, speedy recovery. I had 7/8ths thyroid removed 32 years ago, not for cancer but because it had gone rogue after the birth of my first child. I hope the medication side has improved since I had my operation and I'm sure people who have had their thyroid removed will come on and reassure you of this. I wish you good health.

[Hennerton]

The best people to ask are your own doctors, as they and your CCG hold the purse strings. Also speak to your consultant and have information to give all of them regarding the necessity for thyroidectomy patients to be given both hormones. You will automatically be given Levothyroxine but you need an assurance, in writing, that they will supply Liothyronine if your blood test levels show that you need it. You will probably find, as I did, that you manage well at first on just Levothyroxine. A few years later, I began to suffer innumerable odd health problems - things I had never had before and I began to wake up to my own health issues. I discovered I was not converting the Levo to active T3. Fortunately I was able to see someone privately, who gave me my first ever prescription for Liothyronine, T3. I have been on it now since 2012 and am always nervous it will be taken away from me, as many members have suffered on this site. Be firm at this stage. You are still in control. You will not feel as strong a few years down the line, if you are not being treated properly and it will be more difficult to get agreement.

There are several studies showing that thyroidectomy patients need T3 but I hope someone else will come in with the links for you, as I do not currently have any to hand.

[SlowDragon Administrator]

Would recommend getting full Thyroid and vitamin testing done before removal of thyroid if possible

Sounds like you might have had issues already.

Presumably you had thyroid blood tests already?....do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

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.

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

New Guidelines on dose replacement is 1.6mcg of Levothyroxine per kilo of your weight. You will probably be started at this dose

nice.org.uk/guidance/ng145/...

1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

But if you have Hashimoto's or low vitamin levels you might need to be started on lower dose initially

Getting vitamins optimal helps Thyroid hormones

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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

For thyroid including antibodies and vitamins

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

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 .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)