#Confused

[Mertle78]

After a roller coaster of a year, diagnosed thyroid cancer, total thyrondectomy and RAI. I'm just trying to get my head around all the side affects of not having a thyroid and making sure my medication dosage is correct.

[Greekchick]

Hi Mertle,

Welcome to the forum. I’m so sorry to hear of all that you have been through. I have Graves and had a TT 6 months ago. If you want to read about someone else’s experience, you can click on my name and read my profile to compare.

In order to help you, we need some more information.

To begin, what symptoms are you suffering from?

Do you have your latest bloodwork which includes T4,T3, TSH and antibodies: Tg, TPO and/or TRAb?

If you can post this information, some of our expert forum members will answer you.

Wishing you all the best and looking forward to seeing the information you will post.

[Mertle78 in reply to Greekchick]

Thank you.

I'm back at the doctors next week for bloods, so I'll post the results.

Just suffering from achy joints, dry skin and really sore feet that swell randomly.

[SlowDragon Administrator]

Welcome to the forum

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

UK GP practices are supposed to offer 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 tested. Also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, when on Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. 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

After thyroidectomy you were presumably started on full replacement dose of Levothyroxine

That's usually approximately 1.6mcg per kilo of your weight

Bloods should be retested 6-8 weeks after any dose change

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.

The aim of Levothyroxine is have high enough dose that TSH is under 2. After thyroid cancer the aim is usually to get TSH significantly under one.

Very important to test conversion is going ok and to test FT3 and FT4. Results should show FT4 in top third of range and FT3 at least half way in range

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

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)

[Mertle78 in reply to SlowDragon]

Thank you, that is really good advice.

[SlowDragon Administrator in reply to Mertle78]

Come back with new post once you get results and ranges and members can advise on next steps

Getting vitamins optimal can significantly improve symptoms

Once vitamin levels are optimal and thyroid levels stable with TSH low, FT4 high....if FT3 remains low then, you may need the addition of small dose of T3

[pennyannie]

Hello Mertle

Just to add to all that has been said :-

A fully functioning working thyroid would be supporting you daily with approximately 100T4 and 10T3 and it just makes common sense to me that if there has been a medical intervention and the thyroid either surgically removed, or ablated in situ with RAI, that both these vital hormones need to be on the patients prescription for if and when needed.

Some people can get by on T4 - Levothyroxine alone, some people simply stop converting T4 into T3, at some point in time, and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient which generally sees both thyroid hormones in the upper quadrants of their ranges.

The thyroid is a major gland responsible for your physical, mental, emotional, psychological and spiritual well being, and also controls your metabolism and internal body clock and temperature.

You might like to take a look at the following book :-

Your Thyroid and How To Keep It Healthy - Dr Barry Durrant - Peatfield - written by a doctor who has hypothyroidism and it is an easy to understand, informative and useful book - we may not now have this amazing little gland but we do need to know what it does and what happens when it goes a bit haywire as we may need to compensate here, as we have lost it's power and regulatory powers.

Once with some blood test results post them on here, with the ranges, and people better able than me will you talk you through the numbers, and put you on the right road to better health.

[Mertle78 in reply to pennyannie]

Thank you, again great advice.

There is a lot I need to learn.

[Luxury4444]

Bless you. I feel for you. I just saw your post and it touched me. I hope you find the answers you need from the Forum and the Doctors. X

[Mertle78 in reply to Luxury4444]

Thank you x