This may be a little long winded and rambling so hope it makes sense.
A bit of history first.
I was diagnosed with Thyroid Cancer in 2006, which resulted in me having my thyroid and several lymph nodes removed. I was give radioactive iodine etc and the treatments were a success.
I was put on (eventually) 200mcg of Levo per day and although i struggled for energy etc accepted this for about 10 years. I was then persuaded to see a private endocrinologist who tested me (as i had started to take NDT) and he said my thyroid levels were fine, to come of the NDT and then diagnosed Chronic Fatigue. He prescribed a digestive nutrition treatment, azeo-pangen and a vegetable capsule supplement, which does seem to help.
Essentially though i would like to add the NDT into my daily routine but not sure how to reduce the Levo. I have NDT tablets which are 1 grain (65mg) containing 9mcg T3 and 38mcg of T4. Also the date on the tablets ran out in November 2018.... is this an issue?
Ive tried the GPs but they really don't seem to understand and im also not sure i have chronic fatigue as people i know with it (inc ME sufferers) can't even get out of bed. Im a 52 year old male builder about 14stone -7 and reasonably active and manage to run my own business and im still on my tools as they say, hence my reticence to believe in the Chronic Fatigue diagnoses.
ANY ADVICE is hugely welcome
From a very tired builder!!
Written by
wolthebuilder
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Well I have been diagnosed with CF and nearly so several times. For some of us, chronic fatigue symptoms occur when we’re undertreated or need T3 but aren’t prescribed it. A higher dose of Levo is worth trying. If not you could try your out-of-date NDT but there is no guarantee it will be full strength. Either way you need a follow up plan as it could be tricky getting a prescription unless you go private to the right person. Good luck.
Chronic Fatigue is often a 'diagnosis' they use when they have no real idea what's wrong with you. Makes it look like they're doing something, and that they know what they're doing, even if they don't. It's easy for them, because there's no blood test or anything to prove that you do or you don't have it. So, you can probably assume that the problem is down to you being taken off a medication that was making you better - lack of it is making you worse!
You don't say how much levo and NDT you were taking when you saw the private endo (and I take it you won't make THAT mistake again!). You are now taking 200 mcg levo, you said, but do you have any lab results to show us? It's rather essential to have full labs done before you start taking NDT again. You need TSH, FT4 and FT3. And, when you post the results on here, don't forget the ranges!
Oh, and have you ever had your antibodies tested? Do you have Hashi's? You should also get your vit D, vit B12, folate and ferritin tested before restarting NDT, because they do need to be optimal for the NDT to work well.
Very sensible advice, thanks very much. Im assuming when i ask for a blood test that they will add on the B12 and vit D to the thyroid tests or do i have to go private for that? And no i won't make the mistake of going to a private Endo again.
Never assume anything, where doctors are concerned! You would have to ask for them specifically, and even then they might not do them. But, you can get private lab tests without the intervention of a doctor. Details here:
Copy and paste your history above into your Profile so that, in future, members can look at it. They just have to click on members names and it takes you into the Profiles. Some haven't done so which means they may be asked the same question several times.
Before blood tests and levothyroxine (T4) were introduced, we were diagnosed upon our clinical symptoms alone and given a trial of NDT which was slowly increased until symptoms were relieved. NDT as you are aware contain all of the hormones a healthy gland would do.
Some hints for blood tests:
Blood draw has to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards. This helps keep the TSH at its highest and that seems to be all the professionals look at. The aim is a TSH of 1 or lower (whereas many professionals seem to believe that if it is somewhere in the range that we're on sufficient). We used to be diagnosed upon clinical symptoms in the past - now they know none at all and treat according to the TSH which is a pituitary hormone.
GP should test Vit D, iron, ferritin and folate.
Private tests can be taken - following the advice above re blood draw at the earliest etc.
Chronic fatigue is utter rubbish diagnosis. It's highly likely you are not correctly treated with adequate thyroid hormones
After thyroidectomy it's common to need addition of small dose of T3
First you really need FULL Thyroid and vitamin testing BEFORE starting on any NDT or T3
If vitamins are low, they really need supplementing to improve first
Do you have any recent blood test results and ranges you can add
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 Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)
Is this how you do your tests?
Ask GP for upto date testing including vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or 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
Do you always get same brand of Levothyroxine each prescription?
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
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
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