Hi all
I'm new here and have been on Levo for a year now. After initially feeling better, since about 6m in, I've felt steadily worse, but "bloods are fine". Before heading back to the GP...is there a simple Thyroid for Dummies or similar anyone can reccommend please?
Thanks in advance!
Most stuff is on line or ask questions here.
Best advice I have been given is that
‘in range’ ‘fine’ and ‘no further action’ are most commonly used. What we Thyriod patients are looking for is ‘optimal’ there is no one size fits all and once we start replacement therapy we often need results higher in range than those without a thyroid condition. All ask for your results and the ranges used.
Use this calculator to check what your through range is as this can help to understand your results
Take a look ThyroidUk symptom checker. Print it off, check the ones that apply, take it
thyroiduk.org/signs-symptom...
Do you have your latest results? It’s not unusually to need to increase your Levo several times within the first year or two untill you hit that sweet spot. Another thing that GP’s don’t seem to understand 😩
Thanks, it was last done in January and no, I wasn't given the results at the time (and didn't really think to ask over the phone as I was doing 10 other things at the time as normal)
This is the method of getting the best results from the blood test:-
Always get the very earliest appointment (even if you have to make it weeks ahead). It has to be a fasting test (you can drink water) and allow a gap of 24 hours between your last dose of thyroid hormones and the test and take it afterwards. Also ask the surgery for a print-out of your results with the ranges.
If you've not had B12, Vit D, iron, ferritin and folate tested, request these for the next blood draw along with the thyroid hormones.
The aim is a TSH of 1 or lower (not somewhere in the range as many doctors seem to think). Free T4 and Free T3 are rarely tested. You can, if you wish get a private home draw blood test who will also do a complete test i.e.:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if you've not had antibodies checked before)
Also make sure you are well-hydrated a couple of days before.
Post your results, with the ranges on a new post for comments.
GP should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.
thyroiduk.org/getting-a-dia...
Thanks, that's very useful.
Time for another test and ask for all your results past and present 🤗
How much levothyroxine are you currently taking?
Do you always get same brand of levothyroxine
What vitamin supplements are you currently taking
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
Ask GP to test vitamin levels and thyroid antibodies
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)
Get hold of last test results
And get new testing done
Only 50mg Don't consistently take anything, but have Vit D and Iron when I get round to it *hangs head in shame*
How are you feeling?
how long have you been left on 50mcg
That’s only a starter dose, and should be increased upwards in 25mcg steps
The aim of Levothyroxine is to increase the dose until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note 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
Suggest you ask GP for full thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
both TPO and TG thyroid antibodies tested at least once.
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, or if left under medicated on too low a dose of levothyroxine
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin (doesn’t include folate)
medichecks.com/products/thy...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Very important to know if cause of your hypothyroidism is autoimmune thyroid disease (hashimoto’s)
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
Come back with new post once you get hold of previous test results and get new results back
Important to work hard on keeping all four vitamins at GOOD levels
Are iron and vitamin D supplements prescribed by GP?
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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
ALWAYS get copies of your blood test results at each test
Keep good records of how feeling at each dose
And important to note which brand of levothyroxine suits you best
Many people find different brands are not interchangeable
Thanks. It feels like a lot to take in. I'm just taking over the counter VitaBiotics Vit D and Iron/B Vits. Again, I was told my iron was "low" but it wasn't worth prescribing tablets (true) but given no guidance on amount.
Feeling quite cross with the fobbing off going on. Have ordered some reading material and will come back to you all.
Thanks everyone!
Levothyroxine is an extremely fussy hormone and should always be taken on an 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 perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Strongly recommend getting FULL Thyroid and vitamin testing
Remember to stop taking any supplements that contain biotin a week before ALL blood tests as biotin can falsely affect test results
MonstersAndMen
"Your Thyroid and How to Keep it Healthy" by Dr Barry Durrant Peatfield
Thank you Susie
The Thyroid Patient's Manual by Paul Robinson - up to date with research and comprehensive in approach.
Thank you!
Hi not sure of your age or gender so this may be irrelevant but have you started taking HRT or any other medications, supplements which may affect the absorption and or effectiveness of your thyroid medications in the last six months.
Thanks for mentioning that. Still in 30s so hoping not near Menopause yet! Cycles horribly unpredictable including 2 periods in 3 weeks this month!!!
I dont know about any throid self help for dummies, sorry.
Before i started taking Levothyroxine my energy levels were terrible. Slowly my energy levels improved and i became more and more active. I forget that my energy levels are due to my medication and exhaust myself quite regularly by over doing things. When i over do things i can feel worse and then need to rest for a few days or more depending on how much i exerted myself.
I wonder if you too have increased your exception levels and worn yourself out?
Taking vitamin B complete helped me with low energy and allowed to to be more active.
As a result of increased activity my hunger levels increased and i gained more weight. Gaining weight made me feel sluggish and tired.
When your body is stressed thru exertion, disease or other your adrenals are working very hard to keep up and your endocrine system may reduce production of sex hormones as a result. A decrease in your sex hormones can make you feel dreadful too.
My blood sugar levels rose to borderline diabetic after about a year on my thyroid medication. Having a high blood sugar level can also make you feel dreadful. My vision became blurred, i craved sugary things and i had brain fog or a lack of clarity of thoughts.
Keep a watchful eye on your weight and blood sugar levels. My nhs blood results came back normal but an independent test showed i had high blood sugars .
Also my cholesterol levels were high, do you know what your cholesterol levels are. Eating seeds can reduce your cholesterol levels naturally if you find yours is high.
Hope you feel better soon.
Stop the Thyroid Madness by Janie Bowthorpe...either editions but I'd start with the first one. Janie is NOT a doctor but knows more than any doctor I've ever known about the Thyroid. Both of her books have sparked not only a website stopthethyroidmadness.com/ but a whole underground yahoo discussion group of related topics..
Recommendation 
online pharmacy recommendation 
Recommendation re supplements 
T3 recommendation 
Endocrinologist - Recommendation 
