Hi
Can anyone help please?
Diagnosed with under active thyroid 17 years ago and put on Levothyroxine
Diagnosed with fibromyalgia 3 years ago
Been feeling unwell so friend said has GP checked your T3 levels
Saw GP asked for this to be tested she said we don’t usually check T3 but agreed to it
TSH and T3 comeback abnormal T4 is normal
Chronic headaches feeling exhausted and sick what is wrong?
Thanks
You also need to see a TSH and FT4 results together with FT3
Can you add these results if you have them
Most likely you are on too small dose of Levothyroxine
How much Levothyroxine are you currently taking?
When was dose last increased?
Do you always get same brand of Levothyroxine
Levothyroxine is T4. This has to be converted in the body into T3
So you need to be taking high enough levels of Levothyroxine (FT4) to be able to convert into FT3
It's also extremely common to have low vitamin levels when hypothyroid, especially if under treated
Low vitamins make conversion of FT4 to FT3 much more difficult
Low vitamins are also very common if the cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
So you can have several issues
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 Thyroid antibodies are raised
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
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Fibromyalgia is frequently linked to low FT3. Being under treated for hypothyroidism is an obvious link
Thank you for all the advice
I take 75mg a day
Deficient in vitamin D take 1000 iu daily
T3 - 2.7
T4 - 17.3
TSH - 019
Would need to get test done somewhere not good with DIY test kit
TSH 0.19
Can you add the ranges on these results (figures in brackets after each result)
FT4 especially
Private tests are available including private blood draw
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
Medichecks currently have an offer on until end of May - 20% off
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).
How low was vitamin D when diagnosed as deficient?
Have you had vitamin D levels retested?
1000iu may not be high enough dose to improve levels
GP will only prescribe to bring vitamin D up to 50nmol.
Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs.
Frequently with Hashimoto's we need higher dose than average
Local CCG guidelines
clinox.info/clinical-suppor...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Ranges please we can't really comment on levels without them
I am sorry you don't feel well.
Levothyroxine is also called T4. This is an inactive hormone and it is supposed to convert to liothyronine (T3). T3 is the only active thyroid hormone and we have millions of T3 receptor cells in our body and each one needs T3 - not T4. The brain and heart have the most receptor cells.
Unfortunately it would seem that the endocrinology may have been told something else as they are fixated upon the TSH alone and believe that a TSH 'somewhere' in the range means we, the patients, should not be complaining. They fail to understand that TSH is not a thyroid hormone but comes from the pituitary gland which rises if our gland isn't producing sufficient T4/T3 to enable our body to function normally.
thyroiduk.org.uk/tuk/thyroi...
I am not surprised your T3 is abnormal either because your T4 dose is too low and it isn't converting to sufficient T3 to enable you to function and is probably why you've been diagnosed as fibromyalgia.
What you need is a private blood test and I will give you a link. These tests are home pin-prick blood tests. If you decide to do this, you need to be well hydrated a couple of days before so that blood draw is easy.
Blood tests have always to be at the very earliest, fasting (you can take water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.
Many researchers have proven that many patients feel better and recover their health when they take a T4/T3 combination.
Some members source their own T3 but it seems to be getting scarcer.
A Full Thyroid Function Test is:-
T4, T3, Free T4, free T3 and thyroid antibodies.
GP should check B12, Vit D, iron, ferritin and folate.
Some members source their own NDT (natural dessicated thyroid hormones) which contain T4, T3, T2, T1 and calcitonin. If you want to try to source (which we really shouldn't have to do especially if we're not very well) you'd need to put up a fresh post askingfor a private message to be sent to you. No information is permtted on the open forum.
When you get your results put them on a fresh post for comments and remember always to put the ranges. These are figures in brackets and labs differ and ranges are needed for comments.
thyroiduk.org.uk/tuk/testin...
Thank you for all the advice 😃
I’m a bit funny with blood so would need to go and get the private blood test done
Where would I get it done?
Can you get T3 on the NHS?
Only an Endocrinologist can prescribe T3. So you'd need to ask to be referred but you'd need to know whether or not the person would be willing so do some research if you can, as many will not prescribe. The private blood test company can arrange for you to have blood drawn near your address or maybe ask your surgery if they could do this for you. Some members might know where to source NDT - but it is trial and error for us, the patient, as some improve on T4/T3 and some on NDT. NDT used to be prescribed and in the past was the only replacement which was available. Then Big Pharma saw a way they could improve their profits and introduced T4 along with blood tests. NDT was then withdrawn from the NHS through False statements by the Association
You may only need dose increase in Levothyroxine
You're only on 75mcg dose. That's merely only one step up from starter dose of 50mcg
Getting all four vitamins tested and improving to optimal levels can help improve conversion. Then dose of Levothyroxine can be slowly increased
Most people eventually need somewhere between 100mcg and 200mcg Levothyroxine
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
nhs.uk/medicines/levothyrox...
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
I have no thyroid and take a private blood test once a year. it's through Medichecks and called ThyroidUltraVit this one will give you all of the results you require for answers. Take the test first thing and fast overnight leave of your Levo for 24 hours prior to the test. When ordering, Medichecks give you an option to have a nurse come to your home and do the test for you. I always have the nurse it's so easy.
Then post all the results with the ranges on here.
Gosh you were lucky to get a GP to test T3!
Do you have any other results that you can post which will help members advise.
Your FT3 is far too low. First thought is that your system is not converting the storage hormone T4 to the active hormone T3 which is carried, via receptors, from the blood into the cells where it gets to work.
I suspect your FT4 level is high - the result of unconverted T4 - and this may be your problem.
To aid conversion Ferritin, Folate, Vit D and Vit B12 should be optimal. Have you had these checked?
That is the first thing to try..
Beyond that you may have a faulty Dio2 gene which impairs conversion....info re private tests available from TUK.
As a last resort you may be resistant to thyroid hormone ...again info available should you need it.
Sadly medics' knowledge of thyroid issues is lamentable but you have come to the right place....I can vouch for that.
It took me about 40 years to find out why my health had declined until I could hardly function....suffice to say I'm now recovering well thanks to support from here.
I too was diagnosed with FM and CFS when my GP ran out of ideas!
There is no quick fix but there is light at the end of the tunnel
Post any results you have.... you are legally entitled to have a copy of any that are in your med records
Good luck
DD
Thank you
Been so unwell and was giving up hope!
Seems difficult to gps to help
I self medicate as do many of us
here....for exactly the reason you have given.
It works.
It may feel daunting at first but is a better option than feeling very unwell with little or no hope.
Email Dionne at Thyroid Uk for list of recommended thyroid specialists on Monday
please email Dionne at
tukadmin@thyroiduk.org
Very few endocrinologists are Thyroid specialist, most are only specialists in diabetes.
You need to see the right endocrinologist
Roughly where in the UK are you?
Thanks
I live in Stourbridge West Midlands
Was told apparently the doctors near me has endocrinologist team would they be likely to be help me or do you think wasting time and need to go straight to Endo?
Headaches and eye sight feels funny today worried need to see someone ASAP
Is it worth getting private bloods done first or will endo do them anyway?
Appreciate all your help thank you!
If you can see them soon, give that a whirl
Ask your GP to test vitamins next week and thyroid antibodies
Or get private tests if GP is unhelpful and see an endocrinologist from the recommended list
Sent you a pm re endo
Latest results please help!! 
Highly abnormal test results
Thyroid results 
Thyroid results
Abnormal liver results
