Hi all
I'm still very green about hypothyroidism but slowly learning.
Ive noticed people mentioning they're taking T3. My doctor doesn't even supply the T3 test let alone the treatment.
I'm considering going to an Endocronoligist to get all my tests done including vitamins. Can anyone suggest one please?
Thank you.
It's virtually impossible to get GP (or standard endocrinologist) to test FT3, hence thousands on here forced to test privately
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, or if inadequately treated
Recommended on here that 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?
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
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_...
How much Levothyroxine are you currently taking?
What are your most recent blood test results and ranges?
Getting full Thyroid and vitamin testing is often first step to recovery, BEFORE seeing any endocrinologist
Vitamins need regular testing and frequently regular supplementing to maintain optimal levels. This helps conversion of FT4 to FT3
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
tukadmin@thyroiduk.org
Thank you. I did have a private tests via Blue Horizon except the vitamins.
Hi you had tests blue horizon but where or how can I do this pls
See my first reply above gives details on how and where to order testing
Important to do test early morning and fasting, no Levo in 24 hours prior to test
Testing vitamins and thyroid
Blue Horizon is on line.
T4 130 (59-154)
Tsh 0.30 (0.27-4.2)
Free thyroxine 20.2 (12-22)
Free T3 4.4 (3.1-6.8)
TA 61.2 (0-115)
TP 10.8 (0.34)
Shows poor conversion, so it would be worth getting vitamins tested in case those are the reason for it. If not, you need t3 or NDT.
Would agree with Angel_of_the_North next step is to test vitamins
Have antibodies ever been high?
Yes they were high in 2012.
Then the cause of your hypothyroidism is Hashimoto's, also more likely called autoimmune thyroid disease by your GP
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy online for under £20, just to rule it out
chriskresser.com/the-gluten...
amymyersmd.com/2017/02/3-im...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
I've been gluten dairy and soy free for 10 weeks. I've lost 1.5stone in that time. I have gut healing recipes which I do use.
What is NDT?
Thanks.
Great that diet changes are working so well
Your next step is to get thyroid and vitamin levels retested
Often this diet change can be enough to improve conversion of FT4 to FT3
Next is getting vitamin levels optimal and retesting thyroid and vitamins 6-8 weeks after improving all vitamins
If, after that, FT3 remains low then look at getting prescribed small dose of T3
Some prefer NDT - natural dessicated thyroid - e.g. Armour, Efra etc
thyroiduk.org.uk/tuk/treatm...
But NDT doesn't suit everyone. Lots of us prefer T3 in combination with Levothyroxine. It's very flexible in being able to make small adjustments in dose of T3 or Levothyroxine
Email Dionne at Thyroid Uk for list of recommended thyroid specialists.
Thank you. Great help.
So if I were to need t3 where would I get it?
You would need to see a T3 friendly endocrinologist for prescription. It's very difficult to get prescription on NHS, but not impossible
Thyroid UK has list of recommended thyroid specialists
Yes I have the list thanks.
So I’d need to pay for the specialist and then for the t3.
🤨
First step is to get vitamins tested and optimal before any further steps
You might find an NHS endocrinologist near you on the Thyroid UK list
If there is, it might be difficult to persuade GP for referral and/or long wait. (While you Improve vitamin levels)!
Is your GP supportive? Push for a referral to an endocrinologist of your own choice
If GP is not helpful, a private consultation doesn't require GP "permission " and shorter wait
My GP has a total block when it comes to this. He says I’m healthy and in range and won’t even sign off a private blood test via our hospital which I don’t understand because I would pay for it.
Tbh I do feel well. I’ve lost weight, eat healthily and walk the beaches daily but I want to do the best for me.
Looking at the cost of these private endos and specialists I’ve decided to go via Medicheck with a home test - thyroid and vitamins.
Sounds like diet and good vitamins will be enough anyway if you are already feeling well
Full blood test to check vitamins and thyroid is best plan.
Some of us were profoundly unwell without T3. (Immobile etc) Doesn't sound like you are
No I'm not but I suppose I'm looking at a prevention approach.
Ive ordered my full thyroid blood test. Husband can draw the blood. Will let you know results.
Thanks for your advice.
Is he qualified to do that?
Or You can use private clinic for £25
If not DIY finger prick test is next option
Yes he's qualified of course!
Good morning, I have had my ultra vit test results and posted on the forum last week. My t3 is 4.69 (3.1-6.8) t4 is 20.01 (12-22), tsh 0.139 (0.27-4.2). So obviously getting plenty of t4 but not converting.
I’m working on optimising vitamins, gluten soy and dairy free, don’t drink or smoke (never have), exercise - long walks, eating healthy foods, therefore doing what I can as far as I know to help myself.
I’ve seen the article on D102 on the Thyroid Uk website and I’d like to have it done for peace of mind and to eliminate the guesswork.
Would appreciate your view on this.
Many thanks.
Juanita
Yes, I think it worth doing. I tested positive (Heterozygous- from one parent). Helped get funding for my T3 on NHS
I would consider doing the Blue Horizon DNA test as its more comprehensive
Sometimes on offer at £99 (I am waiting for an offer price to order it myself)
bluehorizonmedicals.co.uk/t...
Alternatively Regenerus is the official medical test for just DIO2 - you have to pay for the counselling
thyroiduk.org.uk/tuk/testin...
Thank you. If I’m positive does it mean I’m hurtling towards cognition impairment/dementia?
I have no idea.
But getting Thyroid hormones optimal, if test positive for DIO2, must be a step in the right direction
Certainly my brain fog improved significantly with correct vitamin levels, and futher slow steady improvement once strictly gluten free diet. Icing on the cake for brain function was addition of T3. (Plus I was virtually physically immobile on just Levothyroxine)
Some CCG's are currently refusing to prescribe (directly against guidelines) regardless of clinical need
You can look your own CCG area record up here
Search Liothyronine
Plus CCG area
Ccg?
Use to be called local area health authorities
If in England (not Scotland) these were replaced by CCG's - Clinical commissioning groups, who decide on budgets, what they will and won't treat etc
Scotland has Health Boards. Same thing, different name
British Thyroid Association statement on T3 debarcle
british-thyroid-association...
Recent debates in parliament
theyworkforyou.com/search/?...
Dossier presented to Government November 2018
drive.google.com/file/d/1c2...
Post about T3
healthunlocked.com/thyroidu...
Liothyronine gender inequality
england.nhs.uk/wp-content/u...
Recent media coverage
thyroidtrust.org/media-cove...
medscape.com/viewarticle/90...
thetimes.co.uk/article/mill...
CCG's are not entitled to override national guidelines, so a robust challenge is frequently required if NHS endocrinologist does agree clinical need for Liothyronine
caretobedifferent.co.uk/ove...
I’m in tears here. So upset to even think I could have this problem and then the hurdle of being prescribed t3 if needed. Plus the cost of this test.
Labs update starting t3 
T3 timings
