Desperate

[Lucretzia]

I truly am. My Gp refuses to let me have a trial of T3. I know it can be sourced abroad but was wondering where from. I have a referral to an endo but don't feel too optimistic abut that after reading other comments. I am at the end of my tether. 3 years on Levo, 5 years ill. I'm now at a point where I can't do anything. I just don't know what to do

[Marz]

How are your levels if B12 - Folate - Ferritin & VitD ?? T4 will not work well if they are low .... Thyroid results with ranges too would be helpful - what dose are you on of T4 ? Lots of things need to be in place for T3 to work well.

[Lucretzia in reply to Marz]

I've had B12, folate and ferritin and vitamin D test. The latter came back slightly low but was just recommended to take a supplement which I am doing. Others were 'satisfactory'. I'll get to the GP and ask for a print out of all blood results. I'm on 75. Did go to 100 but TSH was too high and got palpitations. Thanks for your help.

[Marz in reply to Lucretzia]

Palpitations can be due to Low Iron - Folate and B12. So posting those results with ranges would be helpful. What was the VitD result and what is the supplement you are taking ? GP's often prescribe too little which makes little or no difference.

[Boohbette17]

Hi Lucretzia, I do hope you can feel well soon. I had a thought. You mention 3 yrs already on Levo & Gp refusing T3 trial. I had a similar experience ... see if endo can check for thyroid antibodies. If they are present there is clearly an attack going on & conversion issues are often hand in hand. That would be an angle to try. I also agree w Marz . Hugs🌺

[SlowDragon Administrator]

First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

You need to know results for TSH, FT4 and FT3.

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges.

Post results when you have them, members can advise

And will more willing to PM you supplier details

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

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

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

[Lucretzia in reply to SlowDragon]

Thank you so much for the information.

[Jodypody]

Pay for it to be tested yourself and take the results in and shove it under the nose of your GP

[Lucretzia in reply to Jodypody]

Thanks, will do!

[SlowDragon Administrator in reply to Lucretzia]

Most/many of us have had to fight every step of the way for the correct treatment

[kittyjoy22]

It took me 10 years of extensive research with a medical background to find an answer to the problem. All my tests are normal so why do I feel bad and have 26 symptoms. Get your free T3 and Reverse T3 test done then do a ratio between these tests, The normal range is 19-30. If it is below that then that is the problem. Your T3 receptors are blocked. The only way to fix this is with a sustained release low dose of T3. It has to come from a compounding pharmacy because they don't sell it already made up.

[Lucretzia in reply to kittyjoy22]

Thank you very much.