Can anyone help with an alternative to T4 in the uk without needing a prescription as my gp will not help.

[Marfem]

I’m on 150mg of levothyroxine for more than 3 year. It does absolutely nothing. I’m getting worse as I get older. I’ve been researching for an alternative and came across Armour and a few others. Can anyone advise if this works or if anyone knows of somewhere reputable that can provide a safe alternative source to T4 that works? Thank you in advance.

[SeasideSusie Remembering]

Hi Marfem

It might be better to start with trying to find out why doesn't your 150mcg Levothyroxine work.

Armour, and other NDTs, work for some people but not others, same as Levo works for some people and not others.

Firstly, are you taking Levo as we advise in order that nothing affects it's absorption:

* on an empty stomach, one hour before food or two hours after

* with a glass of water only, and water only for one hour either side

* no other medication or supplements at the same time as Levo - there should be at least a two hour gap, some need four hours (iron, calcium, Vit D, magnesium, HRT).

* if you take other medication, have you checked to see that it doesn't interact with or affect Levo in any way

Next, are your nutrient levels optimal? We need optimal levels for thyroid hormones to work properly, so we need to test:

Vit D

B12

Folate

Ferritin

If you have had these tested please post the results, with their reference ranges, plus units of measurement for Vit D and B12. If levels are low or deficient we can suggest how you can optimise them.

What are your current thyroid test results? Please post them, with their reference ranges (these vary from lab to lab) so that we can see if you are optimally medicated and whether or not you are converting T4 into T3. T4 (Levo) is a storage hormone and has to be converted into T3 which is the active hormone that every cell in our bodies need. Low T3 causes symptoms so we need to test TSH, FT4 and FT3 at the same time and this will tell us how well we convert.

If you can't get all these tests done with your GP then we have recommended private labs that do test bundles which can be done by fingerprick or, for extra cost venous blood draw can be arranged.

[Marfem in reply to SeasideSusie]

Thank you. How do I get these results just ask the GP for them? I had a test not long ago and apparently they came back normal and that was all the feedback I got given. Is there a recommended private testing company? Thank you in advance

[SeasideSusie Remembering in reply to Marfem]

Marfem

You just ask the receptionist for a print out of your results (never ask the doctor, they don't like us knowing too much!). In the UK we are legally entitled to our test results without charge or question. Don't accept hand written or verbal results as mistakes can be made, always get a print out of any tests you have done.

We have a few recommended private labs here:

thyroiduk.org/help-and-supp...

The most popular test bundles are

Medichecks Advanced Thyroid Test

or

Blue Horizon Thyroid Premium Gold

Both cover all the tests needed.

There are discount codes for both.

[fuchsia-pink in reply to Marfem]

"Normal" is such a pointless, dangerous LAZY word ... you want actual numbers and the related lab range (these vary from lab to lab) - and the right tests doing - not just TSH and, if you're lucky, free T4.

For example, the "normal" lab range for free T4 might be 12 - 22. If your result is 12.5 you will likely feel dreadful - but if it's 19.5 you will feel sooo much better. But both are "in range" and therefore "normal" to a bored half-asleep GP.

\you really really need your GP to test: TSH, free T4, free T3 and the nutrients SeasideSusie has mentioned. [Always an early morning fasting blood test when TSH is highest]. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK - good luck x

[helvella Administrator Thyroid UK in reply to fuchsia-pink]

Marfem just might find the article below (and the full paper which you can access) interesting and/or useful.

The normal range: it is not normal and it is not a range

1. Martin Brunel Whyte

2. Philip Kelly

Abstract

The NHS ‘Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ‘normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ‘reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding.

dx.doi.org/10.1136/postgrad...

pmj.bmj.com/content/94/1117...

[Poniesrfun in reply to helvella]

This is such good information. So much of good medicine is looking at trends rather than absolute values. I was fortunate to learn (as a nurse) from a medical director to "treat the patient, not the numbers".

Patti in AZ

[SLF11 in reply to SeasideSusie]

Hi

Sorry for jumping on this post but I’m new to this forum (and only a year diagnosed) and just wanted to say how, in only one post, you have given me so much more info about Levo than I have received from my own doctor! The info you all share is invaluable. Just a quick query but I’ve seen reference to ensuring optimal levels of selenium, zinc, magnesium (and iodine?) too. Do the kits you recommend also test for these or would I need to do this separately?

Many thanks again.

[SeasideSusie Remembering in reply to SLF11]

SLF11

I'm glad you've found the information helpful 😊

Magnesium is included in Blue Horizon Premium Gold test. However, testing magnesium is unreliable. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.

A red cell magnesium test is the better indicator of magnesium status, not the standard serum magnesium test.

If you want to read the science, this information is from this article:

ncbi.nlm.nih.gov/pmc/articl...

Selenium, zinc and iodine would need to be tested separately, nobody includes those in a test bundle. If you want to test iodine then don't rely on the "patch" test as this has been debunked, the best test is a non-loading urine test which Genova Diagnostics offer.

[SLF11 in reply to SeasideSusie]

Thanks so much!

[JuliaWM]

it is a very long time ago now that I was diagnosed with hashimotos disease. my parents met a doctor at the wedding of other doctors.he was a harley street endocrinologist. they siad how unwell I was. he said send her tto me. I went for one Harley street appointment and then he wisked meinto the NHs system and I has full diagnosis and treatment.maybe you should just find a good endocrinologist who does some private work and try going that way. GPs are very ignorant about many conditions. it could be you need T3 as well as T4> if you can possibly afford at least one priavte apointment try that way. good luck. Julia.