Had my results back today. I am baffled! As a person who was taking T3 mixed with Levo previously I struggled when taken off the T3.
I currently take 150 Levo and presume the attached are going to result in a suggested lower dose. Any thoughts folks?
Janeywales
When did you take your last dose of Levo before the test? We always advise last dose should be 24 hours before the test.
When were you taken off T3 and why?
As always, day before. Test first thing in the morning. Nothing but water before hand. Taken off T3 must be nearly 3 years ago now (need to check exact date) and hadn’t been feeling great but hadn’t convinced GP to do anything and only thing private endo prepared to do was to put me in HRT as NHS endo ‘ruled’ that I did not need it. Given that mine is immune based - can it get ‘better’
Janeywales
Given that mine is immune based - can it get ‘better’
Mine isn't autoimmune so I can't answer that from experience, but with Hashi's the immune system will attack the thyroid and eventually destroy it, so eventually there will be nothing left to attack so things should be stable, albeit hypothyroidism but without the fluctuations that Hashi's brings. But how long this takes is anybody's guess.
I think that your results clearly show that you would be better with T3 added to your Levo.
Your FT4 is slightly over range at 100.95% to produce a measly FT3 level of 30% through range. Your conversion of T4 to T3 is very poor.
How are your nutrient levels? All optimal? Optimal levels are needed for good conversion.
Do you take selenium? This is said to help conversion.
But even with optimal nutrient levels and taking selenium, I would venture to say that your conversion would still be poor.
I currently take 150 Levo and presume the attached are going to result in a suggested lower dose.
I fear you may be correct, assuming that you have a GP like the majority who firstly looks at TSH and freaks out when it's suppressed, then may look at the FT4 and freak out again as it's over range, but doesn't know anything about T3 to know that this is the most important result and that low T3 causes symptoms.
If your GP wants to reduce your dose the only thing I have to support you not having it reduced is the article by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, who states in Pulse Magazine (the professional magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Unfortunately there is nothing in the NICE guidelines about anything other than TSH.
Maybe build your case, list all the symptoms you are currently experiencing, tick list here:
thyroiduk.org/if-you-are-un...
explain how these are affecting your daily life and relationships, mention that you used to have T3 added to your Levo and how much better you were then and how you have been feeling since it was taken away.
Two options come to mind if nothing helps and your GP wants to reduce your dose.
1) Ask for a referral to an endo and put your case forward to have T3 reinstated, you may not get an NHS referral though, in which case you could try a different private endo after asking on here for recommendations.
2) If you are willing to do it, you could say that you are no longer willing to put up with a half life, you want your life back, and as you know you were so much better when you also took T3 then if the NHS wont prescribe it for you again then you will have no alternative but to source it yourself.
Thanks SeaSide Susie
Essential to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking, if any
Vitamin levels frequently crash when T3 is withdrawn
Your results show poor conversion of Ft4 to Ft3
Ft4 at top of range
Ft3 only 30% through range
Helpful calculator for working out percentage through range
Most people when adequately treated will have Ft3 at least 50-60% through range
First step is to get vitamins tested and supplement to optimal levels
Then likely to need addition of T3 prescribed again alongside levothyroxine
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
.NHS and Private
tukadmin@thyroiduk.org
Roughly where in U.K. are you
Some CCG areas are worse than others
Presumably you mean your hypothyroidism is autoimmune thyroid disease aka Hashimoto’s
Have you had coeliac blood test done
Are you on strictly gluten free diet, or tried dairy free diet
SlowDragon. I take
Vitamin C 1000 mg
Selenium 200 mcg
Zinc 40mg
Chelated magnesium 200mg
Vitamin D3 1000 lU
Vitamin B complex
Have always taken these and from time to time take Ferritin for a couple of months when it needs topping up.
Oh and no. Not gluten free but don’t eat bread or flour products for weight issues.
Essential to stop vitamin B complex a week before ALL BLOOD TESTS as biotin in vitamin B complex can falsely affect test results
Vitamin D
So you need to test vitamin D twice yea….quite possibly 1000iu not high enough dose
Many Hashimoto’s patients need much higher dose than average
Once you get vitamin D result
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Strictly Gluten free diet frequently helps or is essential
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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
lloydspharmacy.com/products...
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
hypothyroidmom.com/how-to-l...
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one
Thank you. I hadn’t appreciated the vitamin B contraindications When I speak to the Doctor next week will see what he can suggest. He’s a locum - previous relatively sympathetic GP retired. Let’s see what this one knows eh?
GP will almost certainly want to reduce your levothyroxine dose, because of low TSH which would drop Ft3 even lower
Refuse to reduce dose, and get vitamin testing and coeliac test done
My biggest concern at the mo is that my resting heart rate has dropped to 56. Now - I’m no athlete - but that seems extreme as it has been around 65 for a long time.
Typical when under medicated.
Recommend wearing a Fitbit and download weekly summary of resting heart rate and activity levels
Yup. Been doing that for about 5 years.
I typically print out 2 or 3 weekly summaries and take to consultation….resting heart rate 48-52 when under medicated and Ft4 near bottom of range
(TSH still completely suppressed as on levothyroxine plus T3)
Now with Ft4 and Ft3 approx 60% through range….resting heart rate 58-60
T3 lowers TSH so it will be low. Mine was and still is even though I came off T3 years ago. It took ages for the TSH to shift at all even lowering T4.
Karen
Please help??
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