It is a familiar story alas: hypo symptoms on Levo alone became very bad, eventually got referral to endo, started Liothyronine (T3) trial in Oct 2021, worked great, hypo symptoms improved rapidly. But now TSH is below range and my endo wants to reduce Lio, which will bring back symptoms.
I currently take 15 mcg Lio + 75 mcg Levo, split into 5 mcg Lio at 11pm and 10 Lio + 75 Levo at 7am (1.5h before breakfast).
My latest blood test (8:30am draw, fasting, no meds since previous 7am) was:
TSH 0.02 mu/l (0.34, 5.6)
FT4 8.4 pmol/l (7.7, 15.1)
FT3 4.6 pmol/l (4.3, 6.8)
Endo says low FT4 and FT3 are irrelevant as I am not taking meds properly. He says I must take meds 3 h before blood draw and re-test. What is your recommendation for timing of Lio before bloods?
I am very keen not to reduce Lio. I spent several years on Levo alone, but hypo symptoms got very bad (constipated, crippling joint pain, weight gain, depressed, slow skipping pounding heart, insomnia…). I tried increasing to 100 mcg Levo per day but felt even sicker. Only Lio above 15 mcg has made any difference so far.
Thanks for taking time to read this and for any advice.
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Chr6
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How the hell are we supposed to improve with poor advice like this!
Sorry!
Endo says low FT4 and FT3 are irrelevant as I am not taking meds properly. He says I must take meds 3 h before blood draw and re-test. What is your recommendation for timing of Lio before bloods?
We advise a 12 hour gap between T3 dose and test, this allows the T3 to settle and the reading to be more reliable, after an initial and transient peak c 3 hrs after dosing. After 3 hrs your FT3 will be temporarily elevated....and he will try to reduce your T3 on this unreliable premise
Some of us just cannot tolerate Levo....myself included. to function I have to self medicate with high dose T3-only
I suppose this clown realises T3 reduces both TSH and FT4 and that following medication, especially added T3, TSH is no longer a reliable marker.
Refuse to reduce your T3 if it is resolving symptoms....his job is to improve your health not to adhere/respond only to numbers on a screen You are human not a machine that can be calibrated to a set number. Symptoms are important
FT3 is the most important number followed by FT4....TSH has little or no importance after diagnosis. It's a pituitary, not a thyroid, hormone and is basically a messenger, if the thyroid gland is faulty then TSH is usually a poor messenger.
You know your body better than anyone else....listen to it!
Hi DippyDame , your outrage is wonderful, made me laugh. This was just one of a gamut of lies and intimidations. He also mentioned repeatedly the dangers to heart and bones of suppressed TSH; that he has to diagnose by TSH (told him to re-read NICE 😊); that Vitamins are irrelevant; that it does not matter if I test mid-day or morning as TSH does not vary much over 3 hours 😳. That the GP will not repeat prescription if TSH is out-of-range (really?). Fortunately I had the knowledge and sources from this forum to fight back. But I fear he will prevail eventually, and I will soon have to join you on the self-medicating path. Take care 🙏
The fact that it does is testament to the scandal that is the current diagnosis and treatment of thyroid disease.
It is ruining lives!
I did not realise this until I arrived here a number of years ago, barely able to function. I thought it was just me! Not so!
Here, we understand the disease in all it's various forms (and those can be highly complex as I discovered) because collectively we have the lived experience and acquired knowledge to do this.
Have you considered taking your T3 in a single dose..perhaps in 2 steps.....that can provide the extra 'push" required to enable it to reach the nuclei of the cells where it attaches to T3 receptors and finally becomes active.
And, a strict GF diet should help the Hashi's
You're correct! If we do not respond to basic treatment, and that is if we can find a medic with the diagnostic skills to set that in motion, we have to learn and fight back.
At times we have to take control.....but what happens to those who are quietly suffering and in extremis, dying behind closed doors. Where is the help and support they need....not in many consulting rooms it appears!
Like Queen Victoria....."we are not amused!"
Your post and care underlines this!
Hopefully your new results will generate the turning point you need to improve your health.
Post them if you wish advice.....we're all here to help.
yes, always the same brands, although a complicated mix of T3 hard capsules (Roma 5 and 10 mcg), T4 Almus Accord 50mcg and T4 MercuryPharma 25 mcg. Seems ok although I often wonder how this cocktail might affect absorption. I know to avoid Teva T4 which gives me terrible palpitations.
Thanks for the advice re. 12h and splitting T3 dose. The hard capsules make splitting more tricky but I’ll try it next week as I booked a Blue Horizon full Thyroid test on Tuesday (to check everything, including cortisol, Vits, RT3). I’ll report back when I get the results.
I suspect Vits will be bad as my supplements regime has slipped. I would normally take Vit B complex (but not within 10 days of blood test), magnesium, gingko biloba, omega 3 and Vit D (when feeling particularly depressed). I often struggle with low ferritin but have yet to find a good iron supplement that does bung me up like concrete.
yes, hashimotos, quite severe, antibodies off the scale when first diagnosed.
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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
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
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Sorry about the outdated profile, the past four years have been hell at work, I will update ASAP.
Following your advice on this forum, I adopted a ‘mostly’ gluten-free about two years ago. Makes a huge difference, indeed. No more joint pain or puffy face. (‘Mostly’ means 99% of the time with the odd slippage, usually a croissant)
Not tested for Coeliac, I doubt it but it’s worth checking.
As it happens, I recently stopped eating milk, butter and cream, to see what happens. Early days yet, but easier than I feared.
Sorry if this is off topic, but where do you buy gluten free croissants? I’m excited to find out! I’ve often wondered why supermarkets don’t seem to do them - I usually shop in Tesco’s and Sainsbury’s. ( I’m cow’s dairy free too so that rules out some GF products).
'often wondered why supermarkets don’t seem to do them'
Gluten is a VITAL ingredient in croissants and similar things like true Danish pastries. Yes, you can buy such things in the gluten free aisle, and they might be 'edible', but they're not like the real thing because nothing replaces gluten successfully in my experience.
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