This is my first time posting although I've been following for a while. Im always really impressed by the level of knowledge in the community. So hoping you can offer me some advice.
I've was diagnosed hypothyroidism around 20 years ago initially supplemented with thyroxine only, with T3 added around 2016 by am endocrinologist. Despite this I've never felt particularly well, just really put up with a lot of symptoms medication adjusted by GP with no real change.
my TSH has always been low between undetectable and 0.02 over the last 5-6 years. My T3 & T4 also lowish. Anytime they come up a little the GP reduces medication as he says TSH is suppressed.
over last year or two becoming more symptomatic- increasing weight despite careful diet & exercising. Hair loss, joint swelling & pain fatigue etc. So after following the group I decided to test privately and try and optimise my levels to see if it would make a difference.
currently prescribed levothyroxine 100mcg daily. Liothronine 30mcg day.
test done as recommended- before 9.00am no medication for more than 24hrs.
1/12/23 test results from moniter my health
I have not yet had my anaemia profile, vitamin D or B12 tested as moniter my health would only send one test at a time. However, I normally take supplements multivitamins B12, and vitamin D. I discontinued these one week before testing.
TPO - 148 - high but not a surprise Lots of familial autoimmune conditions
TSH 0.02 (0.27 - 4.2)
T3 4.4 ( 3.0 - 6.8)
T4 14.4 (12 - 22)
Any advice on next stage much appreciated
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Chineseted
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Hi and welcome.Forum advises T3 dose is split on day before test so you have some T3 I think it is 10 hours before. I will dig out link when not on phone.
This will make your T3 result a bit lower than forum "standard"
It was about 30% through range.
Do you take T3 as single dose ?
Have you tried gluten free. Many of us autoimmune types cannot tolerate it.
You may also want to cut out high FODMAP foods as well, especially onions and garlic. Going gluten free helped me somewhat, but it was after I cut out high FODMAP foods is when I began to notice little to no more pains, fatigue, hair loss and gastro symptoms. I am back to eating SOME gluten foods without any issues. It was a lot of trial and error figuring out what foods triggered symptoms. Dairy is another one. I can eat dairy cheese without issues, but if I drink milk, my stomach growling becomes extremely hyperactive, it sounds demonic.
High thyroid antibodies confirms autoimmune thyroid disease aka Hashimoto’s
has your GP done coeliac test if not get that done BEFORE trialing gluten free diet
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
Hi Thank you for the reply lots of information there. I did have a coeliac test many years ago. Probably when i was referred to endo im thinking so around 16yrs?? negative at the time although i do often have gut symptoms and have had oesophageal symptoms, swallowing, feeling like foods stuck etc for a few years. Been investigated, had an endoscopy but again inconclusive. I will definingly retest and try the gluten free diet to see if it helps.
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Your test
no medication for more than 24hrs.
How much longer than 24 hours
Last dose levothyroxine 24 hours
Last dose T3 approximately 8-12 hours before test Your
Multivitamins never recommended on here
Exactly what are you currently taking
Suggest you retest after Christmas including thyroid and vitamin levels
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Hi thanks for the reply. I took all thyroid medications 24 hrs before testing so no T3 later in the day either, i tested at 8am and had nothing to eat or drink beforehand. I had stopped all other supplements the week before. Currently taking, multivitamin, omega 3 NAD (for energy) magnesium at night HRT and omeprazole for gastric symptoms. I will retest after the NY and also try GF diet after testing again.
So, your TSH is low because you are taking T3. That's what T3 does, it suppresses the TSH. Never let your doctor reduce your dose based on the TSH alone. That is 100% wrong, so just refuse to lower your dose. Your treatment is supposed to be by mutuam consent, not the doctor dictating to you! He is there to advise you, but you are not obliged to follow his advice.
TSH Is a very bad and unreliable indicator of thyroid status - especially when it get under 1. And it will obviously be under 1 when taking T3. But the TSH cannot tell you what your FT3 and FT4 levels are, just that the pituitary is satisfied with the amount of hormone in the blood. However, the pituitary is somewhat biased, because when there is hormone available, the pituitary gets served first. Therefore it can be satisfied whilst the rest of the cells are still under-medicated. And, if I can know that, why can't your GP?
That said, given your dose of T3, your FT3 is very low.
FT3: 4.4 pmol/l (Range 3 - 6.8) 36.84%
Only 36.84% through the range! So, a couple of questions, if you don't mind:
- How do you take your T3? All in one go? Split? On an empty stomach and well away from food/other medications and supplements?
- How do you do your blood tests? Early morning - before 9 am - and fasting? 8 to 12 hours between the last dose of T3 and the blood draw - 24 hours for levo?
Multi-vits are not recommended on here for all sorts of reasons, the two main ones being that they usually contain iodine, which is not recommended for hypos. And, if they contain iron, that will block the absorption of most of the other ingredients. Apart from that, they don't contain enough of anything to treat a deficiency and they are usually the cheap and badly absorbed form of the nutrients. Far better to get your nutrients tested and just take what you need. Plus their co-factors, of course.
Hi thanks for your reply. I split my T3 into 2 doses 1x20 & 1 x 1/2 ie 10mcg. Did do blood tests early 8am with a 24hr gap between test and last dose of both. Generally on an empty stomach but perhaps sometimes with other supplements. I did'nt realise this was not recommended so I'll avoid doing that infuture. and I'll dump the multivits, did'nt know about the iodine link, I do tend to use wholefood ones but they could still have it?
OK, so that explains why your FT3 is so low - the gap was too long. It's recommended to leave a gap of just 8 to 12 hours. So, that test is useless as far as the FT3 goes.
A wholefood multi-vit is still just a multi-vit with all the same things wrong with it. And when you think about it, it's a pretty stupid idea to try and cram all those nutrients into one little pill. So many reasons why it's bad and just a waste of money with or without iodine. They are not conceived for people with nutritional deficiencies but for the 'worried well' - i.e. people who want to feel they're doing the best they can for their health but without doing anything.
Leave at least 2 hours between taking thyroid hormones and taking vitamins/medication - four hours for iron, calcium, vit D, magnesium, oestrogen.
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