I took a test with Thriva and am I'm a bit puzzled because my thyroid values and ferritin hardly budged despite being medicated and working on the nutrients.
As of February 2nd, I take 50mcg levo, 5-10mg liquid iron (spatone, 4 hour interval between levo and supplments), 30-40,000iU vit D weekly, eat liver pate daily. I try to go out for short walks no more than 20-30 minutes every other day...
Folate seems normal, but should I supplement this? I still have difficult periods but not half as bad as before, though what's new is that my teeth hurt for a full week... still can't do any work or studying during that week and rely on tranexamic acid. I'm back on my period because I can no longer get the birth control I used to take and don't get on with the progesterone-only and combined pills.
Admittedly, I feel an improvement in mood, IBS symptoms, the feel that I need to eat less to manage a day. Able to tolerate more foods like eggs. I eat red meat 1-3 times every day. But there's more to do until I can say I'm back on my feet...
Besides raising iron, ferritin, vitamin D and levo, what more can I do?
March 8 / January 28 (Thriva) both taken at 8.15AM
TSH 3.28 / 3.4 (0.27-4.2)
FT3 4.8 / 5 (3.1-6.8)
FT4 16.8 / 15.2 (12-22)
T4 105 / 98 (59-154)
Ferritin 31 / 33 (13-150)
Vit D 87 / 41 (75-175)
Active B12 150 / 127 (37.5-188)
New bits not included in January test
TIBC 69 (41-77)
UIBC 55.3 (24.2-70.1)
Iron 13.7 (10-30)
Transferrin saturation 20% (20-55)
Folate 15.8 (8.83-60.8)
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naryshkin
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Hardly surprising....50mcg levothyroxine is only a starter dose
Low vitamin levels are direct result of being under medicated
Vitamin D and B12 are responding to supplements
Ferritin can take many months to improve
You clearly need 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Great, then I'll call my GP and see if she's willing to raise my dose to 75mcg. If not, I'll ask around until they're sick of me 🤡
Does ferritin fluctuate between tests? Or would it be more sensible in biting the bullet and go back on contraception for the sake of raising it? Or maybe it's the walks?
In the meantime, I'll look into raising my liver to 200g weekly (from 70-90g). Food, liquid and soft gel supplements work better than regular tablets.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Being 5 foot nothing, my natural weight was 42-43kg. Ballooned because of the flare but haven’t had the chance to step on a scale at the GP’s and I don’t have a scale at home. Banking on 55-60kg judging the jump from XXS/Xs to Ms in H&M sweatpants and leggings.
Would it be viable to stay on 100mcg until getting the weight down and then proceeding with 75mcg?
I’ve read that weight falls off with improving ferritin levels. Would this impact levo doses?
Don’t be surprised if they have never read the guidelines
Despite levothyroxine being 2nd or 3rd most prescribed medication in U.K. and over 2 million people in U.K. being on levothyroxine.....many GP’s have little idea how to manage a patient on levothyroxine
Levothyroxine doesn’t top up failing thyroid, it replaces it.
Poor gut function with Hashimoto’s 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.
According to Izabella Wentz the Thyroid Pharmacist 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 and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
I have a history of bad gastrointestinal symptoms/IBS, but they're slowly improving with levo and supplements.
Coeliac tests taken in 2014, 15 and 2020 came negative.
Excluded thyroid antibodies as they always came out negative, but we have Hashi in the family. I've read here that some 20% don't have antibodies. Is this confirmed through a biopsy or an ultrasound? My goitre likes to come out around my period and then alternates in size during the rest of the month, depending on how much I've exercised...
Super! I’ll look into this and will make some minor changes to my diet. I don’t eat much gluten bar the morning toast with pate... but there’s always hidden gluten!
I’ve gone gluten free before and weight fell off but then it crept back in conjunction with flares because I wasn’t medicated. Levo helped me in managing some cravings like croissants.
Feeling pretty optimistic. Only upwards and onwards 💫☀️
Folate 15.8 (8.83-60.8)Mid-range is approximately 35
Ferritin 31(13-150) 13% of the way through the range
TIBC 69 (41-77) 78% of the way through the range
UIBC 55.3 (24.2-70.1) 68% of the way through the range
Iron 13.7 (10-30) 18% of the way through the range
Transferrin saturation 20% (20-55) bottom of range
Vitamin D --- Optimal for vitamin D is quoted as being, depending on source, either 100 - 150 nmol/L OR 125 nmol/L. Yours has risen by 46 nmol/L in about 5.5 weeks which is very good. I would suggest you should reduce your dose of vitamin D in about a month, or reduce the number of days a week you take it. You need to find your maintenance dose, and that can take a lot of trial and error.
Active B12 --- Optimal is over 100 pmol/L so yours is already there. If you supplement you could reduce your dose to try and keep it there.
Folate --- Optimal is upper half of the range, which in your case is approx 35 - 60. This is worth reading :
Using the folate supplements mentioned in that link, you could take 1000 mcg per day for a month or two.
Don't push folate above range - too high a level can backfire.
To maintain B vitamins in some kind of balance it is worth while taking a B Complex which contains activated versions of the B vitamins. The two most often mentioned on this forum are :
Thorne Research Basic B - Full dose is one per day
Igennus Super B - Full dose is two per day
Some people prefer the Thorne and stick to it. Others take the Igennus, take two per day for the first bottle then reduce to taking one per day. You are unlikely to need B12 or folate on top of the B Complex once your levels are optimal - but it is trial and error.
...
Iron, ferritin (iron stores) and the other results in an iron panel are complicated.
Iron --- Yours is only 18% of the way through the range and optimal is 55% - 70% of the way through the range i.e. about 21 - 24 (lower end of that for women, higher end of that for men). This suggests your iron is too low.
TIBC --- Yours is quite high in range suggesting that your iron is too low and you need more.
UIBC --- I never know what to say about this.
Transferrin Saturation --- Optimal is 35% - 45%. Yours is substantially too low, suggesting you need more iron.
Ferritin --- Optimal is suggested on the forum to be mid-range or a little bit higher. Yours is low in range suggesting you need more iron.
Iron is poisonous in overdose and going over-optimal should always be avoided, so supplementing must always be done cautiously with regular re-testing. All of your iron-related results currently suggest you need more iron. Please read the following link before supplementing :
As of February 2nd, I take [...] 5-10mg liquid iron (spatone, 4 hour interval between levo and supplments).
Just for comparison...
I was severely low in iron a few years ago and was prescribed iron supplements by my doctor. She prescribed ferrous fumarate 210mg, 1 tablet to be taken 3 times per day. Each tablet contained 69 mg pure iron, so I was taking a total of 207mg of iron per day.
Spatone sachets contain 5 mg of iron per sachet. Some people claim to absorb more iron from Spatone than from anything else, but it seems to me that you probably aren't one of them. You really need to try out some supplements with higher doses of iron. There are a lot of choices.
See this reply I wrote for another member on the subject of iron supplementing :
Anyone with a tendency to have low iron will probably need to take a maintenance dose of iron to keep their levels optimal (once they reach it). It can take a lot of trial and error to find your correct maintenance dose, but it is worth it.
Be aware that any change in eating habits can affect your iron levels. I struggled to raise my ferritin and other iron-related levels for 18 months. I went gluten-free and three months later my ferritin level was optimal. My serum iron and other levels were still showing evidence of low iron, but I prefer always to be optimal or lower with iron, rather than optimal or higher.
Thank you so much for your insight, it's very comprehensive and have taken the time to read the links and your posts thoroughly. I'll raise my iron intake until I'm being seen properly (still within what's recommended) . My main gripe is that tablets trigger my IBS and my tum seems happier with the liquid formula, but it could be a case of trial and error or just a matter of getting used to. I had no idea about gluten and iron absorption, will definitely give that a go and see what happens. Hope you're having a lovely Saturday 😊☀️
I had this problem as well - I was told that I should take iron on an empty stomach, but I couldn't tolerate it that way. I ended up having to take iron supplements with my meals, it was the only way I could take them at all. It must have slowed down my absorption of the iron, but I did manage to raise my levels eventually - it just took a long time.
Getting the final boost for my ferritin from giving up gluten was unexpected. I'd been told I wasn't coeliac several years before (I'd had thorough testing) and had assumed that giving up gluten was pointless. But when I finally decided to experiment with giving up gluten it helped me in several ways and I've never regretted it.
The higher the iron content of an iron supplement the fewer people generally tend to tolerate it - but there are lots of choices, so don't restrict yourself to trying just one. You need iron - you just need to work out how to get it into you.
Thank you all for your input SlowDragon , humanbean and Hidden . This is super helpful!!! Really can't stress that enough! 😻🦄🌻
I spoke with my GP on Friday and I have both good and bad news. The good is that she's receptive to the recommendations from Slow Dragon's links, and that she'll take me in for a full blood profile on Wednesday at 9.30. That'll cover everything from bones, full iron and thyroid to liver and kidneys.
The lesser good is that she's unwilling to raise my dose to 75mcg because of the iron and ferritin, so she's reached out to an endo consultant at a nearby hospital who'll assess my overall profile. So I'd have to wait another 2-3 weeks until I find out about next steps. Though head of the practice, she at least admitted she doesn't know much about thyroids and deficiencies which is why she consulted with her colleagues and stepping out of the practice for advice.
So I think I'll be doing what everyone here seems to be doing: go private and return to the NHS once we've found a maintenance dose once iron/ferritin are properly sorted.
Thank you all again and have a lovely Saturday! May the sun shine wherever you are ☀️🌻
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"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)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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