Hi, I am new to the forum. Am in U.K and received these results via medichecks advanced thyroid check. Currently on 125mcg Levothyroxine. G.P wants me to take 150mcg one day then 125mcg alternate days.
Any advice welcome please.
I am vitamin D deficient to start taking vitamin D and on folic acid.
Much, much too high for someone on thyroid hormone replacement. Should come down to 1 or under.
What time of day was the blood draw for this test?
Free T3 3.7 pmol/L (Range: 3.1 - 6.8)
Much, much too low, only 13.51% through the range when it should be at least over mid-range, probably higher.
Free Thyroxine 16.8 pmol/L (Range: 12 - 22)
Too low. Only 48.00% through the range. Should probably be around 75% through the range. That's just a guess, of course, because we're all different. But I've never heard of anyone being well on that low an FT4.
I think your doctor is being over-conservative with his piddling little increase in dose. It should be at least 25 mcg to get your levels anywhere near high enough.
And you're probably a poor converter but impossible to tell when the TSH is so high and the FT4 so low.
So, you have Hashi's - aka Autoimmune Thyroiditis - did you know that?
Did you get your nutrients tested, as well? Vit D, vit B12, folate and ferritin?
I am vitamin D deficient to start taking vitamin D and on folic acid.
When taking vit d, you also need to take its cofactors: magnesium and vit K2-MK7.
Folic acid is not a good form of folate to take. Methylfolate is better. And, the Bs all work together and need to be kept balanced. So, you'd probably be better of taking a B complex containing at least 400 mcg methylfolate. Thorne Basic B is a good one.
Hi thanks so much for replying. Been on 125mcg since May 2022 . I have been feeling absolutely awful. Pain in my body is bad and exhausted. G.p didn’t say anything about vitamin k. It is only today after 13 years that hashimotos autoimmune was said to me. Also referring me to dietician and mentioned gluten free diet.
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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
A gluten-free diet is sometimes helpful for people who are gluten-sensitive, as Hashi's people often are. But it won't help your thyroid or Hashi's in any way. I can't imagine a dietician will help you, either, given my experience of dieticians! lol
I doubt your GP knows about vit K2 and vit D. They know next to nothing about nutrition because they don't do it in med school.
You're feeling awful because your FT3 is so low. T3 is the active hormone and is needed by every single cell in your body to function correctly. Low T3 therefore causes all sorts of symptoms. But so do nutritional deficiencies - which hypos often have due to low stomach acid. See if you can get your zinc tested. That could be low and that will cause a lot of pain.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I’m on my 4th week of folic acid. I don’t know what my levels were at. Levothyroxine brand at the moment is 100mcg aristo levothyroxine and the 25mcg ones are wockhardt and the other 100mcg they have given me are accord brand
So, your ferritin looks high. But it could be a false high if you have inflammation. Did you have any inflammation markers tested at the same time, such as CRP?
OK, so you have a false 'high' FT4 there. So, I really do think your increase should be the full 25 mcg every day. If your doctor continues to increase in half-doses like that, it's going to take forever to get your Frees up to a decent level.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
hey Jammypiece welcome to this helpful place! I’ve learned so much from the forum 🙏
I’ve little to add to what been said, but it was suggested you may be a poor convertor. My results for T3&4 were v similar to yours last august. And I was and actually still feeling rough and exhausted even tho my basic levels are great now! If you’re a poor convertor I’m not sure that just keeping upping your T4 will change things. You can get a genetic test via Blue Horizon (not cheap but often a discount available thru a thyroid Uk) which would clarify and then potentially you can ask for some T3 to be prescribed tho I understand this isn’t easy to achieve from what others have said. I went private to get my NDT so that’s also an option. Good luck 💜
One thing that strikes me right off is that, even though your Free Thyroxine is right in the middle of its normal range, your Free T3 is near the bottom of its normal range and might be triggering your high TSH. Since you're already taking 125 mcg of Levothyroxine (T4), it looks as though you're having a significant problem converting from T4 to T3.
A low Free T3 can be a sign of any of a variety of problems, including non-thyroidal ones. Since conversion of T4 to T3 occurs mainly in the liver and kidneys, it could mean problems there. But other kinds of systemic illnesses could be playing into this. I'd recommend that you ask your GP to look into these other possibilities. Of course, T3 supplementation seems to be the most obvious consideration.
Just wanted to thank everyone who replied to Jammypiece , I learnt so much and it wasn't my question! I'm always so impressed by how much some of you know. Thank you.
I noticed somewhere that magnesium should be taken 4 hours away from thyroid medication. I usually take magnesium about 10 and then my final T3 dose at 11, so this is too close presumably. Taking T3 at night seems to have helped my sleep though i still wake at 4 (often the only time of the day Ifeel too warm) . I also wondered whether there are other combinations to avoid, I read once that B complex and Vitamin C shouldn't be taken at the same time, so i stopped and then realise i kept forgetting Vitamin C- maybe not a good idea for someone who still isn't right after covid at christmas. And years ago i read that zinc should be taken alone. Is that correct, it is hard to not be pill neurotic , spacing them through the day!
`finally , thanks for all the useful gluten links. I'm reading them all, , but wonder if you were going to read just one book on Hashimoto , which would it be. Thank you
It's not being pill neurotic, it is looking after your health - you are worth it . Its why I use a dosette box - makes it easy to keep them all apart, and you can always disappear into the bathroom if you are worried about people thinking you are a pill popper. If you had a rough time with covid, it's doubly important to keep your immune system in good repair . Right, I'll hop off my soap box now...
Given that your b12 is low in the range it might be prudent to pause on folate until your b12 status is either cleared as OK or you are treated for b12 deficiency. This is because folate can exacerbate neurological b12 deficiency symptoms and additionally reduce other symptoms such as mean cell volume. Sorry it's complex but there is much more on the Pernicious Anaemia Web site or health unlocked forum which will give explain the issues much better than I can.
You can Google b12 deficiency symptoms- such as here - B12d.org. Unfortunately there are no reliable b12 deficiency tests - they only give a positive result in 50% of cases. So symptoms are probably the best diagnostic which can, in some cases, be confirmed by an antibody test.
I hope this is helpful.
Unfortunately your GP may, as with your thyroid, be unfamiliar with these details.
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