I was diagnosed with an underactive thyorid in 2008. After being on levothyroxine for years, I paid to see a private endocrinologist and switched to Erfa (NDT) in Feb 2016. Had last load of blood tests in May and was feeling pretty good, taking 120 mg of Erfa a day. Now am due for a six-month check-up and starting to feel rubbish again (tired, cold, achey, really noticed it over last two months). See results below:
TSH: 0.8 (0.27-4.20)
Free Thyroxine: 8.94* (12-22)
Total Thyroxine: 49* (59-154)
Free T3: 5.11 (3.1-6.8)
Thyroid Antibodies: 188* (0-115)
B12 - 212* (25-165)
Folate: 7.44 (2.91-50)
Vit D: 54 (50 - 200)
Ferritin: 50 (13-150)
These were my results in May 2017 (when I was feeling pretty fabulous)
TSH - 0.189 (0.27 - 4.20)
Free Thyroxine: 11.1 (12.00 - 22)
Total Thyroxine (T4): 61.5 (59-154)
Free T3: 4.55 (3.10 - 6.80)
Thyorid Antibodies: 196 (0-115)
Vit B12 - 1083 (140-724)
Folate: 16.53
Vit D: 84.63 (50-200)
Ferritin: 208 (13-150)
After the May results, I stopped taking the ferrous sulphate supplements (because I'd been on them for 18 months) and my ferritin levels seem to have now plummeted (from 23 in August 15 to 42 in Feb 2016, 57 in Oct 2016, 112 in April 17 and then 208 (i'd doubled dose!) and now 50. Main reason for going down endo route was thinning hair and it had definitely got thicker. Now worried it's going to start shedding again. I do take Vit D and b12 (a bit sporadically); had figured that I was out in sunshine a lot over the summer. My diet is good and I'm very active (three small children and a job), but at the moment at the end of the day, as soon as I sit down, it literally feels like I've been drugged/am almost slurring with tiredness. Please help! I really want to go armed with a plan on Thursday.
Really, if it isn't the erfa that makes the difference should I switch back to the Levothyroxine - it's free and easily available. Is it that my body is just rubbish at absorbing vits and minerals? I've got a full house at Christmas and a busy time ahead and the thought of doing it all while feeling like I'm knee-deep in custard is really stressful.
Do let me know if you need to know anything else.
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Annie8ell
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Maybe increase supplements and find the right maintenance doses before changing thyroid meds. It looks like problems absorbing nutrients from food. Have you gone gluten free or looked into probiotics to help maintain good gut bacteria levels? Stomach ph and bacteria levels need to be normalised to absorb nutrients from food.
Yes, this is dawning on me! I think I was in denial as up until the start of this year, I'd just been blindly taking my levo for almost 10 years (with thinning hair and feeling a little bit rubbish!)
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's
With Hashimoto's, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.
Obviously your ferritin and vitamin D are now too low and need attention. Vitamin D benefits from also taking vitamin K2 and magnesium as cofactors
Better You vitamin D mouth spray, you can now get with vitamin K2 included
Folate also on low side. Do you take good quality vitamin B complex as well as B12
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Are you on gluten free diet? If not then trying a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
I'm on Erfa too. From my own experience, I would recommend that you take Vitamin D3, B12, Zinc, Selenium is a must too.
Iron looks like it is verging on the low side. My Doctor swears it needs to be above 70 to allow the thyroid meds to reach the thyroid gland. So maybe consider supplementing again? I've found Lamberts Iron the best for me.
Gluten free is non negotiable as well I'm afraid with your antibodies going up again.
SlowDragon's advice is really good.
I sympathise with the hair loss and juggling kids and work. I have a 2 year old Son and he is constantly on the go and very tiring. I love him to bits though & he's so worth the effort!
That's a really helpful list! I'd heard the 70 figure too - and was on iron tablets for a good 18 months. My levels plummet as soon as I stop taking them and not sure if it's safe to be on them forever? Have been resisting gluten-free avenue but will give it a go! Yes, I have a two-year old too, he's a terror.
All of the following are too low and you need to supplement. B12 in particular which should be nearer 1,000:-
B12 - 212* (25-165)
Folate: 7.44 (2.91-50)
Vit D: 54 (50 - 200)
Ferritin: 50 (13-150)
Usually if we've been stable for a while on NDT and then some symptoms begin to appear, you can increase your dose by 1/4 every two weeks to see if that helps your symptoms. You need, however, vitamins/minerals to be optimal. I shall add in SeasideSusie who may be able to suggest how best to increase the deficiencies.
Ferritin and B12 are now poor and awful. That's probably the problem, Vit D has also dropped a lot. Your May results were much better. I'd try to sort those out as your thyroid results are OK for someone on NDT.
I think you've probably realised from all the replies that it's most likely to be your vitamin/mineral levels that are a problem. You felt good in May, your nutrient levels were a lot higher, although Vit D could have been a bit higher - the Vit D Council recommends 100-150nmol/L. We don't all make enough natural Vit D from the sun.
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Vit B12 - 1083 (140-724) - This is serum B12 - you should aim to keep around the 1000 level.
B12 - 212* (25-165) - This is Active B12 - I'm not so good with Active B12 but you are over range. You might want to reduce your supplement a bit. When I go over 1000 with serum B12 I just drop the supplement from 7 days to 5 days a week.
Ferritin needs to be at least 70 for thyroid hormone to work, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
If you felt good in May on Erfa with decent nutrient levels, it may be an idea to stick to your supplement routine, make sure you take them regularly, and get those levels back up and see how you go.
Thanks Susie - quick question: I currently take my Erfa in two separate doses (60 mg in morning before breakfast and 60 just before bed.) Is there any reason for this? Would be a lot easier to get all the other supplements in if I took 120 in the morning like I used to do with levo.
I don't take NDT but it's often said to take it in separate doses, although I believe some people do take it all at once. The reason for separate doses is that the T3 in NDT T3 peaks 2-6 hours after taking it, then level falls. So taking it in separate doses spreads the effects of T3 over the day.
I take T3 in addition to my Levo. I tried it separate doses and one single dose. For me there was no difference, so for ease of taking other supplements and eating/drinking, I stick to one early morning dose.
You could experiment, try one dose and see if it works for you. If not, no harm done, just go back to separate doses.
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