Hello all. Having lurked here for the best part of a month and learned tons of informative stuff, I’m posting to ask for some specific advice.
I was diagnosed as hypothyroid five weeks ago, after a couple of months of feeling terrible – exhausted, nauseous, aching, generally ill. After lots of investigations for other things (all fine), a blood test showed up a TSH of 9 and T4 of 11 (ref range 12-24). My GP immediately put me on 100mcg of Levothyroxine (no building up with smaller doses – don’t know why: she said she did it by weight, but my BMI is 22 - I’m not overweight!) and after about two weeks I felt quite a lot better.
At that point, on the recommendation of this board, I did an at-home blood test, which showed a TSH of 1.52 and T4 of 17.9 (ref 12-22), so back to normal(ish). It also turns out I have Hashimotos (thyroglobulin was at 324 IU/mL and TPA at 215 IU/mL). Plus, my Vitamin D was on the floor (at 30nmol/L) so I’ve started ten weeks of a 2000IU daily dose.
Two weeks on from that, however, I’m starting to feel terrible again. The nausea has gone, which is a big relief, but I’m SO tired again. It’s a good job I’m still working from home because I have to lie down every day at about 2pm. I fall asleep on the sofa at the drop of a hat. I’m too tired to exercise. I don’t feel ill so much as utterly done in.
My question is: could I have tipped over into hyperthyroidism on that 100mcg dose (though I don’t have any of the other symptoms)? Or are these fluctuations just part of Hashis? Or am I not on enough Levothyroxine? I realise a month of treatment isn’t long for this, but I don’t understand why I felt better, only to then feel rubbish again.
Other results: Folate serum 4.29 ug/L; vit B12 74.8 pmol/L; Ferritin 50.7 ug/L
Thanks so much for reading!
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Oreo11
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A guide can be 1.6mcg of levo per 1kg of body weight. Does that sound accurate? That however is just a guide, you may still need adjustments.
Testing after 2 weeks is far too soon. You need at least 6 weeks to see how a level settles it’s still adjusting to new levels at that stage. When was that test?
It common for doses to initially top up level - but ultimately they replace a failing thyroid. My guess would be you need a further increase now, not a decrease.
Without retesting you can’t be absolutely certain if over or under medicated, so I suggest you retest again. Has it been 6 weeks since last test?
Was FT3 tested? you need to know how well your Levo is converting to the active hormone.
I’m not sure 2000iu will be sufficient to treat deficiency. Hopefully someone more knowledgeable can help.
my Vitamin D was on the floor (at 30nmol/L) so I’ve started ten weeks of a 2000IU daily dose.
Is this prescribed or are you self supplementing? It's not really enough.
Loading doses should total 300,000iu over 6 weeks and then retest. Or you could just take 5,000iu daily and retest after 3 months.
Are you also taking D3's important cofactors - magnesium and Vit K2-MK7. If you've been reading the forum you may have come across some of my posts about Vit D, if not I can give you full details.
Folate serum 4.29 ug/L
This is low. With a private test presumably the range is 3.89-19.45. Folate is recommended to be at least half way through range so about 12 plus with that range, if it just says >3.89 then we suggest aiming for double figures.
vit B12 74.8 pmol/L
Below 70 for Active B12 suggests testing for B12 deficiency.
We suggest aiming for 100 plus and supplementing to achieve that is recommended.
It may be beneficial for you to supplement with a good quality, bioavailable B Compex to raise both B12 and Folate.
I have used Thorne Basic B for a long time and always been happy.
If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.
When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).
Ferritin 50.7 ug/L
Presumably the range is 13-150.
Ferritin is recommended to be half way through range so around 82 with that range.
Was CRP tested - if so what was the result. If CRP is raised this will be due to inflammation and in that case, because ferritin rises with inflammation, then you may or may not have a true ferritin result.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.
immediately put me on 100mcg of Levothyroxine (no building up with smaller doses – don’t know why: she said she did it by weight, but my BMI is 22 - I’m not overweight!) and after about two weeks I felt quite a lot better.
At that point, on the recommendation of this board, I did an at-home blood test, which showed a TSH of 1.52 and T4 of 17.9 (ref 12-22), so back to normal(ish).
Two weeks on from that, however, I’m starting to feel terrible again. The nausea has gone, which is a big relief, but I’m SO tired again. It’s a good job I’m still working from home because I have to lie down every day at about 2pm. I fall asleep on the sofa at the drop of a hat. I’m too tired to exercise. I don’t feel ill so much as utterly done in.
Testing two weeks after starting your Levo was far too soon, it should be 6 weeks as it takes that long for the full effects of Levo and levels to stabilise. Then after the 6 weeks you increase your dose if your results/symptoms suggest this is needed.
My question is: could I have tipped over into hyperthyroidism on that 100mcg dose (though I don’t have any of the other symptoms)?
No. You have hypothyroidism so it's a physical impossibility to become hypERthyroid, although it is possible to be overmedicated, in which case your TSH would be very low/suppressed and FT4/FT3 over range.
Or are these fluctuations just part of Hashis?
Can be but I think it's just too early at the moment and you haven't yet found your optimal dose, you're still building up to it.
Or am I not on enough Levothyroxine?
Possibly, it's a long journey requiring lots of patience and can take months to find your optimal dose.
I realise a month of treatment isn’t long for this, but I don’t understand why I felt better, only to then feel rubbish again.
Par for the course when starting Levo, just means you are ready for an increase.
So, retesting should be 6 weeks after starting Levo, increase dose, retest again 6-8 weeks later, increase dose if necessary, repeat until levels are where you need them to be to feel well.
Optimising your nutrient levels will help, they need to be optimal for thyroid hormone to work properly, particularly ferritin needs to be over 70 and some experts say the optimal level for thyroid function is 90-110ug/L.
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 4,900iu per day and the nearest you can buy is 5,000iu.
Retest after 3 months.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit 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 such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Vitabay and Vegavero are either tablets or capsules.
Vitabay does do an oil based liquid.
Vitamaze is an oil based liquid.
With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.
They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form
Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.
So supplements needed are
B Complex - suggestion - Thorne Basic B
Vit D3 - suggestion - Doctor's Best softgels
Vit K2-MK7 - suggestion - Vitabay, Vegavero or Vitamaze
or if combined D3/K2 then look at Nature Provides
Magnesium - you need to see which form will suit you
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Ferritin isn't raised due to inflammation so will be a fairly accurate result, consider raising through diet not supplements unless an iron panel is carried out and you're found to be iron deficient.
Cheers for replying. Am currently taking Levothyroxine first thing, with an hour before eating/drinking anything except water. I didn't know about the gap between that and Vit D, though - I've been taking the latter whenever I remember, and certainly sometimes within four hours. Will start taking in the afternoon now. Thank you.
The 2000 iu is not the best route to fix the vitamin d deficiency. I am not telling you to do this - but I was told to do 10 000 iu/day for one month & then 5000 iu/day for the next two months. And then retest. Retesting is important due to the effects of over-supplementation on the heart & kidneys. So this is for a short period only.
This took me from 19 nmol/L to 73 nmol/L in three months time. And made a tremendous difference in symptoms.
Just to quickly add to this, last year I also had a very low vit d level and my gp put me on 20,000 IUs twice weekly for 7 weeks. They also retested my calcium levels after two weeks on this dose as I think calcium can sky rocket in some people, so may be worth going to your gp and asking for a prescribed course of vit d and a calcium blood test too
I hear you on the 2pm naps! Amazing advice above, I’ve followed a similar path and advice would be, rest when tired, properly rest. Look at diet too along with nutrition, read up. I’ve followed Izabella Wentz Hashimoto’s protocol and the gluten dairy soy alcohol and sugar elimination has been transformative. Read up and see what works best for you 🦋💚🦋
Thank you. I've been looking at her second book with the 90 day plan, but it feels like a big lifestyle change. Not sure I can give up dairy! I'm going to see how I feel with a gradual introduction of supplements, and then give up gluten if I still feel lousy. On a steep learning curve here.
Hello. Just wanted to say that I'm on exactly the same trajectory as you - was messaging on here only a few weeks ago, determined to get some help with my results and improve my day-to-day life! I felt the same as you about going gluten- and dairy-free, I bought the 90-Day Hashimoto's Protocol book and felt entirely overwhelmed by that plus all the advice I got about supplements here...but a few weeks on and I already feel so much better. I have started taking a number of supplements, really taking care to take them at the right times / intervals, and have slowly slowly started the liver protocol from the book. If it's true that gut issues are central to hypo, then really I didn't see how I could not change my diet as I figured I'd just be pumping meds and supplements into a struggling gut. It has been a struggle! But more and more days now I am opting for vegan and gluten-free foods because it just feels better. Going slowly slowly has worked for me, and really tuning into what makes me feel good and what makes me feel crap has been enlightening. Huge best wishes for you on your journey - may we both reach a point where we are not longing for a nap at 4pm every day!!
Thanks, and huge best wishes back! I think you're right - trying to tackle the problem from all angles, and in a way that feels healthier than just gulping down the meds, is the way to go. I do feel better for the vit D and the Levo - and have just started on the Thorne Basic B - but I know I can feel much better still. Have ordered Living Gluten-Free for Dummies, which feels about my level, and will carry on reading, reading. Let me know how you get on!
Yep, I echo this feeling overwhelmed by the changes suggested. I do feel better though and can now understand and explain symptoms as they arise by being more aware of my triggers. It’s a long old journey so totally with you on pacing yourself and finding what works. Wishing you well 🦋💚🦋
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Diagnosed with Hashimotos 
Newly diagnosed with Hashimoto's. Advice on levo dosage appreciated.
Diagnosed with Hashimoto's and struggling
Hypothyroidism - Newly diagnosed.
