Don't think levothyroxine is working out for me... - Thyroid UK

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Don't think levothyroxine is working out for me - feel dreadful every day now. Can anyone advise on results? (sorry to be asking again)

msmono profile image
14 Replies

As some will know I got diagnosed hashi in June (after years of feeling 'under par') I had test results last week which suggested being over medicated. Vitamin results were low/normal so I upped everything. But I just feel like I've got flu every day (for 5 weeks now) the same as I felt pre-diagnosis but actually worse as I feel too ill to go to work whereas I previously was able to struggle in. I reduced my levo from 100 to 75 in case I was over-medicated but actually feel much worse this last week. Any, any suggestions as to what I can try would be so gratefully received.

Most recent results photo attached (was on 100 mcg Levothryoxine)

Vitamins etc that I could afford to have done

Iron 41.4 range 13-150

B12 60.7 range 37.5-188 (this hasn't gone up since since taking supplements for two months)

Vit D 64.1 50-176

(I am gluten-free which has improved morning upset stomach)

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14 Replies
JumpJiving profile image
JumpJiving

Your FT3 looks pretty good. If you want to keep it at that level whilst reducing your FT4, you could replace some or all of your levothyroxine by NDT, or reduce the levothyroxine and add some T3 if you can get hold of it.

If you are not already, you might want to consider taking magnesium to help with absorption of vitamins. I would want to see higher levels of B12 and D than you currently have. Are you supplementing with D3?

Are you supplementing with iron? If so, are you taking it 4 hours apart from levothyroxine?

msmono profile image
msmono in reply to JumpJiving

Hi, thanks so much for getting back to me. :) Re vitamins I'm using a 'better you' D spray recommended on here - I should check it is D3. Yes I'm leaving 4 hours after levo for iron. I have a friend who has some T3 I could trial but I wasn't sure if this would be the right fix as my T3 looks good-still learning. I'm surprised my results look so good but I feel really rough and they are very much hypo symptoms. I was taking magnesium but a bit scattergun as still getting used to all the things I now have to take.

SeasideSusie profile image
SeasideSusieRemembering

msmono

Did you put your vitamin results on the forum for comment and if so did you get any suggestions for supplementing? I can't see a post with them. Did you have the Medichecks ULTRAVIT test?

What are you supplementing with?

With that Active B12 result, if you'd posted it on the forum, you would have been advised that a level below 70 should be referred for testing for B12 deficiency and given a link to check for signs of B12 deficiency, also you'd have been advised not to supplement B12 or B Complex until further testing had been carried out.

What was your folate result? B12 and folate work together.

How much Vit D are you taking and are you taking it's important cofactors magnesium and Vit K2?

What are you doing about the low ferritin?

These low nutrient levels could be contributing to Levo not working properly.

Also, because you have Hashi's then your levels and symptoms will fluctuate with the Hashi's activity.

Those results don't show you're overmedicated, your FT3 would need to be over range for that. Your TSH is low because you're taking Levo and your pituitary is aware of this so doesn't need to send a signal to the thyroid to make any hormone so TSH stays low. Your FT4 is one point over range and it may be that is where you need it to make a decent amount of FT3. But if you wanted to get your FT4 back into range then a reduction of 12.5mcg Levo rather than 25mcg would have been adequate.

msmono profile image
msmono in reply to SeasideSusie

Hi SeasideSusie, thank you for your post. The vitamin results I've posted above were with Medichecks but not the ultravit - think it was a lifestyle one. Ultravit is next paypay. I did wonder re the B12 but what do I need to do? Is it a case of going to my G.P and requesting further B12 investigation? I'm surprised my results haven't gone up as I've been supplementing regularly. Noted re the K2 I have a spray on order and I have been taking magnesium albeit sporadically. Re - low ferritin I'm taking Asda iron tablets (don't laugh - needed to save some money somewhere) Can you suggest a good one I could use? Folate- I stopped taking it because it was above normal last time I had a test - didn't get it tested this time as I assumed I didn't need it as I eat LOTS of green stuff)

SeasideSusie profile image
SeasideSusieRemembering in reply to msmono

If you always post your results on the forum then someone will give you suggestions of what to do.

This is the information always given when Active B12 is below 70:

"For results below 70 it's suggested to test for B12 deficiency according to Viapath at St Thomas' Hospital, see:

viapath.co.uk/our-tests/act...

"Reference range: >70*; * between 25-70 referred for MMA"

Check here for signs of B12 deficiency:

b12deficiency.info/signs-an...

If you have any then list them to discuss with your GP when asking for further testing for B12 deficiency.

Do not supplement with B12 or B Complex or Folic Acid/Folate before further testing as this will mask signs of B12 deficiency and skew results."

**

How much D3 are you taking? You base dose on your result and what the Vit D Council recommend to reach their recommended level of 125nmol/L (Vit D Society recommend 100-150nmol/L). I can check to see if you are taking the appropriate amount and link to their suggestions for you.

Information about important cofactors needed when taking D3 as recommended by the Vit D Council

vitamindcouncil.org/about-v... :

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 such as hardening of the arteries, kidney stones, etc.

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 tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium 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 if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Check out the other cofactors too (some of which can be obtained from food).

**

Re - low ferritin I'm taking Asda iron tablets (don't laugh - needed to save some money somewhere) Can you suggest a good one I could use?

I don't suggest any iron supplements I'm afraid. Iron is complicated and you need to know if it's just low ferritin or if your serum iron is also low or if there is any indication of iron deficiency anaemia, so iron tablets are not something I will suggest it's OK to use, I'd leave that to a GP.

When it's just low ferritin then my response is always:

It's said that for thyroid hormone to work properly (that's our own as well as replacement hormone) ferritin needs to be at least 70, 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, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

I originally raised my ferritin from about 39 to eventually 119 just by eating liver once a week.

If you wish to continue with your iron tablets then take each tablet with 1000mg Vit C to aid absorption and help prevent constipation. Keep a check on your levels whilst taking iron tablets, I'd say retest regularly every 3 months. I buy Medichecks Iron Deficiency Test either when it's on offer at £29 (instead of £39) or with 10% discount code THYROIDUK if it's not on offer. It tests the full iron panel plus CRP-hs (inflammation marker).

If you continue with your iron tablets then take them 4 hours away from your thyroid meds and 2 hours away from any other supplements or medication as absorption will be affected.

msmono profile image
msmono in reply to SeasideSusie

Really helpful thanks. I'm using one spray a day of 'BetterYou Dlux 3000 Vitamin D Oral Spray'. I think what I also need to do is write down a medication daily regime to make sure I'm getting maximum benefit of everything. (I also take hrt and am aware of oestrogen interaction with Levo - but it doesn't seem to have been a problem according to my results)

SeasideSusie profile image
SeasideSusieRemembering in reply to msmono

Vit D 64.1nmol/L = 25.64ng/ml

To reach the recommended level from your current level (100-150nmol/L or 40-60ng/ml)), based on the Vit D Council's suggestions you could supplement with 3,700iu D3 daily

vitamindcouncil.org/i-teste...

3,700iu over 7 days = 25,900iu

Your supplement is 1 x spray = 3,000iu which over 7 days is 21,000iu.

If I were you I'd double the dose 2 days a week (maybe Saturday and Sunday to make it easy) which would then give 27,000iu.

Retest after 3 months.

When you've reached the recommended level then you'll need a maintenance dose 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. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

When I first started taking supplements I made a spreadsheet detailing each supplement and when I should take them, then I'd tick them off as I took them.

As Shaws has reiterated, you should have further testing of your B12 to rule out (or in) pernicious anaemia.

msmono profile image
msmono in reply to SeasideSusie

That's really helpful thanks. There's no way I'd have worked out the dosage without your help. And a spreadsheet is a really good idea.

shaws profile image
shawsAdministrator in reply to msmono

If our B12 is low, we should be tested before supplementing to ensure that it is not caused by Pernicious Anaemia - another autoimmune condition and most important that patient has B12 injections regularly.

Perncious anaemia is a serious condition if untreated. Low B12 isn't the same as Pernicious Anaemia.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

msmono profile image
msmono in reply to shaws

Hi and thanks for your reply. We think my nan had that actually and they think her dementia may have been caused by it as it got diagnosed very late. I guess I'll have to explore further - just can't face the G.P. battle right now.

shaws profile image
shawsAdministrator in reply to msmono

There are also private labs that do home finger pin-prick blood tests. If you decide to do so occasionally, make sure you are well hydrated a couple of days before and that hands/arms are warm. I shall give you a link - just in case. If you are squeemish about drawing your own blood, some private labs can make arrangements.

thyroiduk.org.uk/tuk/testin...

msmono profile image
msmono in reply to shaws

That's great, thank you. I'm good with the lancet-finger draw but wouldn't fancy trying a venous on myself - although I see lots of people are doing their own B12 injections!

MissGrace profile image
MissGrace

Maybe a 25mcg drop was too much? You could try alternating 100mcg/75mcg perhaps? 🤸🏿‍♀️🥛

msmono profile image
msmono in reply to MissGrace

Hi thanks, that's worth considering, I dropped it because I felt ill. I felt ill on 50 (after a whole initial month where I felt great), so the endo out it up to 100 and I felt better for about a week then ill again. I do feel that maybe I need to be on about 80 - that would be right for my weight so your idea might work but I have a feeling it's not only that going on. So complicated isn't it? Thanks again

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