still feeling rubbish, any ideas please? - Thyroid UK

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still feeling rubbish, any ideas please?

Starseed56 profile image
11 Replies

hi lovely forum friends. I’ve now been on NDT 4 months, all but a few days. My readings from 10 Dec are

TSH. 0.092. (0.27-4.2)

T3. 3.8. (3.1-6.8)

T4. 13.7. (12-22)

after this test I decided after posting here to raise my pm dose to 45mg and I take 60mg (Erfa) early morning.

I’m now taking the Three arrows iron 1 a day because my ferritin was 28. Also taking Vit C, zinc, and selenium, as well as two drops of iodine in a Phial of Quinton’s hypertonic since am pretty sure after all these years that I have adrenal fatigue. I’ve just finished a bottle of B12 (my level in Sept was 469 (189-883) so not too bad I think. My Vit D was 200 so I just take 1 per week it’s a high dose tablet I have at the moment.

My serum iron level was 29.1 (7-26) but the gp said nothing. I deduced after someone kindly informed me I possibly have IDWA iron deficiency without anaemia as one measure or another has been low most of my adult life (often low haemaglobin problems which this time is mid range and has been better, possibly since menopause) but no one has ever had an explanation about this.

Perhaps Im Expecting miracles after 22 years on thyroxine! I think it worked to start with as I can remember my TSH going right down, (and of course I was a lot younger 😂) then of course I was told to lower the dose, same old garbage advice as I now understand. I am just SO exhausted. Some days all I can do is walk the dog then sit or gently potter round my cottage and it’s very frustrating. I can summon enough energy for a busy day but then have to take a few days of doing nothing to recover. My sleep is also appalling and nothing seems to change that. My homeopath is currently concocting a remedy which may help but to date nothing helps and it’s been worse since I came off pregabilin in March which I don’t regret as it’s a strong med but it must have aided sleep to a degree.

Speaking to the private doctor tomorrow but tbh I don’t find her that helpful, she’s quite focussed on bloods more than how I actually feel. Perhaps I’m just expecting recovery to be quicker, I don’t know!

If this speaks to anyone… I’d really welcome some feedback! Thank you and a better 2024 to all of us in here 💜🤗

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11 Replies
greygoose profile image
greygoose

I’m now taking the Three arrows iron 1 a day because my ferritin was 28. Also taking Vit C, zinc, and selenium, as well as two drops of iodine in a Phial of Quinton’s hypertonic since am pretty sure after all these years that I have adrenal fatigue.

Are you taking the iron, vit C, zinc and selenium all at the same time? Or spaced out through the day? Are you taking them all at least four hours away from your NDT?

Iodine has nothing to do with adrenal fatigue. It won't help that. And, it's highly unlikely that you need extra iodine as you will be getting plenty from your food plus thyroid hormones. 105 mg NDT will give you roughly 50 mcg iodine.

I think you're probably still under-medicated, plus low ferritin, which will make you very fatigued. Perhaps time to raise your dose again?

Starseed56 profile image
Starseed56 in reply togreygoose

Thanks greygoose yes I do take the supplements four hours away from my two NDT doses. I therefore take them altogether or I’d go mad every day trying to further space them out. I also take magnesium at bedtime (again four hours away from NDT)

The Quinton hypertonic is for the adrenal fatigue I just happen to add the iodine to that! Agree with you I probably need to further up my dose I’m aiming for 120mg and am 15mg away from that, I’ll up in another week or so because I’ve found I don’t react well when I’ve increased previous doses and it can cause me palpitations and blood pressure fluctuations, which have settled now thank goodness and are more random and less frequent.

I guess no one can tell me how long before the iron really kicks in…. I’ve been taking it for about 30 days. I tried taking two but my body didn’t cope well as per a previous post, so I reduced to 1 again. I have 9 months supply as I bought three pots of it!

I don’t really understand as I have low ferritin yet my serum iron is over the limit - no comment from GP when that came back! But since ferritin is my store (and low) I’m taking the three arrows for now.

So I don’t really know if it’s the thyroid or the low iron causing the fatigue or both. I have to be patient a while longer … 💜

pennyannie profile image
pennyannie in reply toStarseed56

Hello there :

As I understand things no thyroid hormone replacement works well until ferritin is at least over 70 - so believe it's both thyroid and low iron causing knock on problems.

I now aim to maintain my ferritin at around 100: active B12 75++ ( serum B12 500++ ) folate around 20 and vitamin D at around 100:

I was totally exhausted when my ferritin was at just 22 - and started to feel a little better when I reached mid 40's and then it was slow build up and took me over a year to tip into the 90's.

Starseed56 profile image
Starseed56 in reply topennyannie

Thank you Pennyannie that’s helpful, it seems more patience, more supplements and more time needed then! I’ve been using bio active B12, just finished the bottle but seems to be one of the necessities to feel anything like normal. Last B12 was 429 so maybe I’ll keep on it as you suggest 500+ is optimum. 💜

pennyannie profile image
pennyannie in reply toStarseed56

Yes - I'm afraid the stepping stones to getting thyroid hormone to work well do take time as does increasing NDT levels until you feel more like you.

I self medicate NDT and it helped understand my body better by monitoring myself on blood pressure, pulse and temperature twice daily as I slowly inched up my dose by 1/4 grains weekly - though some recommend increases should be fortnightly :

I found my blood pressure and pulse remained constant but tracked my temperature rise from 35.4 to 36.6 where it seems to hover still today some 6 years later on from first experimenting with NDT.

I switched to NDT once my vitamins and minerals were all optimal and still need to supplement maintenance doses of all four to be as well as I can be.

greygoose profile image
greygoose in reply toStarseed56

I therefore take them altogether or I’d go mad every day trying to further space them out.

I understand. But, the problem is that if you take them all together, you probably won't absorb very much of anything. Because they block each other, and that could be why your ferritin is still low. What I would suggest is taking iron and vit C one day, and zinc and selenium the next, and continue alternating like that. It is said that we absorb iron better if we take it every other day, rather than every day.

That said, if you have high serum iron, it's not a good idea to take iron supplements. It's better to get your iron from food because then it will go into store, rather than into the blood. So, liver and bacon once a week? :) But you still need to take the vit C with it for absorption and to avoid constipation.

Taking iodine when hypo is a very bad idea. As I said, it's highly unlikely that you need it, and excess iodine is a very bad thing to have. As you are taking exogenous thyroid hormone, your thyroid is no-longer making any, so you need less iodine, not more. The tonic sounds good, but if I were you, I'd drop the iodine.

Brightness14 profile image
Brightness14

I replied to you before suggesting that you raise your Erfa. Probably to at least two 60mg per day. Your FT3 is too low causing low FT3 You are still undermedicated you may require 2.5 or even more to feel well.

Starseed56 profile image
Starseed56 in reply toBrightness14

Hi Brightness yes I did up the dose, after your suggestion I added another 15mg a day and when I feel that my body has assimilated that I plan to up it again to 2x60mg and then retest a few weeks after. 💜

Brightness14 profile image
Brightness14 in reply toStarseed56

That sound like a plan taking it slowly until you feel well. Good Luck.

SlowDragon profile image
SlowDragonAdministrator

Your iron levels are high

You therefore can’t take iron supplements to improve low ferritin

Only increase Ferritin by eating iron rich foods

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Definitely stop iodine supplements

As well as daily B12….Are you taking daily vitamin B complex?

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and 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

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

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 currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Starseed56 profile image
Starseed56 in reply toSlowDragon

Thanks Slow Dragon. The doctor actually agreed taking iron would be a good idea 🙄🫣. I think I might ask my GP to send me to a haematologist to try and get my iron levels sorted out.It’s clearly not been right most of my adult life! I’ll read all the links about the supplements, and will try the iron alternate days which is probably better as my serum iron is high. I’ve been veggie for nearly 40: years I began to eat beef a year ago to try and help and because my body seemed to need it, but I couldn’t stomach chicken livers I’m afraid. 🤗💜

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