Feeling dreadful today... Any ideas why? - Thyroid UK

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Feeling dreadful today... Any ideas why?

Kit_Monster profile image
15 Replies

Hi

Having moved from T4 to 1 grain of Armour NDT in July on advice my private Dr, I seem to have had mixed days. These last 2 weeks have been particularly bad and I don't know why.

Test results from last week:

Blood test 7am. Last dose of NDT 24hr before. Biotin supplements stopped 5 days before.

FT3 3.4 pmol/L (range 3.1 - 6.8 pmol/L)

FT4 10.8 pmol/L (range 12 - 22 pmol/L)

TSH 1.21 mu/L (range 0.27 - 4.2 mU/L)

Currently taking various supplements.

Vit D 3000iu (level 57.7 nmol/L as of 02/08/22).

Eating iron rich foods. Tests on 16/08/22 show

Iron 16umil/L (range 5.8 -- 34.5)

TIBC 48.5umol/L (range 45 - 81)

UIBC 32.5umol/L (range 24.2 - 70.1)

Transferrin Saturation 33%

Transferrin 85.3ug/L (range 14-150)

Also taking Folate and B12

Tested Feb 22

Serum Folate 13.9ug/L (range >3.89)

Active B12 150pmol/L (37.5 - 188)

I expected T4 to fall but surprised that T3 is still so low.

I felt great 2 weeks ago and was able to help out with DIY projects and going cycling.

Today I took my NDT as usual (1 hour before breakfast) and then waited 2 hours before my Vit D3. Since taking the NDT I feel awful. Dizzy. Nauseous. Legs like lead. Exhausted. I've had to lie down.

Anyone got any suggestions as to what is going on??

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Kit_Monster
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15 Replies
greygoose profile image
greygoose

1 grain is a tiny dose. And, you are obviously very under-medicated. So, not surprising you feel bad. How much T4 were you taking before?

In the beginning you felt good because of the T3. But the fact that you went on to feel bad again is an indication that your body was asking for an increase in dose. You can increase NDT by 1/4 grain every two weeks.

Might be better to leave a gap of four hours before taking your vit D. That's what is always advised on here. Do you also take its cofactors: magnesium and vit K2-MK7?

Kit_Monster profile image
Kit_Monster in reply to greygoose

Thanks for your response.

I was only on 50mcg of T4 before - my T4 levels went up nicely on that but T3 went down and down. Hence the move to NDT.

I'll change the D3 to 4 hrs after thyroid meds.

I take K2 in the afternoon and then magnesium at bed time.

I'll add in the extra quarter from tomorrow and increase every 2 weeks till I hit the sweet spot.

greygoose profile image
greygoose in reply to Kit_Monster

Well, if you get to two grains, you might like to stop there and hold for six weeks, and retest. Just to see where you are. Whilst you don't want to increase too slowly, you don't want to go too fast, either. ;)

Brightness14 profile image
Brightness14

I think that you should have tested twelve hours and not twenty four hours which may improve your readings. Your FT3 is low and you probably require an increase one grain is a tiny amount. During covid I had to change my NDT and found that Armour was weaker than my usual one. When I started on NDT I increased by 1/4 every 10 days or so,

Kit_Monster profile image
Kit_Monster in reply to Brightness14

Hi Brightness 14, I only take my NDT in the mornings, hence the 24hrs between taking my last dose and test. I've been reading that T3 has a much shorter half life than T4 so a split dose with one in the evenings might help.

I'll start a dose increase tomorrow.

Brightness14 profile image
Brightness14 in reply to Kit_Monster

I have no thyroid and take 2/25 grains split in two. 1.25 grains at 6am, and another one after lunch well away from food. It does take time to get the dose right, good luck.

pennyannie profile image
pennyannie

Hello Kit Monster :

With NDT you dose to the relief of symptoms and just think you should have continued building up your dose from 1 grain in 1/4 grain increments weekly/ fortnightly - and when and if you reach 2 grains - then stay on the 2 grains for 6-8 weeks letting this dose settle in your body and then run a blood test to compare to your bench mark readings.

Some people find they need to split the dose - I don't but it's all trial and error and what suits you best and currently you look under medicated.

When optimum your TSH will likely be low, suppressed, and your T4 may be less than when on T4 monotherapy but your T3 should look proportionately higher.

Kit_Monster profile image
Kit_Monster in reply to pennyannie

Hi pennyannie. Thanks for this really helpful info. I didn't know that I needed to dose incrementally to relief of symptoms / 2 grains and then test.

As you say, it really is a very individual approach. And a spot of trial and error to get things right.

SlowDragon profile image
SlowDragonAdministrator

previous post shows under medicated on 50mcg levothyroxine

healthunlocked.com/thyroidu...

Cheaper and easier to have requested GP increase levothyroxine to 75mcg and retest again in another 6-8 weeks

NDT is much trickier to manage that levothyroxine

What are your most recent vitamin D, folate, B12 and ferritin results

Approx how much do you weigh in kilo

Kit_Monster profile image
Kit_Monster in reply to SlowDragon

Hi slowdragon.

My most recent tests for Vit D, folate, B12 and ferritin are in my post above. Some go back to Feb this year. Still a bit of work to get them optimum, but getting there.

Checking back through my notes from my last appointment, I wasn't getting on with T4, with new symptoms appearing that I didn't have when not medicated and just low on thyroid hormones. Even a T4 brand change didn't help. So Dr suggested trying NDT.

I had the DIO test done which shows that I have some issues with alleles at DIO2 and therefore T4 to T3 conversion.

You've now got me wondering about the switch to NDT and whether that was the right thing to do. I have to admit I really surprised at how much trial and error is involved with medication and dosage levels. I just assumed that thyroid issues would be as well understood as diabetes and as good a system for monitoring and managing it in place.

I have a lot to learn!

SlowDragon profile image
SlowDragonAdministrator in reply to Kit_Monster

are you also diabetic?

The problem with any thyroid replacement hormones that contain T3 is this will reduce TSH a lot ….

usually we get metabolism improved first by slowly increasing levothyroxine dose up to full replacement dose

which brands of levothyroxine have you tried

Many people don’t get on well with Teva brand levothyroxine

Approx how much do you weigh in kilo

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Kit_Monster profile image
Kit_Monster in reply to SlowDragon

Hi again slowdragon

I'm not diabetic. Only c.47kgs (very petite).

I started on Teva 50mcgs but had instant sickness and hammering headaches upon taking the tablets. I switched brands to Eltroxin. I felt groggy and spaced out from the start.

The nausea / sickess, dizziness and groggyness only started when taking thyroid medication.

SlowDragon profile image
SlowDragonAdministrator in reply to Kit_Monster

common to need to try different brands of levothyroxine

Wockhardt only make 25mcg tablets. Often well tolerated

Accord make 50mcg and 100mcg tablets

Also boxed as Almus via Boots or Northstar via Lloyds

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

As very petite, only likely to need around 75mcg levothyroxine per day ……possibly with addition of small dose of T3 prescribed alongside…..once stable on levothyroxine

Kit_Monster profile image
Kit_Monster in reply to SlowDragon

It really does seem to be trial and error!

I am thinking that the switch to NDT may have been premature.

Kit_Monster profile image
Kit_Monster

Just an update - there may be a bug going round as I've spoken to several people today who have exactly the same symptoms and who don't have thyroid issues.

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