loosing the will: I have recently swapped from... - Thyroid UK

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loosing the will

Ajva profile image
Ajva
27 Replies

I have recently swapped from 1 grain armour and 50mcg t4 tirisont to 100mcg tirsont and 9.5mcg of compounded t3.

I can’t even explain the level of fatigue I feel as though I have been hit by a bus (whole body aches), can hardly move or get out of bed. I am also experiencing. I am having a lot of histamine reactions, asthma’s got a lot worse, I am constantly hungry and falling asleep during the day. Between 2-4/5pm I can’t function at all.

So my Dr upped me to 125mcg t4 but still 9.5mcg t3.

I don’t know what to do or whether to swap back to my old meds. I was still having problems even on those as the fatigue was bad (but not this bad) & the body aches, hair loss was crazy. The reason I didn’t just up NDT is due to heart palps and going hyper as soon as I increase over 1 grain. I also get palps with the armour and tirosint mix. I do have PoTs so this obviously makes me quite sensitive.

I am supplementing for low vits, my iron levels are low 17 on the nhs range.

You can see by my bloods they are okish but t4 is still low which is why I had the 25mcg increase.

any help would be appreciated I just feel so unwell and I am unsure what to do for the best…

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Ajva profile image
Ajva
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27 Replies
StitchFairy profile image
StitchFairy

You need to give more info about when that test was done and when you last took each of your thyroid meds before the test. If you're taking T3, you don't need a high FT4 level.

Ajva profile image
Ajva in reply toStitchFairy

hi there sorry for the lack of info. Test done am fasting labs, no biotin and meds taken 13 hours prior to test.

T3- 10am

T3- 2pm

100mcg t4 8pm

Bloods done at 9:30am fasting

StitchFairy profile image
StitchFairy in reply toAjva

Well from your description of how you feel, I'd say you're on too much of both meds. Your T3 level is quite high considering your last dose was 13 hours before. And you don't need a high T4 level when you're taking T3. Your doctor should know that.

Ajva profile image
Ajva in reply toStitchFairy

yes I agree, Dr did point out my t3 is high and she did not want to increase that.

SlowDragon profile image
SlowDragonAdministrator in reply toAjva

meds taken 13 hours prior to test

Last dose levothyroxine should be 24 hours before test

Ajva profile image
Ajva in reply toSlowDragon

O I never knew this? I thought it was 12 hours plus? I wonder where I got that from. Problem I have is I take my t4 at night and bloods in the morning

SlowDragon profile image
SlowDragonAdministrator in reply toAjva

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

Lalatoot profile image
Lalatoot in reply toStitchFairy

stitchFairy, some folks do need a high ft4 when they are taking t3. It is an individual thing as to where our levels need to be on combo.

Ajva profile image
Ajva in reply toLalatoot

I have heard this as well. Always conflicting info and experiences too. I think I do need a higher t4 as mine was not even in range on NDT and I felt dreadful with really high t3 and really low t4

Lalatoot profile image
Lalatoot in reply toAjva

Some folks on here report that they need both ft4 and FT3 into the top third of their ranges to feel well.

It took me 2 years of dose adjustments to feel I was on a combo I wanted to stay on longer term rather than more changes. For me this was happened when ft4 was 50% and ft3 was 72%.

Ajva profile image
Ajva in reply toLalatoot

I am 2.5 years in on meds and I have had so many dose changes and medication changes. Was on levo (nhs), NDT, levo again, NDT, T4 and t3 combo, NDT & added levo, now t3 and t4….

I can’t seem to find the right combo and dose to take my symptom away. I am deff Having less heart palps and BP issues on this combo now but it has increased the fatigue a lot.

StitchFairy profile image
StitchFairy in reply toLalatoot

Yes, I agree some do need high FT4, but I was taking symptoms into account which sound very like over medication. If Ajva doesn't feel any improvement on increased T4 dose then she's likely over medicated and either T4 needs to be reduced, or T3 needs to be reduced, or even both.

Ajva profile image
Ajva in reply toStitchFairy

yes I agree, I can’t even work out what is going on. The higher my dose is going the more fatigue I am experiencing. Can over dosing in t4 cause bad fatigue as well?

StitchFairy profile image
StitchFairy in reply toAjva

Yes, in my expereince too much T4 can definitely cause fatigue, especially when you're already taking T3. I know some people won't agree with this, but if I were you, I'd skip a day of both thyroid meds and see if you feel any improvement at all. If you feel the slightest bit less fatigued, it's probably an indication that you're over medicated.

SlowDragon profile image
SlowDragonAdministrator

You need to sit tight and wait 6-8 weeks minimum before retesting thyroid levels.

I am supplementing for low vits, my iron levels are low 17 on the nhs range.

exactly what vitamin supplements are you currently taking

What were most recent vitamin D, folate, ferritin and B12 results

Have you had coeliac blood test done

Are you on strictly gluten free diet and/or dairy free diet

Ajva profile image
Ajva in reply toSlowDragon

hi there slow dragon. Here are my vit levels

Taking heme iron three arrows

Thrones b vits

Coeliac test done was negative but I am gluten and dairy free.

Vit D 2,000

Pro biotic I take star power gummies

Coo ok lour
SlowDragon profile image
SlowDragonAdministrator in reply toAjva

vitamin D is a bit low especially now going into winter

Suggest you increase vitamin D to 3000iu - retest in Jan

Test twice yearly when supplementing 

via NHS private testing service if not redoing full Medichecks

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply toAjva

iron and ferritin

retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member 

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

This sounds like you adrenals need support so you can increase your ndt xx

Ajva profile image
Ajva in reply to

this is true, but due to the PoTs I have and orthostatic hypotension I think my body (heart) can not be on higher doses of t3

in reply toAjva

hey :) I don’t agree. My friend who is in this forum has Pots and couldn’t raise her armour without enough cortex. I myself have been diagnosed with dysautonomia (which was characterised by an erratic heart rate often going sporadically above 200, breathlessness, dizziness, fainting etc.) taking cortex has stabilised many of those symptoms.

T3 doesn’t have much to do with Pots IMHO, but you do need to support your adrenals if you want to raise NDT/T3. Pots symptoms are often just unsupported adrenals.

Dr p’s book goes into a little explanation about this. Adrenal support is essential for raising any thyroid meds, esp. T3.

Ajva profile image
Ajva in reply to

no I do see what you mean. You have to have good adrenals to be able to tolerate any form of t3 or NDT. But some of the fillers in armour and t3 meds can also cause palpitations. Some of the recent papers I have read online also conclude that t3 shouldn’t be used on people with heart conditions (ie pots).

So I do slightly disagree. Also my pots is histamine related as well as I also have MCAS and multi system dysautonomia.

It is complicated as every person is different. But I do not do well on any t3 over 10mg my HR is crazy and blood pressure is all over the place

Also thank you for letting me know about the cortex supplement. I never knew this existed. Could you recommend one at all?

in reply toAjva

But I do not do well on any t3 over 10mg my HR is crazy and blood pressure is all over the place

I believe this is because you’re not supporting your adrenals. The same used to happen to me before I took cortex, but happened even more dramatically to my friend in the same position.

Papers you read online are completely scaremongering re. T3 and the heart. Your heart is in far greater danger if your hypo and not on enough t3!

You would need to test your cortisol before supplementing, adrenals are an organ like any other. (I say that because I never used to give them the respect they deserve and would blindly supplement). You’d need to start with an adrenal saliva cortisol test, can get one from regenerus. No caffeine 24 hrs before or during collection and no biotin containing supplements a week before.

I’ve seen massive gains using adrenavive, I take a total of 600mg split across 3 doses that I worked out according to my results :)

Ajva profile image
Ajva in reply to

thank you for this. It is actually very helpful. I did have a saliva test done through medichecks but they have removed it off their website at the moment. Where do you get your tests from? My saliva did show a few issues but with high cortisol. I have been tested for addisons.

I will try and source another test and go from there before supplementing.

in reply toAjva

you’re welcome :) I would get the regenerus test if I were you as they do DHEA, which is really handy. I didn’t find medichecks a very realistic reflection of how I felt so I wasn’t sure about their test. Good luck 😊 it’s hard work all this xxx

Ajva profile image
Ajva in reply to

it is indeed, thank you so much. Much appreciated for all the info.

Ajva profile image
Ajva in reply to

also yes agree hypo causes me terrible trouble with my heart!

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