How to know which symptom is which :) - Thyroid UK

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How to know which symptom is which :)

Incoguto profile image

Hello,

I used to be on Armour and then Nature Throid back in 2015-2017, feeling generally quite well up until few years ago when my endo put me on Levo due to NT reformulation. Even with added t3 I was feeling dreadful, with labs high in range.

I have asked to be moved to Armour about a year ago and still tweaking with full endo support.

I take 2.5 grains of Armour combined with 12.5 Levo. These are my latest results after 6 weeks on this dose:

TSH 0.01 (always suppressed)

FT3 6.2 (3.1-6.8) 83%

FT4 16.8 (12-22) 48%

All tested after 24 hours of taking meds.

I can't sleep on this dose (can't fall asleep, wake early too, feeling hot, tired, puffy, hungry, despite being on low glycemic diet for the past 2 months and losing 10 pounds thanks to cutting out sugar etc.). Today I started to get irritated (I'm before my ovulation). Base of my neck started to swell frequently on this dose, my boyfriend has noticed it.

Previously was on slightly more Levo and less Armour, with results:

FT3 5.8 (3.1-6.8) 73%

FT4 16.4 (12-22) 44%

I was able to sleep largely, but was feeling a bit depressed or flat, started to get bad bloating and crushing fatigue after 7 weeks on it.

NDT is so much better for me, I am functional, but still struggling with many symptoms.

I had vitamin tests done recently, my vit D was optimal, have added a bit to bump it up for winter, my B12 is towards top of range, iron was top of range with ferritin just under half range, folate over towards top of range, I also take zinc, omegas, selenium on top of above vits.

Thank you for reading.

Any advice on what to do or what I'm doing wrong, is very welcome. It is very hard to know which symptoms is from under or overmedication.

24 Replies
SlowDragon profile image
SlowDragonAdministrator

Is your hypothyroidism due to autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies or by ultrasound scan

Are you on strictly gluten free diet

Do you typically split the NDT into 2 or 3 doses through the day

Was test done as early as possible in morning before eating or drinking anything other than water and last 1/2 or 1/3rd of daily dose NDT 8-12 hours before test

Last dose levothyroxine 24 hours before test

Incoguto profile image
Incoguto in reply to SlowDragon

Yes, I have Hashis, my antibodies fell dramatically on Armour, from over 1000 to circa 260 recently (TPO), ATG is first time ever in range :)

I have been on GF diet for 2 years, but unfortunately didn't do anything to my antibodies or how I felt. Being on low glycemic diet helped tremendously.

My endo asked me to split before and I did that for 18 months more less, disaster, I was fluctuating so wildly during the day, I had to be in bed most of the time. Once changed to one dose in the morning I saw big improvements in wellbeing.

So my test was 24 hours after meds, Armour and levo. Do you think my FT3 is too high? Or what could be causing depressive moods and bloating with FT4 44%, FT3 73% results?

Thank you for responding :)

SlowDragon profile image
SlowDragonAdministrator in reply to Incoguto

If last dose NDT was 24 hours before test, you have falsely low Ft3 result…..so yes

Perhaps try less Armour and more levothyroxine

Do you take levothyroxine waking or bedtime?

Always get same brand levothyroxine at each prescription?

Incoguto profile image
Incoguto in reply to SlowDragon

Oh right okay, so in reality could I be over range? May I ask where your FT4 or FT3 are more less after 24/12 hrs please? Just trying to see if people have high FT3s, or do they need them lower. My symptoms are almost identical for over and under

I have swapped some Levo for Armour in August/September, my FT4 was 44%, FT3 was 73% after 7 weeks, I was able to sleep, but was also very fatigued, bloated and felt depressed (from being fatigued maybe), also had these weird head spins/vertigo episodes, which have gone away when went back to higher Armour and lower Levo. I wonder if my FT4 at 44% might be too low?

Would you know if there are any people doing well on lower ft4 and higher ft3?

I take Levo at waking, I have tried taking it at night and I was wide awake 😞

Always the same, brand Eltroxin

Thank you! 😀

SlowDragon profile image
SlowDragonAdministrator in reply to Incoguto

Perhaps you need to test adrenals

regeneruslabs.com/products/...

We are all different

You can read my profile. I take most of my levothyroxine at bedtime. Highest dose of T3 at bedtime too….I find it improves sleep

Incoguto profile image
Incoguto in reply to SlowDragon

Unfortunately have no access to any saliva testing here, I'm not in the UK :( I will read your profile, thank you for your help :)

Incoguto profile image
Incoguto in reply to SlowDragon

Thanks again, I have read your profile, it seems like your ft4 is higher than mine and Ft3 lower (both top third of range). Something I need to consider.

Hi, about the same as me. I'm on 2,5 ndt +levo. I split the dose 1,5ndt+levo in the morning and 1grain at 2 pm and 5mcg T3(synthetic) at 6 pm. I noticed that if I take more than 1,5 grain in the morning I can't sleep although I am more energetic and move better but the HR also exceeds 100hb at rest. I'm bloated too.

Incoguto profile image
Incoguto in reply to adin

Hey, do you also take synthetic t3? I see you are also having some difficulties. Do you know what your results are on this dose?

I think I'm bloated because my t4 is still under midrange, that's my best guess.

I can sleep if I take 2.5 grains plus 15 levo in the morning. But if I go up to a bit more Armour, less t4, I can't and both ft3 ft4 go up as a result.

adin profile image
adin in reply to Incoguto

No, I don't have any results on this dose. Maybe next week I will be going to the labs. I'm on this dose for a few weeks. You are right, it's needed to be an higher level of t4, I feel too and maybe I will rise the levo and I will cut ndt to 2 grain. Now I take 40 levo +2,5 thyroid - s (Thai ndt)+t3. Probabil I'm going to 50 levo +2 ndt +5t3. Overall I need 125 mcg of t4 no matter how I take it (synthetic or ndt or synthetic +ndt) and 20 or 25 t3. But for sure I feel more human if I take ndt in the mix. The ratio in the pig thyroid is about 4:1 but I think the human ratio is a bit different (5:1 or 6:1) that's why I need to add some levo.

Incoguto profile image
Incoguto in reply to adin

I'm still unsure if I need to have higher ft4 lower ft3 or lower ft4 and much higher ft3 to compensate for it.Have you changed few weeks ago from 4 grains to this dose? It will take a good few weeks to embed this dose yeah, it's normally week 4 and 5 I start to feel what's it's actually doing.

I think the ratios are different for everyone and also what we take through the mouth and is being absorbed is another story.

Armour on it's own used to suit me for a few years, now it's an issue.

pennyannie profile image
pennyannie in reply to Incoguto

On NDT you dose to relief of symptoms and not a blood test.

The blood tests, guidelines and ranges were all introduced to be used when Big Pharma launched it's T3 and T4 synthetic thyroid hormone tablets in the middle of the last century.

I think taking NDT and Levothyroxine complicates matters .

On NDT it's normal to have a suppressed, low TSH and a higher T3 and a lower T4 than from when on Levothyroxine / Liothyronine :

Marrying these two options and looking to fit into a ranges seems futile to me, but would use the ranges just as a guide as to where you are and how you feel.

Obviously if you are working with or alongside a doctor/endo your freedom to think outside the guidelines will likely be difficult.

Incoguto profile image
Incoguto in reply to pennyannie

This is it, I have been on Armour only and was dosing to symptoms relief, it worked for 3 years and then I have become overdosed (started with losing 9 kilos of weight in 3 weeks, I looked so sick, heart rate was over 100 etc).I worked up to 2.5 grains of Armour, my ft3 was good at 80% after 24 hours of taking dose, while ft4 was bottom of range. I felt awful and this wasn't shifting so after 2 months I added t4, reduced Armour. I was able to be functional. But adding t4 to Armour is the most difficult thing I have done and still doing.

I have really two options, either upping Armour and losing some Levo again, but I stop sleeping when I add Armour and when it's over 2.5 grains 🤷‍♀️ this is when my ft3 goes to 80% and more, I start to get heart palps, hot sweats, fatigue on top of it. And this doesn't go away for months until I change..

But part of me thinks that maybe I could drop t4 further and see if I can feel OK on a higher dose of Armoue on its own.

Second option is further reduce Armour and add t4.

Actually one more question, I was asking Slow Dragon there as well, my ft3 is 83% after 24 hours, is that not too high? Are you taking NDT?

Thank you 😊

pennyannie profile image
pennyannie in reply to Incoguto

Well having Hashimoto's AI disease throws a spanner in the works for you.

Your own thyroid hormone production will become erratic as this disease progresses and you might experience " swings " when the thyroid over and under compensates itself.

Ultimately as your gland dies so does this disease, and these " swings " a thing of the past, but it can be a juggle of meds in the mean while and long term you will be more reliant of full spectrum thyroid hormone replacement.

Guessing you've read around Hashimoto's with regard to how to try and calm down your immune system response, and read of food triggers quite common with this AI disease.

I'm with Graves post RAI thyroid ablation and now managing lingering Graves, Thyroid eye disease and hypothyroidism.

P.S. it's said 1/4 grain NDT equates to around a T4 x 25 mcg but I'm not really sure you can even draw these comparisons.

Incoguto profile image
Incoguto in reply to pennyannie

My thyroid grand is completely suppressed and my antibodies fell (TPO) from thousand to couple of hundred and some are in range now first time ever (ATG). This ft3 is always 80% when I increase Armour and has been this way for years. I don't believe this is a swing or a flare up. Also these symptoms creep I regularly at 4-5 weeks of changing the dose to higher Armour.I have read about Hashis, absolutely, almost every possible research there is about thyroid, I have been diagnosed 8 years ago and I'm a clinical dietician, so very meticulous about my food also.

I was more curious about your experience and if you take NDT, if you split it or take all in one go. Thank you😊

PS. I agree, I also don't think these conversions of Levo to NDT work at all, from my own experience 1/4 of grain is more like 12.5 of Levo in how it works for me.

pennyannie profile image
pennyannie in reply to Incoguto

Oh - I didn't realise that - ok then :-

I take 1 + 1/2 grains NDT at around 3 am at a toilet break -

Bloods taken after around 10 hours from draw : no food - just water -

My TSH comes in at 0.01 : no change there and my T3 and T4 have literally changed places from when I was on 125 monotherapy with T4 :

Now my T3 comes in at around 90/110% through and my T4 25/35% through :

Optimal vitamins and minerals do make a difference to my conversion :

I have seen this especially true in regards to where my ferritin level comes in as I only do a yearly blood test to include my core strength vitamins s and minerals s as I'm supplementing these as well.

Incoguto profile image
Incoguto in reply to pennyannie

This is very helpful, thank you 😊Are you feeling well?

Maybe I should do a test 10 hours after my meds to see where my ft3 is, but I assume it would be much higher than yours.

Maybe like you I need to take Armour only.

pennyannie profile image
pennyannie in reply to Incoguto

Well - for a start I am m 74 and single, so not having to work and likely in a totally different arena to you.

I'm much improved on NDT as taking T3 was a light bulb moment for me, and though my pilot light had been repaired and working again, and my brain slowly started to wake up.

I'm able to think more clearly and my cognitive functions massively improved.

I am now able to mow my own lawns, do my own shopping, drive my little car and have back my independence, as I was basically left housebound by mainstream medical, referred to as a conundrum, and refused no thyroid hormone replacement other than T4 - Levothyroxine.

So, I'm currently with 2 pairs of socks on, and 3 top layers and usually find a 15 minute nap in the afternoon sees me through to 10 pm when I go to bed, waking at around 6/7 am.

I believe my recovery has been compounded by drinking RAI ( details on my profile page ) but have had no acknowledgement of this fact though it is well detailed in Elaine Moore's first book - Graves Disease- A Practical Guide which was my starting point back to better health followed in due course by falling into this amazing forum.

Incoguto profile image
Incoguto in reply to pennyannie

Thank you sharing this, I am in my late 30s, working, but remotely, no kids, have a partner. You have improved a lot, that's really great and I was the same on levo bedbound..even the addition of synthetic t3 didn't do anything for me.

I am now coming home from shopping, which is possible now and a year or two ago was a bit struggle.

Would you have preffered to have your thyroid treated differently than by drinking RAI? I have hear similar stories to yours. My aunt has Graves.

pennyannie profile image
pennyannie in reply to Incoguto

Well considering we are looking at an AI disease loosing one's thyroid by drinking toxic waste that is known to be taken up by other glands and organs within the body - is simply madness : but it is a quick fix in medical eyes and I guess a game of 2 halves and some of those who fall through the net don't seem to count.

If patients are well on the AT medication the logical answer is for the anti thyroid medication to be offered as a long term option for if and when the immune system is triggered again, which is quite likely.

The AT drug can quickly block the T3 and T4 levels rising too high and again the patient is giving time, on the AT drugs for their immune system response to calm down.

Graves is said to be stress and anxiety driven, so the reality is one has to learn to live with it, and try and look at reducing stress and anxiety, which is challenging, but easier if you still have a thyroid.

After all we are looking at an AI disease that is in your blood and DNA and not thyroid specific.

I am worse off, now with thyroid eye disease, so disfigured but not seen as " bad enough " to qualify for eye surgery.

I am buying my own full spectrum thyroid hormone replacement as the NHS routinely only prescribe T4 monotherapy and I'm not seen as needing T3 or NDT :

I don' think you have read my profile and I don't wish to revisit this, here and now.

Incoguto profile image
Incoguto in reply to pennyannie

Sounds awful, I'm very sorry to hear.I have just got back home and read your profile.

My aunt has TED as well, her eyes are bulging and one of them is looking the other different continuosly. She takes t4 only and she is very poorly. Also had several heart surgeries and has a device on her heart as it was damage severely due to Graves. Liked you said, it was caused by a severe stress for her at the time.

Very sorry to hear all of it. I wish we were treated better by the medical establishment and offered options.

pennyannie profile image
pennyannie in reply to Incoguto

Well - when push came to shove I had to do it for myself as I was in an ever decreasing circle of wellness and my anger drove me into reading up on Graves and hypothyroidism.

I was fortunate to find this forum and I'm as good as I'm ever likely to be - I'm so sorry for your aunt as it sounds as though she " didn't qualify " either - unbelievable - but it's not that uncommon - thank goodness for the internet - as at least now we can try and become our own best advocates and get some quality of life for ourselves.

Incoguto profile image
Incoguto in reply to pennyannie

Totally, I understand, and you're right, thanks to internet we have a chance! Back to the drawing board for me and time to make some decisions, thank you for your help 😊

adin profile image
adin in reply to Incoguto

4 grain was to much for me so I slow down. Its to much t3 in there. I felt like I was hipo and hiper.

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