My hashis journey - t4 to NDT to t4/NDT to t4/t... - Thyroid UK

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My hashis journey - t4 to NDT to t4/NDT to t4/t3 - what next?

HornM profile image
11 Replies

I have learnt so much reading posts and replies over the last while, and it seems I have finally hit a bit of a wall with my own experimentation and would absolutely love your thoughts or advice you might have for me.

Since being diagnosed with Hashis, I have tried a number of methods for medicating. I have never felt totally 'well', and although I do have a secondary diagnosis of Chronic Fatigue Syndrome/ME, I do wonder to what extent my chronic fatigue symptoms are simply chronic, undermedicated hypothyroidism.

I might give my history of medication attempts - apologies for being long winded! - as I imagine some of you will have opinions on various things I've tried. FYI: I'm 35 year old female, 170cm, 52-55kg; whole food diet, predominantly vegan, some fish, strictly gluten, dairy and refined sugar free.

Starting from the beginning, I was initially put on Eutroxsig (Australian t4/levo). I gradually increased to 75mcg and stayed there as per the direction of my doctors (two GPs - one of them integrative/functional). Unfortunately I don't have a copy on hand of my most recent bloods on this dose (would've been January 2021), so these earlier numbers, where I was also levelled out on the dose, will have to do for now:

29/10/20

TSH: 2.39 (0/5 - 5.0)

FT4: 15.9 (11.0 - 22)

FT3: 4.3 (3.1 - 6.4)

And these only from 12/11/20:

FT3: 3.7 (3.1 - 6.4)

Reverse T3: 356 (140 - 540)

After this time, I decided to try NDT as I identified myself as having hypo symptoms still (brain fog, fatigue, weakness), despite being 'optimally medicated', by t4 standards, according to my doctors. My doctors agreed to my trying NDT, given persisting symptoms, and said I showed poor conversion and reasonably high reverse T3. There was never any mention or discussion of increasing my t4. I didn't know then what I know now, but on reflection feel that alone could've been worth a shot. I'm even wondering if these numbers necessarily show me as a poor converter?

And so, I started on NDT. I gradually increased by 1/4 grain at time, until I reached a 1.5 grain tolerance in one dose. I did not feel well. I was especially fatigued, dull, depressed. Even more so than when I was on t4. At the time, I never tried taking a second dose of NDT later in the day, which was a mistake maybe?

8/4/21

TSH: 2.40 (0.5 - 5.0)

FT4: 9 (11 - 22)

FT3: 3.7 (3.1 - 6.4)

TPOAb: 408 (<35)

TgAb: 28 (<115)

This was also the last time I got vitamins and minerals checked:

Ferritin: 52 (30 - 200)

Folate: >45.0 (>6)

Vit D: 102 (50 - 250)

B12: 995 (200 - 700)

Zinc: 13.3 (9.0 - 19.0)

From here, my doctor agreed for me to try combination therapy with t4 as it seemed NDT just wasn't hitting the spot. It felt like I was getting absolutely nothing out of my dose, and yet couldn't tolerate any more in a single dose. When i started adding t4, I was far more sensitive to the effects of the NDT. I fiddled with very small dose changes (using how I felt to orient me) and landed eventually on 37.5mcg t4 (taken before bed) and 1/2 grain of NDT (taken on first waking). I didn't tolerate taking the t4 and NDT together - it made me feel speedy and anxious. On this dose, I found myself feeling pretty damn good for a portion of the day. I didn't have as much physical energy or motivation as I might associate with being 'healthy', but I was cognitively clearer, and in a better mood than I had been on any other dose. About 6 hours following my morning dose of NDT, however, I would crash. In the evenings I was fatigued and agitated. It was obvious to me that the positive effect of the NDT (t3, no doubt) was wearing off at this time every day, and so I tried to add more NDT. Much to my disappointment, I couldn't tolerate another 1/4 grain. It didn't matter if I split my NDT doses (morning and afternoon) or took them together, I would still inevitably wind up feeling what I identify as overmedicated (wired, foggy brain as though I'd had too many coffees, increased anxiety, restless fatigue). Having failed at adding NDT, I bumped my t4 up to 50mcg. This had exactly the same effect - a sort of wired, anxious state, with an uncomfortably restless fatigue - hence lowering back down to 37.5mcg. This stumped me.

Recent results below. FYI: not ideal, I know now, but test taken 15 hours after evening t4, and 5.5 hours after morning NDT. So unfortunately it's not capturing the evening slump, and is in fact in my good feeling window.

24/9/21

TSH: 2.06 (0.4 - 4.0)

FT4: 13.6 (9.0 - 25.0)

FT3: 5.0 (3.5 - 6.5)

TPOAb: >1300 (<60) **SIDE NOTE: interesting that these went up by so much after consistently coming down over time; this was shortly after my covid vax and I wonder if that has something to do with it**

Since then, my doctor has agreed for me to try adding t3 to t4. I stopped taking NDT and remained on 50mcg t4 (although changed to Eltroxin as is gluten free and dairy free; this is 25mcg less than my earliest t4 dose). After 2 weeks on 50 mcg alone (and yes, feeling undermedicated, but coping), I tried adding 5mcg of t3 in the morning, same time as t4. Which brings me to the last 24 hours. I felt absolutely horrendous. About half an hour after taking the t3 first thing yesterday, I started to feel quite intensely dense and foggy in the head, whilst also feeling somewhat wired and manic. I read another contributor's post in which she described the feeling as 'drugged'. I would agree with this. As day turned to night - hours and hours after the morning dose - I felt increasingly tired but still very much wired - really unwell, quite frankly, with disturbed mood - and then wasn't able to sleep until 4am. Next day - today - I have not taken t3 again as I feel awful, poisoned, as though I have a bad hangover, body fatigue, and it feels counterintuitive to do again - particularly as I have a CFS diagnosis and am doing everything in my power to reduce stress.

I wonder a few things...

1. I have read that t3 can take a bit to get used to, but I'm not sure this feeling of extreme toxicity and sleeplessness is the norm? (I had my cortisol saliva levels checked in Nov 2020, and they were 'high' in the AM and cusping on 'low' in the PM - I wonder if it's worth trying t3 at night instead?)

2. I wonder whether I should in fact be on 75mcg of t4 after all, if I go ahead with trialling t3, given I wasn't even at top of the range back when I took this as my sole therapy? It seems some people say t3 will push your t4 up, and some people say the opposite.

3. Or should I just go back to taking 75mcg of t4, level out, blood test. Then consider taking 100mcg if my results are similar to this time last year on 75mcg. Is it possible that I was always undermedicated on t4 and might do well on it alone if I raise it?

4. And lastly, can anyone understand why I would experience the evening slump and yet not tolerate the added t4 or NDT when I was trialling t4/NDT? Any thoughts on ways around this?

I'm aware my ferritin levels were not great in April, and I've not been taking an iron supplement consistently since then (my mistake, which I'm realising on putting this together). I have immediately started taking a daily iron and will raise ferrtiin relatively quickly I hope, as have done so in the past. I'm due to test all vits and mins again and will do so ASAP.

Again, sorry for being so long winded! In future I will share my journey in parts and pieces - I'm sure it would've been helpful had I done that earlier.

With HUGE thanks for those who take the time and interest :)

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HornM
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SlowDragon profile image
SlowDragonAdministrator

29/10/20

TSH: 2.39 (0/5 - 5.0)

FT4: 15.9 (11.0 - 22)

FT3: 4.3 (3.1 - 6.4)

Results on just 75mcg suggests under medicated

Standard practice is to get levothyroxine dose slowly increased upwards in 25mcg steps until as as high as tolerated, then if Ft3 remains low consider reducing levothyroxine a little and add T3

If you can’t tolerate adding T3 at moment, and had a lot of dose change…..yes perhaps trying just levothyroxine at 75mcg ….retest 6-8 weeks time

Meanwhile working on improving low vitamin levels is essential

HornM profile image
HornM in reply to SlowDragon

Thanks so much for confirming this SlowDragon, I've just taken 75mcg, will retest in 6-8 weeks, focus on vit and mins for time being.

It seems kind of obvious now I've gone over history and written this all down. Can't believe I didn't realise I was undermedicated on t4. This forum has been so valuable. I so appreciate you taking the time to reply!

Until later...

Next post won't be so long :)

HornM profile image
HornM in reply to SlowDragon

Just one question - based on these t4 results we're discussing, would you try increasing the dose by another 25mcg every day, or perhaps on alternate days? Obviously not going to do this now, but curious as to how to handle these sorts of numbers in future.

SlowDragon profile image
SlowDragonAdministrator in reply to HornM

Generally it’s best to only increase by 25mcg maximum. Especially if been under medicated a long time, or if had lots changes of dose/brands etc

Some people need to increase slower at 12.5mcg daily (eg 50mcg and 75mcg alternate days)

HornM profile image
HornM in reply to SlowDragon

Sorry, I didn't word that well at all. I'm looking to the future - wondering if, should my blood results once levelled on 75mcg be similar to these from last year, would you say I would then increase another 25mcg daily, or smaller portions from there?

For now Ill start by increasing to 75mcg, level out, test - as suggested.

Thank you!!

SlowDragon profile image
SlowDragonAdministrator in reply to HornM

How much do you weigh in kilo approx

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

HornM profile image
HornM in reply to SlowDragon

Right, thanks for this. My weight fluctuates a bit, 52-55kg I'd say. Based on that I think I'll try alternate days 75mcg/100mcg if I test similarly to last year once leveled on 75mcg.

Good to have a plan as it seems my doc isn't providing a lot in the way of informed guidance. Much appreciated :)

HashiFedUp profile image
HashiFedUp

For me to feel well I need my TSH to be below 0.6. Can you get your TSH down perhaps?

HornM profile image
HornM in reply to HashiFedUp

Thanks HashiFedUp, I think you're right that it needs to be down. I'm going to trial increasing t4 only as I hadn't realised I was in fact undermedicated when it was assessed that it didn't work well for me. Surely that will get my TSH down, but more importantly, improve quality of life!

June25 profile image
June25

Have a read of Tania Sona Smith's story here. There are many takeaways in it for people who for one reason or another have not settled on a treatment that works for them:

thyroidpatients.ca/2019/08/...

HornM profile image
HornM in reply to June25

Thank you June25, will have a read.

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