Feel Terrible - Any Advice Please?: I'm weaning... - Thyroid UK

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Feel Terrible - Any Advice Please?

HEA72 profile image
42 Replies

I'm weaning onto Armour Thyroid, guided by a doctor. I've been raising my dose by only 1/4 grain every 2 weeks, this slowly because I have low cortisol. The first two raises I had a few days of feeling jittery but this calmed with the help of taking ashwagandha and taurine.

I reached 60mg last Sunday (19th March). I crashed the following days, came out of it but remained feeling very hypothyroid. Today my energy went down again and then the adrenaline kicked in. It's making me feel full of anxiety and feeling panic attackey all day with pressure in my head, headiness, heart thumpy, wired, nauseated and toxic - it's horrible!

I've tried the ashwagandha, taurine and even rhodiola now to help bring down the adrenaline but they're not even touching the sides. My BP 136/80 and HR 76 this evening - both are raised to my usual readings of around BP 95/60 and HR 65. I'm going to contact my doctor tomorrow morning but I can't sleep due to the horrible symptoms. So if anyone's still awake and has some advice, I'd be so very grateful. x

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HEA72
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Jazzw profile image
Jazzw

Hi HEA72

It can be so tough getting the dosage right. Sending a big hug xx

My advice, for what it’s worth, is to try to push through it if you can. Your BP and your heart rate were artificially low because you were undermedicated. A BP of 136/80 is very very normal—nothing crazy about that at all. Neither is there anything crazy about a heart rate of 76.

It’s also possible that what you’re experiencing right now is absolutely nothing to do with adjusting your Armour dosage. You could have a bit of a bug, or eaten something you don’t normally eat (sugar occasionally does quite a number on me!).

Is it just the anxiety? (And that’s more than enough, don’t get me wrong, just wanted to check there weren’t any other symptoms).

Sometimes, it can help massively just to take some paracetamol—just the usual dose of 1 to 2 tablets—to take the edge off enough to get some sleep. I’ve never had much luck with adaptogens etc—I think it’s possible they don’t suit everyone.

HEA72 profile image
HEA72 in reply toJazzw

Hi Jazzw

Thank you so much for your reply, I really value it. You've helped soothe my worries. So kind of you to reply so late in the evening. x

That's interesting you don't get on with adaptogens. Unfortunately I can't take paracetamol, or any other pain killers - they make me feel toxic. My poor liver struggles since being hypothyroid. I do feel a bit buggy, so maybe that's playing a part but it feels more than that. You know when you get to a point where you simply can't work out what's what anymore because it all gets in a muddle? Other symptoms (which I'll add to my post) are feeling heady, now got a hot face, poor concentration, heart thumpy. I've had spells similar to this over the past year (before starting the NDT), put down to peri-menopause (I'm 50 years old) but this episode feels more intense.

I tried thyroid meds 10 years ago. A similar pattern back then: felt ok to start with, then got the 'hyper' type symptoms once I tried to raise above a certain doseage. Hence my worry this is happening all over again. My doctor back then didn't have the knowledge to guide me through it and took me off them. My new doctor seems to be more knowledgeable, so I'm hoping she'll be able to guide me better. As I don't want to give up if it is possible to get through this phase and progress forwards.

Jodypody profile image
Jodypody

Hi there sorry to hear you are struggling it’s not easy this journey we are all on, plenty of bumps in the road. Can I ask do you do any form of exercise?

HEA72 profile image
HEA72 in reply toJodypody

Hi JodyPody, No exercise to speak of, because I relapse or crash easily if I overdo it. So on better days I do some gentle walking around my garden or up/down my street.

radd profile image
radd

HEA72,

NDT can be tricky to introduce slowly if you have Hashi, as it’s vital to keep optimally medicated to prevent unwanted thyroid activity. 

Many find it easier to do a straight switch from a full Levo + T3 dose to a full NDT dose, then trying to raise slowly. Sorry you are feeling so unwell. 

HEA72 profile image
HEA72 in reply toradd

Hi radd, as far as I know I don't have Hashi's, not enough antibodies to be diagnosed with that. I'm weaning onto the Armour from no meds (from scratch basically). Maybe my wording was misleading on my post?

radd profile image
radd in reply toHEA72

HEA72,

Do you have a diagnosis why you are hypothyroid? You need to test all thyroid antibodies (including TRAb’s blocking) to totally eliminate thyroid autoimmune disease. 

Aside from the autoimmune risk, Armour will be more difficult to introduce with standing adrenal issues because it contains T3. That is why you are getting these adrenaline rushes. You may be better with some Levo. 

Adaptogens are great and I love them but they can be powerful too and I wouldn’t be introducing more than more thing at a time. Dr P and many other functional practitioners firmly believe the adrenals should be supported first or alongside thyroid meds but you need to know what stage of fatigue you are in to be able to support appropriately. 

Have you tried glandulars?

HEA72 profile image
HEA72 in reply toradd

I don't know why I'm hypothyroid. I've had a full thyroid panel done before and each time there's not been enough antibodies for an autoimmune diagnosis. I've not heard of the TRAb's blocking, where do I get this one done?

Yeah, what you say makes sense about the T3, however I have the homozygous DIO2 genetic polymorphism and had issues with Levo too.

I have tried Thorne's adrenal cortex in the past (this one suited me the best). I can't remember if I took it with meds though in the past. I'm not taking any now. I'm surprised my doctor has only suggested adaptogens for me so far. I've emailed her this morning. I hope she has more adrenal support suggestions to offer.

radd profile image
radd in reply toHEA72

HEA72,

I hope you fell better soon.

SlowDragon profile image
SlowDragonAdministrator

Looking through previous posts, can’t see any recent vitamin test results

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you taking

As you have Hashimoto’s, are you gluten free and/or dairy free

HEA72 profile image
HEA72 in reply toSlowDragon

Hi SlowDragon

Thank you for your reply. I've not got Hashimoto's, just wondering if I've given that impression somewhere that I need to correct that? I am gluten free but only have fermented dairy.

My last vitamin test resutls:

14 December 2022

vitamin B12: 883 ng/l [200.0 - 960.0]

folate: 14.9 ng/ml [3.0 - 18.0]

ferritin: 44 ng/ml [20.0 - 350.0]

17 August 2022

vitamin D: 130 nmol/L [50 - 200]

My doctor's ordering me a new lab tests for all of these in the coming weeks.

SlowDragon profile image
SlowDragonAdministrator in reply toHEA72

Hashimoto’s

Have you had BOTH TPO and TG antibodies tested

Or ultrasound scan of your thyroid

your ferritin is low

Have you had full iron panel test for anaemia?

Never supplement iron without doing full iron panel test for anaemia first and 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...

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

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...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary 

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

HEA72 profile image
HEA72 in reply toSlowDragon

Hi SlowDragon

Yeah, I'm working on increasing my iron. I don't know how much to take as a supplement. I'm taking some iron bisglycinate and trying to eat some black pudding each week.

My last full iron panel was 27 October 2022:

Inflammation:

CRP HS <0.3 mg/L (Range: 0 - 5)

Iron Status:

Iron 23.0 umol/L (Range: 5.8 - 34.5)

TIBC 69.8 umol/L (Range: 45 - 81)

UIBC 46.8 umol/L (Range: 24.2 - 70.1)

Transferrin Saturation 32.9 % (Range: 20 - 50)

Ferritin 51.2 ug/L (Range: 13 - 150)

I'm staying off the NDT, at least for today until I hear back from my doctor. I know in a matter of days though I'll crash due to stopping it. I'm scared, I simply don't know what to do for the best.

waveylines profile image
waveylines

So sorry to hear you are struggling. It can be a tough ride, I remember well. How much Armour are you taking currently?As you were taken off medication a while ago. You are in a chicken & egg situation currently. It's likely you body needs more ultimately but because it's effectively in a hibernation state it has to be woken up very slowly. Too much too quickly causes feelings of over cooked and too little causes feelings of crashing. It's a tricky balance. You may just have to grit your teeth & go through it. Low ferritin can cause symptoms of crashing too & palpitations.....

HEA72 profile image
HEA72

Hi waveylines

I'm up to 60mg of Armour. My doctor wants me to get to 120mg. I've stopped it today until I hear back from her. I'm very worried, because I'm a single parent with two children to look after. I can't cope with these symptoms. At this point I want to come off the meds but I know by going cold turkey I'll crash badly. I've been on them for 6 weeks. I'm wondering if it's easy to do as I haven't been on them for that long?

radd profile image
radd in reply toHEA72

HEA72,

120mg is the equivalent to 2 grains. Not everyone needs that much Armour. I’m only on 1 grain with some extra Levo to even the T4:T3 ratio.

You shouldn’t stop and start meds. If symptoms are unbearable just reduce by 1/4 grain and see it that helps.

Have you 6 weekly labs to share?

HEA72 profile image
HEA72 in reply toradd

My feeling is to stop the meds for a few days to let the symptoms settle and the thyroid hormones to drop a bit, then go back on a reduced dose. I'm due to have updated lab tests done in the coming weeks.

My latest NHS thyroid labs 11/01/2023 - not on any thyroid medication when taken:

Serum TSH level: 4.99 mIU/L [0.38 - 5.33]

Serum free T4 level: 13.0 pmol/L [7.9 - 14.4]

Serum free triiodothyronine level: 4.8 pmol/L [3.8 - 6.0]

please read my bio, you need cortisol support x

HEA72 profile image
HEA72 in reply to

Hi dontforgetcortisol, thank you, I've had a read of your bio. I'm scared of trying anything else in case I react to that too. I've used Thorne's adrenal cortex in the past but there have been times I've found that too stimulating, so I'm worried about trying it now. I'd like to come off the thyroid meds,let my system settle and start with a clean slate again. I'm feeling really toxic as this morning's moving forward. I've been on the NDT for 6 weeks and got up to 60mg a week ago. Is it possible to come off easily at this stage do you know?

Jazzw profile image
Jazzw in reply toHEA72

I wouldn’t stop it, HEA72. You’ve worked so hard to get this far. Reduce by a quarter if you really think that’s needed but stopping altogether is going to leave you in an even worse place a few weeks from now. If you stop, you’ll feel better for a day or two (nearly everyone does) but then you’ll feel a lot worse quite quickly.

Doesn’t matter if you haven’t taken your dose at the normal time today or if you’ve already eaten etc—just take your normal dose (or a bit less).

I think your main problem is ultimately going to be that you’re undermedicated and it’s the effects of being undermedicated that you’re feeling right now.

HEA72 profile image
HEA72 in reply toJazzw

I've just read a section in Dr Peatfield's book, which advises to stop for 5-10 days to let the T4 run down a bit. After a few days introduce adrenal glandular support at a very low dose, if no side effects, then introduce the thyroid med again within the week at half the dose of before.

From previous experience, I know I've got a few days leeway to not take any NDT at all until withdrawl symptoms start..... 😕

Jazzw profile image
Jazzw in reply toHEA72

OK. I haven’t got Barry’s book so I don’t know the context for him writing that. If you were over medicated (which I’m almost certain you can’t be) that would make sense but I’m not sure this is a great option for you.

Still, only you know how you feel and if you feel the only thing to do is to stop for a few days, then you can try I suppose. But you’re going to lose the fantastic progress you’ve made and that makes me sad for you. :(

HEA72 profile image
HEA72 in reply toJazzw

Yeah it is sad. I thought I was going to crack it this time. I did lots of healing leading up to trialing the thyroid meds again. I was going low and slow with my NDT dosing, trying to nurture my adrenals.

I'll see what my doctor says over the coming days. Dr P gives this advice I talked about, when there's low adrenal reserve. He advocates putting sufficient adrenal support in place first to allow the thyroid hormones to work properly. It looks like what I was doing was not enough. Or perhaps my faulty DIO2 gene is inhibiting conversion of T4 to T3 and I'm getting a build up of T4 in my system? It is a very frustrating situation to be in.

I want to say another thank you for replying to me last night. You helped settle my mind enough to get some sleep. I'm amazed I did! I thought I was in for a rocky whole night. You've been very kind with your time and advice.

Jazzw profile image
Jazzw in reply toHEA72

I’m glad it helped a bit. There’s something about it being late at night that makes everything seem really hard.

Hopefully this is just going to be a tiny setback and you’ll get back on track quite quickly. xx

HEA72 profile image
HEA72 in reply toJazzw

I've just heard from my doctor. She advises I stay on my thyroid meds and has suggested supplementing with DHEA for adrenals, as I'm low in that too. She says the more issues there are with NDT and T3, the more you need it long term. I'm asking her about adrenal cortex glandular and if I can reduce my NDT dose in the coming days....

HEA72 profile image
HEA72 in reply toJazzw

I'm back on my Armour. I started feeling myself sinking yesterday afternoon (48 hours after my last NDT dose), had my appointment with my doctor and got a dose straight into me after that. After an hour I felt myself lift up, so it is helping and working. My doctor's warned me I will feel crappy at times but it should pass, I have to be patient. I've gone back down to my previous dose (45mg) which I tolerated before. I'm going to wait until I'm on a more even keel with these symptoms and then raise slower than I have been. I've now started taking some Thorne Adrenal Cortex and working to raise my ferritin. Hoping this formula/combo will see me through out of the woods....... 🤞

Jazzw profile image
Jazzw in reply toHEA72

Oh, I really hope so. Will cross everything for you—fingers and toes. 🙂xx

in reply toHEA72

Initially cortisol presence can increase thyroid hormone uptake so much that you may feel over stimulated/strange. Some advise to lower thyroid hormone dosing to let thyroid hormones run down a few days before starting ACE to avoid fast uptake symptoms.

Beau55 can also attest to the same experience with NDT x

HEA72 profile image
HEA72 in reply to

Yes this is my feeling, to stop the NDT for some days, to let it run down, allow my system to settle and resume on a lower dose and try and address the underlying cause to this issue and get some better adrenal support in place.

in reply toHEA72

I think that sounds like a good idea, I wouldn’t stop the NDT tho, I would reduce it. You don’t want to make your body more panicked than it is. You are describing what Peatfield called “thyrotoxic” symptoms where thyroid hormone is building up and not being metabolised properly.

HEA72 profile image
HEA72 in reply to

Yeah that's my feeling "thyrotoxic". I know not to stop it completely (did that before and boy did I crash!). But I feel I need a few days off it to calm things down and then resume at a lower dose. I'm hoping the T4 will buffer me along whilst I have the few days break. I know the T3 will completely drop. I wonder if I'll feel that? As I'd only got up to 9mcg per day ( in my NDT) for the past week.

I've just heard from my doctor. She advises I stay on my thyroid meds and has suggested supplementing with DHEA for adrenals, as I'm low in it too. She says the more issues there are with NDT and T3, the more you need it. I'm asking her about adrenal cortex glandular....

Beau55 profile image
Beau55 in reply to

HEA72 what dose were you on before this recent raise?

I have the same symptoms trying to increase with low cortisol/not enough adrenal cortex. I feel completely toxic, sickly and a tearful anxious mess. To get things to settle down I usually cut my dose in half the following day or two, then resume my previous dose for a couple of days then increase my adrenal cortex slowly.

I followed my endos advice and went onto 1 Grain of armour with no adrenal support in august and it was the worst period of time in my life. I even increased to 1.5 grains and it nearly finished me off. To not lose my ‘progress’ I dropped to 1 grain for a week or two, then I added in 300mg of cortex and then a few weeks later another 300mg (I can manage big jumps in cortex okay and already felt so ill I didn’t care). The symptoms settled down and I was able to keep raising after that up to my current dose (not final) 2.75 grains.

It’s fantastic you have read Barry’s book because that’s my bible and how I navigated to wellness last time. If you have low cortisol it’s going to be quite hard raising your NDT without putting adrenal support in place first. With you being on a low dose you are at an advantage to start now. I would cut your dose in half for a week or so (you can usually feel when you are ready) then start taking some adrenal cortex. I actually saw Barry and he recommended I take 600mg of adrenal cortex but everyone’s dose will be different and you may need a lot less than that. X

Feel free to PM me if you want more help

HEA72 profile image
HEA72 in reply toBeau55

Wow this is me! I feel exactly how you did with those symptoms. It's hideous isn't it!

Thank you for your reply, it's really helpful. That's so great you've got there in the end and worked out what you needed to get there.

I've just heard from my doctor. She advises I stay on my thyroid meds and has suggested supplementing with DHEA for adrenals, as I'm low in it too, as well as cortisol. She says the more issues there are with NDT and T3, the more you need it. I'm asking her about adrenal cortex glandular.

I feel I need a few days off the NDT to calm things down and then resume at a lower dose, the half dose you say feels more apt for me. I'm hoping the T4 in the NDT will buffer me along whilst I have the few days break. I know the T3 will completely drop. I wonder if I'll feel that? As I'd only got up to 9mcg per day ( in my NDT) for the past week.

What adrenal support do you use?

Janecalcina profile image
Janecalcina

hi .. I had a similar experience with Armour and stopped cause it scared me so I tried it again about year later and this time started at 45 for 2 months then cut a 15 in half and was at 52 for a month then went 60. I needed a slower increase for my body to adjust . I’m on 60 now with no problems.

HEA72 profile image
HEA72 in reply toJanecalcina

Oh well done, that's encouraging you've found a way to manage to increases. Thank you for sharing this information with me, gives me a little hope. Maybe I need to allow a longer time lapse between increases? I've been increasing by 15mg every two weeks. I thought this would be adequate but maybe it's simply not, going by my side effects.

What was your experience of stopping Armour completely?

What dose were you on at the time and how long had you been on it when you stopped?

Are you continuing to raise your present dose?

How are you feeling now?

Sorry about all the questions, I'm just intrigued. Your answers maybe helpful for my situation.

Janecalcina profile image
Janecalcina in reply toHEA72

sorry I didn’t explain well , I was Levo since 2007 but when I started seeing a hormone specialist he noticed my body wasn’t converting T4 to T3 so he started me on Armour. I first did every other day between Levo and Armour at 60 mg . I was ok for a month until I completely went to armour at 60mg and had panic attack like side effects . So I went back to Levo for awhile and then we waited and tried again this time using 45mg and Levo alternating , then 45 mg of armour only for a 1 to 2 months , then increase to 52 mg for a month then 60mg . I’ve been on 60 mg for 3 months and fine now . Only down side to this was I did gain about 5 pounds I get seem to get off and I had some minor hypo symptoms but nothing unmanageable .

arTistapple profile image
arTistapple

It’s hard sifting through the advice when you are not well. Whilst your doctor sounds a bit wiser than most, I have no respect for their judgement about dosage. They usually do not respect that feeling of being ‘over dosed’ when really you have just been increasing too fast and the body needs time to adjust (whether you are on natural or levo or T3). I have not tried NDT but have had 2x similar experience trying to get on to T3. I do stop my thyroid meds for one day and start again on the dosage I last tolerated well. Even although I was thoroughly dissillusioned by that dose! This last time has taken longer to settle but I am grateful the symptoms have settled. Really I would NOT stop my meds altogether even for a few days. Go to a dose you have relative confidence in. You really do not want to lose your gains. I wish I was as brave as Jazzw . I have a strong feeling she is correct but I could not just push through. I just do not have the confidence but I have put myself back. I think I need better adrenal support before attempting again. This is very difficult in terms of symptoms. Very unpleasant.

HEA72 profile image
HEA72 in reply toarTistapple

Hi arTistapple

Yeah, that's what I've concluded, I've raised too quickly. Plus I had a very emotionally stressful week before my symptoms started which will have contributed to where I am now. Like your method, I'm planning on going back to the last dose I was comfortable at. I have an appointment with my doctor this afternoon to go through it all. I definitely need more adrenal support in place! And optimise my ferritin level. My doctor's not even addressed that :-(

arTistapple profile image
arTistapple in reply toHEA72

It’s a strange moment when we realise the power of these remedies. We hope they will do us good and it seems that mostly they do. It’s just much more difficult than doctors imply. It’s more subtle. It seems to be beyond their comprehension. We follow until we hit something like this. You won’t repeat this in a hurry, hopefully. Best wishes.

Jazzw profile image
Jazzw in reply toarTistapple

Oh, it was easy for me to say but honestly, I don’t know that I’d be brave enough to take my own advice if it were me feeling awful! I think sometimes you do have to trust your own judgement and that’s ok—we know our bodies best of all, don’t we? But it would feel a whole lot easier again if we could trust our doctors too, wouldn’t it?

arTistapple profile image
arTistapple in reply toJazzw

Well getting to know my body better all the time. For me the real challenge is the mental/emotional stuff with the upping of dose ‘unsuccessfully’. If I more fully understood the situation and was brave enough, I think I would manage the physicals. It’s the mental accompaniments that are the true difficulties. Honestly? I feel a knowledgable physical hand to hold at those times would be wonderful. I would do that for anyone. Call me out. The human touch. One day there might be such a ‘thing’. I am seventy years old and yet when I recently had cause to examine this situation, I found that what I took for granted as a child, unconditional love from my parents, was what I could have benefitted from enormously, in those moments of crisis.

Jazzw profile image
Jazzw in reply toarTistapple

Absolutely. We need that confidence and when someone we trust provides reassurance, everything is so much easier. x

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