Insomnia & irratic heart: I've been on a very low... - Thyroid UK

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Insomnia & irratic heart

purplejuicy profile image
16 Replies

I've been on a very low dose of NDT for 15 days now, unable to raise as I get heart palps, sweating etc and ended up in a&e last weekend. I've had a dreadful cold since the beginning along with what I think is a swollen lymph node at the back of my neck. Now in the last 5 nights I've had barely any sleep because my whole body is buzzing, my heart is thudding, skipping and jumping out of my chest irratically and stomach is whirling/gurgling no end. :( I've been really clean with food, no grains, gluten, dairy or processed anything for a few days. Taking holy basil to lower my cortisol in the evening and only on 0.75 of a grain! Anyone had the same??

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purplejuicy
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radd profile image
radd

PJ,

It sounds like the NDT has bought on a full blown Hashi attack. I read that NDT can be difficult to tolerate for some who have suboptimal iron//cortisol levels and elevated thyroid antibodies.

The starting dose of NDT helps your body adjust to the T3 in NDT (if you haven't medicated before) but if held for too long, there is a normal suppression of the feedback loop between the hypothalamus, pituitary and thyroid gland (HPT axis).

This can mean less hormone is used so TSH rises and because the body is in a state of alert, antibodies may raise further and lymph nodes become infiltrated with lymphocytes ( white blood cells.)

I don't medicate NDT so others will advise better but I would have said you need to calm the immune system by removing the trigger (NDT) and starting again when responses are dampened and deficiencies have been addressed.

I hope you feel better soon.

stopthethyroidmadness.com/m...

purplejuicy profile image
purplejuicy in reply toradd

Yes I read that too. But if I stop taking the NDT all together, won't my thyroid suffer more without the support? No dr or endocrinologist will work with me because I'm taking it ☹️

radd profile image
radd in reply topurplejuicy

pj,

Yes missing thyroid hormone need to be replaced but you have been struggling big time for 11 days.

In a previous post you write. ...[ .. Yes I do believe I have low ferritin and stomach issues which have caused me terrible constipation so I'm assuming I have very low stomach acid, therefore not absorbing vitamins & minerals very well. My adrenals are stressed and I know I have LOW, OPTIMAL, HIGH, HIGH from a saliva test I did back in Feb ... ] .. You have also suffered a bereavement so adrenal health may have been stressed further.

Some need to supplement synthetic T4 & T3 whilst addressing nutrient & iron deficiencies and adrenal health as it appears this combination can be more sympathetic for some people. Both deficiencies and adrenals can take many months, even years to recover as long term undiagnoised hypothyroidism does us a lot of damage.

We are all different and many love NDT & I would like to medicate it myself but wouldn't dare yet as still have adrenal issues although everything has improved dramatically since adding T3 to my T4 last June.

Also some find the amount of T3 in NDT is not suited and either increase by adding a little more or reduce by lowering NDT dose and adding synthetic T4.

You have not supplied any thyroid blood test results. Have you tested ? ? ... Knowing T3 levels is important. Many say to test temps, etc, but I would say this is only good for the experienced user who knows their baseline.

I hope you find your answers soon.

purplejuicy profile image
purplejuicy in reply toradd

Hi thanks for the info. Yes I've done updated bloods in the last week and currently waiting on my full iron + ferritin, b12 and my full thyroid panel is due back on the 8th June. I've also ordered a saliva test as I think getting a more up to date look on my cortisol is wise given the bereavement etc as you say. I may have lowered my cortisol dramatically, therefore holy basil is not a good idea as it lowers it further.

I've also just ordered tiromel (t3) last night from reading patient stories on troubles raising/introducing NDT. Was thinking of adding it to a lowered dose of ndt? I really have no idea what to do for the best until my thyroid panel comes back 🙁

I'm going to skip the NDT and see how o feel, maybe I'll sleep better?

I have a ACL knee reconstruction on the 13th so very nervous about getting all this settled before I go under general anaesthetic

radd profile image
radd in reply topurplejuicy

pj,

Ooh poor you & even more stress !

As there is a small chance it is the acual pig thyroid that is causing the problems as opposed to adding T3, and you have an imminent operation, if I were you I would medicate T4 & add a little T3.

Many have initial side effects ( headaches, etc) for two or three days and then feel so much better. This will enable a speedier recovery from your op and you will be able to deal with medicating NDT when you are in a stronger position.

It is not about giving up .... just postponing until better timing.

Post all results complete with ranges (numbers in brackets) for members to comment.

purplejuicy profile image
purplejuicy in reply toradd

i've decided not to take NDT at all today in the hope of some relief - feel very tired and anxious already though but that's due to sleep deprivation too no doubt.

do you think it would be wise to go back onto T4 tomorrow morning at my original starting dose of 50mcg? I have no idea when the T3 will arrive so i'll be really undermedicated for a while i guess so that scares me slightly - or even lowering my NDT even further back down to 0.5 a day?

came away from the Dr's dissapointed - standard. i'd sent a letter to my GP requesting a full iron count along with B12 but all i got back was TSH (0.81) range 0.3-5.5. ferritin (66.2ug/L) range: 24-400 and folate (9.9ug/L) range 4.6-18.7. useful as ever! :( guess i'll have to pay for yet more tests privately but cannot afford any more this month - totally broke.

Turns out the lump on the back of my neck is just a cyst, obviously backed up ith infection and was told to just buy some decongestants.

so my ferritin and folate are below optimal. any ideas on how to increase folate? i'm taking b12 spray everyday for a boost now anyway.

got a NHS blood test for Lyme on monday too but i know that's only 30% accurate.

machineman profile image
machineman

if you can source some elderberry juice this will help with your cold and completely boost your immune system taking the pressure of your lymph glands.

and you want to get some natural vitamin E this will help your heart and thyroid drdach.com/Vitamin_E.html

also schisandra berries from a reputable chinese herb shop will help your glutathione levels and boost you lungs liver and heart also increases vitamin E action in the liver which your heart is connected to through taking the stress of your kidneys

the shute doctors proved Vitamin E worked better with the full compliment of vitamins and minerals which you get from the organic fruit and veggies remember do not cook your veggies or fruit over 40C Vitamin C regenerates Vit E, and Vit A helps Vit E

australiannaturaltherapists...

stay away from caffeine as well as this stresses the heart for around 5 hours and drains tyrosine out of your body by making adrenaline.

drugs.com/disease-interacti...

Naomi8 profile image
Naomi8 in reply tomachineman

Thank you for the info on vit E.I have been wanting to start supplementing again & this has clarified things for me after some negative reports.Do you supplement with CQ10?

machineman profile image
machineman

and one other thing that will help you and you want to incorporate this before you stand up do this 3 or 4 times before you get up from sitting or lying down.

breathe in through the nose for 4 seconds then hold your breath for 4-5 seconds and exhale out of your mouth this allows your lungs to absorb more nitric oxide from the air you breathe, this will stop you getting giddy it expands the arteries increases blood flow and well have a read the doctor will want to give you a pill for this :-)

google.com.au/search?q=nitr...

Naomi8 profile image
Naomi8

I had supraventricular tachycardia & ectopic beats(2 sorts of palpitations) for 18 years on thyroxine.When I introduced T3 by reducing my T4 & adding 15 mcgs of T3 split into three 5 mcg doses a day for a period of 3 days,I ended up in A&E & overnight in hospital for observation.

After this experience,I waited til I had got the all-clear from outpatient heart tests(ie ruled out atrial fibrillation)waited a few weeks,then tried T3 again,reducing T4 to zero as quickly as I could.On T3 I have virtually no palpitations-the ocasional brief episode.I recently introduced NDT in the recommended way,reducing my T3.I am now back on T3-only,as the T4 in NDT gave me palpitations,both ectopic & a 10 hour episode of tachy,with my heart going at double speed.For me,it is the T4 that gives me the palps.I blame the T4 for my initial problem with T3.T3 calms my heart,my nervous system & reduces many other symptoms of hypo.I have gone GF,too & take LDN,to calm systemic inflammation as much as I can.

faith63 profile image
faith63

yes..high blood sugar, sweating, swelling, high blood pressure, acne, heart racing, tremors..horrible! ndt can make a person very ill, especially with hashimoto's. For some, it flares the condition up badly..happened to me 3x on 2 different kinds of ndt.

purplejuicy profile image
purplejuicy in reply tofaith63

Did it cause digestive issues for you?? I've developed a really tender stomach which whirls and gurgles non stop. After eating is worse, it's like I have an ulcer? Feel nauseous most of the time and hard to breathe. Can't tell if it's the NDT or a delegate digestive issue that's arised from being hypo? Even though I've been taking digestive enzymes & ACV, following a grain, gluten & dairy free diet. My whole insides hurt 😞 How long did you stick to NDT then? It's only been 17 days for me now but I skipped taking it all together yesterday and I slept better, the heart calmed down enough to fall asleep at a sensible time but up early because of stomach pain and internal rushing/dizziness. I'm tempted to carry on not taking it until I get my bloods back next week? 🤔 See if my stomach improves at all?

faith63 profile image
faith63 in reply topurplejuicy

i have the sore stomach now, no ndt....food intolerances and hashimoto's go together. A bad stomach, is leaky gut, with autoimmune disease. Also, autoimmune gastritis is common..all can be put into remission, often for good.

i tried it for a year and the next times, several months..the hashi's flare up, took 8 months to clear up..before the trembling, heart racing and diarrhea stopped. I believe it really flared up my stomach..so yes. Lost 2 years of my life to ndt..being told it was the only way i would do well.

If this started or flared, when on ndt, then i would not wait for labs..the whole point is to feel better, not have a good looking labs. Labs do not correlate with symptoms often. At your dose, your ft4 will be low, possible TSH suppressed...focus instead on healing your gut and getting rid of the hashi's. This is what i am doing. I have not felt well on any thyroid med or replacement.

purplejuicy profile image
purplejuicy in reply tofaith63

wise words thank you. i guess I've been so fixated on getting the thyroid and levels ok that i forgot about the autoimmune protocol for a bit (even though i shouldn't have as it's the most important part of it) doesn't help that dr's say you can eat what you want...bad bad advice. i've been gluten free for about a week now and intend to stick with it - do you follow the AIP diet out of interest? i really struggled to get enough calories in with all the restrictions and not enough to prepare all meals right now which i know was making me feel worse.

could you tell me your protocol for gut healing please?

gluten/grain/dairy free?

i take acv with apple juice and water everyday, will start on the adrenal cocktail tomorrow too with pink salt, take a good multi-vit, iron, extra strong probiotic, zinc & mg at night, 4-6g of vitamin c, l-glutamine powder in the morn before a hot lemon & ginger water, b12 & vitamin d spray, digestive enzymes with ox bile before meals and then trying to eat as clean as possible but the diet I'm finding hard to be strict with right now :/ i mean i don't eat fish & chips and rubbish like that but as i said, I'm struggling to get enough calories for energy so eat on the go from health shops which might be a bag of lentil crisps or a bounce ball which have whey & nuts in. just wonder what your thoughts were on what food to absolutely avoid and if you eat any grains, nightshades, nuts etc?

i know there is something up with my stomach, it's high up underneath my breastbone and is more noticeable after I've eaten. getting reflux too which is new :( i think my GI specialist wants to do an endoscopy as a next step anyway so we'll see.

so you don't take any thyroid replacement for your hashi's now then??

faith63 profile image
faith63

I am so glad that you have an interest in self healing and getting rid of your immune system issues and leaky gut etc..most here have no interested and i just keep my opinions about it to myself, on this forum, with occasional post, but never many replies

I have spent thousand of dollars on supplements and have felt no better, even when fixing my anemia and d deficiencies..so not getting to the root cause, yet doing supps, makes no difference..

Doctors are evil/dangerous and i avoid them, at all costs!

The reason you feel bad upon elimination of food, may be detox or withdrawal, not not enough calories at all..just read an article by mark hyman and posted here about it. also, you must stop cross reactive foods like corn, rice, oats..all grains. Some say quinoa is ok, some don't or millet. Don't even count calories..just eat when hungry, but good foods.

I have made fried fish with arrowroot starch and it was wonderful! Ships, if potato are out, but you can eat plantain chips..i have just learned all of this new ways of cooking..all AIP..

i am off all nuts, nightshades, grain, dairy now..for 30 or more days..

i am using the Autoimmune paleo reset..with Mickey and Angie..google it

I have been scoped 3 times since this started and they found duodenitis..inflammation of the duodenum.

yes..i am on t3 only ,as i don't convert to t4 well.my whole body has gone haywire. I am missing pituitary hormones like cortisol and groth hormone, that have not been properly addressed..i have pituitary damage, that occured when i developed hashimotos.

purplejuicy profile image
purplejuicy

Yeh I'm due to graduate I'm naturopathic nutrition this summer so have focused on food for healing all sorts ailments. I've only just discovered Hashimoto's though and it's been a bit overwhelming making such big changes so haven't been as strict as I should've been but I'm trying.

Ah yes I like mark human and I've bought the autoimmune paleo cooking book by Mickey but haven't used it at all really. I've got the AIP lists in my kitchen, bedroom & diary in my bag for when I'm out but it's been a really tough couple of months I've been slack. My Nan died of cancer last week after a short battle, reunited with family I haven't seen in 6 yrs, bf issues, knee injury which I'm going for surgery in less than 2 weeks, final month of college so tonnes of revision & essays to write but with all this plus added health scares every other day, I've not done a single thing :/

I'm sorry to hear of your tummy issues and pituitary - how did you find all of that out of you avoid doctors at all costs out of interest? I completely agree as had awful experiences and feel like I'd be a better dr than most I've seen but I still have that feeling of needing to be reassured by a 'professional' as this is all scary, especially when self medicating. Do you self medicate with t3?

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