What now...any ideas?: Ok return of the crazies... - Thyroid UK

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What now...any ideas?

75 Replies

Ok return of the crazies ;)

So I stopped taking t3 and am now taking magnesium, vit c, b vits, iodine, probiotics, selenium and zinc. I took my temperature and found it is low (35.8 - 36.4 C) despite my feeling too hot all the time?

After finding stuff about raising temps via t3 I figured I would try again, so I attempted twice to begin on miniscule doses every 3 hrs as per the Wilsons protocol.

Every time by day 2 I had a RAGING migraine and heart palpitations. I took potassium...little effect...stopped t3 straight away and back to normal within 24 hrs.

The problem is after reading stuff on here about t3 being the only way to reduce the mucin swelling, I do not know what to do because I can't seem to tolerate even a tiny amount of t3...

My other option is, is it possible to have the myxedema stuff and swollen tongue, poor circulation etc from adrenal fatigue? As in, if I could repair my adrenals, would that all go away? I obviously have adrenal fatigue because I found this list comparing that with hypothyroid and I have symptoms of both.

So I checked that out and discovered DHEA and pregnenolone seem to be the standard for adrenal issues, and mixed opinions over cortisone.

I need vit d3 as well don't I?

Oh and I am upping my protein because I realized it's way too low.

Sorry for this long blah. It's all stumbling around in the dark at the moment.

I want to make the best decisions, I don't know how urgent it is to take drastic actions because I have no actual idea if I have always had thyroid problems, only got them in the last year after my starvation complications or don't even have thyroid problems and just have adrenal problems...?

Any ideas would be mega mega appreciated, thank youuuu!!!

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75 Replies
Justiina profile image
Justiina

How much and what type of protein you eat?

Fixing adrenal glands you need balanced meals 4-5 times a day.

You might have burned off your adrenal glands which affects thyroid or the other way around. You need certain amount of cortisol to thyroid hormones to enter cells.

But if you don't have enough thyroid hormones then adrenal glands try to step in and compensate the lack of thyroid hormones and boom you burned off you adrenal glands.

So it can be either way for you !

Have you had the cortisol saliva test?

in reply to Justiina

Either way? Urgh... no I haven't had the saliva test...how do you get that and what does it mean exactly? As in, what would the results mean in terms of treatment?

Thanks so much xx

in reply to Justiina

Oh and I eat eggs, goat cheese, nuts, avocado, whey protein isolate. I am working up to about 130g a day (I'm 150lbs) from a previous sorta up to 50g and usually lower average.

Which I know is bad...I have always had digestive trouble from eating more protein. Fingers crossed it will be different this time!

Justiina profile image
Justiina in reply to

Do you take digestive enzymes? I use enzymedica products.

Saliva test would tell what is the state of your adrenal glands. For example I was low throughout the day when you are supposed to be high in the morning so you will have enough cortisol for all day.

Last test I took showed normal function , high enough in the morning and during the day. All I did was had proper diet, cutting sugars and processed food.

I ate 125g carbs and approx 50- 60g protein and unlimited fat / day. ( 1-1.5 g protein / every kilo you weigh. I started weighing 47 kilos. Went upto 60 in 6 months and now back know to 54. Same diet all the time.

Edit; too much protein will cause adrenal issues for unhealthy person.

in reply to Justiina

Oh ok. I will maybe not have quite that much protein then :)

Just goes to show thewhole calories in calories out thing is utter nonsense!

I take lactobacillus acidophilus capsules, 1 a day. Does make a difference to my digestion. Perhaps I will look into that cortisol test. Thanks! Xx

Justiina profile image
Justiina in reply to

If you are active you can eat a bit more protein. But if you suffer digesting them then don't push it.

Too much protein might make one constipated, anxious, palpitations, insomnia etc.

When increasing protein do it 5 g/ week to level you can tolerate. Like start 50g / daily , next week 55 and so on. Good luck :)

in reply to Justiina

Thanks, I'll do that :)

Hello superparrot,

Why have you stopped the T3? It is very early days still (a month?) and thyroid hormones take ages to rebalance. Symptoms can lag behind good biochemistry by up to 6-8 weeks. Have you got recent thyroid hormone test results that you can post?

In a previous post your results showed no antibodies but T4 was slightly under & TSH slightly over, you described Myxoedema and a swollen tongue and now your low temperature would indicate a need for thyroid hormone replacement.

If you've been previously anorexic your cortisol levels will be low as the adrenals are our stress glands and with overuse, eventually become depleted. Also you might be suffering blood sugar level issues which would stretch the adrenals further.

You need cortisol to indirectly help thyroid meds work along with healthy eating habits that includes, protein, fats and carbs.

You've done your homework and supplements sound good, although not sure about the iodine.

Do you think you took too much T3 too quickly?

Sometimes the one thing the body most needs is the one thing it finds difficult to accept. I had terrible troubles when I initially started on Levothyroxine.

Starting and stopping thyroid hormones will make you feel worse Superparrot. You need to persevere with something. It is unusual for someone with thyroid issues to start initially on T3 and especially without even a T3 thyroid hormone blood test. What about T4 with a little T3 added as a lot of people do well on this combination and it is one I shall be trying myself shortly.

flower007

in reply to

Thanks for your thoughts :)

I stopped taking because it just...didn't feel right. I actually felt more tired straightaway even taking like, 2mcg, and instantly crave sugar and stuff. Obviously I battled against the cravings and ate better things but felt nauseous and heart rate goes up to 95 resting even on that tiny bit. Then to top it all I couldn't sleep...it sort of feels like my adrenals are saying no because the t3 is exhausting them further, hence the cravings for fast energy (which I know won't help!) And all the rest.

I don't have any results other than the ones I posted before. The doctors think there is nothing wrong with me :(

I guess nothing has changed much by how I feels!

I didn't do T4 because everywhere I went people were saying it didn't work, even made stuff worse, so I thought I'd skip that but perhaps I'm just confused.

What's a good TSH level? Mine was 2.6 I think?

Thanks!!

lesleyjehan profile image
lesleyjehan in reply to

I do know that it can take 6-8 weeks for Levothyroxine to settle in your body. Also, it just might be that you are sensitive to the fillers in the drug you were taking and not the actual drug? Which would explain your instant reaction?

As I said before I have no medical knowledge but it was just a thought? take care

in reply to lesleyjehan

You could be right about the fillers, I had that problem when I had to take codeine for a while a couple years back after a horseriding accident. I was fine when they gave me pure morphine, went on to codeine and went crazy, lol. I had to stop when I was forgetting to breathe! I'm pretty sure it was the combination of weird synthetic ingredients. I swapped to white willow bark tincture and, problem solved. I recommend! Thanks xx

lesleyjehan profile image
lesleyjehan in reply to

I used to teach horse riding...many moons ago! XXX

Angel_of_the_North profile image
Angel_of_the_North in reply to lesleyjehan

Me too!

in reply to lesleyjehan

Oh really? What an awesome job! :) though hard work I expect.

Jackie profile image
Jackie

Hi What are your TSH, T4 and especially T3?You may not need T3 not every one does.Have you tried NDT instead so long as GT3 is low enough.

Jacklie

in reply to Jackie

The doctors think nothing is wrong with me as most of my ranges were basically 'normal'...

They didn't even test t3...!

My TSH was 2.6 and my t4 was 11.4 I think.

Haven't tried ndt as warned that I might become dependent, my goal was to get my thyroid to work by itself as I live in hope there's nothing irreversibly wrong with it.

Thank you for your reply - your time means so much to me. Xx

greygoose profile image
greygoose in reply to

I'm sorry, what do you mean 'might become dependant'? I bet a doctor told you that! They are such morons!!! And they Don't understand the basic facts.

If your thyroid gland is failing, you ARE dependant on thyroid hormone replacement, whatever it is. How else are you going to live? It's not the fact of starting taking it that makes you 'dependant', it's the fact that your gland can no longer make enough hormone on its own to keep you healthy.The medical profession is so very, very fond of putting the cart before the horse and confusing symptoms with disease.

What makes you think that you will be less 'dependant' on T3 if NDT makes you 'dependant'? NDT is basically T4 and T3. Do you think leaving out the T4 makes it less 'adictive'?

You have heard so many people say that Levo (T4) doesn't work because you are on a forum full of people for whom T4 doesn't work. If it did work for everyone, there would be no need for this forum. But think about all the 1000s of people for whom T4 only does work. You won't get to talk to them on a forum because they Don't need to be on a forum - except for Helvella!

Seems to me that before you go any further, you need to get some private testing done, because bumbling round in the dark like that is just going to make things work.

Get your TSH, FT4 and FT3 done at the same time, so that we can see just how much T3 you have, and if you're converting.

Get both sets of antibodies done - TPOab and TrAB - one might be negative but the other might be positive. Besides, you cannot rule out Hashi's on one negative test result, anitbodies vary, and they might just have been having a day off on the day you tested.

Get the saliva cortisol test done so that you can see exactly wht sort of shape your adrenals are in. You Don't want to be messing about with DHEA and pregnenalone if your adrenals aren't too bad.

Get your vit D, vit B12, folate, iron and ferritin tested so that you can supplement accordingly instead of just taking anything that seems like a good idea without knowing how much to take and with what. If you're taking magnesium, how do you know you Don't need vit D3? Too much magnesium can lower your D3. Etc etc etc Your vits and mins need to be optimal for your body to be able to absorb and use the hormone you're giving it. But if you Don't test, how do you know how much to take?

And stop the iodine until you've had that tested, because too much iodine can make things much worse. I know that the thyroid needs iodine to make thyroid hormones, but it doesn't automatically follow that if you give it more iodine, it will make more hormone. That's false reasoning. There are so many things that can make you hypo, and iodine can't fix everything.

Then, when you have all that information, you can go forward in a reasoned, ordered way. I know all that is expensive, but what price your health? Flapping around like your doing is likely to just make it worse. :)

in reply to greygoose

When I said about dependency, I meant that given my problem may be a temporary one, given my history, I thought replacing all my thyroid might be asking for dependency (if indeed such a thing exists which I am not clear about) whereas I have read about t3 alone being not dependence causing if used short term. So I thought I'd do the t3 cycling thing to get my temperature up but I guess I too was carting before horsing! ;)

My problem is not that I'm unwilling to get the tests so much as I have no job and am basically living off 50 quid a month after all other unavoidable expenses, half of that goes on supplements already and the rest goes on any travel I need. I'm writing ebooks to try and pull some income as I am essentially unemployable, but that takes time just like everything else. It's somewhat bleak. So that is why I'm scrabbling a little. If the nhs worked, that would be really really nice.

Maybe I could go back to square one and add small amounts of stuff in until I see changes. Maybe I ought to begin a little t4. Maybe I should walk into some lab and test my own blood! I'd happily do that if it was allowed.

It's a catch 77...

SilverAvocado profile image
SilverAvocado in reply to

SuperParrot , is the reason reason you can't can't work because you are ill? I am in that boat and I justify the costs by remembering how much money I am missing out on with every month I remain unwell, and how soon I will make up the the difference if I get better :p

If you are too unwell to work, make sure you are getting ESA, PIP, Housing benefit, Council tax benefit, Disabled Railcard, and a free bus pass if your region is as good about that as mine mine is.

greygoose profile image
greygoose in reply to

OK, I understand about the money - SilverAvocado gives some useful tips on that - but you Don't have to do it all at once, I just gave the list of steps to follow. And if will save money in the long run because you'll be doing the right thing, rather than things that are going to make you worse.

Yes, it would be really really nice if the NHS worked, if they did the right tests and gave the right treatment, but it doesn't. So, we have to do the best we can without it. But going back to square one and taking little bits of this and that to see if it works... that just doens't sound like a plan, to me.

Will your doctor not just test B12? Or Ferritin?

Or, if that's what you really want to do, start with B12, because you can't over-dose on that. Take about 1000 daily sublingual methylcobalamin, together with a B supplement containing methylfolate - not folic acid. And drop the iodine! You can keep the probiotics, though.

When you've been on that for a while, try the magnesium again. Followed by the zinc. One thing at a time, otherwise you won't know what's working and what isn't.

But, bear in mind that at some point, you've got to get the tests done. I would say that TSH/FT4/FT3 were the most important, the one's to do first. Followed by the vit/min tests. The others can wait.

in reply to greygoose

Ok thank you. I will have to see what I can do... sorry if I come across as a bit snappy, it's not intentional. It's just stressful having no cash flow and not getting any better and trying to hold everything together all at the same time. I wouldn't wish this situation on anybody! Thanks for your patience :)

greygoose profile image
greygoose in reply to

It's ok! Don't worry about it! Feel free to snap. lol I perfectly understand, but if I snap back it's because you worry me. I just want you to calm down, take a deep breath and start thinking things through. I get the impression that you're panicking a bit, there. :)

in reply to greygoose

Grey goose - so I can start yelling now right? ;) only joking. No really, all your advice is hugely appreciated, I do panic like an idiot over some things. Thanks for everything, honestly xx

greygoose profile image
greygoose in reply to

:)

faith63 profile image
faith63 in reply to

i gave my recommendations, with realizing we have spoken before. I so wish you could get the help you need and be going in the right direction. It could takes years to recover from the anorexia. Do you have a parent or anyone you can borrow money from? Is there a Integrative or Function medicine doctor near you?

faith63 profile image
faith63 in reply to

Also, i was not able to tolerate meds..it took me nearly a year to get to 90mcg of ndt. I had to break them in tiny pieces. If you have only been at it a short time, then you need to realize it could be a very long road.

in reply to faith63

Faith - I am currently living off savings my dad shifted into my account, it's about the max he can afford to give at the moment so I am eking it out. I seem to be a magnet for hopeless situations! I haven't actually heard of a function or integrative doctor before - certainly not around here! ButII'll Google that and find out more, thanks :) I guess everything has to be done really slowly. Why I can't make myself understand that I do not know. at least I'm not skinny anymore. Don't have to worry about snapping in half at least. And weirdly I think I am probably healthier now, in some ways, than I've ever been so good things can come out of apparently shitty situations. Take care yourself and thank you! Xx

faith63 profile image
faith63 in reply to

I hope it all works out for you..never give up. I too, have really bad luck.

SilverAvocado profile image
SilverAvocado in reply to greygoose

This is the perfect description of what what you you need need to do.

Also my consultant recently said to me, in a conspiratorial whisper, "That T3 you're on is a little bit addictive". I had an inner chuckle, yea, just like you're addicted to oxygen! This is just the kind of crazy thing they say.

I thought it was quite a cheek as this is the the woman who actually cut out my thyroid with her own hand, without batting an eyelid. Yet she starts whispering things about the medication needed to replace it.

SilverAvocado profile image
SilverAvocado in reply to SilverAvocado

Also meant to say, don't waste your money on extra supplements if they aren't what you really need. The blood tests GG lists, above, will tell you exactly what you need to do to better. And with each one of them, there is no alternative. If you have B12 deficiency, for example, you must build up that, and no other combination of supplements will substitute for that.

in reply to SilverAvocado

Thanks you are absolutely right as usual. Hopefully I can report a breakthrough at some point :)

Jackie profile image
Jackie in reply to

Hi It is definitely worth paying for a FT3 test. Blue Horizon do a finger prick test ,all DIY, quote TUK 10 for a discount.

Jackie

ticktickatick profile image
ticktickatick

Are you self-medicating? I won't tell you not to, but if you are having these side effects from T3, I would try to repair anything you can with over-the-counter supps first.

Work on your vit D3, adrenals, diet, sleep, etc. for a number of months. If problems still persist look at the thyroid again.

This approach helped me a lot because by the time I got a prescription for the thyroid, I had literally optimized EVERYTHING else so we KNEW the thyroid was still at fault.

Make a plan and slowly add things to the list. For example:

Week 1-2: Vitamin D3 10,000 IU a day.

Week 3-4: Vitamin D3 + B vitamins

It seems like a long time to spend 2 weeks just taking one supplement, but the regimented nature pays off in the end. It also gives you TIME to observe yourself and see how your symptoms change with each addition.

in reply to ticktickatick

Thanks and sounds like good advice to my non impatient bit of my mind (that bit is very small ;))

I figured I must be so depleted after years and years of dietary madness that I probably ought to throw everything in at once, lol! I think I do feel better on some level, a bit more alert if nothing else. I will get d3. It seems pretty key.

Your help is greatly appreciated, thank you :)

faith63 profile image
faith63 in reply to

Spend your money on the tests you need or finding a better doctor, don't waste it on supplements unless you know you need them..have tested deficient. I have spent thousands of dollars on supplements and even getting my iron and d up, did not help. If you are deficient in hormones, vitamins don't help at all.

faith63 profile image
faith63 in reply to faith63

i mean will not help your symptoms.

faith63 profile image
faith63 in reply to ticktickatick

tick..she doesn't even know if she is defiecent in this and i can tell you from experiance, vitamins won't take the place of thyroid hormone or Hydrocortisone. I think supplementing is a waste of money if not deficient.

in reply to faith63

Thanks, of course you're totally right and I hope I can somehow find the resources to get the info I need. I don't feel as though it is a waste to take some of the vitamins I am taking however as I have had an unusually lengthy amount of time with simply awful nutrition...it's basically inevitable that I'll be deficient in so many things...but I wouldn't expect that to take the place of hormones. I have felt some better after a few months of taking what I have been so that's worth it I think, but obviously you're completely right that it isn't going to do much for the hypo symptoms.

Thanks :)

faith63 profile image
faith63 in reply to

Have the doctors tested you for lacking nutrients and minerals? I hope so, as over doing it on supps, is as bad or worse than being low. If you metabolism is low, i surely would only take them 2x per week or so..because hypo's don't metabolise them correctly, they just build up. This is what i do, so i don't become toxic.

ScotsLassLondon profile image
ScotsLassLondon

I have very similar symptoms to you. And couldn't tolerate the T3 only. Within two weeks every joint in my body was crunching, I'd hurt my back, had joint pain everywhere and my muscle was dropping off me. So it wasn't for me.

The thing that really got me calmed down with all the other things you're taking (well done for taking them) was high dose B12. It calmed everything down. Also I found that taking the zinc specifically in the mornings calmed any palpitations down. (Zinc lowers cortisol).

I'm seeing a private doctor and am on very low dose of DHEA and Pregnenolone and it's working well. But that was because my testosterone and natural DHEA levels were on the floor.

I was sure I had bad cortisol swings through the day but actually the saliva test showed it wasn't that bad. So really I'd recommend getting those things tested properly as it may be that you need to soldier on with the supplements.

After overreacting to Armour and T3 only I got my doc to prescribe WP Thyroid. It has very few fillers. Completely unable to tolerate a qtr grain of Armour I was able to move up very gently with WP Thyroid.

I bought a pill cutter. And started with a qtr of a qtr. So a 16th of a grain. Seems tiny to most people but if I moved above that the palpitations were horrific. I soon knew when I needed to up it by how exhausted I felt or infact if I was a little palpitationy in the am I'd try and see if another 1/16th would help.

I'm now 1/8th short of 2 grain and feeling stronger each day. I have to take all the supplemevts you're taking. In particular the zinc and selenium and Vit C first thing in the morning as soon as I wake (before I take the NDT).

Also, you haven't mentioned iron...? Is there a reason you're not taking iron?

Good luck!

XX

in reply to ScotsLassLondon

Gosh thanks a million for your in depth reply!! You are very brave to be going through all this, I know how much it sucks now.

I haven't heard of WP thyroid...? Is that on prescription? I don't think I'll be allowed anything on prescription because apparently I'm fine and just need to "eat less and move more"!

Perhaps I just need to go super slowly.

I am taking iron, 140mcg twice a week. I was taking everyday but my red blood cell count was high so I figured less iron would be ok. Ive been taking iron for about a year now. I just got so used to it I forgot to mention, ha!

I really hope my situation is temporary, is that you too or are you expecting to take replacement forever?

Thanks :)

ScotsLassLondon profile image
ScotsLassLondon in reply to

No probs.

Yeah WP Thyroid is prescription.

My GP and even this private doc I'm seeing saw that my bloods were only borderline and shouldn't be such a concern. But I have ALL the symptoms of hypothyroidism and quite serious ill health that has no doubt resulted from it.

Turns out I have the DIO2 genetic mutation (on one side) that means I can't convert T4 to T3 properly. It also means you can't rely on the standard blood results as a representation of the thyroid that's actually getting into your organs and cells.

Highly recommend you get the DIO2 test as you could use it as a strong argument for treatment through doctor.

Also, how's your gut/diet? A lot of us have found great results through Gluten free and low carb diets.

X

in reply to ScotsLassLondon

Hmm, interesting about the DIO2. I guess taking more t4 wouldn't help there!

My diet is pretty good I think, needs some improvement but not a lot. I have never got along well with low carb, tried it 2 or 3 times doing all the right things and just couldn't cut it. However, I avoid gluten mostly now apart from the odd 'mistake' at weekends. It definitely made me feel better cutting it out. I also refrain from cow dairy and refined sugar. Eat lots of vegetables and right now I eat lots of fats (mono and saturated) about 30% carbs and the rest protein but I need to up the protein a bit. I only drink water. My digestion is way better than it used to be but I still have on and off bouts of diarrhea/constipation. This seems to be completely random and unrelated to what I eat. So yeah...thanks for the input. :)

ScotsLassLondon profile image
ScotsLassLondon in reply to

Sounds like you've made massive changes and are trying your best! That's all we can do. So well done. XX

in reply to ScotsLassLondon

Thank you! :)

ellemaereading profile image
ellemaereading

Hi i can give you my experience for what it's worth. I couldn't tolerate ndt passed 1grain switched to t3 couldn't tolerate 5mcg without huge issues palpitations sweating anxiety it was awful I was working with Dr p and he had me on all the vits and nutri adrenal stuff to support my adrenals but for me it didn't work. I only started seeing progress when I gave in and used cortisol for me it has worked but I'm still on it four years later and can't get off it but without it is don't think I would be still here as I was so ill before my treatment started.

in reply to ellemaereading

Thanks! That sounds a lot like me! Well I will keep cortisone as a backup plan if all else fails. I suppose its only as bad as taking thyroid replacement forever if you do have to carry on with that. Annoying though... I sympathize!

Did you have hypo symptoms, myxedema, circulation probs etc? If so have they got any better?

Good luck and thanks xx

Newday64 profile image
Newday64

I had problems tolerating t3 too when I started taking it (ended up in hospital with racing heartbeat that wouldn't calm down). I had to knock the dose back to 5mg per day and had to take beta blockers for a short time. Then, after about 6 weeks I upped it to 5mg morning & evening. 8 months on, I'm up to 30mg, split into 2 doses of 15mg. Feeling better now but it's been a gradual process including taking vit & mineral supplements & going gluten free.

Everyone on this site is a unique case & so we have to find a way that suits us personally. Keep going, find what works for you & things will get better :)

in reply to Newday64

Thank you, very encouraging :)

Maybe I will start really small. I was just concerned as didn't want to get dependent if it wasn't strictly necessary! I suppose I just need to give it all time. I have always had reynauds symptoms though not diagnosed, I wonder if I was always bad thyroid, in which case dependency is probably inevitable :( oh well if I could feel better that wouldn't be so bad I guess!

Thanks xx

Newday64 profile image
Newday64 in reply to

Yes super parrot, you hit the nail on the head. Being dependent on something that makes you well and independent is a small price to pay. T4 made me really ill, and because I'm not overweight a Dr told me she didn't think I needed to take medication. 4 weeks later I fainted at work, ended up sofa dependent & needed help to get to the bathroom!

Now I feel well again, even if I am drug dependent. Be patient, find what works for you & don't give up. In the mean time, enjoy the little things in life you can do. All the best.

sara747 profile image
sara747

Hey. I commend your initiative. I've not tried thyroid hormone but had about 30 hypo symptoms last year a TSH of 6 and t4 and t3 that were about 11 and 4.5. Not ideal. My antibodies were over 1000 and cortisol levels consistently low. Like you I did a stumbling in the dark process and after discovering also my vit d and b12 and iron levels were very low began a list of suppliments.

Vit d3 sublingual

B complex

Selenium

Zinc

Vit c (soluble without aspartame)

Omega oils

Iron - slow release

Magnesium

And started a simple protocol to repair adrenaks. Borage and licourice tincture morn and night in water.

For leaky gut - l glutamine powder in water when no food consumed for at least half an hour. Morn and night.

I waited 5 months for an endo appointment through nhs and also cut out gluten and wheat as fully as I could along with caffeine, alcohol, dairy and soy.

Started to cook with coconut oil and put it in smoothies. Kept eating regularly small light leaks with good protein that is clean organic where possible and upped my intake of whole foods.

AlSo removed regular perfume use and changed household cleaning products to green ones. As my oestrogen levels were a bit high too.

I say all this like I am a saint. I did have slip ups. Occasional coffees, a bite of pizza, odd glass of wine and forget some suppliments after receiving a powerful healing as I felt so good after!! But this was the general aim.

About 25 - 28 of those symptoms went. The dry shiny puffy hands, Brain fog, bloating, total exhaustion, dry skin. Red peeling face, v dry blurry eyes, broken nails, hair loss, super dry hair, stiff knees, back aches, constipation, double heavy periods, anxiety, depression. I still suffer cycles of worsening symptoms like dry hair, eyes and some tiredness but feel a whole lot better. These dips are more noticeable when I stray off the protocol or mid cycle.

The Endo eventually saw me and my recent panel and said she will not advise me to take thyroxin yet as the blood panel had improved. I'm not saying you shouldn't or I won't one day but I am doing my best to feel my way to better health with a holistic approach. Accupuncture and homeopathy didn't heal the antibody situation or symptoms but the healing certainly gave me an incredible energy boost and improvements that go beyond physical.

I'm not sure if there are ones on this list you'd like to add but make sure they are gluten yeast and filler free. Also you can take vit a and glutathione.

I don't think this protocol has to be for life. Just a real gradual health repair 6-12 months and then see where all levels are and moderate maybe to Multi pill if possible. Another thing is aerobic exercise or gentle exercise should be built in gradually - something I've not done any of but should snd this will help the oxygenation process and metabolism. Some would also say add coq10 and anti oxidant. What I do with those is alternate with some of the other less integral vits.

Drink plenty of filtered water. Distill out the chlorine if you can. Use a natural deodorant and soaps. Where possible. Do not bathe in highly chlorinated water.

Enjoy sunshine and make a great mental shift to step out of worry and anxiety. And do what you can to embrace the condition as a sign post to elevate your body's vibration - see it as a gift not a curse - though hard to some days!! Also change or remove any stressful or toxic relationships. The healing started that process for me automatically. There was a shift inside. This is also key to keep yourself and your healing process protected and optimised.

These imbalances in hormones and gut health take time so be patient and make good small steps. It probably took years to get out of balance so may take a year or two to rebalance but it's def worth trying a natural protocol in my opinion. The ENDO was pleasant and happy with the progress.

Sorry can't be more help on t3 opinion. I guess everyone has different reactions. I think you have intelligence in your body that you must listen to. It will usually tell you what's good or not - and that's a very personal journey. which is why this journey is widely experienced although many themes of help reoccur.

All the best - happy healing!

:)

in reply to sara747

This is such great info sara747.

I wish I had taken the time you have to understand your illness and approach it in such a sensible methodical way, allowing you not only to heal but learn along the way.

I have done so much learning in the last four years but all in the wrong order and your protocol is definitely the one I should have followed.

There is a large school of thought that healing the adrenals and gaining optimal nutrient levels will help the body to accept new hormones introduced and cure a lot of other indirectly related illnesses/ailments.

Thank you for sharing such an indepth overview of your health regime. It has inspired me to reassess my own.

Flower007

in reply to sara747

Thank you! That's really interesting about borage and liquorice, never heard of using those for these purposes. I'm so glad you're feeling better!! My regime sounds very similar to yours actually ;) I go for a short walk each day and only use natural products, everything else smells horrible to me, too chemical!

My antibodies are actually fine so that's a plus, but I have swapped to oats instead of wheat mostly and root veg as my main carbs and only eat "bad" stuff at the weekend occasionally.

Hopefully we can both get stronger with time :)

Happy healing to you too! Xx

sara747 profile image
sara747 in reply to

Yes they are. And the only additional point was to confirm adrenal health importance :) at least to be in normal range or above 450/500 ideally :)

Esp in women who have to use cortisol for their testosterone - unlike men !! So we deplete adrenal function in our modern charging round lifestyles faster - we are designed to be strong but not super women ! As is demanded of many of us - my sons four years of sleepless nights deprived me of stable adrenal function. I had no idea I was on such a slippery slope as following years were just as stressful. Anyway :) as you say - here's to Healing and get all the healing you can find. Internal suppliments and external bio energy if you can - it has helped me when low enormously. Take care.

Sara x

faith63 profile image
faith63 in reply to

i hate to tell you but, gluten was a zero on my tests and oats is a 3!!! I can eat wheat , no oats..you really don't know unless you get testsed. We think we are eating right and it is wrong for us. Also am sensitive to Walnuts..go figure. Before you know it, you are obsessesd with diet and other issues start.

lesleyjehan profile image
lesleyjehan

Hi, I'm sorry I have NO answers for you really just what happened to me. I am in no way qualified so check things out. For around 20 years I suffered with my legs swelling off and on but the last 5 years they were swollen all the time and sooo painful. (I have diabetic neuropathy too,) my legs didn't pit either. Long story short, due to many complex health issues I was referred to a teaching hospital where they wanted me to lose weight so I went on a diet and lost 6stone. Because I was doing soo well the dietician put me on a tablet for my diabetes called Canagliflozin, she said it would help by excreting 200 calories per day through my urine. Well, my weight loss has continued BUT since taking this tablet my swelling has DISAPPEARED! In the past I'd tried water tablets with NO effect at all. I think this tablet is a wonder drug! I hope this helps

in reply to lesleyjehan

Thanks, I'm glad you're feeling better! I don't know if it would be advisable for someone not diabetic to take that, but it's certainly a good thing for all us here to know about, so thank you :) I wonder what the active ingredient is?

lesleyjehan profile image
lesleyjehan in reply to

How would I know what that is Superparrot? Complete Numpty here!

in reply to lesleyjehan

Hehe I don't think you're a complete numpty :) I might research that and see if it says anything anywhere. They do try to keep these things top secret! I hope you keep feeling better xx

sara747 profile image
sara747

Thank you flower :) that's really great to hear. ITs not been easy as you really are left in the dark and maybe I was 'lucky' enough to be out of work - to do loads of research although it's mind boggling - terrifying at the beginning. So unsettling and the last thing you want to do is go through a minefield of info when you are down and your brain hurts! But lack of options and 0 gp help was all I had. And although it frustrated my retired medical father - who also has Hashimoto's - I felt I couldn't just take one view on healing to be via nhs for life. So I'm doing what I can and I think mindset / belief plays a big part ...

Cortisol levels went from 250 to 417 (again some of this was the healing after no thanks to a Synacthen test that left me very ill chronically fatigued) and tSH went down one, t4 and t3 up 2 - so it may be a slower road but it's worth trying at least it's down to how you feel as much as anything and I do believe the body has the power to heal itself and reverse conditions. Bringing the right natural energy in the body is a great start and with nutritional support and elimination of hurtful things which perhaps we can no longer tolerate through gut sensitivity or liver toxicity - if chronically fatigued and adrenals struggling it's easy to go marching on into a downward spiral ... That's really what happened to me. If your bedroom or house gets in a mess you may as well roll the sleeves up and start cleaning the rooms up one by one. For a while it looks like no progress and then gradually toward the end it all comes together. I think that's how it is with the body - we are used to stress - rushing - instant fixes - but unless you are Mary poppins it's glinv to take a bit of effort and time but if you keep hoing - you get there - and the results are worth it. Bad analogy but you get the point. I'm still on a path and no idea how things will unfold but I'm getting new panel this July then again in December and I do believe if I continue to repair, cleanse , be mindful but not fanatical - careful but relaxed and listen to my body if I eat grains or dare to have a coffee - then I will know how to keep the right balance. It's hard to make sweeping changes at first. I was guilty of stuffing food in my mouth without always sensible choices. Dehydrated. Drinking coffee and wine. Had the odd cigarette. Ate wheat a lot as my son loved it - Italian food. French. Bread and cheeses. And spicy curries. In fact all the things that can cause inflammation!! And there I was in an exhausted depleted inflamed mess!!!

Another thing I found useful if aloe Vera juice. The idea is to keep high acidic foods away and mIntaun good gut alkaline and acid balance. And if like me you have sensitive digestion it was worth doing a food intolerance test - and maybe take digestive enzymes.

I also did a Genova hair mineral test and worked out the ratios on line myself with a calculator. It totally confirmed the imbalances and a need to balance zinc and magnesium. Among a couple of others.

It's ALot to absorb. What a pity the GP can't give anyone a leaflet or booklet with this info on. I had to push hard to get the full panel done and often it would take visits and phone calls and asserting myself as they did not get the HPA or HPT axis connection. So refuted the need for cortisol and had 0 nutritional advice. Have written a summary for my gp who at least wasn't dismissive like many of them are (offering me Prozac and the door!!) so it's been a journey. Just wish everyone could get the info they need upfront and save them pointless worrying and searching for answers. It's also not cheap to do all this and if Like me you live hand to mouth - my child comes first and ive had to wait sometimes to top up vit supplies - just a shame we can't get natural health care on nhs! I'm sure It would save money long term... And make happier people :)

in reply to sara747

Natural health care on the nhs! If only!! You have been very pragmatic and patient I think. Aloe vera definitely agrees with my skin, so perhaps it would agree with my insides.

Doctors have 3 solutions: Prozac, paracetamol and green leafy vegetables. They think these are the cure for anything short of losing a limb or something equally drastic.

Thank you for all your thoughts and experience, you're a gem! Xx

sara747 profile image
sara747 in reply to

Haha that's funny but true ... and they tend to resist domeone taking their health into their own care -- and test management but coming from a medical family of sorts they don't seem to intimidate me so I like so many now don't sit and wait for their answers. Having been let down in the past especially.

Ironically green leafy uncooked veg can be counter productive !! But I guess it's in pharma interests for ignorance to reign.

Taje care!

X

in reply to sara747

Kudos to all that! You too xx

Heloise profile image
Heloise

Lots of good questions you are asking but difficult to answer. This man thinks you can get your body to heal because he believes most symptoms are because your body is reacting (very well) to your current situation. Stress reaction causes a lot of it so finding that cause is the big question. I think you will get a lot of his video.

youtube.com/watch?v=T_Re4ja...

in reply to Heloise

Thanks heloise, that is really helpful and interesting. Xx

Heloise profile image
Heloise in reply to

Well, when you have more time (you have had a lot of information to sort through) you could try watching it and take notes. I do think there is a basic understanding given that may let you see which areas may apply to you. Very pointed warnings about all pharmaceuticals including aspirin to my surprise.

in reply to Heloise

Aspirin is poison!! As far as I'm concerned, nothing needs to be modified as much as it is in conventional medicine. The lists of side effects on a lot of standard drugs are appalling! I see no need to go beyond plants, natural compounds and logic personally. But then they don't want to make people healthy do they...they'd have no one to sell drugs to then...

I can see you're in a bit of a lather about this, Super P. But the first thing you need to do is breathe.

You need to keep a health diary (if you don't already). Absolutely only change one thing at a time. And not by huge amounts.

Those blood tests you posted need to have their ranges with them for us to make much of them: every lab measures differently.

Not only thyroid meds but also supplements of all kinds need to be increased gradually and it takes time before one feels the benefit. If you want to take a lot of supplements at once I'd say get a good multi-vitamins + minerals, where the doses of each aren't massive. (I know there are some here who disagree with that approach.) But big quantities of individual supplements can deliver a powerful wallop to your system.

If you need thyroid meds then there is (as someone else said) absolutely no point in stopping and starting them. You need to trial them for at least 3 months. Starting on a low dose and building up gradually to the dose which is your 'sweet spot'. You don't mention what dose p.d. you were taking. Is that in a previous thread? Or can you provide it here, please, to save us hunting for it?

In my experience, no thyroid meds will work well until one's Adrenal glands are returned to good form.

in reply to

I started by taking 6mcg twice a day, realized after day one that was a bit much and went down to about 2mcg 3 times a day. Then the headaches...I stopped for a week and tried the next week, back to 2mcg three times. Day two migraine from hell. Stopped again and left it a few days. Did the same thing only this time 2mcg twice a day...migraine was back...with a vengeance. And heart palpitations. It just doesn't like me.

But I think you summed it up in a few words there. Adrenals. Need. Fixing.

Sorry for my drama. I think I think too much ;) I'm breathing. Thanks.

faith63 profile image
faith63

I have been thru this myself.

If you are Hypothyroid you cannot be off meds..if you have Hashi's your Gland will stop working. For those who cannot tolerate even tiny amounts of thyroid meds, the issue is usually with low cortiosol from a pituitary cause or adrenal gland issue. Sometimes Hydrocortison and Thyroid meds need to be taken together, until your body is able to make it's own cortisol, if it is ever able. The adrenal glands need thyroid hormone to function well. With a pituitary issue, you are stuck on Hydrocortisone for life..pituitarys don't regrow like Adrenal glands. Your doctor should be aware of your symptoms and low cortisol and should have been doing Cortisol testing. Excuse the errors..lack of caps and mispellings!

in reply to faith63

It's kinda bizarre that we're happy to rely on food and water for the rest of our lives but not medication! I guess we always get given this gloomy picture of being shackled to substances that only 'weak' people have. And it's not like that at all, these are essential elements that everyone needs and helps to keep anybody strong. I think there's a lot of judgement of 'weird' people with 'special' needs, when really we're all weird people with special needs! We're unique people with individual traits and requirements.

Anyway sorry went off on one there. Spelling mistakes - I am a spelling mistake ;)

faith63 profile image
faith63 in reply to

I am ok with having to take a hormone replacements, like thyroid meds, but it is important, at least for me, to know why i have this deficiency. I am not ok with taking antidepressants, nerve pills etc.. Hormones tell the entire body to operate coorectly. I have no doubt that lack of or imbalance of hormones are at the root of many..most mental illness and other disease. I just want to get to the bottom of it and treat that.

I am depressed and get anxious, but i am also swollen and in a lot of pain. I do not see swelling in the symptom list for depression and and anxiety disorders..see what i mean? Something else is wrong.

My spell check is no longer working..excuse mine too!

in reply to faith63

Absolutely, I guess I meant necessary medicine really. Most naturally occurring substances (provided they're not poisonous!) Seem to be okay, weird invented drugs seem like a mistake to me.

I wish you health xx

Muffy profile image
Muffy

If your adrenals a low, then T3 will cause the symptoms you had. Once the adrenal glands are working okay, then you can try the T3 again.

in reply to Muffy

Thanks! I think I have reached that conclusion. Back to the adrenal drawing board! :)

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