Coming to the end of my thyroid journey - Thyroid UK

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Coming to the end of my thyroid journey

cazmania7 profile image
66 Replies

Hi everyone,

I feel I’m coming to the end of my thyroid journey and am asking for any final suggestions.

I had RAI for Graves 2014 and nine months later became hypothyroid and very unwell. I’ve been sick since May 2015. Zero energy, debilitating fatigue and a general feeling of being unwell nearly all the time.

I’ve tired just levo, levo and T3. Liquid levo. Liquid levo and NDT. NDT mono. NDT and T3. I believe my endo will suggest trying T3 mono next but to be honest I’ve pretty much lost hope and do wonder if my problems lie elsewhere now despite having been utterly convinced that the key lies within thyroid treatment.

My TSH has been high, low, suppressed. Makes no difference.

I’ve had B12 shots, and iron infusion and taken supplements. I’ve tried gluten free. You fe tried anti depressants.

Initially was told in 2015 it’s CFS. Maybe it’s that and I just need to accept this.

Any suggestions welcome. This has changed my reality. I can feel it affecting my mental health. I just can’t handle feeling like this until I die.

66 Replies
Hookie01 profile image
Hookie01

Hi, i feel you.

I had RAI in 2018 due to graves and have been fighting to feel well ever since.

I lack in energy, always tired, ive got extreme weight gain, extreme bloating, and tinnitus if i try to raise my vit d levels. At the moment, if i try to increase my levo i just get all teary, more depressed and it makes my shoulders, elbows and feet hurt, so living on reduced meds at the moment.

I think at the moment though i have hit peri menopause which really is not helping!

Have you looked at your inorganic phosphate, calcium and vit d levels? My phosphate was under range when i last tested and calcium low. Its all linked to electrolytes aswell. Recently found out that RAI can deplete all 3 of these and make us hypoglycemic within 5 days of having RAI. Also have you had your parathyroids checked as having RAI can damage them also.

Other than that i really don't know what to suggest. But you are not alone in this, regret it so much but we can't give up.

Good luck.

cazmania7 profile image
cazmania7 in reply to Hookie01

Hi Hookie. Thanks for your reply. Sorry that you too are struggling. RAI is also my biggest regret! Not sure if have had parathyroid checked, assuming not. I’ll ask the endo about this next month. My Vit D is good, I supplement this. Not sure how I would test calcium and phosphate though, is this via a test I can get at blue horizon maybe?

Hookie01 profile image
Hookie01 in reply to cazmania7

i got it tested on a full blood count that my work Dr asked my GP to do so if you ask your endo im sure he can arrange it.

cazmania7 profile image
cazmania7 in reply to Hookie01

OK thanks. I’ll mention this. Just had a look at your previous posts. Looks like you’re on the magic roundabout too!!

Hookie01 profile image
Hookie01 in reply to cazmania7

yup and i just want to get off!! Had enough! I haven't tried NDT yet though as can't afford it but got referred back to my endo, got an appointment on 6th Oct to get T3 back. It just goes on and on doesn't it!! But others feel ok after so we must be able to acheive it???

cazmania7 profile image
cazmania7 in reply to Hookie01

exactly. The success stories give me hope and make me press on. It’s been an expensive journey!

Hookie01 profile image
Hookie01 in reply to cazmania7

all the answers seem to be in the US aswell, just reading about a lady who took compounded thyroid meds, but its in the US! Hate living in the UK sometimes.

cazmania7 profile image
cazmania7 in reply to Hookie01

At least if you break your leg here though you won’t end up bankrupt lol

Hookie01 profile image
Hookie01 in reply to cazmania7

this is true lol

lolajone profile image
lolajone in reply to cazmania7

Both are included in a ‘bone profile’ test

cazmania7 profile image
cazmania7 in reply to lolajone

Duly noted. Thanks lola. Wishing you well.

Sparklingsunshine profile image
Sparklingsunshine in reply to Hookie01

Hi

I was just about to mention abnormal parathyroid levels, that can make you feel crappy, my recent PTH was elevated and my calcium was low. I don't eat much in the way of dairy so I think mine is diet related. I've got to be retested in November. Have they ruled out parathyroid in your case?

cazmania7 profile image
cazmania7 in reply to Sparklingsunshine

Hi Sparkling. Parathyroid has defo never been mentioned so perhaps it’s something to explore. This endo does seem keen to help so really hoping he won’t chuck in the towel if T3 mono doesn’t work.

Sparklingsunshine profile image
Sparklingsunshine in reply to cazmania7

Hi

Its a long shot but I have Fibro and have been looking into Low Dose Naltrexone which seems to help a lot of people with CFS or Fibro, as well as many other conditions. There's a doctor with CFS who swears by it.

I'm not sure about getting it prescribed on NHS and as always we need to be cautious about online reviews but it certainly seems to help a lot of people like us who've tried pretty much everything else.

I know there's a Scottish pharmacy who can prescribe it privately after having an online consultation., I believe there's a big clinical study going in Sweden due to finish next year to see if LDN should be offered to manage symptoms in chronic conditions.

Geogeor profile image
Geogeor in reply to Sparklingsunshine

I believe LDN is being prescribed privately to assist with the symptoms of Long Covid, too.

cazmania7 profile image
cazmania7 in reply to Sparklingsunshine

Yes I’ve heard of this too. Someone locally takes it so may consider this also. Guinea pig territory though isn’t it!

Sparklingsunshine profile image
Sparklingsunshine in reply to cazmania7

Hi

Well yes it is but when you've tried so many things and nothing has helped what can you do? I've had Fibro since 2006, possibly longer. I've tried all the medications recommended by the NHS, painkillers, antidepressants, sleeping tablets, anti nerve pain agents, anti epileptics. They either didnt work or more commonly the side effects were worse than the illness.

I've tried acupuncture TENS machine, I've been to the pain clinic and had multiple steroid injections. I even went on a sleep course and did a group phone class for meditation and breathing exercises. My gravestone will read "well at least she tried ".

Any improvements have been from my own initiatives, losing weight, exercise, healthy eating and eventually pushing for thyroid meds.

As many of us have found with long term chronic conditions, we are not well served by the NHS. And once you've exhausted the conventional treatments and they dont work, you're left with trying out untested or off label treatments or resigning yourself to putting up with it and never feeling well.

We only get one life and I dont want to waste the time I have feeling crap and waiting for medical science to bother coming up with answers. Don't get me wrong there's a time for acceptance and coming to terms with this is just how its going to be, but I haven't reached that yet.

I hope the study in Sweden proves that LDN is another tool for people with health issues that don't respond to conventional treatments.

Hedgeree profile image
Hedgeree in reply to cazmania7

Hi cazmania7,

If you do get parathyroids checked by the endo make sure they check PTH, calcium and your vitamin D levels at the same time.

Mine were checked pre and post surgery, vitamin D and calcium low PTH high showing secondary hyperparathyroidism but think my problem will rectify after treatment with high vit D.

Best wishes.

cazmania7 profile image
cazmania7 in reply to Hedgeree

I will add this to the list! Thank you!

Hedgeree profile image
Hedgeree in reply to cazmania7

Yes worth investigating just incase.

Take care.

Hedgeree profile image
Hedgeree in reply to Sparklingsunshine

Hi Sparklingsunshine,

Do you know your vitamin D levels? I recently had my parathyroids tested post surgery and found PTH high, calcium and vitamin D low.

So secondary hyperparathyroidism but will rectify after high dose vitamin D treatment. So when you get retested make sure you get all three tested together; PTH, calcium and vitamin D.

Sparklingsunshine profile image
Sparklingsunshine in reply to Hedgeree

Hi

Its a bit weird, I had my calcium tested in June as part of an electrolyte profile and my calcium was low, below range. I queried it and was told they weren't concerned. In August I was on a phone consult with a GP not from my practice who flagged it up and said it definitely needed checking again and she ordered the calcium and PTH blood tests.

I chased up the vitamin D. My vitamin D was 89. This time calcium was low but in range. But my PTH was elevated. So I've got to be retested in November. I'm thinking its because my calcium was low in June that my parathyroid was elevated. I'm now taking 800mg calcium supplement daily which a doctor recommended. I dont eat much dairy so struggle to hit calcium RDA. I'm annoyed with my surgery that they were so dismissive.

Hedgeree profile image
Hedgeree in reply to Sparklingsunshine

I understand what it's like with a dismissive surgery; it's not good.

Thankfully the ENT clinic have been brilliant but unfortunately I wasn't very with it when they were discussing my parathyroid levels so only got the over range result for PTH and told others were low.

I was taking vitamin D but not enough of it as I'm not liking the taste of the one I bought. So I need to change to one that I like and also get more organised.

Take care.

Sparklingsunshine profile image
Sparklingsunshine in reply to Hedgeree

Hi

I've got an ENT appointment early October for my balance issues so maybe I'll see what they say. Thanks for the reply. You take care too 😁

greygoose profile image
greygoose

My TSH has been high, low, suppressed. Makes no difference.

But it's not about the TSH. TSH doesn't make you feel anything, and it's a very bad guide to thyroid status. The important number is the FT3. And your FT3 above is not that high. Have you tried it higher?

How is your cortisol? Have you had that tested in any way?

cazmania7 profile image
cazmania7 in reply to greygoose

Hi grey goose. Long time! I think that’s the highest my T3 has gone and I have to say it makes me feel jittery and gives me palps. Almost as if there is a second heart beat beneath my own which is elevated.

Yeh I did the saliva test and cortisol was low but I had a synacthen test which they said was fine and per usual they don’t see the saliva test of value!

Agapanthus1 profile image
Agapanthus1 in reply to cazmania7

If you have low cortisol but no underlying Addison’s, have you considered Paul Robinson’s protocol CT3M? There’s a great fb group he runs where you can get advice. He recovered this way & he’s very knowledgeable about all things thyroid.

I don’t know how old you are but adding sex hormones has helped me quite a lot -more energy, better sleep, bone & heart health etc-although it can take a wee while to get the full benefits. There’s some good Facebook groups for that too.

Wishing you have better days soon. I’m having other non thyroid related problems at the moment & can totally empathise as to what a bleak & lonely journey it can be. X

cazmania7 profile image
cazmania7 in reply to Agapanthus1

Thanks agapanthus. I believe Robinson recommends T3 at certain times of the day in alignment with the circadian rhythm? I’m of the view that if you need T3 so desperately it’ll certainly have some affect regardless of the time taken. I’ve tried T3 several times now and felt zero benefit at all so wonder if it’s linked to absorption (think STTM calls it pooling?).

My chap is an endo so guess he will be able to tell me if sex hormones are something I might benefit from. Certainly have no desire for this though lol barely enough energy to crack a smile never mind anything requiring exertion!

Sorry you too are unwell. It really isn’t fun is it. Draining. Wishing you well also.

greygoose profile image
greygoose in reply to cazmania7

I’ve tried T3 several times now and felt zero benefit at all so wonder if it’s linked to absorption (think STTM calls it pooling?).

I've never been quite sure what STTM means by pooling. But, T3 doesn't stay in the blood long enough to make much of a pool! 🤣

If you mean absorption at a cellular level, I'm not sure that would be the case with you because you said: I think that’s the highest my T3 has gone and I have to say it makes me feel jittery and gives me palps.

Well, I don't think it would do that if it wasn't getting into the cells. Hormone in the blood doesn't do anything. It has to get into the cells to have an effect. I could be wrong, of course, but that's the way I see it. And, if you did have an absorption problem with the cells, you would need to take very high doses of T3 to flood the receptors to get some inside. So, that doesn't sound like the right solution for you, does it. :)

cazmania7 profile image
cazmania7 in reply to greygoose

Yeh and my T3 levels would not increase either, I guess, so, who knows!

Agapanthus1 profile image
Agapanthus1 in reply to cazmania7

I’m no expert but from what I understand, CT3M is used to address cortisol issues that aren’t due to another underlying condition such as Addisons (which needs specific treatment). I think the premise is that you can’t utilise thyroid hormone well if you have low or high cortisol. PR often discusses ‘pooling’ & all things thyroid related, so you may find some useful info on his site. He went on T3 mono therapy to recover but discusses all treatments.

Oestrogen receptors are in every cell of our body, so can have a very dramatic effect on physical & mental well-being, not just libido which was he least of my worries when I started HRT. In fact, there’s a lot of overlap between low oestrogen, progesterone & testosterone & thyroid symptoms. I saw 3 ‘internationally acclaimed’ (!?) Endos & not one of them suggested or investigated hormone imbalances, despite me being menopausal. They only focussed on thyroid & adrenals. It has taken some time but I really feel HRT has significantly improved my overall health & it’s not now considered as risky as it was. Interestingly, I’ve come across a lot of thyroid disease sufferers in menopause groups, & a lot of them have found benefits too.

Thank you for your kind wishes, I hope you find something very soon that helps. 😊

cazmania7 profile image
cazmania7 in reply to Agapanthus1

Is that what sex hormones are, HRT? I did wonder if this was something I should be looking towards due to being the right age group and female. Symptoms fit with meno/peri so perhaps this is the right direction. I’ll try anything to be honest lol. Thank you!

Agapanthus1 profile image
Agapanthus1 in reply to cazmania7

I was the same (would have tried anything)! Start with the balance app for brilliantly written comprehensive advice & the fb groups are the MDHG & the menopause support group. You never know 🙏🏾X

PS It was Paul who suggested testing my sex hormone levels (they were rock bottom) & recommended HRT. He knows a lot about that too. Gold standard treatment is Utrogestan & transdermal oestrogen as this is the safest but it’s all on the balance app.

cazmania7 profile image
cazmania7 in reply to Agapanthus1

perfect. Thank you!

greygoose profile image
greygoose in reply to cazmania7

They said it was fine? They usually do! But, I've come to the conclusion that they don't really understand what they're testing for! Adrenals are even less understood than thyroid - if that's possible. Have you got results for all that?

cazmania7 profile image
cazmania7 in reply to greygoose

here are those results I posted them a couple of years ago

Saliva test results
cazmania7 profile image
cazmania7 in reply to greygoose

I guess I could buy the test again and if results are low again this really might need more exploration

greygoose profile image
greygoose in reply to cazmania7

I wrote a reply to this a couple of hours ago, but it disappeared!!! So, the upshot was, yes, best to get tested again, a lot can happen in a couple of years.

Relentlesssearch profile image
Relentlesssearch in reply to greygoose

Hi greygoose I wanted your opinion on this.

Everything I am reading in Peatfield’s book suggests that low cortisol can make thyroid medications either a. Ineffective or b. Make things worse. It explains that cortisol facilitates t3 access to the cell, this is the reason given for why low cortisol causes problems.

However, how can thyroid hormone make things worse if there isn’t access to the cell? Surely t3 is either in the cell, or it’s not. And if someone suffers negative reactions from t3 containing medications (as I do) then surely this suggests that the t3 is indeed getting into the cell, otherwise how come a reaction at all? I’m confused. I’ve come across many resources that site the same, along these lines:

Whatever you may be told, adrenal insufficiency in thyroid disorders is very common indeed and should always be considered at the onset of treatment. Failure to respond to thyroid supplementation, or actually feeling less well, is likely more often than not to involve the low adrenal reserve syndrome.

So, i’m confused… in the case where t3 is causing MORE problems (and over medication and raising too fast is ruled out) how can it be the adrenals if cortisol allowing t3 access is seen as the issue?

Edit: I may make this into a separate post actually x

greygoose profile image
greygoose in reply to Relentlesssearch

I think the key word there is 'either'. It doesn't say 'and', so it's either one problem or the other. Either the T3 doesn't get into the cells OR it does get into the cells and makes things worse. That's how I understand it, anyway.

Relentlesssearch profile image
Relentlesssearch in reply to greygoose

I see. So there may be enough cortisol for access, but not enough for whatever it is that’s going on these wretched cells…

greygoose profile image
greygoose in reply to Relentlesssearch

I think so, yes. Or else, like so many things thyroid, it depends on the person - we're all different.

cazmania7 profile image
cazmania7 in reply to greygoose

Thank you as ever for taking the time to reply and help grey.

greygoose profile image
greygoose in reply to cazmania7

You're welcome. :)

Lalatoot profile image
Lalatoot

Caz, sorry you are feeling so low. Your ft4 isn't even 50% through range. That would be keeping me ill. I need my ft4 at 50% and others on combo report that they need it at 60% or 70%. This is along with ft3 high in range.

Based on what has happened to me, I would suggest that you try to get ft4 over the 50% and ft3 in the top third of its range. Then stop changing anything. The body dislikes change and having to adapt. Like you I was very ill after RAI in 2015 and became all but bed bound for years. During that time my body adapted to running on very low thyroid hormone levels and things changed and rewired so the body could survive. Now that I am on sufficient hormones it needs time to re-adapt and rewire. Some things are being slow to return - I have been on a stable dose for 15 months with ft4 at 50% and ft3 at 72% - but I can go out, can have a few days away and I am more like me. There are lots of things I can't yet do but I try not to focus on them as I have already made so much progress.

How did I know when to stop changing doses? I guessed. Over 2 and a half years I slowly changed levo and lio doses slowly and methodically. My aim was to get both ft4 and ft3 to at least 50% through their ranges and then see. On 100mcg levo and 7.5 lio I ended up at 50% and 72%. Having experiemented over the years I didn't think further changes would be beneficial and that I had to now let the body adapt to the hormone levels I had. Of course my TSH is now undetectable.

I hope that things improve for you and send hugs.

cazmania7 profile image
cazmania7 in reply to Lalatoot

Thanks lalatoot. My understanding was that increasing T3 lowers T4 so how one gets them both in the upper limits is a mystery. I did tinker a little solo once but find the higher the T3 the less stable my heart is! I’m glad you are better though! It gives one hope.

Lalatoot profile image
Lalatoot in reply to cazmania7

Taking T3 has lowered my ft4 from 60% through range to 50% through range on the same dose of levo. Adding 7.5mcg lio has however increased my ft3 from 16% to 72%.

Its all a bit of a juggling act.

pennyannie profile image
pennyannie

Hey there Caz :

I was only thinking of you the other day and wondering how you were doing.

I'm so sorry you haven't found any relief :

So just T3 left to try, and presume you have gone privately ?

I had to find ways for myself and totally ignore my TSH reading which is stuck down at 0.01 if I've any chance of feeling better than how the NHS left me.

RAI is known to trash vitamins and minerals and I now need to keep these supplemented on a regular basis despite my RAI being back in 2005 as my body hasn't been able to regenerate and repair itself sufficiently.

RAI is known to trigger Sjogren's and fibromyalgia type symptoms - but no one with the NHS mainstream even acknowledges this - I was just referred to as a conundrum when I needed help and have managed better by myself.

RAI is known to be taken up, to a lesser extent, by other glands and organs in the body.

I also started taking adrenal glandular long before I started fighting the NHS for thyroid hormone options and found these eased my ever so sore and achey achey lower back and still take them daily.

I also had the Short Synacthen Test and told I was ' ok ' and then read that the test is not sensitive enough and only useful to help diagnose Addisons Disease.

All as detailed in the book - Your Thyroid and How To Keep It Healthy by Barry Durrant-Peatfield who wrote this book to enable patients to advocate for themselves, which I'm sure I've recommended to you before.

I'm self medicating with NDT and it's now over 4 years and I am much improved - my brain is back but some days, like today, I feel like the Tin Man as I'm very stiff and ache in all my joints and think this weather has determined I'm back to 2 pairs of socks a couple months earlier than usual.

Fingers crossed for the next trial of T3 only :

cazmania7 profile image
cazmania7 in reply to pennyannie

thanks penny Annie. I do often think of you down in Cornwall. Hope the weather there is nice today. It’s nice here in Devon. I’ve washing drying on the line and had the windows open wide for a bit!

pennyannie profile image
pennyannie in reply to cazmania7

The sun is trying to burn through though think it's lost it's power - sounds a bit like me today !!

Wishing you well :

Relentlesssearch profile image
Relentlesssearch

Hello,

So sorry you are suffering, it’s awful and you’re very brave, but I believe that you can be helped.

For whatever it is worth this is my input as someone who worked in CFS. CFS is not a meaningful diagnosis, it is a label code for “we don’t know what’s wrong with you.” If you go down that path, you’ll find fewer answers and the label itself may fog up the truth so you’re more confused than ever what’s causing what, my advice is to steer clear of CFS and similar labels. Those labels are to help the doctors much more than to help the patient.

I am also feeling very unwell after many, many years of this, so I empathise more than you can know. I have tried levo, levo + t3, t3 alone and now NDT. More or less, they all produce the same result for me. I think there is something significant, and sorely unrecognised about adrenals. I am only on the brink of discovering this myself, so I don’t speak with huge authority but here is an extract from famously successful and loved by thyroid patients, Dr Barry Peatfield’s book “Your Thyroid And How To Keep It Healthy.”

Ignoring the necessity of providing adrenal support - that is, ensuring the adrenal glands can cope with the strain [of thyroid medication] may cause stress. T3 has to be taken up by receptors within the cell walls to be passed into the cell. This uptake is degraded in adrenal insufficiency; the receptors become dormant or may disappear or become resistant. In this situation, even if T3 is available, the system may become toxic if it cannot be used properly… the failure of thyroid supplementation to restore normal health may well be largely down to the adrenal problem. This is scarcely ever considered by physicians.

The best way to assess adrenals, as far as I know, is a blood am test before 9am, and a 4 point saliva test with DHEA. I’m also inclined to believe that the same will apply to adrenals as it does to thyroid hormone results - there is normal and then there is optimal, so seek advice on interpretation.

I’m only one step ahead of you in this, but all i’m reading is that thyroid medication is essentially useless (and sometimes actively worse than nothing as in my case) in a system with low cortisol. It sounds to me as if it’s like being in 2nd gear and sticking the accelerator flat to the floor to get speed up but you can’t get anywhere and the engine simply struggles and protests more, speed beyond a certain point is impossible. Without access to cells via cortisol, T3 will not be able to help you. I think i’ve got all of that correct.

Something worth looking into before joining the back of CFS queue in any case 🙏🏻 Xx

cazmania7 profile image
cazmania7 in reply to Relentlesssearch

Thanks relentless. Indeed STTM refers to this also so there must be some truth behind it. I bought some adrenal support ages ago but didn’t give it a good go. Perhaps I’ll try. I think it was cows adrenals or something really obscure and recall it giving my neck acne if I remember rightly. I did have the early blood test and again nothing of alarm but I know that the results are open to interpretation anyway.

Relentlesssearch profile image
Relentlesssearch in reply to cazmania7

Dr Peatfield’s book:

Whatever you may be told, adrenal insufficiency in thyroid disorders is very common indeed and should always be considered at the onset of treatment. Failure to respond to thyroid supplementation, or actually feeling less well, is likely more often than not to involve the low adrenal reserve syndrome.

Re. Results, I don’t think you need Addison’s to warrant adrenal support. I think a low adrenal saliva is enough + more important are your symptoms that mean a great deal!

Re. Bovine supplement - yes in exactly the same way that metavive is thyroid support, or NDT in higher concentrations of pig thyroid, adrenal cortex is made from part of the adrenal gland of a cow.

Good luck. I know it’s awful but we will surely get there eventually x

cazmania7 profile image
cazmania7 in reply to Relentlesssearch

You sound like you are well on the road to your own recovery and have an excellent understanding. I like the way you put it in simple terms. Very helpful for my simple brain! I so miss feeling sharp and on the ball. Instead am clumsy and don’t “get” jokes and feel like a zombie mostly!

Relentlesssearch profile image
Relentlesssearch in reply to cazmania7

I know the feeling… it’s wretched. That’s kind of you to say! Truthfully I am in the dark about a lot of stuff, but I spend all my free time researching. I am determined to get better, and will honestly just die trying if I don’t succeed 😅

I believe we can both be well - it seems a biological inevitably if we get all our ducks in a row 🦆

Relentlesssearch profile image
Relentlesssearch in reply to cazmania7

Hi! I’ve done some research this morning in cortisol & T3. I have incorrectly stated above that cortisol facilitates T3 cellular access, but this is actually not the case. It seems to be a bit of an unscientific assumption made by STTM. In truth, it seems, low cortisol INSIDE THE CELL is a problem because cortisol is responsible for working a mitochondria and cell nuclei (Paul Robinson’s website). T3 and cortisol have a relationship of building one another up in the body, and then working together in the cell to most effectively produce energy. So, this is why low cortisol is a problem, and not because of access!

cazmania7 profile image
cazmania7 in reply to Relentlesssearch

Thank you relentless. Time to dig out the adrenal support again if I can find them!

Relentlesssearch profile image
Relentlesssearch in reply to cazmania7

It is possible you have high cortisol… In fact Paul Robinson says that high cortisol is often the reason for people having high FTF but feeling hypo. I think you may need to test 🙏🏻

Relentlesssearch profile image
Relentlesssearch in reply to cazmania7

This is useful

rt3-adrenals.org/symptoms_c...

cazmania7 profile image
cazmania7 in reply to Relentlesssearch

I’ll revisit this link!

Relentlesssearch profile image
Relentlesssearch in reply to cazmania7

don’t give up 🙏🏻🙏🏻 The more I am reading the more I realise that ignoring adrenals is a major reason people don’t get better on thyroid medication xx

Sparklingsunshine profile image
Sparklingsunshine in reply to Relentlesssearch

Hi

I have Fibro, another dustbin diagnosis as far as I'm concerned. I certainly think having undiagnosed hypothyroid was contributing to many, but not all of my Fibro symptoms. Since starting on Levo and now NDT a lot of my symptoms like fatigue and aches and pains have improved.

But my poor sleep hasn't. And I've now got migraines to contend with. I'm curious about adrenal insufficiency, as mainstream medicine seems to regard it as not real.

As far as they're concerned your adrenals either work or you've got Addisons lol. Nothing in between. And they won't test them unless you've got specific symptoms. I've wondered if my adrenals are firing on all cylinders.

Relentlesssearch profile image
Relentlesssearch in reply to Sparklingsunshine

Yes, an adrenal saliva sounds like it might be useful for you considering Dr Peatfield’s book 🙏🏻 X

Relentlesssearch profile image
Relentlesssearch in reply to Sparklingsunshine

I’ve suddenly just thought… you could try reading: The Metabolic Treatment of Fibromyalgia, and this website may be useful: tpauk.com/main/article/dr-l...

shaws profile image
shawsAdministrator

You state "I believe my endo will suggest trying T3 mono next but to be honest I’ve pretty much lost hope and do wonder if my problems lie elsewhere now despite having been utterly convinced that the key lies within thyroid treatment".

Thyroiduk.org.uk had a doctor/scientist/researcher whose interest was in helping patients to recover their health and also resigned his licence so that he couldn't be pursued by the 'authorities' for not following their guidelines.

I shall give you a link and you may find it encouraging.

Dr Lowe died due a bad fall that caused a bleed in his brain. He is badly missed and he saved lots of lives.

I trialled several options - NDTs, levothyroxine(T4) had awful affects but liothyronine (T3)has resolved all of them.

web.archive.org/web/2010103...

He would never prescribe levothyroxine as he stated that it became the No.1. prescription due to the 'experts' being paid to prescribe. He only prescribed Natural Dessicated Thyroid Hormones or T3 for 'resistant patients'.

NDTs were the very first life-savers from 1892 onwards. Unfortunately these were withdrawn a few years ago - without any notice given and caused lots of anxieties for patients who were well upon them.

I think everyone should be able to trial 'options' if not improving on levothyroxine.

cazmania7 profile image
cazmania7 in reply to shaws

Agreed! This forum is proof that it works. One Dr historically told me this stuff was anecdotal. You couldn’t make it up.

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