going to stop medications and see a nutritionist! - Thyroid UK

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going to stop medications and see a nutritionist!

Bioluminence profile image
35 Replies

HA had a bit of a brain storm......i was initially diagnosed with borderline hypothyroidism......but had a lot of symptoms, weight gain low energy feeling cold, depression...etc etc etc......

At no point did a doctor tell me that these symptoms could be due to a vitamin or mineral deficiency.....i was duly offered antidepressants and thyroid....150mcg of levothyroxin prescribed in 6 weeks and all done over the phone without being seen....jsut take these for the rest of your life....that was it....

anyway had mixed bloods since then.....and have never had a test result the same or one to suggest we have reached the right dosage...been on armour now for 6 months and to be perfectly honest the results suggested I'm overmedicated ....im also chronically low in bit D and iron..ive researched this further and discovered that the many of my symptoms could possibly be due to the low iron and fit D!!!! why didn't the doctor make this connection?

my hair has continued to fall out and the test results suggest i have very high T3 and T4 still ...and now a low TSH....SO i recon that i don't actually need this medication but i need to readjust my diet and lifestyle in order to get the right nutrients into my body!

I am going to speak to two nutritionists this week and I've stopped the medications....i just wondered if anyone else has tried this or even considered this!!!! i simply cannot understand why doctors are incapable of joining these dots up!!!

I am supposed to have another blood test in 3 weeks but the doctor has referred me to an endocrinologist now....so doest seem to think its necessary?? so i could be waiting for up to 3 months for the next blood test....hey ho thanks doc..in the mean time I'm stopping the medications and see if my hair grows back!

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Bioluminence profile image
Bioluminence
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35 Replies

Do you have antibodies? And what was your tsh on diagnosis? Wouldn't it be more sensible to reduce your dose a bit, if your T3 is too high, and supplement iron and D, then take stock once you've got them up, rather than suddenly stopping medication altogether?

SAMBS profile image
SAMBS

I stopped all my meds end summer 2014 - except my Levothyroxine! Which I've been on since 2000. Last End summer I decided to test myself on dosages which doctor had also been trying, up then down then up again! Sadly like all the others Docs including from what I gather on here Endo Consultants also - TSH is King! I took myself right down to 50mcg for a while - 100mcg being the mean average over all these years.

I did think for a while that my hair was thickening and didn't seem to fall out as much. My skin definitely improved and wasn't as dry and flaky. Unfortunately though, for some of the time,my short-term memory was getting worse and there were days when I forgot to take the Levo at all - irrespective of dosage at time. mid- December my doc out me up to 112.5mcg daily. My blood test was last Thursday - results arrived in Post Sat and I saw yesterday morning an email from Doc saying reduce to 100mcg. I think he may be wrong doing that. I do know I have 2 autoimmune conditions - Hashimotos being one (Autoimmunethyroiditis).

I think you should post your blood test results on here - if you have them in writing including TSH Free T3/4 Vit B12 Folate & Ferritin - the Admins and others much more knowledgeable than me on Thyroid will give you some some god sensible guidance.

Remember though, that on here we are not medically qualified - like you, we all trying to find our own way. The rest of my health has definitely suffered for a variety of reasons over last few years, I'm now going on my own gut instinct, literally.

If anyone ever asked me "should I take take antidepressants?" For me it would be a very definite and emphatic NO - qualified by " but its your choice". My reasons, they didn't do my liver any good and what's bad for the liver is bad for the blood and the brain in my book!

Anthea55 profile image
Anthea55

In the UK most of our doctors have minimum training in nutrition and don't know the symptoms of deficiencies unfortunately.

Bioluminence profile image
Bioluminence

i stopped levothyroxine last year after just 3 months of it....i felt FANTASTIC! then by october was crawling on my hands and knees...ive only just realised that my iron levels were chronic back then! and since then thought it was all thyroid related but to be honest i recon its vitamin deficiency!!! my antibodies are fine! everything else was fine!! i just took for granted it was thyroid! and couldn't possibly be vitamin deficiency that would be too simple right???? NO..all of my symptoms are pretty much the same as iron deficiency....WHY don't doctors see this?

AS for stopping meds, I'm on 1 grain daily its hardly earth shattering if i stop it...to be perfectly honest it seems to me that doctors are clueless and totally unskilled in treating thyroid conditions...if they were there wouldn't be this forum for a start! and seeing as we are all individuals all fighting for some sort of result i recon ill do it quite simply my way...

all i know is that last year between the months of May and October i was feeling great....but had no idea about iron deficiency at the time! it wasn't until i asked for an iron test that they offered me one finally!!! it was so low and i was put on supplements.... they made me so ill, I'm still on different supplements but its making me feel really poorly and my digestion is awful, i have chronic bloating and pain most days unless i don't eat

so I'm seeing the nutirtionsist I'm going to have a diet overhaul and try to incorporate the foods that will help. i will keep on taking iron supplements for now i don't have much choice there

i may ask doctor to refer me to a gut doctor as i don't want to see an endochononolisgt i don't have ANY faith or respect for any of the health service I've had so far....in fact I'm utterly disgusted at the way I've been treated and have suffered this last 18 months.

greygoose profile image
greygoose in reply toBioluminence

You only took levo for 3 months. Hardly a fair trial, is it. Barely time for it to start working. And it's doubtful that in 3 months you got to a high enough dose to make you well, given that increases are every 6 weeks minimum.

You stopped taking it and felt fantastic. Normal, happens all the time with thyroid hormone replacement. We read it over and over again on here. Happened to me, too. Stopped my T3 for 6 months. Felt fantastic at first, was convinced I'd been misdiagnosed, then went slowly downhill til my TSH reached 35 and l came to my senses.

You then found yourself in dire straights again. Logical progression. But it wouldn't have happened if you hadn't needed the thyroid hormone replacement. If you hadn't needed it at all, you would have continued to feel fantastic. Or at least reasonably well.

So, your iron etc was low. But have you asked yourself why your nutrients were low? Would it not be logical to think that they were low due to being hypo with all that that entails? If you need thyroid hormones, you can't replace them with nutrients. And you can't raise your nutrient levels if your thyroid hormones are low. The two go hand in hand.

So, your going to see a couple of nutritionists. Well, if you think doctors know nothing about thyroid, nutritionists know even less. And, in my experience, don't know much about nutrition, either. They are as influenced by Big Food, in general, as doctors are by Big Pharma.

So, be careful. Make sure you're not jumping out of the frying pan into the fire. Experiment all you like, but try to keep an open mind about going back onto thyroid hormone replacement. Keep a close eye on your hormone levels, and research everything you're told, carefully, whether it's by a doctor or a nutritionist. There's an awful lot of ignorance out there!

So, good luck. And keep us informed of your progress. OK? :)

greygoose profile image
greygoose in reply togreygoose

Oh, and I forgot to say, don't forget to give things time to work. Nothing is going to happen in a hurry. And if you keep changing regimes because you don't get instant results, you're never going to get any results at all.

Bioluminence profile image
Bioluminence in reply togreygoose

6 months not long enoug on meds then? Oh and what about vit d? Been on that a year and iron for 8 months.... How long do I need to do this feeling like death ?

greygoose profile image
greygoose in reply toBioluminence

As long as it takes.

No, 6 months is not long to give one particular form of thyroid hormone replacement a fair trial. It can take a year, increasing slowly.

The next thing is then to try adding in some T3, increasing slowly, decreasing the T3 a bit. Then, NDT. Then, in a last resort, T3 only. It's all trial and error, no guarantees and no quick fix.

Likewise, it takes time to increase iron levels, they can be notoriously difficult to raise. And you have to find the form of iron that suits you. Vit D a bit faster, usually. But it's rarely any one thing, it's a combination of things.

And it's very rare that doctors misdiagnose by saying you are hypo if you aren't. It's usually the other way round. So, completely eleminating all forms of thyroid hormone replacement is rarely the right way to go.

in reply togreygoose

Wish you could be my doctor! You talk sense :-)

greygoose profile image
greygoose in reply to

Thank you, StillSearching. I wish I could be your doctor, but I'm not medically qualified - which is probably why I talk sense. :)

marsaday profile image
marsaday

Stopping thyroid meds can be a very valid way to guide you as to what they are or are not doing. You should know within 2 months if the thyroid meds were helping you because you will feel pretty ill if they were. If they were not needed then you should notice no changes.

IF you were given T4, why didn't you first try adding in some T3 before going over to armour. T4/T3 is much better at helping you get the correct thyroid mix for your own system. You have much more control over the ratios plus the NHS seem to be happy to use T3.

jacrjacr profile image
jacrjacr

a nature path dr would be better .....to guide you, they are very good at that if you could find one....

Bioluminence profile image
Bioluminence

I just do not get it... I was diagnosed with borderline hypothyroidism, I was not asked about sit or lifestyle just dumped on 150 mug of levothyroxine over th phone and told to f*** off I wasn't even invited back for another blood test in that 3 months and you tank that's ok?

Coupled with HRT and antidepressants it's hardly any wonder I don't trust the ********

And to be honest since jointing this forum I've been told things from using non aluminium pans to taking enzymes is going to help...nobody has any solid answers and it seems to me everyone is flaying around waiting for the next fad to come along.....try standing I your head whilst chewing a unicorn horn...worded for me

I've been on armour thyroid now since October.... My iron levels have been low since last summer they haven't changed despite a th iron diet and supplements

How long do you need to take a vitamin supplement? 1 year? 2?

How long for a thyroid med?

I've felt disgusting since being on it

How can it be working? My hair is falling out and I feel ill how can this be right I take a handful of supplements and yes I split them up and yes I take the iron with vit d etc etc along with all the other little rituals suggested and yes I've read up on this stuff and yes I've tried it

I don't think I'm being unreasonable in thinking there has to be another way? At no time did th doctor suggest that the absorption was down to low stomach acid....he siad it was heavy periods despite the fact I hadn't had one for 4 months....at no time did he say I wonder why this isn't making you feel better or bloody hell nothing is happening,,,,and w supposed to put our trust in thes idiots? What bloody hope is there

Has anyone on this forum actually had any success at all with taking thyroid replacement because it seems that everyone is suffering at the hands of clueless doctors and endochronogolist

I stared to take a food supplement to help with chronic hot flushes....within three days yes THREE DAYS they began to become less frequent....these things have a natural ingredient in ...plant derivatives.....THAT is what made me sit up and think there something in this....

I actually think pharmacists know more than doctors...I believe that a good highly recommended nutritionist would look at the whole picture not just tell me to take this and f*** off....

So yes I will let you know how I get on

greygoose profile image
greygoose in reply toBioluminence

OK, OK, vent your anger, have a rant! You have a right to be angry, it’s a disgusting situation that we’re all in! We’re ALL in, ok? But, remember, none of this is OUR fault. None of us are doctors or health professionals giving advice in the capacity of our calling. We are all just hypos that the system has let down, just like you. We have suffered, too. And we have searched and searched for our own solutions. And yet, despite being ill, we take the time to pool our findings in the hope of helping others, because – although the system doesn’t care – we do! So, please find another target for your anger.

We all know – here at least – that doctors are rubbish. And that they know nothing about thyroid, and that they know nothing about nutrition – that’s a given. You’re not telling us anything new. And nobody here ever said the contrary. It’s not us that have let you down. We’ve just told you what we’ve found has helped. Nobody promised that it would help you, because we’re all different, and you have to find your own personal solution. Just try it, that’s all. And don’t you think you’re being rather unkind – to people that have tried to be kind to you – by talking about ‘flaying around’ and ‘no solid answers’ and ‘fads’. What, exactly, did you expect?

No, you’re not being unreasonable in looking for answers, we’re all doing that. Where you’re being unreasonable is in expecting someone to wave a magic wand to make it all better. I think you are having difficulty accepting that you have a serious disease – this isn’t just a headache, and hormones are not aspirin – and that it’s going to take time to get better. You didn’t become hypo, with low stomach acid, causing nutritional deficiencies, over-night. It took a long time for it to get bad enough for your doctor to actually notice – and forget the ‘borderline’ cr*p, either you’re hypo or you aren’t, and most people are extremely hypo by the time they manage to get diagnosed, never mind what the stupid TSH says – took me about 50 years! Of course it’s going to take time to rectify that damage.

So, we all know that doctors don’t tell us things – because they don’t know them themselves – but that doesn’t mean that these things don’t exist. Your doctor was probably exceptionally ignorant – and we all commiserate with you about that – he started you on too high a dose, which was bound to make things more difficult, and he didn’t understand about testing regularly, and increasing slowly until symptoms were all gone. And he knew nothing about nutritional deficiencies – same as the majority of doctors. And now, because of that, you virtually have to start all over again. So, it’s perfectly understandable that you’re angry. But that anger is going to work against you if you let it over-ride your common sense. You been have given a lot of good advice on here, by kind, caring people – ok, so some of it may be a bit off-centre, but, come on, that’s life! – so we don’t expect your undying gratitude - a simple ‘thank you for trying to help’ will do - but I don’t think we deserve your vitriol, either. Save that for the person that did this to you – your doctor!

Bioluminence profile image
Bioluminence in reply togreygoose

You have directly accused me of being angry at you and the other people on to forum and I'm simply not!! So let's draw a line under that little chestnut eh...you siad we ar all angry at our situation....for sure..I agree

I felt slightly patronised in the first place to be honest... I never expected a magical answer!!! And 18 months of this nonsense isn't expecting instant answers so let's just agree we are all ***** off....I apologise for the rant....

Some people do not believe a nutritionist is the answer but aft talking to two very qualified professionals today I would simply rather go to them for advice than w doctor....

What I find staggering is the lack of support from doctors and endocrinologists! Why do we have to do our own research? Why can't they join the dots? Something as simple as vitamins..these are basic vitamins!!!!???

why have I had to do this process of elimination? Why have I had to beg for blood tests?..why why why is such a common problem so difficult to treat?

I firmly believe that my diagnosis must be wrong.....all the medication has made me feel,worse and th test results suggest that even on the smallest dose of armour I am over medicated...so where do I go now? I think by cutting right down on them and modifying diet I simply HAVE to feel bett than I do right now...and I wonder how many other people women especially are b misdiagnosed??? Or mis treated?

My guts are in a terrible state....I feel sluggish cold and depressed, I cry most days.......and all I get offered is antidepressants and painkillers....this isn't the answer....

I am grateful for the Tim people have put in to answer me....and I never expected simple answers or quick fixes!!! The last 18 months has brought me to my knees, I lost a good job paying fantastic money because of this and some days I can hardly must th energy to get up..I have got increasingly grouchy tired depressed and miserable and ..it's just not the person I am ....it's the person I have become due to this dos ..ease.....

I think it can be treated simply but it's finding that solution which rod for me.....

So once again apologies for the rant.

greygoose profile image
greygoose in reply toBioluminence

:) No, Don't apologise for ranting! We all need a good rant. You just gave the impression that you expected more from this forum, and that we were all rubbish and ignorant and let you down. But, water Under the bridge...

There is one simple answer to all your questions 'why?' - why Don't they know about vitamins? why Don't they join the dots? etc - and that answer is : Big Pharma.

Big Pharma sees us humble hypos as their Milch Cows.

Big Pharma controls what doctors learn in med school, because they put up the money. So, they Don't teach them about symptoms of hypo and adding two and two together, they teach them to treat every symptom as an isolated incident and prescribe a drug. Headache? Aspirin - or something worse. Cholesterol? Statin. GERD? PPIs. And so forth and so on. And, that way, BP is making several small fortunes!

If doctors knew how to treat thyroid correctly, and prescribe the appropriate thyroid hormone replacement, so that people got well and their symptoms disappeared, BP would lose all that money! And their share-holders would not be happy! And share-holders are much more important than patients!!!

Similarly for nutrition. If doctors knew about vitamins and minerals, and the ravages caused by deficiency, drug sales would decline even further. Imagine treating heart problems just with magnesium, instead of the multiple prescriptions doctors prefer to use. Where's the profit in that?

What always amazes me, though, is that doctors seem to be deaf, blind and stupid! They Don't listen to us, they Don't look at us and they can't seem to think for themselves, just follow the instructions of drug reps. Médicine seems to attract a certain type of personality, and their délusions of grandure are re-enforced in med school when they are told that they are a Superior breed, and all patients are stupid and liars. And they Don't seem to have the strength of character to see through all that.

There are exceptions, of course! But, that seems to be the general rule. And, nowhere does it show up more than in the realm of endocrinology.

A lot of good people are fighting this. But, the problem is, hypos are very often so ill, they Don't have the strength to fight - the medical community is a mighty enemy to take on! Plus we have the brain-fog that is dulling our wits, making highly intelligent people struggle for words. (Even I sometimes suffer from that! lol) For the most part, we're just a push-over. And BP wasn't slow to latch onto that fact. We are what keeps them alive. And, nothing will change until they topple from power.

However, like most narsisistic types, they always have a chink in their armour - and that chink usually is going too far, and thinking they are invincible. I think BP is on the brink of doing just that! And there are a whole host of people just waiting to take advantage of that! Vive la révolution!

(OK, political speech over. lol Take care. x)

Bioluminence profile image
Bioluminence in reply togreygoose

Ting is good money could be made out of vitamins supplements...damn they could repackage it and sell it to us!! I'd gladly pay for it!!!! As I'm sure everyone would here!!!

The doctor I saw was absolutely dumbfounded when I asked him about bioidenticals treatments for hormone replacement for menopause...he laughed in my face and told me I needed HRT and not his words "slate cream all over myself!" What a complete patronising *******!! I did a little bit of digging on this doc ...I found out that he had been caught TWICE for having illicit drugs on him.....in fact he was caught and arrested for having ketamine strapped to his balls at a rave...and yes he was actually a practising GP in he uk...he was suspended but was let off?????? He still practices now!!! that also compounded my utter disdain for the doctors at that surgery,

Thanks grey goose I'll keep you guys all informed I sometimes say things they come out wrong and I certainly do not want to upset anyone...none of you are rubbish...I'm just exasperated at the situation.....and since raising the legal age for retirement? How the hell can I work feeling like I do? I'll be dead by the time I reach 65 if I carry on like this....but they cannot see that far ahead....

Like you say they are literally killing us...it will eventually bite em on e ar** 😳

greygoose profile image
greygoose in reply toBioluminence

No, there's not nearly as much money to be made out of vitamins as there is drugs. You cannot patent a vitamin, and patenting a drug means that you can charge as much as you like for it. Which is why BP invented synthetic hormones, they can't patent the natural stuff. And that's why T3 is so expensive in the UK. Look at the recent scandal about the HIV drug. You could never charge that much for a vitamin.

Anyway, I wish you good luck. You might even discover a new cure for thyroid! :)

SAMBS profile image
SAMBS in reply toBioluminence

Hi, Bioluminescence, I've just read this morning all the replies - something that occurs to me about your replies - your path in a lot of ways has been similiar to mine - what I'd like to add, because I think a lot (probably) GreyGoose says makes perfect common sense - but I can assure you she is right in what she says about nutritionist, they know f.all - you see I've been there done that, I think you are about 2 years behind me on your path and yes I'm still trying to sort myself out. My complication is that I had an out of the blue aneurysm and brain haemorrhage 3 years ago to the day next week. that definitely had after neural (mental) after effects - in my behaviour, mood, appetite, the rate at which I get infections has definitely picked up, especially in the last two years.

One thing I never see on posts here on TUK, are people saying 'I've' had a stroke, or 'I've' got Alzheimer's but on some other forums I've been on, especially depression and anxiety ones, the Brain Injury one (I'm one of those - probably why I ramble on a lot) , yes sometimes people say they have thyroid conditions, diabetes, liver conditions through cancer or alcohol, or other blood disorders.

Those are the BIG organs and systems in the body. Glands are almost ignored as irrelevant, except on here the Thyroid Community. Thyroxine is a v major essential and the thyroid needs the pituitary gland - like Romulus needed Remus in Greek Mthyology. They were identical twins - they acted together! But if one of our non-identical 'twin glands' in the HPTA axis is not functioning properly then God Help us. I even think the tonsils play a part - doctors say we dont need ours tonsils and I think that if they get infected and whipped out it "could" be the start of Thyroid problems for some people. I have 2 sons,22 months between them and both mid 40's now - the eldest had tonsillitis getting worse year on year for about 8 years before his were removed age 16. He was always the slimmer of the 2 - now he is v much the larger - He is overweight, getting more and more so over the years from his teens, No energy, never liked the physical sports at school during his teenage years. I wouldn't mind betting he's got a Thyroid problem and doesn't know!

The younger one is the slimmer one now, apart from a period of drinking too often during his 30's when he got a 'beer' belly - is now v much the slimmer and more active one! I haven't seen either of them for a couple of years. But like many of us on here with Autoimmune conditions, I do think our Thyroid problems must have stemmed from an interruption to and/or infection in our HPTA system, if you put those initials into Wiki it will explain all about that.

I also think this is why Doctors do not understand at all about how to treat us and no a nutritionist certainly won't. For myself I have followed my own health history and yes my glandular system was interfered with when I had a TB infected one whipped out of my neck as a baby.

The problem is - there are so many reasons why we all as individuals on different life and health paths have different reasons and reactions to medications. I know that too many different prescribed meds in the last 5/6 years affected my spleen, liver and blood stream. Toxic Blood going through the brain on its way round my body, also affects my mental capacity of that I am aware.

Now I must make the appointment for my face profile/neck x-Ray ordered by my doctor.

One last thing I've had a chest infection recently - making breathing difficult so my doctor came out to me - prescribed antibiotics as well as Prednisolone. I took the Prednisolone (it's not an antibiotic) my 'gut instinct' told me not to take the antibiotic, I don't know why so I didn't . Instead I puffed on a cigarette to make me deliberately cough - so I did and up came the muck, does that word originate from mucus? it soothed my throat also - it was just a little puff. Coughing also made me have to keep blowing my nose and more muck up and out from the gut region. Little specks of blood in both clearances. Was that the toxic Mold in the house causing that. I don't know it took about a week to clear the worst of it all. I've used my Vicks nasal inhaler to help with the breathing and the wheezing I've been doing for months and months is slowly reducing. I have also recently been burning an Anti tabac candle, the atmospheric pressure in the house seems to have lightened as well. What chemicals are in that candle I don't know - but I find the coincidence of my puffing and the candle burning seeming to resolve 2 things at same time inexplicable.

As GreyGoose said - we are not the doctors - we can only try and find what works for us as individuals and if it does - come back here and tell others in the hopes we can help them on their own health journeys.

hose1975 profile image
hose1975 in reply toBioluminence

I was diagnosed with hypothyroidism over 20 years ago and did very well on levothyroxine (T4) for at least fifteen of those years. Started running two years ago and everything went wonky. Finally found this site and because of what I had read here, backed up where possible by actual studies, I made the decision to add T3 into my mix with the blessing of my GP, who agreed to monitor me. Also got my vitamins and whatsits checked privately (on the erroneous belief that my GP wouldn't have tested them if I'd asked); found my B12 was low-normal and my ferritin rock-bottom. Got prescribed ferrous fumarate which I still take, and will probably be on for life. Hair only stopped falling out when I was just over mid-way in range; thyroid levels were pretty good at that point so it was definitely the ferritin wot done it.

It took eighteen months to get to that point.

And now, because of premature menopause, I have to play around with my thyroid meds again. However, I now know what levels of fT3 and fT4 I need in order to feel actually, properly, well, and that is what I am aiming for.

Greygoose and I have clashed politely in the past, but on this she's absolutely on the money: if you are hypothyroid you need meds. And maybe not just thyroid meds, other basic levels may be low too. AND THEY ALL NEED TO WORK TOGETHER.

Would you tell someone who is dependent on insulin, who decided to give up their meds because they weren't feeling any better, that that seems a jolly wheeze? Of course not, because, like you, the fundamental lack of hormone is what will kill you (slowly, in our case, and with a beached-whale corpse; pdq in the case of the diabetic unless they eat nothing but pure fat).

As GG says, ALL thyroid meds need to be given a fair crack of the whip to see at what dose you may start to feel better without going massively over on the top end of the range. Like a baby belly, which took nine months to grow and shouldn't be expected to ping back flat immediately, so it goes with thyroid meds: it took years (normally) to become unwell enough to need them, it will take (possibly) years to find the dose that makes you feel normal again.

Bioluminence profile image
Bioluminence in reply tohose1975

Thanks you have given me hope I'm on that vile ferris fumerate it's Turing my guts inside out...injustice regularly and eat a lot of green leafy stuff.im hoping further modifications to diet. I'm already practically gluten free by choice will help....

I have lost faith in doctors.

I think I must have been miss diagnosed as even the,

Smallest amount of medication suggests that I'm over medication.

The low vitamin levels would have giv similar symptoms!!!!! I know that now...so maybe my poor body as crying out for nutrients rather than hormones???? That's my line of think kg right now.

Again like you all say it'll take months to sort out...I just wish my hair would stop falling out and that I stop feeling so damned tired and cold all th time

Thanks for y or advice x

hose1975 profile image
hose1975 in reply toBioluminence

Not quite what I said, no...

in reply toBioluminence

Ditch ferrous fumarate and replace it with iron bisglycinate (needed in low doses and high bio-available/absorbed). Depending on your ferritin levels you may need 25 mg x 3 or x2/day.

Add a good b-complex with high B5 if possible.

Great decision on your part to avoid all gluten as it inhibits the absorption of iron and zinc.

Heavy period is a sign of hypothyroidism/low T3 which in turn causes your hair loss.

Think of your healing as a house to be built brick by brick. Plan the strong foundation with adjusting all the body biochemistry and functioning.

It is sheer luck if you get hold of a good doctor whether functional or traditional. It takes double luck for them to address all the underlying issues for the bodies/individuals are unique, biodynamic, and react differently to adjustments/treatment. This is if they knew what they are doing. How long is the piece of the string...all depends when you'll see the light at the end of the tunnel.

If you've had any tests done on the minerals and vitamins levels, share them and perhaps we can assist you to starting doses, adjustments, and maintenance.

Most of your symptoms are shouting hypo..As for why your thyroid is not functioning properly, this depends on your age, lack of nutrients and/or raw material to produce T4 and convert it to T3 along with the proper conditions for it to happen.

Armour is not gluten free. Many have reacted to the dextrose (can be made from wheat). Switch to Nature-Throid or WP Thyroid.

Start 1/4 grain on week 1, add another 1/4 on week 2 and for another week, then 1/2 for two - three weeks. You are at one grain now. Stay 2-3 weeks, Then adjust with an increment of 1/4 and so forth until your symptoms resolve.

tpauk.com/main/how-to-use-n...

I hope this helps!

Catlover3 profile image
Catlover3

Hi. I know exactly where you are coming from! I was diagnosed with hashi's when I was just turning 40..."Life begins at 40" so its said, but for me it was downhill all the way. I tried levo for the first year and I wasn't improving at all. I had many side effects and all the docs wanted to do was add more and more drugs. For me, changing to Nature-throid meant that I can function on a fairly normal basis and I don't bother with what the doctors say anymore. One told me that I would die taking this stuff..well 14 years on and I am still here! I read everything I could and went on different forums for advice and got really really confused with all the different suggestions and ideas and whether to take adrenal support etc etc.. Anyway I just choose my own way and split my dose which is taken sublingually. I don't avoid any foods but supplement with b12. Am getting D3 tested privately but will have to go to useless doc for other tests which are overdue.....going with great reluctance though. It is an absolute nightmare having to deal with such a crap illness without medical support but I gave up long ago expecting doctors to listen or to understand. I hope you can get through this mess and can gain a better quality of life. x

Chippysue profile image
Chippysue

I hear you!

It took me 5 years to get better. Now when I say get better - I have my life back after being house-bound and bed-bound at worse, and the best was being able to go out on a mobility scooter for an hour or so.

We are all so different - I am yet to meet two thyroid sufferers the same. This is why it is impossible (in my view) to recommend an Endocrinologist because he/she will be able to help some but not all because we are DIFFERENT.

I run the Midlands Support Group and have over 100 members now. This is just my findings and my opinion - the people who have changed their diet have had a brilliant response. It's not just about the thyroid. (Incidentally I have never believed in the nonsense "borderline hypothyroidism" - I mean you cannot be half pregnant for heavens sake!)

To quote one of my member's reply from the email I sent out about this Saturday's meeting - "Sorry Swimming Marathon for Sport Relief... No rest for the properly medicated super-fit!" because this member, who has a sense of humour too followed exactly what her Endocrinologist said - Follow a gluten and dairy free diet and take these supplements and Naturethroid. So this lady who has a high powered job and busy lifestyle who was struck down and in bed for 4 months got her health back.

For me - and this is just me, my B12 was 289 when I first had it tested. I had lost 60% of my hair. I have been supplementing on and off with Jarrow's sublingual B12 lozenges. My hair re-grew when I finally got thyroid medication into me but when I stop the B12 then some of my hair is in the shower tray. I do plan to have my active B12 tested. Some members of my group do self inject with B12.

In many cases standard Levothyroxine causes hair loss.

So, many people scoff at the thought of following a Gluten Free, Paleo or Autoimmune Protocol but it depends on how much you want to feel well. Nutrition is vital - if you want to know anything about Nutrition then a GP or Endocrinologist is not going to be able to help you, as you probably know they spend a couple of hours on Nutrition at Medical School.

There are members who have finally got rid of 'leaky gut' and/or candida and feel amazing where as there are some members who try lots of different thyroid medications and still haven't found the answer.

These diets are not fads. Dr Sarah Myhill has a lot of good advice on her website about following a stone-age diet.

I get angry when there are members who have 3 miscarriages because doctors thought that she was border-line - thankfully she is now 5 months pregnant since starting thyroid medication.

I get angry when I hear of people committing suicide, losing relationships, losing careers, losing homes, losing years of their lives. The bottom line is to research, find out what is the best option for you.

I lost 5 years of my life, many people lose many more.

Sue

thyroiduk.org

Bioluminence profile image
Bioluminence in reply toChippysue

Thanks sue...yes I discovered I felt bett going gluten free...but my guts ar playing up something chronic and apparat lay I'm still ovr medicated, I take armour thyroid do y suggest nature thyroid?

I'm on a tiny dose now I'm taking 1/4 grain again.....my hair loss started once I started this med 6 months ago.....so I believe the armour has something to do with it

I'm trying out the nutritionist and I have an endo apt in May....ill ask him about reuse t3 but don't hold much hope for an intelligent reply.....thanks again

BeansMummy profile image
BeansMummy

Neither my endocrinologist nor GP seem to have any understanding of diet or nutrition, and absolutely no interest when I’ve asked. Whilst my Hashimoto’s may not be a direct cause of my nutrient deficiencies, it has certainly caused me to have non-existent stomach acid. I had persuaded NHS doctors to test my Vitamin B12, D and iron - all were deficient (so now have B12 injections and prescribed vitamin D and, occasionally, iron). The symptoms of those deficiencies were debilitating.

I had already given up gluten and soya, but was struggling badly with so many symptoms. My GP did eventually refer me to an NHS dietician for various tummy problems, and she knew less about diet than I did (she didn’t know that, as a vegetarian, I wouldn’t eat meat or fish so I knew I was losing the battle already).

I sought help from a private nutritionist, and she has very definitely has helped me to turn my life around. She encourages me to keep my NHS doctors in the loop, and certainly would never advise me to stop taking my thyroid medication. A decent nutritionist certainly will know about diet and nutrition, and mine also understands how auto-immune disease affects the body.

I have had further tests done and, apart from the usual culprits of B12, D and iron, I am also deficient in vitamin C, protein, and other vitamins. I also have candida, a gut infection and bacterial overgrowth – this is now all in my NHS file, but my GP isn’t interested in helping me. To be honest, I can’t cope with the stress of trying to persuade the NHS to do anything for me anymore.

Symptoms of thyroid disease and nutrient deficiencies may well overlap, but that isn’t a good reason to decide that it isn’t your thyroid, and to stop your thyroid medication. I have been successfully addressing my nutrient deficiencies and gut issues (proven with blood tests and feeling better), but my Hashimoto’s is still there and can’t be ignored.

Bioluminence profile image
Bioluminence in reply toBeansMummy

Thanks for your experience you wh giv me some hope!! Xx

machineman profile image
machineman in reply toBioluminence

a couple of things to cut out of your diet would be dairy, grains (unless you can get heirloom seeds that have not been genetically modified) and fluoride.

fluoride is toxic waste from aluminium processing plants and phosphate fertiliser plants (or nuclear waste that has been given to the phosphate fertiliser companies)

fluoride has been proven to cause thyroid cancer it used to be used and probably still is to cure hyperthyroidism web.archive.org/web/2002120...

so all of you who have hypothyroidism fluoride is pretty much the one reason why you are ill.

replace your toothpaste with sodium bicarbonate and once a week use sea salt to brush with, sea salt is pretty high in natural fluoride or calcium fluoride which is not very soluble in water but it will clean your teeth really well if we take Colgate 0.32% of it is fluoride and they also use a low grade aluminium in it this will attack your brain there are 2 pathways in the mouth that go into the blood system and directly into the brain.

Boron is really effective at removing fluoride as it grabs 3 parts fluoride to 1 part boron, boric acid which contains 17.5% boron, due to the enzymes of the pancreas being destroyed borax which mixes with your stomach acid is not to be used until you have stopped ingesting fluoride and resolved the stomach issues

boron will also remineralize your bones due to it grabbing the calcium out of your soft tissues and putting it back where it belongs

here are some issues from scientific studies I have come across whilst researching fluoride and health.

When fluoride was offered to the governments under the lies that it helps with cavity prevention the only government to actually test its safety was Swedens where they proved it stopped enzyme production meaning it is a poison.

NO other government or the FDA have ever tested its safety

one part fluoride in 15 million parts per kilo of body weight has been proven to inhibit pancreatic enzymes.

5 parts per million has been proven to destroy the kidneys if they are not functioning at 100% if you have diabetes or kidney problems 5 parts per million has been proven to kill people.

it also blocks the pineal gland

it also causes skeletal fluorosis in 50% of the population over 50 in America and dental fluorosis in 41% of American teenagers aged between 12-15

positivehealth.com/article/...

private testing has been done on this as well as other studies that have been hidden from the public there are 3 doctors who have done research on fluoride for 20-30 years. Charles perkins, westendorf and Sutton none have anything good to say about it

web.archive.org/web/2012032...

Oh yeah and cavities are increased by an average of 21% is it any wonder dentists tell you its good for you

also do not use Teflon or aluminium pans to cook with a safe brand is xtrema clay pots clay is the bets cooking pan you can use once its warmed up you can turn the heat down really low and it doesn't have any interaction with the food it distributes the heat evenly through the food

If you can source vegetables grown without fluoridated water meaning you filter your own water and grow your own food (most tap water has lots of contaminants in including chlorine which removes oxygen out of your system, oestrogen which replaces testosterone in your heart grains and dairy are really high in oestrogen) a water filter can be bought for around 150 pounds and then you grow the food yourself this is pretty much the best way as you are in control of your health and not some psychopath who is only interested in making money.

to help rebalance your stomach acid cayenne herb one teaspoon 3 times a day although you might want to start with an eighth of a teaspoon its pretty strong stuff, slippery elm bark protects the lining of your stomach while it is healing beets and seaweed and drink vegetable broth.

Bioluminence - over two weeks ago I sent you a couple of PMs following your request for Endo recommendations. Did you receive them?

Bioluminence profile image
Bioluminence in reply to

I don't get emails...

SAMBS profile image
SAMBS in reply toBioluminence

Bio, even if you access this site direct without emails, at top of this post page, click on arrow beside your name, you ll get a drop down box that will say messages, if you open,click, on it you should see the message from cinnamon girl and you can respond to it in private also.

machineman profile image
machineman

drugs.com/sfx/levothyroxine...

If your doctor has not got your thyroid hormone spot on it can casue problems throughout your body so just dispensing this is nuts.

dailymed.nlm.nih.gov/dailym...

PRECAUTIONS

General

Levothyroxine has a narrow therapeutic index. Regardless of the indication for use, careful dosage titration is necessary to avoid the consequences of over- or under-treatment. These consequences include, among others, effects on growth and development, cardiovascular function, bone metabolism, reproductive function, cognitive function, emotional state, gastrointestinal function, and on glucose and lipid metabolism. Many drugs interact with levothyroxine sodium necessitating adjustments in dosing to maintain therapeutic response

truthseeker136 profile image
truthseeker136

This post helps understand whats happening at tissue and organ level w.r.t thyroid hormones. hashimotoshealing.com/5-key...

DanteNXS profile image
DanteNXS

Congrats!!!!! I too have taken the healthy road to recovery. I was never prescribed anything for my hypo, but was given propranolol for my HR and palpitations. I went to see a Functional doctor and found that I was deficient in many areas, as well as having some minor gut issues. After a month I was feeling much better, levels optimized and symptoms decreased, after 2 months, things are way better, not perfect, but much much better.

Today's doctors DO NOT practice medicine, they prescribe drugs. They haven't got a clue about healthcare anymore.

DanteNXS

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