Hashimoto's hypothyroidism 6 years without medi... - Thyroid UK

Thyroid UK

137,730 members161,516 posts

Hashimoto's hypothyroidism 6 years without medication

Cana profile image
Cana
36 Replies

Hey there, I am 21 and male. I have hashimotos hypothyroidism. Some of my symptoms include memory loss, fatigue, (all day but mainly morning and night) depression, extreme sensitivity to cold, and Inability to complete simple tasks at speed. Also I have a lazy eye that is slowly losing vision. (opticians see the eye itself as completely healthy) I have looked online and having an eye problem with a thyroid problem is very common. The brain can shut off or put less attention into one of your eyes to give the other one more of a boost.

I am a musician, and I really struggle learning songs, my fingers remember through muscle memory but my brain is not remembering the tune. No matter how hard I think about the piece or repeat it. It disappears.

Remembering simple things throughout the day is very hard for me. I want to try using Westhroid. I stopped taking levothyroxine about 6 years ago, as it caused the depression side to spike. Since then have been regulating my diet more or less with sea vegetables. I have had all of these problems for years and years. I cant remember when they started. I think I have always had these. The differences of Westhroid and levothyroxine is one is natural and is simply the thyroid gland of a pig. And the other is a synthetic hormone supplement which contains gluten.. which gluten makes the thyroid worsen.

I have not really seen a GP about my thyroid condition in about 5 years, my thyroid glands tend to swell on the occasion. I have been treating and preventing the swelling of my thyroid glands with nori ( a seaweed) as it contains iodine. It works for the swelling and returns it to normal size, it gives me some energy. Unfortunately it does not work permanently, nor does it fix everything. However it compliments the thyroid very well in my experience of using it over the years.

I go through extremely dark times with the depression side of this. It's very hard to cope at times. As I work in a cafe with a constant need to rush around doing hundreds of things at once and a never ending queue. The environment I work in is negative, the mood is not good at all. I am reaching out today and letting you guys know my symptoms and how they are effecting me.

The light side in all of this, I had a very pleasant two days when I had Acupuncture once. He treated and knew exactly what my body needed. I was really skeptical about trying acupuncture, I am actually afraid of needles as well. I decided to bite my lip and go for it. The needles are thinner than a strand of hair, and you cannot feel them. You feel as if there are pennies placed on certain parts of your body. On the day I had acupuncture I had a swollen gland, did not want to leave the house and had no energy. When the treatment was done I felt absolutely amazing. I ran home, had an amazing burst of happiness for about two days and was enlightened to it for days after. Fatigue did creep up after a few days and the rest of the symptoms returned gradually. Downsides of Acupuncture is that I cannot afford constant treatment.

Is there any help out there for us?

Please let me know if you have similar symptoms or could help me in anyway.

Written by
Cana profile image
Cana
To view profiles and participate in discussions please or .
Read more about...
36 Replies
galathea profile image
galathea

Hi, welcome to the forum. As you have hashimotos. ( shown by high antibodies). Its not going to go away or get better on its own. Your thyroid is slowly being destroyed and your body will be working harder and harder to prop you up.

If you are unhappy with levothyroxine, you could argue for liothyrone (t3) but the docs are scared of it and the company manufacturing it for the uk has a monopoly so is charging almost £200 a month for 20 mg a day.....

Many of us self treat with ndt, its sometimes prescribed by doctors in the uk, but as its not illegal to import meds for your own use in the uk, then its often just easier to source our own.

Any particular reason why you are opting for westhroid? There are lots of other brands around, all with roughly the same amounts of t4 and t3. I use thiroyd fom Thailand or. Naturethroid from america. There is also, Erfa, np by acella, thyroid S and Armour. All are derived from pigs.

Have a look round the forum for stuff on ndt. Also have a look on the thyroid uk website... Http://thyroiduk.org.uk......

You ought to get hold of some tests, have your tsh and free thyroid hormones tested so you can see where you are with it... Your doctor should provide these, if not there are details of private testing on the thyroiduk site.

Whatever you do, you shouldnt just leave it. You will feel worse and worse over time and eventually when you have no thyroid hormones at all, coma and death... ( but it takes a while!)

Depression can be linked to low t3 and sometimes its treated with liothyronine by docs dealing with depression.

You're still quite young... Have a real good read, get yourself sorted.. You still got a lot of living to do.... Dont waste it being ill

Xx g

storm profile image
storm

I have a term for the depression side - I call it energy flow - worse when more stressed or tired - however I have had high anxiety, agoraphobia, panic attacks for many years - before they found I was Hypo (Hashi).

There is so much info out there and yes it is a dangerous game - however I think it is important to look at everything (which takes no end of reading) and it needs a holistic view too - which really covers so many things, we then don't have the energy, brain power to know where to start or what to believe. No one person can actually tell you what is right.

I knew that I was ill years back and they THOUGHT it was M.E. never proven though. Later a test was done for thyroid basic scores - all in range - so they said normal - I had no clue then, that in range but not at top end wasn't good enough, so a few more years passed until lots more stress pushed me over the edge - to couldn't walk, that weak - anyway as you saw - long story - but docs letting us down in various ways.

You will see I mentioned in another post a book out there.. which vaguely hints at some possible root causes, that person seen on social media - or website etc - but we cant simply believe everything - some is out for money - however I do see some backed up by previous scientific evidence...she is allegedly a pharmacist etc and 'healed self' ... but may have been one of a rare few!

With iodine - some say don't take any some say do...but always balanced with selenium - I say balanced as too much of that is dangerous. Some take brazil nuts (take haha)... only 2 or 3 a day... as varies how much is in them - but people can be sensitive not only to nuts but that brown stuff, forget name..between nut and shell.. but is normally left on...

Then it is iron (also dangerous to supplement) but if lacking... and tests may show not - but ferritin might be low - then Vit D3 ... and if that is risky...K2 with it... another one to be careful of... don't want clots etc.. loads more needed... and I don't have the funds either... but docs wont test these - I do know B12 needs upping - however no thanks to doc that said it was fine - and again should be higher in range! Grrrrrr :-)

It IS said to be a dangerous illness - but my simple view and obvs I haven't cracked it - is if they body needs something and you aren't putting it in.... obviously it will go wrong. I don't think with tight budgets and stress and other factors that we ever think about this logically - whilst we grab a sarnie... or toast... or chips.. whatever... and do that over time... where are all the vits, minerals, amino acids... WHOOPS... who'd have thought it...

Ok so it is said you cant switch auto immune off - yet read about selenium and as long as not too much of it - but also important NOT lacking in iodine - and you will read it lowers TPOab antibodies - wont say ALL.. I started eating brazil nuts...taking supermarket multivits etc few years back... not sure what happened as seemed to get a better score - then woah way worse.....

NOTE the bit where I bought ACE plus selenium - and that really gave bad side effects after ONE TABLET!! Thought it was going to lay me out.... visions went, really weird.. and heart...I felt I was fading away -and that was one and the only of those tablets I took. Now whether I was lacking in iodine back then - hence that selenium wasn't balanced - OR whether it started working and it was an almost hyper side effect...who knows... but it was scary! In fact at times I have been funny after a few brazil nuts... so I do that intermittently..

I think your whole thing might be to even look up videos on how thyroid works (and yep it is under attack) ... but some real great vids out there tell you the process and what is required - and the point is normally take some thyroid med (my doc wouldn't do porcine/ natural ) and work on rest of health - not to cure but get better - BUT it is said about 20% MIGHT get it under control enough to nearly say in remission...but that isn't a high figure and that it them that get tested for so much that docs don't...private and costs too much!

Some do 'supplements' like Nutri thyroid... again... I haven't braved it... was going to... but don't want side effects at all...then again I don't want to stay ill...

never give up trying - if in low mood - defo focus on getting B vits etc - from food - or if found low decide on supplements... also Vit C .... and so on...

It has been online laughs that kept me and others going, even when don't feel like it.

greygoose profile image
greygoose in reply to storm

Storm, vit K2 has nothing to do with blood clotting. That's K1. K2 just makes sure that calcium goes into the bones, not the tissues - like the heart, or the kidneys. So, Don't be a fraid of it. :)

storm profile image
storm in reply to greygoose

Thanks Greygoose - I had read some warning on K2 somewhere - but I knew about 'Vit K' for some time, (also to eat Romaine lettuce - careful on amounts) I only learned that K2 existed more recently haha! That left a little more research due - as is K2 in food etc - I've not had time to look - but merely understand if Vit D(3) makes some feel a little ill, take K2 with it...

Always confusing this illness.

:-)

Heloise profile image
Heloise

Hi Cana, may I ask how you know you have hashimoto's? Do you have antibodies?

youtube.com/watch?v=Z5SaM0R...

youtube.com/watch?v=3_uaUXi...

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

You'll find that neurotransmitters are an important factor and serotonin and dopamine need to be active and without T3, it's difficult.

youtube.com/watch?v=nZ_CP7l...

This is why the natural hormone which contains T3 may work better for you.

You need cofactors to assist your hormone to work so ferritin, folate, B12 and iron are needed. stopthethyroidmadness.com/l...

Your hard work is draining what T3 your body is able to produce so it may be time to try a natural hormone as suggested. I'm sure people will let you know by private message how to do so. This is how you would start. stopthethyroidmadness.com/m...

Hello cana

Welcome to our forum.

Your symptoms indicate that you have low thyroid hormone that requires replacing. Hashimotos is a progressive disease, upsetting the homeostatic systems and high antibody levels need to be controlled.

Levothyroxine doesn't suit all but sometimes can be better tolerated with the addition of T3. Alternatives are NDT as galathea has described above and some people take a combination of either.

Before medicating you will need recent blood test results to establish hormone levels. Also people with low thyroid hormone often suffer deficiencies of the very nutrients and iron levels required for good thyroid hormone synthesis.

Ask your doctor to test thyroid hormones and Vit B12, Vit D, folate and ferritin and post results complete with ranges (numbers in brackets) for members to comment.

As you have been ill for a while, your adrenal glands may have been compromised so cortisol levels may be high or low. Balanced cortisol is needed for good thyroid hormone synthesis.

I have had positive acupuncture treatments and think it wonderful. Acupuncture points trigger the release of neurotransmitters and neurohormones reducing pain and inflammation or stimulating secretion of hormones to initiate the body's self-regulating systems. It is a shame it is out of a lot of people's price brackets.

Supplementing iodine can be helpful when there is a deficiency and should be balanced with selenium but is (a little) controversial to use with Hashimotos. However once medicating, iodine is included in the thyroid hormone replacement so it shouldn't be required.

Taking thyroid hormone meds will balance hormone levels and also suppress Hashi attacks.

Adding T3 to T4 (Levo) cleared my brain fog, helped low moods and increased energy levels. However, no thyroid meds will work well without deficiencies being addressed first.

Flower

Hashimotos

thyroiduk.org.uk/tuk/about_...

Hypthyroidism

thyroiduk.org.uk/tuk/about_...

Nutrients known to aid thyroid hormone synthesis

thyroiduk.org.uk/tuk/treatm...

……………………………………………………………………………………………………………………...........

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

……………………………………………………………………………………………………………………..........

Klstevens profile image
Klstevens

Sugar causes depression it makes me suicidal, cut it out and I am as high as a Kyte!

Are you sure levothyroxine is the cause of your depression because the lack of it causes depression for me. Also you need to really get your diet sorted in order for your body to function properly. If I do not have 2 good forms of protein a day I am running on empty! This might not be in your case, you need to find out what your body needs to perform properly.

greygoose profile image
greygoose

Hi Cana, sorry you're going though all this.

The first thing you need to do to take charge of your health is get bloods done - either see your doctor - but s/he is unlikely to do the whole range of tests - or have them done privately.

You need :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

iron

ferritin

Once you have those results, post them on here and we'll get a clearer picture of what's going on.

If you have Hashi's, Westthroid may not be a good idea. It might trigger antibody attacks. However, if you have Hashi's, you probably aren't converting very well, and that's why you didn't get on with Levo. So, maybe the solution is T3 only - your doctor is not likely to give you that, but you can buy T3 on-line, too.

Also, if you have Hashi's, that iodine (in the sea veggies) is probably not a good idea. Yes, as you say, it makes you feel good for a short while, but that is because it stimulates the thyroid to put out more hormone. Your poor gland, which has been partially destroyed by the antibodies, cannot keep this up for very long, so eventually crashes. But the worst part is, the iodine also stimulates the antibodies to attack, so it hastens the demise of your gland.

Your hypo is not caused by iodine deficiency, so more iodine cannot fix the problem. What is needed is something to reduce the antibodies. However, medical science has no idea how to do that yet. What patients have found is that going gluten-free can do it. Or perhaps dairy-free, or sugar-free - or all three! And, also, keeping your TSH suppressed. But you're not going to do that without thyroid hormone replacement (Westhroid, T3, etc).

But, one thing is clear, where thyroid is concerned, it's all a matter of trial and error. Because we're all different, and what works for one, won't necessarily work for another. You have to find out what works for you. You say that Levo doesn't work, but... how much were you taking, and how long did you take it. Nothing will work if you Don't take enough, or for long enough. Everything takes time, with thyroid, and we have to learn patience. So, one step at a time - and the first step is getting those labs done. OK?

Take care. :)

I cannot imagine how you are functioning without meds. Agree with Galathea's post. Please help yourself and get your life back - you are so young! Don't waste time and energy on the nhs; you will get nowhere.

I was also really ill on levo, but that is what Big Pharma pays GPs incentives to shove down our throats. The establishment bullies gps/endos who even think about ndt. Big Pharma can only make money out of a synthetic med, not a natural product like ndt.

It is easier and more economical than you think to source ndt online. I use Thyroid S and it works for me. I would NEVER allow the nhs to (mis)manage my Hashimoto's again.

These nhs gps literally get away with murder; there are so many out there who should be prosecuted.

On ndt although i felt LOADS better, i still had brain fog. Unsurprisingly, the nhs also was negligent in failing to diagnose Pernicious Anaemia (and Coeliac!). So i manage that myself also with weekly shots. I had been injecting monthly for ages, still with minor brain fog - then I experimented with weekly shots and the difference was phenomenal.

So what i am saying is the brain fog, although commonly associated with Hashimoto's could also be from something else. With your Hashimoto's not being managed, it is likely you have developed associated issues.

Please be careful with iodine, it can actually cause hashimoto's too. I was a heavy user of iodine for about 10 years before being diagnosed with hashi.

In addition to ndt, the shots can do you no harm, so are worth considering. Trust me, you can get your health back, you just need to go for it.

Clutter profile image
Clutter

Welcome to the forum, Cana.

UK medications including Levothyroxine are gluten-free. This link lists gluten-free American NDT and includes WP.

thyroidpharmacist.com/artic...

NDT isn't licensed for UK use so it's unlikely to be prescribed on the NHS. Most members using NDT have a private prescription or buy on the internet and self medicate.

When you are optimally medicated brain fog and cognition should improve and your eyesight may also improve.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

beimmunewise profile image
beimmunewise

Hello there!

I, too have Hashimoto's hypothyroidism. It's a bummer to have your own body attacking itself. (actually have four autoimmune disorders) I cannot tolerate extreme cold OR extreme heat. I just got off Synthroid; took levothyroxine for quite a few years now. I asked my Doc for Armour and I am on the third day of taking that, so we'll see. I was dx. with Fibromyalgia due to brain fog and muscle pain and weakness. I am a singer/songwriter but have not performed in awhile due to such low energy. I understand your plight. Have you tried any antidepressants? You should really see a GP for the thyroid swelling even if the seaweed helps to rule out any other thyroid conditions.

Eddie83 profile image
Eddie83

Your situation is similar to mine, except that Hashi's took me out in my 40s. I view Hashi's as an environmental health problem: your antibodies are being triggered by sensitivity to foods, and/or you have an exposure to chemicals (pesticides, perchlorates, heavy metals, whatever). Many alternative health types propose that damage to the gut from poisonous substances causes "leaky gut" and allows crud to get into the bloodstream and trigger autoimmunity. Maybe not true in every case, but that is what set me off.

Most of my problem was due to gluten. My syndrome involved celiac-enteropathy-Hashimotos-hypothyroid-hypoadrenal-hypoproteinemia.

If you can get the NHS to give you the minimum set of thyroid tests (TSH,FT3,FT4,rT3,TPOAb,TGAb) that would be helpful. You should also be tested for nutritional deficiencies and food sensitivities, but I have no idea whether NHS consider those things part of their (limited/capitated) mission. If you can get nutritional testing, make sure your total blood protein is checked in addition to vitamins and minerals.

Kent Holtorf MD (an American boutique doctor) has stated repeatedly that T3 is the best anti-depressant, far better than any of the BigPharma ADs such as Prozac or Lexapro. I have no doubt you would benefit from NDT, or T3+T4. There are gluten-free thyroid supplements available; personally, I use Cytomel+Levoxyl because they are GF. I don't use NDT because I started using synthetics during the Mad Cow scare, and during that scare Andrew Weil expressed reservations about use of animal products.

In the short-term, use of a thyroid supplement would likely be successful in pulling you out of depression so that you can think clearly about everything else. PM me if you want to discuss options for obtaining GF T3, GF T4, or GF NDT. From what I've heard of the NHS, you may have to take matters into your own hands and treat yourself ... which I don't see as a big deal, except for cost.

healthyopinion profile image
healthyopinion

Hello Cana! Don’t dwell on the doom and gloom — we can look forward to ask what we can do today to heal and to protect ourselves.

Autoimmunity or no autoimmunity, thyroid drugs or no thyroid drugs, there are several things you can do to jumpstart a sluggish thyroid and start alleviating symptoms. Diet is your first line of defense. And I don’t mean “dieting” — many people who are struggling with thyroid-related weight gain go on calorie-restrictive diets, which can backfire.

There is no pharmaceutical cure for any autoimmune disease and managing autoimmunity can be multi-faceted. Generally, it’s critical to rethink what you’re eating and to eat whole, unadulterated foods (steer clear of factory-made and factory-farmed food); eat organic as often as possible; supplement wisely; address the stressors in your life; and shield yourself as much as you can from everyday chemicals, including cleaning and bodycare products. It’s a good idea to stay away from sugar and caffeine, both of which can up the ante on the overproduction of stress hormones — namely adrenaline and cortisol — that can hinder thyroid function. Goitrogens — broccoli, Brussels sprouts, cabbage, cauliflower, kale, kohlrabi, rutabaga, and turnips are the heavy-hitters — can also hinder thyroid function by causing a goiter, or enlargement of the thyroid gland. In addition, do not eat a low-carbohydrate diet, which can contribute to brain fog, hair loss, and can inhibit your body temperature regulation. It can also inhibit T3 production and increase Reverse T3, which can block thyroid hormone receptors.

Get protein at each meal. Protein helps boost T3, your active thyroid hormone, and helps convert T4 to T3.

Get plenty of wholesome, dietary fat. Fat and cholesterol help build proper hormonal pathways.

Selenium, found primarily in Brazil nuts and sunflower seeds, helps boost T3 production. Zinc, copper, and iron are also important, as is a range of B vitamins, “the anti-stress vitamins.”

Vitamin D is particularly important, and most people are deficient. Not only does Vitamin D help transport thyroid hormone into our cells and help contribute to proper hormonal pathways (it’s actually a hormone, not a vitamin), it’s also an immune modulator, meaning that it can help modulate and regulate wayward immune function.

There is also a significant mind-body component to thyroid health. The thyroid gland corresponds with our 5th chakra, the throat chakra, and is between the 6th and 4th chakra, which are the head and heart chakras, respectively. Chakra means “wheel” or “turning” in Hindu and our chakras are energy centers in the body. Our throat chakra is associated with the ability to communicate clearly and effectively. When there is conflict between the head and heart, we can have a thyroid imbalance. The best way to work through this conflict is to journal, meditate, pray, breathe, or practice visualization. Any spiritual practice, including yoga, which was designed to support all of our chakras, will help resolve this imbalance.

Hope this lifestyle will help...

Cana profile image
Cana

Thanks everyone for all your support! I will get signed up with a GP this week, as I haven't yet done so in my area as I moved into this area 3 years ago. I will write those down Greygoose, and let the GP know to test all of those to give us a better view of my current level. I'll post the results when I get them.

I was on levothyroxine 85g in California for a little under a year, and when I moved over to England they bumped me up to the closest that they had, which was a higher amount. I am unsure on the exact amounts of either but I do know they were different doses. England did not have the same dose that I had back in California so they had to move me up.

Yeah, I have heard of the back and forth discussions about iodine and whether or not its good for us. It has always been really hard to determine what is healthy. I am trying to stay away certain foods as my thyroid seems to react differently to different things which I have been testing on myself for a few years.

@Healthyopinion, I actually meditate on quite a regular basis. It does help quite abit in calming the body and feeling a sense of healing. I have also been drinking Jasmine tea, which does help with my concentration.

I will try and press for NDT on the NHS, if not which brands are relatively cheap? Honestly hate to put a price on health, but that's sort of the world we live in at the moment.

Also just had brusselsprouts, parsnips, and several other things in my christmas dinner. I will try and stay away from those from now on as my thyroid is starting to swell. Wish I read those replies before I had dinner haha.

I'll be popping on alot more frequently, you guys have been really helpful!

Thank you.

Cana profile image
Cana

ebay.co.uk/itm/RAW-THYROID-...

Looking into buying something to try out. Anyone have any experience with this one?

greygoose profile image
greygoose in reply to Cana

Cana, what exactly do you want it to do?

This is advertised as a 'dietary supplement', which means that it contains no hormone - otherwise, it would be presciption only. However, it might contain a little - no idea how the get rid of all the hormones - but you have no way of knowing how much. So, it isn't going to replace proper thyroid hormone replacement, like NDT.

It contains iodine, so it's obviously intended to stimulate the gland - or, as some say, 'kick-start' it (which is impossible with Hashi's, all you do is 'kick-start' the antibodies which destroy your gland even faster).

Remember, you do not have a thyroid 'problem', you have an immune system 'problem', so trying to heal the thyroid gland is pointless. You need to address your immune system. Save your money for something more useful.

Cana profile image
Cana in reply to greygoose

Hmm, I think it was mainly the "comments" about them that sold the product to me. Not sure if they can be verified as they were posted in the listing of the product on ebay (As ebay doesnt have a place for reviews on the item page)

" From Arizona

Raw Thyroid gives you more energy and also a better mood. I take meds for Hashimoto's Thyroiditis, but no longer feel it's working for me. I take this with Thyroid Energy and have felt much much better, so will continue to take both. "

However what you are saying really concerns me, When purchasing I was actually looking for NDT, I thought this was one version/ brand of NDT. Could you send me a few brand names to look for or perhaps a link to one you would recommend?

Thanks!

helvella profile image
helvellaAdministratorThyroid UK in reply to Cana

If you go to the main ThyroidUK website:

thyroiduk.org.uk/tuk/treatm...

Then click on Non-UK Desiccated Thyroid (aka NDT) on the purple band. That will give you the main prescription-quality desiccated thyroid products.

If it doesn't say exactly how much thyroid hormone it contains, it might not contain any. Or its content might vary.

There are at least three companies using the term "raw thyroid" - and at least several more which could easily be confused with that name. It is an unpleasant mess.

Clutter profile image
Clutter in reply to Cana

Cana, Armour, NatureThroid, WP, NP are American NDT, Erfa is Canadian NDT, and Thyroid-S and Thiroyd are Thai NDT. 1 grain (60-65mg) NDT contains 35-38mcg thyroxine (T4) and 8-9mcg T3 depending on brand. Supplements and raw glandulars don't state whether they contain active hormone, or if they do, how much, because they wouldn't be able to sell OTC otherwise.

I linked to which of the American brands are g-f in my reply above.

Cana profile image
Cana in reply to Clutter

Thanks! Will write those down. Getting an appointment booked at a GP up in north. They have a lab in the building so it shouldn't take too long in getting my blood results back hopefully.

I will hopefully be able to get onto one of these NDT through NHS.

Thanks everyone for your help, I will let you know how it goes.

Clutter profile image
Clutter in reply to Cana

Cana, Levothyroxine is the 'preferred' (by the BTA and Society of Endocrinologists) therapy for hypothyroidism. NDT isn't licensed for UK use and is very rarely prescribed on the NHS. Most members using NDT have private prescriptions or buy online and self medicate.

Cana profile image
Cana in reply to Clutter

Yeah, thats what I was told. They still stock it in pharmacies however and do give it out rarely. Apparently its like pulling teeth to get it. Just going to try my chances as I am on really low funds at the moment.

I honestly think its possible they kicked NDT out of the system so they can make more money from levothyroxine.

Clutter profile image
Clutter in reply to Cana

Cana, NDT dropped from favour in the UK when Levothyroxine became cheaper in the 70s. Thai NDT is the most affordable if you have to self fund.

Cana profile image
Cana in reply to Clutter

Ah thanks for clearing that up! :)

Will have a look into Thai NDT to see if there is a possibility in getting it here without too much hassle.

How long has Levothyroxine been around?

Clutter profile image
Clutter in reply to Cana

Cana, I think Levothyroxine's been around since the 70s. Thai NDT is only available online afaik.

greygoose profile image
greygoose in reply to Cana

When you have your blood test, make sure it's as early in the morning as possible - before nine - and fast. That way you will get the highest TSH possible. And, therefore, the best chance of getting prescribed.

Cana profile image
Cana in reply to greygoose

Thanks! I will do that. Also with those supplements I ordered by mistake. It is too late to return them I believe. Would it be worth trying them out and seeing how my body reacts to them?

Honestly getting worried about my memory. My brain seems to be placing things into two categorys temporary and permanent. Permanent is attached to a mood like being mad for example. Temporary is words, what I just ate, what I ate yesterday, what I did today / yesterday. I honestly cant remember what I did yesterday, nor can I tell you what I ate. However I can tell you of a time a month ago when I made food and was very proud of it.

At work I really struggle with memory and paying attention to what people say. I am having to attach things to muscle memory through repetition in order to go through work normally. Such as automatically bringing out a bin bag and placing it above the bin in an awkward location right above, before I even touch the bag that needs to be taken away. This can also be said for when I am on other tasks. However this becomes a huge struggle should I not be able to complete that cycle. Like if the bags are upstairs instead of in the closet. Therefore allowing me the chance of being distracted and completely forgetting again.

Also sort of strange, kind of normal I believe. Forgetting dreams as soon as you wake up. I have not remembered a dream in I think around 6 months. But I can remember nightmares or other dreams from 10 years ago.

greygoose profile image
greygoose in reply to Cana

Well, that all sounds very hypo. And I think a lot of people know exactly what you mean because they've got the same thing. I certainly have!

I Don't know if it's too late to send the pills back. Ask the vendor on eBay. Just send them a message.

Cana profile image
Cana in reply to greygoose

Just had my blood drawn early yesterday at around 10:00. New GP signed up near my moms house in northern England. A very nice Chinese doctor on the NHS. She also cares for both of my brothers with hemophilia. Her immediate thing to do while waiting for the bloodtests was to give me levothyroxine, as she printed off the prescription I told her of the bad side effects that it had on me. She then withdrew that and did not assign it to me. I told her about the natural thyroid versions such as Armour thyroid, and gave her @Clutters list of the different versions and what areas they can be found. She said she will do her absolute best in trying to get me a version over here, as I prefer natural medicines. She said she will have to talk to someone, and get back to me with my blood test results by around Thursday the 7th or sooner.

I forgot to give her the list of things to have tested, I did however give them to the person drawing my blood, however she said only my doctor can advise those things. (So I assume I'll have to grab them another time) Can she test those with the same blood sample she has now?

greygoose profile image
greygoose in reply to Cana

Dépends how much she took. I really Don't know about that side of things.

Be aware that around 10 o'clock is not early for a thyroid blood test. And the TSH will be slightly lower than it would at 8 o'clock. Did you have breakfast first? If so, that will also lower your TSH.

Also, NDT may sound 'natural', but it's not as natural as all that. The pig thyroid has been processed, had fillers added to it and been compressed into a pill. It doesn't suit everyone. Some people, like myself, do better on synthetics. I'm on synthetic T3 only.

Cana profile image
Cana in reply to greygoose

Unfortunately they told me I should eat before the blood test, I thought this was strange. They took one vial.

Hopefully she calls tomorrow with the results.

greygoose profile image
greygoose in reply to Cana

Hmmm They just know nothing about it! I bet they have no idea that eating lowers the TSH.

I Don't think you can do much with one vial, but no harm in asking. :)

Cana profile image
Cana

To test this product I found online (Raw Thyroid from ebay). I would kindly ask us all to avoid it.

I can say from experience now that it is very hard to control the side effect of irritability.

I documented the entire day in cycles of change. I hope this all helps you out. I felt I would be the best candidate to test it out as I never take medication for anything and I was in a controlled environment. Honestly it felt absolutely amazing for most of the day, however I think it was stimulation from the adrenals of the ginseng that is in it. Please also note the fact my typing through the day changes quite abit. I was not able to think of as many things to mention as the affects were wearing off. This capsule gave me the feeling of being 100% for a good portion of the day. Eating bad food tampered with it.

--------------------------------------------------------------------------------------------------------------

Taken at 10:40 . Initial effects after 20 minutes, warmth and a tingling feeling of energy, excitement.

After an hour it feels the same. I can move my fingers freely and I do not seem to have a limit on speed.

My breathing is easy, my throat feels empty. It feels hollow allowing air to travel unhindered. I can also look up and breath without my thyroid gland/ adams apple causing me to choke abit. This is the same for swallowing.

Light sensitivity is not as much as a problem. It is a cloudy day, however the sun is still quite bright.

At 12:21 I feel these have not changed. I hope they will not go away.

vegetable oil in air has a starchy effect on throat

1:18 PM after eating vegetable oil deep fried hashbrowns and curly fries my body feels slowed down again. Heavier slightly lethargic. Noticibly colder.

2:28 PM The lethargic feeling slowly passed. I assume it was due to the unhealthy food and the unhealthy way it was prepared. My body is regaining the warmth. I have a tingling feeling of what

I believe to be excitement in my stomache. I feel like running and expending energy. My heartrate is a tiny bit faster, but this is most likely due to the execitement of having energy. It is not abnormally fast, my breathing is steady and normal.

My fingers can move freely as if weightless again. I have the urge to go walking into town despite it being quite a dreary cloudy day. This is completely abnormal behaviour for me. - 2:36PM

At this time I have the assumption my memory is better, without the need of triggers to trigger memories. I was able to recall what I forgot earlier when looking for something within a few moments.

2:45PM Assumption: Hair producing more oils..? I washed my hair at 10:00 PM on the 28th.

5:18 PM my left hand is feeling a tad impairment of movement. Not as free as before. I am unsure if this is also happening to my right hand. My left hands fingers feel as though they are slightly swollen. However this is not the case at all

There is no swelling, my heart rate is also normal and steady. It still feels lighter, and more free than usual when moving my fingers at speed opening and closing. I am completely unsure, but I feel my memory is slipping. Forgetting tiny things.

Such as, going to the fridge to get milk for tea, but it turns out I had already done so. I dont have the same feeling of wanting to expend energy. 5:27 PM

6:15 PM I feel tired, my hands are slower.

12:34 AM all good effects gone entirely, easily irritated, very distracted. Hands and energy back to how they were before I took the raw thyroid capsule.

Cana profile image
Cana in reply to Cana

Note, The day after. Irritable tenancies seem to be gone. The want to try it again is quite strong. But after re-reading my notes I do not. These are my experiences with the product with zero medication, in an environment with not much that would influence my behavior. Whilst the "feeling good and happy/ energetic" effects were coming down I noticed I was having violent thoughts and had violent scenarios playing through my mind.

I am happy to be able to see myself in the third person and correct my behaviors as they come. Unfortunately this medication did put a strain on my balance over that. I was able to overcome that, however I believe these symptoms could escalate over a few days of taking them. My thoughts is that symptom is related to the adrenals in the ginseng that was put inside of the mixture.

I would be very interested to hear your thoughts on this theory.

greygoose profile image
greygoose in reply to Cana

Why blame the ginseng when it also contains :

Thyroid Tissue, Adrenal Tissue, Pituitary Tissue, Thymus Tissue, Spleen Tissue, Maltodextrin

It could have been anyone one of those. The adrenal tissue could have contained adrenalin.

This is one of the reasons I Don't like these concoctions - a few herbs here, a few vits there, and we'll toss in a bit of this for good luck! If it upsets you, you never know which bit it was. And, although it's advertised as 'Raw Thyroid' (and it can't be that raw or it would soon go off) with all those other body parts in it, I'm not sure what it's supposed to do.

Cana profile image
Cana

Blood test back, I received a call from my GP.

Thyroid levels within normal range. Going to start me on a low dosage of levothyroxine and see how it does for 3-4 weeks. She was unable to prescribe the NDT. (I took the bloodtest the morning after having a meal at a Japanese sushi bar. Iodine rich foods. Sashimi, sushi (with nori)etc. Also having eaten before bloodtest as doctor told me to.) Blood test was taken at roughly 10:00 AM

Are there any specialists I can go to in/ around Bedford England?

You may also like...

Hypothyroid without Hashimotos?

results which indicate I have no thyroid antibodies, ie. IMM Thyroid Peroxidise and IMM Thyroglobin...

Hashimotos Hypothyroid

hypothyroid 12 years ago. I have Hashimotos also. The struggle to lose weight has been very...

Hashimotos hypothyroid

Having some strange symptoms lately. Head pressure and neck stiffness. Just not feeling right. Had...

Will I die if I'm without medication for Hypo Hashimoto

I don't need because it's only prescribe if you have Graves or are hyper. I'm wondering if she even...

Please help! Hypothyroidism (Hashimoto)

has some answers to medical issues l have been experiencing for years. My many Drs can’t seem to...