Confused newbie looking for best route to start... - Thyroid UK

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Confused newbie looking for best route to start research

ThyroidOdyssey profile image
53 Replies

Good evening all,

I’m a complete newbie, diagnosed this week with primary hypothyroidism. To be honest I’m in shock, I’ve hardly taken a paracetamol before so when the GP said I needed to take lifelong medication, I was completely floored and I still am. I am desperately trying to find a way of avoiding it by trying to understand root cause and make any lifestyle changes that I can. I have started research, a lot about underlying gut health so far. But I’ve realised I’m very at sea, I don’t really know where to start, perhaps I don’t have the full set of results I need (T3?) and perhaps I am being unrealistic in thinking I can crack this on my own, I’m sure many others have tried! Does anyone ‘further down the line’ have time to give me any initial thoughts or pointers please? T3 hasn’t been tested, only T4 (10.9) Ferritin (24 uh/L) TSH (14.2 mu/L) B12 (352 ng/L) peroxidase antibody (536 iu/ml) Full blood count (satisfactory). Is it hopeless thinking I can avoid medication? Which I will be absolutely grateful for if there is no other way, as I don’t feel good currently. Thanks so much to anyone who might have time to give me any thoughts.

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Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group.

Obviously the primary hypothyroidism diagnosis has come as a shock to you having been fit and well previously. I'm sure that's the same for many of us. Did your GP tell you that it's an autoimmune condition called Hashimoto's? Your raised antibodies tell us that.

You might be interested in this thread where someone else was looking for the root cause.

healthunlocked.com/thyroidu...

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Jaydee1507

Thank you for the welcome. I think I've landed back on Earth and got my head together a little more now! Yes, I spoke to the GP the second time to ask if it was that and she confirmed it. Thanks for signposting me to the root cause thread, what a journey people have been / are going on.

Jaydee1507 profile image
Jaydee1507Administrator in reply to ThyroidOdyssey

Give it a week or two if that's what it takes, let it sink in. As someone else pointed out damage has already been done for you to get a diagnosis and there's no real going back I'm afraid.

In my opinion we each have genetic tendencies to develop autoimmune condition/s. Sometimes that can be triggered by life events, illness, childbirth etc. Can't change that.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Jaydee1507

I think that's what I need, thanks. I've almost accepted there is no going back, but not quite! My brother has terrible autoimmune issues, Guillain Barre syndrome most recently. I always got off lightly with a bit of hayfever! But here we are.

Jaydee1507 profile image
Jaydee1507Administrator in reply to ThyroidOdyssey

Just start a new post if you have more questions, that's what the group is here for. It's a pretty rubbish diagnosis unfortunately and it will be quite a few months before you feel noticeably better than you do today once you start treatment. It is what it is.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Jaydee1507

thank you, wasn't sure on the starting a new post thing. It is what it is, indeed.

arTistapple profile image
arTistapple in reply to Jaydee1507

I remember reading the thread you refer to above. I remember also thinking when I read it (because it’s a popular route for some ill people to follow, especially in America) that almost anyone who has had a baby will have had an injection containing ergot - a fungal/toxin. It’s used to stop excess blood loss after childbirth. In the seventies there were stories going the rounds that women who had previously taken LSD, were having hallucinations after having the jabs. Who knows? Since so many women become aware that ‘something is not quite right’ after having a baby, it’s possible that there could be some connection. However that theory could easily be blown out of the water if no jab has ever been given.

tattybogle profile image
tattybogle in reply to arTistapple

i might sink that theory arTistapple.. home birth .. no drugs , no ergometrine ... probable mild Hyper phase about / 2/3 months later went a bit nuts and became very thin .... then went gradually more hypo (although not diagnosed for 4 years)... TPOab >3000 .

arTistapple profile image
arTistapple in reply to tattybogle

I get what you say and it is only a brief theory. I think there is unlikely to be one definitive cause. If it works out there is only one cause, we can all celebrate and stop it from happening again (maybe). It’s much more likely to be a group of causes and probably pertinent to individual genetics and stress load. Maybe it’s dealing with accrued stresses but it was an argument put forward in cancer too, until lots of young people, even newborns started to suffer from that. Something generationally accrued? Thinking of the holocaust victims and their children here. It’s an holistic viewpoint and I can’t help comparing it with the nature of hypothyroidism and seeing what a ‘wholeistic’ condition it is. It affects everything in the body, a lot of which is very individual in its grouping of manifestations. There is the basic model the NHS puts out but we know it is far more complicated than their model. OMG I am stopping here.

tattybogle profile image
tattybogle in reply to arTistapple

lol .. i think that's basically why 'autoimmune thyroidology' doesn't really exist as a 'specialism which attracts the brightest and most enquiring minds' ...... the brightest and most enquiring minds probably took one look at it and realised it's going to be a career in knitting fog.. and go off to study something that offers more tangible stuff to try their knitting skills on .

arTistapple profile image
arTistapple in reply to tattybogle

And a group of medics holding on like grim death to their acquired status among a lot of others grasping at same. No room for actually practising medicine.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to arTistapple

fascinating. I suspect I had that and then some, if the same thing is in the UK jab, I bled heavily post my first baby / traumatic birth and that is the point I would say that my general health began pivoting.

PurpleNails profile image
PurpleNailsAdministrator

Welcome

Has your doctor suggested starting thyroxine replacement? If so what dose? 

Many don’t consider it a drug, it’s a necessary replacement hormone.  

Your TSH is above the threshold considered overt hypothyroidism (10).

Lab machine have different ranges & by many ranges your FT4 is under range. Can you add the ranges?

 Improving nutrients, which are low likely due to becoming hypothyroid will help the replacement thyroxine work well. 

ThyroidOdyssey profile image
ThyroidOdyssey in reply to PurpleNails

Thanks for the welcome and thoughts, it's so wonderful to have this community here.

Yes, my doctor has suggested thyroxine replacement, 50mg p/day as a starting dose.

Ah, I see about the range. It's [12.0 - 22.0]

I've done some more reading today about raising nutrient levels thank you, I'm going to try and boost everything that I can. My GP said it wasn't dangerous to delay taking the thyroxine replacement and my thought was, I should try and do some boosting (!) before I do, try and level the pitch as it were. But I've no idea if that's the right approach really.

tattybogle profile image
tattybogle

Hi there. Welcome to the knackered thyroid club .....

first thing to understand .. it's not 'medication' as such.

your thyroid makes thyroid hormones ( T4 and T3 )~ until it can't ~ for some reason ( usually the reason is because it's been attacked by the immune system and damaged )

Then .. you need to take T4 to replace the T4 your thyroid isn't capable of making making .

T4 is the same stuff . wherever it comes from ( it's 4 iodine molecules )

(T3 is 3 iodine molecules ... the body makes this out of T4 by removing one molecule )

So you're not taking a drug as such .. it doesn't have side effects as such , ... it's just a matter of getting the amount right , which can be a bit of a problem ..... and getting the balance of T4 / T3 right , which can be a bigger problem because a healthy thyroid could previously adjust its production of T4/T3 'automatically' (controlled by TSH as part of a complex feedback loop called the "HPT axis" )

TSH( Thyroid Stimulating Hormone) is a 'control message' from the pituitary( brain) to the thyroid 'asking' it to make more T4/ T3 .

It stays around 1 or 2 when the brain is happy with the amount of T4/T3 in the body ,, it rises higher to ask for more T4/T3 to be made when it senses the T4/T3 levels are too low. and the healthy thyroid responds by making more ... but if the thyroid can't manage to make enough anymore the TSH keeps going up ..

and basically , by the time you've got a TSH of 14 ( assuming the cause of the low T4/T3 levels was autoimmune damage to your thyroid )... your thyroid is already so damaged that it doesn't really matter what you do .. it won't ever be capable of making enough T4 / T3 for you again........ so you can't stop it happening .. it's already happened ... you've just got to figure out the best way to replace the right level of T4 and T3 for you .... and what else to do to help the body make the best use of the T4 you give it.

Did your GP say anything about an autoimmune cause when they diagnosed you ?

tattybogle profile image
tattybogle in reply to tattybogle

oh.... i've just noticed the Thyroid Peroxidase antibody result of 536 ... so yes you do definitely have autoimmune hypothyroidism ... you're definitely stuck with a knackered thyroid i'm afraid. it's been structurally damaged by your own immune system and it's not growing back. .. and you will need to take thyroid hormone to replace what it isn't capable of making.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to tattybogle

thanks for the welcome, it's a club you'd never want to be in but I must say, it has some very knowledgable and helpful members, so there's that! I think yours was the message I really didn't want to hear but possibly needed to. It made me bawl my eyes out and get really pis*ed off! (ha!) It's too late for many of the tactics I would have liked to have employed I now see. I'm wondering how long it's been going on, I read somewhere today that it could have been a decade in the making. Gah! Anyway, thank you for the comprehensive information, and the

tattybogle profile image
tattybogle in reply to ThyroidOdyssey

yep sorry... it was bit of a 'blunt instrument' wasn't it .. please note .. what i didn't say while i was so busy explaining the how and why of "it being a bit knackered now " is that none of that means it's not still a VERY good idea to optimise everything else you read about on here either first/ or at the same time as replacing your low thyroid hormone levels ..whatever the outome ~ your body will definitely function better and make better use of whatever thyroid hormone it has (wherever it comes from) with decent vitamin levels/ selenium levels etc .. and avoiding gluten is always worth a try etc.

As for trying to reduce your antibodies ... certainly also worth a try~ as if they go down significantly (and stay down) it would indicate your immune system has slowed down on the business of "eating your thyroid" (as my GP put it) .. the antibodies don't do the damage to it .. they are basically labels saying 'clear up this mess' after it has been damaged by the immune system .

So if you do find a diet that seems to reduce them , then why not give it a go .

But just be aware that they will go down over time anyway .. mine were 2499[0-50] at diagnosis .. then they were >3000 when the GP checked 6 weeks later to see it wasn't a mistake. 15 yrs later they were only 195 .. and i ate gluten every day and smoked 3 fags a day for those 15 years . ( not recommended .. obviously).

But my point was ~there's no evidence anywhere that any of that other 'good stuff' you do can 'undo' the damage to your thyroid that your immune system has already done .

posthinking01 profile image
posthinking01 in reply to tattybogle

Brilliant comment !

Pooty profile image
Pooty in reply to tattybogle

wonderful explanation thank you so much

Pearlteapot profile image
Pearlteapot

check your vitamin D and B 12 levels and if needed supplement those straight away. Vitamin D3 & K2 (MK-7) in Organic Black Seed Oil (30ml) High Strength Liquid (3,000IU). MK-7 is 100% Trans. Immune Support Sublingual Drops (Made in The UK) amzn.eu/d/7gPgMd1

Medichecks advanced thyroid test for D and B12 and folate testing. Read read read. I wish I could offer you something else. I wish I could have avoided levothyroxine. You probably won’t avoid it but try. I was very low on D and felt immediately better when proper levels restored.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Pearlteapot

thank you for your kind comment, I do want to try and avoid it, but much of the reading I've done today suggests that I won't. I'm sorry you couldn't either. I think I am going to get the Medichecks tests thank you, once I'm sure of everything I need to be tested for. I've got my B12 but perhaps the private tests are more accurate. Read read read, oh yes, and podcasts in the car, I think half the shock yesterday was realising how much time this is going to need, who's got that?!

Charlie-Farley profile image
Charlie-Farley in reply to ThyroidOdyssey

I had a few cries about being on replacement for life, but when I started to feel alive again I was just so blooming grateful. Mind you my doc under medicated me for 6 months and I was diagnosed by a guest (only confirmed by my doc).

Click on my face and You can read my profile - I wrote it as a case study with a few useful bits in (hopefully) to stop others going the same way and being able to see when doc is floundering and not going along with it. Your doc wanting to start you on 50ug is a good sign but they need watching! You read in your spare time for a few weeks and you will be more informed than most doctors who don't even follow the guidelines. NICE and NHS guideline are a good start. They obsess about TSH but many people's TSH does not correlate with a therapeutic dose of thyroid hormone replacement. The guidelines give them (doctors) latitude to work towards the patient's well-being BUT! most doctors don't know enough to use that latitude, so doggedly stick to ranges in blood tests and end up treating the lab work rather than the patient.

I've been a bit of a steamroller in my local surgery and I am on a therapeutic dose with a supressed TSH - had I been dosed according to my TSH I would have been on the same dose as my 4'11" 6 1/2 stone friend - I am 5'8" and 15 stone -yep need to work on that! 😂

A Land Rover won't get far on a tank of fuel meant for a Mini! 🤣

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Charlie-Farley

thank you, yes, I am swinging about on the crying / relief axis somewhere already, you've been on such a journey! I'm familiar with the not treating the patient thing, sadly from almost every (scarce) encounter I've had with the medical world, so I at least have that familiar context to go on, even though thyroid is a new playing field...I haven't actually read the NICE / NHS guidelines so will do thanks. Keep steamrollering away! Best of luck.

Charlie-Farley profile image
Charlie-Farley in reply to ThyroidOdyssey

Awww thank you and you too and remember this forum is a tremendous support and there for you🤗

Hennerton profile image
Hennerton

Welcome to the site and I am going to cheer you up by saying it is not as bad as you think, although it must have been a dreadful shock, unless you have been feeling very unwell for some time? If so, be glad that you now know what is wrong and can start on life giving hormones. I feel sure one of the admins will give you advice on how to take your Levothyroxine ( very fussy hormone and does need to be taken with a glass of water and a long gap before eating) To be honest, I only leave an hour but others say longer.

Be sure to ask for all details of your blood tests, including the reference ranges ( usually found in brackets) and keep these to monitor how you are getting on. Learn as much as you can from this site by asking questions.

If you eventually find you are still not feeling well, there is another hormone, Liothyronine, that may help you but is rather difficult to obtain from your GP. You can ask more about it later, when you have been on Levothyroxine for a while and in any event, you may be fine on Levothyroxine only and never need to know more. Nevertheless, it is good to know it exists.

Ask away and other members will respond. This is an amazing site and will help you to become an expert in all thyroid matters. You will soon feel much happier and more confident. I recommend a new notebook to become your best friend, full of tips and information from all the knowledgeable members here. Good luck with your journey. It will become easier from now on.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Hennerton

Thank you for your kind message, I've been feeling not like myself since the pandemic, which I thought was responsible for my feeling seriously flat and down, on occasion, for the first time. It was followed by a gradual feeling (I was never sure) that my hair was thinning, and that I was at times, exhausted to the point of needing to stop what I was doing and lay on the sofa. Some extremely heavy bleeding, which I thought was menopausal. Recently I've been freezing cold all the time. I just never put it all together.

I will get organised with a notebook and track all of the results thank you, including the reference ranges, and it is very good to know that there is another option if the Levothyroxine doesn't help. Thank you again for your reponse, I was feeling so lost yesterday, and reading that it will get easier, as it of course will with knowledge and confidence, was a great help to me.

Regenallotment profile image
Regenallotment

Hi there Hashi 😊

I found the advice here the number 1 most useful thing. No 2 was reading Izabella Wentz books, highly recommend.

Ask lots of questions 👍

🌱

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Regenallotment

I've ordered one of Izabella Wentz's books today thanks! And the advice here which I'm reading in some of the existing threads is so incredibly helpful. Thank you.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

T4 (10.9)

Ferritin (24 uh/L)

TSH (14.2 mu/L)

B12 (352 ng/L)

peroxidase antibody (536 iu/ml) 

Please always add ranges on results…..especially Ft4 or Ft3

Annoyingly different labs have different ranges

Ft4 10.9

Is range 12-22 (most common)

Is this your first abnormal thyroid test

Has GP prescribed levothyroxine

If so what dose?

Standard STARTER dose is 50mcg

Bloods should be retested 6-8 weeks after each change in dose levothyroxine

When hypothyroid we frequently develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Ferritin (storage form of iron ) is currently deficient as is under 30. Optimal is at least 100 ….minimum you want is at least 70

GP should test full iron panel test for anaemia

Also Vitamin D and folate and coeliac blood test too

Are you currently taking any vitamin supplements

Is there autoimmune disease in your family?

ThyroidOdyssey profile image
ThyroidOdyssey in reply to SlowDragon

Thank you for helping, I didn't even realise the bracketed figures were ranges until you and others told me!

T4 (10.9) [12.0 - 22.0]

Ferritin (24 uh/L) [10.0-300.0]

TSH (14.2 mu/L) [0.27 - 4.2]

B12 (352 ng/L) [180.0 - 1000.0]

Folate (16.6 ug/L) [>4.0]

peroxidase antibody (536 iu/ml) [0.0 - 25.0]

I had some general blood tests done in October 2022 before we honed in on the thyroid. The relevant ones I think are:

Ferritin (7 ug/L) [10.0-300.0]

TSH (6.2 mu/L) [0.27 - 4.2]

I started supplementing with iron after this test, obviously not enough! I've supplemented with vitamin D and C (a bit sporadically) for a long time.

GP has prescribed starter dose 50mcg levothyroxine and blood tests 6 weeks after.

My Brother has had terrible autoimmune problems throughout his life. Most recently, the horrible Guillain Barre syndrome.

I think I am going to get myself tested privately for everything you mention, and T3, and try and get a complete baseline before starting the levothyroxine. I can only get some of them done with the GP whereas I presume I can get the full suite if I pay privately. I was planning on trying to boost certain nutrients first, to try and give the levothyroxine the best chance. But still researching my plan. Does it sound sensible to you?!

maggiesloper profile image
maggiesloper

Everything stated above is perfect advice and so please do t be shocked as you can live a perfectly normal life by simply replacing the Thyroxine your body is no longer capable of manufacturing. My only additional tip is for controlling the Thyroid Peroxidase Antibody (TPA). Add 3 drops of selenium solution to your water every morning as it inhibits the TPA and reduces the levels of TPA which are thought to be related to Hashimotos disease, the auto-immune response which is "attacking" your thyroid hormone production. I have managed to successfully reduce mine over a few months from very high levels like yours to around 30iu/ML. Good luck !

Pearlteapot profile image
Pearlteapot in reply to maggiesloper

I think this statement is not correct, at all.

My life doesn't feel perfectly normal with thyroid replacement therapy. Many people in this forum do not have a normal life either. We struggle with continuing symptoms, the most common is endless fatigue and brain fog and weight gain. Some people have such bad brain fog and fatigue that they lose their job. People are in a never ending quest to find the correct replacement therapy and devote huge amount of resources in time and money to the same. For some people who are on too low a dose they actually have less thyroid in their body than at the time of diagnosis and feel very much worse as a result. That was certainly my experience.

I was diagnosed with a very high TSH of 70 but level of TSH does not necessarily correlate with symptoms. I was practising fairly intense yoga and cycling everywhere just before diagnosis. After starting Levo all that had to stop. My normal life stopped. I wish I had tried to improve function with all other means before starting on this nightmare journey. A pointless ambition many will say. I do recognise that low thyroid levels also have serious implications for cardio vascular and kidney health and many other vital functions but this is true whether the levels are low because of poor endogenous production or insufficient medication.

tattybogle profile image
tattybogle in reply to Pearlteapot

True Pealteapot , some people don't do well at all..

Some only do well once they've figured out a few other things (more than the GP's standard "take this little white pill and you'll be fine in few months..." )

Some do very well for 10 or 15 yrs and then hit problems ,and show up on here then .

but plenty of people do in fact do very well once their hypothyroidism is treated , and never have any need to come on a forum looking for help.

So the sample of people on here is not representative .

If we believe the 'research' .. the proportion of people who have ongoing problems is about 15%... i and most others on here think it is likely to be a much higher % than that ,, but probably still 'a minority' , compared those who don't have any significant ongoing problems.

So when talking to someone who is at the beginning of the journey who hasn't experienced any problems yet ( and is already shocked and scared about their future ) ,, it seems better to be optimistic and not assume they will have problems unless it happens .

Pearlteapot profile image
Pearlteapot in reply to tattybogle

That might be right for some people but I wish I had been given some warning before I started my journey. I was completely unprepared for what happened to me, did not know it was a common experience and as a result my anxiety went through the roof. If you are told take the pills and life will be normal, and then it isn't, you have been misled and deprived of agency.

tattybogle profile image
tattybogle in reply to Pearlteapot

fair point . The perspective is naturally different if you'd felt basically well before levo was prescribed than it is if you'd already been really struggling to function for a few years by that point .. i was the latter .... so sometimes i do forget to consider that 'not taking it yet' might be a better option for someone with a different experience to mine .

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Pearlteapot

thank you for this valuable point of view, I'm so sorry to hear what you've been through. I must say that this scenario is one that I'm very worried about. Actually feeling worse off, and then no going back. Also one's life being utterly consumed in a financial, time and mental sense with finding the solution, that also terrifies me. Thank you for this insight, I wish you well. I've feared for my job of late, I'm freelance, support myself and my two children on my own and I need that clear brain, of course we all do.

Charlie-Farley profile image
Charlie-Farley in reply to ThyroidOdyssey

“Actually feeling worse off, and then no going back.”

There’s no going back on this sadly. The sooner you get onto full replacement dose and get your vitamins and minerals Optimal the better. The delay in diagnosis and treatment seems to be a running theme in ongoing complications. If you read posts and other people’s stories it tends to jump out. I think I was hypo for at least ten years. I put my relatively well state down to finding out I was being mismanaged relatively quickly.

I see the human body in the same way as an ecosystem. If you let it degrade to a point you can still recover it, but if you let the degradation go too far, things are lost.

Jump in and get started as quickly as you can and be positive and pace yourself and be kind to yourself and make sure everyone around you understands that it’s not just taking a little white pill. Certainly not in the early stages when you are getting onto a full replacement dose.

SlowDragon and others gave me a great deal of information when I landed here a couple of years ago, I worked through it diligently and followed the advice. The posts still sit on my profile.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to maggiesloper

ah thank you! I didn't know there was a solution, I've been lurking in the Brazil nut aisle. Thank you for your encouraging message.

Bambam22 profile image
Bambam22

Good morning my journey started just short of a year ago. It was a complete shock and unexpected. I went to the GP to address bowel movement changes. Got diagnoised with underactive thyroid. GP focussed on that and never returned to my bowels 🤪I too wanted to understand what did a lifetime of medication mean? I wanted a scan, I wanted to know why, I wanted anwsers.

But instead I got frustration. GP only interested in bringing me into the TSH range first.. This is common as I have found upon joining this most fabulous forum. Symptoms were secondary, not helpful.

My quest for knowledge began it has been amazing and enlightening, I have been able to make lifestyle and dietary changes that have had a profund positive impact.

Prior to joining here, which took me a good few months post diagnosis. I felt alone and in the dark. I started listening to Dr Gupta who got me thinking about:

Deficiencies, food, toxicity, and stress

I found Dr Balcavage amazing, read his book Thyroid Debarcle this lead me to also consider sleep hygiene and proper breathing, life changing for me.

I follow hypothyroid chef and have given up gluten and limit dairy, feel amzaing with this change.

Joining this forum I have accepted I need medication to give me what I am lacking and found regular testing helps me keep my vital vitamins: B12, folate, ferritin and D just where they need to be. This was a journey and still ongoing with ferritin but I feel more in control.

I do SOMA and Wim Hof breathing and do cold water immersion, whether they help my thyroid directly who knows but they have made my journey better.

Best of luck x

Regenallotment profile image
Regenallotment in reply to Bambam22

hey Bambam22 this is so inspirational, thanks you for sharing. I don’t know how you do Wim Hoff, we watched his tv show but brrrr🥶 i can’t even do 2 seconds in the shower 🤣 my nephew is a massive fan and tells me I need to breathe 🫣 it’s really great to hear other’s positivity 🌱🦋🌱

Bambam22 profile image
Bambam22 in reply to Regenallotment

Wim Hoff series was out of this world and I must admit I got under my hot blanket to watch it 🤣Wim has some fab breathing exercises on you tube and I have nearly finished reading his book Wim Hoff method very thought provoking.

The shower thing is on another level and wow, that brain freeze gets addictive.. just off for my daily indurance now -90 secs❄

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Bambam22

Thanks for this uplifting story! That's it, I want answers! I was the same when I had a hernia, got to the root cause and sorted it. Gestational diabetes? No problem. Lifestyle changes, demand more tests and sorted. I like to think I can control everything and figure it all out and solve it! Same with destroyed thyroid. Not! I would like to find the same sort of balance that you sound like you have found. I am ready to make changes, I am ready to take the hormones (and be thankful for them), I just need to figure out the plan. My first big question is, shall I carry on trying to counteract Hashimoto's, if it's already won. Is it still there? Or do the adverse conditions in my body mean that it doesn't matter if it's Hashimoto's or not, I need to change the conditions regardless. Anyway, just setting out and reading about stress, inflammation, gut - you know the drill! I just want to feel a bit more in control and have a sense of a 'plan', a goal even. I hope that will come with time as it sounds like it did for you. Wishing you well and thank you.

Bambam22 profile image
Bambam22

We are all sailing in the same storm, I will lend you my raft anytime you need it 😘.. I read inspirational stories and listened to all Dr Balcavage and Annabelle Bateman podcastes. They refer to Hashimottos being put in remission and some even use the words curing. However I have come to realise it is acceptance and management. My antibodies were just short of 1000 for TPO and Thyroglobulin 250. Changing diet removing processed food and gluten, supplementing B12 , B's D. Being kind to my liver. Yoga and mindful meditations appear to help my body reduce my antibodies from 1000 to 125 and 250 to below range. On reflection my diet and lifestyle had been pretty dire.

I even went as far as having a poo test last October to understand my gut biome as I felt so blind to what had gone wrong with my body. I did learn that this is a young science and didn't give me the anwsers I needed but that said I did learn a lot after it put me on a LOWFOD diet for 8 weeks and it recommended I supplemented with S.boulardii and oragano oil tablets to comat bad bacteria. Things change for the better but why wouldn't they it was a supportive change 😁

I have found out I can't tolerate wine of any sorts, onions cause me problems and kiwis are amazing food for the digestive tract.

It is becoming a most excellent adventure.

I still have my off days and thought recently I had hit a slippery slope down hill but it wasn't so much a black ski run but more of a very short step across a green run🤣

My heart sits with you, you will get there 💙

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Bambam22

You can share my raft too! But it is going in lots of different directions currently, and sometimes not even sailing at all, as I'm so knackered, but soon you can! I feel I must accept I need the replacement hormones, and they aren't the enemy (and I'm aware I should be grateful on one level), but I strongly suspect I have something else going on, something inflammatory and gut'y - and my essential vitamin scores sort of prove it I feel. For years I've eaten healthily, no processed, lots of dark green veg, v low refined carbs, organic where I can, avoid chemical make up and household products, 10 years of yoga...Where did all that goodness go? Anyway, if you have time I would love to know what supplements you use as I'm about to purchase and try and get those levels up (although I am also wondering if that expensive exercise is pointless if problem in the gut means I won't absorb it) - and, did you start taking replacement hormones before you did all this optimisation, or at the same time, and does it matter? I'm keen to optimise everything to give myself the best chance but at the same time, I FEEL LIKE CRAP and I want to speed all this up if I can. Thanks again for your time (and raft) and recommendations (Dr Balcavage and Annabelle Bateman, I am coming your way...)

helvella profile image
helvellaAdministratorThyroid UK

You might find my Vade Mecum of interest. It contains lots of information - such as a list of most of the abbreviations and acronyms you will see here on the forum. As well as much else.

helvella - Vade Mecum for Thyroid

helvella.blogspot.com/p/hel...

Down the right side, there is a kist of many other documents which might be of interest. For example my medicines document which lists the various makes available.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to helvella

Oh thank you! I will read it all, many thanks.

helvella profile image
helvellaAdministratorThyroid UK in reply to ThyroidOdyssey

Not every word! That would drive anyone mad. As and when needed. :-)

ThyroidOdyssey profile image
ThyroidOdyssey in reply to helvella

haha, good to know thank you. One must conserve research energy.

Bambam22 profile image
Bambam22

😁 raft anchored for you.I was taking levothyroxine without any other direction from the NHS for about 14 weeks. Joining here july 2022 opened me to supplements. I took the ones recommended and these have worked well for me. Sublingual B12- Nature Provides and Oral spray D3000 +K2 Better You, both from Amazon.. gut absorption bypassed 😁

I also take Thorns basic B complex capsule as recommended her and these have had a great impact on my folate levels.

I have also taken collagen and glutamine recommended to support healing the gut. I blend these in a daily smoothie with kiwi, green banana, spinach, fresh ginger and maple syrup. Taste better than it sounds. I would sometimes throw in tumeric and pepper.

Now for ferritin, I had a full iron panel take and doctor said 'your ok you are in range, no treatment required.' I was rock bottom of the scale. I incorporated liver into my diet and increased vitamin C.. my levels are on the up. Love liver now 🤢

I found golden milk (hypothyroid chef recipe) daily in the beginning helped with calming and reducing inflammation. Cilantro chicken (hypothyroid chef) became my stable for the same reason. I loved it but interstingly enough as I have improved I don't hold the same love anymore but it is still amazing.

A turning point for a reduction in my crapness was getting vit d and B12 over 100

Keep in touch I would love to see how you get on, you are certainly not alone 😘

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Bambam22

thank you so much for all of this info / inspo. I am getting going on the probiotics and recipes, and sourcing supplements for the essential vits today before ordering all the tests I'm missing. Have a chat with a functional medicine practitioner who is v well versed in inflammation things tomorrow. I think my D and B12 are super low, it's great know that sorting this out helped you feel so much better. I was already on collagen, going to add glutamine and a tonne more healing green juices. Oh and I did a cold shower today, not for long (jeez!) but it's a start! I will keep in touch, thank you for your support and right back at you.

Tlflom profile image
Tlflom

Here is my 2 cents worth. I have to say the out come of a doc putting me on armorthyroid was outstanding. My energy level went through the roof. I had no idea how bad my energy level was. I just thought it was old age. Some docs said people get along better with synthroid. I tried it and no longer had energy. In fact I became very lethargic. Switched to a better doc who returned me to armorthyroid and my former energy.

ThyroidOdyssey profile image
ThyroidOdyssey in reply to Tlflom

thank you so much, I have never heard of this alternative and will read up in case the need arises. Like you, I have put my energy levels down to kids, the pandemic, looking after ailing parents, just life. But now I look back it's been crazy, having to fall asleep half way through working day, head to bed straight after making the kids dinner, exhausted upon waking. I hope I have the same experience as you and I'm so glad you've got your energy back. Thank you again for your help.

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