Feeling awful. Thyroid?: It's been a while since... - Thyroid UK

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Feeling awful. Thyroid?

69 Replies

It's been a while since I posted. I post back in August with my blood results. Tsh was 5.35. T4 was 11.8 I think. B12 212. Ferritin 15. So I have been on a liquid iron and supplementing b12 with 1200ug a day.

My gp said my tsh is fine not even classed as borderline (lab range was up to 5.5) he said it wouldn't even be classed as needing treatment until it hit 10. I'm due another blood test next month though. He did agree to re test.

In September I was sent for a diabetes blood test and I had a huge panic attack in the nurses room. Now I do have anxiety and agoraphobia that still lingers but in the last 2 months it's become worse. My agoraphobia and anxiety had improved alot but recently since the panic attack ive felt awful. My anxiety was a general anxiety with the odd panic but very rare I had an attack. Recently I've had them often and all day I panic about my health and every bodily sensation makes me scared. My agoraphobia obviously returned after the panic in the nurses room so now I love in fear of every feeling meaning I am ill and I will need to see a doctor and right now I am terrified of going back there. It's so frustrating.

Every day I just feel grim. Constant physical anxiety that's all day, random panic attacks which isn't like me. I feel very stressed. I also feel weak in my legs and like I am walking on a boat some days which triggers panic. I feel scared all the time. Urgh it is horrible.

Can anyone relate? My husband said to post to see if anyone can give me some comfort that my thyroid could be making me feel so horrible.

Maybe it's all anxiety but my anxiety feels much more intense in recent months. It's tough.

Julie

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69 Replies
Clutter profile image
Clutter

Jingyd35, Low thyroid will certainly exacerbate anxiety and can trigger panic attacks. TSH 5.35 is almost top of the range and is borderline. Most GPs will treat subclinical hypothyroidism ie TSH >5.5. If your GP insists on waiting until you are overtly hypothyroid with TSH >10 you need to find a new GP.

Arrange your next blood test early in the morning when TSH is highest, and fast (water only), as TSH drops post-prandially.

thyroiduk.org.uk/tuk/diagno...

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

__________________________________________________________________________________________

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.

in reply to Clutter

I've tried 2 Gps at our surgery and both have said the same. It's very annoying.

Thank you for the links.

Ju

Clutter profile image
Clutter in reply to

Jinggyd35, I recommend you try every GP at your practice and change practice if necessary. Good luck!

michellebelfast profile image
michellebelfast

Please consider that you might also be suffering from adrenal fatigue. This would be worth researching too. Best wishes - you are having a hard time of it!

in reply to michellebelfast

Yes I have researched that and it sounds alot like me.

Thank you.

Thank you so much.

I had my diabetes test and it was negative. My cholesterol was 5.8 when last tested and I was told it was fine.

Could my thyroid really be causing this horrible anxiety? It's like anxiety i have never had before. Also could it be why I'm struggling to cope with stresd and why I feel woozy and like I am walking on a boat? Urgh its been a very tough couple of months. I have had anxiety 3 years after a horrible event with my brother being violent and I became filled with anxiety and unable to go out but things greatly improved. The last 2 months it's suddenly become worse and it's constant wjth lots of physical anxiety. It's bizarre.

I have had low ferritin levels for 10 years. My lowest was 8. I can't take iRon tablets as they flare up my ibs. I take spatone. I also supplement my b12 wit 1200ug every day because my gp wouldn't. He said it was fine.

Thank you. I think I need to treat this myself but how?

Julie

Justiina profile image
Justiina

Combo of low thyroid function and low b12 can trigger the anxiety and it is NOT in your head.

My anxiety reduced a lot after supplementing B12. I still have untreated thyroid issued and weak legs causes me panic feeling too. I hate if I have to go to grocery store with weak legs :( so I know how it is!

Like other people said find a new doctor!

in reply to Justiina

Thank you.

It is awful. All day I feel weak and anxious. I panic alot too. I can't go out alone because of it.

I am sorry you're not being treated either, that's terrible. My gp has agreed to re test me in a month or so. I'm dreading going back after what happened last time.

Julie

Justiina profile image
Justiina in reply to

I avoided doctors for years because something similar happened. I was so scared but then I finally got fed up and booked appointment ,I did not panic. I had understood it is not in my head it is the illness. That helped a lot.

I gave myself a permission to collapse as it is the illness and nothing I can control. Nothing one has to be ashamed of.

I force myself to go even when feeling weak or panicking.

Just don't give up. Rest and relax while finding new doctor as that seems much better option than just being re-tested by the same gp. If you TSH next time is like 4.2 he will just consider you getting better.

Proper diet can make a huge difference too. Histamine intolerance is quite common when hypo. Histamine build up also causes panic attacks and anxiety.

To me reducing histamine helps with weak legs.

in reply to Justiina

Thank you.

I am terrified to go back. That is why I keep panicking over this woozy feeling. Every day lately I feel Ia m walking on a boat and I keep having panic attacks about it, terrified I will have to see my GP :-(

He said 5.35 was normal!! Madness. He wouldn't listen to me when I said I had looked it up and I knew that was a high tsh. Both GP's said the same and all doctors in this health trust will say the same :-(

What diet helped if you don't mind me asking?

Thank you for your help.

Julie

Justiina profile image
Justiina in reply to

Yes it is pure madness :(

My dies is really strict. Things I avoid :

Dairy, gluten, corn, rice, strawberries, anything fermented and pickled ,processed food, canned food, blueberries, cranberries, red currants, tomatoes, citrus fruit, chocolate, coffee, banana, dried fruits and soy products.

I eat oat, quinoa, millet, white potatoes, fresh meat and fish, apples, lingonberries, coconut cream, almonds, kiwi, vegetables.

Millet is considered bad for people suffering thyroid issues but I tolerate it good.

I also ordered bifidobacterium longum to help reduce histamine as I react bad to probiotic that contain lactobacillus casei.

Later on I will start to represent food back to my diet to see which causes me the histamine reaction.

It is now my fourth day with this limited diet and just went shopping and my legs were much better. No panic nor anxiety.

I also had so many other symptoms like hives ongoing terrible coughing and flu like symptoms.

My list of food is something that fits me. Not everyone react so bad to all food high in histamine. Then again I have been ill for 15 years.

I also supplement magnesium, complex B, selenium, iodine, l-glutamine, vitamin D, K2, A , E , K1 , zinc, chromium and so on . So my quick response to reducing histamine can be down to proper amount of nutrients and vitamins.

It is said it takes 3 to 4 weeks to feel the full benefit of the diet.

As in have had this long road I can easily say what foods are the triggers for me. I get aching all over my body , I get pleghmy nasty coughing with breathing issues and really wobbly legs with anxiety and dizziness.

It is trial and error and it requires some effort. We all are individuals and do not all react the same so there is no one solution :(

There are plenty of excellent articles online about histamine intolerance and/or proper diet for thyroid issues. One has to find the one that fits them the best.

Many of us have felt the same , been scared and terribly ill. You are not alone with those feelings.

I hope you will find a way to reduce your anxiety. Maybe friend or your husband could come with you to the doctor?

in reply to Justiina

So basically everything I eat now haha! I shall definitely look that up today though. I will give anything a try.

I have never got on with wheat. I have had 2 coeliac tests and both been negative. Lately it's got worse and I am in agony with wind if i eat wheat. It's horrible.

My husband has always accompanied me to my appointments these last few years since having anxiety but now even that isn't a comfort. I just am terrified of panicking and making a fool of myself there again :-(

Justiina profile image
Justiina in reply to

Well it was a huge shock to me to get so intolerant one by one to everything I loved to eat!

Nowadays I just eat what I can dont think about it so much anymore. I used to love cheese and chocolate, now I am crazy about apples and carrots, so delicious :D Now I pretty much hate anything too sweet and sugary. So it is not all bad changing habits :P

Going gluten free could calm down your GI tract and reduce anxiousness. It is not only upset stomach that gluten can cause it is also mental issues.

Oh I so know what you mean by being scared of making fool of yourself, that's how I used to think. Fear of losing the control is so limiting. I have let myself panic, it does not kill me and that how I can control it. I always remind myself that this is not me, this is my hormones being all over the place. Naturally finding that some food causes it to me has given me a huge boost of confidence. I am not crazy, my body is :D

in reply to Justiina

Thank you. I have always struggled with wheat so I think I am going to try cutting it all out. I do struggle though.

I am the same but my recent panic attacks are so bad i am just so afraid of feeling them. I have them at home now which is horrible. I used to just have them at appointments or shops. Now I feel my life is becoming so limited and it's getting me down. I feel quite low to be honest and afraid.

Julie

Justiina profile image
Justiina in reply to

No wonder you feel low and afraid :(

You are under a lot of stress and your hormones are all over the place.

I would ask around to find a proper doctor. I think that would help you so much to have a doctor who listens and understands your fears and how low you feel. I bet it would make you feel safe as the treatment takes some time to kick in and you might not feel better asap.

Would going private help you?

in reply to Justiina

Thank you. I can't afford to go private unfortunately. 3 children and christmas round the corner.

The thing is since my huge panic attack at the blood test 2 months ago to check my diabetes because again the GP wasn't listening, he just kept testing more things ignoring my TSH result. I am now terrified to go back and have a HUGE phobia of blood tests now as I am scared I will pass out and feel terrible like I felt that day. Urgh it was horrible. I never liked blood tests but I had them every year and coped ok. Now I feel worried sick that I can't face them and I really need them re checking soon.

Justiina profile image
Justiina in reply to

I had my first proper blood tests a year ago for years. It was 16 vials they took. I was sweating and feeling awful fearing I will pass out.

I told the nurse that right after she told how much blood they will take. She asked if I want to lay down and I said yes yes yes please.

The nurse was very professional and told me to tell if I cannot handle it.

I lied down and it helped so much even when she could not get enough blood from right hand and switched to left one I was calm and ok.

Have you told about your fears to them?

in reply to Justiina

Yes she knows now lol. She's said if I come back again she will help me but im terrified.

Wow 16!!!

Justiina profile image
Justiina in reply to

Yup, that was a lot of blood :D but the doctor wanted to run all possible tests at once as she was worried about my wacky heart.

Its good that the nurse knows how anxious you are and in the end it is also part of their job to help us who are nervous and scared.

I have been housebound twice, first time a year and second time two years and that is not worth it. I was too afraid to do anything. And here I am now slowly getting my life back. During worst times I could not even have imagined to go to grocery store as I was too weak to even stand still.

I could be so anxious and panicking that even taking a shower was almost impossible task. Or meeting people on the yard when picking up mail could make me feel like throwing up because I did not want anyone to stop and talk to me.

I am not afraid of people, I am really social and outgoing and easily can talk with strangers almost anywhere yet I was so weak and anxious it made me so scared.

If me and my ex invited people to come over it had to be good day as I was not feeling safe and secure at home.

Now I see it was not mental health issues in the first place, yes I have had rough life too, but reacting like that was a bit too much. Mental health issues was a side-effect. That I now understand. Unfortunately this is a long road to get my life back and sometimes in the morning I might think oh I cannot do something I probably will get a panic attack. So it has left marks, but I am confident I will get over it too eventually. And hopefully for good when I get my thyroid issues fixed :)

Never give up!

in reply to Justiina

Oh my goodness I could have written all of that!! That sounds exactly like me. I can't believe it.

Is it ok to PM you to chat further? If you'd rather not that 's ok.

Julie

Justiina profile image
Justiina in reply to

Of course you can pm me :)

in reply to Justiina

Thank you. I will tonight x

Deli profile image
Deli

Hi - I have had similar experiences with anxiety in the past, which was related to thyroid function. This is something you will need the help of a doctor to get diagnosed. Keep trying!

I just wanted to post some ideas regarding the panic symptoms. Mine were helped by taking liquid vitamin b. And also having natural calming tablets like Quiet Life tablets.

These feelings are horrid but you can find relief in natural remedies.

I hope you feel better soon xx

in reply to Deli

Thank you.

I have spoken to 2 GP's and neither will help, they just said they will retest in 3-6 months.

I am on medication for anxiety but it does nothing, I have been on it 2 years. I had learnt to manage my anxiety myself. Now it's really physical and frightening I am not managing it at all. I spoke to my GP 2 weeks ago and he just said all he can do is increase the medication!

I shall try to liquid vitamin b, thank you. I take vitamin b in my Biocare Multivitamin but they are only 25mg amounts.

Julie

Binkie profile image
Binkie

hi Julie

I had lots of hypo symptoms and my tsh was 4.9 my dr started me on low level levo after seeing the change in me on nutri thyroid. I had awful depression, anxiety and panic once on nutri and levo these went. My dose is bit in air at moment and my anxiety and depression back with a vengeance, so I can say for me thyroid/anxiety deff linked x

in reply to Binkie

Thank you Binkie,

I am thinking it must be related because yes I have had anxiety the last few years but nothing like this. This is more physical and it is frightening me. I use to have more anxious thoughts before and agoraphobia but now every sensation in my body terrifes me and I am having lots of physical feelings.

Julie

eeng profile image
eeng

Your balance issues 'like walking on a boat' certainly can be attributed to thyroid problems. It's one of the first ones I get when when I am undermedicated.

in reply to eeng

It's really scaring me. I am told it's my anxiety because I am under so much stress as my poor son is struggling with panic attacks since being bullied. Last week he had a terrible week and told us he felt low and hated his life. That's when my balance issue began. I just feel like the back of my head is heavy and my legs week, when I walk I feel the ground is moving, just like on a boat. I am not dizzy as such.

greygoose profile image
greygoose in reply to

Your low B12 will also cause balance problems. With such a low B12, I Don't think you're taking enough. I think 5000 daily sublingual methylcobalamin would be better for you. It's not going to improve if you Don't take enough.

in reply to greygoose

Thank you.

So 1200ug won't help at all, that's a bummer. I've been taking Better You spray for a few months now and it's lovely lol! Nice taste. It'd thr b12 you mentioned but only 1200.

greygoose profile image
greygoose in reply to

Yes, well, that's not enough. But if you like the spray, why not just use more of it. I Don't say it won't help at all, it just won't bring your levels up very much.

in reply to greygoose

I wasn't sure if I could but yes I will start increasing it now fo sure. Thanks.

greygoose profile image
greygoose in reply to

Well, I Don't know if you can. I was just making a suggestion. I Don't use it. What does it say on the tin?

in reply to greygoose

It says 4 sprays a day is 1200ug but I guess you can take more if you are allowed a higher amount.

Thanks

greygoose profile image
greygoose in reply to

There's no 'allowed' about it. lol You cannot over-dose on B12. But four sprays is already a lot of spraying! Perhaps you could take some sublingual as well.

Hi there jingyd35,

Right now I could scream at your GP.......

I came to this forum with a TSH of 4.08 ( from memory) and was not feeling well.

...and a raised cholesterol which was the only thing my GP ever commented on.

Spent 10yrs on a starter dose,50 mcgs Levo.....GP insisting there was nothing wrong with my thyroid.

.....Passing out at events I couldn't handle though meant to be enjoying .....meals out,visits to art exhibitions etc......and yes it raised anxiety and panic ,eventually not wanting to accept invites.I had bilious attacks which my GP said were a good clear out,nothing more!!

Eventually persuaded GP to raise my Levo........but.......

My health never improved until I was referred to an Endo who immediately sent me for an FT3 blood test and as a result recommended a trial of T3,which was thankfully prescribed by my GP,though commenting on the price first.

Also my B12 and Vit D were low so started on both.

Endo stated that raised cholesterol is common in Hypothyroid patients!

Over the last 2 years my health and confidence has gradually returned ......still a way to go but it's good to feel that I can participate in and enjoy some of the things I love doing once again,though age takes over and I can't regain those lost years.

Muscles still to be improved a bit more,to enjoy walks again.

I'm sorry this has been about ME but felt the need to let you see what happened to me because of someone's ignorance.

You need help and there are a lot of people here talking good sense in my eyes,so please don't put up with a bad situation any longer and search out the people who can help you regain your health.

I wish you well.

in reply to

Thank you. I cried reading your reply.

My anxiety is so bad I just can't face appointments. My husband has said we can get the GP to do a housecall to ease the anxiety. I will even find that tough, I seem to just have panic attacks doing anything social now since the attack in the nurses room but I have had anxiety and agoraphobia on and off the last few years, it's been horrible. Now it's the worst and the physical feelings terrify me.

I started with the boat moving feeling last week and ever since I have felt terrified of it and scared something awful is wrong with me. I have a huge fear of fainting too so that's not helping.

I am struggling and have no idea where to turn. I just hide away at home all day other than doing the school run. I can go out with hubby and the kids but this boat moving feeling is even affecting that now. I spend most of my days crying because I am sure something physical is causing all of this anxiety because it is not something I am used to. I am on meds for anxiety but they do nothing, I want to wean off. I rang my GP 2 weeks ago and he said it's all stress as my son hasn't been too good since being bullied and all he suggested was increasing the meds. URgh,

Thank you for replying to me. I am glad to hear things are better for you.

Julie

Binkie profile image
Binkie in reply to

my anxiety use to be so bad that when I had panic attack I would fall over as lost feeling in my legs, arms and face, I couldn't stand, walk or talk, I was too scared to go out, it is terrifying but mine did pass. it is only back now as I am under medicated. I took loads of antidepressants and valium but nothing helped, once my thyroid started getting better I binned them. There is no quick cure for this, you need thyroid advice/support and to create some calm, I do not know enough ref thyroid stuff to advise but I have been helped :)

Its shit when you feel like this but it does get better, I did xx

I had to self help/medicate until my dr caught on that it really was my thyroid!! I was still classed as normal/ok on TSH 4.9 and most my thyroid was removed 7 years ago!!

in reply to Binkie

Thank you.

Sounds like you have been through a very similar experience.

So you felt bad when your TSH was about 5? When did your GP finally listen?

Julie

Binkie profile image
Binkie in reply to

he didn't and the endo was worse! I started taking nutri thyroid and then NDT when my dr saw how much better I was getting he agreed to give me a hypothyroid diagnosis and prescribe levo, I had to do all the work myself tbh.

I had been very ill for few years but dr said my blood tests and I was fine!! the endo said anything under 5 must not be treated so I am now reliant on my dr being ok about it.

in reply to Binkie

It's mad how they won't help. When did they help, when your TSH was over 5?

Binkie profile image
Binkie in reply to

no my TSH didn't go over 5 but I had my thyroid removed and I caused a huge stink about feeling so ill for so long. You may have to go self help route if your dr will not listen. I don't understand how they will give out drugs for everything except the one you need, it is mad xx try and stay calm, find some level head space and make a decision 'do you think your dr will help you?'if not then you need to do some research and decide if you can help yourself xxx its not an easy decision xx

in reply to Binkie

Thanks you.

So sorry you ended up needing it removed.

How can I help myself? Is there any way I can?

Thanks for your help.

Julie

Binkie profile image
Binkie in reply to

I started with Nutri thyroid tablets to begin with, they helped my thyroid to start getting what it needed. They are supplements and can be brought easily in UK, my only concern is your anxiety sounds severe and it may be too much waking up your body and mind till you feel calmer.

Nutri switched my brain back on, my pain and anxiety started to melt away HOWEVER I felt wretched day 3+4 in the first week, really nervous and jittery.

After 4-5 weeks on nutri I changed onto NDT this made my T3 reading on October blood test too high so for now I am on levo thyroxine thro my GP to get it more level.

Fatigue, pain and weight gain were my biggest worries the anxiety I had learned to manage or blitz with valium over the years.

I am recovering now but it is slow slow slow but I will get there.

in reply to Binkie

yes my anxiety isn't good at the moment. I wish I knew how to get it at a more manageable level. Before I had with acceptance and CBT but can that work if it's a physical condition such as the thryoid or iron causing it? if that makes sense.

Binkie profile image
Binkie in reply to

acceptance is a good starting point, accept that everything will work out the same wether you worry or not, kicking against it makes it worse.

you can not control everything and learning to accept that is key xx

Julie,I really feel for you and yes...lots of stress started my symptoms,unfortunately for me at the start of the menopause years. ugh!!....I think this is why for me the thyroid was not considered,for such a long time.

However,you need to consider your body as a whole and don't let them treat you as though this is all mentally based.

Our Pituitary gland is in our head,our Thyroid in our neck,our adrenals just above the kidneys and our gonads in our abdomen...........all linked as a part of the endocrine system........someone correct me if I'm wrong!! Perhaps the little book available in chemists " Understanding Thyroid Problems" by Dr.Anthony Toft .....£ 4.95 might help

Inform your doctors. My Endo and his trainees all had a look at my copy.My Endo raised a laugh when thumbing through it and observed that the chapter on hyper....was bigger than for hypo...and I innocently said there's a chapter for pregnancy and thyroid too......Are you planning to get pregnant he asked? ......I'm 74 .....have a grandson just started at UNI and a granddaughter doing A levels.......I think I've done my bit!!!!!!!!

My eldest son once said to me ......mother,your head and body are connected.He has always been good at making me think about things......anything academic,but regarding family contact .........there suddenly comes a time when I feel the need to text,email,phone by mobile and landline just to say hello and check he's still on the planet!!...........that's life.........and he's lovely.

Julie,I'm sorry I made you cry and I can see why,because you are feeling so bad at the moment and I used to be the same.I hope I've also made you smile a bit and that you will soon find the help you need.There is light at the end of the tunnel.It needs a lot of working at and support which you will find here from everyone.....just don't put up with negativity and concentrate on every little thing that helps you move forward x

Marfit.

in reply to

Thank you so much, very helpful.

It just made me cry because I feel such relief knowing how i feel is what others here can understand. I have felt very alone recently and scared.

Very comforting. Thank you.

Julie

in reply to

You are not alone now Julie.......we're all your friends.x

in reply to

Aww thank you so much. I cried reading all your replies. I have been so afraid lately.

My anxiety started 3 years ago after stress from my toxic family. I had to cut them all out as my brother has a serious mental health condition and he was abusive. It led to me being afraid to go out and having chronic anxiety. Things improved a great deal with therapy and over time I felt much better. Then in spring this year i was hit with an overwhelming fatigue and since then I haven't felt at all well. I have crippling physical anxiety, panic attacks even at home. I feel horrible every day with anxiety. I have weak legs, feel I am walking on a boat most days. I have a fullness in my throat alot but not like it's anxiety related it's more a fullness feeling and i panic I can't breath but I can. It feels like a ball of wind is pushing up into my throat, hard to describe. I jsut generally feel horrible but the boat feeling and throat feeling often send me into panic. Urgh it's rough.

Julie

Shadowenwalker profile image
Shadowenwalker

Hello,

Panic attacks is how I found out I had thyriod disease. Hashimoties that is. I have lived with on and off panic attacks for 11 years. I have only had my thyriod reading normal once during that time. My liver does not like the synthriod nor Levo. I have found my limited diet due to stomach digestive issues, lack of energy and lack of outside time has robbed me of vitamin d. So I am supplementing with vitamins. It has helped a lot. Hang in there it can get better. I also keep valum on hand for emergency situations. I cut the pill up into quarters because I do not like how it makes me feel, even though it helps with the panic.

in reply to Shadowenwalker

Thank you.

I think I do need to supplement the vitamin d and I will start this week.

I wish my GP would listen. It has come to the point I feel so anxious I can't face going to the GP :-( that's why this floor moving feeling has scared me so much.

I went to the GP in the summer with chronic fatigue, I'd had it months so went to him and said I need help I feel so awful. He ran tests and said he thought it was my vitamin d and thyroid. He ran tests and said my thyoid was fine. I have supplemented my B12 myself and put myself on Biocare Multivitamin. The fatigue has lifted alot to be honest. The thing thats got worse is the anxiety and panic attacks. My anxiety is now so physical, where as before I had scary thoughts and agoraphobia now it's all physical anxiety sending me into panic. It's horrible.

Julie

Low iron in itself - ie your low ferritin - can cause anxiety and panic attacks and my guess is that is a large part of your problem. Focus on getting your ferritin up, I am not sure how much you are taking, and also begin to work out why your iron storage level is so low. Might you have an absorption problem, or heavy periods? Has celiac disease been tested for? Is your haemoglobin low too?

in reply to

Hi,

I have had low ferritin for 10 years. It was due to heavy periods but the last 3 years that's been resolved. The ferritin has gone up from 8 to 15. I cannot stomach iron tablets so my GP gives me spatone. I take it twice a day. He wrote to the hospital and the consultant didn't need to see me he just said it was due to the periods and absorption problems. My blood count has always been fine, pretty high at 14.8. Not ever been anaemic because of it.

I have been tested for coeliac twice and been negative.

Shadowenwalker profile image
Shadowenwalker in reply to

Low vitamins c and d can cause low iron as it takes vitamins for the body to properly utilize iron.

in reply to Shadowenwalker

Thank you. I'm taking vitamins. I hope they start to help.

in reply to

So the low ferritin is no longer due to heavy periods, there must have been two things playing in at least, so the second problem is likely to be an absorption problem, as the consultant suggests (without tracking it down, apparently!) celiac is out, has h pylori been excluded? serum gastrin tested, antibodies to intrinsic factor and or parietal cells? If all those are negative the likelihood remains that it is down to hypothyroidism's knock-on effects on the gut, and SIBO is a possibility, this is also linked to poor absorption.

Do you take biotin?

in reply to

I had helicobacter 6 years ago and it was treated. I've had no other tests? Other than coeliac blood test.

I think biotin is in my multivitamin?

in reply to

OK, has there been a recent test for h pylori? It could be back, the GP should be happy to test for that... quite cheap.

Biotin increases stomach acid, it is hydrochloric acid, it is not a vitamin. You can buy it as a separate supplement, mine is from Solgar, and I think it helps, so do many on this site, but there probably isn't any clear research to prove that.

In hypothyroidism, stomach acid decreases, and this leads to poor absorption. Everything also slows down - the movement of the gut also slows down - this amongst other factors may help produce overgrowth of bacteria in the small intestine. That also would contribute to poor absorption of iron and other nutrients, again, the level of research on this is quite limited.

In other words, you have a huge bad cycle going on. Without enough available iron, the thyroid doesn't function properly. And poor thyroid function leads in itself to malabsorption of iron and other key nutrients making everything worse.

Higher quantities of say, ferrous bisgylicinate, or Ferrochel, might help you break this cycle to some degree. It sounds to me as though maybe you have never taken iron in high enough quantities to help.

You also need the thyroid to be treated, clearly. For that you need your GP to agree, unless you are confident enough to attempt self-treating.

But the iron you can work on yourself.

I am not a doctor and I could be totally and utterly wrong, or I may be making total sense. Unfortunately, you will have to analyse the facts, and how you are feeling, and decide for yourself, and this will not be easy because the nature of the illness is that you are feeling extremely anxious and tired and low.

We are all here to help though.

in reply to

Thank you so much.

I have had it tested once since then and it was negative. That was a few years ago and I have no symptoms of it.

I was on iron tablets years ago and tolerated them well. They helped and my ferritin got up to 49. Then a GP (not my own) told me to come off and have a break. It went in my boots within months and I saw my GP and he wasnt happy I had stopped it. Since then I have struggled to stomach iron tablets when he tried to re start me on them. I get the worst stomach pains and upset stomach.

I have had anxiety for 3 years. My brother was ill with serious mental health issues and he attacked my husband then chased after me. I cut all family out and in time my anxiety decreased. I felt really well earlier this year then WHAM fatigue hit in the early summer and I went down hill after that. My anxiety returned worse than before and all because of the physical feelings i feel. The unsteady floor moving, the full throat I feel and panic I can't breath properly, woozy head, weak legs and constant general anxiety pumping round :-( I spoke to my GP a couple of months back and he just said it was all due to stress and low iron.

I am buying the feroglobin liquid iron later to try, I read it really helps people. It's only a small dose but surely better than taking Spatone.

Thank you for being so helpful. I feel better for posting. I was worried this was just my anxiety returning and getting worse, worried I was losing control of myself in my mind and I was terrified. Now I don't feel as alone or mad.

Julie

for example ncbi.nlm.nih.gov/pubmed/236...

My son has had panic attacks and extreme anxiety, this is not due to thyroid so far as I know in his case, but low iron.

If you are taking Spatone, it will not have enough in it to raise your levels.

This is curable, don't worry. It will take time though.

Don't be surprised if you develop Restless Legs Syndrome. Also due to low iron.

in reply to

Thank you for your help.

I cannot stomach the tablets that's my issue and i have tried them all. It triggers my IBS.

I am going to buy this today.... tesco.com/groceries/product...

Hope that it helps me more.

Binkie profile image
Binkie in reply to

my IBS has nearly gone since using thyroid support :)

Polaris profile image
Polaris

Your B12 levels were very low Jingy - what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', a book by Sally Pacholok and Dr J.J. Stuart.

It looks as though you are in at least two high risk groups for PA/B12 deficiency - thyroid disease and possible undiagnosed coeliac with allergies to dairy, etc. and maybe unable to absorb B12. The symptoms you have are neurological and are typical of B12 deficiency: fatigue, unsteady, weak legs, extreme anxiety and breathing difficulties, etc. and should be treated with injections according to the BNF in the BCSH guidelines to avoid permanent damage. Supplements have probably not been sufficient and would now skew various tests.

Here are links and an excellent film and more links you may not have seen:

b12deficiency.info/signs-an...

youtu.be/BvEizypoyO0

cmim.org/pdf2014/funcion.ph...

The above BMJ research document is supported by many research papers and has a useful summary if GP won't read the whole document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

PS Four in our family have autoimmune thyroid disease and two with B12 deficiency.

in reply to Polaris

Thank you. I shall have a read/listen about b12 deficiency.

I often recently get a funny feeling in my throat like it is full but not in an anxious way and it panics me, I often have a panic attack when it hits. It's like I can't breath properly but I can, it's just a feeling of fullness in my throat. That and the floor moving and weak legs seem to be my latest symptoms that send me into panic.

I questioned both GP's about B12 and both said 212 was normal and didn't require any treatment. I tried to argue this as I did a little research and both said I was wrong.

I am supplementing my b12 with 1200ug a day. Which I think is quite a good dose.

Julie

Polaris profile image
Polaris in reply to

The throat thing is another B12 def. symptom Jingy.

Don't leave things to get worse, as there is a short window of opportunity before symptoms are irreversible. That is why the best treatment is with injections according to the BNF in the BCSH guidelines

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

I take Jarrows 5000 mcg sublingually daily and I don't have neurological symptoms. My sister has severe B12 deficiency, She was vegetarian, allergic to dairy and misdiagnosed with ME for years (at one time in a wheelchair) and then dementia. She has monthly injections and also supplements with the Jarrows 5000. It takes more than you would think if you have been deficient for a while. Symptoms creep up slowly over years - hers started with loss smell, fatigue, weak legs and progressed to loss of memory, anxiety and psychiatric symptoms. We had to battle to get her treatment as few doctors have read the latest research and are only looking for anaemia, usually the last stage.

in reply to Polaris

That's awful, your poor sister. How is she doing now?

How low was her b12? How terrible they didn't treat her.

This throat symptom happens alot lately it suddenly feels full and like a ball is pushing up into it and I can't breath properly. It's really strange. It does pass but I get it often.

Thank you for your help.

Julie

Muffy profile image
Muffy

Make sure you have your retest as early as possible in the day, preferably 8 - 8.30a.m.

in reply to Muffy

I will. Thank you 😊

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