Need some serious advice once again! just feel like giving up now :( stupid thyroid!!! fed up guys I need a pep talk :(

If you guys have read my other posts you would all know how utterly (excuse my French) SHITE I have had it! not that the rest of you haven't obviously!

I am seeing my thyroid nurse guy (simon) this week hopefully too and gunna request print outs of as many blood tests and my files as I can to see if I can get any other advise from you guys. I have researched and researched and my brain is truly frazzled

But advice I need is.. I've had RAI treatment in September (2013) on 150 levothyroxine (fml I know I feel utterly shocking so blood test Monday and up a dose so I'll feel a little better till I feel shit again in a few weeks)

So if I don't have proper thyroid function as I don't technically have a thyroid, would purchasing thyroid support tablets like higher nature or thyroen be any help

To how utterly shocking I feel? or would they be a waste of money? Or anybody have any tips of how i can keep myself going aswell as slowly increasing the thyroxine to the levels I need...?

I hope this makes some sort of sense...

I just start typing and hope it makes sense haha! Any answers would be greatly appreciated xxxx

13 Replies

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  • Have just private message you.

  • because you originally had Graves Disease your body will be very seriously depleted in vitamins and minerals

    add on the onslaught of nasty RAI and your body has taken a beating and been thrown into hypothyroid with probably adrenal stress thrown in

    i would start by taking at least 1000mcg of vit c plus a really good multi vitamin

    i suspect your ferritin and folate are low and you will need iron

    Its possible that you will be better off on either T3 or better still NDT especially if as i suspect your ferritin is low

    the scenario of upping thyroxine and feeling better only to crash is a very familiar story for my husband who also had Graves and then thyroidectomy and spent 6 years on no meds at all

    He is only well on NDT but it took many many years of hell and persistance to get to that point bcos back then internet help like this site was not available

  • I started taking multivitamins with iron in hope it would help soak up a bit of the thyroxine better haha, it helped for a few weeks and I thought finally I was on track of feeling a little normal again all my energy was back and stuff, what is NDT? What could I say to simon to try that?

    The thing bothering me more than before now is my weight, after splitting with my ex and a lot of things going to shite my confidence is zero, anxiety and depression is getting over the top now and my weight is playing a big part in my anxiety now, I have ALWAYS been slim, I've never really eaten crap or had a bad diet but I thought I'm gunna really stick to healthy eating and excercise to help with my depression also, the depression has eased a hell of a lot with the exercise and the diet, apart from a few days where I still really just want to go to sleep and not wake up! my weight is just piling on, but it isn't fat, it's like swelling, I don't have rolls or anything is like someone has pumped me up haha! I'm regularly mistaken to be pregnant, people, old friends and stuff are rubbing my belly and to both our embarrassment I have to explain 'ERM no it's just <word removed> fat I can't shift' haha I'm not one to let things get me down but I don't think I can take anymore without having another mini nervous breakdown!

  • The weight is called Mucin, it's like a mucus that forms under the skin, it's hard and you can't pinch it properly, like at the top of the arms right? And it'll be water retention too. Simon won't be able to help you with NDT unless a miracle happens. In your shoes I'd buy the Stop the Thyroid Madness book, Dr Peatfield's book and join the Yahoo! Thyroidless group and they'll coach you. Too long to write now but you've lost your thyroid, this is the conductor of your endocrine orchestra. Also just because they've nuked your thyroid doesn't mean you don't still have Graves, you just have Graves and no thyroid. So it's the AUTOIMMUNE upset you need to get a grip on too, along with undoing the damage of years of Graves, low vits and minerals and the trauma of RAI. If you keep crashing that's a sign that your adrenals are not handling the dose despite needing more to keep yourself from getting hypO.

    The reason I know all this, is it happened to me. Iron, Adrenals and natural dessicated thyroid are what are fixing it for me.

    You need to be careful with diet and exercise as you will further down regulate your metabolism and blow up your adrenals. You need to go slowly, walking, a gentle swim, a nice walk. And you need to nourish your body - look up the paleo diet - you could eat a lower carb version of that but you need fat and proteins. Dieting will make you fatter. Sorry, I know this is hard to hear but please, the least of your troubles right now is your weight (and I'm 50lbs up too, it sucks but first things first...) losing your thyroid is very, very, very serious. It's a long haul. Better to get used to that idea rather than running around with your hair on fire trying to fix it. Again I know this, because I did exactly the same thing. i've been to hell and back and it scared me, but slow and steady wins the race, I promise.

    Being thyroidless is a nightmare - you need to get your ducks in a row as best you can in order to have a chance of a normal life. Unless you are very, very lucky, the NHS will do b*gger all to help you, you are going to have to do it. stopthethyroidmadness.com/d...

    Join thyroidless on yahoo! and read this: tpauk.com/main/?page_id=1599

    PM me if you want to chat. And no, thyroid support tablets will do nothing. You need a good regimen of vits and minerals, but we'll get to that. But the biggie will be NDT I'm pretty sure but you can't just switch, you need to get ready to switch first.

    Rebecca

    x

  • PS what you are describing (and I can see it jumping off the screen) is what us thyroidless people call the 'psuedo hypers' - these are fake hyper symptoms like agitation, anxiety, going too fast, worry, scatty, being a bit all over the place, but you've weirdly got hypO symptoms too, like weight gain and depression etc as well so it's like being hypO and hypER at the same time. I constantly complained to my doctor, 'it feels like too much and not enough all at the same time'. Hard to explain.

    It's usually caused by low iron, low adrenals or low vits and minerals (and synthetic shite but that's just my view, my body hated, hated, hated, hated levothyroxine, I felt like I was dying). This means the levo is in your blood but not getting in your body, your cells, hence the swelling.

    xxx

  • Yeah in the week I crash i have both symptoms :( but the first 3/4 weeks I go up a dose I literally feel I can take on the world, the swelling just goes! last time I lost 10lbs in 4 days it was like someone had stuck a pin in me and it was such a relief coz it gets so painful sometimes. I'm going to buy some books and look even further into it all! xxx

  • Thankyou I will join up now! I'll have a look into NDT, could you message me with help for vits and minerals! Xxx

  • also with the exercise I don't have the energy for the gym haha, I walk to and from work which is a good half hour there and back, and I go swimming for an hour 3 times a week and I want to work my way up to do more because I feel so happy when I leave the swimming baths, and been to a couple of dance fitness classes with my friend to get me out the house and have a laugh and I love it but it's bloody hard when my ribs and hips are swollen like a sausage that's about to explode out of it's skin haha!

    I have looked into the paleo diet, but I'm doing just clean eating, nothing processed other than the odd sausage sandwich after work which is a treat but I'm not exactly dieting it was just in hope it would all together make me feel better too xx

  • Hi there, bless you, that's too much exercise I'm afraid, you need to go really slow. Chlorine isn't great for you either so immersing yourself in it for three hours a week isn't great.

    Walking, yoga, a gentle paddle up and down once a week, half an hour of pilates, but not dance classes or thrashing up and down. Honestly, believe me, you'll thank me, you'll be using up your serum iron really fast as well and too much vigorous exercise will mess with your T4 to T3 conversion. Your body is very depleted, you need to go very gently....

    And the up and down weight sounds like water loss, which will be to do with your electrolytes. It's complicated. Losing the thyroid really affects our ability to balance them.

    A sauna and jaccuzzi would be good, provided you put the electrolytes back afterwards (coconut water, or salty water with lemon juice, unprocessed sea salt) - but very relaxing, gets rid of toxins.

    Bread and sausages isn't clean eating either, sorry :-) No grains, no bread, no gluten. You have autoimmune disease, gluten and wheat and sugar are of the devil. One gluten exposure can affect you for six weeks after ingestion, you can't afford to go there .... leaky gut, candida, antibodies getting stirred up, bad news.

    I can PM you but it's a heck of a lot of info to impart - maybe look up a few of my posts to other TT's and RAIs and we can chat but thyroidless will see you right, they follow a tweaked version of the STTM protocol.

    Basically if you buy those books (and maybe also Adrenal Fatigue by James Wilson) you'll get the gist but in short you need to take the bare minimum you need to keep you alive (too much will jab your adrenals), the best quality you can afford, it'd look something like this:

    - a good B complex, like a B100 - not holland and barratt but something like Solaray, Thorne or Lamberts

    - a good multi mineral to give you 99mg of potassium, zinc, copper, selenium and your trace minerals

    - half a teaspoon of unprocessed sea salt in 8oz water once a day, see how that helps your water retention, maybe go up to 2 x a day

    - a good fish oil or krill oil, the posh stuff like green pasture or nordic naturals

    - Vitamin C to bowel tolerance, a good one with bioflavinoids in it

    - magnesium to bowel tolerance - I like Alta mag chloride but Lamberts Mag Absorb is good, also regular epsom salt baths (you can buy it by the KG online) and mag spray like Better You.

    - CoQ10 - at least 100mg a day, 200 better

    - Methyl B12 lozenges, I'd start on 5,000mcg a day then drop to 1,000mcg - Jarrow, Solar or Blue Bonnet

    - Vitamin D - start on 5,000iu a day, drop to 1,000iu maintenance dose

    - A good probiotic like Symprove or Biokult and a good prebiotic like Bimuno, your gut, I can guarantee will be a mess right now

    - you might need Betaine HCL and digestive enzymes with each meal

    - cook with good quality fats like coconut oil and grass fed butter - the top of the hormone cascade is cholesterol - you need good fats!

    - I'd pretty much bet everything I own that you need iron, I use Blue Bonnet Chelated iron 27mg that I buy from Iherb. How much you need will depend on your levels. The STTM site has some great info about iron.

    Lots of fresh water, plenty of sleep at regular times, in a pitch black room, no googling on the Tablet in bed, turn off all lights, LEDs, don't have technology in your room as you sleep, lots of rest, lots of fresh veggies, low sugar fruits, herbal teas (be careful with herbs like liquorice and the like as we don't know what your adrenals are doing yet), easy on the coffee etc.

    It's a bit of a mind bender to begin with but you'll get there.

    Sorry to be so direct, not trying to sound like a headmistress, :-) I'm rushing here, as lots on today, drop me a line if you want to talk.

    Rebecca

    x

  • Tai Chi is low impact, steady exercise. If you have a Taoist Tai Chi class in your area their classes are two hours (split with tea and a biscuit!). And it's graceful and mentally challenging. I only mention Taoist Tai Chi specifically because most other classes I know about are only an hour. Which might be fine. And it's also inexpensive, which sometimes other classes aren't.

  • Hang in there but post your results and ranges when you get them as it will give a better indication of what's going on so easier for us to give advice

  • NDT = Natural Dessicated Thyroid like armour, ERFA,westhyroid,thyroid-s

    not the synthetic thyroxine rubbish

  • I started on 200mcg T4 post TT & RAI. Despite reducing over 18months to 100mcg I became progressively sicker until I was mostly bedridden. Self medicating with T3+T4 combination (now prescribed) and correcting my vitD and folate deficiency and low B12 have put me on the road to recovery. I continue to supplement 5,000iu vitD, 1000mcg B12, 1,000mcg vitC, 350mg magnesium, 15mg zinc, 100mg B1, 100mg B2 and 50mg B6.

    It is commonly said that thyroidless patients need T3 in addition to T4 although my sister who had RAI for Graves is doing well on 100mcg T4 plus 20,000iu vitD weekly.

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