Thread: Thyroid?

Hi sadly all too well.

It took 4 years to diagnose me, as the ref range in leeds is wider than anywhere else in the UK, so I was fobbed of with ME and Fibromyalgia, which I do beleive exist but far too many with that diagnosis are in fact undermedicated or under diagnosed hypo as I was. Because TD isn't a sexy disease it is way down the media and NHS's priority list despite it affecting 1 in 4 people and beign teh 3rd most fatal illness in the western world

By the time I was treated i had dementia, as it affects brain function, was in severe pain and couldn't walk. I also put 3 stone on in 6 months and had a lot of hair loss and a dangerously high cholesterol level

I don't take thyroxine I take the natural thyroid meds that have been aorund for over a century. The T4 only synthetics don't work on me as I have a problem converting to teh active form T3 which si what makes your body and brain work. The natural brand has it in already so i don't have to wait to convert. It does this in teh liver so many hypos can't tolerate alcohol as the liver is too ill to process and needs ot be kept in shape to convert properly.

the thyroid is the body's regulator kind of like the carburretor in an engine, if it breaks down then the body becomes sluggish and all functions slow down from heart pulse and brain, to kidneys, liver, cell regrowth etc, it can take longer to recover form injuries. Hyper works the other way and speeds everythign up. Although not all hypers lose weight and vice versa.

The thyroid also works hand in hand wiht teh adrenals, which take up teh slack when teh thyroid isn't working properly so you may be more reactive to stress and find it wears you out. As the adrenals also make the sex hormones then this is why libido is lost and gynae problems occur. it is worth gettign an adrenal meno saliva test doen to check all your levels are ok and you don't need to supplement. If you are worse second half of your cycle chances are your hormones are low

TD can be caused by Autoimmune problems, meanign it is either been eaten away or growing excess, post partum, which can be mistaken for PND, due to lack of iodine in teh diet due to high fluoride in teh area, or jsut aging. if it's in your family it is AI and you are at risk of other AI disorders. this also means you may not be on a stable dose of medication and will need to keep tweaking it as the thyroid dies

So just taking thyroid meds won't get you back to full health if you have been ill for a while you may need to take a range of vitamins and minerals to get back on top.

for instance selenium for liver function, pregnenelone, dhea and adrenal support. You shoudl also get your B12, folic acid, ferritin, Vit D and magnesium levels checked, as these all drop in TD and can stop you getting well. they need to be 3/4 of the ref range. not jsut 'normal' which could be 1 point inside.

It is normal to start on a really small dose and then increase slowly so if your mum is now feelign rough then it may eb time for one. often the body si so grateful fro help when it gets meds it has a rest form putting the little it has left out so you can feel worse at teh start as well, as it is just relying on teh meds

btw I also developed dyslexic fingers so any spelling mistakes i can't always see them so sorry about that.

Feel free to ask me anything. i set up this organsiation www.thyroid-disease.org.uk once i was well enough to think. You'll find lots of info on there re diet and coping strategies and there is a forum to ask questions.

a couple fo years ago we did the burlesque fashionshow in leeds to raise awareness and show it can be a sexy illness, and are looking to do more events to do teh same, so if anyone is intrested then lmk

Dawn

also a couple of tips to get diagnosed if you are 'borderline'

always get your bloods tested as earlya s possible. the TSH is higher at 8am thna 4pm and this can make a difference between beign diagnosed or not. you'd be suprised how many of our members this ahs made a difference to

get copies of all your test reuslts, never accept 'normal' even after diagnosis check what the figure is. the amount of docs who jsut give you enough meds to get back into the ref range is appalling your TSH needs to be under 1 to eb fully optimised and you workign properly

if you are borderline chekc the ref range in your area and ask for a referal to somewhere that has a lower one. i couldn't get diagnosed in leeds but discovered teh upper end in huddersfield was 1.5 points lower and went there and was diagnosed.

Also many docs computers wont' allow tehm to give you an antibodies test, a true indicator of if you ahve it or not, so go privately and have one done. this helped me as that then got me the referal, as despite beign in range I had high levels of antibodies which proved I had it

I have read some complaints about Levo being a cheapy version of normal thyroxine that gives all these side effects, wonder if thats true!

no levothyroxine is the proper name given to synthetic T4 hypo meds, it's just shortened for convenience. levothyronine is T3

generics also have the same name. However many of our members on generics do otice a difference and can't always tolerate them so if you can go for a named brand, and not chop and change brands then do. as the fillers can be a problem etc.

Eltroxin is the best named brand to take in the UK but it has to be named on teh prescription or you will be given a generic if the pharmacy you use has that policy. most now will only buy in named brands on request to save money.

More folks are turning to using natural thyroid meds, made form pigs thyroid, as I do as they feel it is better, or adding synthetic T3 into their synthetic T4 to mimc that effect. it could be that you are confusing just with synthetic brands

Thanks hun. Where do you get the natural stuff? I have felt so rough these last two days, my heart has been freaking out. Am gonna go back to the docs this week and ask her about the other vitamins and adrenals and brands etc. They already found a vit D deficiency, its all adding up!

Hi
it's prescription only and many docs are wary about prescribing it because it predates teh national formulary so not in there, have a good read of the info on our forum and if you do want to try it go armed. We have a letter from the MHRA on our website to show they can prescribe

definitely get tested for all the vits and mins I said. again cos docs don't treat holistically be prepared for them to dismiss and say all results are normal you only need the thyroid meds, but interesting re your vit D deficiency. It's seeming more and more hypo folks are showing this and we are recommending they get tested. As vit D is a hormone it woudl make sense I'm planning on getting mine done very soon.

just do as much reading as you can, we have a recommended book list on the site (btw I'm not trying to push you joining us it's jsut several years of research and experience which may help you)

I'm just literally going though the process of finding out if I have a under-active Thyroid. I feel competently out of it most of the time, all I want to do is sleep, and if I do get up I can't bring myself to do anything, which is so annoying because I know thats not really me, everyone so far says its depression, but i don't know. Apparently my blood test readings are just off normal, but i've managed to get another test booked, i'm sure they will say its nothing, but if thats the case way do I feel so weird all the time, err so annoying xx

jsut remember that if you were in teh US a TSH reading of 2.5 and above would mean diagnosis. so if yours is higher than that don't leave it and think it can't be your thyroid, it's jsut our crap ref range and the fact that some docs won't diagnose until it hits 10 !!!!