new here.: hi to all. i live in australia, have... - Thyroid UK

Thyroid UK

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ā€¢49 Replies

hi to all.

i live in australia, have hypo and hyper thyroid, going by my first doc., being on eutrosic for 4-7 years now with nothing changed, exept 8kg more weight. (65y) now 85kg!

changed my doc to a GP who loves tinkering with hormones. he found out, after i paid privatly for the Rt3 test, that i have no convertion to t3. he prescribed Liothyronine (t3) to me, ajusting to strength up and down in the last 7 month or so, but nothing good changed.

hair is falling out, weights pileing up, very sleepy, more brain frog, still ZERO sexdrive!! zilch energy, headaches every day since i take the higher dosis of 20mcg of the t3 every day.

house is not cleaned propper for 3 month now. i try but like today....nothing happened. no gardening, no walking the dog no dusting ! im sooo over it!

i searched the net for thyroid help meds, and ordered

/Natural-Sources-Raw-Thyroid-180-Capsules/50581(taken out the source)

but now i read what all you lovely ladies have to say and wonder, that i should go and buy the tabs you tried and succeded in? there in one outfit in thailand, who are dirt cheap, but the lable did not explain what exactly is in there? (thyroid tab and thiroid-S) were did you buy the natural thyroid? bovine or pig?

ps

i loved reading up on a lot of the threads, but i'm hopeless overwelmed.

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49 Replies
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MrsJim profile image
MrsJim

Hey Hun,

I do hope someone posts a reply but others I've seen regarding Thailand all seem to get blocked. I think it's to do with asking for private pm's because of marketing rules on the forum.

Thought I'd let you know. I'm fairly new and waiting on my private bloods and expecting that I'll be buying from abroad rather than my health services helping me so will check back to see how you got on.

Good luck Hun and hang on in there.

ā€¢ in reply toMrsJim

thanks, i know about the marketing rules, thats while I hope someone will PM me. i also taken the internet site out who sold me the raw thyroid extraxt. dont know yet, that i will take it without the help of my GP.

humanbean profile image
humanbean

Whoever told you that your were hypothyroid and hyperthyroid was wrong. You can't be both at the same time.

There are some symptoms which crossover between hypo and hyper.

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

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

In some cases (many cases?) the apparent hyper symptoms in someone who is actually hypothyroid are caused by cortisol levels which are too high or too low.

waveylines profile image
waveylinesā€¢ in reply tohumanbean

those higher levels of cortisol occur as the bodies way of trying to compensate for the lack of thyroid hormone in the body.....once that is corrected often it corrects.

dizzy864 profile image
dizzy864ā€¢ in reply tohumanbean

Hi, I was told by a consultant here in the UK that I was hypo and hyper. I was told it is unusual but not unheard of to be both.

I've had similar problems to you for almost 2 years. Unfortunately, consultant said only that it happens sometimes - didn't know cause but lots of theories which he refused to discuss. Unfortunately, no known treatment either. I was just advised that it would be extremely dangerous for me to reduce meds whilst I have so many symptoms of hypo and hyper.

I think I am now a little better. I did have a change of lio brand 7 months ago, which I think has helped. But there have been lots of problems with obtaining it through the NHS. I can't afford to pay for it as it is American and very expensive. As my pharmacist could not obtain Perigo, I did take some turkish lio for three weeks that I bought privately. This is much weaker than the american lio and I gained a lots of weight and my symptoms returned as bad as ever. But I'm now back on Perigo and have lost 3 and a half pounds in the past week. It's really frustrating. My appetite has increased and my energy levels are well down.

I think perigo works for me because the Americans have tighter control on drugs than in Europe. Here meds have to be +/- 10% of stated strength whilst in the U.S. it's +/- 5%. Most thyroid sufferers are hyper sensitive to changes in meds so the tighter controls I believe really help.

Incidentally, the two consultants I saw both refused to test cortisol levels.

ā€¢ in reply todizzy864

yes dizzy,

i dont really think i get my life back, ever! but i just have to try. the synthetic t3 Liothyronine is made by the compound chemist and cost me au$76 for 100 capsules, i can not affort the meds when i start to be on the pension!

i did my cortisol privatly, you should have an outfit for that in the UK too? just google it.

my level was fine, maybe i do it again! x

shaws profile image
shawsAdministratorā€¢ in reply todizzy864

Have you had your thyroid antibodies checked. Just in case you have an Autoimmune Thyroid Disease called Hashimoto's. With this the antibodies attack your thyroid gland till you are hypothyroid and at times there's a rush of antibodies which may make you feel hyper.

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

ā€¢ in reply toshaws

Yes shaws, I have hashi/hypo. I take 50 mcg of the t4 and 20mcg of the compounted t3. I cut the capsule in half and take one in the morning and one in the afternoon. Cuting a capsule is redicilous, but until I see my doc again , there is not much else I can do. This is the 3th time of adjusting the dosis and 20mcg is giving me migrane like headaches.

I had anti's tested 2 y ago.

Anti thyroglobulin Ab. 50 U/ml (<60)

Anti Thyroid per oxidase Ab. 1200 U/ml (<60)

Is that the right test?

My next tests are a month from now

FBE,ESR, E/LFSs, TSH,T3 &T4

Xx

shaws profile image
shawsAdministratorā€¢ in reply to

Maybe there is something in the fillers in compounded T3 but if your consultant said you cannot convert T4, it could be the T4

which is giving you the symptoms rather than the T3.

Of course, it could be the fillers/binders in the T3 which could also affect you. I found T3 calmed everything in body and made me well when I dropped T4.

dizzy864 profile image
dizzy864ā€¢ in reply toshaws

Hi, No, I haven't. When I saw an endo in July, I did quite forcibly ask for this test and some other things to be tested as well. I got no where. He absolutely refused any testing. He did very reluctantly agree to "one or two" simple blood tests. He refused to discuss what they were for!

I have been unable to obtain any results. Hospital says they have sent them to my gp and faxed them through again. Gp say they have not received them. Neither will contact the other and I'm left in the middle. I do believe that if anything had shown up I would have been contacted.

I did consider having some tests done privately. But I read that NHS won't recognize any results even if they show up anything. Going private for treatment is not an option both from a cost point of view and the relationship between my local doctor's surgery and the local hospital. An endo out of my area is not feasible as it's too far away.

shaws profile image
shawsAdministratorā€¢ in reply todizzy864

We have to cut the cloth according to our means and the NHS should be able to make you well. It obviously isn't and I think it's because they are so stuck on the 'ranges' rather than the patient's clinical symptoms which they should be alleviating by a decent dose which suits the patient.

By LAW the doctor has to give us print-outs of our blood test results with the ranges.

waveylines profile image
waveylines

Hi there,

Im afriad I dont know anything about the thailand ndt so cant help you.

However if your doc said you arent able to convert t4 to t3 wouldn't you be better tostay on t3 only meds? The thailand meds will have t4 in them which if you cant convert will back stack in your system making yiu really ill.

What dose of T3 does your doc have you on? Is it only 20mcg? If so that is very low and it could just simply be that you are under medicated. Has your doc talked about slowly increasing the T3? The falling out of hair etc does occur when you are under medicated. Your t3 needs to be slowly increased so will take some time. In your shoes I would go back to your doc....

ā€¢ in reply towaveylines

thanks wavy,

i need the t4 and it is only now the third change with the lio, but the headaches i have lateley and the falling asleep before cooking dinner is just hard to stomach! my next bloodtest is in 2 month till then he wants me on this 20 mcg.

Heloise profile image
Heloiseā€¢ in reply to

You need good ferritin level (at least halfway of range) for conversion of T4 but if your cortisol is either too high or too low, that will also convert your free T4 into reverse T4. High levels of reverse will lead to symptoms.

ā€¢ in reply toHeloise

loise, thanks. i will make a note in my folder to ask my doc about the ferretin. my cortisol was fine around 3/4 y ago, might need a new check up on it.

Heloise profile image
Heloiseā€¢ in reply to

mojas, cortisol is so important maybe even moreso than thyroid. The blood test only measures total cortisol but the saliva test lets you know how the active cortisol is behaving throughout the day. I don't know if you have access to Genova or Blue Horizon but labs like these can do the saliva test. The adrenal gland can lower thyroid if it appears you don't have the energy reserves needed. They also use cholesterol to make steroids and sex hormones.

If you have time for a very informative video.

youtube.com/watch?v=T_Re4ja...

ā€¢ in reply toHeloise

thanks again loise for ur input.

i did the saliva test privatly a few years back and it was fine, as i said before, it will be on my todo list to redo soon i haven't found and seen that video on the net yet, ill watch it later. x

waveylines profile image
waveylinesā€¢ in reply toHeloise

Heloise -always love your input -full of wisdom and knowledge. Now dont go getting your head stuck as you go through the door will you!! Haha x

Heloise profile image
Heloiseā€¢ in reply towaveylines

Ha, I should actually know much more with all the reading I've done over 20 years but thank you.

You look so much like my sister-in-law who lives in Arkansas, I actually sent your profile picture to her. You are a much younger version! I couldn't believe she didn't agree. The eye of the beholder, I guess, and I thought it was a real compliment.

waveylines profile image
waveylinesā€¢ in reply toHeloise

Awww -think that means I'd better watch my head when next I approach a doorway too... šŸ˜Š

waveylines profile image
waveylinesā€¢ in reply to

So am I correct in reading your taking 50mcg levo and 20mcg Liothyroxine? Depending on whether you say T3 is 4xsto 5xs the strength of t4 this roughly gives you a dose equivalent of 130-150mcg. This is still low and maybe what is happening to you is that you are simply under treated. I know your doc said two months but it might be worth ringing and speaking to him/her to describe your symptoms including your hair falling out! Technically it should only be increased every 6-8 weeks to avoid overcooking you....lol....

How long have you been at this dose?

If you transfer across to a ndt you will have a much higher ratio of t4 to t3 to what you have currently which maybe too much for you.....I assume your doc tried the standard stuff before hitting the high t3 to t4 ratio first?

You have all my sympathy (though much good that does you!) tough old road this getting the thyroid meds right. I remember it all too clearly....lol My pathway opened up when I finally realised it was certain fillers stopping me absorbing the meds correctly. Since changing to a hypoellegenic ndt been fine -sadly took me a fair few years to figure it out. You have all these lovely people on here backing you so hopefully your process will be much faster. Big hugs xx

ā€¢ in reply towaveylines

man....waveyly, that is dam good advice! and if i dont get my notes about all the talk here right....I dont know how to go about telling my GP about it!

exspecial the "call ur GP" is marvellous advice! x

waveylines profile image
waveylinesā€¢ in reply to

So its a GP who has decided you dont convert not a specialist???? If thats the case its a whole different story.....sorry didnt realise. So this doc is just dabbling? I thought you were under a specialist hence suggesting you ring him/her.

Too true you do need to get your facts straight before speaking to the GP. Seems I need to get them straight too!!! Sorry.

ā€¢ in reply towaveylines

im sure my new GP is as good as a specialist, as he has a big interest in women hormones. x

waveylines profile image
waveylinesā€¢ in reply to

Thats great that you have such faith in him. Sounds like a GP prepared to work with you.....rare species indeed!

How does he know you are not converting? Does the t4 backstack and your t3 go down on levo? Can see why you would like to try a ndt. I use WP Thyroid -it has very few fillers in it -all natural and no cellulose Crystaline. Feel great on it and had to reduce my dose as my uptake was so much better then on other ndts.

ā€¢ in reply towaveylines

he had me do the rT3 privatly, as medicare is fuzzy about paying fo it.. it was very high.

where did u get ur wp thyroidfrom?

PM me pls.

x

Stephanie70 profile image
Stephanie70

Hello,welcome to a life's journey of finding out how your body works ā˜ŗit's all trail and error,maybe your body doesn't convert t3 but it doesnt mean your body doesnt need t4?! Maybe try armour thyroid or thyroid S,I wouldn't know how you order that in Australia but here in Belgium I get an prescription and get Erfa thyroid at a chemist,I used to take armour but the prices went up so I changed to Erfa and felt better on it! Have you had your sex hormones checked? I did and now take bio identical progesterone and my sex drive is back!! I do take loads of supplements too selenium,calcium ,zink,magnesium,cod liver oil,vitamin C,B 12 and iron injections! Good luck

ā€¢ in reply toStephanie70

thanks for replaying.

NDT med just went up in price over 100% and is way out of my league. my lio cost me 100 tabs au$76 and that is allready too much on a future goverment pension. that is why im looking for cheaper alternatives.

50mcg levo (eutrosic)

20mcg liothyronine (compound)

my vitamines:

natural Kefir home-brewed

1 glucosamin 1500 for my joints

4 garlic 3000

1 selenium 200mcg

1 magnesium chelate 500mg

1 CoQ10 150mg

4 D3 1000iu (im low on vit d)

ps

testosteron was on the high side, but i dont want to take hormon replacements.

Stephanie70 profile image
Stephanie70ā€¢ in reply to

Have your tried asking your pharmacy what thyroid hormones they stock? And which ones are cheapest?! Maybe they have an NDT like Erfa? I'm sure cytomel is the purest form of synthetic T3 with no fillers,might be the fillers making you feel unwell? It's all do hard sometimes but please don't give up! Maybe someone could help you on hashimotos 411? I'm on that site too and theres a few on there from Australia! Worth a try? Good luck

ā€¢ in reply toStephanie70

will look into it thanks.

Stephanie70 profile image
Stephanie70

What meds are you on? I know cytomel is a good T3?

ā€¢ in reply toStephanie70

50mcg eutrosic t4

20mcg liothyronine t3 , still on trail.

Summer64 profile image
Summer64

You could try adding in some B vitamins to help with your hair.

ā€¢ in reply toSummer64

im taking B12.... upps just realised i run out of it!!! will buy more. šŸ˜³

SewingBee profile image
SewingBee

Hidden

This all sounds very familiar. I had been a lot better since February after 8yrs of trying to get right but now it's all gone to pot again! I'm a strong believer in not eating things that prevent proper absorption of thyroxine so I take my tablets at night. I too have the most hideous day when I take them in the morning.

Last night was a no 'sleep night' and yet I could have fallen asleep at anytime during the previous day. My legs were killing me all night and I've no idea at the moment what is causing this sudden change. I know I've put myself under a lot of pressure lately and now I can't concentrate, read or do the housework.

It's not always best to take vitamins and supplements when there should be foods that are naturally good for us. Just be aware of what you take/eat and make sure it's not affecting something else.

Good luck x

ā€¢ in reply toSewingBee

thanks sewingbee

my emotions and feelings are just all over the place. im too are under a lot of pressure lately , just sooo depressed about going on the goverment pension soon, finishing work for good and no goal in life with all the thyroid problems.x

SewingBee profile image
SewingBeeā€¢ in reply to

Hidden

Our pensions in England has changed and I can't retire until I'm 66 or 67. It's been a constant battle to impress upon the authorities that I can no longer function well enough to work.

It's humiliating but as my daughter said, 'You won't start feeling better until you acknowledge your limitations.'

It's good that you won't have to prove that you have problems. Focus on your dog. I find it helpful to take a journey that ends at a coffee house so I can then rest before I take her home. It's not so easy to communicate when you have a foggy head so I often go alone and speak briefly to people I meet out.

I also write in my diary what I plan for the next day because I'll forget by tomorrow and fall into that lethargic mode. I don't always do it but it gives me things to look forward to. xx

ā€¢ in reply toSewingBee

hahaha, that is exactly what i do. except going out with the dog, there is no coffee shop nearby. and we dont walk anymore, it is just too hard to convince myself, that 30 min walking the dog is no big deal!!! even my diary is empty for the last 2 month! and the "what to do next" notes....what the heck, why writing them if i dont do any of it anyway!. since im on low t4 and the lio t3 im lost.

hopefully i can pick myself up again after reading up in here.

SewingBee profile image
SewingBeeā€¢ in reply to

Hidden

The walk I do is ten minutes out and ten back. I know the problems because at the moment I struggle to board the car and seek a better dog walk. The only thing I can suggest is for you to reduce the expectations until you pick up.

It's raining here and I'm burning up and exhausted so feet up for an hour. I look like nothing on Earth! lol x

How do you cope with getting in the shower? At times like this I have to lay down after to recuperate! I feel pathetic but I know the signs and hope it will get better soon. x

ā€¢ in reply toSewingBee

there again....

i could be your shadow!!

i have soooo much to do, (but nothing gets done) the rain or sunshine let me pause and...yeah , what? -nothing-

and, i love my hot shower, and very often, after the shower i need to lay down for a few minutes to calm the nausea in my stomach!

btw.

i bought a infrared sauna, because my joints are painful, the warmth calm the pain down a bit. but sitting in there for 20 min makes me wanting to climb the walls!

i hope i get myself and the dog out for a walk today, axel has a very bad hip problem and cant hop into the car, i have to lift the lump in and out (30kg) i try to avoid that! xx

Katepots profile image
Katepots

Have sent you a msg.

ā€¢ in reply toKatepots

will check now.

thanks eljii, im still reseaching this option. i bought one lot but not taking it until I know more about it.

jenrio profile image
jenrio

Hi i have used Thiroyd from Thailand for few months after few years on Raw Thyroid by Natural Sources. It work so well that my TSH is now too low. My Gp never told me that i am now so suppressed. I have to stop taking it temporarily and see how i do. I only decided to try it because i felt the Raw Thyroid is no longer working for me.

ā€¢ in reply tojenrio

thanks jen for the input. that is interesting to know.

i know it would be good for me, but my back, hip and knee joints are giving me greeve, i take anti inflamentry meds to keep me moving.

but i will look into it.

thanks. x

waltermelondria profile image
waltermelondria

you can get a prescription for thyroid extract if you push hard enough. We're in Brisbane and I get my sons from wickham house compounding pharmacy. Its not cheap $100 for 100 tabs but what price health. Make sure you use an alternative filler (not microcrystalline cellulose/ avicel) as this can bind to thyroid hormone and you'll still feel off. We use organic white rice powder and it seems to be fine.

ā€¢ in reply towaltermelondria

hi, great, I'm in durack and go to the corinda compound chemist.

i would not have the money for the unsupported medicine much longer, as I'm going into pension by the end of the year. that is why i look for alternatives.

the new GP im going too is Dr patel in westend. he is great and very willing to help, but not cheap.

my liothyronine is $76 for 100tabs. x

yes it is expensive, but i didnt know any better. for the refill i will get the overseas meds and hope that customs didnt confiscate them.

soon as im ready to. order from overseas i will ask for gideing to the right meds. x

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