ANYBODY GOT ANY IDEAS WHAT I SHOULD DO

I was diagnosed with Hashimotos aged 27 (38 years ago) so I got onto levothyroxine.  Didn't really do a lot for me, kept saying to doctors I think I need more, etc. etc.  you all know the score.  Several years down the line I started feeling really ill, mentioned things to doctor - again didn't get anywhere. Then whilst on holiday in Africa I got food poisoning, call out a doctor to get something for that but he looked me in the face and asked why I was so bloated.  Then he took my blood pressure it was 180/120 - very high.  I'm not sure but I have read it somewhere that this is a side effect of levothyroxine.  I spent years on medication for that alongside the levothyroxine.  By the time I reached my 50s I was aware that the levo just didn't work for me, but of course the TSH test said it did.  Then I discovered that there were doctors out there who were prepared to help and I got onto a mixture of T3 and T4 tablets.  I was a different person plus the high blood pressure disappeared.  Unfortunately I moved house, retired and got a new GP who said he had never heard of T3 tablets or Armour Thyroid and sent me to a useless endo.  She was incensed that I was buying T3 off the internet and thought I was crazy and wanted to put me back on levo. That was 18 months ago, I've not been near the GP since then but now have had a call saying he wanted to review my medication - I've an appointment for the 9 May.  Any body got any ideas how I can convince him that T4 treatment only is not for me.  Help!!   

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  • Is it worth it?   Its going to be an uphill struggle, at best you will be given a tiny dose of t3  and you will have to fight the pct to get them to pay.     The way that they work out if you need t3 or not, is to take you off it and then see how you go on......     I let the local endo do that to me, and when he saw the state i was in, he decided that i needed t3 even if he didnt believe in it.     ( he has managed to turn endocrinology into a theology subject rather than a science!).     Eventually he let me have t3 but reduced my t4 to virtual zero........      

    I gave up at that point and bought myself some Ndt.     After letting the medics 'treat' my hypothyroidism for over 20 years l figured i could do a better job.....  And i was correct.    :-)

    I recently spoke to a client of mine who has been hypothyroid since they  gave her rai some 16 years ago.....  She still visits my endo every 3 months and he is still tweaking her dose trying to get it right.....   I would laugh if it wasn't so pathetic. 

    Xx g

  • I agree with galathea. If you've been feeling unwell for 38 years and the doctors haven't cared and haven't helped why do you still stick with them? Nothing is going to change.

    Since you aren't scared of buying thyroid meds off the internet, you could buy levo as well?

    I was first told my thyroid was "borderline" in about 1990. I wasn't given any numbers so I don't know what borderline really meant. I was told it wasn't important.

    In 2013 I was still untreated and blood tests indicated I had "subclinical" hypothyroidism. My TSH was a smidgen under 6, and my Free T4 and Free T3 were right at the bottom of the range. I had to beg and plead for levo and was given a prescription for 25mcg.

    To cut a long story short I started self-medicating five months after that first prescription.

    I told my GP what I was doing, said I didn't want any more thyroid function tests from the surgery, and I would deal with my thyroid problems myself. When she asked why, I said I thought the NHS treatment of hypothyroidism was inadequate and sadistic. She looked startled, but made no further comment. The subject hasn't arisen between us in the three years since then.

    Being self-sufficient with my treatment has made me feel "empowered", if that doesn't sound too ridiculous a word to use. It also takes away a lot of the fear I suffered from - the fear of being left to rot for a lot more years and years with nobody believing how ill I felt.

  • I have actually been self medicating for 7 years but of course this new GP doesn't like it, says it will damage my heart which I think is the usual rubbish.  I like your comments that the NHS treatment is "inadequate and sadistic".  I have made a note of this and when I go in on the 9th I will remember this.  Thanks.

  • Oh, I thought you were only supplying your own T3. Sorry, got the wrong end of the stick there.

    Perhaps these links might give you some more ammunition :

    circ.ahajournals.org/conten...

    circ.ahajournals.org/conten...

  • hi Emoli

    I'm new to this site.im from health unlocked to help me stop smoking.

    I was told I had to take levothyroxin.I did for several months.I swear it makes me more tired and feeling worse.

    I stoped taking it and I feel a lot better.that was in Aug 15.my doctor has not noticed or been in touch.nothing.

    I did tell him it made me worse.he just said rubbish.great attitude.

    I asked if anything else available.defiantly not.

    so now I'm not on anything good or bad I'm not sure.

    I don't know 😞 what can we do.

    thanks

  • Hi Thinlizzy, if you are hypo, it really isn't a good idea to go without any thyroid hormone replacement. You leave yourself open to all sorts of other diseases developing. There are things you can do, but l suggest you start your own thread with your own question, giving as much detail as possible (blood test results, dosage, etc) and then people will be able to answer you directly. :)

  • no one sat down and told me anything.

    I was tired.fatigue so had blood test.just told I need levothyroxin.no idea what t3 is.

    my doctors are always full.i can never get a appointment and when I do its rushed and only one medical problem at one visit.

    I will one day see the doctor but we cant book in advance we just call at 8 in morning and odds on there full before you get through.The great NHS.

    I'm fine at minute.

    but thank you for reply.ive got my hands full trying to stop smoking

    3 months now

    thanks again.

  • Thinlizzy54, if you depend on your doctor to make you feel well from thyroid treatment, and you didn't get on with levothyroxine, you are on a hiding to nothing. The doctor almost certainly won't tell you about the alternatives available, and might not even know what they are him/herself, and he/she is only interested in your TSH which is a hormone produced by your pituitary not your thyroid.

    Lots of people brought up with the NHS don't know anything about alternatives available.

    1) You can get blood tests done privately (obviously at a cost) without doctors - either NHS or private - being involved at all. Quite a lot can be tested just with blood drops from pricking your finger. The blood has to be collected in small tubes and then sent to a lab for testing. The results get sent directly to you. It is also possible to get tests done with a sample taken from the elbow, but that might be a little bit more problematical.

    2) You can buy various different kinds of thyroid hormone treatments on the internet. You can buy levothyroxine (T4), liothyronine (T3), and natural dessicated thyroid (NDT) which is a combination treatment of T4 and T3 and tiny amounts of some other homrones. The active ingredients of NDT are mostly derived from pig thyroid. If you are a meat eater who eats chops and bacon, then taking tablets made out of pig thyroid shouldn't be too difficult.

    Obviously, it can be scary striking out on your own, and there is a lot to learn. It can also be expensive when you add in vitamins, minerals, adrenal supplements and other things like that. But if you don't do well on levothyroxine, and you want to feel well, then you may have no other option.

    If you want to know more, then create a new post for yourself, and ask the questions you want answers to.

    Sorry for hijacking your thread, E-Moli. :)

  • that's fine.

    I shall look more into thyroid treatment

    I will be reading more posts in next few days

    thanks again

  • Best ask your questions first. It can be like a maze out their starting from nothing.

    Lizzy, I can't help thinking that stopping smoking shouldn't be your priority right now. You need to get your thyroid sorted. And I'm pretty certain that once you've done that, stopping smoking will be much easier. But, at the moment, it will probably make you feel worse.

    And, before anybody shouts at me, I'm not encouraging smoking, just getting the priorities right. Been there, done that!

    My apologise also to E-Moli, for hi-jacking the thread. :) 

  • m not sure.im stressing wih stopping smoking.but now I have read a couple of posts.I've got to re-think.

    I have ringing in ear.but I was in a car crash an air bags blew.I noticed ears only then.

    ihave headaches.due to stopping smoking?

    I can feel slight lump in throat when I swallow ?

    I've suffered with depression for many years.im 54.

    not confident.not at all confrontational and don't push for anything eg docs.

    I'm sorry.im a lost cause.ha

    thanks again

  • No, of course you're not a lost cause! You mustn't think that.

    I've never heard of stopping smoking causing headaches. It could be low thyroid causing them.

    Tinnitus and depression are symptoms of low thyroid. But, then again, tinnitus can be caused by a lot of things.

    Feeling a lump in your thyroid could be your thyroid, it could be inflammed.

    I'm afraid I have to say that with doctors, you have to stand up for yourself or they will walk all over you - especially if you are hypo. You have to develope a certain firmness or you will never get anyway. A lot of doctors are terrible bullies. But, if they sense you know what you're talking about, they will often back down. :)  

  • Lizzy,  this site has a website where you will pick up more info.... thyroiduk.org.uk.   

    And well done for stopping smoking.    I stopped  over 6 years ago with help from this site... whyquit.com.  The best thing i did was download a free quitmeter.   It tells me how many i havent smoked, how long i have been stopped and how much money i havent spent.   So far I have not smoked 45,234 cigarettes and i havent spent £12,665.    The program is still running on my laptop. :-)    ( based on cigarettes being £5.60 a pack)

    G x

  • I will look and read on the thyroiduk.org.uk site you mentions.

    I have a clock thing with smoking

    it's 14 weeks.5days.£563 saved.1326 fags not smoked.

    thank you for reply.i will read more posts

  • just for info cigarettes are now£8 - £9 a pkt of 20.

    so you saved a lot more.😆

  • Thinlizzy, you should start your own post.  You've piggy backed onto E-moli's and all new posts on here, she'll be notified.  Seeing as E-moli hasn't been back, I can only assume she may well have given up.

  • If you are buying your own T3 on line, what is the point of going for a medication review? I don't get the logic, there. Just ignore it, stay home and put your feet up! You don't need all that hassle, it's bad for your blood pressure. :)

  • Have you any photos of you at that time when you were bloated with a dangerously high BP?

    If you really want to go for your review (and tbh, I'd be declining the review), I'd show them the photos and tell them that you were so badly managed that you at best you could have stroked out and at worst, died.  Then be quiet and don't fill the gaps.

    You could ask them some questions. 

    1.  Do you want to actually kill me?

    2.  What is it about *me* that makes you want to reduce the quality of my life? (again...)

    3. Patient led doctoring seems to be the pinnacle of excellence - so what makes you feel you can ignore my previous experiences on t3 (good) and t4 (bad)

    4.  If you haven't heard of NDT/T3 than either do the background reading or refer me to someone who knows their stuff.  Otherwise you're no more than a quack.

    Tbh, you don't have to go, you don't have to "take" it.  But if you do go, unless they agree to carry on with the medication that is making you well, walk out.

  • Some great points there.... I particularly like nos 2 and 3....   Will  commit them to memory and  use them when i need to...   

    Xx. g 

  • I just absolutely adore your comments.  I do have a photo of an extremely bloated me, I look old, fat and close to death.  I have actually already shown this to my GP but he didn't seem that impressed.  I also took the photo when he sent me to the endo.  She just said I needed more levo.  I think she said you can go up to about 500 mcg levo and I was only on 200.  Odd that the useless TSH test showed that I was on the right dosage though.  There was one GP a long time ago that I told the levo wasn't working, he told me to see the nurse for a blood test, so I left it 3 weeks during which I took no meds, had the blood test done which showed I was on the right dosage (blimey).  So I said the test was wrong so he said have another one.  left it 3 weeks again and took double the dosage I was meant to be taking.  Had the test the results came back again that I was on the right dosage.  When I told him that the test was no good, he called me a silly little girl.  There's none so blind as those who don't want to see, there's none so deaf as those who don't want to hear.  

    I've got the feeling that I am of course going to get nowhere and will be thrown out the surgery.  Good job - will keep you posted.

  • I think the thing that would have driven me to beating him around the head with a sledgehammer I had cunningly concealed in my handbag was the "silly little girl" comment.

    How dare he patronise and belittle you that way!

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