Self medicating with nature-throid??

I've been hypo for just over a year now. My bloods to start with were quite out tsh over 100 and t4 4.4 tpo antibodies over 1000. Since then I did my homework, sorted a vit d deficiency out and now take a maintenance dose aswell as the usual b12 etc etc. HOWEVER my brain function is quite comparable to that of a 90year olds with dementia, my face is puffy, I'm really forgetful (seriously I literally forget something I tell myself to remember 5 seconds before hand), I don't sleep in the day, and I do sleep well at night but sometimes I just zone out, sometimes I go into my own little world and shaking my head to come out doesn't work unless I shake like I'm mental, quite annoying when I'm driving! (Shhh don't tell the dvla!), I'm fat (fat before I was hypo, ate too many cakes during my first pregnancy) but now I cannot lose my baby weight at all, ugh I'm just an absolute mess. I've slowly increased from 50mcg to 125mcg over a year, gluten free does ball all to reduce the antibodies or the hips. I'm on my second endo fighting for combination treatment, just got the forbidden words in a letter ' Not recommended by the thyroid association'. Well the thyroid association can kiss my fat arse and I wish thyroid disease on them all!! Now I'm at the point where I want to self medicate and I've chosen nature throid, because Gina Nolan takes it and is like a size zero. Plus I'm thinking if I turn into a size zero, and go into my gp swishing my long hair and remembering my name and shit and tell him I took nature throid then he can prescribe it finally ( I know 100% nhs prescribe that brand, I work in a gp surgery and go to print myself a script everyday before sense steps in). Where do I get it from? How do I start? What do I need to monitor? Has anyone had good outcomes (no bad outcome stories please) yes the last endo was very thorough and tried to rule out every disease going when I kept telling her I'm dizzy all the time. My adrenal function is ok (for now!), I'm not diabetic, I don't have lupus, I don't have rheumatoid artheritis, I have no inflammation in my body, and every other possible thing she checked for she did. Couldn't just accept the fact that t4 only meds don't fecking work!

Many thanks for reading, hope I don't offend anyone with cutting straight to the point but I only insult myself.

20 Replies

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  • Good for you! MaryFx

  • Lol! Sam, typical thyroid treatment, tell you what you don't have instead of sorting out what you do have ie hypothyroid symptoms unresolved by the dose of Levothyroxine (T4) you are taking or that T4 monotherapy simply isn't working for you. If you post your recent thyroid blood results with lab ref ranges we'll advise if you are undermedicated or not but combination therapy can really help sort things out when your FT3 is low and brain fog is often the first improvement.

    It may be better to try synthetic T4+T3 combination first as pig thyroid is so similar to human thyroid that it's not always successful with high Hashi antibodies. Despite the damn BTA recommendations T4+T3 combi is prescribed on the NHS. In my case it was after self medicating led to a huge improvement in my health.

    Natural dessicated pig thyroid (NDT) isn't licensed for use in the UK so doctors don't have to prescribe it although they can prescribe it on a named patient basis.

    ps I think Gena Nolin may have had the assistance of personal trainers and nutritionists to get that size zero.

  • Hi thanks for the reply. I was actually going to buy some t3 from Mexico but for some reason starting combination treatment on my own frightens me. I wasn't aware that ndt can rev up hashimotos but makes sense. My own gp actually prompted the endo to start combination treatment because he admits that he knows nothing about thyroid, and alls he knows is levothyroxine but he will start combination treatment if they recommend it. Now I'm back to square 1 and fed up with feeling dizzy and fatigued practically everyday. I'm 27 and I cannot walk around town shopping anymore because it's too much for me. Then there's the anxiety attacks. I know people on levothyroxine and it just annoys me when they say they are doing well with puffy faces. Why do people just accept a basic drug and do no research. I don't understand it. I need guidance with combination treatment. What should I be monitoring while I do it?

  • Oh, Sam, I do so agree with you. I know people like that. They are obviously still hypo but they say oh, I'm fine, Levo is wonderful! So that's why my doctors tell me that everyone they've treated do wonderfully well on Levo alone. When it just isn't true. They aren't looking and either they're not listening or their patients aren't telling the truth!

    The first endo I saw was a disaster! She had no idea what she was doing. But a friend of mine goes to her - freind's mental health is rapidly declining! - and says oh, she's wonderful, she teaches in a big Parisian med school, you know! I do know and I think it's a catastrophy! How can she teach something she doesn't even know anything about?!? Another generation of clueless endos on the horizon! It beats me, it really does!

    OK, rant over. lol Good luck if you start self-treating. That was the best thing I ever did for my health. If I had just followed doctor's orders, I'd be dead by now!

    Hugs, Grey

  • How is a size zero physically possible? When I was a teenager. size 10 was a 22inch waist (I still have some retro clothing from back then with size labels), so size 8 would be 20, size 6, 18, size 4, 16, size 2, 14 and size 0, 12. Where would your guts go with a 12inch waist?

  • lol Wonderful! I've often thought the same thing! I think they may have changed the system since then.

  • American sizing. At the other extreme, the only people on earth that can cut flattering shorts for hippopotami. :o)

  • I was just joking. The smallest I've been is a size 12 but at 5'8 that is perfect for me. I'm never try to go further down in a dress size x

  • You have come to the point of no return. When the medical profession, despite you asking to at least try an alternative and have been refused.

    You want to see if you can get your life back and it is worth a shot. Why should we be kept unwell due to the 'guidelines' (what guidelines! - ones that cause more symptoms which doctors refuse to believe are due to either keeping you 'within range' and too low a dose and some cannot use their initiatives and fearful of appearing before the GMC. Never mind that we may end up with more serious diseases such as heart etc.

    Someone will send you a private message re Naturethroid. I wish you well.

  • They keep us sick then we end up with statins, Bp meds, inhalers, antihistamines (I've never known allergies like this since I started levo). I could cry sometimes. I battle everyone, even my own partner says I need to get on with it sometimes. Why should I walk around in a daze feeling dizzy and shattered most days?? They ruled everything else out with blood test, why not just treat my thyroid properly.

  • It is an uphill battle if levo doesn't improve your condition. Many people have no idea what it is to struggle along feeling unwell and the doctors are told, by the Experts who insist, that one pill (levo) per day brings us all back to be euthyroid. They entirely miss the fact that many of us don't feel well and, in fact, I was far worse on levo than before I was diagnosed.

    To make matters worse we have "Experts" being given awards for their research papers (not listened to video yet). For instance a Dr. AP Weetman presented on "Challenges of Therapy: Dissatisfaction With Thyroid Hormone and Somatization Disorder". The ATA presented Dr. Weetman with an award. Just because our TSH isn't in the 'loop' for diagnosing we are being told that, other than thyroid gland clinical symptoms we have the following:-

    webmd.com/mental-health/som...

  • Oh, Weetman should have his thyroid cut out with a rusty knife!

    When he first came out with his 'theories' I wrote to him and told him he was a w****r. He wrote back and said thank you for your opinion! lol

    God, he's a snide lump of sleezeball!!!

    I also pointed out some of the discrepensies in his 'opinion'. But, of course, what do I know! I'm just a stupid woman with a 'somatoform disorder'! Makes me mad.

  • Ha ha well done! Karma is a b**** and that man will hopefully end up with a dodgy thyroid himself one day! Stick him on the lowest dose of levo possible and see how he feels all bloated, fatigued, dizzy, forgetful and achy! If any doctor dare challenge them they get struck up! Big pharma is an evil corporation!

  • I totally agree!

  • Can someone send me a PM please regarding a legitimate seller of Naturethroid - the GP says can do no more but long term Hashimotos is destroying my quality of life, so I must do something. Thanks in advance.

  • Tracdy

    Put your question onto a new post as yours above may get lost.

  • There is information about Nature-Throid here: nature-throid.com/ (that should take you where you need to go).

    Hope this doesn't contravene the guidelines?

  • Lol! This cracked me up! You have had enough. I was on levo for 2 years and 5 months after having a TT in 2013. Had no real problems pre-TT. Post-TT I have seen a gynaecologist, endocrinologist, gastroenterologist, dermatologist and now seeing a doctor in respiratory medicine for insomnia which I have had since October 2013. All of these "ologists" deal with their part but still I was unwell. I started to self-medicate on WP Thyroid 9 weeks ago. The first two weeks were awful. I was terribly sick. I spent the first two weeks in bed, had blinding migraine headaches, vertigo, my eyes would not focus and heart palpitations. I felt dreadful but I was determined to persist. My body struggled to adjust to the reintroduction of T3. If I had seen a doctor during this time they would have switched me back to levo. I followed the Stop The Thyroid Protocol to the letter. Started at 1 grain and raised by 1/2 grain till I got to 3 grains which is where I am at today. Will be holding for 4 weeks in accordance with the protocol and will get my GP to test my numbers. After 4 weeks will start raising again as I do not feel like I am yet optimal. Will raise by 1/4 or 1/2 grain every 10-14 days until I am optimal.

    Insomnia is virtually gone. I am sleeping better than ever. I actually for the first time in 2 years and 5 months feel great. No headaches. No aches. No brain fog although my memory could do with some improvement. I am not 100% but the change has been remarkable. I am about 85%. I will never go back to levothyroxine ever again. Self-medicating had given me back my life! I had energy for the first time last weekend and did not have to spent the weekend in bed. I wake up automatically every morning at 6am and don't feel like I have not slept.

    If I had waited for all these "ologists" to heal me I would have waited a long time.

    Self-medicating is a scary prospect but for me it was worth it. I feel amazing! I will message you re Naturethroid.

    NDT is amazing! It was used for 110 years for a reason.

    Good luck on your journey.

  • Do you have hashi's? I was thinking about starting on half a grain then slowly increasing until I feel great and I'm thin again. Self medicating is the only way to go now, I'm 27 and feel 97. I'm not joking, my 66 year old mother in law with artheritis has more energy then me! It's just ridiculous! I had an energy burst today, got home from work and cleaned the car and took the kids for a walk. Now I'm curled up on the couch with a nervous feeling that won't fook off (adrenals making up for lack of t3) aching muscles and feeling like I could kill someone if they dare challenge me. Hate this disease. I hope one day they introduce body transplants! X

  • I don't have hashi as far as I'm aware. Had a multi nodular goitre for many years. My antibodies when tested came back negative. For me self-medicating is the way. My energy is not yet where I would like it to be hoping it will Improve when I reach my optimal dose. You will also need to look at ways to bring your antibodies under control.

    stopthethyroidmadness.com/h...

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