Ignorance is bliss??

I have had hypothyroidism for over 20 years, I am on 175mcg of Levothyroxin. I was diagnosed along with Hyperprolactinemia after not having a period for over a year. I don't take any meds for the hyperprolactinemia now, but, have trusted I have been given the right medical care. I have only been on levothyroxine for the last 4 years, prior to this it was thyroxine, no idea if this was the brand or what. After a random chat with a colleague I received a link to 'Stop the thyroid madness' website and couldn't believe that I have been mis-informed for so long. I could tick off nearly every 'symptom' on the list, to be honest I think I have lived with symptoms for so long I don't know what 'normal' is anymore. I have read through some posts and think, that's me...I'm going to make an appt with my doctor armed with evidence from the website. I have been getting aches in my joints and some days, like today, I get severe pain in my legs/arms all, it seems, attributed to hypothyroidism. I can't remember the last time I was 'checked' to make sure my dose was right..I would be interested in knowing if anyone has had any luck with NDT prescriptions, either through their doctor or online themselves..because right now this seems to be my only choice!!! Can't believe I have been so daft and not checked this out sooner...

24 Replies

  • Ignorance is torture, not bliss! Under medication can be responsible for many symptoms which should resolve when you are on the correct dose of thyroxine. Joint pain, bone pain and muscle cramps are often associated with vitaminD deficiency.

    Once you're stable on thyroxine it's usual to have Thyroid Function Tests once or twice a year. If your dose changes then follow up TFT should be run. Please always request a print out of your results with lab ref ranges.

    You should also request blood tests for ferritin, vitD, B12 and folate. These are often deficient or low in range in hypothyroid patients and need to be quite high in range to optimise absorption of thyroxine and for general wellbeing.

  • I will also make sure I have this info too, thanks! My kids are still quite young & a lot of tiredness and a lot of the other symptoms I attributed to this. I used to be checked regularly at the hospital but it stopped for whatever reason. Funnily enough I mentioned I was going to my doc to my hubby and he said 'for your laziness, grumpiness and intolerance to hubbies' - well yes actually, that about sums it up!!

  • I've got one of those too siggyk. Some things he is good at, but not illness. Janet.

  • Give this to hubby and tell him to stop being an unsupportive prat or you'll trade him in thyroid.about.com/od/bookss...

  • Post your results and ranges when you get them. Normal means different things to many thyroid sufferers. Don't beat yourself up for being daft-we all do silly things from time to time. The really positive thing is that you are now doing something about it

  • Oh siggy, sorry you feel so let down. But you will find loads of help here. I haven't been on thyroxine, but have just started taking NDT, although currently without my doc's knowledge ;-)

  • Depending on how I get on, I may contact you about this Harry. Thanks everyone for the replies, I'm so grateful, I will post my results when I get them :)

  • Of course! The only way is up now! Good luck xx

  • N, you are not daft. You only have to see the numbers of peoiple on this site all trying to improve their health to realise that the health service is not what it used to be. I have just ordered 'Stop the Thyroid Madness' off Amazon. For longer thsn I care to remember I have been taking Eltroxin, then suddenly I have been shunted onto levothroxine and am getting all the symptoms other people are complaing about. However, after much research I am about to stop the latter medication and insist that my doctor prescribes NDT. Amazon have a site telling you all about it and it can be prescribed by your own G.P. I have also paid for and ordered Nutri Throid through the same site. It costs a small amount of money weekly but I believe it is worth it as it comes from a bovine source in New Zealand. Another subscriber to this site has recommended this and you just need to google Amazon and it gives you all the info on this medication. Thank God for this site with so many people helping each other. I sincerely hope this helps you and I will give some feedback once my doctor has agreed. I do not expect any argument from her because I am backing my request up with concrete evidence of list of people who are finding the same as me that the change of medication is having extreme adverse effects.

    Good Luck and Good Health

  • Hi Veronica

    I Only discovered about NDT a few mths ago when I came accross this site. I wish Id known sooner too as been on levo for over 25 yrs and have symptoms on scrript list. Have mentioned all these things to doc/endo but got the glazed oook! Sadly cant get NDT they turned me down via CCG. Havent got any further so still on Levo. Just wanted to try and see if it would make any difference to symptoms. Seems I will have no option but to self medicate which means private blood tests etc. My son 19 also had paroxidase positive result recently and low TSH month before but the doc just wants to check in 6 mths and not investigate further re possible family history. Paediatrician also no help and we have known him for 20 odd years. Ollie gets lots of aches and pains, possible chondromalacia

    Very interested in the Amazon site re NDT and will look into this. I will also mention about the named patient basis but dont think I will get very far as I tried this when I wanted single jab for son re MMR! I had to tell one doc what NDT stood for too!

    Regards Jane

  • Hi Jane, Sorry to hear that your doctor has not responded very well to your requests. I simply will not take no for an answer. I have downloaded a series of patients compllaints regarding the adverse effects of change of medicatin and will present my doctor with a copy of this as well as a copy of Nature Throid vis a vis synthetic Thyroid and if he refuses to consider an alternative then I will take my request to Parliament. I have already made a request that I address Parliament on another issue relsting to the non implementation of the Autism Act 2009 in our area, and it has been granted.

    I am lobbying for another Public Bill to be enacted for I have an adult son on the Spectrum and that is another story.

    I will keep you posted as to what transpires when I contact my G.P.

    Meanwhille I woukd advise that you go back to your G`.P and tell him that you are unhappy with the medication and, if necessary, refer him to this site.

  • The main Thyroid UK site tells you that desiccated thyroid can be prescribed by GPs using the so-called "named patient basis" for prescribing:


    However, various restrictions imposed by, for example, Clinical Commissioning Groups might prevent them actually doing so.


  • Hi Rod,

    I have had dealings with the CCG and they are not a law unto themselves and can be successfully challenged by way of Judicial Review.

  • Good to hear this is so… but obviously we shouldn't have to go to such lengths!

  • Hi siggyk

    Im like you. Only discovered about NDT a few mths ago when I came acceoss this site. I wish Id known sooner too as been on levo for over 25 yrs and have symptoms list. Have mentioned all these things to doc/endo but got the glazed oook! Sadly cnst get NDT they turned me down via CCG. Havent got any further so still on Levo. Just wanted to try and see if it would make any difference to symptoms. Seems I will have no option but to self medicate which means private blood tests etc. My son 19 also had paroxidase positive result recently and low TSH month before but the doc just wants to check in 6 mths and not investigate further re possible family history.

    I do hope you have more success and do adk for printouts of results to keep record.

    Regards Jane9

  • At least I will be armed with facts this time, fingers crossed!!! Im interested in hearing if you were successful in getting NDT prescribed Veronica....i will check out amazon too. My fear is I get a response like you did Jane. if my doctor isn't that fussed about checking my bloods yearly, what will be the outcome for NDT? Time will tell...

    Told my sister symptoms and my plan of action...her response was that I was getting on & it is probably the menopause *sigh* I don't suppose anyone without a thyroid issue truley knows what it's like, thank god for forums like this!

  • You know, that sort of comment about it being your age, and you should expect it, drives me potty! I walk in a group with people in their 80s who still climb mountains. Age is not an excuse for everything. You are quite right to seek to be as well as you possibly can be xx

    Edit: at least, I did walk with them :-(

  • As stated to Jane, I am in dispute with the CCG and that is why I am addressing Parliament as soon as the M.P. dealing with the matter arranges this for me. so the CCG hold no bouquets from me.

    As stated by me before, I am a semi retired teaching lawyer and I have trained hospital managers in the law, therefore, any attempt to circumvent the law will be met with a vigorous challenge from me.

  • Hi Veronica I would be really interested in the outcome. My MP pretends that he doesn't understand what I was asking for.... Sad story.

  • Hi Siggyk

    Several M.P.s in our area have really let us down but when I write my documentary they are for the high jump.

    I wrote a letter to my G.P regarding the switch of medication and took it into the surgery on Monday and this morning his P.A. said she wanted to see me on Friday. No doubt she will want to do all kinds of tests but I have already told her that this is not going to happen until I get reinstated on the medication I have been on for donkeys years or she prescribles NDT. I have also warned her that if there is any argument from the Clinical Care Commission that she should tell them that they have a legal duty of care to put patient care first. Fortunately I know the legal pathways and I am very tenacious wherever I see an injustice. I have taken cases to the High Court and I know whether it be doctors, lawyers or the Lord High Chancellor they are all fallible human beings and they cannot play ducks and drakes with our health.

    I am looking forwarding to seeing my G.P and will feed back. I am prepared for a knock back, but I do know that if your health suffers as a sresult of negligence then on a no win no fee basis you can sue for professional negligence, this is in spite of legal aid cutbacks.

    Good luck and good health

  • How did you get on with your GP?? I had an interesting chat with a consultant tonight...see below....I have replied to janechapple....

  • Hi, I went to the doctor and may as well spoke to my 4 year old daughter! I told her how I was feeling (took in a printed list) and half way through telling her my symptoms she said she thought I just needed more tablets, I presented my case to do other tests and some reasoning behind my symptoms. I ended up leaving the room feeling like I was some kind of crazy person who didn't know what they were talking about.

    I had to make another appt to get my blood taken, the only test they did was for TSH and T4. I got my results today:

    TSH <0.02 (0.35 - 4.5) and T4 26 (10-25)

    I and told I was probably on too high a dose, how can I have all the symptoms of hypo and need less meds?

    The only good thing is I got referred to an endo, so I'm holding out some hope they might test for other things...

  • Hi

    Just been to see different doc at my surgery and mentioned adding of T3 plus whst her thoughts were on NDT, Interesting response - budgetry constraints and her hands were tied biut she agreed about my comments regarding patients feeling unwell on thyroxine. When I mentioned essential tremour as a side effect her comment was had I tried alcohol. Whilst I do have the ocxasional glass and know it can help with ET dont it was a sensible comment!

    Am about to write to local MP regarding thes issues, for what worth. No private endos in Devon sadly and I know that even they do not necessarily agree with NDT.


  • Hi Jane, it's interesting all these different stories!! I was at the consultant tonight and he had briefed by my GP about me asking about NDT. He told me he definitely would not recommend it because it's animal product and cannot be guaranteed the levels in it etc etc. I was going through my symptoms and gave me a check over. My reflexes were good and he said this was a definite sign I was not hypo...oh well then that's it!!! Thanks doc!

    He said he couldn't see anything physically wrong with me, questioned me about depression and depression in my family (I cried while I was in there) he questioned me if I was actually in love with my hubby, had he am affair? Had I had an affair - this was my lack of libido...

    Turns out he thinks it just because I'm a woman who has kids and work and I'm just tired...

    Anyway the result is he is going to do all sorts of tests, cortisol/blood count/immune/ all thyroid tests and test my hormones and to see if I'm maybe coeliac - apparently folk are normally skinny, but, if you feast on pasta and fast foods (like I clearly do) you can put on weight.

    I'm also getting an ECG for my palpitations...

    He wasn't going to do vitamin d because it's an American thing to test for that, but, I insisted...

    Back next week, can't wait!!! Kelly

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