interesting about their article on hypothyroidism, which left me reeling. I have suffered for 15 years and been on levothyroxine for all this time. I have the same symptoms now as I did15 years ago, fatigue, cold all the time, memory fog, weight gain, anxiety, depression, dry skin, thinning hair, carpal tunnel, aches and pains. I have been back to the GP numerous times explaining that I still suffer from all these only to be told that its because I'm depressed and anxious and If I lose weight and get my stress levels down then I'll feel better! I didn't know about T3 or NDT. The woman on the programme said she bought hers online from abroad and has never felt better. I want to do the same, but don't know where to start with my search, I don't know what my blood test results are but can find out. Does anyone else do this? Where do you get them from?
Trust me I'm a doctor....: interesting about... - Thyroid UK
Trust me I'm a doctor....
Many, many of us do that, because so many doctors are completely ignorant and keep us sick.
If you want people to send you their trusted sources, you need to ask for a PM. Links are not allowed on the forum. 
Ridiculously even my NHS endocrinologist has suggested I get my T3 from abroad because my GP wont prescribe it.
Well, there's not much more he can do, is there. It's a terrible situation, but that's the way it is.
Isnt it annoying though when it is even featured on this programme.
I didn't see the programme, so I've no idea what was said. But, if the person making the programme doesn't have hypo himself, he would have no idea that you can't just walk into a doctor's in the UK, and ask for T3 - or even worse, NDT - because they would probably laugh in your face. Most people just cannot imagine that the medical industry would refuse you the one thing that would make you better. Welcome to our world!
You need to watch it. He did know the problem, just highlighted it but he was accepting of the fact it was difficult to get even though eventully we probably will get it prescribed....probs not im our lifetime though.
I can't watch it. I live in France.
Well its on iplayer if you can get that there.
Nope. The BBC does not like people who don't pay their licence fee, watching their programmes!
Greygoose, if you miss iPlayer, it's possible to set up your Internet connection to make it look like you're in the UK. I used to use this to watch American programmes. I used a website called Hulu, but I don't know if it still exists.
Hmmm... I'm not sure I'm capable of that. And, to be honest, I don't really feel inclined to try for just a few minutes of a programme, the text of which, I can read. Thank you for the suggestion, but I don't think I'll bother.
No problem GG, just wanted you to know it's an option if you ever need it! x
Thank you. x
It was very sympathetic. He did a good job of highlighting the problem.
greygoose, everything said in the programme is on the BBC news article
bbc.co.uk/news/health-38895877
and on the BBC2 Trust Me site
bbc.co.uk/programmes/articl...
Thank you, crabapple. Very helpful.
Many episodes, and parts of episodes, end up on YouTube. A quick look did not find the latest episode, but the one before is up there.
greygoose - we have all the UK TV we need here in Crete through the computer with VPN - an American company. Of course its not free.
It is the same in France, only Levothyroxine is allowed and it does not work for everyone and can cause your condition to be worse. I stopped it because it was causing my muscles and reflexes to be turned off and contributing to eye problems and brain swelling besides doing nothing for my Hashimotos. Since I stopped I have my brain back, my muscles and reflexes, and I am just back the the original things from the beginning. The choice was simple for me once I learned how bad it was for me. I refuse to take it I would rather die sooner than live longer with no brain.
That's not true. I live in France and you can get T3 prescribed. NDT is illegal, it's true, but it's not that difficult to get T3. You just have to keep trying different doctors until you find one that will prescribe. I think you ought to make the effort, because you are going to die a long, slow, miserable death if you don't go back onto some sort of thyroid hormone replacement. If your heart doesn't give out, first.
It could have been that you were under-medicated with levo, and that's why you felt bad. Nothing will work if you don't take enough.
Did you get all your nutrients tested? it won't work if they're not optimal. Are you on a gluten-free diet, as you have Hashi's? There are things you can do for yourself besides coming off your medication.
I was on 65mg they kept raising over the years to no effect. I had a very good gastro specialist check my nutrients on a cellular level and have been on the supplements for the last 3 years. Was on Levothyroxine for 7-8 years. No one wants to believe that some people cannot take synthetic drugs but it is true. So getting a synthetic T3 to go with Synthetic Levothyroxine T4 may not help. I have had a body temp of 35.5 and lower all these years and Levothyroxine did not help, it just made my situation worse.
65 mg? That's an awful lot of levo! On that, you were probably over-medicated on T4, but not converting it to T3. You just can't blame the levo as you haven't tried anything else.
By the way, you have to ask for T3. No-one will offer it to you. But, seems to me it's worth a try if you are a bad converter.
I do believe that synthetic doesn't suit some people, just as NDT doesn't suit some people. But, as things stand, you just don't have the proof of that. You were obviously very badly treated by ignorant doctors.
Hi Numberone1, My doctor too suggested I buy my T3 myself through the internet, because he said he didn't want to really prescribe it himself. He declared he was too scared of the GMC coming down on him for thinking outside the box and not following the NICE guidelines. 
Things really need to change in this country, it's appalling.
spidernose The best thing to do is obtain your test results with reference ranges. You will need TSH, FT4 and FT3. FT3 is most important when adding any form of T3, either to your Levo or changing over to NDT. You need to see where your FT3 lies within the range, sometimes conversion of T4 to T3 is good but we're just not given enough Levo and an increase is all that is needed.
If your GP hasn't tested FT3, and it's very unlikely that it's been done, then you can get a fingerprick blood test to do at home from Blue Horizon
bluehorizonmedicals.co.uk/P...
The Thyroid Plus Three tests all those mentioned above.
When you have your results, post them and members will be able to guide you.
Can I do a fingerprick home blood test to get my TSH, FT4 and FT3 levels? A locum GP once upped my Levo and my own GP went nuts and reduced it back down, he didn't even ask how I was feeling on the increased dose!
spidernose Yes, as I said in the above post
"The Thyroid Plus Three tests all those mentioned above."
Use the link to Blue Horizon I gave you and you will see the Plus Three in the tests listed, it's £49
cheers
sorry I didn't realise what the thyroid plus three test was
I'd like to give this more than one 'like', as it is the perfect advice very clearly stated!
Nutrient deficiencies are common in people who are hypothyroid. As well as getting all your thyroid results for the last 3 years or so, also ask for any results for vitamin B12, vitamin D, ferritin, iron and folate. You should expect to pay for paper and printing costs, no more.
If you want to pay and get a complete set of thyroid results and basic nutrients then the Thyroid Check Plus Eleven is a very popular test on this forum :
bluehorizonmedicals.co.uk/T...
bluehorizonmedicals.co.uk/W...
You don't need to involve a doctor, or get their permission, or even get them to take a blood sample. You only need to do a finger prick blood test, which you can do yourself with the supplied kit, and then send your sample back to the lab. Results are returned via email.
Once you have your results, either from your surgery and/or from Blue Horizon, create a new post and post your results and reference ranges, and ask for feedback.
Some more info about private testing :
thyroiduk.org.uk/tuk/testin...
thanks, I'll get the home kit and post the results
Drink plenty of water before hand and do not take the meds till after.If like me despite the instuctions you cannot fill the container with enough for an extra £35 you can go to a BMI hospital for a nurse to take blood.It may be your GP practice or NHS hospital will provide the service for a fee.
What's a BMI hospital? Can I go there in the first instance?
BMI is private healthcare (i.e. not NHS) bmihealthcare.co.uk
You can arrange to go there first via Blue Horizon or I think a Spire private hospital
Food sensitivities can also cause problems, and many people are unaware they have them:
thyroidpharmacist.com/artic...
Gluten seems to be the most problematic, so worth weaning off it for a few weeks to see if symptoms improve.
I would try a gluten free diet but wouldn't know where to start, its in that many things. is it easy to do yourself or would you say I need the guidance of a nutritionist?
Hi spidernose
It's pretty easy and you don't need a nutritionist to follow a gluten free diet. There's so much free info on the internet. Here's one to start you off:
bbcgoodfood.com/howto/guide...
Thanks for that link. I read about toaster bags, a product I'd never heard of before. I need to give them a try.
Hi humanbean, I didn't see that bit about toaster bags. Practical yes but personally I choose to stay away from anything made of non stick synthetic chemical material - it's just yet another enemy of endocrine gland function, so I read anyway.
No you don't need a nutritionist. Gluten is mostly in processed foods so cooking from scratch is the way to go if you have time. There are lots of gluten free foods available now but watch out for sugar and excessive additives. GF bread slices at M&S are good.
I have found the natural thyroid medication thyroid -s widely available on the internet shopping websites.
how much is it?
When it is available - it disappears frequently - it costs about £40 per 1000 pills.
While we are talking about gluten, I thought I'd highlight another issue. Gluten doesn't seem to be a problem for me but histamine intolerance is. Any foods that contain mycotoxins, including gluten free grains, cause a histamine response for me. My health journey the last couple of years has been complicated so I can't really explain how I got to this stage (anyone interested can read my old posts) but I discovered histamine intolerance (caused by chronic mould exposure) is the cause of a lot of my recent health issues.
I've been reading about sterols and sterolins being good for calming an overactive immune system, see number 6 on this list:
thyroidpharmacist.com/artic...
amazon.co.uk/Moducare-Immun...
This one doesn't have fillers:
You might find this interesting :-
Thank you for your email of 4 February to Jeremy Hunt about hypothyroidism treatment. I have been asked to reply.
I should explain that the Royal College of Physicians (RCP) and the British Thyroid Association (BTA) are independent of the Government. The Department of Health has no plans to ask the RCP to withdraw its clinical guidelines for the treatment of this medical condition. Nor does the Department have any plans to produce guidance on the diagnosis or treatment of hypothyroidism. ‘UK Guidelines for the use of Thyroid Function Tests’ are published jointly by the Association for Clinical Biochemistry and the BTA.
Doctors are encouraged not to rely too heavily on the results of blood tests but to use their clinical knowledge and an assessment of the symptoms experienced by individual patients in making a diagnosis for thyroid treatment. Doctors are free to use whatever guidance they feel is appropriate when making a diagnosis. This includes guidance published in other countries.
I should add that under their terms of service GPs are allowed to prescribe any product including any unlicensed product or product not licensed for a particular indication that they consider to be a medicine necessary for the treatment of their patients under the NHS. This is subject to two provisos which are:
- the product is not included in Schedules 1 or 2 of the ‘NHS General Medical Services Contracts (Prescription of Drugs etc) Regulations 2004’ otherwise known as the Selected List Scheme; and
- GPs are prepared to justify any challenges to their prescribing by their primary care trust.
It is the responsibility of health professionals to decide on the most appropriate treatment for their patients. If a person has any concerns over their treatment or the drugs they are prescribed they should raise these concerns with their GP or consultant.
I hope this reply is helpful in clarifying the Department’s position.
Yours sincerely
Peter Wozniak
Ministerial Correspondence and Public Enquiries
Department of Health
The Secretary of State for Health states doctors can use other thyroid hormones other than levothyroxine-only; they can prescribe unlicensed drugs; they can follow whatever guidelines they wish even if they are from another country.
Blimey this is amazing Lilian15. With this being said by the Dept of Health why were some well known doctors taken to court then for not relying on blood tests and prescribing other thyroid meds other than Levo? Surely we should all have a copy of this letter and show it to our doctors who seem to rely on diagnosing the blood test and claiming they can only offer Levo?
The doctors were not taken to court - but up before the GMC.
Although there is much similarity between GMC proceedings and the courts of law, they are distinct.
Hi Lilian15, another afterthought. Have you sent this letter to TUK? It could be a really helpful reference.
As it was not written to me personally I do not think it ethical to formally give it to TUK. There is nothing to stop TUK writing to the Minister of Health on the same lines and get the reply for themselves though.
Hi Lilian15, Where did the letter come from?
Sheila from TPA wrote to the Minister of Health concerning guidelines and prescribing other thyroid meds. The reply was to her and she passed it on to the members. I kept a copy should I need to show it to my GP at any time.
Hi Lilian15, would you be happy to send a copy to TUK? Perhaps with TPA's permission if needed? This just seems like an extremely frustrating situation where there's a lack of knowledge and communication within this subject area within the medics. This information from the Dept of Health could potentially help start changing things for the better for us patients and therefore sharing this information as wide spread as possible would be a good thing? I'm just thinking that if organisations like TUK etc have copies, then they have power too to get this information recognised and shared, maybe at a higher level than us even? They may provide a formal copy for patients to access and take to their doctor if their doctor is still living in the dark ages and being inflexible? It feels like this letter is a gold mine........
I believe there have been several occasions when TPA have requested co-operation from TUK but it was declined. TUK had their ligitimate reasons, but nevertheless the two organisations working for the same outcome did it their own particular way. I am not here to criticize anyone, I owe my life to both TUK and TPA. and I too would like to see every one of us well again. I do not know the position of TPA at the moment because Sheila is incapacitated. However, TUK can write to the DOH themselves and get a similar reply, in which case they will not be breaking any rules legal or moral by officially owning it and sharing with their members. Actually any member here can write to the DOH with the same questions, get a similar reply and let TUK have it.
Hummmmm - Interesting! I didn't watch this particular episode of the programme which I love watching. I will try to seek out more details.
You should be able to i-player it. Also if you wish to read about it the content is on the BBC website in two places - see my earlier reply to greygoose for links.
Thank you so very much indeed. I did click on the links and have read the whole write up. Thanks again x
is that the £99 test? I think its called plus 11?
The Thyroid Check Plus 11 includes these tests :
TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies, Ferritin, Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25-OH)
For a full list of the bundled thyroid tests, what they include, and whether they can be done with finger prick and sample from the arm, or sample from the arm only, see this page :
Hi Spidernose,
As others have suggested, your first step is to get blood test results. You could ask your GP for a printout of your most recent test results (altough as mentioned before they probably haven't tested your T3 as it is not done routinely). Or ask for a test, and request they test your T3 levels. Or, as suggested get a private test. then post your results on the forum along with how much Levo you are taking and people will be able to advise you if you maybe just need more Levo.
If Levo really isn't working then the next step might be to try T3.
You could ask your GP to refer you to an Endocrinologist, and they might be willing to suggest to your GP that they prescribe you T3 (the actual medication is called Liothyronine).
I felt no benefit with T4 (Levothyroxine), I asked to go to an Endocrinolgist, the first one I went to refused T3.
I asked on the forums for the name of a T3 friendly endocrinologist near where I lived and asked the Endocrinologist I was seeing to refer me to the new Endocrinologist.
Whilst waiting for my appointment I was at the absolute end of my tether and so I bought some T3 from abroad and, with advice from this forum, I dropped my T4 meds and added in T3. I felt the difference pretty quickly and when I saw the new Endo I told him I had done this and that it was helping and he agreed to write to my GP to suggest prescribing and my GP agreed to this.
I've been quite lucky, a lot of people just cannot get anyone to agree to prescribing T3 and so they go the buying it from overseas route. But you could maybe try the Endocrinologist route first/as well, and see what happens.
My advice is to read a lot about the condition and the treatments so that when you see Gp's/Endocrinologists, you can go in confident that you know what you're talking about, a lot of us on here often feel we know more than the Dr's. For instance my GP has never prescribed T3 and knows nothing about it. So going in armed with the facts helps convince them that you are aware of the risks, etc, and that this is something you have given serious thought to and are willing to try as you feel the Levo isn't helping.
There is also an issue with brands of Liothyronine, some don't work so well for some people but others find them fine, the one they prescribe in the UK is Mercury Pharma which didn't work for me ( I felt the difference for the Uni-Pharma that I had bought from Cyprus), so you may need to find the brand that's right for you and then stick to it, getting the GP to specify that brand on the prescription. I now get Perrigo which I find great.
However, if you would rather get it from abroad then it's not too expensive and the stuff I got was genuine and worked well. In some countries they sell it over the counter and it is not illegal to import it for your own use. But, you have to take into account that it could possibly to stopped/held up at customs as it is a medicine going through the post. If you get a recommendation from someone on here you should be getting genuine medication.
Another option is NDT, I don't know anything about this as I haven't tried it, I went down the T3 route as I knew I could possibly get that prescribed, whereas I'm not sure I have heard of anyone being prescribed NDT in this country.
I really hope you find a solution that works for you x
A few questions :-) Hypothyroidism and difficulties with doctors
A Success Story
What Is Wrong With ME
