Hi, I'm new to the forum so forgive me any mistakes. I've recently stopped taking Levothyroxine (300 mcg!) as I wasn't getting any benefit and felt terrible (as I have for years, and have been also treated for fibromyalgia... Hmmm). I spoke to my GP, whom I have worked with and trusted for some time (or so I thought). She dismissed all my research and told me my fT3 was fine, but I needed to reduce my T4, a little, to 100 mcg. On leaving the surgery I asked reception for my blood test results and discovered that I hadn't even been tested for fT3! I'm so upset. It's a total betrayal of my trust. Anyway, I've started using NDT but still feel terrible (on day 19), and wondered if buying Liothyronine from abroad may be a better option. I'd appreciate any advice and (private message me) any links to European pharmacies that would sell me Liothyronine - I don't travel due to very poor health and lack of money. Thanks
Ali
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alibob63
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I was on two grains (130mg) NDT, but have been informed I've rushed it (rT3?) , so have gone down to 1.5 grains. I'm just so sick of being ill - about 15+ yr. I only found out about problems converting T4 to T3 in Feb (Trust me I'm a Doctor...). I was led to believe, and accepted that my thyroid was being treated adequately and that I had fibromyalgia. There have been a lot of other physical and mental health problems clouding my understanding - and sadly, a lot of lies & half truths from the medical profession (I was told my fibromyalgia was caused by an addiction to opiate pain killers). I'm getting upset writing this. I've lost so much to this horrible disease. Sorry, back to your question. TSH - 0.28 & fT4 - 21. Thanks for your reply.
You can't know whether or not you are a poor converter unless you had FT3 tested at the same time as TSH and FT4. If TSH is low, FT4 high and FT3 low that indicates poor conversion.
If you were taking 300mcg Levothyroxine when you had TSH 0.28 and FT4 21 I don't understand why your GP wanted you to reduce to 100mcg. You will be under medicated on 2 grains. You need to increase in 1/2 grain increments at 2 weekly intervals until your symptoms resolve or you are taking 4 - 4.5 grains NDT. Ideally you will have a thyroid test including FT3 when you've been taking 3 grains for 6-8 weeks to check FT3 remains within range. thyroiduk.org.uk/tuk/testin...
I still can't see why. TSH is 0.28 is either in range or mildly below and FT4 21 is either in range or mildly above. Neither justifies reducing dose from 300mcg to 100mcg. I think that would be very detrimental to you. Dose adjustments are usually in 25mcg increments.
I don't think my doctor has any idea what she's doing with hypothyroidism. I think they've probably had some kind of practice meeting about T3 prescribing etc and someone's been shocked at the high levo dose. She told me not to take NDT as it was full of 'god knows what' and didn't come from a safe source! At that point I'd given up anyway.
I've never had any improvement, or an increase, in symptoms when levo has been increased or reduced/stopped. Though I did notice some hyper symptoms when I went up to 300mcg. Thanks
You weren't biochemically over medicated on 300mcg but if you *felt* over medicated a 25mcg dose reduction would have been in order.
NDT is listed in American and Canadian national formularies and pharmacopeia. If a GP wants to know what is in NDT and in what quantities (excluding Thai NDT) all s/he has to do is look it up instead of making a totally wally of herself.
Dear Hiya, i relate so much to what you have said and it's almost me to the T, so to speak. I was a Nurse up until 5 years ago when i contracted Meningitis, and am now a mere shell of my former self. I was also studying Psychology at the time but that also ended and have been ill it seems ever since. I was diagnosed with an Underactive thyroid 12 months later, and have been on everything and anything to try and help my symptoms. It seems that nothing suits me, and have tried just about everything. I felt dreadful even when my tests eventually came back at peak levels which is why I was sent to a, Clinical Physician for a second opinion, and was told that I was suffering from Fibromyalgia and CFS, wow, that started to make sense. I accept now that this is probably the root cause of my feeling so unwell but it hasn't stopped the nasty side effects that i get from taking any medication for the thyroid and in particular Thyroxine, this seems to be the worst for me which is why my GP has cut my dose in half in order for me to be getting at least some treatment. I am only taking half a 50mcg tab every second day and can cope with side effects on this. I'm only telling you all of this in order for you to have somebody to relate to, and understand where you are coming from. I am no longer working so can at least lie down when feeling really bad. It's not the ideal but its okay for me right now. I do so hope and pray your outcome is more positive. I truly wish you all the best and that things will settle down quite soon for you xx
Do you know if your thyroid issue is autoimmune? Have you every had antibodies tested? If they are high then this is autoimmune called Hashimotos (most common reason in Uk for being hypo.)
If you have Hashimotos then changing to gluten free diet often greatly improves symptoms and can reduce antibodies
Get copies of all your recent Thyroid blood tests from GP. You are entitled to them under data rules.
Very common for us to have low vitamin levels. Have you any recent test results for vitamin D, folate, ferritin & B12. Important to also have the ranges (figures in brackets after each result)
If vitamins are low we can't use the thyroid hormones, so important to get these right.
300mcg was high dose. Do you have gut or digestion issues? Been tested for coeliac? Taking other medication?
Do you take thyroid hormones on empty stomach & nothing apart from water for an hour after. No other medication at the same time. Some (like calcium, magnesium, iron or HRT must be at least 4 hours away)
Private blood tests for full thyroid & vitamin tests are available from Medichecks or Blue Horizon - £99 for DIY finger prick or small fee for getting blood drawn via local to you private clinic
See Thyroid UK website - page on private blood tests
I've got test results. I do have Hashi's, not tested for vits and minerals. I can't afford blood tests unfortunately. I've not been taking NDT on an empty stomach, as I've found lots of conflicting info. So it's better to take NDT on an empty stomach? I don't seem to have any gut issues, but haven't been tested.
Lots of other info on the Thyroid Uk site as well which may help you. Everything in the Thyroid world works very slowly so please be patient t as rushing it can present more problems. When I changed over from Levo to NDT I stopped the thyroxine 100/125 and started on half a grain and added half a grain each couple of weeks till I was up to 2 grains then went down to a quarter of a grain at each increase and I still ended up taking too much! Don't forget you still had an amount of stored Levo in your body when you stopped it and this helps to tide you over till you get nearcto the dose you need. I got up to 3 grains. Endo told me to drop down to 1.75 but I stayed on 2 for a while but then still needed to drop down again!
We start very low as our bodies need to get used to the T3 as well
I was also diagnosed with FM, incorrectly, when I have secondary hypothyroidism. After getting no help from my endocrinologists, I self-medicated. I feel much better for taking NDT, but had an issue with Thyro Gold, which is the second one I tried. I was fine when I went back on to WP Thyroid, & also when I added T3. Perhaps the brand you tried does not agree with you, as some contain fillers that disagree with people.
I initially used the Barnes basal body temperature test as a diagnostic
tool, & to help me find the right dose of thyroid hormones to take.
Monitoring your pulse might also be helpful. Now I'm used to how I
should be feeling, after nearly 40 years hypo, & consider a return
of FM symptoms as a sign I'm undermedicated.
It's important to maintain good nutrient levels, so make sure you eat well & take any supplements necessary to convert the thyroid hormones. Some people also benefit from going gluten free, though it takes a while to get out of your system.
With the debate regarding the NHS stopping the T3 for patients. As I live in France I decided to try for myself, although I don't actually use it. It was just an experiment.
Friday I walked into my local pharmacy which is in a very small town and asked for some without a prescription. The guy went on his computer and told me that he would order it in for that afternoon. I ordered two boxes of Cynomel 0,025 mg. 30 tablets in each box. Two boxes cost me 6.96 euros i.e. around £6. made by Sanofi-Aventis in France.
I wonder what is stopping the NHS buying from a different source, such as this one.
Yes, but why I wonder cannot the NHS buy and arrange the correctly priced product in the first instance. The NHS buyers are not as efficient as those in industry they just don't appear to be accountable.
Nobody in the NHS is accountable. My friend's husband was killed by a consultant administering an unnecessary morphine injection although it clearly stated on his records that he was intolerant and should never be given it. My friend has all documentary evidence and has been to her MP, the Health Minister, the Chief Coroner, the local police and the CID but nobody will touch it. She keeps getting told there's no case to answer. Big cover-up!!! It's going to be televised in the not too distant future, the BBC and Channel 4 are both interested in reporting on it. The complaints system at the NHS is not fit for purpose and all concerned in this investigation have treated my friend with absolute contempt. They have behaved appallingly towards her and seem to have lost total awareness of the fact that she has lost her husband. The care has most definitely gone from the care profession, I'm afraid it's all about money these days and damn the cost to human life.
That's shocking Caggie61 and, yes, you're right that nobody in the NHS is accountable. As I've found out once you make complaints a code is put on your records meaning that doctors aren't interested in your health. The system stinks.
Do hope that the program will be shown and justice is served although too late for your friend's husband.
- An "optimistic" version: an incompetent management - the lack of knowledge regarding the quality and prices of different brands of T3 and the lack of motivation to research it;
- A "pessimistic" version: CORRUPTION.
I vote for the second one as I cannot believe they can be so stupid.
Forget the ethical reasons. Somebody should seriously go to jail for the how much the NHS has been OVERpaying for the UK-made T3. And they dare to ban this medication on financial grounds... It's hardly surprising the NHS is slowly collapsing if this is how is it being managed.
The NHS does things in a way which is completely the opposite of any other organisation or company.
If a company needs a supplier of 100,000 nails per week to make their product, they have buyers who will do their best to find nails of the right standard at the right price, from a company that is reliable enough and capable of fulfilling a contract every single week of the year, and they will search the market extensively to achieve this.
The NHS doesn't do that.
For drugs, it waits for pharmaceutical companies to come to them. In order to get a contract with the NHS a pharma company has to apply for a license to supply the NHS with a drug that the NHS wants. The company has to pay a lot of money for this license. They also have to jump through lots of hoops to prove that their product is reliable and contains what they say it does.
The fact that the NHS relied on only one company for T3 suggests that the costs involved were too great for other T3 manufacturers to bother applying for a license, when the actual sales they would get in return were small.
I did read recently that one hospital was charged £52,000 for hanging a door - see page 10 :
The make is sanofi-aventis made in Paris France. I only did this as an experiment.
I will also try again at another Pharmacy in two weeks when I visit another town close by I will let you know. No prescription in fact I didn't ask. I just walk straight up to the counter an ask for it.
I am not aware that this is normally possible. I have lived in France for years and was not aware of this - thought it would have to be sourced from further afield.
We have had a few reports of people unable to buy Sanofi Cynomel, in person, over the years. Also a few reports of people able to buy in the same circumstances.
Wonder if it is supposed to be prescription-only but that this requirement is being unevenly applied? Or could it be like Boots in the UK refusing to sell iron supplements without a prescription, despite such supplements being officially over-the-counter?
Yes you could have a point. I am going to try again in a different town next week. In fact every time I pass a pharmacy I will try to purchase some i.e. simply walking in and asking for it, no more than that. I will report back.
Give ndt a good chance to work before you swich to T3. It sounds you haven't been on it for too long. You do need an optimal levels of iron, B12 and D3 for thyroid medication to actually work. "Optimal" doesn't mean "in range". Your iron, B12 and D3 levels need to be optimal for a thyroid patient. HU members will advise you but you need to get the tests done: serum iron, TIBC (or ferritin), B12 and D3. They are basic tests every UK patient is entitled to every 2 years. D3 may be more of a problem as it's expensive and GPs are reluctant to test it. They will have to if you are over 65: blackrockmedicalcentre.ie/P...
It's possible you may need T3 but you won't know it until you get your iron, D3 and B12 within optimal level and stay on ndt long enough to see whether it work for you.
Thanks. I see doc again in a couple of weeks so will ask. Tbh, I've been feeling better for the past 2 or 3 days. I've done more than I've been able to do for years. I have cut back to 1.5 grains too, as I was obviously rushing it (desperation!). Just scared that it's only the placebo effect??? xx
Hopefully it's not just the placebo effect I'm glad you are feeling better.
Please make sure you get the iron, ferritin, B12 and D3 tests done and post them here for advice. Docs have no clue what the optimal levels are for us hypothyroid lot. It's not good enough if they are just in range, they need to be optimal. Vit C and a good vit B-complex is also recommended (e.g. Jarrow B-Right) for good metabolism.
Some people also take adrenal cortex to support their adrenals, if they have suffered (e.g. Thorne Research Adrenal Cortex). It's too early to know whether you need it though. Take your time to adjust your ndt dose and make sure you have the optimal levels of nutrients is the way to go.
Thanks. I bought some Thorne Adrenal Cortex but I'm unsure when to take it and whether I actually need it. Also starting it now may just confuse things. I did suspect I had adrenal 'insufficiency', as I can't wake up or 'get going' for hours after I get up. That's on top of the hypo symptoms. Taking supplements around my other medications seems like a juggling act. I'm supposed to take regular Calcium D3 but find that really difficult! It would be easier if everything didn't feel like such a mammoth task xx
I agree it's too early to start taking Thorne ACE.
Why are you taking calcium with D3? Optimal level of D3 is very important and it's supposed to be taken with vit K2 (100-200mcg). D3 will increase your calcium levels and K2 will direct calcium away from the soft tissues and prevent their calcification (e.g. calcification of your heart). Most of us get enough calcium from our food and taking calcium in addition to D3 may increase your calcium levels too high.
I tried to buy cynomel in Calais yesterday and was told it was prescription only, they had never heard of it and looked it up for me,they only had levo.
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Does anyone know of a doctor in the East Midlands that prescribes Nature-Throid?
Help please! I'm have to switch from NDT+Lio to Levo and Lio :-(
Now adding Liothyronine to Levo... headaches!
Thyro3 (Liothyronine Sodium) - 25mcg (30 Tablets)
