I am looking for advice I have been really struggling since last year when I had to come of liothyronine as it got blacklisted in my area and then the endo wouldn't prescribe the brand I needed as I am extremely sensitive to brands so I been using nutri thyroid and t convert with adrenal support
These are my results from March 19
My dose was 2 nutri thyroid, 2 t convert, 1 adrenal
Tsh 12.21 (0.27-4.2)
T4 13.9 (10-23)
T3 6.6 (3.1-6.8)
I have only ever felt well when my tsh was under 0.2-1.5 and my T4 was around 18 but for some reason I can't seem to get my T4 optimal or reduce my tsh I have upped my dose of nutri thyroid to 3 tablets past few weeks but still feeling really reallt ill, weak and exhuasted etc so only just dragging myself to work and I have a very physically demanding job working with dogs so I am finding work really hard and on every day off iam sleeping and resting in bed
Can anyone give me and direction as to why my tsh is still not coming down and my T4 is low end but my T3 is optimal?
As I only felt well when I trailed myself on t3 only for two weeks before I ran out last year so I am abit confused.
Iad appreciate any advice and also any recommendations of herbal and vitamins to help aid detox and help aid the liver and kidney function as I have pcos and feel estrogen dominance and currently on the contraceptive injection to help reduce estrogen build up as get sever pms.
Thanks
Nicola
Also just to add I had to come off levo and can't tolerate levo oral either after 10 years on it I was never well tho looking back at my results the GP and endo never got my tsh under 1.5 it's only now I have research the nice guidelines and it states it should be below 1.5 to feel well so I am not sure what direction to take next as I can't take anymore than 3 nutri thyroid.
Would NDT or another bovine supplement be stronger and more affective ?
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Merlio18
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Yep it's correct that's why iam so confused IAm taking t convert which helps convert the nutri thyroid but I don't understand why my tsh is so high and my T4 so low ?
But how can T convert help you convert nutri thyroid if nutri thyroid doesn't contain any hormones? That's not logical.
Besides, T convert contains copper, and you probably don't want copper, if you're hypo. You should get it test before taking any. Excess copper can cause nasty symptoms. These bunches of nutrients in one pill are never a good idea.
But, I have no idea why your results are the way they are - strange! Is this the first test you've had on these supplements? If not, what were the others like?
When you take nutri thyroid you take t convert along side it when I asked the advisor and it helps conversion, why would copper affect my levels ? It has 750ug in each capsule if I don't have to convert I feel even illier tho ? I will have a look to see if I can find out if I have had cooper levels tested. As I have tried nutri thyroid on its own and it didn't help the t convert helped me more to function so without it iad be even worse.
I haven't had my bloods taken for ages when I first went onto them back in August last year they brought my tsh to 4+ but now they don't seem to be helping as much but I do need to detox my liver to see if it helps so going to look into some herbal supplements.
'Conversion' means converting the thyroid hormone T4 into the thyroid hormone T3. But, as there are no hormones in Nutri Thyroid - no T4 and no T3 - what is there to convert? Nutri Thyroid is what is called a glandular, it doesn't contain hormones.
I didn't say that copper affects levels. I said that hypos usually have high levels of copper and should not take anymore. The symptoms of excess copper are unpleasant and best avoided.
When you research and you buy t convert it states this the ingredients in it help with conversion to
T-Convert is a targeted blend of gum guggul (mukul myrrh extract), selenium, copper, magnesium and zinc designed to support thyroid function and a healthy balance of the thyroid hormones.
T3 and T4 are both thyroid hormones. The thyroid gland produces large amounts of T4 which needs to be converted to T3, the active form, by a specific enzyme. Often people with thyroid issues may have a problem with the conversion of T4 into T3.
Studies have shown that gum guggal may support a healthy balance of thyroid hormones by increasing conversion of T4 to the active T3.
So it must help with overall thyroid function as I don't feel well just in nutri thyroid alone.
But for some reason even now on the maximum dose my tsh is still high this is my main concern as to why it's not reducing as I can't seem to tolerate levo anymore so not sure what other thyroid supplements to try.
Whatever they say, they are only saying it to try to encourage you to buy it.
If you do not have sufficient selenium, copper, magnesium and zinc, then those ingredients might have some role.
There is a never-ending discussion as to whether Nutri-Thyroid does, or does not contain any thyroid hormone, and if so, how much. See my very recent response about this very question: healthunlocked.com/thyroidu...
If it does not contain any thyroid hormone, or at least, not enough in the dose you are taking, then T-Convert isn't going to make a lot of difference.
Relatively high FT3, despite low or low-ish FT4 is not uncommon. As people become hypothyroid it appears that their bodies do everything they can to maintain FT3. If there is insufficient T4 (whether from the thyroid or from what you take), then that will drop but you still keep FT3 high.
The reason is, your thyroid is failing more and more, and needs more and more TSH to stimulate it. This cannot go on for ever. And Tconvert does not help with over-all thyroid function, but may be helping you convert the T4 your thyroid is still managing to produce. It's the Nutri Thyroid that is not helping because - as Rod says - it either does not contain any thyroid hormone, or it doesn't contain enough. Nutri Thyroid is not thyroid hormone replacement, it is a glandular. Not the same thing.
There are many other things you can try, like Armour or Erfa or any of the other real NDTs with regulated amounts of thyroid hormone in them. I cannot tell you where to get them because I do not take them. But, if you post a new question asking just that, with a title like 'NDT sources, please', or something, then those that do know you will PM you their trusted sources.
But, before you take any more Tconvert, you really, really should get your copper tested because hypos usually have low zinc and high copper, so taking extra copper is not a good idea.
Thanks for your message I will try post to see if anyone can help with sources of other thyroid meds as I need something asap
I will look into the copper test I wonder why they put it in these supplements tho if they are meant to help the thyroid it's confusing.
Also if I wasn't able to get it tested by gp is it the blood or urine test I was looking on medichecks and if it was high how do I go about reducing it ?
I will look into the copper test I wonder why they put it in these supplements tho if they are meant to help the thyroid it's confusing.
Simple answer? They don't really care. They just want to make money. This is the problem with all these multi-type pills. There's always something in them that you don't want or don't need. But, they know how ignorant the general public is on these matters, and they take advantage.
These multi-type things aren't really for people who need them - if you see what I mean. If you have a problem converting, something like this isn't really going to help you, because everyone's needs are different. They are aimed at the Worried Well, who like to think they're doing the best they can for their health, but don't really know what they're doing. And, stuffing things like copper into them make them look good. In other words, they're a scam.
I don't know if your GP can/will be willing to test if for you. I don't live in the UK. You can but ask. I believe it's a blood test, like most minerals. And, if it's high, the only way to lower it is to take zinc. The two must be balanced, so if the zinc goes low - as it does in most hypos - the copper goes high. You redress the balance by increasing the zinc.
I agree with Helvella, sometimes when freeT4 is very low (as you say, T4 is the main hormone produced by the thyroid. Yours is very low, so that shows your thyroid isn't producing much), but freeT3 is quite a bit higher, its a last ditch attempt by the body to convert ultra efficiently and maintain freeT3 levels. What we tend to see when people show that pattern on the forum, is that often this artificially inflated freeT3 doesn't actually relieve symptoms in the way it would if it was due to adequate hormone supply.
My advice to you would be to get hold of a treatment that contains T4 or T3, and dose yourself using best practice. Start out on a low dose, stick for 6 weeks, have a thyroid panel blood test and then adjust your dose. Aim for a freeT3 at the top of the range, and monitor you pulse, temperature, and symptoms. If you can get a prescription and doctor to monitor you then great, if you can't then buy the tablets yourself.
At the moment you aren't taking any thyroid hormone replacement, or if there is any hormone in the tablets its far far too low for you. Your TSH is sky high, and this is the first clear sign of being undermedicated.
Sorry this is a bit brisk, everyone here has great sympathy for your position, because many of us have been there. Its outrageous that your T3 has been taken, and a scandal that you've had to resort to medicating on these tablets that are usually additions to thyroid hormone replacement, not alternatives to it!
I would put a formal complaint into to your local CCG as it is they who have caused this situation & your health decline. When the banning of Liothyronine first came up the BTA put a letter on their website protesting about the harm it would do patients already on it if refused Liothyroinine. I suggest you include this with your formal complaint.
I also agree with the others -you need to get onto thyroid containing medication urgently. Have you tried Natural Dessicated Thyroid Extracts? WP Thyroid is designed for those sensitive to fillers.
Of course if NHS England properly challenged the ridiculous over charging that goes on of medications by the pharmaceutical industry we wouldnt be in this mess! It really annoys me that the response is to ban meds so patients suffer!!!. A GP told me recently that if they prescribe paracetomol the nhs gets charged £4 whereas we can buy it for pennies. How can such a large organisation allow themselves to be so totally ripped off I really dont know!!! Such a waste of tax payers money! Apologies for the rant but I feel so outraged over what has been done to you.
I have been trying to write a complaint and put a case together for months but because of how stressed and overwhelmed it's made me feel and how ill iav been this past year I have struggled to put it together as I am so exhausted after work and on my days off and have bad brain fog but I need to do it asap as I was told you have to do it within a year and it's nearly a year since it all started
Basically it's my endo consultant who is refusing to give me the correct brand of liothyronine as he states he will give me liothyronine in his letters knowing full well he can only give me Mercury Pharma and j can't tolerate that brand as last year I did try it with levo before I started becoming more sensitive and I felt dreadful on it as that's the only brand the hospital provides and I was getting mayne pharma which is free from from my local pharmacy and doing well on before they blacklisted i was going to the gym 3-4 times a week!! And now I can barely get up the stairs and go to the shop on my days off its only when I took myself off both levo and mercury pharma because I had reactions to them and rang 111 i was that ill and the gp wouldn't help me that I found an old bottle of mayne pharma and dosed my self on it for two weeks and the transformation was amazing I felt completely different like I had my life back for two whole weeks ! and then I ran out
Iav sent numerous emails and photos before and after and reactions when on the different meds and the consultant dimissed them all and then manipulated the situation and said if I didn't follow his rules he would discharge me ! So I had to go for a second opinion to a consultant he wanted me to go to that he knew didn't back T3 and he refused me to go to second opinion I wanted !! But the second consultant did actually say he didn't have a problem me staying on that brand but he would not give his athourisation and didn't name the brand specifically in the letter so the consultant wouldn't athourise it and Then he tried to send me to immunology department to test for reactions when I said it's a sensitivity so won't show up you have to avoid and reintroduce and I did ! And I even showed him sensitivity tests to the ingredients and he dismissed them And immunology rejected the referral and told him exactly that had to avoid and reintroduce ! And then he stated I had to be assessed by a physchiatrist for anxiety as he was trying to pinpoint my reactions on that when I said how can you as my face doesn't swell up with anxiety it was absolutely demoralising and ludicrous he just didn't give a shit on the last consultantation I had I was the last patient that day and i was refusing to leave as he wouldn't give athourisation or write to the CCG for the brand of liothyronine I desperately needed and didn't have any meds as he knew I didn't tolerate levo well either and he said I have to go now so i will have to terminate the consultantation as I need to get home to my kids and They are more important!!
Its affected my job and my finances and I was off sick for 6 weeks I can't get benefits even tho I have fibromyalgia and ME diagnosis and they just didn't give a shit how much it's affected my whole life I didn't get paid for a few weeks aswell and my mental health has been shattered I had to go for counselling to just off load the whole situation and chat to someone as he left me living on my own in a vulnerable state and I have very little support From family and my friends don't have a clue how ill I am I think healthy people just don't understand half the time there to busy with there own lifes to even realise I just found it absolutely disgusting that these endo consultants can get away with this as who is actually tracking his patients and how ill they are no one??
Sorry for the massive rant I know there are lots of people in my situation but I really feel somehow everyone needs to expose the way they have been treated as it needs to stop because poor vunerable chronically ill people are suffering at no fault of their own it's all due to the NHSs incompetence and lack of consideration also its not due to costs why he wont prescribe it I don't think as I sourced a pharmacy who would prescribe both brands and they are in the same price bracket !
He is just being stubborn as he is trying to cover himself as he will look bad if he puts in for a case to the CCG for a brand knowing full well I was sensitive before hand to the one he was giving me yet he was unwilling to give me the brand I could tolerate won't he ? It's to do with insurance the endos aren't covered if it's blacklisted to prescribe any other brands other that what the hospital provides ! An they only provide one brand mercury pharma at my hospital how ridiculous no alternative if you can't tolerate it.
Where can I buy wp thyroid from or NDT do I not need a prescription?
😢 I feel your anger and frustration leaping off the page! I am so so sorry that you’ve been treated like this.
I haven’t looked into formal complaints myself yet, I’m building up to it. Are there any support groups that help with this? Any template letters out there? That’s what’s needed in many situations because the patient is often so low with their illness that they can’t think straight or word their complaints without passion and god forbid we bring passion into our health!! 🤬
Much love and health Merlio18, I’m so sorry you’re suffering 😢
Thanks for message it's sad isn't it alot of thyroid patients are suffering like this it saddens me we live in a. Community like this I never thought I would get denied medication to keep me well. I actually had to go for a physchiatrist assessment and the lady who triaged there was really nice and helped give me some info of the correct address and what to include but only thing is you can't include your emotions ha ! Just the facts of what happen and how it's affected you etc. But because I have been so stressed sick and overwhelmed by just having to go back to that situation I haven't managed to write it yet.
Hope you manage to complain you need to ring your local CCG and explain the situation and ask for the specific address of the person who deals with complaints and cases like this I think but I got the info off this lady who works at the mental health team so not sure where she got my address from and you know what to make matters worse she actually understood me and said she felt helpless for me that says everything doesn't it !?!
I feel everyone should come together and raise a petition to expose this treatment but when I asked thyroid UK they said they had already started a petition so really it would be come under it but still I feel people need to speak out and expose the treatment they have had from the NHS as no one really knows how people have been treated they are just allowed to get away with it and we should speak out.
It’s a double edged sword. Most of us are scared to complain incase we get struck off or or treatment stopped. And they’ll do it within the law too. I know legally it should be very difficult to be struck off and legally in your case in particular, having already been on T3 you should have found it easier to have been given that in your new area but that’s not the case. I have complained about my GP and whilst I used to have access to all 10 GP’s at my suregery I now can only access 2! They find ways to try and make you feel very very uncomfortable! It’s all very distressing 😢
Really wow it's awful isn't it I can't believe gps are allowed to treat people like this as what will happen if you get struck off from all GPS I haven't moved yet I live in a little village so only have three in my area and IAm on the second so far but the first I was with all my life untill they blacklisted liothyronine they can't leave you without a gp can they it's really annoying as I wanted to go to a gp in my town and even tried up the road only 5 miles away but they wouldn't let me and there is alot of choice only a few miles away but they said I couldn't as I wasn't in the catchment area but I literally only have one more gp and they are run by NHS not private so they will be no use what so ever like the one I am under but saying that the private one I was under first wouldn't give me oral T4 to try due to costs ! it was a Nightmare how can you be denied a treatment if your sensitive to the ingredients based on costs when there is no alternative I just don't get it surely it's misconduct they can't leave someone not medicated can they?
Clinically my GP has done everything within the guidelines. I am the one getting emotional and compromising my health but arguing that everthing they know about Thyriod health is wrong or misleading. I feel less emotional now that I’m on T3 but I had to obtain that privately and STILL they are dismissive that I actually need it. Many years ago I would have been labelled as suffering from hysterics! 😂 now I’m fighting for my daughter to be treated. She has a below range FT3 and yesterday the Dr who gave me those blood results told me that she doesn’t know why FT3 was tested ‘very odd’ she said (my own GP asked for t to be tested at my insistence) ‘it doesn’t matter that it’s below range, your daughters TSH is very low so clinically there is nothing wrong with her thyriod’
😩 it’s like beating my head against a brick wall, I’m glad I’m well now otherwise I’d go insane trying to get my daughter help. Her being 17 doesn’t help as they think I’m interfering in her health and pushing my own diagnosis on her. I find it intimidating dealing with professionals, there’s no way my daughter would push back, we teach our children to be respectful and ‘do as they are told’ That quickly backfires when we suddenly want them to be all grown up at 17 😩
Aww that's such a same I literally have been in the same situation as you with gps getting over emotional and mad and then them blaming it on us when really were that frustrated because they aren't listening and helping us get our health back its insane then they brand us all with mental health issues ? ! It's awful and just shows how unempathetic these people are. I am glad you are well now on T3 I had to push for it too when I was on it to get it and keep it it is so wrong why are we having to fight for our own health.
Who are you under private and what brand of liothyronine are you on can you pm as I am also thinking of getting a loan from my parents to try go private I developed thyroid issues when I was 20 as well as pcos has your daughter been checked for that too as they go together and iav been suffering for 13 years so I really looking to go private or some other herbal supplements as its affected education and jobs etc constantly struggling and in limbo just to lead a basic normal life.
Before you go down the private route Can you tolerate any Levo? I know it won’t make you well but can you tolerate it? My thinking is, get Levo from GP, retest and re asses symtoms, get a few results behind you and then go for private. I know this is very distressing for you but if cost is an issue then you can save yourself money by getting tested on NHS and also make note of your symtoms and possible intolerant symptoms of taking Levo. Sometimes we have to take a few steps back in order to go forward. Others on here can guide with the type of Levo that may be more suitable. Sorry if I’m talking like you haven’t done all this before or tried other things but it’s hard to gauge an individual when we all just write part of our story from which we (strangers) try to take as much info as possible from. I’m sure each of us individually could write a novel on our experiences but we only post snipppets.
Thanks yeah I know what you are meaning I tried oral levo after I started with the weird reactions to levo and I didn't tolerate that well either but it brought my tsh down but not to optimal but I felt dreadful really bad and that was last September also with the levo I started swelling and getting allergic symptoms so it scared me to try it again as it's what happened when I started to become allergic to paracetamol in 2017 and I made the gp send me to do a allergy trail so I had proof and would have it on my records and it was the same symptoms like mild anaphylactic symptoms which could get worse if I take more so iad be abit worried taking it if you get me. As I ended up in boots when I first started with reactions to paracetamol and they called an ambulance and sent me to a n e and because I was sensitive to antihistamines and it was only a subtle reaction as in small swelling and rash then sent me home
That doctor does not know the real meaning of the word "clinically": adverb
"1. in a way that relates to the observation and treatment of actual patients rather than theoretical or laboratory studies."
What she is really trying to say is that she is too timid to try to actually treat the patient's symptoms. As long as she (the doctor) is "following guidelines" she feels good about herself.
Yes VocalEK well said, so true and yet it is what it is 😩 They don’t sound timid when they talk AT me. They sound intimidating and patronising and condescending! 😩
"I feel everyone should come together and raise a petition to expose this treatment"
Merlio18 In fact the culmination of a great deal of combined work and effort by a group of different agencies and individuals at the end of last year, was a large document submitted to the then Health Minister with the sponsorship of Lord Hunt of Kings Heath and the support of Professor Chatterjee. Unfortunately the Health Minister resigned shortly after; and I'm not aware what is happening currently, with the document - perhaps someone can offer an update on it - but it was very definitely an example of working together to create an important body of evidence. However, petitions about thyroid disorders and treatment are notoriously unsuccessful and poorly supported - the last one garnered only c35,000 signatures even though it remained open for more than a year; and if you consider that there are almost 99,000 members in this forum alone, that shows you how poor was the response.
You can ask ccg for individual funding. My T3 was stopped due to cost and I challenged it and won but it took 10 months. My endo gave me a private prescription during that time that I filled in France for a few euros. It is ridiculous the hoops we have to jump through. Ask admin on here if any template's of letters you can use to save you some time xxx
Thanks for your reply that's good news for you! How did you go about appealing to the CCG I want to make sure IAm sending it to the write place did you have to write alot of detail? I am confused as to why your endo would give you a private prescription as mine won't give me one and won't even apply for funding to the CCG he just keeps writing in his letter he will.give me liothyronine but knows full well I can't take it because he knows I had a a bad reactions to the only brand he know the hospital supply it's ridiculous, what was your experience with CCG did you have to attend a meeting or anything and how come it took so long? Are you on T3 only do you know what brand they have supplied you with or are you still taking the thybon Henning? Also have you a genetic mutation how did you prove you needed it for them to take you seriously ?
I am T3 only ccg refused to pay, I did my complaint by email they said no 2nd time then I pointed out that they could not just take it away. My mp also wrote to them and it was reinstated. My endo had no reservation about giving me private prescription as he knows I will be on T3 for life. I have bad reaction to levo but the hospital T3 is fine, not as good as the French cynomel tho. My ccg told me they had stopped everyones and only a few would challenge saving them lots of money.
Thanks awful they said that so money is more important than people's health how disgusting so are u getting it private still ? Where abouts do you live as in some parts of the UK it's still not blacklisted
I have been on nhs t3 again since March 2018. I am in Leicester where there is a blanket ban unless fought for with ccg funding. I go to the coventry hospital as I took leicester endo to ombudsman where my complaint was upheld, the whole dept are dangerously useless, so I travel to see my consultant. I have to go every 3 months to see consultant,for blood tests and pick up 3 months worth of t3 to conform to ccg rules, what a waste of a top consultants time, when i only need an annual appt.
That sounds a big ordeal like my situation did you fight for CCG funding before you went to the ombudsman and how did you go about it as I am trying to write a complaint to CCG at the moment trying to document the whole situation from last year. It's good news you got it upheld have you any tips of how to structure a complaint to get it taken serious I was told to write to the CCG first and when it and the ombudsman they said they couldn't help ?
I got name st ccg and emailed them that my T3 gad been stopped despite my consultant saying I had a clinical need. They had stopped it even though I had been stable for 2 years on it which went against nhs England guidelines and I insisted they reinstated it and I wanted their reasons for stopping it in writing as I intended to involve my mp, nhs England and if necessary the local newspaper. They replied it was due to cost and they don't believe T3 works, so I had them on that, they are not actually allowed to say cost! And I am proof it works for me. It took a few emails for them to give in, only those that fight will keep T3 they know most won't.
In this example I think Endomad had the support of the Endo. It can work several ways. Sometimes a good Endo wants to prescribe T3, but a GP or CCG refuses it.
Yeah I know that's the issue my gp won't prescribe it as they listen to the CCG and follow their guidelines and pass the responsibility to the consultant and he is ridiculous and doesn't care one bit he's just after looking after himself and is the one that's made the situation a million times worse so I was hoping the CCG would see the truth and it would highlight his bad behaviour but still not sure it would get me anywhere but I still wanna try and raise it as mistreatment as he shouldn't of been able to do it and get away with it.
Thanks for your message at the beginning last year when the consultant refused to give me the brand of liothyronine I started taking these nutri thyroid supplements as I read a good review from a lady who was sensitive like me to the meds and it helped her bring back down to normal levels so as i was so desperate to get bk to work as wasn't getting sick pay it was awful I was so sick when he refused to give me the brand and I was sensitive to levo I was off work for 6 weeks with a tsh of 17+ I thought I was dying I was that ill I thought my heart was gonna stop I was getting allsorts of of awful symptoms breathing and weird things with my heart like shallow breathing breathlessness like asthma, heavy chest and pains and a heavy slow heart beat and then palpations was dreadful.
So I started on the nutri thyroid and it actually brought my tsh levels down for first 6weeks to 4+ so when the consultants the 1st and 2nd opinion looked at my blood results in that time the first 6 weeks of me taking them they just dismissed me and let me go on my way with no meds other than these supplements as technically they can just say well when we checked her tsh was in range but no one has been monitoring me for months as in since last September and the lastest bloods I had was only because I made a referral to a mast cell Specialist to rule out my reactions and he tested my thyriod levels in March so in the past 8 months these supplements have stopped working iam not sure why?
A TSH of 4 is still far far too high. TSH is not necessarily very responsive or accurate. Really the TSHs of 4, 17, and 12.2, all have the same interpretation, they all show that you're hypothyroid. The differences don't matter so much. Some people can be extremely ill with a TSH of 3, others have a TSH in the 20s without being ill.
It may be that your TSH took a while to rise after you stopped your T3. When we're well medicated, and the TSH gets low, it can also sometimes get a bit quiet and slow to react.
Yeah I agree I feel ill anywhere above 1.5 really so when I was 17 + I was bedridden and when I am now 12+ I am really struggling at work and don't leave house really when off work just resting and sleeping but it's no life Iam only 32 so I hope the CCG pay attention and in the mean time I find an alternative that gets my tsh under 1.5 when it was under 1.5- 0.5 i felt the best really so gonna aim to try get it to that some how. What meds are you taking ?
I buy my own NDT, aw many do. I've got a very unusual response to thyroid hormone replacement, and need a super high dose. My consultant just will not do anything.
I'm only a few steps away from bed bound now, but I'm a million times better than I was before self medicating, and can now do gentle things in the house and go for walks round the block and things.
I am a big advocate for not working if it's too hard. Getting signed off is one option, trying to get sent to Occupational health within work, and most importantly being defined as disabled (which means you get the associated rights) is another route. See if you can get your contract changed to part-time, or have any alterations that would make your work easier, like less standing, walking, early meetings, etc.
Hi thanks for reply the problem with work is one of my Supervisors has thyroid issues and just basically listens to everything the doctors say and just takes her pills and thinks she's fine and the other has fibromyalgia and takes loads of CBD oil and I also have the ME diagnosis but when I was truely medicated right the majority of all these symptoms reduced that's why I believe half the population with these joint conditions are not medicated right but I had to push for the other two diagnosis to try support me in my previous job as they are classed under the disability act I think where as thyroid issues ain't ideally if I could iad sign myself off for a few months or not work but I only get paid three weeks sick pay it's rubbish and don't aid get pip and I can't afford to not get paid as live on my own so no other financial support really unless I ask my parents I also work in a very physically demanding job role in a kennels so it's the completely wrong job but saying that i worked in an office previous and still felt dreadful but iam more chronically exhausted now but I think if I get my tsh down i should start to feel abit better the supervisors are also trying to get me to occupational health but I was worried the occupational health wouldnt really have a clue how ill I was and also might say I can't do my job so didn't want it to be a negative and go against me.
That's a shame they have left you in that vunerable state are you not able to see an occupational therapist or get a support worker to help, I can't believe how uneducated doctors and consultants are in the UK for thyroid issues IAm sure if we lived in America we'd get much better treatment. I hope you start to feel better on NDT I wonder if there is another underlying issue why your so exhausted have you researched mitochondria function and had other tests done to rule other things out, have u tried T3 on its own I found it made a massive difference to me not sure why but levo just made me feel rough.
I've got some kind of thyroid hormone resistance. Thyroid hormone has to be carried into the cell by active transport, and its possible for that not to work properly. I've had a thyroidectomy and was fine immediately before the operation, so I'm pretty confident that thyroid hormone is my problem.
I found NDT enormously better than synthetics. I expect because of all the other molecules besides just T4 and T3. I've been on T4 & T3, but haven't tried T3-only. I'm currently swapping out NDT for T3 every 6 weeks, so I may get close to it sometime. A large dose of T3-only is the standard treatment for hormone resistance, but I started on NDT before I knew I had that problem.
Most patients take a mix of Levothyroxine and small dose of T3
Everyone is different in what levels of FT4 and FT3 suit them
Many of us need good FT4 and FT3.
If you only take T3, then FT4 will be very low
Email Dionne at Thyroid Uk for list of recommended thyroid specialists, many can and do prescribe T3
Strongly recommend getting full Thyroid and vitamin and essential to do so before seeing any thyroid specialist
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if under medicated
Good vitamin levels are essential for good thyroid function
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
I have become sensitive to levo and many drugs and can't tolerate mercury pharma or sigma liothyronine the only liothyronine I did well on was mayne pharma which is free from and has hardly any fillers, every other liothyronine have similar ingredients if you look they all have Maize/corn starch, lactose, possibly not gluten free etc and I did actually get a third opinion from a consultant in Chester I think as I did contact thyroid UK last August and they said that it was for my current consultant to apply to the CCG and formulary to ask for the brand to be added to the hospital list but he has dismissed my emails requesting him to do so.
I use to take levo and T3 but I wasn't really well but better than on levo on its own which I struggled on for 10 years but it was only when I tried mayne pharma on its own I really truely saw a massive difference it brought me from feeling about 40% functionable to 80% so I am not sure whether they would just give me T3 on its own or not as when I tried to reintroduce levo I had bad reactions like allergic reaction and i know as I have been declared allergic to paracetamol in 2017 so it was the same symptoms but the consultant still dismissed me it's ludicrous even after showing photos as proof I even showed my local pharmacy who could tell straight away from the photos so it baffles me how he is allowed to get away with what he's doing. I have many food intolerances as leaky gut and am grain and gluten free and have very limited dairy intake only have milk in abit of chocolate which I need to wean off aswell as trying to ear low sugar diet as I have pcos syndrome too so have insulin issues and Iam also under a naturopath /kinesiologist who is working on my sensitives and helping rebalance by energy fields.
I also don't take any meds or supplements prior to blood tests since the morning before
I have hashimoto's I have raised antibodies and a full blood test from a mast cell specialist in march all levels came bk within range see below.
Sodium 142 (135-145)
Potassium 4.5 (3.5-5)
Creatinine 53 (45-84)
Immunoglobulin G 12.2 (6.9-16)
Immunoglobulin A 1.42 (0.80-2.80)
Immunoglobulin M 1.36 (0.50-1.90)
Iron 12.3 (11-29)
Total binding iron capacity 69 (41-77)
Transferrin saturation 18 (9-47)
Serum folate 11.7 (3.1-20.5)
25 hydroxy vitamin d 114 >50nmol but d sufficiency
Active b12 halo >128 >70pmol vitamin b12 replete
Hep2 anti nuclear antibody negative
Anti-TPO antibodies >1300 (0-60) HIGH
Anti-Thyroglobulin abs 298 (0-60) HIGH
Serum IgE level 51 (0-81)
The only thing that is abnormal are my antibodies and thyroid panel and iron slightly on low end so not really sure what else I can test for.
Also forgot to add IAm based in North West Lancashire
Iam gluten free and don't tend to buy foods with soya in at all. I have no clue why I started reacting to levo or why iam very sensitive to alot of medications and one being the different brands of liothyronine, I have had several sensitivity tests and all show lactose, corn/ maize and gluten to be an issue but iam not lactose intolerance by the NSH test.
If you research some will have traces of gluten they are not totally free from the only brand that is free from gluten corn and lactose is mayne pharma even though it still has microcrystalline cellulose in I tolerated it really well.
Teva has mannitol, maize starch and microcrystalline cellulose in it plus acacia that some people are sensitive too
Mercury pharma has lactose Maize starch, acacia and industrial methylated spirits people can be sensitive too
And thybon Henning has lactose Maize starch and microcrystalline cellulose, which people can be sensitive too
I have shown up sensitive to lactose corn/maize and gluten and there is not one medication other than mayne pharma that doesn't have any of them in.
I am not sure what exactly was causing my reactions and sensitivity but I don't eat corn or lactose or gluten from my diet so it seems like the only way I have been consuming them for years is by the medications.
Am sorry to hear what has happened. Awful for you! Have you tried asking your GP to state on your prescription your preferred brand of T3?
My GP has been very willing to write specifics on my scripts such as specifying brands. This means the pharmacist can only issue that brand. You can take your script anywhere in the country. There are some good online pharmacies that are very helpful. Look at Thyroid UKs list on their website.
If your local CCG has restricted the brands of T3 that can be issued then I would still complain direct to thrm. I doubt your GP surgery will be offended. Quite the opposite.
Hi no my gp are useless they just dimissed me and say they can't help and it's an NHS practice so because it's blacklisted in my area they say it's the consultant that I have to get in touch with its been awful service iav just been completely fobbed off the gp won't give me a prescription as the consultant won't athourise then to and he won't name a specific brand he won't prescribe in the local community because he isn't covered by insurance he will only prescribe through the hospital so I am basically stuck because he won't even put in a case to the CCG and to the formulary for them to consider the brand I can tolerate to be added to the hospital list and he won't give it me on a named patient basis I have literally exhausted all avenues and he refuses. I really don't know how he can get away with this though surely it's malpractice.
Are you with a private practice gp as only private are usually willing todo what they have done for you if it's in a blacklisted area and also I asked my gp if they would give me a private prescription and they refused I have been expelled from one go as I got that mad at them they were awful so I only have one gp sugery last to gp to and that is run by NHS so unless I move house I don't have any options as I only have three GPS in my catchment area.
Hello ..... I have advised another member a couple of weeks ago about the fillers in most meds and vitamins..... which causes rather nasty side effects... tis in your Nutri Thyroid..... this nasty filler landed me in hospital not knowing why I did some research...
Something called Microcrystalline Cellulose..... or any thing with cellulose in [lots of food products as well some hot choc drinks would you believe ] tis wood pulp cooked in meth at high temps..... could be something you could check out on the web....
Does cause people like thyroid suffers lots of problems Treva med has this nasty .... it binds to the med so in effect your not taking the proper amount...
Have a look and maybe consider another med for you thyroid..
Hi thanks for the info well I know mercury pharma had some nasty fillers in and meth too so maybe IAm sensitive to this Microcrystalline Cellulose you mention? As I was sensitive to Teva levo aswell
what are you taking now ?
how did you find out it was that when you went to hospital what tests did they do?
Your very welcome..... i'm taking Metavive 1..... a granular you can buy online..... taking it slow 1 per day with a second dose every other day of 15mg.... slow baby steps......I have given up with the NHS...and now under a integrated homeopathic doctor... I also was taking Treva.... which landed me in A&E....
Hospital were useless..... through my doc now we discovered all the vitamins I had been taking contained the dreaded MC when I stopped taking all.... with this filler my health vastly improved.... plus the soft drink my husband liked had this MC in it.... made him poorly and he is normal fit.... so now I label check....
Now take all my vitamins in drops so no fillers....but most of the Nutri sups have this MC in ok if you do not have a thyroid ....
Have a look at the site integrative holistic health... item by Emi Miller real eye opener might make sense of your health issues....
Thanks I will look into those supplements are they slightly stronger than nutri thyroid csnninask what where your symtoms aslo? I will look into the link thanks
Hi I have started on metavive 1 ie 15mg I believe =1\4 grain my doc has advised start at 1 then slowly build up to 3 per day.... I would be careful starting on a high dose... metavive has no fillers etc.. met one has more T3 than T4 1 and 11 are pork the highest is bovine and contains all bits of the animal the 1 and 11 contain the glands only...
Metavive is similar to Nutri Throid. Neither of them can publicly state how much thyroid hormone they contain, because they're sold as non-medicines.
There was a thread a few weeks ago where dosage was discussed. The largest size tablet is equivalent to about 2 grain, I think. You can probably find it using the search.
Hello..... symptoms are different to each person..... mine were very severe joint pain in shoulders / blades lower spine to the extent strangers in the street were asking me if I was ok.....muscle cramps.... restless legs..... strange pains top of my thighs..... headaches... visual problems.... no engery dragging myself around.... panic attacks.... normally a happy person so really not me....... finally getting so dehydrated after being sick for hours landed up in hospital A & E ..... who put me on a drip did not have any answer to my problems... bless..
Dragged myself to do Xmas so ill.... my GP prescribed some meds morphine for one for the pain which knocked me out for days.... not a way to live life.... after Xmas in January I stopped taking the Levo all meds etc....and bingo the lights came on.... felt so much better although still had to sort my thyroid out...... Thats when I started my research..... hence the MC problem hope this helps....
Nutri thyroid may not contain any thyroid hormones at all, that's why it is an over the counter supplement. Never heard of T convert. You need proper replacement hormones. I'd be wanting a retest as free T3 looks too good compared with others and with that level you should feel well. Were you taking any B vitamins or supplements containing biotin in the week before the blood test? If you want to stay with a supplement, I'd change to Metavive, or Thyrogold - but they are expensive. If it was me, I go for NDT or levo plus T3.
Hi No I took myself of all supplements last year when I started to become sensitive to stuff iav just been taking the nutri thyroid but I did reduce my dose around march when my bloods where done with tsh 12.21 so I have upped it to the maximum 3 tablets last three weeks or so but still not feeling well I did look into thyrogold before I got nutri thyroid but it looked similar product just you can get it in a higher dose but thought it was more expensive as had to ship from usa and I was only on 75 levo and 5/10 T3 combi or 15 /20 T3 on its own that's why I went for nutri thyroid I will look into metavive and then NDT I think. I did become sensitive to levo so what's in NDT with being slightly different maybe it will be better for me but I think they all have ingredients in that I have showed sensitivity too but at this point IAm not bothered IAm willing to try them but I think Il try metavive first before NDT.
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its only when I took myself off both levo and mercury pharma because I had reactions to them and rang 111 i was that ill and the gp wouldn't help me that I found an old bottle of mayne pharma and dosed my self on it for two weeks and the transformation was amazing I felt completely different like I had my life back for two whole weeks ! and then I ran out 
Thyroid function test
Anyone tried Nutri Thyroid with their Levothyroxine?
Thyroid function tests
Thyroid Function Results 
