My last TSH was 0.11mu/L and as I wasn’t good at numbers anyway I didn’t realise that interperated as 0.1, my new TSH I received today was 0.22 (which is just within Dr. toft’s range 0.2-0.5mU/I) hosp’ lab range (0.27-4.20), T4-20.8pmoI/L (10.8-25.5), T3-3.7pmol/L (3.1-6.8). She did say the consultant at the hospital had replied and said I won’t get t3 supplied but if I want to hear it from the horses mouth then I can make an appoint but they don’t want me to wait all that time and then be disappointed when they say no. From the list of nhs Endo’s I showed my dr one not far away and she has written to them about me and my problems. She assumed he was still working and not retired I said I believe it’s an up to date list. Due to the results she still said I was over medicated and put me back to 75mcg so I will try it and see if I feel a bit better as getting palpitations and head spins.
Confused.com: My last TSH was 0.11mu/L and as I... - Thyroid UK
Confused.com
These results show FT4 is 68% through range
But FT3 is only 16% through range
Useful website to work out %
Suggest you email Dionne at thyroid uk for list of recommended thyroid specialists who will prescribe T3
Vitamin levels need to be optimal FIRST
Dionnes list is the one I showed my dr as I said above so she written to them.. vitamins are ok apart from vit D.
Vast majority of people ether have to see a endo privately for initial trial or self medicate
If your Gp reduces levothyroxine your FT3 will drop even further
Dustpan
Due to the results she still said I was over medicated and put me back to 75mcg so I will try it and see if I feel a bit better as getting palpitations and head spins.
TSH: 0.22 (0.27-4.20),
FT4-20.8pmoI/L (10.8-25.5),
FT3-3.7pmol/L (3.1-6.8).
Of course you're not overmedicated. Your TSH is just a smidge below range, your FT4 is 68% through range and your FT3 is a paltry 16% through range. They are a bit lower than the previous results you posted and were discussed yesterday.
I imagine lowering your dose of Levo will make you feel very unwell, it will lower your FT4 and there wont be so much to convert to FT3, and your conversion is poor anyway, so your FT3 will very likely lower and it's low T3 that causes symptoms.
Your doctor is dosing purely by TSH which is completely wrong. TSH is not a thyroid hormone, T4 and T3 are the thyroid hormones and they are what make you feel well or not. TSH is a signal from the pituitary, it tells the thyroid to make hormone when there's not enough, so if FT4 is low then the signal will be sent and TSH will be high. Your pituitary recognises that you have a decent amount of T4 so it's not sending the signal. I have great difficulty in understanding why doctors have this mental block about this and are slaves to TSH and completely ignore the actual thyroid hormone levels.
The trouble is I’m not sure what to do I feel dreadful on 100mcg then feel better by about 3.30pm then go down again at 7pm. I dont seem to convert well so it doesn’t matter what the dose my conversion is crap. Sorry I gave you August results by mistake that’s what comes of being tired all the time. Latest t4 is 21 range as above t3 is 3.9. Please don’t tell me I’ll feel worse, the brand is mercury pharma which is meant to be good. I wake with sweats and palpitations and she said that’s overmedicated. If 100mcg makes me feel sick what would 125mcg do.
All very good information you have received .
Just add my experience. Your results mirror my own some time ago . I had very similar symptoms to the ones you describe.
In my case it took the addition of T 3 .
It was then the apparent symptoms of over medication got better .
Good luck
@ Dustpan You need T3 to make T3. So you can take as much T4 as you want and all it will do is make you feel crook if you're not converting it.
If you can get you hands on it, try adding a little Synth T3 (10-20mcg) or NDT (30mg) each day and reducing Levo T4 back to 50 or75mcg
Hi Susie. I so agree with your last comment re TSH .
The way it’s used to ,usually , reduce dose is a little less than astonishing when thyroid levels are in range . 🧐 What don't they understand about it.
In my case it’s the first time I have been well despite TSH 0.02 . ( for some time now )
My gp is good but on occasion I see a endocrinologist she asks for GP to reduce dose as I am thyrotoxic 😖
Thanks to this forum and your advice I have quality of life now . I am very grateful . X
You are NOT, repeat NOT thyrotoxic. You are undermedicated and need T3. Is the doctor trying to kill You?!!!!!
Do you feel "Wired"? Do you have any tremor when you stretch your hands out in front of you, fingers spread, palms down?
But it's not necessarily the doctor's fault. It's the TSH obsession they are taught.
I had a similar problem, except my conversion is fairly good. Had to take a smaller decrease from 100mcg to 100/75 alternate days just to prove I was not over medicated.
After about 4 months, including a threatened further decrease if TSH didn't come up within range, I developed breathlessness and swollen ankles. So my heart had to be checked, which was thankfully ok.
Eventually a good doctor in the practice gave me a "Trial increase" back to 100mcg. It's still not enough of course. Hoping to get another increase soon, but even with a good doctor it's a battle.
Susie can I just ask if it will do any harm to carry on using 100mcg and not go down to 75mcg as you said I will feel worse if I go down. Thanks
It shouldn't do any harm as your FT4 isn't at the top of the range so there's some room to increase it but you've said you feel "dreadful on 100mcg Levo then feel better by about 3.30pm then go down again at 7pm."
I wonder if you're one of those people who do better splitting their dose. Theoretically it shouldn't make a difference as Levo is a storage hormone not a quick acting one but there are a few members who have said splitting their Levo dose helps.
You just have to be careful that FT4 doesn't go over range. If that happens then excess T4 can possibly start making reverse T3 rather than free T3.
But I think you know from all the replies that what you need is T3.
Yes I’m just thinking of staying on the dose until I see an endo, I’m hoping that the one that my dr wrote to yesterday will reply before the one In November who will apparently refuse. I have to say that the endo that she wrote to is not on the up to date list of Endo’s but I didn’t realise until I got the new list last night. He does still work because I put his name to the hospital on line and it came up under endo department so maybe he’s stopped prescribing t3 but I’m hoping not. I can’t travel on any public transport as I have a phobia and driving is not good at the moment so I’m hoping to find and endo near me and he seemed ideal. Also I had a better nights sleep last night so I’m not so fuzzy headed and only slightly nauseous but that could be coincidence. I take my Levo at night now as I felt terrible all day when I took them early morning , I started doing that a couple of days ago.
If the tsh went very low that doesn’t necessarily mean I’m over medicated does it, it could mean a problem with pituitary gland
A low or suppressed TSH doesn't necessarily mean that you are overmedicated nor does it necessarily mean there is a problem with the pituitary gland.
I started Levo back in 1975. I started to keep a record of my results in 1995 and that was one of the very few times my TSH has actually been in range, albeit low at 0.5 (0.0-6.0). My FT4 was always near the top of the range or over range, I needed it there to feel anything like well.
Things changed and I became unwell, long story but ended up seeing an NHS endo in 2002 - for me the very worst thing I could have done. He didn't like my suppressed TSH nor my high FT4 so he set about reducing my Levo to increase my TSH and he achieved this in 4 months and managed to get my TSH just into range at 0.4 (0.27-4.20) but by doing that my FT4 had dropped to 29% through it's range and my FT3 was 0% through it's range. I was desperately unwell but he didn't care, he had achieved his precious goal of getting my TSH into range.
My GP disagreed with him because she could see how ill I was, I sacked him (with her approval) and she immediately increased my Levo.
I stayed ill for 2 years, needing to be looked after, with a higher and higher FT4 and suppressed TSH. I got up to 200mcg Levo and FT4 of 34 (11.8-24.6) and still not well with a GP who hadn't a clue and NHS lab which didn't test FT3. I then found this forum and learned a lot.
I found out I had generally poor nutrient levels and poor conversion. I then took over responsibility for my thyroid health myself. I still have a suppressed TSH but with the right doses of Levo and T3 my FT4/FT3 levels are within range and where they need to be for me to feel well, along with good nutrient levels now. I am most definitely not overmedicated.
Apart from 4 occasions when it scraped into the bottom of the range, since 1995 my TSH has been suppressed. I don't have a pituitary problem. I am not dead yet. I don't have osteoporosis and it hasn't caused atrial fibrilation.
Am I bitter - yes because I have lost so many years of my life being unwell due to doctors having no idea of how to treat patients with hypothyroidism, and that includes the endo.
Do I regret taking things into my own hands - not a bit, I wish I'd known years ago what I know now.
Sorry for the essay, this bubbles over from time to time, and there's more than I have written. So my advice is to always get pro-active, learn, understand, challenge and if all else fails take control, don't allow the ignorance of doctors to rob you of years of your life like I did.
Good grief hun I am so sorry you have been through all that, my gp doesn’t seem to understand about the problems that go with having no thyroid. Can I ask do you source you t3 over here or abroad. Brexit apparently I’m hearing may make it more difficult to acquire from abroad. By the way I’m so glad your feeling ‘better’ thanks to yourself and thanks for sharing your knowledge. It is difficult to grasp at times and I’ve probably asked the same question a million times on here but luckily Iv not been banned yet 😂
Brexit apparently I’m hearing may make it more difficult to acquire from abroad.
As far as I can see, Brexit may affect UK prescriptions for T3 being filled by German pharmacies as they currently do.
The only other thing I can think of is once Brexit has happened, then anything we order from Europe (including T3 without prescription) will be treated as anything we order from anywhere else in the world, i.e. there is a monetary limit over which we have to pay VAT and Royal Mail's collection fee, and that limit is currently £15.
I sourced my T3 from overseas, it's not possible to source it without a prescription in the UK.
Don't worry about asking questions, you wont get banned for doing that 
It has been said that the £15 exemption limit will disappear. That is, you will be charged VAT and Royal Mail's customs clearance (or more if another carrier) even if the item is only a few pennies in value.
(The £15 exemption, originally £18, was introduced by the EU with each country implementing a similar limit.)
The other issue is whether the volume of clearances will overwhelm the capacity and result in delays.
It has been said that the £15 exemption limit will disappear.
I got all excited then, I was thinking that it didn't matter how much you spent there would be no extra charges. Then read on a bit further and got very disappointed 
Hello again Dustpan,
The TSH test was originally introduced as a diagnostic tool for diagnosing hypothyroidism. Once on any form of thyroid hormone replacement the TSH is of little relevance and it is the T3 and the T4 that need to be measured and that give the important numbers. Your T3 is very low in the range, you are not over medicated and will not be over medicated if you up your Levothyroxine to 100 mcg.
Since you have Graves Disease the TSH should be discounted all together.
There is a similar post running to yours, please see Argie1: Should I be worried - especially the replies from jimh111 .
Looking at your results your conversion of Levothyroxine to T3, the hormone the body runs on is very low at over 5.5 and you will be feeing very unwell. Most people feel well when their conversion ratio is around 4/1 T4 to T3.
I would have thought you undoubtedly a suitable case for a trial of T3. I was refused a trial owing to my TSH being suppressed, but my conversion was less than my endo's deemed acceptable " cut off point " of 1/5.
My appointment with the NHS endo was a farce, but I wasn't well enough to keep fighting the NHS system, my Graves thrives on stress and anxiety and the more I fought for myself, the more exacerbated my symptoms became.
You might be able to improve your conversion ratio by ensuring your ferritin, folate, B12 and vitamin D are all optimum, but I doubt they could pick up enough to make any significant difference.
Your own thyroid would have been supporting you on daily basis with approximately 100 T4 + 10 T3 and personally, I just think it common sense that when there has ben a medical intervention and the thyroid removed or ablated in situ with RAI, that both these vital hormones need to be on the patients prescription for if, and probably when, needed. If on monotherapy with Levothyroxine you have automatically been down regulated by that proportion of T3 your thyroid produced, and that loss of about 10 T3 equates to about 20% of your daily requirements.
T3 is the hormone the body runs on and is said to be around four times more powerful than T4.
I have gone on to self medicate and I buy my own thyroid hormone replacements.
I trialled adding some T3 to a slightly lower T4 dose and it worked very well.
I also trialled Natural Desiccated Thyroid and that suits me better, it seems softer on my body. The NDT has a fixed ratio of 4/1: T4 to T3 : 1 grain containing 38T4 + 9 T3.
I did also trial going over range on my Levothyroxine to help improve my T3 but all I got were bigger, nastier headaches.
Hi there I’m already on 100mcg Levo, gp wanted to reduce it to 75 but I have ignored and still carrying on with 100’s but I will have to tell gp as I need to be able to get more 100’s sooner than she thinks. My t3 has gone up since last time but only slightly 3.9 at 21.62% through range. B12 is very good and ferritin but vit D is poor, I think that’s down to not taking enough. I use betteryou and I only did one spray when I think I need at least 2 daily. Can I take their iron spray at the same time as other supplements or do I have to leave a space between them.x
I believe iron has to be taken 4 hours away from thyroid hormone replacements.
Probably best away from everything else, though not aware of a spray - interesting.
I couldn't manage the iron tablets I was given, and I whizz down Asda chickens livers into a pate to eat every week.
Ultimately you need more than Levothyroxine - it's simply criminal that you have been left so badly managed. Is there another doctor in the surgery who might be more knowledgeable ?
I don’t think so, my one wanted to put me on alternate days of 75 & 100mcg and another told me to do one day of 75 the rest of the days 100 mcg. It beggars belief.x yes betteryou also does an iron spray. Is any pate just as good for iron. I like lambs liver but not every week.
Well, I was in a bad way, my saliva glands had stopped working and I was having great trouble eating anything. I had extreme diarrhoea from the iron tablets, the opposite to what I had experienced prior to having had RAI for Graves, some 8 years earlier.
I asked for an iron infusion but was refused, as my ferritin was at 22 and just in range.
Despite asking I wasn't offered any alternative iron tablets, so I purchased my own iron supplements, that didn't pset my stomach as much, and decided to try and also improve the imbalance with liver. I wouldn't choose to eat liver, but needs must. I could only manage soft mush stuff at the time, and just blitzed them down with a dollop of Hellmans.
I still take a measured portion every week just to keep myself " topped up " as ferritin needs to over 70 to be of any value in the conversion T4 to T3 and likewise I keep my B12 , vitamin D and folate at optimum levels,
Red meat is an obviously source but organ meat, the liver, kidney and hearts tend to have more iron than muscular meat.
My saliva glands don’t work due to sjogrens
My dentist thought I had Sjogrens but I was negative when I had the lip biopsy.
My saliva started to reappear two years on, I'm almost pain free now, but have much dental work to look forward to. My eyes are now less dry, but I'm still a work in progress.
It is well documented in Elaine Moore's book, she experienced symptoms similar to Sjogrens after RAI. This happened to me approximately 8 years after drinking the RAI. It is also written that if with one A/I disease the chances are that you'll get another, as they tend to run in batches.
Graves is an autoimmune disease and as such it is for life.
There is probably some genetic predisposition maybe a generation away from you, and it can be triggered by a sudden shock to the system like a car accident or an unexpected death.
Some people can go into remission, but then years, or months later the symptoms can reappear.
Graves tends to be triggered by stress and anxiety, and it's necessary to take an active role in the management of this poorly understood and badly managed disease.
Within the Elaine Moore website there are sections on alternative and holistic treatments, sections on how to reduce your own antibodies, reconsidering your work/ life balance, cutting out certain foods, like gluten and dairy, relaxation, and finding some " me " time, for you.
The NHS don't know how to treat or deal with the A/I component of the disease and we are left to try and work through and understand this ourselves.
Do you have a confirmed diagnosis of Sjogrens ?
What medication are you on ?
I also had a lip biopsy on the bottom inside lip still tingles at times. I had a saliogram performed by a lovely consultant who injected lemon juice Into the saliva pockets inside the cheeks because the blood test didn’t confirm it but they said I could have the antibodies, anyway, the result of the saliogram was that there is every sign I have Sjogrens but the lip biopsy showed nothing abnormal. I have 2 lots of eye drops to use every day but the fake saliva for the mouth Ugh! It’s vile so I suck sweets. I find it really hard to swallow at times and I feel as if I’m choking sometimes. The rheumatologist nurse felt in my mouth and said “God, your bone dry” rheumatism is connected to Sjogrens as well. My eyes flair up occasionally but the drops mainly keep it at bay.
There is the British Sjogrens Syndrome Association.
I learnt from them, I thought my symptoms matched, and was relieved I'd found something through my dentist, as I was getting nowhere with my doctor.
My doctor hadn't heard of Sjogrens at all so I left her with all my information, and paid the Association again, for replacement information pack for myself.
There were many product recommendations but I didn't find any that gave me much relief, and I was with constant burning mouth pain 24/7, that pulled me right down.
I was only able to eat mushy things, and the pain unbearable.
I then purchased Elaine Moore's book, as at that time, all I had to go on was low ferritin and a Graves diagnosis from 8 years previously, on which I had had treatment and was told I was " sorted ". I just thought, maybe the Graves had come back.
I then read a couple of pages in the book, and realised it had never gone away, and then I read of the Sjogrens type symptoms experienced after RAI.
I had no help or understanding from my doctor, though I offered her a copy of the book to help us both understand my situation, but she declined, called me a conundrum and I was told to suck ice cubes, and have some antidepressants.
So, I've pretty much been struggling on, by myself with no medical input apart from this amazing site mostly, plus a few others and the books already detailed.
I'm getting there, and so can you. There's a lot to take in, but you too can turn things around for yourself.
I didn’t fancy the radiation as I have trouble swallowing and the capsule is quite large so I had the op on the neck and the only good thing about it is the scar is so small and you can hardly see it. I got dr tofts book from the chemist which stated euthyroid treatment and low tsh but I do need to understand more about the problems we have but the dr’s get arsey if you try and tell them their job. A dr that has never heard of Sjogrens and to suck ice cubes, that doesn’t really instill confidence does it. I hope I will get there with everybody on here and the knowledge, I have to say you seem to know an awful lot as well.x
Well, my RAI was in a tin can covered with yellow and black stickers and was pushed towards me with a metal grabber by a man in a what seemed like a space suit. I had to choose a straw from a box on the shelf and drink down the tin contents and it was like salty water.
I know this taste now, as before all my trouble started some 6 years ago I woke up one night, feeling that I was going to be sick, I swallowed back down, stayed calm and kept swallowing. This happened for three nights, I wondered what I had eaten to cause such a strange thing to happen. I realise now the taste was salty water, and have concluded that this was the remains of whatever had been held in my thyroid.
After this period was when odd parts of my body started drying up. The nether regions first, then the nose, ear, eyes and then the salivary glands in my mouth.
Well, so that's one ball you managed to serve in all the Graves confusion.!!!
The article I referred you to yesterday clearly states those with Graves Disease should not be monitored on a TSH blood test as their antibodies can distort the reading and make the TSH an unreliable marker of thyroid hormone replacement.
Toft doesn't like a suppressed TSH - and he has only come out in print in the 2017 Counterblast to Guidelines article and highlighted the problems that we are faced with because of the current guidelines. He has now retired from the NHS and I believe you can see him privately, it the same old, same old story.
I found his article more relevant to me, in his open reluctance to refer patients for RAI irrespective of age, since I believe this is what happens to unsuspecting patients. RAI is the cheapest option but not necessarily in the patients best interest, the long term consequences of drinking a toxic substance that slowly burns away in situ, isn't good. RAI is taken up by other glands within the body and a recent study has shown that QOL is worse 6-10 years after RAI for Graves compared to treatment with ATD or surgery.
ncbi.nim.nih.gov/pubmed/306... - surprise, surprise !!!
Tin can, yellow and black stickers, space suits 😳
Crikey that sounds very over the top, maybe the hospital weren't used to given RAI !
When I had it I was handed a tablet in a normal plastic pill pot, a drink of water and off you go home, definitely nothing dramatic involving men space suits 😁
Yes, I know, we've had this conversation before - and it is true - and is what happened to me.
Same happened to me. Was the like beginning of The Simpson’s where the dude is carrying a nuclear thingy!
Sorry, but I've never seen The Simpsons ( think it's an age thing ! )
Me neither it didn’t appeal to me but I now have this image in my head of Cazmania7 carrying a nuclear thingy whilst wearing a spacesuit.
Good grief how awful for you, you would think as you are unwell they would make it as easy as possible for you to go through. Dr Toft emailed me to say he is retired from medical practice therefore not allowed to provide advice and he says as far as the GMC is concerned he is no longer a doctor. If I took the capsule I would have to keep away from people for 2 weeks which would be hard and I wasn’t sure about affecting the dogs, it probably wouldn’t but I was just being safe plus I needed my own cutlery, towels etc so I opted for surgery.
By the way I am unable to open the link above .
Oh, I'm sorry for that - I typed it in as it is written on the Harmony Thyroid uk newsletter - volume11 Issue XXVI 2019.
Do you get the newsletters ?
I'm pleased you didn't have RAI, you don't need to make excuses to me !!!!
Surgery is the better option, if given a choice. It's cleaner and more precise.
Ideally I think ATDs should be considered more longer term than they currently are.
I would also like to see guidelines just for Graves Disease, including the relevance of antibodies and the uniqueness of this disease which seems to find many people left to their own devices.
I think you typed NIM rather than NLM.
This works:
ncbi.nlm.nih.gov/pubmed/306...
GMC details for Toft:
Doctor Details
Results of search on: 29 Sep 2019 at 12:53:19. The details shown are valid at the date and time of the search only.
GMC Reference Number
1315947
Given Names
Anthony Douglas
Surname
Toft
Gender
Man
Status
Registered without a licence to practise
More Details
Primary Medical Qualification
MB ChB 1969 University of Edinburgh
Provisional Registration Date
16 Jul 1969
Full Registration Date
06 Oct 1970
Specialist Register entry date
Endocrinology and diabetes mellitus From 30 Sep 1996 but is not currently licensed to practise
General (internal) medicine From 30 Sep 1996 but is not currently licensed to practise
GP Register entry date
This doctor is not on the GP Register
Revalidation Information
This doctor is not subject to revalidation
webcache.gmc-uk.org/gmclrmp...
Thank you so much - ( still don't understand cut and paste - now my eyes deceive me as well as my brain ) !!!!
Just for reference helvella has kindly thrown up the correct link that I messed up plus info on your elusive friend ????
Yes it’s what I said, he is now retired. Are you on iPad or computer
By the way Iv written to my doctor and included snippets of good pieces from people on here, yours included because it comes across that I know what I’m talking about lol. Let’s see what happens, I will probably get called the the headmasters room for a telling off for not believing in what’s been prescribed to me.🤭
I've an ideapad, why ?
What is an ideapad ? I was going to tell you how to cut and paste, very simple procedure
A Lenovo Windows laptop.
What a funny name for a laptop I've never heard of that one
Thyey have so many models it is astonishing. Names include Thinkpad, Yoga, ThinkBook and Legion.
Yoga!! they’re havin a laugh, what does it do, bend over backwards? 😁
Oh, no, please don't worry - several members have tried to help me.
I just " glaze over " - think the sitcom about how to put up flat pack furniture was written just for me :
I'm dyslexic and find it very hard to follow written instructions on a piece of equipment, that I don't even understand, when the button I press, doesn't " do " what it did last time around.
I'm much improved than in my school days, when I was stood in front of the class and told to read to them. Looking back, why did the teacher think this would help me , forcing this on me at irregular intervals so I couldn't even plan when to " stay home ".
Thinking on, maybe the teacher knew no better, but it had the opposite effect on me.
The humiliation and feelings of being continually nervous have been with me for most of my 70 years, but as a child I didn't even understand words like anxiety and stress.
I took things as the came, thinking we were all upset and struggling as I was.
I knew no different and just soldiered on, as you do, and tried hard to make sure everybody liked me, so the embarrassing times in front of the teacher didn't hurt so much.
Again there is reference to dyslexia and left handedness in Elaine Moore's book.
Thank you for the offer, but I need my nieces little fingers to show me again, as they go so fast, it's more like a conjuring trick !!!!
Your doctor had never heard of Sjorgen’s!!! Oh dear!
Yes, I know, she's the longest standing doctor within the group partnership, claiming to be the doctor with an interest in thyroid so believed I was in safe hands.
She did confess she'd never had a patient with Graves but I simply thought that would mean, she'd go find out, like I would have done had I been in her situation.
Hey ho, there are no other options down here,
I 'm relieved to be self medicating and staying away.
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