Carrying on from my previous posts, I spoke to a private consultant again tonight. He has a good track record apparently and is a surgeon too.Anyway I emailed my recent results and he said I wouldn't benefit from T3.
He thinks my blood tests are all ok and within range. My free Thyroxine according to medichecks was elevated above their ranges. They look at range 12 to 22 but mine was 24.5 pmol/L.
He didn't think I would benefit from T3 but if I wanted to try it then I should buy some.
I'm at a loss now. Yes I have severe anxiety which came from nowhere and I was banking on it being my thyroid not functioning.
I think I would like to still try T3 to optimise my thyroid and health but haven't got a clue where to start. Has anyone else self funded T3 and where do they buy it?
I mentioned to the consultant that I was getting chest pressure and my cholesterol has been high and all other symptoms but he said it was anxiety. I can understand his reasoning but I've never felt particularly healthy since I had RAI on my thyroid.
Any help would be grateful. Thankyou.
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HelenR23
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I don't have your Condition, mine is Vasculitis, BUT I am getting a 'Bad Feeling' about you Buying/ Taking T3. Your Own Consultant, who probably 'Knows' you Best has NOT Recommended it.... If this were Me I certainly Wouldn't pursue this.
That you are Depressed and it appears NOT to be your Thyroid, indicates to me, that there Might Very Well Be 'Another Problem'. I would ask, to see, your Consultant again and make Him/ Her 'Aware' of this Development. There could even be a Medical Reason why you were not Prescribed, this Drug. So BE CAREFUL, don't just 'Clutch At Straws' in the hope .of Finding A Cure! Sorry to be SO Brutally Blunt Helen, but surely Better Safe- and all that.
Get on the phone, First Thing. and Speak to 'Them' .... You might, very well, be Pleasantly Surprised or, -at the very least- get some Re-Assurance.
lots of people on this forum have to self medicate and source their own T3 Andrew. Unfortunately, it’s the current state of endocrinology in this country and world wide.
No doctor will ever know you best Helen! Was this doctor off the thyroid uk list? I would leave no stone unturned in the pursuit of wellness! Have you ever had a saliva cortisol test completed? Have you tried NDT to see if you have more success with this? Unless your T3 is at the top of the range then it’s safe to say you can at least try T3 safely to see if you get your answers! ☺️
Thankyou for replying. I'm awaiting for my saliva cortisol results to arrive. Hopefully they will be here this week. I really want to try T3 just to improve overall health and not just to cure anxiety. I do have anxiety issues but never to this extent. Even if T3 doesn't help anxiety I want it to optimise my thyroid. The endo I chose was off the top endo list in my area not from Thyroid UK list. Wish I hadn't spend all my money on him.
Do check your spam as that’s where my saliva cortisol results ended up. I so hope you can find the right path to feeling well again.
It seems my adrenals “work just fine” according to the NHS after I battled to get further testing with low saliva cortisol levels so I’m on a self treat path. I believe low cortisol can cause anxiety too & low DHEA can result in higher cholesterol alongside the standard hypothyroid cause of raised cholesterol
As others have said much more wisely that I can do make sure you have optimal ferritin, folate, b12 & D. Unlike you I can convert levo ok but to get to good levels of T3 &T4 I need below range TSH.
So many of us are dismissed as anxious/depressed when in reality we are deficient in something be it nutrition or insufficient/inadequate thyroid care.
As Beau55 says - hardened, self-educated veterans of thyroid disease will tell you that most endocrinologists don’t treat hypothyroidism appropriately. This is why there is a monstrous amount of people who are on T4, yet remain: exhausted, desperately anxious, underweight/overweight, cold, severely depressed, constipated, dry, balding, sleepless/oversleep, chronically brain foggy, always fighting infections… the list goes on.
I understand AndrewT that you are new here if you’d like to understand more about how the standard of thyroid care is failing us, I invite you to read this letter (written by a woman who sadly took her own life due to the improper treatment of hypothyroidism that so many of us with thyroid disease face):
HelenR23 you have every reason to believe your anxiety may be caused by low T3. If you write a post in this forum asking for suppliers, helpful and trustworthy people will message you privately (to protect the forum). It’s really worth a shot, you wouldn’t be the first person that T3 has made all the difference for, and no narrow-minded endocrinologist is worth feeling how you feel.
Ps. How can your cholesterol be caused by anxiety? High cholesterol is a classic hallmark of hypothyroidism… ie. Low T3.
My intention was NOT to Hinder Treatment and I'm Truly Sorry, if my Comments, gave this impression. I was just 'Fearful' that Helen might, however unwittingly, 'Try something' that could Cause her Harm, NOTHING More.
You are right, that I don't know much- if anything- about Endocrinology, or indeed, it's Treatment(s) and Yes I will Read The Article, which I thank you for sending.
Please be assured, that my Comment(s), were made in Good Faith and I intended No Harm at all.
Absolutely Andrew 😊 it’s always going to sound strange to an outsider that sometimes we self-medicate in this community… but until conventional medicine gets their act together it has to be this way for many people unfortunately.
I totally agree relentless search but a bit like Andrew I worry that some patients may be risking their health if they don't fully understand what they're doing with self medication. And everyone is different, with a unique set of health problems. What works for one person could be a disaster for another. Proceed with caution should perhaps be the overriding advice.
I was risking my health listening to NHS advice and suffering hell on T4 monotherapy. I feel much better self medicating on NDT it is nonsense to scare monger about T3, when it’s an essential hormone our own bodies make with a fully functioning thyroid. Used sensibly, it’s a life changer.
Pity the NHS are still stuck in the t4 monotherapy dark ages denying us T3 thyroid hormone therapy as a matter of course. We would not need to self medicate if they treated us properly.
Unfortunately in U.K. endocrinologists are under pressure from CCG not to prescribe due to high price NHS was paying for T3
Some endocrinologist won’t prescribe T3….instead they hint/suggest patients buy online instead (often without advice on even how to start T3)
Wholly unacceptable…..
As price of T3 is now falling (down from £268 per 28 tablets….now £59) increasing numbers of patients are being prescribed
When price gouging occurred (price increase of 6000%) significant numbers of U.K. patients had prescription withdrawn and new patients refused treatment
One of the reasons this is by far and away the busiest forum on Healthunlocked……approx 2 million people in U.K. on levothyroxine…..it’s estimated at least 10-20% of patients on levothyroxine likely to need addition of T3…..only a tiny minority of that number are prescribed T3 on NHS
Unbelievable that the cost got out of hand. I'm sure this forum has saved many people from breakdowns etc. The honest and reliable advice you all give us truly a lifesaver for me. I'm at my lowest point ever and this support is helping me climb the steep hill to health. Thankyou.
Yes Andrew, you have a lot to learn about the state of endocrinology in the UK. Don't try to frighten people here off self-medicating. T3 is not a "drug" it's a hormone and it can be the difference between life and misery for many of us. The only way we can find out is to try it for ourselves and to do that most of us have to buy it ourselves and learn from here how best to slowly introduce it whilst at the same time reducing T4 because the original poster's T4 is too high.
People are in a very fragile state when they arrive here with no help from their doctors and often having spent money failing to get help. We need to encourage them safely. Not scare them off.
I've exhausted all funds on this endo as he was private. Maybe I'm completely nutty and have to put up with this severe anxiety. It's a real mess to be honest as he was the one who said my thyroid was hyper which it was in August and blood tests proved it. It has now gone back into range but he's saying I keep thinking it's still hyper when I know it's not. I'm hypothyroid , it was a blip in august after severe gastritis. He obviously didn't listen and yet another person who thinks I'm an anxious hyperchondriac!!!
No. You are not completely nutty at all, just your thyroid levels are messing with you.
I've experienced this kind of doctor behaviour myself when I was suffering from anxiety. It's like they cannot see beyond the anxiety and focus on that. I've been refused tests and all sorts, terrible treatment.
If you could afford it then a different Endo/doctor would work. If not then summon the cash together to buy your own T3. It's the only way, shouldn't be at all but you need to make some progress.
HelenR23 I’d like to second that you most certainly are not nutty. You are very brave and dealing with one of the trickiest, most insidious conditions around. This forum will help you
Your T4 is over range. For me, that causes all sorts of problems, including anxiety. You would need to reduce your FT4 a bit to start trialing T3, so it might be worth considering a reduction (small, no more than 25mcg and you could start at 12.5) of the T4 to see if it helps reduce the anxiety at all and prepare you for starting T3.
I will reduce but my tablets are only in 100mcgs. Not sure how to cut that apart from in half!! As my GP doesn't think I have a problem I'm sure he won't give me different strengths of tablets. I can't win.
We all use pill cutters or scalpels. I cut my 100mcg T3 tablets into 1/8 with a scalpel, but for quarters I use a plastic pill cutter. Loads available on Amazon and you can usually find one or two in the local pharmacy.
Very fine Levo dose reductions can still be done even if you only have 100mcg tablets eg:
6 days x100mcg + 1 day 50mcg (half a tablet) = total 650mcg /week:
averages out at daily dose of 92.5mcg.
or:
5 days x 100mcg +2 days 50mcg = total 600mcg /week.
averages out at daily dose of 85.5mcg.
( probably best if the 50mcg days are spaced apart to even things out over the week..)
Just a thought having read your previous posts.....before actually starting any T3 .... do consider that you have only very recently gone gluten free due to positive coeliac test , and are also working on improving some low vits ... i would think it would be wise to allow a few months for these changes to have an effect before you change anything else major like trying T3.. other wise you won't know "what's causing what".
if the anxiety has mainly become an issue since the T4 was high, and wasn't an issue before when the T4 had not been so high ?.. then i also think it makes since to try a small dose reduction of levo for a few months to see if that improves the anxiety . High fT4 does seem to make some people on here feel dreadful .
Not that there's anything wrong with trying T3, just that adding it is not always an easy journey, and it seems possible you may yet improve a lot without having to bother with it.
I became horribly anxious. when T4 was high .. a slight reduction in levo from 125mcg to 112.5mcg has improved things immensely (plus my sleep is now much better).. but it did take several months before the improvement was apparent. the first 5 weeks were pretty crap, (felt very hypo) i was very tempted to put dose back up and was convinced GP was wrong to reduce it ..... but very glad i didn't... as 6 months later everything was so much better on lower dose than when i was on 125mcg .
Thankyou for your support. I sourced him from the recommended list of private Endos but not via TUK. He has a good reputation and is a thyroid surgeon. He wasn't concerned at all about my T3 levels. I'm so depressed now. Not sur what to do for the best really.
Thankyou. I live on the Isle of Wight. We have one shitty hospital and one endo who apparently isn't very good so I had to try a private one. What a waste of money. I'm going to try and find another one for a second opinion but may have to beg, borrow or steal the money as I lost my job through all this madness!!!
hello Helen, sorry you are having such a rough time, I don’t know your age but have you looked at hrt? It’s just that anxiety is one of the main symptoms of menopause. Hormones are all interlinked so it’s always a question of balance. I did find taking t3 and t4 didn’t work for me so i now self medicate on t3 alone, and i have felt better although it is gradual and slow. In the last 3 months I started hrt after much resistance as I didn’t think it was for me. I now feel more like my old self and I’m still letting my hormones settle in. Maybe speak to your gp. As for consultants i have never had any real advice from them and when i told mine i was sourcing my own t3 he had no advice or warnings to tell about, just said good idea, we’ll check your bloods still if you like! He added he had several patients who do the same. So take it slow and follow your gut feeling, there are options available.
Hi, I'm 59yrs old and my menopause started around the age of 40. I've had no periods for 9 yrs now so I assumed I'd been through menopause although I get occasional night sweats still. I have just ordered a hormone test via blue horizon. I've spent hundreds on tests now it's getting too expensive. Thankyou for the advice though. I'm not sure what the hormone test will prove. I may post on here for those that are more knowledgeable than me about hormones. Maybe I'm clutching at straws now and have to settle with chronic anxiety. I have a bit of fight left so I'm pushing hard with vitamins etc and trying to dose my Levothyroxine at two different times of the day. I'm going to give T3 a try once I've started to reduce my levo. I didn't realise how complicated everything can be and how long things take.
taking hrt is now considered a lifestyle choice as opposed to something to see you through the menopause transition. There are health issues as with most things so it is a considered choice. I had no periods for five years before starting hrt so I hadn’t realised my issues were related to low estrogen, night sweats being another. I do remember thinking I feel ‘fearless’ again like i did as a teenager ☺️ but calm at the same time. Good luck hope you find what is right for you.
According to doctors anxiety is the root cause of all our problems.I'm surprised they don't blame world hunger and climate change on anxiety. He's an arse, who doesn't know why you feel ill but rather than admit it he'll make it a you problem, not a him problem.
I so feel for you HelenR23. I am in the same boat as you with high, yet unexplained anxiety. It makes life an abject misery. I will no longer go and see an Endo, let alone follow GP advice, which has things so much worse for me. I will come to this, frankly, lifesaving group when I have my latest blood results back from Blue Horizon.With regard to sparklingsunshine's comment, I am actually convinced that Doctors are the cause of anxiety !
It will be interesting to see your new results. I'm not sure if my chronic anxiety is related to thyroid but I'm still trying to up my vitamins and later on I shall try T3 added to see if it helps.
See someone else, this man is a pratt. Pity he’s writing junk like that to your GP. Get the thyroid U.K. list of recommended endos and you could then do a new post asking for recommendations by PM so you can double check they are not a charlatan before shelling out any more dosh.
Just because an endo said you wouldn't benefit from T3 doesn't make it true. The problem is, the majority of doctors don't even know what T3 is or what it does. But, it is the active thyroid hormone, needed by every single cell in your body to function correctly. So, if you haven't got enough in your system, it can cause all sorts of symptoms - including anxiety! But, the majority of doctors don't know much about symptoms, either.
I don't think you've mentioned your FT3 level, have you? But with a high FT4 like that, you're probably a poor converter, so it will be low. Hence why you feel so bad. Go ahead and buy your own T3 and prove them all wrong! It's time doctors were taught a few lessons. As someone else suggested, start a new post asking people to PM you a link to their trusted sources of on-line T3. We're here to help you start taking it.
I don't think he would recognise anything about T3 if it hit him on his nose!
Your FT4 is over range which can suggest poor T4 to T3 conversion
You sound undermedicated... because your FT3 is very possibly low, but without full labs we cannot clarify.
T3 is the active thyroid hormone and for good health must saturate nearly every cell in the body by way of a constant and adequate supply.
Low FT3 = poor health
Anxiety and chest pressure can be the result of low T3, as can raised cholesterol
His reasoning is flawed....anxiety is most likely the consequence not the cause. If a woman is ill and medics don't understand why they very often use anxiety as a diagnosis.
If he says you won't benefit from T3 why does he then say you might buy some and try it.....his reasoning defies logic!
if you do not need T3 then you should not be taking it, it is a potent hormone and must be used with knowledge and respect....his advice is potentially harmful!
If you need it he should be prescribing it....but "penny pinching" may be stopping that happening....his diagnosis is flawed.
This is not "clutching at straws"... it is using thyroid knowledge, logic and scientific evidence.
You are not "completely nutty" you are wrongly medicated and need to achieve your therapeutic dose.
Your instinct that you need T3 is very possibly correct ....you know your own body better than anyone.
Did this endo ask the question, " How do you feel?". If not he missed a vital part of diagnosis.....clinical evaluation! You are more than a clutch of numbers....the old doctors understood this.
I'm pretty sure you need T3....write a post asking for sources. Replies must be by PM.
We can advise you how to use it when you are ready to start T4/T3 replacement.
My bio details my experience with T3 if you are interested
With the correct medication you can feel well again
I’m so sorry HelenR23. How absolutely gutting for you to get brushed off like that. Especially as it seems to have cost you far too much money!
You mentioned this person was a surgeon a couple of times as though that might make him better than an “endo” who isn’t a surgeon—but honestly (and with apologies to any surgeons reading, I’m about to generalise! 😂), they really aren’t. They’re cutters. Not dissing the level of skill required to get that right, but equally there’s huge skill involved in getting medication levels right too—one that’s sadly lacking in so many of the doctors many of us see.
For surgeons, it’s mainly about cutting out the malfunctioning whatever and making good afterwards. Skilled though that is, surgeons tend to discharge their patients to medical physicians once the wounds have healed. Not really interested in the lifelong medicating bit.
And I suspect the Person with the Penchant for Capital Letters who replied to your post above doesn’t know a lot about thyroid conditions. In common with so many GPs. (I don’t agree with their viewpoint, for what it’s worth)
I think you could try T3 without needing to spend ridiculous amounts on another risky Endo. There are enough of us here who self-medicate who could point you towards fully reputable places from which to purchase it, plus provide a steer towards how best to introduce it.
It might be the fastest way of finding out whether it’s going to help. Because, spoiler alert!! - it might not. I hope it does and I think it might help—but rather than having to blow more £100s on more Endoknobs and waste a lot of time in the process you could cut the middle man and get yourself a small dose to try.
This absolutely isn’t something I normally suggest—it would be so much better if you could get a health professional on board—but that’s looking unlikely and it feels like you need some hope right now. x
Completely agree with Jazzw surgeons can be very singleminded. 🤨Conserve your funds to try T3 and get private testing, Medichecks etc. You could take a look at Paul Robinson’s book ‘The thyroid patient’s Manual’ for some additional guidance (think I bought it on Amazon) as well as all the amazing guidance on this forum, by posting your results with ranges.
A quick question. Can different brands of T3 have different effects like different brands of Levothyroxine. I know some people get on better with a certain named brand so it was just a thought.
Private prescription enables access to Thybon Henning 20mcg tablets via specialist pharmacies in U.K. at 50-60p per tablet…..typical daily dose is 2 or possibly 3 doses of 5mcg T3 per day …..cutting 20mcg tablets into 1/4’s
Recommend waiting before starting any T3. We need optimal vitamin levels before starting T3
Wait 6-8 weeks after going strictly gluten free and starting vitamin supplements…..retest thyroid levels to see if improved BEFORE starting T3
Are you reading all ingredients labels carefully. Gluten hidden in unexpected places
Watch for cross contamination. Use separate jam, butter, cutting board etc
cheapest option for just TSH, FT4 and FT3 test
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
Ok. They are expensive but if they help then it's worth it. I've been gluten free for nearly 3 weeks so will keep up vitamins for a further 3 weeks and retest thyroid. I realise now it's not a quick fix. Hopefully my anxiety will subside soon and I can reduce that medication too. My god this is so hard. It's a waiting game isn't it.
I shall do that. I'm on vit d3, magnesium, B12 and waiting for B complex to arrive. I've now stopped Vitamin C. Can't believe how willing you all are to support me.
so are you currently taking levothyroxine as single dose or have you tried splitting as two smaller doses….half dose waking and half dose at bedtime …..can be easier to tolerate and might improve conversion rate
Magnesium supplements need to be four hours away from levothyroxine ….so if splitting your levothyroxine, take magnesium early evening
Vitamin D….if mouth spray an hour away from levothyroxine is fine. If tablet, min four hours and best taken with high fat meal eg dinner
Personally I find mouth spray far more effective as avoids poor gut absorption issues
Yes I've always taken the 100mcg levo early morning on an empty stomach. I could try halving it morning and evening. I'm quite good on vitamin timing. Thyroxine first then 2 to 3 hrs later I start the vitamins. Because my T4 is a little above range I wandering if I should reduce or take 100mcg one day and try and do 75mcg every other day. Could be a problem in cutting the tablets though. My GP probably won't help with tablet doses , he gives out mixed brands and the cheapest ones. The consultant I spoke to who was saying it's all anxiety has emailed my GP to tell him of his findings by saying I'm correctly medicated and it's just my anxiety. Don't think I could win now as GP won't take me serious as I'm labelled ANXIOUS.
oh yes …think many of us got the “anxiety” label written all over medical notes
Get a sharp craft scalpel…..and a weekly pill dispenser
Literally cut 100mcg tablet in half…..take half waking up and half at bedtime
I cut tablet at bedtime….take half then. Mop up any crumbs with damp finger
Remaining half levothyroxine in pill dispenser next to bed….take that as soon as wake up. Personally I set alarm for 6.30am ….take half levothyroxine and first dose T3 and go back to sleep.
Definitely get same brand levothyroxine at each prescription
Work out which brand suits you best….or if one is worse than other
Many people can’t tolerate Teva brand
Then get note added to all future prescriptions
Eg “No Teva brand “
Or “Mercury Pharma (Advanz) Ltd levothyroxine 100mcg “
Hi SlowDragon! I really liked your response to Hellen. Better to take things slowly. Because she's so upset and anxious, I don't think it's a good idea to reduce or even cut/split her dose, this will just complicate things I think.
If taking T3 naturally lowers T4, why would someone have to lower levo before starting T3? I'm new here and jus want to understand. The other thing I see a lot in this forum is that many people cut microgram tablets. My endocrinologist always told me to never cut levothyroxine tablets, as is dosed in such low amounts. It is dosed in micrograms, which is 1/1000th of 1 milligram so small changes in dosage can result in big differences in how you respond to the medication. And I believe T3 tablets are also micrograms.
Yes …I agree …only make one change at a time…..then wait …..this is what makes it such a difficult disease to treat
So many variables
Different brands, doses, timings of doses, vitamin levels and food intolerances
Then add in getting older, menopause, stress, other autoimmune diseases etc etc
Increasing numbers of members find it better to split levothyroxine into two doses per day
As long as you mop up any crumbs with damp finger….it’s fine to cut tablets
Levothyroxine is a storage hormone….in theory you can take whole weeks dose in one go (definitely wouldn’t recommend trying this)
A correctly functioning thyroid would slowly release thyroid hormones through the day. It wouldn’t dump full days hormones in one go
Some members actually split their levothyroxine as 3,4 or even more, smaller doses spread through the day…..but that’s quite restrictive on lifestyle
Splitting as half waking and half at bedtime doesn’t impinge on lifestyle……and might improve symptoms
If no noticeable difference after 3-6 months…..go back to single dose
Yes the doses of levothyroxine and especially T3 are infinitesimally small …..vast majority of tablet is filler
1 mcg = 1 millionth of a gram
It’s like equivalent of one drop in a swimming pool of water
Having recently gone dairy free, I have found I needed to reduce T3 a little…..I can’t tolerate dropping by 5mcg …..have had to reduce as 1/4 of 5mcg tablet per day (that’s just 1.25mcg reduction per day). Wait 6-8 weeks before reducing by another 1.25mcg. Even than tiny dose reduction results in drop in resting heart rate (down from 58-60 to 42-46bpm)
I'm so pleased to be part of this group. Just by learning more about my condition, I feel so much more confident to fight to feel better... thank you for your reply! My last question is if someone starts taking T3 and it naturally lowers T4, why would this person have to lower levo before starting T3, even if T4 is above range?
If you download the csv data into the Spreadsheet app of your choice, you should be able to see which surgeries actually prescribe T3 in Hampshire and IOW.
Or if you want a visual, the map version is quite fun 🙂
Thanks spent a happy half hour on that site working out my surgery has a few hundred people on T4 and one possibly 2 on T3, and to think I felt like the first thyroid case they had come across!
Seems to be a difference between the map and the excel. I checked for my Mum as well.
Missing surgeries on map that actually are prescribing T3. For me seemed better to look at excel/csv. I am only 4 weeks into hypothyroid - my surgery has never issued a T3 prescription in last 4 years - so hopefully levo gets my T3 levels up and I feel well again.
One great thing about self-sourcimg, if that is the decision you make, is being in control when needing to increase your amounts. All without having to have your own little personal TEDtalk with your doctor to get the needed increase. It is the biggest, most satisfying exhale around.
Hi, I understand Andrew T’s concerns. However the general use of T3 in the UK is not encouraged by local NHS groups primarily because of the cost per tablet paid by the NHS. Some, and I hope an increasing number of, GPS are prepared to work with patients who 1. buy their T3 privately and 2. demonstrate the effect of taking T3 by providing test results from trusted laboratories.
T3 can be bought from Turkey by post or from pharmacies there or in Greece at a cost of pence per tablet not pounds as in the UK. Testing by the NHS laboratory Monitor MyHealth is trusted as being accurate and mitigates the risk of harm through inappropriate dosing.
The current situation, in my opinion, derives from doctors using an out of date treatment paradigm (the affect of the DI02 genetic mutation in non-conversion of T4 to T3 being a case in point) and overcharging by manufacturers of T3 which has been the subject of (successful) legal action by the UK government.
I do the above and thankfully my GP is of the mind to work with me in a collaborative relationship.
You're very lucky to have an understanding doctor to work with you on this. My GP is very cautious of costs etc with every test or medicine he prescribed. It's all about budgets . Took me 4 yrs to fight to get proper testing for a vestibular disorder (Menieres) again it was put down to anxiety but thankfully the proper testing proved them wrong. So hard to get an understanding GP.
I am so sorry you have had such a terrible consultation. As I read this , this man is not an endocrinologist, he is a thyroid surgeon. I the training for surgeons and physicians is entirely different and, as someone put above, surgeons cut and physicians generally treat with medicines. They do different jobs and I would never trust a surgeon with thyroid medication. He obviously has no idea.
Endocrinologists are physicians.
Your T4 is above range ( and that alone has made me feel unwell in the past with side effects) but your T3 is only 50%. I think you need less levo and some T3.
I would suggest you beg borrow or steal the money to see a private endocrinologist on the TUK list, check they are recommended ( by private message) on here and have a virtual consultation.
Good luck. I was in a similar position until I saw my private endo. He sorted me out with “why on earth have you not come to see me earlier”.
I paid to see the head of endocrinology at our one and only hospital where all my treatment for Graves had taken place, basically to ask what had gone wrong and could I have some help.
There were no answers or help forth coming as to my ill health, the long term consequences of RAI treatment which I believe I was suffering with and my imbalance of T3/T4 levels - with a T3 at 25% and a T4 at 100% - all dismissed :
I too was refused help but told if I like to go on the net and source my own he would see me privately to dose and monitor me and he wrote to my doctor suggesting I should have an iron infusion which the NHS eventually refused me.
I was so angry - but guess what, around 2 years later having been refused both NDT and T3 through the NHS I was ordering my own full spectrum thyroid hormone replacement on the ' net ' learning how to use this little laptop ( work in progress still ) and I haven't looked back.
A thyroid surgeon is probably not the best choice though understand the thinking as you imagine there is some longer term responsibility of his patients, there is not.
He is not concerned about your well being or health down the road, he is very skilled in his field which is in the operation room and spends the most of his time with you when you are anesthetized.
Before I started self medicating I ensured my vitamins and minerals were built up and maintained at optimal levels and as mentioned before Dr P's book invaluable as I had to learn about the body and how everything works together and everything has a cause and an effect.
Your Thyroid and How To Keep Healthy is written by a doctor Barry Durrant-Peatfield and a relatively easy read - I am dyslexic and when my T3 was too low I struggled much more but I managed to get through this book and is still my ' go-to' today some 6 years later.
There will be bumps along the road, I think it's inevitable, but it makes you stronger.
First start reading up and become your own best advocate, feel confident in yourself and get your body in the best possible shape so when ready you give yourself your best shot as no thyroid hormone replacement works well until other issues as detailed, are resolved.
Thankyou for your advice. I am trying to sort my vitamins etc and due to severe gastritis I've had to change my diet so I'm eating healthier plus gluten free now. It's been a long slog so far as I've had a couple of hurdles, one being this awful anxiety 24/7. I'm getting a bit more confident in my decisions , largely from the help of this group but somedays I get overwhelmed with anxiety and gastritis pain so it's a battle. I shall persevere with or without my doctors support so thankyou for helping me on this journey.
My T3 is 4.9 pmol/L. The range is 3.1 to 6.8.My free Thyroxine is 24.5 pmol/L. The range is 12 to 22. I don't really understand the ratios etc but it's been suggested I'm not converting very well.
it might be worth looking into iodine supplementation. Several good Facebook pages with info. Not the bogy Big Pharma makes it out to be. Low thyroid is often due to mycoplasma infection. I am improving since taking Iodoral tabs and Lugols solution. [not together]
I have read things about iodine but normally it states not to use it. There are so many varied answers on iodine. How did you know about your mycoplasma infections?. Not heard of it myself.
Not sure that we can say it’s “often” due to mycoplasma infection—I’d like to think there’d be a lot more research out there if that were true. For some, sure, there’s a connection, for example, in people who’ve actually got Lyme Disease as their primary illness and only find that out years after they’ve struggled to get the right dosage of levothyroxine. But that’s quite rare.
I am really wary of recommending iodine supplementation. I’m glad it’s helping you but iodine used to be used to treat overactive thyroid disease. In the UK it’s also quite rare to be deficient in iodine.
No he dismissed the idea of T3 but said it was up to me if I wanted to source it. Anyway it's cost me a small fortune just to talk to him so I don't think I want to pay another £200 for him to say no!! I am asking on the forum for reputable suppliers so fingers crossed.
I live on the Isle of Wight. One overstretched hospital in crisis. One endo with not a good reputation and nothing private over here that deals with thyroid glands.
oh that is difficult I’m trying for specifics thyroxine brand liquid due to allergy GP phoned this morning with blood results I had yesterday tsh and t4 t3 not back yet my tsh was nearly 15 was 0,01 t4 9 from 18.8 been ringing pharmacy s all day
Quite poorly my heart rate drops to 37 usually mid forties to low fifty
I'm sorry to hear you're having troubles that must be so scary for you. I don't know anyone who has got T3 on the Isle of Wight but a recent reply from someone showed that it has been issued because they sent a link to a map showing places that issue it. My GP wouldn't even contemplate issuing it as he thinks my results are fine and it's just anxiety.!!
hi Helen anxiety is a symptom of thyroid I’ve been on t3 just over five years a endo wrote to g p it took three months for approval because it is a un licensed drug due to corn allergy I’ve been lucky having private health
But this policy doesn’t cover thyroid review s so that’s why I have asked for nhs referral locally don’t know who it is if you ever want a chat just let me know xxx
I'm not sure if I replied with my results but my TSH is 0.38 mlU/L within range, free T3 4.9 pmol/L within top end of range and T4 was 24.5 pmol/L which was above the range.
Your results are similar to mine on t4 only. Unfortunately I react badly to t3 so I can't take it. I feel ok but not brilliant. People think t3 is the answer to their prayers but sometimes it isn't. Start t3 in a very small dose and raise a tiny amount at a time. There are quite a few places that you can buy t3 and I am sure someone will point you in the right direction. Good luck
I had results rather similar to you. I thought long and hard about seeing a private endocrinologist. In the end, I came on here. What a life saver this forum is.
I started taking T3. I source it myself. I now have a Greek friend who brings me some back when he goes. I have enough to last a few months because he’s been a few times over the last four months. But you can source it online too. PM me and I can give you a name there are other options this person has put her prices up recently.
I’m not at my sweet point yet and know there are definitely improvements that can be made. But it’s definitely improving thanks to amazing advice on here.
I’m down on the waiting list to see an NHS endo. I don’t have high hopes, but you never know.
My doctor is amazing and will go with what I say I need. She manages to get my T3 tested. I don’t ask questions and I have no idea how it happens. I’m very lucky. I know that. There are private alternatives that aren’t too expensive.
Vitamins are important and need to be in optimal condition. Try and have them tested so you know what you need.
Dealing with this kind of thing can drive you mad! Having some control is a good thing. I realised what I had to do, and I did it. It was a little scary at first, but I’m so glad I took that leap and did it. I know that eventually with lots of tweaking I’ll get to my sweet spot. Sometimes this journey to health seems never ending.
Hi , yes I'm upping my vitamins now and keeping on the same amount of Levothyroxine for a bit longer then I shall add T3. Hoping my body can cope for that long because the anxiety is dreadful. I'm pleased you are improving now you're on T3. From this forum I understand dosing is trial and error taking it slow. Wishing you well on your journey.
Have you also looked into iron? I know low ferritin (some people consider anything under 100 as low) can cause heart pain and palpitations plus also anxiety/panic attacks. If you’ve had stomach absorption issues, this may also not be helping! Agreed that if your T3 looks like there is room to improve then that is also obviously an option!
I've just started B12 and am waiting for B complex to arrive. My iron isn't too low but has been suggested it could be better. It's a waiting game really as it takes a while for vitamins to take effect. I use an oral spray vit B12 so it can go to blood stream as yes the gastritis interferes with everything.
So I’ve had odd experiences with couple of Endocrinologists one being super attentive and cautious and another writing off my symptoms is thyroid and likewise offloaded to get my own attitude if I want to continue with it… for now I’m persuing other things to rule out other endocrine related things as I can’t actually say without tests if my condition is definitely thyroid related, it’s because the symptoms aren’t all the time, which doesn’t sit well with medics, so I’m now having glucose tolerance test and synacthen test in January.
It might be an idea to look at everything even menopause everything is so closely linked one triggers another as well as getting bloods in a good level regarding nutritional areas … just my experience.
I was thinking of getting a hormone test done but they are so expensive and I'm wracking up the amount I've spent on home tests, counselling etc etc. I had early menopause I think, started getting hot flushes at 40 and still get them some nights and I'm 59yrs!!! No periods for 9 yrs now. I put it down to thyroid and RAI treatment from 23yrs ago. I may save up for hormone testing just to rule another thing out.
Look at advice, regardless of being post menopause you could benefit from hrt … read Diane Danzebrink story you’ll find her on social media Instagram definitely.
I’m definitely not discounting the possibility of thyroid and T3 combination but as you’re aware that’s a lot harder to get proper treatment, but this area is a free you get from NHS from your GP, look at link and see if it could be of help.
Blood tests aren’t reliable for menopause our hormones vary too much, they go on symptoms over age 45…there’s a print out on the website link provided…you can fill in and give your GP.
So interesting reading your post. Im same age and was hyper (Graves). Had never been anxious before...stressed yes but anxious is different. I was lucky to get a consult with Prof Toft before he retired, and didn't go the RAI route the NHS wanted.He wrote this paper before he retired, it's worth reading.
I took control of my own health. Figures are averages,not specific to you and your body.
I had to work hard on my vit D and B12. I've been lactose intolerant for 30 years and cut out gluten.. (I'm now back on gluten ) and I'm really well now.
I got sick of being told symptoms like gastritis, carpal tunnel, sleep issues, bursitis had nothing to do with my thyroid issues.... well 'by coincidence ' sorting vit D, B12, exercise and rebalancing my gut floral means I am feeling great with none of the problems I had and my inflammatory bowel is now not a problem. I do take a tiny dose of Carbimazoleas well.
Good luck, you know your body... average figures are just that...not specific to you.
I would be inclined to ask for a second opinion, email your Gp surgery so that it’s in writing and they will ask the hospital to get one from a different consultant. Some times you have to push to get the right treatment.
Thankyou for your reply. I live on the Isle of Wight and we have one endo working there who I've never met. The waiting list for referrals are months and my GP doesn't think I need to see one that's why I paid to speak to a private one based on the mainland. I can't travel at the moment due to severe anxiety and the cost involved. I may try and save up for a second opinion with a different consultant but funds are limited. My GP is of the mind that my thyroid levels are within the levels expected and he also put this down to anxiety. We have limited doctors here so I can't change my general doctor. Since 1998 when I had my RAI treatment for graves I have never seen an endo. I've just carried on with levo via doctor's advice. It's a bad situation really.
You are going to look back on this post and be amazed when you take the reins and source what you need Helen. Spend those limited funds on trying some additions a la the t3 or changing over to NDT. Figuring it all out, for you.You wonderfully live in a country that allows you to source for yourself - my t3 was just taken at the border - so rejoice in that fact. Yes you can continue to investigate with your GP if there is some other underlying condition/reason if you think there could be. But at the same time in tandem you can be off on your own search with the thyroid medication.
All the best to you. Do not spend one more minute being gutted. Think of it as a breakthrough for you in a positive way. It is not their health, it is yours. And you are taking care of it all.
I would buy my own T3 and test myself…. I had thyroidectomy (cancer) and was put on T4 only I was a angry stressed out lunatic and my levels according to Endo’s was fine I finally got T3 and all of my mental glitches slowly disappeared and my anxiety went away so I do believe their is a connection.
That information cannot be put on the forum, it can only be discussed in private messages. However, if you are thinking of it for yourself then the results you posted in July
FREE T3: 4.32 (3.1-6.8)
FREE THYROXINE: 13.1 (12-22)
do not suggest that you need T3, they suggest that you need more Levo.
I've posted more recent results this week. They are as follows : TSH 0.38 mIU/L range 0.27 to 4.2Free T3 4.9 pmol/L range 3.1 to 6.8
Free Thyroxine 24.5 pmol/L range 12 to 22. My levels are fluctuating every couple of months but these latest ones are the same as my recent doctors ones so it's stabilised a bit.
I think you are in information overload - don't worry and just step back and breathe :
Reread your replies tomorrow or the next day when you can take your time to digest and understand what is being said without too many more alerts coming your way.
I don't want to in any way negate your need for T3, but just wanted to flag up that at the age you and I are there are other hormones that we can be lacking in that when supplemented can make a massive difference to our wellbeing; several friends have reported increasing anxiety and poor sleep have improved dramatically with the addition of HRT (body identical such as the combined Oestrogen and Progesterone patches).
I believe from advice on this site that it can impact on absorption so l take the Progesterone pill at night and Oestrogel pump in the morning and take my Levo 4 hours either side of each which is usually at 5am. I am keeping an eye on my thyroid levels, would like to try the patch but as it's a constant slow release might interfere more with Levo.
It seems to me that there is massive ignorance regarding the FACT that not everyone can efficiently convert T4-T3 for various reasons including having a genetic variation in the enzyme that does this. It is called a SNP and I found out that I have one copy of the gene that can stop the enzyme from functioning efficiently after running my genetics through 23andme.
Why doctors and Endos aren't aware of this is beyond me but there are also many other reasons that extra T4 can end up making you toxic which has happened to me in the past but no I know that I have this issue I just have to purchase the T3 myself. I still have many of the Q & As written by one of the world's most knowledgeable thyroid doctors called Dr John Lowe and he writes very fully about the issue of many thyroid patients not getting well on just T4 medication. Sadly he died a few years ago but Dr Peatfield in this country also agreed with his findings and studies.
I seem to do better on the form Liothyronine than on natural dessicated thyroid medication and one Bitiron is really suiting me plus the addition of 25 mcg thyroxine so my experience has been that if one form of T3 isn't really helping you to do better then its well worth trying another form.
Get Soy in all of its forms out of your life. Recommend site gutsygirl.com . She lists all the names and forms of Soy. Soy is a thyroid killer and it is incorporated in so many foods !
Many doctors misdiagnose patients with anxiety when it’s something else. There’s a whole variety of other things it could be including thyroid levels. I was misdiagnosed for years with anxiety and turns out I have adhd. So many people have to find out what it wrong with them and suggest the tests to the doctor!
hello helenR23 I’m sorry your not feeling too good at the moment, I know where your coming from about radio active iodine treatment I’ve felt exactly the same , wish I had known more about this problem years ago, but you take note of what doctors tell you and believe they know best , my thinking now is (do they ) anyway I hope you get yourself sorted and feeling better soon , I’m sorry I can’t give you any help as I’m probably in the same boat as you , but I know there are several people on here that will help you I’m sure bye for now
Hi l have had extremely high cholesterol most of my life and can’t tolerate statins so my doctor advised to try red rice extract high dose and within a few months I am now low cholesterol
I never believed it would work so I am amazed and my doctor is very happy
Give it a try you have nothing to lose as natural product with no side effects Good luck
I have near enough the same issue - highish T4 - which was said in normal range - bordering on predicting Hyper
I am definitely Hypo symptoms for Years - I saw a consultant 2 years ago who said to me something a bought my results can mean the opposite ! Then it was Covid - so did nothing about it - At the beginingvof this year approached doc - She didn’t know what I was trying to tell her - but has done blood tests all saying normal ‘for-my Age’ I was fed up hearing this as I know my neurological consultant knew what he was talking about - I didn’t - but remembered what he was saying - I did private blood test which showed high T4 - but I wasn’t educated enough to know I needed the rest of the t3 and antibodies tests too - I took test results to doc and she wasn’t interested but said she’d do another blood test - came back normal range again - and told me to come back in January 23 - So I think you should check out Utube on High T4 and reverse T3? To see if you fit that senario - but take the advice from everyone here - buy your own Thyroid tests - Hopefully it will give you the confidence to go back to your doctor with the evidence - It is debilitating going to these lengths - I am following advice here - Getting the full Thyroid Blood screen - and a print out of GPS blood results and make my case again - but I am tired - good luck
Scottii .. this is a very different situation to yours.
HelenR23 was previously hyperthyroid from Graves disease and now has no thyroid left after having RAI treatment to destroy it. She takes Levo (synthetic T4 ) ~to replace the T4 her thyroid used to make , so her high fT4 is due to the amount of Levo she is taking .. and she can reduce her fT4 level by reducing the Levo dose she takes (and she knows what her fT3 level is).
But YOUR High T4 level is coming from your own thyroid ..... you can't reduce it by adjusting your thyroid hormone dose because you are not taking any thyroid hormone (Levo) .. and you don't know what your Free T3 level is ....which means yours is a very different situation.
I think you are still a bit confused about what Reverse T3 is ( which isn't a criticism .. it's pretty complicated to get your head round ) .
You need to find out what your Free T3 level is (fT3) not Reverse T3 (rT3) .
Once you get your private test results back for TSH / fT4 / and fT3 ... post them on the forum and people will be able to help explain what might be going on with you and what you might need to do next .
At the moment your low TSH and high fT4 results do not show that you need any thyroid hormone , they show that you have a little bit too much already , so taking extra T4 or T3 as a medication is not an appropriate treatment for you at the moment . But getting that missing fT3 result will make things much easier to understand and explain.
Sorry of this reply has confused you more , but just wanted to clarify things for anyone else who comes along later because looking for Reverse T3/ HighT4 on u-tube will get everyone confused as there is a lot of incorrect information out there on the subject of Reverse T3,, and it's a very expensive and (usually unnecessary) test.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
if you’d like to understand more about how the standard of thyroid care is failing us, I invite you to read this letter (written by a woman who sadly took her own life due to the improper treatment of hypothyroidism that so many of us with thyroid disease face): 
(I don’t agree with their viewpoint, for what it’s worth) 
My Endo Consultation Disaster…. No T3 for me. 
Endo had finally had finally decided to try me on low dose t4
Endo redeemed, a good consultation and outcome...
