My latest bloods after being on T3 for about 5 months :
TSH... 14.5...range....0.30..4.50..mU/L)
T3...3..range.. 3.10..6.80..pmol/L
T4..2.8..range.. 11.00..22.00 pmol/L
My last TSH before these bloods were taken was 19.32..so TSH as come down to 14.5,) but T3 is very low I would have thought being on T3 alone would have made the T3 rise,, my gp rang the endo who as now suggested I take T4 along with T3.. T4 being at 50mg and T3 at 20mg..i was reluctant to take the full 50mg T4 in one go as I always feel hyper when increasing as I have this time going from 10mg T3 to 20mg T3, I know my bloods do not show hyper if anything they show hypo.. But my symptoms are like before when I had hyperthyroidism it's weirding me out, especially the sweating tremor, as I've read on here a fast heartbeat can also indicate under medication to, my gp noted a fast heartbeat when I saw her this week, so I've started lower down on the T4 at 25mg and T3 20mg I'm splitting the T3 in to 2 doses but have been told not to split the T4, I've to take the full dose in the morning along with 10mg T3, the end of this week now and I still have the tremor and the sweating has gone up a notch, I have woke up with a server headache today really bad😔 I'm continuing on 25mg T4 and 20mg T3 for the next week then introduce the full 50mg T4 along with the 20mg T3, I'm hoping my symptoms do not become worse, again I'm wondering why my T3 is only 3 after being on T3 for this amount of time.. Also my calcium has gone up again my last one was 2.44..mmol/L..) its now 2.58 mmol/L... Range... 2.10..2.60..mmol/L.. I have the calcium checked because my PTH is over range, my endo put me on vitamin D some months ago, I asked my gp to do the calcium and vitamin D but they only did the calcium unfortunately so I have no idea if my vitamin D is increasing 🤷♀️..
Thanks in advance ❤️❤️❤️❤️
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birkie
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Hi slowdragon and thanks for the reply,They have checked my adrenals I had the short synacthen test it came back as OK I responded well to the test... Whatever that means, as for the introduction of the T4 levothyroxin im sceptical as you know I didn't do good on it at all, maybe that's why I have a stonking bad headache today 🤷♀️... They have left me with no choice, I asked if I should not just increase the T3 but was told not to, and my gp would consult the endo.. Well you know the up shot bk on T4 OK this time with T3, I'm giving them this next 5 weeks if I can stand being on it, if I become to ill which I did last time on T4 I will by pass my surgery and go to A&E.. I'm just about sick of this now, I've never felt any different in myself even after thyroidectomy, I really think my surgery are trying to get me off T3 because of cost,, 😠
I personally believe that those who have no thyroid gland should be given - at the very least a T4/T3 combination.
They used to prescribe NDT - safely given since 1892 and which restored the health of thousands and doctors concentrated upon the symptoms alone (no blood tests then), but unfortunately 'the wise "men" ( who I assume have no problems with their thyroid gland) have recently withdrawn NDT through making False Statements.
Hi slowdragon ❤️Can I ask you something?? My T3 on my last bloods 7 weeks ago was 4.3....range.. 3.10..6.80..pmol/L.....this was on 10 mg of T3... I increased to 20mg T3 in the next 7 weeks and my T3 is now 3..) I'm I wrong in thinking that taking T3 only would raise your T3 level??? Mine has dropped on an increase is this how T3 works... I'm soooo confused slowdragon and getting nowhere with my surgery 😔 also I maby should have mentioned I had a full scan on my kidneys and abdomen this was requested from the endo at Newcastle for hyperparathyroidism ie kidney stones, the specialist who carried out the procedure said he didn't see any kidney stones but did see a gal stone, he just dismissed me saying he would send the findings to my gp, that scan was done on Sunday 7th Feb I received a phone call to say I need to see my gp about my scan results I have an appointment next week 🤔
On T3 test results are very time dependent on when last dose T3 was
Last 1/3 of daily dose should be 8-12 hours before blood test
Test should be done as early as possible in morning before eating or drinking anything other than water
Looking for FT3 result to be at least over 5.5 .....on T3 only Ft3 result is often at top of range or even slightly over top of range when people feel well
Hi slowdragon ❤️I keep to all recommendations when having blood drawn no T3 24 hours before blood draw, early appointment (to which my surgery always say I'm being picky with appointments 😠) water only no other medication, so its confusing as my T3 was higher on 10mg of T3 medication, and now I've increased in the last 7 weeks to 20mg its gone to (3) range.... 3.10...6.8..pmol/L.. I expected it to be higher than 3...as it was higher on 10 mg of T3... Very strange 🤷♀️🤷♀️
Hi slowdragonGot that wrong, I take my last dose of T3 at 4 o'clock in the afternoon, don't know why I said 24 hours 🤦♀️.. Yes I split my T3 in to 3 doses one at 7 one at 12 one at 4..its very hard sometimes it's dust, I use a pill cutter but splitting 20 mg is impossible without some crumbling I just scoop the bits up with my finger, why do you think my endo refused my recommendation to increase the T3??? The junior doctor who I saw, spoke to the endo on my behalf they suggested introducing the T4, I'd rather just continue increasing the T3 than going back on T4, they just seem to be playing tennis with my meds, as I said before I've woke with the worst headache ever today and I've only been on the 25mg T4 along with the 20mg of T3 for 5 days, also I noticed when the junior doctor was looking at my blood work she said she was not really bothered about my T4 being at 2.8....but didn't like the T3 at 3 or the TSH at 14.5...ok so why did she agree to me taking T4 along with t3🤷♀️🤷♀️ can I discontinuing taking the T4 slowdragon and just concentrate on increasing the T3 as I wanted to...
Hi sallybones❤️Any input anyone has will be grateful I'm at a loss as to why I feel no better my gp and endos have been playing tennis with my meds for nearly 18 months now, we started on the lower dose as the first dose of T3 was 125mg it made me feel awful I had heightened hyper symptoms so both myself and my gp agreed to start on a lower dose at 10mg to see how I go OK bloods not good T4 was always low but that's to be expected being on T3 only, I slowly increase from 10mg to 20 mg T3... But on my bloods done this time my T3 has gone down from 4.3..on 10mg,to 3 on 20mg of T3... So why would this be would it not increase with me increasing the T3 meds, 🤷♀️🤷♀️🤷♀️
Hi birkie I feel for you on the merry go round too and feeling you're not getting anywhere yet you know you are far from well or able to function as you should.
I was put on T3 way back in 2003 and then taken off it because my levels were back to 'normal'. But I do remember it messing with my head. I didn't know anything about workings of the thyroid back then or how important it was to good health.
I've learned a lot from this forum and have paid for private tests so I know what my levels are plus important vitamins etc. Once a year I do Well Woman Ultravit test (Medichecks) Well worth it if you can afford to do it. Or Monitor My Health for thyroid is very reasonable. So I feel more in control when I speak to my GP.
Since 2003 I've developed more and more deterioration in general health til I've come to a full stop basically. Some things quite serious, so again pushing my GP for more investigations. GP accepted my private test results but had to do their own for it to be accepted on their records!!
My T4 has always been low and now its under range but t3 is mid range, though falling very slightly each time, and tsh is just under 1. So my GP has requested tsh receptor antibody test which I'm waiting for the result of.
It was suggested on here some time ago that i may have central hypothyroidism. I've seen 4 endocrinologists all of whom were very patronising and up themselves and were more interested in my Osteoporosis!! All of who said everything was 'normal'. One did do the synacthen test and brain scan but said everything was 'normal'. Apart from I did find out I've got cerebral small vessel disease which none of the neurologists had told me even though it showed up on previous scans!
I've got to the point where I'm in limbo again and trying to plan my next move depending on the receptor antibody result.
I still believe all my symptoms / conditions are related. I don't tolerate medications very well so although I've tried Levo i stopped taking it last year because my heart rate was getting higher and spent the night in A&E referred by GP. Anyway its still high without the levo and apparently it was before I was put on it but I was never told!! Communication skills seem to be lacking between GPs to Consultants to their patients in my experience.
Now I've got Shingles and on anti virals. My weight is creeping up pound by pound though I'm eating very little as my gut motility is getting slower and slower and I've little appetite. My body shape is changing particularly my legs.
Sorry I've rambled on a bit and maybe gone off topic slightly but just shows when you don't fit their tick boxes or what they learnt at med school and text books they are at a loss and in my experience tell you its 'normal for you' and actually what we need are people who think outside the box because we're all different.
Hi sallybonesGoodness you sound just like me.. Only I have no thiyroid so totally rely on thyroid drugs I was in hospital in 2015 with a very bad colitis flare up and I could not stomach the antibiotics I told the specialist I could not stomach tablet form of antibiotics as I always vomited them back my gp took me off them he tried me on 4 types.. He put it in my records I can't take aspirin this was found after I went blind in my left eye being diagnosed with a massive blood clot on my retina.. They gave me wafrin in my arm, then I was sent home with aspirin, I took my first dose with food later I was rolling on my living room floor in server pain my then husband took me back to the hospital where the consultant said I had a bad reaction to the aspirin.. I can't take anti inflammatory meds either, the grasto specialist was flummoxed because I was not recovering after 9 days I told him take me off the introvines antibiotics reluctantly he did.. Hey presto I started to recover, he also noted that I should not take antibiotics, so when I had to have my thyroid removed I put my fears of the synthetic thyroid medication to the surgeon told him all about my past reaction to synthetic medicine he assured me I'd be fine on it.. I don't think I am.. I also have ostioporosis and had the short synacthen test which was normal, I was also diagnosed with hyperparathiyroidism last year in Nov after a high calcium level and high PTH level.. Simply put on vitamin D but gp will not test my vitamin D level to see if I'm responding to the suplimentation.. Its so annoying because having a thyroid condition leaches vitamin and minerals from the body.. And yes your right about the box ticking, I knew something was wrong with me my gp kept saying it was the menupause but I knew different I was proven right in 2018/19 when my symptoms nearly put me in a coma in thyroid crisis... You know your own body no matter what your flipping gp or endo says ❤️❤️❤️
Sorry I didn't realise you had no thyroid birkie, so you are reliant on supplementation and good support and knowledge from the health professonals. It seems they are quite good with straightforward cases but not when you're not. If only they would listen to the patient and not try and make you fit their criteria! Telling you its normal for you,( for me anyway), seems to be their cop out instead of being honest and saying they don't know what to do and just refer you on yet again.
When I looked back at my GP records I'd been low in vitamin D for years and also B12. One endocrinologist told me to take medication for the Osteoporosis another one said not to!
When I've said I had a bad reaction to various medications I usually get the reply "well you're the first person thats said that to me". But if I google it I find many people have had the same experience. I've also been told by various health people in the past that allergies and intolerances don't exist! They do recognise them a bit more now though.
I have Hyperosmia - can't stand the smell of things like perfume, washing powder and so on.
Some years ago I was hospitalised for a week after a bad reaction to a medication, which I was over prescribed, which caused my muscles to seize up and mind to not function. Scary. Looking back thats when I started to go downhill. Hindsight is wonderful. Loss of balance and a load of other symptoms. It stopped me earning a income. Money I've had on benefits has gone toward help for my health mostly.
I made sure its on my GPs records about my allergies / intolerances some of which I was tested for. Some I paid for some were NHS ones.
Everything I've had / got just tells me my whole body is going wrong somewhere.
So for you missing a vital component, bit like a car engine doesn't work without all the doings, you have to think 'they' would try and think round the problem.
At one time hospitals had General Physicians (not the same as General Practitioner) and they looked at the whole person, now its all too specialised almost. I think they could do with bringing them back.
HiYes I saw a lovely general physician at Newcastle who took over my health, I'd spent all my savings on living as I could no longer work, he asked me how I was coping I told him about not being able to work he agreed and said he could not see how I could possibly work given my conditions I also have me/ fibro.. Colitis, ostioporosis ostio arthritis and the thyroid thingy... He requested I be given a form for an inability to work, it took about 12 weeks but I was awarded universal credit, then pip.. Not a fortune by any means, I had to sell my home, because I could no longer live in it as I'd lived downstairs for 2 years using a commode as a toilet, at that time I had a good doctor unfortunately she left and now I have a useless doctor, all other specialists, ect have been slowly taken away and I'm now left with my gp and one endo who I've never seen since my operation total thyroidectomy, totally unacceptable 😠😠
Oh dear birkie. I too had to sell my house which was meant to be my pension but I've had to live off it and it's not an awful lot. I've sat through benefit tribunals and been made to feel like a liar and a crimminal. But for a good friend / advocate's help I could not have coped with them. Just added to the stress.
I think that when you see these people whether it's your GP or a Consultant, they always see you sitting down and posssibly looking okish and you're trying to remain polite and possibly manage a little smile. When you tell them what you can't do anymore because of your health it doesn't quite fit the image they see before them and they stop listening to what you are telling them. The fact that you've just told them you have to crawl upstairs goes out the window. They refer you for yet another blood test or to another consultant and you go round in circles yet again. I can't tell you how many times I've been quickly offered anti-depressants. I once told a doctor I'd scream if I was offered them yet again! EEK! I know they help some people but not me.
I've certainly been told I had / have fibro, me, cfs etc etc but only when I pushed did I get some firm diagnoses like the Osteoporosis one, otherwise I don't know where I'd be now quite honestly. They can now say its my age but 20 years ago they were saying that and I was only in my early 40s.
I still think all these things are connected but they still look at them as individual things. Just my personal opinion.
I have had a lovely GP for many years who has been helpful but in a limited way and a nice new one who I will wait to see or phone consult rather than someone who doesn't know my history.
Do you feel you can talk to your GP and do you feel they listen? Or would you do better with someone else if there is a choice?
If you've the energy, could you ring your Endo's secretary and ask when you will be seen again because you are really struggling? I do these things and sometimes it seems you have to push them to get anywhere.😊😊
Hi sallybones❤️You sound just like me, my downward spira began in 2004 when I was taken ill didn't know what was wrong with me but I was bedridden with it, I was a gym bunny then attended the gym 4 times a week with a trainer, then bam this hit me after 2 weeks and getting worse my mother got a gp to see me he diagnosed a kidney infection, no urine was taken no blood pressure, no temperature, the antibiotics I just threw back, upshot one stone lighter 8weeks in they eventually took bloods which showed hyperparathiyroidism never heard of it before, I know more now and was diagnosed again last Nov.. But back in 2004 I was left for 6wks then blood done again said levels were in range, off you trot, I never recovered changed doctors and went to Newcastle the specialist their diagnosed me/fibro.. Spin on to 2015 admitted to hospital vomiting blood and passing blood from backpassage, 11 days in hospital diagnosis colitis, like you I knew something was going on in my body, what irritates me the most is when GPS dismiss what the specialists report says, in my colitis case, my gp dismissed the colitis saying it was IBS.. But I said the specialist said colitis, gp gave me buscopan, I have since found out through requesting my medical records it clearly says colitis in them, also my gp dismissed my body pain, server in my back, knees, wrists, arms and ankles, he kept saying its fibro.. Turns out its ostioporosis, ostio arthritis when he gave me the results I said so that's why I've been in so much pain, he dismissed it he wouldn't even give me medication for the pain saying take paracetamol, it don't touch the sides, I'm afraid some gps and endos DO have a god complex, I'm due to see the gp next week about a scan I had.. Again I will tackle him on pain meds as taking to much paracetamol is not good for you!! If I get no joy I will e mail my endo at Newcastle he was the one who requested the bone scan and ask him for help with pain relief, as you say you have to push these so called professionals to get anywhere, and it's not right personally I couldn't fight my way out of a paper bag at the moment, so having to constantly push your gp to help you is totally wrong.. 😠
Thanks slowDragon ❤️I fear I will need to discontinue the T4, if my symptoms become as bad as last time, only the next few days will tell, I've managed to take my painkillers for the headache, I will see how I go. Then I will do has you have suggested.. Makes sence.. 👍👍👍
Hi slowdragonYes they didn't do vitamin D, even though my endo request that I have suplimentation and vitamin D tested to see if I'm responding to increase, I'm also using the better you vitamin oral spray 1000,as doc only give me 800iu vitamin D gel capsules, one per day I use the spray one pump per day, 👍
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
Many of us need 2000-3000iu vitamin D daily even as just a maintenance dose
Important to regularly retest vitamin D at least annually, but really twice year, especially while working out what dose you personally need to maintain vitamin D at least over 80nmol (and around 100nmol maybe better)
Vitamin D and Covid
Notice how much vitamin D many of these medics are taking
Maybe a stupid question, but do you always take your T3 on an empty stomach and wait an hour etc. just like levo? You are, of course, only on a very small dose, so you can't expect your level to be very high, but I would have expected it to be higher than that. Do you take your vit d at least four hours away from T3?
Of course, you're very under-medicated, and your doctors are trying to avoid increasing your T3, due to cost, by re-introducing levo. But, if you can't convert the T4, that's not going to work, is it.
If you want to split your dose of levo, there's absolutely no reason why you shouldn't. Doctors may say you shouldn't, but what do they know?!?
Hi again ❤️Yes I take my thyroid meds with water on an empty stomach I try to leave 2 hours, after dosing with T3.. This is hard tho when splitting the dose in 3 I have an alarm on my phone to make sure I do not take anything after taking my T3... Yes keep vit D away from thyroid meds.. Got all my info on that subject from the great information on her, as on the T3 box it says 30mins before eating or drinking.. Yes I agree with you about the introduction of T4 AGAIN.. trying to get me off T3... As you know from my other posts I do not get on with T4, I'm bearly getting on with T3.. But Ive been increasing slowly to try to get my body use to the increase thought I was doin OK have some hyper symptoms still but hoping they diminish the more T3 I increase now the endo has changed the goal posts again, and I'm apprehensive about remaining on the combo.. I just want to increase the T3, 🤷♀️.. As I've woke with this really bad headache I can only attribute this to the introduction of T4, same as the last time I was on it.. 😠
Are you sure they're hyper symptoms? Because a lot of symptoms can be both hypo and hyper. Having said that, it's not surprising to have both at the same time, because the hormone you're taking isn't divided equally amongst all the cells. Some cells are getting too much, whilst others still aren't getting any at all. This should even itself out with time.
Have you investigated low stomach acid as a reason for your apparent non-absorption of thyroid hormone?
Hi slowdragon ❤️Just seen this post.. Its a strange condition slowdragon, before my total thyroidectomy I had very bad hyper symptoms as one would expect, none detactable TSH, T3 39.5 ,T4 100, I was put on lugis iodine one month before op, to reduce the T3, T4 as the surgeon would not perform the op with my levels, I couldn't wait to have the op as I hated the hyper symptoms, had thyroid removed 8th May 2019,woke up, FANTASTIC!! First thing I noticed was my tremors had gone, I had a full night's sleep without sweating, felt calm.. VERY HAPPY, thought I've cracked it, then of course the medication was given on my discharge T4 at 175mg going off body weight, I took my first dose OK, carried on, until I guess it must have got in to my system, I had an appointment with the surgeon at the hospital I noticed hyper symptoms returning the sweating and tremors and insomnia by the time I saw him I was a wreck he noticed the tremors and profuse sweating and immediately lowered my dose saying I'd gone in to a hyper swing due to the meds being to high, this went on until I was eventually on about 50mg T4 we found out that I was lactose intolerant so they changed me to lactose free but I still felt a total wreck jittery, shaky, insomnia, sweating all noted by my surgeon, then I was put on T3 I could be wrong with the amount but thought the first dose was 125mg T3 teva.. To which I still had hyper symptoms now being discharge from my surgeon and put in the hands of my gp he noted hyper symptoms detecting a fast heartbeat, we both agreed that maby it was best for my body to start slowly with the thyroid meds as I'm not good on synthetic medicine, so we did first 10mg..t3 teva on 10mg my hyper feeling diminished a bit still sweated but not as much, then I was told to increase by 5mg making 15mg slowly I notice the tremor especially when holding a cup or glass, now I'm on 20mg T3 teva, and as I say I have hyper symptoms, but as you say you can have overlapping symptoms when your under medicated so I've continued with the 20mg T3 hoping to increase with my latest blood draw, but after 7 weeks on 20mg my T3 has droped, so hence the doctor contacting the endo for advice, that advice is back on T4 with T3 combo.. My surgery has never mentioned absorbtion problems eventho I have colitis and did have a bad flare up about 3 weeks ago with server runny stools and bad cramping with blood in the stools, I have mentioned this but the only solution,, T4 introduction... 🤷♀️🤷♀️🤷♀️
I have colitis and do have flare ups along with very bad body pain which I'm pretty sure is rumertoid arthritis, my mother had RA.. I have ostio arthritis and ostioporosis, as for the colitis my gp dismissed the findings from the specialist and said I had ibs.. He prescribed buscopan, I have since requested my medical records and the specialist has clearly put diagnosis... Colitis, my gp as offered me no other medication for the bowles or the body pain, I asked if I could have a month on steroids as this is what the gastro put me on in hospital and when I came home, best few months I've ever had best I ever felt, then I had to come off them everything returned as I said gp only gave me buscopan, he would not entertain the month on steroids, I really only want some relief from the pain, and flare ups, also I've had the camera up, and it was inflammation due to flare up of colitis, so you could be right about the T3 being lower, but as I have no indication when these flare ups come on I can't do much, but I'm due to see my gp next week, I'm pretty sure there must be a medication that helps with colitis and pain from ostio, conditions 🤷♀️
Have you tried an elimation diet to try to get to the root cause of the colitis? Colitis is just a general term, and can be used to cover a wide spectrum of gut problems.
I don't know if this would be of any use to you, but in French hospitals, they swear by pureed foods - fruit and vegetables - and soups to heal the gut.
Hi greygooseI really have a very bland diet, which does consist of soup, I find if I have anything like chips or stodgy food it gets stuck in my gullet then I have pain so I eliminated those kind of foods, I have mash potatoes with gravy smashed down, salmon, pate on crackers, white, fish anything I can reduce, or mash down, I do think that medication plays a part in my flare ups, and I have tried to find out why they occur, when I had my last one about 3 weeks ago I went back to see what I'd done differently, had I eaten something no, drank something different no.. But I also think I might have a auto immune problem, as RA is auto immune graves is auto immune ( but have no thyroid now although my thyroid anti bodies were off the scale at the time) so gp has suggested I go through another flare up them try to take bloods, see what comes up... 🤷♀️
HiWell I would say high only because sometime when I burp I get a acid feeling in my throat I had it last night, doesn't burn just like a sicky taste, my gastro put me on omeprazole gastric resistant capsules. But I've since found out they can interfere with thyroid meds so I came off them.. But to be honest I never felt they did anything for me 🤷♀️
Ah, well, that doesn't mean you have high acid. It's more likely to be low, which means that your food is fermenting in your stomach and causing a volcanic effect, with eruptions sending what little acid there is, up into your oesophagus.
Have a read of this article, and try the home test at the end:
Hi greygooseThat was really informative, I have had the camera down the throat twice.. Both times they mentioned h pylori, hope I've spelt that correctly, it's in my records, I think that's why the consultant prescribed the omeprazole although I don't know what this would have done, I have no ulcers, they never mentioned acid or anything like that, said everything was OK apart from the h pylori, 🤷♀️
Hi thanks slowDragon ❤️I'm still going to stay on the T3 path increasing in the next few weeks until I can get to at least 50mg T3.. Before my next blood work) ,I feel changing it as I have under orders from the endo and gp.. Or junior doctor as she is,, as put me back again, as I said woke with a really bad head today and feel like crap😩.. So T3 increase by 5mg until I can get to 50mg..see how I go with that..
Well, there you are, then: low stomach acid. If your acid had been high, it would have killed the H pylori bacteria. And, the H pylori itself is probably the cause of your colitis. But, for some reason, either doctors don't want to admit the existance of low stomach acid, or they really don't know it's a possibility. Trouble is, once you have H pylori, you need to lower the stomach acid for the stomach lining to heal. But omeprazole should only be a temporary measure. It's not good to take it long-term.
Hi greygoose❤️Yes I agree with you on omeprazole that's why I came off it, it really did nothing for me anyway, I told my gp this but went to see him about a new symptom this was a sharp but dull pain that went from my right side In my back through to just above my breast Trully I thought I was having a heart attack, he just told me to up the omeprazol, it didn't work and I continue to have this pain on and off in varying degrees of pain sometimes it makes me vomit, anyway I've just had a scan on my kidneys and upper abdomen, the specialist who performed it said he could see no kidney stones but could see a gal stone, I have now to see my gp about the scan... Could the pain be the gal stone, 🤔 I wonder, watch this space 😄
Thank you for replying to my concerns much appreciated ❤️❤️❤️
It possibly could be the gallstone, yes. Different people seem to experience different types of pain with gallstones. I had them - and had my gallbladder removed - several years ago, but I didn't expirence any pain or other symptoms, at all. You certainly should follow through on that one.
HiStarted on 125mg on lactose free but only lasted a week.. I've been pushed about so much by endos and gps on dosing I've lost count, so when I went back on T3 after Newcastle endo took me off it and put me on T4.. Which I could not stand, the other endo at my hospital put me back on T3..as I said at the top of this page it was 125mg first but I had hyper symptoms so I decided to take charge of my own meds then and both myself and my gp agreed to start lower at 10mg for 6wks, as I said my hyper symptoms were not that bad on 10mg, after the 6wks he told me to increase by 5mg which I did.. Then noticed hyper symptoms creaping in but carried on until I've got to 20mg..as I said I was hoping to increase T3 again slowly hoping hyper symptoms would diminish as the T3 increased, I've been on several doses of T3 and T4 but always when high or going higher hyper symptoms increase, as now on T3 at 20mg..but pushing through hoping hyper symptoms go, so I'm not to happy that the endo has again introduced T4 in to the mix as they did before, it always wrecks any progress I've made on the T3, although as I say I don't particularly like the hyper symptoms I'm willing to push along with the T3, in the hope my body adjusts to it.. 👍
Gosh your dose seems very low and that is reflected in your labs.Your body needs more thyroid hormone!
"I'm wondering why my T3 is only 3 after being on T3 for this amount of time",...you are replacing with this hormone, not topping up what is already there, your dose is too low.
Your TSH reading will reflect your thyroid hormone level
Low hormone/ high TSH ..and the reverse.
The symptoms of overmedication and undermedication can be similar which doesn't make things any easier!
In your shoes I would be increasing T3 not T4...you have no thyroid. T3 is the active hormone required by almost every cell in the body in a regular and adequate dose
T3- only will raise you FT3, mine is well above range. With RTH this is to be expected, without RTH mot advisable.
You say you cannot tolerate Levo....neither could I!
I was prescribed it for over 20 years until I could barely function. I simply trusted that what medics were telling me was accurate, until I knew I that had to take control or keep deteriorating...instinct ( or sheer bloody mindedness) told me there was another way so I'd better start researching before I was unable to do so.
It's all in my profile.
I'm on my high horse currently about the way modern medics diagnose and medicate thyroid disease. They rely on lab numbers and a computer screen and forget there is a living breathing but unwell human sitting beside them. They forget to really look at the patient and often don't even ask, " how do you feel?" They fail to join up the dots/ clues. Good old fashioned clinical evaluation is as rare as hen's teeth and we see the consequences of that on a daily basis here!
20mcg won't even "hit the sides"....as SlowDragon says, on T3-only we need at least 50 - 60 mcg daily. At most I needed a whopping 200mcg but as my system started to "wake up" I now need around 100mcg daily which I take in a single dose at bedtime. My GP freaks out at this because she just doesn't understand....because she has not been taught how to treat hypothyroidism when the patient does not respond to LT4 therapy. The endo I saw ( a diabetic specialist) was a waste of time!
This forum saved me as did a huge amount of reading.
I eventually concluded that I have a type of Thyroid Hormone Resistance (RTH)which requires a large dose of T3 to overcome that resistance. It works for me!
It now looks as if I've had this problem, most probably all my life. I first started to suspect something was wrong in my 20s but medics trotted out the usual platitudes and diagnosed me with Fibromyalgia, Chronic Fatigue Syndrome, IBS, the list goes on. I had loads of scopes, scans and treatments ....some private some NHS.
This lasted until I found this forum aged 70 and discovered there was another way. I first tried T4/T3.....no success! So took my courage in both hands thought, " stuff this", and decided to try the last resort, self medicate with T3-only. I was very cautious and increased probably slower than I might have done but with trial and error and very careful monitoring it began to work. I now function reasonably well, my symptoms are minimal but the damage slowly caused by low T3 over decades cannot be fully resolved at age 75!!
I cannot tell you what to do, I'm not a medic, but I can share my experience and encourage you to look beyond your medics to the work of the late Dr John Lowe, to Paul Robinson et al and for easy to understand and referenced information to Hugh A Hamilton's ebook called, "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" You will find it on Amazon for £3.96 or free if you have Amazon Prime. If you don't have an e-reader then you can download the Amazon version....free if I recall correctly.
I haven't read all the replies here but I see SlowDragon has given you excellent advice I suggest you follow it. Among others here she helped me sort things out.
There, got that of my chest, I hope it helps in some way!
Hi DippyDame❤️Thank you for your reply and it is very informative ❤️ I whole heartelly agree with slowdragon, I think I should keep on adding the T3, I'm not to good on synthetic meds, and T4 was definitely not good for me again my endo as interfered with my results saying I need to add T4, again OK this time using the combo method, but I've come such a long way on the T3 adding 5mg after my blood draws.. Ok I'm having hyper symptoms but as slowdragon says the symptoms of under medication can be the same as over I'm willing to keep on trying the T3.. Hoping it will decrease the hyper symptoms as I get more in my system, I've been on the combo for 5 days I woke up today with the worst headache ever, I have not had a headache with T3.. So can only assume its the T4.. I think I will just up my T3 by 5 again making it 25mg just for the next week to get my system use to it then add another 5mg making 30mg hope fully in the next few weeks I can get to at least 50mg before my next blood draw.. See how my T3 and TSH looks then..
20mcg to 50/60mcg in "a few weeks" is rushing things, I waited about 6 weeks before each increase of a quarter tablet. Are you intending to start by dropping all the levo?
You won't know if T3-only suits you until you try it
Check your heart rate daily and be aware of the start of any tremors on outstretched arms. As you know T3 is a powerful hormone.....take care.
Good luck and be patient, there is no quick fix....but there is a fix!
Hi,, ive been on this lot T3 for about 13 weeks I think or their abouts, slowly increasing from 10mg to 20mg been pushed from pilar to post by gp and endos, this is my second lot I think🤦♀️.. I've only added the T4 in the last 5 days, as I said woke up with a bad headache today, as I did last time on T4, I'm thinking of staying on T3 only and increasing to 25mg now, but even that seems to low a dose, but I just would like to increase slowly to allow my body to adjust to the increase so probably will do as you suggested and go to 25mg for the next 5 weeks see how my bloods look, then go to 30mg just try to keep adding it👍
Time to stop juggling different hormones and different doses but you seem to understand that. Otherwise, you are setting yourself up for failureYou know your body better than anyone!
I suggest you keep a diary recording every change of dose and every symptom change etc then you can track progress....or none.
Hi againI have amazon prime, so I will take your advice on that download ❤️ I have slowly been adding T3 because I showed symptoms of hyper the more I added, that's why I've started lower and increased to get my body use to it, GPS don't care about your health they have pushed me from pillar to post this last 18 months to the point I don't know what I'm doing, that's why I took over my T3 meds saying I would increase slowly I have OK the hyper symptoms are awful, but I'm willing to carry on, I'm not happy that the endo has stuck their nose in again, making me lose control of what I've achieved in this last number of months.. As slowdragon says, increase T3 till I get to 50mg/60mg...sooner take that advice than my endos... Who by the way is also a specialist in diabetes 🤷♀️ go figure.. 😠
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Advice on bloods please.
Advice on latest bloods please
Thyroid bloods if anyone can have a peep?
