I started T3 add to my Levo beginning of December last year ,The 1st few months were amazing with energy I had before taking Levo but since then it seems to be not so affective and I keep having to have naps,
The pain I had all over my body is not so bad but energy levels have dropped too much
I have also started to put more weight on.
Is it that it can stop working ? maybe I need more, on 100mgs Levo 20 mgs T3
I have an Endo appointment next week and i don't want to say its stopped working as am benefiting from not having Fibro pains so would be really sad if he stopped it.
has this happened to anyone else if so what did your Endocrinologist do about it, I cant see them upping it due to cost but any help will be appreciated on this Thank you
, I have the faulty Dio1 gene heterozygous and I have MFTHA faulty genes .
Does anyone know what other faulty genes may affect my thyroid or Levo absorbing? as I have had my 23andme results back, but not sure what to look for so help on this also thank you
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Sorry I don't have ranges as hospital didn't give them to me, but I have had 2 lots of bloods since i had 20mgs T3 added and levo reduced from 150mgs to 100mgs
1st. ones where i felt brilliant loads of energy but took after 10 days, which i was supposed to do at ten weeks , i was bit brain fogged at time
TSH -- 0.004
T4 --12
T3--5.9
nails started to grow when i was 1st on T3 but stopped after 3 weeks into T3 being taken
Then these done 10 weeks s advised
TSH- 0.004
T4 12
T3 4.9
My TSH has been like this for ages before T3 It was even like that when my T4 was 15 on Levothyroxine and i was in a deep sleep for a week till they upped my levo
When given these they said they were all ok and within range .so def not over any ranges, I cant get his secretary back on phone she doesnt reply tp my phone calls or emails, so cant get ranges till thursday .as GPs receptionist cant get them on her screen and dont want to go to an appointment to get them
Now feel tired having to go back to bed a lot twice a day, early nights again I , carpel tunnel. heart burn just started to come back which I had for years before adding T3, hair is a bit dry needed to buy Expensive extra strong conditioner, My finger tips have got back the hard skin i had before T3 skin isn't good, but then it hasn't been since thyroidectomy. shooting pains in veins in arms feels a bit like flu if you understand what i mean
I have started getting migraines again frequently, which had before taking T3, keep getting pins and needles back in my left calf, think that might be part of my sciatica but not sure.but that has also been acting up again
I take Vit, D was 95 Range 50- 200 was on Adcal D 1500mgs, still on them ,,
selenium 100-200mgs
omega 3 fish oil
magnesium citrate
my ferritin was 53 so was in range 10-204
my B12 was 287 so i took B12 supplement and my active B12 shot up well over range told to reduce, as wasnt taking high dose i stopped, I wonder if MFTHA gene has something to do with that
Thyrogobulin antibodies <10 range 0.00-115.00
Thyroid Peroxdase 9 range 0.00-114.00
I had sub thyroidectomy in the 80s for hyperthyroid I think this is why i have hypothyroid now
It's not possible to compare your thyroid results really, the first one was done too soon and you would still have some of the extra 50mcg T4 in your system and there may have been some T4 to T3 conversion which would give the higher FT3.
I have found through tweaking my own Levo and T3 that although my conversion was poor, there was still enough to make some difference to my FT3 result.
Does the hospital write to you with the results or tell you when you are there? I would ask them to include the ranges in future so that you can see yourself how far through the ranges you are, it's important that you understand your results so that you can ask for an increase if you feel you need it and explain why.
If both those FT3 results are in range then it's likely that the range is the same as Medichecks and Blue Horizon ie 3.1-6.8 or very similar. If that is the case then your FT3 at 4.9 may only be half way through the range and you may be like me, you need your FT3 nearer the top end of range. If so then the low FT3 will be causing symptoms.
I think you should point out to your endo all the symptoms that have come back and that you felt better when your FT3 was higher and ask for an increase. If an increase is refused, ask why. If the answer is evasive, ask if it's because of cost. You could always say you could self source extra T3 and would the endo be happy with that. (If he says yes then it would be so wrong to deny you the extra on prescription!)
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Your Vit D is almost at the recommended level, which is 100-150nmol/L according to the Vit D Council.
Was your calcium level checked and found to be low?
Are you taking D3's important cofactors magnesium and Vit K2-mk7. D3 aids absorption of calcium from food and calcium level would normally increase when taking D3, and K2-mk7 is needed to direct the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems. You will have to buy the cofactors yourself, doctors aren't taught nutrition so don't know about them.
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Ferritin level of 53 is too low. It needs to be at least 70 for thyroid hormone to work (preferably half way through range) and this could possibly be part of your problem. Eating liver regularly, maximum 200g per week, will help raise your level.
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I would take a maintenance dose of B12, I haven't done an Active B12 test yet but my serum B12 got up to about 1500 so now I just supplement a couple of days a week.
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Your antibodies are nice and low and don't indicate autoimmune thyroid disease aka Hashimoto's.
Thank you so much for all this its much appreciated The Vit D I am on is D3 with calcium 400 in it ,
I never had any checks on Vit D or calcium or any other Vitamin tests when I was put on it years ago, ( nor much else come to think of it I was put on 50mgs Levo and left and don't think ever tested again as he said that tablet would make me better but it never did, everything else blamed the usual story !
I now realise that GP was not at all good for my health he was ignorant on thyroid and didn't have a clue in general ! Im so glad i don't have to rely on him anymore and I have better GPs here but not 100% but at least referred me to am Endo which was a step forward , I told that GP I had taken some of my mothers Adcal D3 and it helped my nails better he prescribed it to me on that basis
Liver I can do so will have that weekly a big portion
Please could you tell me where would I get vitamin K2-mk7 from ? as not heard of that nor come across any anywhere, Have a website address please as we dont have a good health shop anywhere close to me .
As Im going to Hospital Thursday I will ask if the will send me blood test results and ranges in future I got them on the phone some Temp who wouldn't give them to me for some reason weird she gave results but said they were normal , I will also ask what the ranges are from last 2 tests
Many Thanks SeasideSusie thank god for you and others on this site as if I relied on the GPs i would be left really unwell
I really think you should ask your GP to check your calcium level, explain that you have been prescribed the Adcal without knowing if you actually need the calcium.
I try to use supplements with as few excipients/fillers as possible. I take Healthy Origins K2-mk7 as it only has the K2 plus organic extra virgin olive oil in a softgel
It's fat soluble so, like D3, should be taken with a fatty meal but the olive oil means that there is already some fat to aid absorption. I take mine with a full fat yogurt.
How much D3 is in your supplement? With a current level of 95 you don't need a high dose, more like a maintenance dose so 2000iu daily might be enough.
Do you take your supplements at least 2 hours away from your thyroid meds? D3 should be taken 4 hours away, as should magnesium. Also, when you have meal of liver, that's probably best 4 hours away from thyroid meds as it's a good source of iron.
I've got a go appointment Wednesday so will tell her, she's a brilliant GP she was going to prescribe me T3 when they went and banned it whilst having bloods done, she seems clued up, I will say all you have said , my old Gp was a complete idiot then I've been on that about 7 years now . My last GP said when I told him I was on them he replied all shocked they only give them to cancer patients ( my mum had cancer ) anyway he never said anything or tested me for it .
The box says Calcium carbonate and Vit D 3
Sorry read dose wrong it says
each chewable tablet contains 1500mgs calcium carbonate (equivalent to 600mg calcium) and 400 iU colecalciferol
( equivalent to 10micrograms of vitamin D3 it also contains soya oil and such sucrose.
Take 1 twice a day Whops was taking 2 at same time.
Should I stop these , what happens taking this stuff when you don't have a need ?
I have taken these at night time since I found healthunlocked as before I would take everything when I woke up, I now take T4 at 4am T3 at 8am selenium about 12 T 3 about 2-3 HRT around 5Pm or when go to bed and this D3 as I'm going to bed with sleeping tablets and hot chocolate with marshmallows on it and maybe bar of chocolate
So you are taking 2 of those D3/calcium tablets a day. A total of 800iu D3 and the equivalent of 1200mg calcium. That is a small amount of D3 (less than most people's maintenance dose) but a whopping amount of calcium for someone who hasn't been tested.
Plus, if you aren't taking K2-mk7 then there is a real chance that the calcium can be deposited in soft tissue and arteries and could result in kidney stones, calcification of arteries and calcium deposits elsewhere.
You really do need your calcium levels testing and personally I would stop taking them until you have the result.
"My last GP said when I told him I was on them he replied all shocked they only give them to cancer patients ( my mum had cancer ) anyway he never said anything or tested me for it."
That is quite shocking. Why on earth did he continue to prescribe it?
Thanks SusieSeaside, I will stop them straight away I have some vit D 3000 somewhere I will take one every other day,
I don't know why he continued that drug without testing I didn't know I thought they were just Vit D3 tablets ,
WHat should I ask the GP to change them for ? ? ? as may as well get them on prescription whilst I can
Their is definitely some scary GPS out there that's one thing I've found out. This is the same GP who put me on HRT 2 years ago for all my hypo symptoms when I had stopped my periods when I 1started Levothyroxine 13-years ago when I was about 40 yrs old and gone through all the sweats not only that it was horse urine one I later found out which I don't think is that healthy for anyone it got withdrawn from market a years after I had been on it. , Sweating wasn't one of my symptoms but all were hypothyroid ones and he never even checked my thyroid levels and at the time
I was still on the starting dose of 50 msg so you can imagine how bad I was feeling, I upped it myself eventually to see if I felt better which helped , the Endo said I shouldn't of gone on HRT after 45 yrs as it had all finished by then, that Gp has left my surgery now
, not got that much faith in the one thats replaced him as he tried to blame my pains on fibromyalgia that's when I reasearched and found this excellent site ,
but I did find that GP at our sister surgery , she's a gynaecologist and seems a little more savvy than any go I've seen in the past, so will ask her if she can be my GP in future as that's the one who was going to prescribe T3 before the ban, so I know she's good with thyroid..
my own GP had a little panic when he saw the results on T3 he was like umm you r T4 was 16 umm then 22 um um and I could see the panic on his face, so obviously he hasn't got a clue I was smiling to myself at that point lol
ANd he won't have that my carpel tunnel could be low thyroid or that it is I need B12 which would not show low it could be my MFHTA gene fault in balancing my folate ! he sent me for carpel tunnel examination, which is ok but was not a pleasant Experiance , but doesn't the route that caused it need to be addressed , I am not having no painful op so he can go jump on that one .
My Ex man was a cancer surgeon consultant , I remember him saying way back that GP s were lazy failed DRs the ones the hospitals wouldn't employ or those who they just wanted the title of Dr to say look I'm a Dr. I am god .
so it appears he was not lying on that on that was he ? I didn't really take much notice at the time but turns out his description for most was spot on .
Anyway thanks SusieSeaside I will bring this up at appointment Wednesday to the GP I trust x
P.s what a lovely day it is today it makes the mood much lighter and better x
If your GP is willing to prescribe then unless you have a need for calcium - and make sure that is tested - then you just need D3 only.
I would be gobsmacked if any GP actually prescribed with a level of 95nmol/L, they're more likely to say you don't need to supplement. To be honest a good quality D3 supplement is cheap and most likely better than anything your GP can prescribe. You won't get K2-mk7 prescribed so will have to buy that yourself.
and no change in Levo i only take Merrcury pharma, they did give me morning side T3 but came up all in a rash so have mercury pharma T3 still, i refuse to have Teva after the Teva T4 caused me a million problems, i will not trust to take Teva ever again in my life ! supplements all same as before nothing new, but maybe a few drugs dropped as didnt have a need for them any more but stopped them 1st day having T3
i feel pretty useless till i have my morning dose, I also get a head ache( migraine where i have to lay on bed with lights off ) from about 6pm and get woken up in the night with headaches and heart is thumping
I have found taking T3 in split dose, including taking last dose at bedtime, was more effective. (5mcg x 3 - waking, mid afternoon and bedtime). Previously was taking just morning and late afternoon.
I take Levothyroxine at bedtime as I find that much more effective than taking in morning. Been doing that for years.
Like you, initially found result of adding T3 (only 2 x 5mcg) was more spectacular than now, but I am doing far more physically now than I could before starting T3. Definite improvement taking small dose at bedtime
Recently reduced T3 from 20mcg to 15mcg to see if that is better. Possibly it is. Just waiting to retest.
I don't know if I could last till bed time without it it seems to only last about 4 hrs on me I suddenly get really tired and have to sleep I take that in 2 10mgs doses so I have a non energetic time waiting to take 2nd dose at 3pm , I take my Vit D at that time ive tried to do it earlier but forget to take it and like a hot chocolate so wouldn't be able to have T3 or Levo late, I take my T4 at 4 am as always seem to be awake then and is probably the most empty my stomach will ever be, I take T3 at 8am and 3pm longer if Im asleep longer
I too can do more now I have T3 but some days i get frustrated as it doesn't seem to kick in and it seems like a wasted day to me, but at least not every day is like that like it used to be, so maybe I should be grateful I have some days active but they should make us back to feeling as near normal as possible,
I may try taking a quarter 3pm then one an hour before my Vit D ,
omg its all a pain in the bum, wouldn't it be good to just be normal again rather than all these tablets and all these different times I also have to remember to fit my HRT into all this which I should never have been put on but scared to come off it
A doctor who was also a scientist took 150mcg of T3 daily himself, and also his thyroid hormone resistant patients. He said that T3 has to saturate our T3 receptor cells and then the work of that one dose lasted between one to three days. I know some prefer to split doses but I don't. I take one dose and have no clinical symptoms and feel well. This is a link of an archived site and Dr Lowe was also a scientist and researcher.
I suspect you need to up your dose. Think back to when you started on Levo. Didn't it feel great as it started to build up in your body? But then it plateaued out before your next dose increase and yes you appreciated the increase and may be the feel good factor last a day or two more. I think you may well be experiencing this again with yourcT3 added.
Before your appointment write down all your pluses then you can say I still don't feel like the finished article though it has made a huge difference or something along those lines. Will he have some new blood results to show you or will he do bloods when you see him? Mine sends me out with a blood order form each visit and I get it done a week before my next appointment so we are always up to date at my appointment.
I didn't really have Hypo symptoms till I started Levothyroxine, I had sub thyroidectomy in the 80s for hyperactive anyway blood tests through out those years came up normal but guess they did TSH only, My hair skin was bad for years but I was very skinny then and was still I started Levothyroxine,
THe only reason he put me on Levo as I was struggling to stay awake I think I slept for about 2 weeks solidly then dragged myself to Gp who took bloods My hair was thin and he probably only tested it as says on notes to be tested yearly, anyway who told me I was only just borderline hypo he gave me a dose of 50mgs and that. Actually stopped me sleeping . But other than the sleeping I didn't ache or have many hypo symptoms, I may have struggled with energy levels for years and compensated by sleeping longer before I would do anything and after doing things, but didn't really think it was thyroid, I couldn't have kids so guess I may have been hypo for years
, I never got retested till about 2 years ago (I have been hypo for 13 yrs or more now ) anyway was so called border line again, I had upped my own dose to 100 msg And had another 2 increases since as a while back as felt sleepy again and just thought I will just up it , but to be honest all my problems started after I took that 1st 50mgs of Levothyroxine the aching started the hair got thinner I put on a ton of weight which wasn't like me as was only a size eight before starting that , I put on about 3 stone, size 16-18 it was horrid I don't come from a heavy family they are all slim
if I did have bloods they came back so called normal. GP told me to diet and exercise more, anti depressants I was made to feel like I was wasting his time I got that look oh no not you again so got embarrassed keep going in the end ,I have dogs so I was as active as could be ,
I was Given Alli a slimming drug that gives you the runs it's more about educating yourself not to eat fat and as I never ate much fat nothing happened, he told me I was couple kgs short of having proper slimming tablets , told eat less I was on a diet eating hardly anything but getting fatter , I can't believe he sent me for counciling then a phschiatrist who were trying to pity me on anti depressants which I kept refusing I wasn't depressed I just wanted to feel well , never once did he tell me it was my thyroid, I don't think I'm alone on the way I was treated, I even started hearing things and I was just made to feel like I was a pest ,
I didn't have computer then so didn't know it was my thyroid, and I had believed him when he told me that one pill will cure it, he never mentioned more bloods yearly and that to go back if I didn't feel right ignorant b****d he told me it was my age and should just accept it, anyway so know I don't remember feeling good on levothyroxine so I don't have that memory sorry it was all down hill since I was diagnosed and put on that crap.
I reallyndo not feel Levothyroxine is for me as it only ever stopped me from being asleep 24/7 it seems all my troubles have been caused from it, I've got faulty gene, maybe there is more why it never works on me I suppose it will come out in research one day, but I was bedbound on that alone and never had an ounce of energy on that drug that suits all! I was exsisting on it and that's no life to live,
But on the next bit yes will definitely do the pros on it and the bits it's stopped working on brilliant idea,
this is my 1st follow up appointment as only got prescribed it in December last year so this appointment is a little later than 3 months, but my GP now prescribes the T3 he did after the 1st month,
I don't know if he will up dose or not, I was lucky he prescribed it the way everything is at the moment with some not getting it or getting it taken away,
So this was my trial of it so hopping to keep it and get more and thanks for the good tips
I may ask him his views on NDT but won't hold breath on that one. XX
Gosh what a troubled time you have had! Plus I can imagine the isolation you must have felt and I suppose still feeling. I'm glad you found some positives from. Y spiel but as an outsider it's often difficult as not knowing you personally. I'm not surprised with the one little pill being the answer. I think many doctors think that orcits their cover up of not knowing where to go next. I was lucky in many ways when I first started out as my now late husband was an endocrinologist though sciences based though he did lecture to medical students plus it was his research topic as well and also my then GP had just been diagnosed as well but that utopia didn't last long! I've learned such a lot since I joined this forum plus it's also empowered me to speak out more! But keep with us and keep asking questions and reading others posts and the answers. I realised I was being given many suggestions so I tried to put them in order of possibilities and give a three month trial to find what worked for me. You certainly are having an interest journey though at the moment it's not being too produce but try to look at it as your own trial and then evaluate any positive. Try to keep eating though when you are aiming to lose weight. If our bodies doesn't think we are eating enough it hands on to all the calories it can as it's freighted they may be taken away! I do hope you can keep your T3.
Get your Vit D, B12, folate and ferritin tested and post for advice when you get your results. They make such a difference as our thyroid needs them to work better and keep a diary of results etc so you can look back and see what works and what didn't. It also will help you to listen to your body. It often tried to help us but it's not always easy to pick on on it.
Let us know how you get on, get your results and post for advice if you wish. T3 should work better if Vits etc are optimal though that's not an overnight success, it may take time.
Thank you Im sure I will get on top of it as learning more each day, problem is sometimes I forget it as quick as I learn it with brain foggy days, but with T3 its much better than before I had it
I also have that Dio2 faulty gene so I may hang on to the little bit of T3 I have got, if Endo won't prescribe me more I will go the self medicating way just to try to see if just taking T3 is the answer, and if it isn't at least I have some clear days on what im taking now,
Thank you for your kind help I will let you know what the Endo has to say on Thursday if he doesnt prescribe more I think it will be because his hands are tied with the price being so high, but if thats the case I will ask if he will support me if i buy the rest myself
having B12 checked again and a lotst of other tests but haven't been given the blood form it is sent electronically to Blood testing dept.
as last NHS B12 was within range at 398 range 187 - 883
she said tell the Endo on what has helped on T3 and what has returned he will probably adjust your meds.
She was the only Gp i had seen in last 13-4 years that went to prescribe but got banned so she referred me to the Endo, I told her my own GP looked a bit miffed at these results and if I should get any other symptoms or need bloods checked can I go to her as she is the only one in a million GP that understands thyroid disease,
Although she wasnt vey impressed on genetics, so no closer on genetic mutations a non believer in that area.. but to get one who understands thyroid is a bonus .
I gave her a little box of chocolates to say thanks for being the 1st GP to listen to me and my symptoms and not to have labeled me with everything other than my thyroid. she looked really pleased she had helped me get better
she is also doing sex hormones and said if my testosterone is still low we may try adding a little bit of testosterone if i was happy to do that, TBH I have read about it, but not known any female to have Testosterone added I may write that on another post or people may miss it Thanks all for all you very expert help.. tomorrow the Endo,,
I have got 10mgs T3 added today and no decrease in Levo so happier I was feeling under medicated so will have to see how get on , he wasnt all up for the all T3, but go back in 3 months with new bloods to see how I get on, so it wasnt a wasted journey...
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I've been on that about 7 years now . My last GP said when I told him I was on them he replied all shocked they only give them to cancer patients ( my mum had cancer ) anyway he never said anything or tested me for it .
Got my T3 today and am unsure....
Suppressed TSH, on T3 trial
Life on T3 is better
T3 only not working
