Potted history, Graves twice, surgery and RAI, doing ok on Levo for 10 years or so, possible parathyroid problem, abnormal liver results. Current thyroid levels really good but not feeling 100%
I saw my private endo today and she suggested trying T4/T3 combo for 3 months to see if it makes any difference. I will have to stay with the private endo for monitoring but going to see if GP will prescribe the T3, I very much doubt she will so can anyone give me the rough costs of T3 on a private px ? I can get them a bit cheaper as my sister is a Pharmacist but would like a ball park figure to start with.
Thanks
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bantam12
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Thats not too bad for a 3 month trial but long term a bit pricey, I don't think I would feel comfortable buying from abroad so need to think about it before going ahead.
I'm not sure about the trial, my endo said she has only had 1 patient do well on it, all others have chosen to go back on Levo.
Do bear in mind that some people need more than one tablet a day. So the £52.46 a month rises to 104.92, 157.38, 209.84...
If I were you I would ask precisely why the others "chose" to go back onto straight levothyroxine. Could be due to the lack of information and support they received - simply getting a prescription for T3 and starting to take it every day might not have been sufficient. We have seen all sorts of approaches to taking T3 - morning, bed-time, one dose, split doses, and so on. Perhaps those actually taking T3 would be able to provide some more information?
Although many people do well on T4 only I also wonder how endos approach giving T3.
When I first took T3 with T4, my T4 was reduced and T3 introduced. I felt much better for a week or so then felt awful, truly awful. If I had gone back to the endo I saw (who was sceptical about T3) I would have been put back on T4 only and told T3 didn't work.
However my first week of it made me go to see Dr Skinner and explore T3 more (I am now on T3 only and much improved from T4 only).
I have a theory why I felt worse and why other also may feel this way. The T3 was being used mainly by my brain (which is where I found a big improvement in the first week). So this means that when I was on T4 only the T4 wasn't being used much in my brain, it was being used by my body. When my T4 was reduced, to introduce T3, my body was getting less T4 and so it felt worse (after a week because of it's long half life).
I felt better again once my T3 was increased, so I had enough of it to replace the T4 I'd reduced AND some to go to my brain where I desperately needed it.
So many endos have told me negative things about T3. But do they ever listen to the patient and think about what's happening in their body? When a patient doesn't do well on a reduced dose of T4 and an increase of T3 do they think... Let's try two weeks of another increase in T3 and if that doesn't work THEN go back to T4 only.
As your sister is a pharmacist can she order a private prescription from abroad? Because it's so cheap in many other European countries. It's made by companies in the EU and must pass any EU regulations.
Just a thought. Good luck for your trial and any further treatment whatever you choose.
My GP prescribes T3 for me. I had a private prescription from a private endo initially and asked if my practice would pay for future prescriptions You may be lucky with your GP too. I am now on three tablets a day but do not take Levo. I am wondering how long my GP will continue with this but fingers crossed and I hope yours is as compliant!
Hi I have always had T3 from GP, recommended from my Private Endo, also my TSH is so low immeasurable. Be sure to take a copy of the letter to the GP with you, ask for it to be e mailed to you if little time. Often the letter arrive very quickly and it will be clearly put in there. I have a very difficult GP!
Hi! I have also got a variety of GP's who can be 'tricky' when asking for things! However, if you print out some of the best bits of advice from here, plus a copy of your Endo's suggestions and take them with you I would like to think they will prescribe them for you. (It may help if you 'mention' that you have been told how to obtain them from abroad, but that it worries you - they wouldn't like you to be 'at risk from foreign imports!) I have been so much better since having a mix of T4 & T3 - and find that our own GP's know so little that if you present them with decent research material, giving some proper reference guides, and let them know you are a member of these sites, they are likely to listen. In my case it did take two different Doctors and a waiting game of 'normal - in range' blood results (however low in the range they were!) that I managed to convince them that blood tests are not the full story and I felt crap - Brain Fog being the most difficult to identify and value from bloods, that they 'let me have a go' with T3. I have gradually had more over a year or so, to the point this month when a kindly Lady doctor actually told me she doesn't agree with only looking at the numbers, that the patient was the best guide, and added a T3 - 5mcg - 'as required' to my repeats, allowing me to try and see what works for me. I had a theory, from reading stuff on here and my own situation, that it might be a plan to take a small dose of T3 at teatime, to see if it stopped my energy crashes in the afternoon. I could make it two tabs after a few weeks if I felt like it, but assured them how sensible I would be. My argument against their reluctance on the 'heart strain' any over-medication could cause if I got it wrong, was that being so overweight and not energetic or 'with it' enough to exercise kept me so overweight that this would put even more strain on my heart, so surely it was worth a try! I too have no thyroid, (RTT) so qualify for free meds - I really don't think you should be buying them - it's their duty to provide and care for you properly, so don't be afraid to make your request! Hope this helps, and that you get to feel better soon. (P.S. - not sure if the tea-time top up regime works, because I am a bit hopeless at remembering to take it - too foggy! Haha! So I have now just added the 5mcg to my morning dose, have done for the last 4 days, and seem to be a bit more with it, so maybe I am winning!) Good Luck.
Incidentally - I still feel that if you have NO Thyroid (mine is RTT'd dead) then you probably need more replacement than if you are just underactive. Can anyone confirm this - and I know all are different, but I am on 75 Levo(T4) and 20 Lio(T3) plus the new 5-T3 that I am 'playing' with. At 58, past menopause and in the Obese section of larger ladies, does anyone know what the average 'normal' requirement is for replacement Throxine? I feel compared to other reports this is still pretty low dosage, which is why I have been pushing for more. I certainly feel better with the combination therapy. Also - have you had all your Vits/Minerals checked - my B12, Vit D & C, and Folic acid were all well below acceptable, so I have had a course of those over the summer too.
Hmmmm My consultant has agreeded to try me on a 'low' dose of T3.....looks like I might have trouble getting it......my doctor is dificult at the best of times.
Your story interested me due to the fact you mentioned the parathyroids......I have genetic hypoparathyroidism........where as yours sounds as if it's due to surgery.
What intrigued me was the liver results ! I am also being investigeted for liver problems.
So far it seems I have a fatty liver i'm still awaiting the many blood results.....my inflamation levels in the blood are rather high.
I may have hyperparathyroid disease as my calcium is just over the range, previous pth result was high end of normal, stupid lab didn't do it this time so need another test. Having had both surgery ( in my teens) and RAI in my 40's is most likely the cause. The liver function has been abnormal for more than 5 years, ALP being amongst one of the highest and now GGT is way over ( I never drink alcohol ). I have had scans, MRI and liver biopsy but nothing abnormal found other than very slightly narrowed small ducts. Inflammation levels have always been normal despite having ulcerative colitis all my life. My Gastro Con is not worried by my levels (hmm I'm not happy !) as they haven't managed to find a cause, I'm having another scan this week but not expecting anything to show.
I have been showing slightly high inflamation levels for some time together with cronic lethargy & my body over heating.
I have an under active thyroid that went from over to now under.
It was at a later date that i was diagnosed with the para problem due to my persitance something was wrong......if your calcium is low it sounds as if you could have para problems so DONT be fobbed.off, the low Vit D is also a pointer to para problems.
I shall be seeing my gastro on the 22nd of next month for my full liver results.....everyting is so long winded & all the time your feeling very unwell.
The scan showed a fatty liver.... but they were looking for things like hepatitis but like you I do not drink.
My appettite has gone crazy with me never feeling full.....the wieght is galloping on. With the lethargy I cant burn it off anymore.......I also suffer with fibro myalgia......ho joy.
Life is a bitch at the moment not knowing wich way to turn, sometimes i am so lathargic i'm house bound.
Can I ask if you get stomach bloates ?.......mine is so uncomfortable, I dont eat gluten due to sensitivity but still I bloat out.
O to feel normal what ever normal is I feel as if i'm looking out on life through a daze.
I was repeatedly told I were boarderline even though I had all the symptoms. It was St Marys in London who eventually diagnosed me many years ago. I was given RAI I can still remember them all those years ago bringing it up in a metal box.
At a later date I was diagnosed with Hypoparathyroidism but my case was not surgically induced my son has it too. I have other autoimmune disease sjogrens / lupus, Aps on top of other ailments which makes it difficult to know what is doing what.
But the overheating is nothing other than a misery.
I can remember when hyper being very hot and sweating profusely from under my arms. Since being hypo things are much worse and now dread the summer months - fans ans coolers are at the ready.
I suffer with other autoimmune diseases which make it hard to know what is doing what such as sjogrens / lupus, Aps and other various ailments. I no longer sweat from under the arms and can only put this down to my poor gland function and sjogrens. It is a misery waking in the mornings exhausted before the day has began
in a wet soggy mess. I'm afraid I have found nothing that helps other than keeping wet wipes and cooling sprays in the fridge.
I have even considered putting aircon in !
I am on T3 If I am honest I am not sure if it helps or not . My surgery tried to stop prescribing due to cost but my endo stuck his neck out in my favour and insisted they carried on prescribing. I take 150cg levo because my endo likes to keep me slightly over medicated.
I have stayed hypo now for many years but I could do with a spell of hyper to lose some weight.
I do feel for you because I know only to well what a misery this is to live with. To wake up even on the cooler days exhausted and a dripping mess is difficult to endure on a daily basis. Make sure they keep a close eye on your antibodies to ensure nothing else is going.
How I wish I had something positive to help you but I am struggling to the same as you. Perhaps we need to have a new thermostat installed. Big hugs. Xx
Hi Jillymo, thank you so much for sharing your experience. It is enlightening and gives me some clues as to what to do next. Thank you! God bless you : )
I've been reading through your posts and you amaze me with your strength and resilience. Please continue to share with us.
I'm just not sure about starting T3, I do have low VitD which is ongoing, I can only take small amounts of supplement as my calcium is high. I also have abnormal liver function which has been like it for 5+years, nothing found on biopsy, mild microvascular angina, possible high BP and possible parathyroid disease, so a few issues to think about before embarking on a treatment that I may not really need. I had partial thyroid surgery then RAI many years later and she thinks that may be why I am not 100% on Levo although I am not far off. She is really not convinced the T3 will do anything for me but she is happy for me to try by adding a tiny amount along with the Levo as long as I don't go out of range on results.
I need to see the GP about prescribing the T3 before the Endo writes the letter because she needs new pth and calcium blood results as that will determine if para disease is the problem or not. My GP refused to prescribe me an unlicensed VitD which the Endo asked for so I'm not hopeful she will prescribe T3.
It's all getting rather complicated and right now it seems easier to just stick with Levo.
By the way my latest results are TSH 0.3 (0.30-5.50)-- T4 18 (<22) -- T3 4.1 (3.9-6.8) does it look like adding T3 would be any use ? my T3 was 4.8 2 months ago so has dropped since lowering my Levo dose 3 months ago.
If you know anyone in either Greece or France they will be able to get it for you over the counter (no need for prescription) at just a few Euros (Greece- less than 2 Euros). Only in this bloody country are the pharmaceutical companies able to get away with charging way over the odds... I presume that's because they have been allowed a monopoly and being able to take advantage of an NHS which is too big to check up on this kind of greed...
I can get my T3 for about £30.00 for 100 25mg Cynomel tablets (not from the Uk though, Delivery is aprox 2 weeks).
As you were OK on T4 for so long, have they suggested checking for Adrenal Fatigue? Not by using the standard test ACTH (Synacthen test) as this only shows up if you have Addisons Disease.
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I feel as if i'm looking out on life through a daze.
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