Is anyone getting prescriptions for Liothyronine via NHS?
I read (below) on the thyroidtrust.org that NHS said prescriptions for NHS now ok but my pharmacist said it is still blacklisted.
I also need the name of a sympathetic endocrinologist in Blackpool/Lancashire area if anyone can help?
FROM THYROYDTRUST.ORG:-
NHS position on liothyronine prescribing
On 9th July 2021 NHS England wrote to the Thyroid Trust, to confirm that they and NHS Clinical Commissioners expect local health authorities to allow prescribing of liothyronine in line with the national guidance - which includes cases where levothyroxine alone has failed to resolve symptoms of hypothyroidism. They have reassured us that they are now writing to all local Clinical Commissioning Groups to reinforce this expectation.
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spikyjules
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Hi, thanks for getting back to me. A further look at the thyroidtrust.org revealed that just over half of local health authorities are still refusing to presribe and unfortunately mine is one of those - despite NHS England saying they should. It is the old post code lottery. I'm going go and see an endocrinologist for confirmation I need it (though I've taken it for 25 years) then try to push it.
Tell Endo you've been taking it for 25 years and want to continue. I know it is now horrendously expensive in the UK so he/she may not want to prescribe.
Thanks for all the information, so useful. I buy from Mexico at the moment (one a year) I think that works out at £35 - £40 a month so private would be Ok but does the £50 include prescription and tablets?
I also purchase from Mexico but am preparing for a potential supply issue; my sister has just returned from a holiday where I usually take advantage of a top-up purchase, but it proved impossible to get cytomel 25mcg this time around, all she managed were 10mcg (another brand) and was a lot more expensive. A number of pharmacists reported ‘cytomel no longer available’ though it’s still showing as available on the site I useLike you I normally buy annually.
I ordered last March and due to order this March. It took 2 months for meds to arrive . I don't want to order to early as use by dates are usually only a year.
There are severe issues concerned with the prescribing of T3. Firstly T3 has to be trialled under the supervision of an NHS Endo for three months. Then, if it is thought necessary, a doctor will be requested to prescribe. Whether a doctor will / can do so depends on the CCG. Many, but by no means all, have become more willing to allow NHS prescribing. Then, of course, there’s the final hoop. Is the GP Practice willing to prescribe, given the limitations of the practice budgets?
Thanks, are you from the Morcambe Bay area? Do you have any information/advice about endocrinologista (private or NHS? I am Cleveleys area. Have you managed to do all of the above?
I’m not actually from that area. I have achieved jumping through all the hoops in my home county. I had a TT for thyroid cancer and they’re a bit sympathetic. There’s a strong case for all people who’ve had a TT having T3 as they can’t be well without it.
It seems carrying medical scars is more sympathetically seen, than those of us who have been treated with RAI for Graves Disease.
Having drunk this toxic substance, we seem to be at the bottom of the barrel for any help and don't even get any hospital follow up once nuked :
It seems to me there is no benefit to the patient having RAI treatment - it's purely just a quick fix.
A financially driven option promoted by the hospital who are economical with the facts - as why would anybody choose to drink a toxic substance believing it solved the problem of an auto immune disease, if they were told the truth.
It just a toss up, and those patients left with any long term consequences, dismissed as the % fall out, and with no acknowledgement or help forthcoming from the NHS.
Im afraid a scar doesnt always make for a better understanding doctor, it certainly hasnt helped me. Having a scar has not helped me getter better treatment, refused T3 twice and levo dose is dictated by tsh so even thats rubbish. Im sorting this myself and you are one of the kind people who have pointed me in the right direction - thank you. Ive a way to go yet as I have sort iron but Im optimistic and thats huge given that Id given up on the the thought of ever getting well. In decades of ill health practically every doctor has told me the same rubbish that so many of us get told, everything from dismissive to down right nasty bullying on more than one occasion.
I was given a diagnosis of m.e/cfs many years ago and which given what I know now Im certain its always been thyroid.
For many years previous to TT I had a very large and very obvious goitre, with disabling symptoms but still it couldnt be hypo, this along side it being in my family. . They only removed my thyroid once I had breathing problems and couldnt eat solid food. The breathing problem was due to the goitre having grown down into my chest, Id been out of breath for years and despite several visits to gp I was ignored and told I couldnt breath properly because I was over weight. The ct images were shocking, never once did my gp do more than say “ lose weight” and most times he barely looked up from his desk.
It felt like Id entered crazy town, given the state of me.
The first my thyroid was ever mentioned as being the source of ill health was after my TT and that was purely by accident. A follow up appointment with a different doctor explained just how sick my thyroid was and that I have Hashimotos, he remarked “ you must of felt so unwell and that it must of been for years given how big my thyroid was”. Words failed me that day.
I lost my parathyroids as consequence of TT so have permanent hypoparathyroidism, very unwell for quite so time, not good dealing with both thyroid and that too. Thankfully Im pretty good in that respect now but that only came after I went looking for a better doctor and I had to get pretty assertive to get there. Ironically though the parathyroid doctor was treating my thyroid for some time but hes not good to say the least so I no longer see him in that respect.
I’ll stop there I dont want to sound like “ poor me”, not my intention so many of us unfortunately have similar bad experiences just showing having a scar has made no difference to how Im treat.
No apology needed, I never thought for a moment you were being facetious, I probably worded myself wrong too . I was barely out of my teens when I got ill, Im now mid fifties, 35 years of mostly severe ill health, even my better spells I couldnt have “ a normal life”. Its had profound effects on my family too, I could weep for the strain its put on family.
I completely agree with you, its ridiculous and I feel just angry as you, angry is probably not a strong enough word for what I feel.
I try not to be, its giving the whole disgraceful system more energy than Ive got and wasted too much time on it already.
I was just trying to say having a scar hasn’t helped me, I wish it had.
Hi AS14, I am in the same boat (TT for Medullary Thyroid Cancer and all parathyroids removed as part of bi lateral neck dissection) I am trying to get maximum health from eating a healthy diet, moderate exercise (too fatigued to do too much) and by trying to keep as stress free as possible. I've been following this for three years and this summer felt reasonably happy and well. However, winter makes me dip. I have tried this route as Endo refused to let me try T3, although did say I could have a prescription to source myself. I was reluctant to do this as wondered what would happen if I began taking them and then was unable to get anymore due to Brexit?
If I am still the same, before my next appointment, probably in summer, I will try writing a letter to put my case, so that I don't get emotional and quoting information I have gleaned from this website and hope they let me try T3.
With no parathyroids, it is hard to distinguish which symptoms are due to being hypoparathyroid or to being hypothyroid. I do think the calcium levels are hard to keep stable and find I often have days where I am so fatigued. Calcium levels are definitely affected by illness / stress/ exercise .
I hope that your results are stable now and that you are beginning to enjoy a good quality of life. If you manage to get a trial of T3 please let me know how you managed it.
Im pretty stable calcium wise now but for quite some time after TT I was very unwell. I knew I needed a better doctor so joined parathyroid uk where they have a list of good doctors.
Since I started seeing this new doctor Ive got pretty good control of my calcium levels and symptoms when they do appear are mild, but I do have to be careful with my diet and medications.
Although both conditions have some symptoms in common for me I get some very obvious symptoms for calcium dropping that are quite unique to low calcium and easy to distinguish from hypothyroidism.
For me the first sign I need to do something straight away is pin and needles particularly around my mouth which go on to spread to my entire face. This is the beginning of tetany and I never ignore it, it goes down hill with far worse symptoms fairly quickly if I do. Thankfully getting past the pins and needles stage is rare these days.
Calcium controls nerve and muscle function and when it drops its these that cause the pins and needles.
Pins and needles is very common low calcium symptom and usually the first to appear so clearly different to hypo. Fatigue is a low calcium symptom but the nerve and muscle symptoms are very classic of low calcium and tend to show before other symptoms develop so if you dont have these Id question wether your fatigue is calcium, Id tend to think its hypo especially if you less than optimal thyroid levels.
Ive never been well on levo and very unwell for some time now.
I was refused T3 on the nhs twice but I did try it on a private prescription and reacted badly to it.
T3 and ndt needs good levels of cortisol and serum iron, I had both of these issuues and so far have improved the cortisol but have a ways to go to get the iron high enough.
I will be using ndt as I think having all the thyroid hormones are important after a TT.
Thank you for your reply. I also found the Parathyroid uk site and have found it so informative.
I did already know that the pins and needles , especially round my mouth, are the first signs of low calcium. I too also act on those straight away. There is no chance of me missing my meds as these signs kick in around the time my meds are due. I think the fatigue is more related to being hypoparathyroid but it is hard to tell. Another sign I have noticed is my eye begins to twitch if I am low. Light sensitivity, seems to be another related symptom.
I too have had issues with low iron, and cortisol ( caused by years of intense stress) . Now that my life is less stressful, my cortisol is rising and so is my iron, I'm not anaemic anymore. So although, some levels are not optimum, they're moving in the right direction. I'm still trying to live healthily to continue to improve all vit/ mineral levels.
Thank you for your reply, it is good to compare as I don't know anyone else in the same boat.
I dont know anyone else who has hypopara, Id never heard of it before it happened to me. The first doctor I saw once after I was “signed off “ after my TT had to get her medical books out to check what to do and even then had to go and get a colleague to come join in and all they came up with is “ have a drink of milk when symptoms happen”, they were clueless. That was in a clinic that was held for diabetics, quite a scary experience. No wonder I was so ill.
I mention my symptoms and what has helped me purely me and its so rare and my experience, neither of us know of anyone else so yes its good to compare.
I too get the eye twitching, what weird symptoms but makes it a little easier to watch for and yes mine happen when Im ready for meds or some calcium. I eat regularly through out the day and make sure theres some calcium each time but the most important are breakfast and something before bed, although at night sometimes its extra meds. You can guarantee if miss something before bed I’ll wake up during the night and symptoms will be worse than just the pins and needles, its been fast trip to hospital a couple of times, thankfully thats not happend for a long time. I make sure it doesnt happen again.
My hypo has got worse following an extremely stressful period, Im not in the least surprised my cortisol got so low. Im less stressed now, but theres always going to be some stress, its an unavoidable situation that causes stress however it is significantly less than it was.
I cant say for sure if any of fatigue is caused by hypopara as Im so unwell with hypo so Im guided purely by the other symptoms. Once I get the thyroid sorted and stable I can presume any remaining is parathyroid related. I suspect Im going to feel very different once thyroid is ok and if so I have a good doctor who’ll figure things out.
I should add this good doctor was treating for thyroid too, absolutely awful, the total opposite to the calcium. I wont let him even again, even my rubbish gp is better and thats in our village not an hours drive away, so why bother going all that way to be told the same rubbish.
Nice to meet you and I hope your health continues to improve.
I won the battle for my daughter who had RAI on advice of 3 endos (and before I was as knowledgeable as i am now thanks to this group)Argued that it was their decision which made her body require T3, but that she couldn’t afford to pay for it for life.
I'm now much better placed to fight for myself but I 'm not prepared to jeopardise my health any further to simply fir into guidelines that are not fit for purpose.
All I would accept would be a prescription for NDT x 1+1/2 grains daily - nothing more - nothing less :
I'm not prepared to try T4 monotherapy again, so they can watch my decline, and then, when my brain is totally addled experiment on me again.
Before considering seeing any thyroid specialist endocrinologist, especially privately you need to get FULL thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 tested, especially as taking T3
Have you had thyroid antibodies tested in past?
Need both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
On T3 or NDT - even if normally take as single dose…..day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last dose 8-12 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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