Thank you for this forum - it has been a light in dark times. You are all fabulous and I thank you for sharing.
I just had 8 months of our hell from day one on Levothyroxine. Felt sick, heart racing, couldn’t think straight, breathless heart wheezy, very dark suicidal thoughts, lost my whole life and have to WFH as too ill to commute. At last I am NDT and one week in all nasty toxic levo symptoms have gone and now just have hypothyroidism tiredness.. so of course taking it steady to get levels right.
I am pretty articulate and have spent 8 months telling Doctors what is going on and I have been told - not taking medication correctly (I am very methodical), have stress ( I have done a lot of healing and I can observe and I know the stress is not being listened to by doctors), or menopause ( I am 53 and was done and dusted years ago -early). Levothyroxine seems like a cult and if you dare speak out the doctors don’t like it.
So I have gone private, okay fine. So now I am angry what if you don’t have finances? What if you are a women with kids and have to put food on the table rather than pay for meds? I felt I was thrown under the bus for 8 months - apparently I don’t convert T4 to T3 ( thank you lovely endo). I probably would have done well on T3 but was never offered it. So happy now with NDT. I will of course start writing letters to my MP to try to instigate change.
I also have a friend of a friend who instigated a tribunal with local GP Surgery to get NHS to fund her NDT as it clearly works. She did get funding. There are endless emails and doctors notes on my file to show how awful it’s been. Even a note in January from one apparent thyroid specialist doctor saying ‘patient feeling better’ when I clearly wasn’t - he didn’t listen!
So I feel galvanised… just not sure of the process… even if I loose the point of principle is to try to raise awareness in the GP practice.
Written by
SakaraHare
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The state of care for thyroid disease is appalling
Petitions have gone before Holyrood and Westminster to little avail.
The decision makers just don't want to know.
And for those medics who do know....their hands are tied behind their backs by poor guidelines.
The science is generally sidelined in favour of what is effectively long held ( erroneous) opinions.
Many of us have been on long, dark difficult journeys caused by ignorance and denial in medical circles.
Many of us have had to do our own research in order to discover why we could barely function and then to learn how to self medicate to recover.
Many of us have to buy the medication we need to ( in somecases) keep us alive.
(Hospital or Care would bring further challenges!)
The remainder are most likely suffering in silence behind closed doors having been given wrong diagnoses and wrong medications.
I'd opine that it is tantemount to serious medical neglect but fighting the clout of the establishment is like whistling into a force 10 gale.
Establishing poor conversion ( as you did) is a straightforward process but even that escapes many medics.
The key is T3....but it seems to terrify them!
Without a supraphysiological dose of T3 I would most likely be dead now. I'm now 78 and have travelled this thyroid road for most of my life, for the greater part unaware of the cause on my very slowly deteriorating health!
I'm no longer angry....just despairing for those who are left to suffer and for a failed system that they cannot rely on.
Not sure about a tribunal but wonder if you mean obtaining NDT/Armour on a "named patient basis". NDT is very difficult to get on prescription although a few members have achieved this, the prescribing doctor must take personal responsibility for prescribing it as it is an unlicensed medication. Here is ThyroidUK's article about it:
Yes the system is bloody cruel. I'm on benefits a single parent and have children who still rely on me for support. At first I had a little fund which I had accumulated over the years to help with private health and meds. That eventually ran out. At one point I was taking my full food budget to buy NDT relying on my overdraft and paying 'delay and skip' with some bills. It wasn't sustainable.
I'm fortunate to still get my levothyroxine on the NHS and god bless the poster here (she knows who she is) who helped me with that. As well as all the other posters who have helped in various ways. I source T3 myself. Though still not fully well, I am not suicidal, god bless this forum and the people on it.
thanks for sharing Lovely - the ‘system’ adds more stress onto an already difficult situation. Gees it’s just insane. Levothyroxine is a godsend for a lot of people and I am so pleased to hear it’s helped you and you are navigating T3. Really hope you start to feel more human.
Agree this forum is amazing. We’re all on different stages of a very hard road.
I'd genuinely like to know if thyroid patients are forced to self source or pay privately for T3 or NDT more than any other group of NHS patients. I dont hear of diabetics or stroke/ heart patients or any other chronic condition cohort having to fund their own treatment. It does feel as though we've pulled the short straw in more ways than one.
I take Levo but after 2 years plus on it and despite being on 150mcg a day my numbers for both FT4 and FT3 weren't great. I tried NDT (Thyroid S) that I bought several years ago when the NHS wouldn't treat me, even though TSH was consistently over 4 all the time.
I found it a bit much on its own so decided to combine NDT and a bit of Levo which seems better. I think I needed the T3 in NDT. However at some point I will run out of NDT and will have to decide whether to splash out on more, try and get Liothyronine and add that. Or plod on with just Levo and undoubtedly go back to feeling rubbish.
Its tough as I already get Low Dose Naltrexone prescribed on a private basis as it helps with my Fibromyalgia. The NHS wont help with that either as its unlicenced. It certainly adds up, this self treating lark.
Absolutely, this is what it boils down to. This is the double whammy we experience.
We aren't even considered by our so-called experts as needing the treatment.
Then we have to self-fund the treatment.
I have a dentist (who absolutely understands the need for liothyronine and thinks the UK is like the dark ages in regards to thyroid treatment. I find dentists absolutely in the know) whose husband needs a medicine for his heart that they can only get abroad. The situation is similar to liothyronine price fixing in that the NHS won't fund the drug he needs, despite it being a grandfather drug and cheap.
But even in this situation, the difference is that doctors and his consultant are fully supportive.
We get overall zero support.
We must tread carefully around doctors and consultants meant to help us for fear of having even the standard treatment withdrawn.
Just think of the money the NHS would save if they treated us properly! On friday I have a diabetes blood test, but I dont have diabetes and never have had, but my blood sugar was "pre-diabetes" on one test 6 months ago. I was taking a BP medication that dropped my potassium (low potassium=low insulin=high blood sugar). I came off the BP medication and the next test my blood sugar was fine. Nope - according to the NHS I now have diabetes and need testing. Waste of time and money. Test my T3? Nope, too expensive!
I fought for T3 on the NHS and it was prescribed and then withdrawn. Then later prescribed again and then withdrawn again. The disappointment and feelings of let down were huge but it was that constant fear of having meds suddenly withdrawn that made me give up.
Life evolves all the time and another member being prescribed NHS Armour has just suddenly had it withdrawn after the arrival of a new doctor at her practice. We hear multiple instances on the forum all the time. Even members who have been medicating for years.
Fight if you wish. It is our right to receive the correct meds but be mindful not to wear yourself out and make yourself ill, and winning may only be short-lived.
I hear your story and it all seems exhausting- on top of an exhausting condition.
I just have an innate sense of fairness and how we are treated is insane and cruel.
My impression was I was treated as a middle aged menopausal hypochondriac and now I have my health returning I just don’t want to quietly skulk away. I have a feeling it will all fall on deaf ears but if it helps one person in the future in my locale it’s worth it.
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