Levothyroxine, erfa not working, desperate situation.

[edysia2]

Hi everyone. I am sorry to be brief. I am so, so, so unwell that i will just make my post short. I have never tried properly levothyroxine, I took one tablet in the past and suffered stomach upset, maybe it was a coincidence, but I did not try again and instead taking more levothyroxine I went straight into erfa. Unfortunately after 9 months of trying to adjust the dose of Erfa, I have only became more sick ( keeping my D3, B12 high and taking now iron supplements to increase my iron/ferritin levels).

I have no GP at the moment, as I am undergoing a lengthy complaint process (what GP's did to me... it is just hard to put it into words)

I have run out of Erfa tablets anyway and I have old Almus levothyroxine at home ( prescribed a year ago but i did not use it and it is still in date, use by 04/2014).

I have done some private testing and my T4 is falling drastically ( around 9 at the moment range 12-22, T3 in September was 5.3 for with range 3.5-6.5), cannot afford more private tests at the moment, unfortunately I did not check for reverse t3 as i have planned.

I am so on my own and so desperate that I think I am going to try levothyroxine that I have at home. I am not sure what can happen to me? they are 50mcg tablets, and they have a score.

Can I cut them in half? I assume that I can. I need to try something as I am so sick that is beyond description.

I did not go out for 2 months, because I cant, I am weak and attacked by various infections, I cant breathe, I cant walk, I cant think. It will be a long time before I will get to see any doctor. NHS England and other relevant authorities keep me waiting for months with no GP... it is just a real terror, and neglect beyond measure, still with tumor on my ovary which is causing more and more pain and poses a risk of malignancy. I am left to hang in there..... but i cannot really wait any longer so I thought that I will give levothyroxine a try.

Oh yes and my nearest hospital was voted as 1st in the list of the worst hospitals in UK, I have visited A&E many times and I must say it is a bad place.

[Duchy82]

You can cut them in half but i would just take the full 50mcg you can't go without any medication for your thyroid problems.

I'm sorry to hear you have had such problems with your gp could you not find a different gp surgery or even maybe go to the emergency doctors for help? If you are this unwell you cannot go without medical help.

[helvella in reply to Duchy82]

Edysia,

I agree with MCoates.

You can split the tablets if you really feel the need.

The Patient Information Leaflet even says:

If required the tablets can be dissolved in 10 to 15ml of

drinkable water and given freshly prepared with some more

liquid (5 to 10ml).

In case that helps.

You should be able to get registered with a doctor - the NHS advice is:

If you are having problems registering with a nearby doctor then please contact your local NHS Commissioning Board Area Team.

nhs.uk/NHSEngland/AboutNHSs...

Wishing you well.

Rod

[edysia2 in reply to helvella]

Thank you Rod. The problem is with catchment areas, I have used two surgeries with my catchment and they were really bad, and neglectful, so I have run out of options. This is why I am going through complaint procedure with NHS England, 3 months and still nothing, they do seem not to care, despite all the fight and explanations, I did all I could. On the top of that my medical record is so messed up with outrageous information. It is unbelievable but it is happening.

[helvella in reply to edysia2]

You could always try the Commissioning Board Area Team - they do, at the end, have ways of achieving registration even if you might normally be excluded by catchment area. Surgeries do have to take some patients who have been refused by many surgeries/doctors.

Even people who have been in gaol for violent attacks on health workers can get to see doctors. You are simply a poor patient who is unhappy.

Please, please try to get to see a doctor again. I know how difficult it has been.

Rod

[edysia2 in reply to helvella]

I am not sure if we have here Commissioning Board Area Team here, I have contacted Clinical Commissioning Team ( unhelpful) and my local MP who wrote a short letter to one of the surgeries, asking to take me on. I am 'an expensive' patient, I have quite a few conditions and I need referrals, they know that and that is creating problems. I am not sure what is going to happen, a huge amount of bad luck I just took 50mcg of my old levothyroxine( still in date, and I hope that tablets do not lose potency just because they have been in my drawer for almost a year??)

Thank you Rod

E.

[tingles in reply to helvella]

good info Rod x

[edysia2 in reply to Duchy82]

Thank you MCoates, I have just explained to Rod, I am trying to get into another surgery for the last 3 months and as it is no surgery within my catchment area that could help I have to look outside, and there is the problem, NHS England complaints and all sorts... just draining. I know that I cannot go without medical help but I am, this is happening to me

[Hidden in reply to Duchy82]

The emergency doctor idea sounds like a good idea for help in the short term. You might even have a word with your pharmacist, who could have an idea who you could talk to.

[edysia2 in reply to Hidden]

Thank you so much for replaying Humphrey. I will try to talk to pharmacist, I had bad reaction to this levothyroxine that I took yesterday. emergency doctor wasn't very helpful in the past, sadly. E xx

[silverfox7]

Don't worry about the potency of the tablets. I once found an old packet that had been overlooked by me and I discovered it in its use by month. I checked with the pharmacist who said no problem and that there is a safety margin in the use by date anyway. Hope you soon get sorted and start to improve.

[edysia2 in reply to silverfox7]

Thank you silverfox 7. I took it and it was potent, I had bad reaction to it. Thank you for reply. I feel very unwell so I am sorry for being brief . E xx

[Natalie_Edinburgh]

Why don't you give a fake address and register elsewhere. Perhaps use a friends address so that they can pass on letters.

[edysia2 in reply to Natalie_Edinburgh]

I cant really do that, things are complicated enough with the NHS complaint, and i would not like to make myself look bad by giving false address. Thank you for your reply . E xx