Hey all, after many years of being treated with Nature Throid in England and Scotland I was stupid enough to move to Wales where they are refusing to prescribe Nature Throid and have told me it is Levothyroxine or nothing. An anyone advise if this is negligence/lack of duty of care, and should I take this to court? I am allergic to levothyroxine.
Thanks, a very worried boy!!
gordies I am allergic to levothyroxine.
Is there something recorded by a specialist in your medical records that categorically proves this? If yes, then you could have a valid argument for refusing levo.
anyone advise if this is negligence/lack of duty of care, and should I take this to court?
Very doubtful. No desiccated thyroid products are licensed in the UK. The fact that you've been prescribed them elsewhere in the UK is extremely fortunate, and has been purely at the discretion of the prescribing doctor/CCG. Many of us have either had NDTs taken away from us, or have been refused them point blank from the start. And I'm not just talking about Wales!
Yes, months of tests recorded showing allergic to Levo and even lactose free liquid levo.
gordies What tests? Do you mean thyroid hormone tests or tests that prove you get an allergic reaction (as in sneezing, itching, rash etc.)?
I was tested on different types of Levo - tablet, liquid, lactose-free etc. The sudden appearance of a rather aggressive rash was enough for the GP and Endo to know something was amiss. I also 'played their game' with tablet based Levo and tried it for a few months and my bloods were all over the place, the rash was annoying as hell, and my general symptoms got worse. (this, of course, was after one idiot told me I just had CFS and to get on with life as best as I could). I paid for private bloods to prove I had Hashi's (both sets of antibodies) and then I finally got an ultrasound scan done, and that helps my case as it showed clear issues.
Ok, got you. GPs mostly don't bother to read previous history and even when they do, they rarely put everything together and make sense of the situation. I suggest writing a clear, polite and concise letter, detailing the course of events, pointing out the adverse/allergic reactions, charting the blood results and stating exactly why you will not and cannot take levothyroxine. Add in the positive evidence that shows why you do best on desiccated thyroid and need it on prescription. Make sure your new GP receives the letter and is asked to read it ready for your next appointment.
I'm not saying for one minute that this will change everything for you of course, and in the end, you may have to go down the self medication route, as many here have had to do.
gordies
Welcome to Wales and it's cruddy hypothyroid health care. I'm in north Wales and years ago saw an endo who probably would have happily seen me die than have a TSH below range. It didn't take me long to ditch him and learn to help myself.
🤣(not funny though)
That’s terrible.
But I also inwardly laughed in that “what a f**ked up world we live in” way.
If I was really mean, I would wish for every doctor who is a slave to TSH to be struck down with hypothyroidism, be dreadfully symptomatic, doesn't get on with Levo and ends up with a suppressed TSH and poor conversion of T4 to T3, becomes really ill and their own GP also be a slave to TSH and they remain ill. But then.......... oh blow it, I'm feeling really mean today 🤣
That’s not really mean, that’s what they deserve...and then some!
Unfortunately for those hypo patients who don't live in Scotland will rarely be prescribed NDT (Nature Throid or other dessicated thyroid hormones) and that's due to False Statements being made about it by 'professionals' who ought to know better (but unfortunately don't) even though it saved lives from 1892 onwards.
One of TUK's Advisers wrote the following to them every year for three years asking for a response to his Rebuttal. They never did respond.
drlowe.com/thyroidscience/C...
For people who I would have assumed would be very sympathetic to ill patients who are hypo and who cannot improve on levothyroxine, are anything but sympathetic. The fact also that they've withdrawn T3 too (this time cost when it can be sourced elsewhere at cheaper prices). Leaving only levothyroxine alone to be prescribed and a majority of hypo patients cannot improve at all on it.
Why do the professionals presume that they know better than the patient of what thyroid hormone restores their health. We should definitely have options. OR maybe if those who made the decision should have their thyroid glands removed just to see if that person's good health will be restore by T4 alone - and I am aware that many people do so. I doubt they will be on this forum looking for advice.
The Scottish Assembly passed a vote that those patients who weren't improving on levo could be prescribed NDT and or T3.
Lorraine Cleaver did approach the Scottish Assembly and was successful:-
I was prescribed Levothyroxine but did not help my CFS symptoms in anyway.
My private GP suggested to do DIO2 test, which came positive means I was not converting T4 to T3. Hence started on small dose of T3 purchased on line from Mexico.
It has been now 5 years I take T3 only & I am much better then before. CFS @ Hypothyroid symptoms are still there but can be ignored & live life as normal as possible at slower pace.
Do not waste your time in challenging Your GP & taking him to court. Buy T3 on line from US or Turkey or Mexico and adjust your dose as per Thyroid blood test which cost about £157.
And enjoy the life you deserve with the generous help from this forum.
God bless you & hope you feel better.
You wont get anywhere with taking them to court. You wont even get listened to, believe me.
The only thing I can suggest is writing to the practice manager explaining that you are very worried that the GP will make you ill by prescribing Levo, as you are allergic to it, and this has been proved in the past. You do not want to get ill, and it is worrying you that the GP has said this is the only way forward. Unfortunately the top bod in Endo in Wales is very against anything but Levo.
You do have one thing in your favour being male. You are less likely to be labelled a hysterical female, so may just have a chance of getting someone to listen to you. Good luck!
Lol @ “hysterical female”. Ohhh, if I had a pound/dollar for every time someone implied or said it to me, I might be rich!
Sometimes 'they' are swift to prescribe antidepressants rather than some T3 as FT3 is rarely checked along with FT4..
hi guys, just to let you know I have gone down to 2 x 1 grain (38mcg T4, 9 mag T3) Nature-Throid in the morning and 12.5mcg of T3 at 2pm (instead of 2 x 1 grain Nature Throid) until I see what can be done (if anything). I have sourced some Tiromel as a backup plan. The first thing I can report is a massive change in my mood, with the slightest little thing having me blow my top (back to the good old days - eh?). No response from my GP, Endo or Hywel DDA (no surprise) as yet either.
I am not medically qualified and
2 x 1 grain (38mcg T4, 9 mag T3) Nature-Throid is equal (approx) to 200mcg of levothyroxine (in its effect).
12.5mcg of T3 is approx to 50mcg of levo.
I wonder if your combined dose may be a little 'too much.
The following might be helpful and I know how frustating it is to get a dose of hormone replacements that make you feel well again. Dr Lowe was an Adviser to TUK before his accidental death.
naturalthyroidsolutions.com...
Interesting, as I was thinking it is not enough, given that I was taking 4 grains per day of Nature Throid. i.e. equivalent of 400mcg levo in its effect. I am now taking the 2 x 1 grains in the morning, and only 12.5mcg of t3 at 2pm, so effectively a reduction of t3 from 36mcg to 30.5mcg per day, and only the 76mcg of t4 in the morning. Ohhh what a pain this is, especially when I was doing so well on 4 grains per day for, at least, the last 2 years.
It is frustrating, to say the least, if the dose we've been taking has been beneficial.
Sometimes - if the maker of any thyroid hormone replacements make a small adjustment - at times - to the fillers/binders - that may affect us in a negative way.
We wonder why we feel symptomatic so we always seem to be on a merry-go-round (without the merry) trying to figure out why we are now experiencing symptoms. If we are symptomatic small adjustments may make a difference. Also if fillers/binders are changed that could also affect us negatively.
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