However, in 2018 I developed an immune problem which means that I react badly to the fillers in meds (throat and tongue swelling).
I've been through every option licensed by the NHS, and react to all of them.
Private script isn't an option for financial reasons.
I know I can take Erfa (dad is on it and donated a few testers), and Tirosint may be an option.
Is there any mileage in pushing for the Tirosint on the NHS, given that NICE BNF has a Tarrif Code (Part viiiD - but I can't find what that means) listed against it?
I'm honestly getting close to the point where I just give up and accept that I'm going to die from lack of treatment (untreated for over a year now, TSH high, cold all the time, weight gain, hair loss, and it's impacting on both lipids and blood sugars).
Is there ANY hope that I can get sorted on the NHS?
No, not Hashimoto's - all antibody tests have consistently been negative (though I do have a few autoimmune conditions). My thyroid gave up the ghost in 2001 following an abdominal laparoscopy. The endo I saw said something had gone wrong in the surgery but wouldn't say anything further. I can't even begin to guess!No vitamin supplements (can't find any clean enough). Vitamin status unknown, but likely to be poor. I'm in Northern Ireland, and it's almost impossible to get organic fruit and veg here now. I've to do a 3 hour round trip to pick up supplies once a month, and even then their Dutch supplier only sources from EU, so I'm back to apples, pears and bananas. Actually been talking with hubby recently about moving to England just so I can get the food I need! So diet restricted but uber clean. Milk and gluten not an issue. It the titanium white, citric acid, calcium carbonate etc that are issues for me (same issue with them in foods and supplements).
It would probably be useful for me to get vitamin levels - I'll have a look for at home testing.
Thyroid tests have been low t4, high tsh for 1 year. T3 had been managing to stay in low normal until about 4 months ago, and it's now low too. Can go get the values if you want them
Yes, dad has an understanding GP who provides a private script.
I last saw an endo in 2002. Waiting lists here in NI are normally a min of 4 years (some specialisms are 10+ years) so not much hope of help there any time soon on the NHS! I'm going to request a callback from the GP Practice pharmacist. Hopefully it's still the same one I spoke to a few years ago, who was actually switched on to mast cell issues. It was him that switched me on to the last remaining levo (eltroxine), and was at least sympathetic to the issue
It may be worth trying a liquid version, but I very much doubt I'll tolerate them. Too many ethylated ingredients that have frequent PEG contamination, which I'm allergic to.
i toohave been on levo 100 fpr 9 years last year been uppedtp 125 still feel ill i have sinuis issues really bad for at least 6 months a year started 2 years ago it a i had sinuis facial nose pain stuffy has ct and mri scans allergy tests throat scan which reveales a shrunken thyroid all clear on everything which is great but still ill cold hands feet depressed tummy issues as well as sinus pains , crying all the time i had been on my 3rd dose of ant bs for my sinuises now been ill with it since nov. reaserched lots of sites and found out that levithyeoxine does cause sinuis issues its not the levo its the fillers i saw my doc on fri i told her that i have 10 out of 13 symptoms of being sensitive to filllers i asked for tirosint as its pure she said she would do some reasearch on it and see if she allowed to perscribe it i thnk its more exprnsive a few hours later she text me saying i can have it so stick too your guns google symptoms of being allergic to levo fillers print it off go back to your dr dont take no for a answer not got my perscription yet still in pain and freezing cold but hopefully this week ill let you know how i feel good luck dont give up i think my tears helped because im so desperate try that too eve.
hope you get it sorted still no perscription yet in pain with my nose it feels like i have a pencil stuck up it and the roof of my mouth is sensitive too but hey ho hopefullly get better soon .
How I know that feeling well. I have just started Tirosint (on private prescription) as a trial before I see my GP. I must admit I feel a little better after just 2 weeks so I'll see how it goes!
I COULDNT GET TIROSINT NOONE STOCKS IT NEAR ME SO I CHANGED TO LEVO ARISTO BE CAUSE ITS LACTOSE FREE I SEEM TO OK ON THIS JUST GOT OTHER ISSUES NOW IYS NEVER ENDING IS IT BUT GLAD YOU ARE OK .
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