LOOKING AFTER YOURSELF AND YOUR MEDICATIONS

[peteromalley]

HELLO. MY NAMES PETER, I HAD A CRANIOPHARYNGIOMA WHEN I WAS 14 YEARS OLD, LEAVING ME WITH HYPOPITUITARISM AND ALMOST BLIND. THAT WAS 44 YEARS AGO.
ONE OF THE THINGS I HAVE LEARNT DURING ALL THE YEARS WITH ALL THE ISSUES AND PROBLEMS ASSOCIATED WITH PITUITARY CONDITIONS IN GENERAL IS THIS. KNOW YOUR OWN BODY. HOW IT WORKS AND HOW THE MEDICATION EFFECTS YOUR BODY.
YOUR MEDICATION IS MEANT TO WORK IN A WAY THAT BENEFITS YOU AND PROTECTS YOUR BODY FROM STRESS AND CRISIS.
IT DOES MEAN BEING DISCIPLINED AND HAVING A ROUTINE WITH TABLETS ETC, THAT WORKS FOR YOU. TAKING MEDICATION AT THE CORRECT TIMES AND MAKING ANY CHANGES, WITH ADVICE FROM YOUR SPECIALIST OR HEALTH CARE PROFESSIONAL.
PERSONALLY, I HAVE RUN INTO PROBLEMS WITH MEDICATION WHEN A LICENSE HAS BEEN SOLD OFF. THE MEDICATION IS CHANGED AND OTHER MANUFACTURERS THAT HAVE BEEN AVAILABLE, ARE NO LONGER MAKING THE MEDICATION.
FOR INSTANCE. IN MY CASE I HAD A REACTION TO A LEVOTHYROXINE TABLET MADE BY A COMPANY CALLED TEVA. WHAT CONCERNED ME WAS, IT SAID "NEW FORMULA". I THOUGHT WHY WOULD SOMEONE CHANGE THE FORMULA OF A MEDICATION THAT WORKS. I STARTED TO TAKE IT. WITHIN A COUPLE OF MONTHS, I WAS FEELING ILL. I WAS SLEEPING FOR LONGER AND LONGER PERIODS. I WAS ALWAYS TIRED. I DIDN'T WANT TO EAT. MY SKIN WAS DRY AND ITCHY. I COULD NOT REMEMBER SIMPLE THINGS. THEN I HAD A PROBLEM WITH MY HEART RATE. AFTER TESTING, IT WENT DOWN TO LESS THAN 40 BEATS PER MINUTE DURING THE NIGHT. FORTUNATELY, THE BODY IS VERY CLEVER AND WOKE ME UP WHEN THAT HAPPENED, WHICH INCREASED MY HEART RATE. I ALSO HAD AN ULTRA SOUND SCAN ON MY HEART, THAT WAS NEGATIVE.
IT WAS PAT MCBRIDE THAT POINTED OUT THE REAL ISSUE. THYROXINE.
I SPOKE TO MY ENDOCRINOLOGIST ON THE PHONE AND THE ENDO NURSE. THEY EMAILED A LETTER TO MY G.P. THE G.P. WROTE OUT A NEW PRESCRIPTION AND I MY THYROXINE WAS INCREASED BY A SMALL AMOUNT. WITHIN A SHORT TIME, I BEGAN TO FEEL BETTER. MY "MOJO" CAME BACK. MY SKIN IMPROVED. MY APPETITE WAS BETTER. AND GUESS WHAT, THAT SLOW HEART RATE DISAPPEARED. ALL RETURNING TO NORMAL. EVEN THOUGH THE BLOOD TEST FOR THYROID LEVELS CAME IN AS NORMAL, THEY WERE NOT NORMAL FOR ME.
SO AFTER A LOT OF PERSISTENCE. ANNOYING MY SPECIALIST, UNTIL HE DID RESPOND. TALKING TO MY G.P. CALLING THE HELPLINE, I GOT THERE.
PLEASE DO NOT TAKE FOR GRANTED THAT YOUR MEDICATION IS FIXED, SO IT MUST BE SOMETHING YOU ARE DOING WRONG. THAT MAY NOT BE THE CASE. TALK TO YOU G.P. GET THEM ONSIDE. TALK TO YOUR ENDO NURSE AND SPECIALIST, THEY ARE THERE TO HELP YOU. THEY DO NOT SUFFER WITH THE CONDITION. YOU DO. ABOVE ALL BE PATIENT BUT PERSISTENT.
BYE

[plum]

hi Peter
just wanted to say thanks.
that's good advice.
and i like the phrase patient but persistent!
take care
plum

[peteromalley]

I JUST WANTED TO ADD TO MY OTHER NOTE.
IT HAS TAKEN A FEW WEEKS ON THE NEW DOSE AND PROPER LEVOTHYROXINE FOR ME TO FEEL PROPERLY BETTER. I AM STILL GETTING THE DAY TO DAY WEARINESS ETC THAT PIT PATIENTS GET, BUT I AM NOW AT THE ANGRY BIT.
HOW DARE THESE FLAMING DRUG COMPANIES, BUY UP A LICENSE, CHANGE THE FORMULA, AND THEN ADVERTISE THE CHANGE ON THE PACKAGING!
I WAS UNDER THE ILLUSION THAT A "NEW DRUG" I/E A NEW FORMULATION FOR THYROXINE, HAD TO GO THROUGH TESTING BEFORE IT WAS CONSIDERED SAFE FOR HUMANS TO USE.
BUT IT SEEMS, A DRUG THAT HAS BEEN TRIED AND TESTED, CAN HAVE IT'S FORMULA CHANGED, FOR EXAMPLE, REMOVING LACTOSE AND REPLACING IT WITH CITRIC ACID AND ANOTHER CHEMICAL, THEN GIVEN DIRECTLY TO HUMANS, BECAUSE IT IS STILLED CALLED LEVOTHYROXINE! IS BEYOND ME.
THE REALLY INFURIATING PART IS THIS, IF THIS WAS DONE WITH ANIMAL FEEDS, THE AUTHORITIES WOULD BE IN THERE LIKE A SHOT AND STOP PRODUCTION. TEST ALL THE CATTLE WHO HAD EATEN OR ABSORBED THE FEED. PROSECUTE THE MANUFACTURER AND SUPPLIER.
I REALLY DO NOT THINK, THAT MANUFACTURERS OF DRUGS FOR HUMAN USE, WHO HOLD A LICENSE TO PRODUCE IT, SHOULD BE ALLOWED TO ALTER THE FORMULA IN ANY WAY AT ALL, WITHOUT AT LEAST 3 YEARS OF TESTING.
THAT'S IT. RANT OVER. I WISH I COULD SAY ALL THIS TO THE DRUG COMPANIES, WHO PUT LIVES AT RISK! PETER

[plum]

hi
if you go onto the website of the drug company there might be a contact us page.

i tried that once to a drug company (it was running a really poorly thought out campaign) and someone did get in contact.
there were a few emails back and forth after that.

i learned to keep my messages brief since these people don't seem to have time to read in depth.
and to limit the points i mentioned otherwise they will pick up on the bit that is favourable to them and ignore what is most important to the patient!

good luck