Just got new labs. After one month on 1 grain WPThyroid, TSH was 14.37 (.40-4.50).
I increased to 1 1/4 grain without Doc's permission and now
TSH .97 (.40-4.5)
T4 .8 (.8-1.8)
T3 2.7 (2.3-4.2)
I told Doc T4 and T3 are too low and still have symptoms and want to increase to 1 1/2 grain. She said "no increase, stay at 1 1/4 grain." What do you think? I intend to increase anyway but would like to know anyone's thoughts on this. Shouldn't T3 and T4 be higher?
Yes, they should be higher. I feel optimal when my FT4 levels are mid-range or slightly above mid-range, and my FT3 levels at the very top of the range.
You should not go by TSH when on NDT, as T3 tends to suppress it. Go by FTs instead.
A healthy thyroid produces hormones in amounts equivalent to what 3-5 grains of NDT contain, so 1 1/4 grain is not much.
Anna--Thank you for responding. You are confirming what I believe to be true. Thank God for this forum. The docs will kill us.
Amen!
...I would only trust the Endo not the GP...
Your Doctor, doesn't know what she is doing. She will leave you ill. You are severely undermedicated, at least according to your labs. I would find another source for your meds. You will eventually run out.
I agree. Finding another source may not be easy but I'm planning on giving it a go.
See if someone here can direct you. I have a real disdain for doctors. This whole, terrible experience has changed me in so many ways. Not good ways either. And the doctors telling me it's always something else besides my Thyroid being the problem. They totally ignore the autoimmune issue as well.
I am totally with you. I wish we didn't need them for the prescription. I would much rather just take care of myself. I will never understand why they don't get it.
Yes they do ignore the auto immune issue??why??? It's scandalous and nonsensical. My Endo says he is 'the best in the country'..no arrogance there then but has no answers as to why I , like so many others have auto immune antibodies attacking my own thyroid/thyroxine but the answer is to give more thyroxine???..after 10 years of unbelievable illness on t4 I can't even take NDT because my brain shuts down so am restricted to tiny doses of T3 only...all of which I have had to work out on my own. I asked for a second Endo opinion and was offered a man who has won prizes for his Endo work...when you google him you find out that he believes all of us who are complaining of feeling 'unwell' when are meds and bloods are 'correct' are in some form of 'Somatiform'. I am now following Dr Sarah Myhills protocol for M.E ..and eat no gluten. I was tested for gluten antibodies by an NHS ataxia neurologist in Sheffield who uses a different testing system from normal'testing' for coeliacs and he confirmed that gluten was going through my gut and straight into my brain causing ataxia, blurry vision cognitive malfunction and much more. The protein in gluten is almost identical to T4 so when my body attacks the gluten in my brain it also attacks the thyroxin.....this does make sense. It's a complicated serious problem which no endos are addressing...they would rather win prizes for their imagined brilliance. Rant over.
You probably already know this, but low B12 is a very common but undiagnosed cause of ataxia. Gluten isn't good for us either so avoiding that is totally sensible. I had severe ataxia - neurologist thought I was in the early stages of motor neurone disease - couldn't climb stairs, sit down or get up again without help and it was due to very low/normal range B12. Once I got my levels up to 800+ the symptoms disappeared.
Apparently low b12 in the elderly is often misdiagnosed as dementia.
I have largely given up with the medical system, it's populated with egomaniacs and psychopaths IMO with a few sane and truly caring people struggling to do what they trained for - help and heal ill people. I think one is safe enough if you can tell the doctor what's wrong with you and know what needs to be done to sort it otherwise I avoid them like the plague. When I was really ill and hopeless with undertreated hypo and associated low everything else, the medics were useless. If not for the saintly DrP I would be in a wheelchair now.
Knowledge is power, eh?
Yes thanks it's true of course about B 12.. Dr Myhills protocol includes all the B vitamins but I probably need to increase B12. My ataxia seems to lessen when I am off the T4 but especially when I keep well clear of gluten.I agree re the medical profession generally ..they have been utterly appalling on almost every level from their derision and disbelief to their lack of care and ability to move outside of their cosy well paid world of glory. It was Dr P who advised T3 only. It's difficult but better than any other way of doing it. I understand that For most people with Hashimotos T3 needs to be at the higher end and. TSH at the lower.. to mitigate the auto immune process. Personally I take little notice of test results I just go on how I feel. It's my body and I know when I feel well and when I don't.
My teenage son had what looked like CFS - we didn't buy that - and eventually took him to Dr H in Belgium as medics here were useless as usual. It seems he was born with an issue in his adrenal function which was exacerbated over the years by a diet very high in carbs - specifically wheat based. Dr H put him on a paleo diet, no carbs/gluten plus various hormones which were insufficient in his systemand 15months on my son is really healthy, back in school, socialising, confident, etc. The change of diet has made a phenomenal difference along with the hormones his body isn't produc ing in the correct quanitities.
Using pure T3 was the route to wellness for me (along with getting the mineral and vit levels optimal) - I took it for a year and then went onto NDT and a little T3 when I feel I need a bit of a boost.
So good hearing all this. Finola I am 60 years old and collapsed when I was 15 . I then spent the next 15 years being treated like a leper before being diagnosed with CFS ..and then continued to be treated like a madwoman!!.. I have largely adopted a healthy lifestyle with homoeopathy, acupuncture etc but then when I was diagnosed as hypothyroid I thought things would improve. How wrong was I ??levothyroxine nearly killed me - undermining my system and blocking any chance of energy. I have thought that when I finally clear my system I may try NDT again so thanks for sharing that. I am fairly certain now that my M.E is/was a poor conversion problem from T4 to T3 following the Epstein Barr virus...so what you say about your son makes perfect sense. Well done for taking him abroad. Sadly when I was young the doctors were god and my parents would not have dared to argue or research anything. These forums are so helpful..not least to let people know they are neither mad nor alone!!
It seems one of the hallmark issues, with people who have gluten problems is Anemia from b12..Pernicious Anemia? My mom had that for years, developed Celiacs suddenly and dies from intestinal Lymphoma. I swear she had Hashis..this was many years ago. I have Hashi's. I had gone gluten free for 6 mos and no improvements. I have had the skin prick food allergy tests, blood tests and igg and ige food allergy test and a biopsy of my intestine and Gluten is always totally negative. I did however show a positive result for Milk, on the igg, ige tests. I have cut out all dairy, although it says i can eat cheddar cheese, not Swiss or american..i just don't know. Anyway, my acid reflux and slow gastric emptying is better, but i did go to t3 only at the same time. My stomach would not digest..Gastroparesis. I have recently lost most Myxedema and am close to my normal weight for the first time since 2010. But, i still have bad symptoms, like insomnia, heart racing when trying to sleep, acne..all of which i think is from the autoimmune condition itself. I order my meds from Mexico and stay away from doctors.
Imagined brilliance! Great phrase. :-).
Follow your instinct. I would increase if I still had symptoms. 1 1/4 isn't too high a dose. Some take up to 4 gr.
Read the first question on this link. This is how treatment used to be done:
web.archive.org/web/2010103...
stopthethyroidmadness.com/m...
Thank you for the link. I'm going to start charting my basal body temp and and pulse.
Yes - looks like you need an increase to me too. You'd doc is going by TSH (as most do). I too am on NDT and feel best with mid range ft4 and top third if range ft3 (TSH undetectable).
You are the 2nd person to say fT4 midrange and fT3 top range. That's what I'm going to shoot for. Thanks for your response.
Actually just got latest blood test results back and ft4 is a bit below mid-range at 15.6 (12-22) and ft3 is 5.1 (3.1-6.8), TSH is undetectable. I feel well with these results 
x
You do not need your doctors 'permission' after a;ll they can go home and forget you but you cannot forget you are hypo!!
Agreed.the idea that these doctors have your best interests at heart is ridiculous. They follow the made up guidelines and prescribe accordingly..it has nothing to do with you as an individual and even less to do with health or wellness. They have known for years that prescribing thyroxine for auto immune thyroiditis doesn't make people well but they simply don't care. It's all about ticking the boxes and taking the money. And if you don't get well that is somehow your fault.
xx
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