*Sighs* No such thing as "NORMAL" for me... I was born without a thyroid gland, which was discovered when I was 4 months old.. This occured because when my mother was pregnant with me, they were giving her thyroid supplements... the consensus was that She over compensated and I didn't develop a Thyroid gland..
Family lore tells me I was the baby that made it mandatory to check for thyroid at birth.. 1961.. I know not if it's true, however even if I wasn't that baby.. I hope it was recorded.
I am congenital/central hypothyroid... I do not feel like the average bear as it were... About 1.5 years ago, my primary care doc, started lowering my thyroid.. because my labs said everything was high.. and a low... so she took me from being perfectly fine at the .150 mcg of levothyroxin that I had been taking for years, down to .125 mcg, and a month later down to .112 mcg.. I was Barely able to get outta bed.. I had Massive issues with impulse control.. in other words my mouth had no filter.. almost lost my family behind this from calling up long dead crap.. so I told her in a letter, that she didn't know what the Fk, she was talkin about, so please refer me to an endocrinologist.. so she did, He immediately put me back on .150mcg and all was right with the world.. then I got breast cancer... family decided to start talkin to me again.. funny how that works.. anyway.. so Now my endo is Lowering my dose again based on freakin numbers...after telling me that he'd listen to me, and how I felt.. IF it ain't broke Don't fix it!!!... I wasn't Broken.. so my endo takes me from .150 down to .137.. I told him that i had Just gotten a 90 day supply of the .150.. so he says.. ok, take that 5 days a week.. ok.. so I did.
By this time I had been through my chemo/radiation as of may 1, 2019..
Into week 2 I started losing steam.. energy.. mental focus... by week 3, I had zero energy.. and can barely perform daily chores.. by week 4, the energy was non existant, and depression set in...this past Friday, I wrote my endo.. told him that as per him I had cut out two days of my levothyroxin.. he sent me to the lab, as well as telling me, that I was averaging .107mcg... I reckon he mis-calculated on how many doses to miss.. like perhaps instead of missing two days maybe I should have just missed one day, so Tuesday this week I went and had my blood work done... still waiting for results.. I am also taking B12 5000 mcg...and D2 50000 units...I put myself on magnesium, 500 mg, due to leg cramps...
I feel Like I am Backwards!!!.. Like these labs don't even apply to me.. because everything that the doc is tellin me is polar opposite of how I feel..
I also have to contend with the side effects of my aromatase therapy... Hormone blocker because my cancer was estrogen receptor positive 95%... which has it's own host of side effects....
Let's put it this way.. I am sick n tired of bein sick n tired all the time...for the first time before all these changes I was starting to feel half assed normal.. workin around my house, and the yard.. started feelin really decent... Now.. UGH!!!
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Larai
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Just refuse to reduce your dose. This is not a 'numbers game' it is your life and your health.
These doctors are supposed to be treating the patient, not adjusting doses to fit the TSH into some sort of range.
Being born without a thyroid gland is bad enough without them messing about with your dose.
Do you follow this procedure when having a blood test:-
The earliest appointment - even if you have to make it weeks ahead. Don't take levo before the test which is usually taken first thing on an empty stomach with one full glass of water and wait an hour before eating. This helps give an accurate result because if it is later in the day or we've eaten, this will reduce the TSH and that's what we don't want. The majority of doctors these days only consider the TSH alone.
It would be different if Endos/doctors knew any clinical symptoms but nowadays they dont and TSH is not a thyroid hormone it is from the pituitary gland which tries to flag up the thyroid gland to produce more hormones.
The fact, too, that you've never had a thyroid gland you have no idea what 'normal' health is.
The two most important tests are Free T4 and Free T3 which are rarely tested (costs more money) but I think after all you've gone through they should do these. Always follow the method above, i.e. 24 hour gap between dose and test and take hormones afterwards.
You should also get B12, Vit D, iron, ferritin and folate tested as everything has to be optimal - not normal or in range - but optimal.
Maybe give your Endo/doctor - everyone - the following:-
The latter is a doctor whom everyone would like to consult, and it is no wonder his list if so full he cannot take any more onto his list (He's in the USA):-
"Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level. Abundant research shows that this practice usually does not restore euthyroidism--sufficient T3 effect in all tissues of the body. It fails particularly badly in persons who have had their thyroid gland removed. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy.
The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of inactive levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. IF you continue to suffer from the symptoms of hypothyroidism, you have the right to demand that your physician give you more effective T4/T3 (inactive/active) thyroid replacement therapy. Your physician can either add sufficient T3 (10 to 20mcgs) to your T4 dose, or lower your T4 dose while adding the T3. The most convenient form of T4/T3 therapy, with a 4:1 ratio, is natural desiccated thyroid (NDT-- Armour, NP Thyroid, Nature-Throid). If you have persistent symptoms, ask your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the
blood drawn in the morning prior to your daily dose.
p.s. NDT (natural dessicated thyroid hormones) was prescribed since 1892 until the present day when it was withdrawn in the UK. It is amazing how 'supposed to be experts' can possibly be unaware that to do so catapults those who are suffering into a worse state, but they have to make False Statements in order for it to be withdrawn, again leaving those patients who were well upon it without any options except T4. They've also withdrawn T3 - absolutely these people are without a conscience or that 'little something' that makes a patient well instead of constantly ill and worried.
We wouldn't expect to learn that those in the upper echelons can make decisions which ruin people's lives altogether and if family members don't understand either (if GP states they are on a sufficient dose) and assume we're malingerers there's no sympathy forthcoming for that person.
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