Hi! Just looking for maintenance recommendations and any advice is greatly appreciated!
Went to a new doctor (endocrinologist) to get a 2nd opinion on my thyroid condition. Of course, my goal is to heal and get off meds completely one day but she said she does not feel it is possible.
Was first diagnosed Graves back in 2019. Was on methimazole and then taken off. I was taken off meds for about 6-12 months then went hypothyroid. Was diagnosed a couple of years ago with Hashimoto's. Now I am on Synthroid 0.112 mg (112 mcg) and skip one dose every other Friday (as recommended by my previous endocrinologist). My new doctor is not changing my dosage said I am normal and doing well. She will not redo my bloodwork again until August. Not sure if that is good or bad since my last Dr had me go every 8 weeks or so. She said I can wait unless I feel bad then contact her. Well, I don't feel perfect now and she kind of dismissed this. I can always tell when I am a bit off. I have reflux, and I get my left side pain (which happens whenever I go hyper) My lymph nodes on my left side always seem to swell. I had the flu a few weeks ago and she said it was probably due to that. However, I told her I know my body and I know when I feel like I am going hyper. I frequent to the bathroom, and I lost weight rather more quickly (I am 52 and well into menopause). Not a bad weight I am 134lb at 5'5". I also workout 4-5 days a week. I find working out helps me greatly to feel better. I also have been trying to eat home and cook healthy as much as possible. Dairy kills me so I have it only rarely now which was a difficult change for me.
In October blood test my B12 was high (1284) and my Vitamin D was 45.2 (I like the D to be higher in the 60's so I am taking a bit more D). The new Dr. did not feel it necessary to take my vitamin levels. Just told me to reduce my B12 vitamin it's too high and said my D is good. My previous Dr who works with professional athletes said its okay for my B12 to be on the high side. So confused since one says one thing and the other says to lower it. My last Dr also told me I would feel my best if my TSH was around a 1 which I am below.
Any advise for this?
Today's Results:
TSH - 0.656 uIU/mL (Normal range 0.270 - 4.200 uIU/mL)
As you have Hashi's, your doctor is right, you will never be able to come off your thyroid hormone replacement. Hashi's destroys the thyroid so you end up entirely dependant of exogenous hormone.
B12 is water soluble, so any excess is excreted and not a problem - except that you are paying for very expensive pee! But that's not a reason to stop it entirely because your level will probably just drop again. High B12 is only a problem if you're not taking B12 supplements, because it means there's something wrong that is causing it. So, I'd just reduce my dose, if I were you.
T3 Total (T3 U[take and FTI) - 91 ng/dL (Normal 80-200 ng/dL)
This is the wrong test. It is out-dated and doesn't give you any useful information. What you need is Free T3 (FT3) because that is what is available for the body to use.
As your FT4 is only 60% through the range, you do have room to try an increase, if you feel the need.
My last Dr also told me I would feel my best if my TSH was around a 1 which I am below.
Typical doctor! TSH doesn't make you feel anything. It doesn't cause symptoms of any kind. It is just a vague guide to thyroid hormone levels but not very reliable once it goes under 1.
TSH has an inverse relationship to the thyroid hormones. Basically when they are high, it is low, when they are low, it is high. But it doesn't always work perfectly. So, TSH is not the most important number and shouldn't be used to dose by. It's the FT3 the most important number, and you haven't got that. But, it's a sure bet that your FT3 is going to be lower percentage-wise than the FT4, so you're in no way over-medicated. The question is: how much lower? How well do you convert?
thank you for your reply and helpful information! I do not understand why doctors do not give the correct and most updated tests. She talked down to me in the office a bit and gave me a biology lesson on the how it all stems from the hypothalamus to the pituitary to the thyroid (TSH) to the T3, T4 and never take into account how it all makes me feel and what I can do to feel good each day. They don’t understand and almost dismiss complaints as it all being in my head. I will definitely request the Free T3 next test. I will not wait 6 months that’s for sure! Thanks again!
Sounds like she was pretending to know more than she does! And talking down to people is a way of disguising ignorance. It's a tactic they all use - don't be taken in by it!
They actually have no idea how it all makes one feel because they never listen to their patients. And they tell you it's all in your head because they haven't a clue what to do about it, so blaming the patient exempts them from a situation they don't understand and can't control.
And as for T3, they don't know what it is or what it does so whatever test they do they wouldn't understand the results. It just looks impressive and gets you to spend more money on tests!
I forgot to mention. The new Dr mentioned at the appointment my weight was how they decide my dosage of medication. She said I was at a high dose for my weight (134 Lbs) . I never heard that before, yet she didn’t change my dosage at all which is a red flag to me on her knowledge of thyroid disorders. I was always informed it was my blood results. I am on Synthroid 0.112 mg (112 mcg). At my consultation she said she would have prescribed me around 100 mcg. Thank you!
She doesn't know very much, does she. This dosing by weight malarky is just another ruse to under-medicate us.
It started out as a means of estimating the initial dose for people having thyroidectomies - they had to have some basis for calculating the dose - and then the dose was titrated according to need, up or down - more usually up, I should imagine -using blood tests.
Then some bright spark decided that was a good way to decide a dose for all hypos - although to begin with it was only supposed to be a rough guide. But, like all rough guides - ranges, for example - doctors with blinkers took it literally and now no-one knows where they are, from what I can gather. Titrating doses according to need seems to be too complicated for the poor darlings, so they jump on any sort of formula they can to make life easier.
The important thing to remember is that when you're hypo, you need what you need and we're all different. It would be unbelievable if all hypos of 85.24 kilos needed exactly the same dose, wouldn't it? We're not machines where you put in x amount of flour and get a loaf of bread the same size every time. But, doctors don't seem to have the wit to work that out - or maybe it's the will that is missing!
Next time someone tells you it is all in your head, just reply that your thyroid is in your neck, not your head. I nearly got thrown out of a GP appointment when I said this, but it showed I was not to be messed with!
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