I had a total thyroidectomy in November last year and was put on 100 micrograms of Levothyroxine, I saw the consultant last week and he said to try taking alternate days of 100 micrograms of levothyroxine and 75 on the other days.
I have been feeling extremely tired since the op which is why the endo consultant mentioned changing the dosage plus also my TSH is at 0.01 though my T4 is now in the normal range.
I said to him I was worried by my dosage being dropped slightly would this make me gain weight and he didn't comment.
Can anyone share their experiences with me with regards to their medication being decreased? Did you suffer with any problems?
Thank you
Donna
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DonnaT86
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If you post your test results, with reference ranges (they vary from lab to lab), members can comment on whether a dose reduction is appropriate. We need to see
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Ask your GP to test vitamins and FULL Thyroid testing
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I felt better with a dosage drop when my TSH was very low and FT4 was high but everyone is different. You can only try and see what happens. I did not gain any weight with a dose reduction even though my TSH rose to 11 initially until I adjusted it to find the right dose for me.
I have a low carb high (good) fat diet, low sugar, lots of vegetables, walk for half an hour every day and do other exercise for flexibility and strength. Being on too high a dose can make some people gain weight as much as being on too low a dose of levothyroxine because a dose that is too high can make you feel more hungry.
My advice is not to be too neurotic about the dose of levothyroxine but make sure all your vitamin levels are optimal, exercise gently and eat healthily.
Before the TSH test, the dosage for total thyroidectomy was between 200 and 400 mcg per day. Now, doctors just rely on having TSH in range and patients suffer.
Can I just say that a fully functioning working thyroid would be supporting you with a daily dripfeed of approximately 100 T4 + 10 T3.
I believe if there has been a medical intervention and your thyroid has been surgically removed or ablated with radioactive iodine both these vital hormones should be on your prescription.
Some people do well on T4 alone, some people simply stop converting T4 toT3 and some people need both these hormones independently dosed and monitored, to achieve a level of wellness acceptable to the patient.
I read you are with Graves Disease - we have TSI/TRab antibodies that control our TSH so it is vital that you are managed on T3 + T4 blood tests and not the TSH - it is not a true measure of anything and means diddly squat.
You might like some reading material :-
Elaine Moore - Graves Disease A Practical Guide - this American lady has the disease and also runs a very comprehensive website - definitely worth a look -
Barbara S Lougheed - Tired Thyroid - from hyper to hypo to healing - another American lady with the disease - this book amongst other things debunks the over reliance of the TSH for Graves Disease patients -
Dr, Barry Durrant Peatfield - Your Thyroid and How to Keep It Healthy - this English doctor has hypothyroidism and this book is so full of everything we need to know.
We may now not have a thyroid to keep healthy, but do need to compensate for it's lack.
Graves is an autoimmune disease and as such it is for life, it is in your blood, your DNA. It is true that if left untreated, Graves can be life threatening, so now living without a thyroid, we need to make sure we are kept at optimal levels of vitamins, minerals and thyroid hormones.
I have not had my T3 tested but it looks like they are testing it at the end of March as they want to see how the new dosage is working for me and they are also looking to test my Iron and serum etc.
Unfortunately, your doctor is making the mistake that most of them seem to do, and that is to adjust dose according to TSH only, disregarding where in range your actual hormone level lies.
The reduction in dose will lower your FT4 level, which in turn will very likely lower your FT3 level, and this will make you more hypothyroid and more symptomatic and, yes, you may gain weight. Low T3 makes it difficult to lose weight. T3 is the active hormone that every cell in our bodies need.
You need FT3 testing.
You had a total thyroidectomy, you are now thyroidless and are hypothyroid. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Did you have your TT due to cancer? If so I thought than TSH needed to be kept suppressed? Or has that changed?
When you have your next test, we advise:
* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
If you are having an iron panel (as opposed to just Ferritin) then fasting is essential - 12 hours is recommended and nothing to drink except maybe a little water.
* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Thank you so much for all your advice I really appreciate it.
The reason for my thyroid being removed was due it being overactive and the tablets I was taking to try and reduce that just wasn't working effectively enough and caused me alot of problems so they decided the best treatment was to have the whole thyroid out.
I have booked my blood test for first thing in the morning so hopefully the readings will be more accurate.
Im going to stick to taking 100 micrograms of thyroxine as I agree with what you are all saying it sounds like my symptoms will only get worse.
When you talk to your doctor, you might want to re-emphasize how tired you have been feeling, which is a common symptom of hypothyroidism. Also point out that if he is basing the dosage reduction on your TSH test result, he needs to understand that he is treating a patient--a person, a human being--not a laboratory test. You should only agree to a dose reduction if you are being over-medicated. In that case, you would be experiencing symptoms of hyperthyroidiosm and your FT4 probably would be above the top of the range. As SeasideSuzie pointed out, your FT4 isn't even to the half-way point and you are experiencing hypothyroid symptoms. Therefore, you are under-, not over-medicated.
I agree with what others have said, that your FT4 is low in range so if you reduce your levothyroxine dose you are likely to have insufficient thyroid hormone for your body to function well which could contribute to weight gain. I didn't suffer weight gain when I reduced my dose but my FT4 was over the top of the lab range, not low in range so I had more thyroid hormone than I needed.
I have just been told to do the same thing with dosage the same as you and alternate days, it has made me feel lousy so I want to try and get t3 from somewhere so that I can feel better as I haven’t for a long time.
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