I was diagnosed hyperthyroid about a year ago. Started on 40mg carbimazole ( had every side effect going) have had meds reduced down to 10mg a day for about 3 months.I am concerned that from last month my tsh was 0.02 and has jumped up quickly!
I have put on a lot of weight and don't want to be over medicated!
Feel fine apart from an enlarged goiter.
This is an email I had today from my endocrinologist after asking him what am I actually being treated for. My first appointment with him about 6 months ago he said ' I think you may have graves' but now I still don't know what it is I actually have.
I just really want to stop the medication now but will the hyperthyroid symptoms return?
My original symptoms were weight loss and a high pulse which was picked up on a routine check. Never felt ill until on the meds!!
Written by
Sierra1969
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A - your results don’t show Graves. I’m not convinced. (Yet)
The doctor ?notes? you’ve attached say TRab are negative and either a positive Trab or TSI confirms Graves. There are other reason for hyper.
You may have had hyper level initially with low TSH - High FT4 & FT3 but your current TSH is quite high for someone recovering from hyper and the FT4 & FT3 look low.
Drs are happy when TSH is in range. The FT4 & FT3 *by most ranges* are rather low. They are *not* good as the notes imply. We would need exact range to be sure.
Can you find out the lab ranges?
I believe your carbimazole should be further reduced possibly stopped depending on how low your FT4 & FT3 are.
You may have early stage autoimmune Hashimoto’s which cause transient rises preceding to low function. This requires TPO & TG antibody testing - has that been tested.
Obtain copy of ultrasounds report, you need to know if any comments were made about echo texture & vascularity. Ultrasound scan don’t plot function of thyroid this it what a nuclear uptake or tracer type CT scan will do.
are you saying these were your results 5 weeks ago -
TSH 2.32,
FT4 8.6,(range of 7.9-20) 5.79%
FT3 4.7 (range of 4-6.6) 26.92%
Then you changed from 10mg to 5mg carbimazole & the recent results were:
TSH 0.02 ( range of 0.38-5.33)
FT4 11.00 ( range of 7.9-20) 25.62%
FT3 6.1 ( range of 4-6.6) 80.77%
It’s important to take medication as consistently as possible. I use a pill organiser & used to set alarms on a pill reminder app. Im in the habit of remembering now. Retesting should be 6 weeks after a dose adjustment, the levels are not settled until that time.
Assuming the range is same for both test (which might not be case, even if arranged by same location)
Your first set of results show low levels with FT4 at 5% and FT3 at 26%. Lowering the carbimazole correct as allowed level to rise, so your level are now FT4 25% and FT3 80%.
Your results are unusual in that the FT3 is disproportionately high. Meaning it’s now top part of range when FT4 very low in range. Usually they are more balanced with FT3 being 10-15% lower than FT4.
If this doesn’t balance out over time & causes symptoms there is a medication method called block & replace. Higher dose of carbimazole to block all function than a replacement Levothyroxine to restore levels.
How much selenium, vitamin D and B12 do you take. Is it only B12 or a b complex? Supplements containing biotin can interfere with blood tests.
No the results are the other way round, a month ago it was Tsh 0.02 this month Tsh 2.32 and was only taking 5mg not 10mg like he asked me to as feel rubbish in myself on anything over 5mg.Vit D 4000iu
lowering carbimazole usually allows levels to rise. Did you stay on 5mg, or reduce it further? Your levels might be naturally dropping & carbimazole will cause you to go hypothyroid.
I think it might be worth doing your own complete private test, which can be done by private finger prick sample via online order & posting sample back. Results usually available quickly.
See list of companies offering different tests some have discounts available (Medichecks advanced thyroid might be good option - included TSH, FT4, FT3, Thyroid antibodies TPO & TG, key nutrients Folate, ferritin, B12 & vitamin D & CRP Inflammation marker) Discount codes on link.
There is an alternative AT drug - Propylthiouracil - PTU for short and ease of speech :
Maybe it's worth trying this as Carbimazole does not suit everyone ?
So currently your results are with the TSH at 2.32 - showing very low T4 and midway T3 - and presume you have been advised to reduce the AT drug further as now you are at risk of falling too far through the ranges and becoming hypothyroid ?
When metabolism is running too fast or too slow - hyper or hypo - it becomes difficult for the bod to extract key nutrients through food and your core strength vitamins and minerals can nose dive through the ranges causing additional health issues.
It would be sensible to get your ferritin, folate, B12 and vitamin D run and we need these up and maintained at optimal levels.
I now aim for a ferritin at around 100 : folate at around 20 : active B12 75++ ( serum B12 500 ++ ) and vitamin D at around 100.
All the anti thyroid drug, Carbimazole, is ' play for time ' and block your own daily output of thyroid hormones and your presumed high levels of T3 and T4 at diagnosis will slowly fall back down into range with your symptoms hopefully relieved.
Since you results appear negetive for Graves Disease -
What has been said about the goitre - as this could have caused symptoms ?
Depending on the size, the underlaying reason for the goitre and your trying to manage symptoms expressed - you have these options available :
Blocking thyroid hormones by taking an AT drug such as Carbimazole or PTU :
Increasing thyroid hormones - by taking T4 medication.
and then there could be the option of Block and Replace -
which involves taking both the above so you do not fall too far into hypothyroidism - which is equally disabling to live with and manage for some people.
Otherwise I guess you are looking at a thyroidectomy, but living without a thyroid is not an easy fix and the thyroid likened to the body's engine so, if, you can, I'd try and keep my thyroid.
I lost my thyroid to a diagnosis of Graves and had RAI thyroid ablation back in 2005 - and deeply regret this treatment option and wonder why no, knowing what we know, this is still a first line n option in some health care settings.
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