That is quite a drop in a matter of weeks. 30mg is a moderate dose. Initially the drop was slight but now you are very low.
Your instinct might say stop completely bit the problem with stopping is if your hyper is continuous it could “take off” again and stopping and starting carbimazole is not ideal.
Ask GP to agree to maintaining a 5mg dose this might show if you levels are dropping further or if you need to increase again a few weeks later.
What really should have happened of antibody testing at the time of diagnosis. Then you would know if you dealing with thyroiditis or Graves. I’ve heard of others insisting on TSI / TRab confirmation prior to starting carbimazole.
Thank you PurpleNails. I will call GP now, but for me as you saud, is more logical to test TSI/Trab. I was asking for these but unfortunately only endo can do those. Which is again mind boggling. If my thyroid is over a hick up , even 5mg might further bring her to sleep.
It’s possible for the endo to request the blood test, send you (or GP practice the form) and you arrange draw at practice. Or walk-in center or hospital.
This has often been done at many hospitals. I think you have argument for something to be arranged. Yours levels having dropped and you question if on right treatment.
I was sent pre-clinic forms in this manner but practice wouldn’t let me book test until I had appointment arranged. The team were waiting for results first so just make sure everyone clear on who’s supposed to be doing what. Probably best to assume no-one will action anything until you follow up and make sure!
Thank you PurpleNails. You really held my hand with this. I spoke with a GP straight away. He agreed to reduce even to 5mg or stop if I want. He only said they want to closely monitor of course. I am on 5mg now as that felt good amount when checking in. I am seeing my GP face to face on Monday and I feel confident she with "fight" for this tests to be granted in this situation.
Your GP does sound good at monitoring you, so that’s great. So many of us get abandoned by both GP & endocrinologist, which is bewildering.
Your Thyroglobulin is high, this can be elevated in many thyroid conditions. It’s a protein usually stored in the thyroid gland but is broken down to release the thyroid hormones T4 (thyroxine) and T3 (triidothyronine) when needed.
When the immune system creates TG antibodies it’s mistakenly attacking thyroglobulin, yours are in range.
Your TPO however is elevated. (Positive) so that that does confirm an autoimmune condition is occurring.
Medichecks does offer a Graves antibody test. It’s £100 (before any discount) and you must have venous draw. (Can’t be done by finger prick)
It’s names has merged TSI & TRab. TRab measures blocking, neutral & stimulating antibodies whereas TSI measures stimulating only. So the test name is confusing but I believe it’s Trab not TSI. (both are biomarkers for Graves)
Also, don’t worry about you thyroid “being sent to sleep ”. carbimazole doesn’t shut down the thyroid in that way. While you take carbimazole it temporarily alters the way the body can use iodine. This has the action of inhibiting formation of new thyroid hormones.
Sadly I do realise many of you don’t have this kind of GP support. But I witness and experience great community and selfless support. It’s like a training ground where we get our voice regarding thyroid health. In 1999 I nearly died when in the A&E the nurse brushed me off to the waiting area even I was showing her the red spots on my arms accompanied by flu like symptoms and body aches. I told him I am not a princess that complains for little body aches. I know pain from over working the body. This pain was different , very strong and the energy was moving fast. I had bacterial meningitis with septicaemia. I nearly lost my right leg to gangrene! In 6 hours one dies if not treated. I was called a miracle to be alive after 12hours.
Because I looked fit, I was not taken seriously. Since then I make sure to get informed and be heard.
After my incident the walls of A&E were covered with posters how to recognise the symptoms of meningitis.
I know my case was the reason for this and I was glad.
I read too many times of this sort of thing & had it happen in my family, my eldest child has a heart condition which wasn’t detected for several months, we just kept getting sent away. One doctor basically suggested I wasn’t bothering to feed baby. When my second baby seemed Ill doctors just said I was over anxious mum as my first baby had been so poorly & suggested her straining appearance was constipation but we pushed and discovered she had a even rarer variant on the same heart condition her sibling had and meningitis too, both conditions diagnosed on same day at a 1 week old & she had open heart surgery at 2 weeks.
My own thyroid condition went undetected many years although I had abnormal test I was never informed about.
While most doctors I see are good, getting an appointment or being on waiting months on a waitlist means I don’t see many and Im quite distrustful that the right things are processed / read correctly and followed up. Often reading later on notes “normal, (no further action) patient informed”. When results are not normal, theres further things to be done and no the patient wasn’t informed of anything
I am so sorry you were routinely dismissed and your girls suffered too. I feel for you and with you. I hope your daughters are doing well now .Yes I feel like a hawk reading my test results (and my son’s) and wondering when will one doctor say “ok it reads normal but…” until then I am grateful I am resourceful and there are alternative medicines to support and heal the root of some of the conditions arising.
There are 2 auto immune diseases that can have caused your recent health issue.
Both Hashimoto's and Graves's start with a ' hyperactive ' phase and the only way to tell them apart, is to have a medical evidence of which antibodies were over range and positive and this could have been from your initial first blood test.
For Graves we are looking for either a TSI ( a thyroid stimulating ) or TRab ( a thyroid receptor blocking ) antibody - and for Hashimoto's the antibodies are generally expressed as TPO or Tgab.
Graves Disease is continuous high and building T3 and T4 readings. and considered life threatening and an anti thyroid drug is prescribed to block the T3 and T4 rising any higher.
Whilst with Hashimoto's the T3 and T4 do not continue building and drop back down into range automatically and do medication is prescribed.
So first and foremost you need to know which disease you are dealing with :
Your latest results are very low and the AT medication needs titrating down to allow some thyroid hormone production of your own, however it is very early days and if your Graves antibodies are raging there is the risk of ' taking off ' again.
I believe high serum C reactive protein is produced in the liver in response to inflammation and which your body clearly is at this phase of the disease.
There is an alternative AT drug - PTU ( propylthiouracil) is this inflammation has been compounded by the Carbimazole.
What symptoms originally took you to the doctors and have these been relieved and do you have any issues with your eyes being dry though watering or feeling gritty and maybe light sensitive ?
Monday is not that far off - so rest, start reading up a bit, if able, and start making some notes on what questions you need answering.
I would ask that you get your ferritin, folate, B12 and vitamin D run as these core strength vitamins and minerals need to be maintained at optimal levels and when metabolism isn't running well, either too fast or too slow, these can nose dive through the ranges and simply compound your health issues further.
Thank you pennyannie I have been taking notes here (keeping my Thyroid diary too) and working closely with my GP since day one 6th of June. All this with the help of the well of information and support in this forum, you included
I have done both Thyroid peroxidase Abs and Thyroglobulin Antibodies tests, as these my GP can order. I have a post about these results.
The point is that I have not been tested for TSI and TRab as these are only done with endocrinologist appointment which is on 28th of September.
I was well advised by PurpleNails to demand this tests now as I have a good argument of sudden big drop of T4 and T3, and being overmedicated and possibly on a wrong therapy all together. I would not know this until TSI and Trab tests.
A GP called me on Thursday straight away. He agreed to reduce and even if I feel stop the medication. He only said we have to closely monitor my bloods and have regular testing which is on the cards anyways. I reduced my medication. Seeing my usual GP face to face Monday and I am sure she will get on the "fight" with me to get these tests approved by endo.
The symptoms I had are now subsided. My eyes were and are fine. I am back on my bicycle and swimming again! I was in bed almost all of June. Not able to stand up for even 5min. Heart racing, sweats, dizziness, loss of weight, headaches, nausea, joint and muscle aches, regular toilet runs...
Keeping an eye on all the minerals and vitamins needed :)My GP tested on for those on day one and she is aware we should keep and eye on those. Had a separate post here about optimizing them and I got amazing support and guidance already.
I am beyond grateful to this forum and all of you that I can now recognise giving such consistent support.
Glad to read you are feeling better and hopefully your doctor on Monday will be able to resolve any outstanding issues -
Please do not overdo the exercise - you may feel like it, but you are only just coming off from the AT drugs and have been on ' auto pilot " and your T3 and T4 are not yet stable nor consistent day on day, and we've all experienced ' the payback ' from overexertion.
Definitely ask for antibody tests LilyBloom. I was initially diagnosed with Graves, but was encouraged by forum members to test antibodies privately and results show that I have Hashimotos (underactive thyroid), although I do have thyroid eye disease (TED), which is more common with hyperthyroidism.
What a mystery these bodies. I hope you are doing well and you are settled with good therapy. Did you do TSI and TRab privately? I was looking to medichecks but it is not clear to me that they test for TSI and Trab too. My GP already tested me for TRO and Tgab which show if one has Hashimoto ...or maybe Graves. How were you diagnosed for Graves if you did not have all the tests? Guess work like me?On 4th of July tested
Thyroglobulin antibodies 34.4 IU/ml ranges 20-40
Thyroglobulin 301 ug/L ranges 0.00-0.10 ug/L
Thyroid peroxidase Abs 130 IU/ml ranges 0.00-34
Without the other tests I will not know for sure what is going on.
TPO & TG antibodies are most frequently tested, but are not unique to Graves. To confirm Graves diagnosis you need to test:
TRab or
TSI antibodies
I would ask your GP to test in first instance & if they are not supportive, then look to do so privately.
My Endo diagnosed on symptoms rather than TRab/ TSI, which I can understand as I did appear ‘hyper’ but when I did test several months later via Medichecks, antibodies clearly showed Hashimotos. My Endo now agrees I have Hashimotos (with TED) but is adamant I did originally have Graves.
Thanks 😊I am on it!! GP is very supportive. I have face to face with her on Monday after nearly 2 months once weekly phone check ins and consultations with her. I am sure she will pressure endocrinologist for TSI and TRab, as it’s very evident I need those tests asp to know how to proceed.
I went hypo after about 7 weeks. I started with a higher T4 level than you and was on a lower Carbimazole dosage. So I can see easily see how it happened with you. When I went hypo, my dosage was reduced to a very low dose, but I quickly went hyper again after about a month. So reducing your dosage seems like a good thing to do now, but be sure to get your blood levels tested again in 4-6 weeks' time in case your levels have gone hyper again.
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I have been taking notes here (keeping my Thyroid diary too) and working closely with my GP since day one 6th of June. All this with the help of the well of information and support in this forum, you included 
From Hypo to Hyper... Too much T3 concern
From hypothyroid to hyperthyroid. Is it possible?
From Hypo to Hyper - I know this is not possible so what's going on?
Hyper thyroid 3months later on carbimazole. Blood test 
Heading towards hypothyroidism? 
