I came off Carbimazole around 2 weeks ago. I was on 5mg daily for over a year but want to try for a baby so my doctor said I could just stop this.
I have heart palpitations (never went away) and I seem to be spotting heavier during ovulation (normal to spot a little for me at this time and has previously been checked). My partner also says he thinks I’m much more irritable - or maybe he’s just more annoying?
Has anyone else had any symptoms coming off? Google was no help 🙄.
Thanks!
Sophie
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I am not sure you should simply come off Carbimazole. Does your doctor know what he is doing? There is another medication that people use when trying to conceive and I am having a blank moment as cannot remember the name. Whatever, you still need something if you are hyper. My friend’s daughter has had three pregnancies, all fine babies, while taking it. I think you need to see someone who specialises in pregnancy with over active thyroid.
My doctor didn’t have a clue about my medication or stopping it for a child. Although he seems fairly junior he did discuss this with my consultant and apparently I’m fine to come off this as I’ve been taking for about 14-16 months.
You need to start taking responsibility for what happens to you and any baby, as thyroid patients are poorly treated in many ways and most doctors know very little. Read up about it and ask questions and at the very least ask for an appointment with an endocrinologist who is trained in pregnancy. Sorry to be blunt but you cannot just sit back and expect them to look after you. You should be well cared for and I hope you are but learn all you can and take care of yourself as much as possible.
Please contact Reception and ask for your test results with ranges for the last two years. They are legally yours. Surgeries should have on-line access - so worth asking. You can then begin to understand your results by posting them here in a new post - and asking questions.
Good levels of B12 - Folate - Ferritin - VitD are needed for both you and the health of a baby. Have they been tested ? Which anti-bodies were tested to confirm your condition ?
I think you need to see what your levels were before you stopped taking Carbimazole and what they are now. I took PTU or Propylthiouracil and I did stop it cold turkey because my Endocrinologist was useless and had overdosed me so I was underactive. You should not be taking either of those drugs if you are trying for a baby. Also I'm afraid if you get pregnant and your levels are unstable that can be very difficult as well. Do you have any results to share with us? Just to add you need to be under a Consultant who deals with women who have thyroid disease and are trying to become pregnant.
I am going to change what I just said about PTU because I just looked on Elaine Moore's site and it can be taken during pregnancy according to her.
You can't just " come off Carbimazole " - this is an anti thyroid drug which was prescribed for a reason - hyperthyroidism - and if this underlying health issue hasn't rectified itself - this is not recommended.
What were you diagnosed with to have been prescribed Carbimazole ?
Has this situation resolved without the medication - sounds like it hasn't - hyperthyroidism can be life threatening if left untreated.
I don't understand the full implications of being hyperthyroid and considering pregnancy but I don't think " it's a walk in the park " and it needs to be monitored very closely for both your potential health issues and the safety of your baby.
Should you wish to learn more about thyroid health issues you might like to check out the Thyroid uk website as this is the charity who support this amazing forum.
Hopefully more members will reply to your post, some of whom might have been in a similar situation.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Frequently only TSH is tested
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease and Hashimoto’s
Ask GP to test vitamin levels alongside TSH, Ft4 and Ft3
Before considering TTC you need all four vitamins optimal
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for the detailed response, it’s appreciated. I’ll post my results when I hopefully get them over the next few days.
How often should I be being tested for these things?
I have Graves Disease and know I have had TSH, FT4 and FT3 tested with the latter being the problem, though I don’t know what that means. Will post results in more detail later.
I’ve never had B12 or vitamin D levels checked but have been anaemic for years and this is checked (inconsistently) and I have taken supplements for this.
Thanks for the advice. I have an appointment with my doctor this morning and will be asking for the things you’ve mentioned. I always knew this wasn’t given too much attention but wasn’t aware of how badly they were monitoring/looking after me until now - Which makes me a bit angry to be honest!
For those asking, I had the antibody test and though it wasn’t conclusive they have noted Graves’ Disease as the cause of my over active thyroid.
You need to see which anti-bodies were tested as we see often here that people are wrongly diagnosed and incorrectly treated. SlowDragon will not have seen your Reply as you inadvertently forgot to click the blue Reply button. Don't forget to ask for copies of your test results .... Hope all goes well.
I'm sorry but that's not really good enough - the antibodies unique to Graves Disease are either or both TSI ( roughly translated as a thyroid stimulating ) and TR ab ( roughly translated as a thyroid blocking ) antibody and if these haven't been tested and proved positive and over range you should not have been prescribed the anti thyroid medication.
Your first step must be to get hold of the medical evidence that would have been run on which a diagnosis is made and the appropriate drug prescribed.
Graves is an auto immune disease and as such, it's for life, as it's in your blood and DNA.
Loosing a major gland, your thyroid to this disease may just only complicate matters.
I have Graves and went through RAI thyroid ablation in 2005 and have been vey unwell because of this treatment. I now self medicate buying my own full spectrum thyroid hormone replacement as the NHS have refused me the most appropriate thyroid hormone replacement for me, and I now manage lingering Graves, thyroid eye disease and hypothyroidism.
Routinely after a thyroidectomy or RAI ablation the NHS only prescribe T4 thyroid hormone replacement and this does not necessarily solve, but may possibly compound your health issues, and the only other option readily available through the NHS is anti depressants.
If you do have Graves Disease the most well rounded all encompassing website other than here, is the Elaine Moore Graves Disease Foundation. Elaine has Graves and set about researching this poorly understood and badly treated AI disease herself when she found no help with her continued ill health, after medical mainstream had no answers for her.
If you have confirmed Graves the NHS gives carbimazole treatment for around 18 months with the aim Graves will go into remission.
But this should be carefully managed with regular (eg 6 weekly) review of your levels. Some start taking 2.5mg per day (or 5mg alternate days) to see how stable they stay before stopping.
If your antibodies were not conclusive they may have either had the wrong antibodies tested, or your hyperthyroidism may temporary ultimately becoming hypothyroid. There are also non autoimmune causes which do not alter or go into remission.
Should you relapse the NHS first option is Radioactive iodine treatment (RAI), but as you are planning to conceive this wouldn’t be suitable and a total thyroidectomy (TT) will be an option.
Propylthiouracil (PTU) is the drug used during pregnancy, it is considered safer, but being either hyper or treated with PTU whilst pregnant is not totally risk free.
First step is to get blood result history, see what your levels are and what has and hasn’t been tested.
Do not, whatever you do, agree to a Thyroidectomy. I am banging the drum hard here because it is the worst thing I ever agreed to do in my entire long life. Try absolutely everything before you agree to lose your thyroid.
You have now received more good advice and can start to question your doctor or endocrinologist and be well informed and cautious about their advice. Read everything you can until you understand everything and be prepared to challenge your doctors if you are not sure of the route they are suggesting. Nevertheless do not be too anxious as I told you in my first post that I know someone who has had three babies, all on PTU without any problem and since then, unbelievably, she is no longer hyperactive. It is like a miracle for her.
I’ve requested all of my bloods to be redone. The doctor said he won’t blindly make a call on the next steps and will speak to my previous consultant - I have had a second since September and from the sound of the call this morning, he doesn’t think he made the right call. It’s not helped that I’ve not had a consistent doctor since corona happened.
I’ve requested all my previous test details so will be able to understand in more detail.
I do not want to go down the route of having my thyroid removed at all. Hennerton why do you think this was the worst thing you agreed to, what impact had this had?
Doctors will tell you that after thyroidectomy, you just take a little white pill every day and you will be fine. Not true and particularly with a Graves’ patient. You may be fine for a few years but eventually the loss of such an important organ catches up on the body. I suffered innumerable peculiar illnesses and conditions that I had never had in my life before thyroidectomy. After six years a client told me about T3 the most important hormone, that does all the work. T4 Simply gets converted to T3 in the body but people without a thyroid do not necessarily do this very easily. They need to take T3 as a pill, just like T4. The issue across the world is getting a doctor to prescribe it because for some strange reason, known only to doctors, they do not believe we need it and so refuse to endorse it and in fact the NHS has blacklisted, as it is very expensive. There is much more to this sorry tale but I will bore everybody here and they will soon be asleep over their laptops. You can look into it yourself and then you will know how hard you will fight to keep your thyroid.
I am lucky, as the NHS does prescribe it to me but I am always in fear of it being taken away from me. It is a life saver but still I am not the person I used to be.
My previous post was to advise the standard treatment course offered by the NHS. I was not suggesting a Thyroidectomy would be the best option.
I myself have a hyper nodule and have declined RAI after doctors arranged a referral for the treatment. I can remain on antithyroid but starting a family is not a factor for me.
You need a look at your history and gather information to make an informed choice on your own treatment.
Interventions often results in hypothyroidism, which medics view as easily managed. As you can gather from posts on this forum many struggle to be well and are improperly managed by doctors.
Specialists treat hyper conditions, hypos are discharged for GPs to manage. It would seem you haven’t received very consistent care. This is only more common with Covid chaos.
Usually you just need to show ID to your reception and you can register to view your tests results online.
I was recently started on 20mg Carbimzole but not had the extra tests yet for those antibody tests, and we are also planning a baby in the next few years. I think you have done the right think to liase with your doc before planning. My GP just gave me this med a few days ago and told me to tell the endocrinologist about planning a baby in the next few years (As I will be 35 next year already) I will be speaking to someone on Thurday, I guess if it can be controlled in a year that could work out. I feel they really should be helpful in this situation as the years can go by fast and you don't want to leave planning a baby near 40. As you have been on this med already over a year I guess you really need to check with them why your thyroid is still affected, and what steps can be done to help you plan pregnancy.
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