This is my first time I’m posting on this forum. I had Graves’ disease was on carbimozle. 2017 diagnosed. Relapsed 2021. I had my full thyroidectomy nearly 8 weeks ago. After my surgery I had tingling sensation on my face and arms within 10 hours of the surgery whilst in hospital. Was given Calcichew to take three times a day so 3000mg. 3 days after my surgery my right arm completely lost muscle movement and had tingling sensations on my jaw line & in my limbs. I was so scared that I had a stroke the feeling was scary. I remembered the card the nurse gave me to follow for hypocalcaemia so started to take the calcium tablets 2 every 20 mins, 3 times. Being a weekend contacted the out of hours doctors they said they can’t do nothing to go straight to A & E. After 6 hours in A & E the the doctor there said they can’t do anything until an endocrinologist is available which was the following morning to wait in the hospital in the waiting room. They only took my bloods & said i needed to stay in the emergency waiting room to continue taking my calcichew. I discharged myself cause I was in so much pain from the surgery wanted to be in my own comfort of my home & my limbs sensation were better. I didn’t want to take co-co-codomol they gave on empty stomach but the doctors said it was ok to. I didn’t cause I knew I would be even more poorly & be sick.
On the Monday the Surgeon who done my surgery contacted me 21.30 & said that my levels were very low to increase calcichew another dose it may be that he bruised the parathyroid gland during the total thyroidectomy.
That all happen & yesterday was my 8 weeks follow up.
During this consultation with the Surgeon I felt he wasn’t compassionate at all as I wanted to know exactly what the reading meant. Apparently my most recent readings of blood showed levels which were high. I asked him to explain what the levels meant the surgeon just said if I continue taking high dose of Levothyroxine it’s putting a strain on my heart & Brain. Levels were 9 & 19.1. Don’t know what this means.
I explained I put on 11 pounds since the surgery, last 4 days can’t tolerate the heat in my body & I’m constipated.
He was laughing & said the Levothyroxine must be reduced to 75mg as 100mg is too much for my body.
Please can someone advise me & guide me if you experienced the same.
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Rum9
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which brand of levothyroxine are you currently taking
Have you been careful to only take calcium supplements at least 4 hours away from taking levothyroxine
It can take some months to fine tune dose levothyroxine and very important to maintain good vitamin D, folate, B12 and ferritin levels as well
You are legally entitled to printed copies of your blood test results and ranges.
Were most recent blood tests done via GP or at hospital
Can be more difficult to get results from hospital, contact endocrinologist secretary
Tests via GP are easier
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 some GP surgeries still 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.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with Graves’ disease
Do you have any vitamin results from BEFORE thyroidectomy
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
List of private testing options and money off codes
Thank you so much for taking your time & providing me very useful information which is helpful for me. The brand of I was given by the hospital is Levothyroxine Aristo 100mg. Last two days I’m on 75mg the brand is MercuryPharma.
I have requested my blood test results from the surgeons secretary three days ago & still haven’t got my results.
I went to my GP yesterday they checked my records & last blood test records they had was May 2023. The hospital blood test report done from July-September has not been given to my GP. The receptionist was shocked that they had no record of my full thyroidectomy too. I was advised i need to contact the Secretary of the surgeon.
I provided the receptionist with the after care letters I got from the hospital & prescription they gave after my surgery. I was told by the nurses who contacted me for my tablets, I needed to collect my prescription for Levothyroxine & Calcium from the hospital pharmacy only no other pharmacy.
I regimentally take my Levothyroxine 7am in the morning. Calcium at 12.00 in the afternoon Then 7pm again.
My GP has me on vitamin D iv always been deficient so 1000, Iu daily.
I have considered going to see a private endro & requested my GP for referral. I’m not sure if it’s possible but I do prefer to have the Relevant vitamins as IV treatment this is something il be asking the doctors in the private clinic.
My GP has booked an appointment to see me on the 4th October.
Understanding the levels of TSH will be helpful. Some of the medical jargon used are new to me.
Being graves iv always known my levels to be high.
Apparently my most recent readings of blood showed levels which were high. I asked him to explain what the levels meant the surgeon just said if I continue taking high dose of Levothyroxine it’s putting a strain on my heart & Brain. Levels were 9 & 19.1. Don’t know what this means.
I explained I put on 11 pounds since the surgery, last 4 days can’t tolerate the heat in my body & I’m constipated.
How old are you and approximately how much do you weigh in kilo
Magnesium citrate can help improve constipation
Best taken afternoon or evening at least 4 hours away from levothyroxine
Calm vitality magnesium powder is cheap and easy to use. Start on low dose and increase until you get desired results, too much can cause diarrhoea
Magnesium important for bone health too, and recommended when supplementing vitamin D
Are you currently taking vitamin D. When was vitamin D last tested
Hello Rum9,I have Graves disease and had a thyroidectomy last June.I have documented my whole experience from start up to present day on my profile( including thyroidectomy experience)If you would like to read it just click on the picture at the side of my name and there it is.If you have any specific questions and I can help at all,that would be OK.Best wishes to you.
“Apparently my most recent readings of blood showed levels which were high”
Based on what information? Obtain the results & see exactly how high your results are. Many doctors go by the TSH (Thyroid stimulating hormone) which is a pituitary hormone with signal thyroid to increase or decrease. If it’s low doctors assume thyroid levels are high, but it’s unreliable and if you have previously been hyper it’s can remain inaccurate.
Was your FT4 & FT3 actually tested? These are the actual thyroid hormones. FT4 is replaced with Levo (LT4) and your body converts what is needs to FT3 the active thyroid hormone. It might be FT4 is not low but FT3 is.
Optimal nutrients help with this. Have folate, ferritin, B12 & vitamin; D tested?
Well he doesn't sound like a pleasant individual! Are you allocated an endocrine nurse that you can contact? I realise that clinics do things differently but after my demi thyroidectomy for a suspicious nodule it was mostly an endo nurse that I saw till I was discharged. She advised on wound care and blood test results and was easily contactable by phone.
I was unable to tolerate my prescribed dose of levo so had to start very slowly splitting a 25mcg tablet into tiny pieces only taking one tiny piece each day. I've built up very gradually over the year since my surgery and now am on 62.5mcg but still titrating upwards.
You have not long had surgery and it will take time for everything to settle down. There are other forum members that have had a thyroidectomy for Graves disease so hopefully they will see your post and make suggestions that can help.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
The thyroid is a major gland and responsible for full body synchronisation which includes your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
It is essential that you are dosed and monitored of your Free T3 and Free T4 readings and not a TSH seen in isolation -
so we need to see these 3 readings taken from the same blood draw.
Surgeon's aren't known for their bedside manner and prefer their patients unconscious - and you need an endocrinologist to help you find your best treatment option of thyroid hormone replacement.
As above you can see that thyroid mostly produces T4 - for which your are prescribe Levothyroxine.
Levothyroxine is a prohormone and needs to be converted in your gut, into T3 the active hormone that runs all your bodily functions and said to be around 4 times more powerful than T4.
In order for T4 to convert well, in the body into T3, we need optimal levels of ferritin, folate, B12 and vitamin D -
so we need to know where these readings are and can advise accordingly.
The trace elements of T1 and T2 are not considered worth replacing and you have been prescribed calcium for the obvious lack of calcitonin and T3 - Liothyronine - may or may not be necessary - as it is much too early in your recovery to know this.
Obviously in order to say anything of any value we need to see a blood test to include the above details - a TSH, Free T3, Free T4 + the vitamins and minerals and inflammation and thyroid antibodies are run as a given when running a full thyroid blood panel.
Check the PIL - Patient Information Leaflets as I think both Co-codamol and Calcichew can cause constipation so maybe consider a suppository until things settle down, have you spoken to your doctor ?
Have you seen an endocrinologist since surgery - if not when is your first appointment ?
I'm with Graves but post RAI thyroid ablation back in 2004 - press the icon alongside my name to you if you wish to read my Profile Page and everything I have ever written on this forum.
Thank you so much. My appointment with endro was for 26th September now they have changed it to 15th December. A long wait. So no actual endro doctors have discussed nor seen me since my surgery. Had my surgery on 3rd August.
Iv requested for my recent blood test results. I know the recent blood test was a full blood test I was told by the nurse who took my blood.
I stopped taking Co-codomol 3 weeks after the surgery as I was able to tolerate the pain. Calcium I’m still taking but this has been reduced to 500mg a day one tablet only.
Indeed, the surgeon who operated on me certainly didn’t have any bedside manner & prefers his patients unconscious. The hospital room I was in was with 5 other patient & very crowded with nurses & doctors, I was shocked on the day. When I mentioned to the surgeon iv never seen such crowd even when I had my c section with my childrens, he laughed saying it’s like a production line in a factory! 😲
Are you still having to have your prescriptions dispensed from the hospital - is this convenient for you - I don't understand why your surgery can't support you locally.
Your endo appointment has been delayed by another 2 months - so presume your doctor is responsible for managing your thyroid hormone replacement -
When you get these results please start new post with the results and ranges so we all get to see what has been tested and advise accordingly.
Alternatively arrange your own full thyroid blood test run and share with us all the results and ranges and we will advise on our next best steps back to better health.
If you go into Thyroid uk - the charity who supports this forum - thyroiduk.org there is a page detailing Private blood companies - between them I understand Blue Horizon and Medichecks - offer a nurse home visit to daw your blood - at an additional cost - which I find the least stressful option -
You need a full thyroid blood test - it is around 10 blood tests and usually referred to as an Advanced / Ultra Thyroid full blood test, to cover TSH , Free T3, Free T4, antibodies, inflammation, and ferritin, folate, B12 and vitamin D.
Make an appointment for a Monday/Tuesday and you'll have your results back by the weekend - stop any supplements the week before - so we measure what your body is holding rather than what you are taking -
Make an early morning appointment - by 9.00am - fast overnight just taking in water and do not take your T4 until after the blood draw - do not worry - you will be ok.
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