Am new here but thought now would be a good time to join and learn even more about my condition. A bit like shutting the stable door once the horse has bolted I guess but I feel I will need support in the coming months.
Briefly, I was diagnosed with graves 9 Yrs ago,
Have been on alot of meds, preds, methotrexate, block & replace (everything)! have had eye lid retraction surgery 2 Yrs ago, double squint surgery last year & finally my consultant considered me as no longer being of child bearing age so they agreed to do a total thyroidectomy 5 days ago.
Currently recovering 🤔 at home after a 3 night stay in hospital, have been released with 125micrograms of levo to take once a day along with adcal-d3 calcium tabs (2 x day).
I still have tingling hands and feet, awful cough & trying to be optimistic about the future as I'm telling myself it has to be better than the past 9 Yrs I've struggled through but I am worried.
I have my 1st bloods booked in on 17th Dec & stitches to be removed 18 Dec, & check up in 4-6 wks (this seems along time to wait) 🤔 have no faith in my endocrine department (due to past exp) to get my medication right, leaving me with low serum vit d levels for over 3 yrs so was wondering if anybody else has had problems with the correct dosage of levo after a TT or how long it took for their bodies to feel 'normal' again?also any tips on healthy eating without a thyroid, dos & don't?
The scar doesn't worry me just the recovery & possible ups & downs still every day due to levels.
Thank you for reading & I look forward to learning alot 😀
Written by
Kimbrost48
To view profiles and participate in discussions please or .
First point....hopefully GP explained that calcium supplements should be minimum 4 hours away from levothyroxine
Which brand of levothyroxine are you currently started on?
Many people find different brands levothyroxine are not interchangeable
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Yes bloods should be retested 6-8 weeks after any dose or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Ask GP to test vitamin levels
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Hi thank you for replying,The hospital didn't advise me about when to take any medication but whilst I was waiting to be discharged I stumbled across something on the net that said not to take calcium together with levo, I double checked this with the nurse & the pharmacy confirmed it, makes it hard as I wake with the tingles & instantly want to take the calcium tablet but have to take the levo 1st which means I have to wait til around 10am before my symptoms get a little bit better.
Did not know I could take the levo at night as the box says morning (I can tell I'm going to learn more here in 5 mins than 9 Yrs at the hosp)!
I have been given 1 box of MercuryPharma levothyroxine 25 microgram tabs & 1 box of Accord levothyroxine 100 microgram tablets (2 strengths to be taken at the same time of 125).
I wish I cld chew the adcal every hour 🙄 what I would give to have at least 30 mins with no tingling.
Hi I’m sorry to hear your having a rough ride at the moment but you’ve come to right place for help and advice. Slowdragon said levo isn’t interchangeable so I don’t think you should be taking 2 different brands, I have just changed to mercury and find it suited me better. Wishing you a speedy recovery sending you a warm hugs x
Hi, yep that's what I was worried about but unfortunately it's all the hospital had when they discharged me. Prev years when I was on block & replace I was good on the Accord brand, not happy about the split brands but I have 23 tablets left then hopefully it will all be 1 x 125 tablet 🤞 x
It is true that changing makes is unsatisfactory but I have been taking two different makes for many years.
It is not wrong if it works for the individual.
(Mind, I won't take Teva levothyroxine.)
As Accord do not make a 25 microgram tablet, there are three choices. Take a 25 microgram tablet of another make. Split 50 microgram Accord tablets. Alternate day dosing 100/150.
I consider 100/150 too big a difference to be acceptable to me. (Others might find it OK.)
And I have always taken my levothyroxine at bed-time.
Hi Lora, thank youI haven't /didn't get a chance to ask the surgeon anything before I was discharged, it was more a case of I was in a private ward & they needed the bed after my drains were removed so I was good to go 😞
I am making a note of all the advice on here so will ask, I am so used to being on just carbimazole steadily for the past few yrs I'm at a loss with all the ts3 / ts4 these days & I know it's all about to change again xx
At the back of the thyroid there are (usually) four glands called the parathyroid glands which control the body's levels of calcium and phosphate. Surgeons removing the thyroid should do their best to save as many of the parathyroid glands as they can, but sometimes they can get removed accidentally, or damaged, or they can stop working temporarily or permanently after they have been shocked by thyroid removal or thyroid surgery.
Over the first few weeks of your recovery your surviving parathyroid glands might start working again if they are healthy enough. If this happens then your calcium levels may recover.
What I'm really trying to say is that you shouldn't assume you need a calcium supplement for ever. In fact, taking more calcium than you need could end up with excess calcium lining your arteries, which is not desirable.
Obviously if your parathyroid glands don't recover then you will need to take calcium supplements permanently. And you should never stop taking calcium unless you are sure your parathyroid glands can control your levels.
For optimal health you need optimal levels of Vitamin D3, and many people with thyroid disease or missing thyroids need to take vitamin D3 permanently. Once you've got your level to optimal you then need to find your maintenance dose to take permanently.
Note that Vitamin D3 raises absorption of calcium from the diet. For that calcium to go into your bones and teeth you will need good levels of magnesium and vitamin K2. Magnesium can be tested but the test is a poor one and the results can be very misleading. If your kidneys are healthy they will excrete excess magnesium in urine.
It does seem like they still haven't got the grip on graves that they should have.I thought long and hard about whether to have my thyroid removed or just carry on as was, once I finally got the vitamin d3 supplement into me the brain fog & extreme tiredness/disconnection was hardly an issue. The swinging factor for me was never having graves affecting my eyes ever again & obviously was told once my levels are sorted, 1 blood test a year & the same dosage of levo for life, nieve? I'm beginning to think so 😞
I'm optomistic it must have been the right decision however after having the night I've just had with coughing to the point of being sick & again no sleep I'm questioning my decision.
Needed calcium as soon as I arose this morn so swopping out my levo to night time from now on, Paracetamols, ibuprofen & throat lozenges on my shopping list today (if I can make it outdoors without passing out) 🤒
Hi. I’m sorry to hear you are having a rough ride. Recovering from surgery is tough on any day let alone thyroid surgery that affects all the systems in your body. I have Graves. Only just diagnosed. Ask all the questions here and write everything down for your next appt with the surgeon/endo. I have done the writing down of questions a lot and taken a pen and put answers besides the questions. That way you can go back and look at the answers. Take a person with you to the appts too. I always found I missed bits but my chaperone picked up bits. I wish you nothing but the best. Kindest regards always NIKEGIRL
Don’t regret your decision. It sounds like you have had an awful time with Graves leading you to this point and you had run out of all other options. It will take time to recover from your operation and it is only 5 days ago.
For many people without a thyroid, thyroxine does return their lives back to normal so hang in there it will get better.
If you find things are not as good as you have hoped for after your Endo has settled on the best dose of thyroxine for you, and this will take a few months, then this forum has a lot of information about getting private blood tests to see if you may need to add T3. I had RAI to remove my thyroid and needed to do this.
Do not concern yourself with this now as you have a good chance that you will return to good health with thyroxine only and you can forget the horrible times with Graves.
Hi there, sorry to hear that you had to remove your thyroid. I don’t have one and would suggest to ask your doctor to switch to tirosint—new generation hormone replacement which is better absorbed and more pure version. I would start with 125 and see how you feel. If you don’t feel well don’t wait 6-8 weeks for test as doctors recommend but check it right away as that could be sign that you are not getting enough/more. I know everyone says that it takes 4 weeks for full absorption but in my case that was absolutely not true—my results changed within days, as body absorbs hormone on daily basis. Good luck!
I’m in uk and my Dr said no way she would prescribe it for me I said what if you write me a private prescription? I’m willing to pay I told her, but she said she would get struck off if she did that. I did research on buying it and was shocked at the price. Just popped in to let others know encase they don’t know how expensive it is.
I am sorry to hear that. I always felt that British system is very good but given my personal experience and what I hear in this forum I am very disappointed that is not the case. Tirosint is Swiss product and is newer generation so you would think that advanced country as England would have new medicine available at acceptable cost. In USA like everything else, Tirosint is extremely expensive but with insurance is somehow bearable. But in Greece on the other hand I paid for one box less than 8 euros, with no insurance.
I too have Graves but was given RAI thyroid ablation back in 2005.
It's early days for you, and I think you need to take time just to recovery from the surgery.
I was fine on Levothyroxine, any brand, for around 8 years and then things went pear shaped for me and I purchased Elaine Moore's first book - Graves Disease - A Practical Guide - thinking maybe that has come back again - and read that it never went away, and started my learning curve on Graves Disease and living without a fully functioning working thyroid.
Elaine Moore has Graves Disease and went through RAI thyroid ablation around 20 years ago and finding no help with her continued symptoms started researching this poorly understood and badly treated auto immune disease. There are now several published books, and a world renowned website dedicated to all Graves sufferers and there is an open forum much like this amazing platform, where you can ask questions of the community, and of Elaine herself.
Optimal vitamins and minerals are essential in your recovery, and slowly you will start to feel more like you and considering all you have been through - please cut yourself some slack.
I know - not something that comes easy to Graves sufferers, but you need to regroup and repair from the inside out, and this is a slow old business. and no thyroid hormone replacement works well if you do not maintain optimal levels of ferritin, folate, B12 and vitamin D and by optimal I do not mean being in the range " somewhere " but being high enough in the range to support T4 conversion into T3.
Some people get on well with T4 only, some people at some point in time simply stop converting the T4 - Levothyroxine - into T3 and some people simply can't tolerate T4 and are eventually prescribed T3 - Liothyronine.
The body runs on T3 with the average person using about 50 T3 daily just to function.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 - with T3 being about 4 times more powerful than T4 and a bit like being your " pilot light " as it kick starts your metabolism, your inner central heating system, and your well being.
It will be in your best interests to keep full sets of thyroid blood test and ensure that you are being dosed and monitored on your T3 and T4 levels and not your TSH which seems to be the general rule in primary care.
I now manage lingering Graves, thyroid eye disease ( caused by the RAI ) and hypothyroidism. After over 2 years of hospital appointments and no resolve I was refused a trial of T3 in early 2018. I am self medicating and buying my own thyroid hormone replacement and currently take Natural Desiccated Thyroid which is pigs thyroid dried and ground down into tablets referred to as grains, and much improved. NDT contains all the same known hormones as in a human gland and contains a measured dose of both T3 and T4.
You might like to start reading up on hypothyroidism and I found Barry Durrant- Peatfield's book - Your Thyroid and How To Keep It Healthy very useful - a doctor by profession who has hypothyroidism, and he writes in an easy to understand, insightful and sometimes amusing manner and I used this book to understand hypothyroid and all that that can throw at someone.
We may not now have our thyroids and the book title sound confusing but we do need to know what the thyroid does so we can try and compensate accordingly.
I believe his book is available through Thyroid uk - the charity who support this amazing forum where you will also read up on everything you may need to know in the future.
NDT was used in the UK successfully or over 100 years to treat the symptoms of hypothyroidism prior to the launch of Levothyroxine by Big Pharma in around the second half of the last century along with the blood tests, guidelines and ranges that we seemed constrained by in 2020.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New to T3 after total thyroidectomy over two years ago due to Cancer 
Total thyroidectomy struggle
Total thyroidectomy but feeling no better :(
New to this ,i got a sub total thyroidectomy 16 yrs ago,i am a 44 yr old male
