Am now three weeks past total thyroidectomy and removal of numerous lymph glands. First week on levothyroxine I felt great. The last week I have been sleeping around sixteen hours a day. I could sleep right now! Due to see my surgeon next week for first check up since operation. What should I ask? I've seen comments here about getting printouts of results and asking about TSH level, calcium,vit D, folate etcetcetcetc. What are THS, T4, T3 etc????
Noone in the NHS has ever mentioned any of this to me. After the operation I was basically told 'here are tablets, you will need to take them every day for the rest of your life'. And then I was turfed out.
I did ask about something last time I was there and got a surprised look as if they hadn't expected a patient to scour the internet to go find all the things they didn't tell me!😀
Please help me, you lovely people!
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HelenaJ
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I'm sorry that they haven't explained everything to you. There's a lot to know and really medics know little about what helps us to feel well.
I'm sure someone will correct me if I try and explain about TSH. Its the way your body measures how much thyroid hormone you have or need. If it is higher then your body is calling for more hormone. If it is lower then you may need less. Thats probably an over simplificaton but I hope you get the jist.
The NHS has a tendency to only look at TSH and believe it is the ultimate measure of how much thyroid hormone you need. This is often not the case and can cause issues with patients needing more hormone yet their TSH is not reflecting that.
FT4 & FT3 are two different types of thyroid hormones.
T4 is basically what Levothyroxine is. Its a storge hormone and takes around 2 weeks to begin working fully.
Your body converts the T4 into T3 the active form of thyroid hormone. Not everyone's body is efficient or capable of converting T4 to T3. About 15-20% of hypo people struggle with this conversion, and can need to add T3 to their Levo(T4). It will become apparent once you get close to your optimal replacement dose of Levo if this is necessary. Note, the NHS can be ignorant about this and insist that everyone is just fine on Levo alone.
The NHS often only tests TSH, sometimes they test FT4 and only rarely if ever do they test FT3. This forces us hypo people to have to buy private blood tests if we are struggling with remaining issues on Levo alone to find out if we have conversion issues of T4 to T3.
Are you able to get the NHS app (only available in England)? Thats really helpful for seeing blood results.
Have you had your vitamin levels tested yet - ferritin, folate, B12 & D3?
Doctors have a habit of over simplifying thyroid treatment and not understanding of what it takes for us to feel well. Keep coming back here and posting your results, get vitamin levels run, take the supplements required to get levels to OPTIMAL and you will do well.
Currently it sounds like you're under replaced.
How much Levo have they started you on and how much do you weigh in kilos approximately?
You may even be on a little too much at that dose.
1.6 x 90 = 144 estimated final dose of Levo, very much a guide.
You need to be on a constant dose for 6-8 weeks before blood tests will show accurate levels so perhaps stick this out and review once you have your first bloods run.
Accord (also boxed as Almus via Boots) only make 100mcg and 50mcg
Wockhardt only make 25mcg
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolsm.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calitonin+ a measure of T3 at around 10 mcg + a measure of T4 at around 100mcg .
T4 is a pro-hormone and needs to be converted in your body into T3 which is the active hormone that runs your body - and said to be around 4 times more powerful than T4.
T4 - Levothyroxine is the first line treatment prescribed by the NHS and works very well for around 80% of all those taking it :
In order for T4 to work well you do need to take the medication of an empty stomach and wait around an hour before eating or drinking anything.
The thyroid hormones are absorbed, ingested and converted into T3 in the gut - so we need good gut health and no thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Once on any form of thyroid hormone replacement one should be dosed and monitored on our Free T3 and Free T4 readings and we generally feel best when our T4 is in the top quadrant of its range with our T3 tracking slightly behind at around 60-70% through it's range.
Some people can get by on T4 only medication - Levothyroxine :
Some find that at some point in time the T4 seems to not work as well as it once did - and that by adding in a little T3 - probably at a similar level to that their thyroid once supported them with, they are able to restore hormonal thyroid balance and feel better.
Others can't tolerate T4 at all and need to take T3 only - Liothyronine.
Whilst others find their health restored taking Natural Dessicated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids, dried and ground down into tablets, referred to as grains.
At around the turn of the century all these treatment options were freely available at your primary care surgery if T4 - the cheapest option, did not restore your health and well being.
Currently from your doctor there is only one thyroid hormone treatment option -T4 - Levothyroxine with the second line treatment option being anti depressants - which are auseless if not your medical need.
If T4 does not work well for you the next step will be a referral back to NHS endocrinology to be assessed for any other thyroid hormone replacement treatment option and depending where you live, it does appear to have become, a postcode lottery, where CCG/ICB financial constraints rather than medical need, seem to be followed.
It is very early days for you, please rest up and just go one step at a time -
Can I please ask the reason for your thyroidectomy - and guessing your TSH needs to be kept low suppressed ?
Do you happen to have any TSH, T3 and T4 readings and ranges, prior to surgery. so to have an idea where within the T3 and T4 ranges your thyroid hormones were, when well-
as that's what the next stage in your recovery will be -
as somewhere within the T3 and T4 ranges is where your thyroid hormones need to sit -
in balance -
and it's that unique set point that gives you back your wellness, both mentally and physically and with your body metabolising, processing and extracting nutrients from food, and maintaining body homeostatsis.
Many people find different brands are not interchangeable
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
What was reason for your thyroidectomy
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)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
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)
I went in to see about a lump behind my ear which turned out to be parotid cancer. During scans they found shadows on lymph glands and 2 tumours on the thyroid. I had no thyroid issues at all beforehand. Everything was removed over 3 operations, the last one was the total thyroidectomy and neck bisection, to remove more lymph glands. At the moment I wake up ( courtesy of the cat wanting breakfast! ) at 8 am, take tablets with water, go back to sleep until 3 or 4 pm then up until 11pm then back to bed. Not really a problem as I live alone and am retired.
And thank you so much for your very comprehensive replies. I kind of knew all that but not firing on all cylinders just now, sorry.
I didn’t get any thyroxine after thyroid removal due RAI but when I did it took 2-3 years to really feel back to old self. You’ve had a really rough time so I’m afraid you have to be patient, be good to yourself but do let your doctor know how much you’re sleeping. Unfortunately extreme tiredness can go with over or under activity and hopefully you’ll get blood results soon. I’ve found jigsaws are a great distraction for passing time. Hope you find a distraction between sleeps.. Take care and good luck..
Sounds like you've had a lot of surgery which will take you time to get over. Resting and sleep is a good thing in that respect. Don't push yourself to be firing on all cylinders for a while. I "only" had a hemithyroidectomy in December and needed to really take it easy until January. You have had a lot more than that.
It can be a bit of a journey. It sounds as if there is lots of advice here already. This link (apologies if it is repeated) gives a basic overview of what you need to know
It has links in it to other areas like best time to take medication etc
I had a partial thyroidectomy in 1994 and a total thyroidectomy in 2008 I was put on a starting dose of thyroxine and similar to you given no information. I felt rubbish all summer (my operation was in the June), and when they eventually did the blood test my TSH was over 32 (it shouldn’t go above 4/5 depending on who you believe). Any change in dose has to normally be small and held for around 6 weeks when they will usually retest blood and adjust again if needed. As you can imagine it took a while and I ended up on double my starting dose.
The key (which I think most on this forum would agree) is not being afraid to advocate for yourself . Doctors can at times try and fob you off with ‘this is normal results’ spin when bloods are only just in range and you might still not feel well. Learn to listen to your body and (unfortunately) you will likely do a crash course and become very familiar with what is normal for thyroid blood test results so you can argue your case if and when needed (doctors like numbers….)
Do also ask questions as you have done on this forum and have a look through previous questions (quite often others may have also been scratching their heads with similar questions or ones that might not yet have occurred if you are early in your journey) - everyone on here is always really supportive and there is lots of information and experience people are happy to share.
Good luck and remember you aren’t alone with this!
Hi welcome to the site. I was in the same position as yourself back in 2015. I knew nothing at all about the thyroid then I joined this site and started asking questions and learning for myself.
It does take a good few weeks to start feeling better but you will be OK with the help from the good people on here.
I was left on a dose of 100 levo for around 6 months which was too low for me. At the time I weighed about 62 kg.
I am late coming to this conversation which is good because I have more information and others have explained in some detail already.
You have been through a tough time with operations and it will take you some time to recover fully. I found the recovery is slower, the more operations you have.
They have put you on a basic dose and will test at your next appointment. (likely to be reduced) Ususally with a Thyroidectomy they test the full range, especially at first to ensure you are converting. Because of your cancer you will be put on a higher dose of Levothyroxine, called suppression, which makes sure that your body has plenty and doesn't want to try to grow a new Thyroid gland that might be cancerous.
Are you being oferred radium treatment? Come back if that applies and we can explain that.
You may like to look at a specialist Thyroid cancer site like Butterfly Thyroid Cancer Trust for further information and support with the cancer diagnosis. It also explains the different types of cancer.
At the very least you should have been given a leaflet and someone to call with a cancer diagnosis. I do hope you feel better soon. Do you have a partner or freind to care for you?
Have you had your calcium levels checked? One of my first signs of low calcium is overwhelming fatigue. I had a TT in 2011 & my parathyroids never fully recovered.
I had a hemithyroidectomy a year ago and since then I have had borderline low calcium levels at each and every blood test, even though I’m eating lots of dairy and taking supplements to the total value of 1500mg daily. Therefore my level’s should not be on the low side. I am not receiving any treatment from gp for this as my levels are “borderline low”. If you have a few minutes to reply, I wondered if you could tell me me how you are managing your low calcium levels and share any other information you have about this with me please? Do your blood calcium levels return to normal when you take calcium supplements? Thankyou so much in anticipation.
Hi, I have not had any blood tests yet. The operation was only 3 weeks ago and I don't see my consultant until the end of the week. I have no idea what my calcium levels are at the moment.Given all the fantastic information from this group I will be making sure that I get info on all my levels and take it from there. I hope there are others on this site that may be able to help you.
Any day now will be able to post my gold thyroid test results from blue medical which will include vitamin d, but I am taking daily supplements of this together with vitamin k2, and my levels have been good previously, so it’s a bit of a mystery.
I managed my calcium with 2 Addcal daily for 10 years but had a bad reaction to the covid jab which sent my calcium levels very low & I was in & out of hospital for 2 years with seizures, tetany & stridor. I am now taking 4 Addcal daily & some Alfacalcidol as well as vitamin D. I have learned that people who have had a thyroidectomy often need slightly higher calcium levels & I would be in hospital with borderline levels. Mine need to be around 2.36. Lots of information on parathyroiduk website & they have a Facebook group. If your levels are borderline & you are taking some calcium perhaps it is not quite enough if you are symptomatic. You should be managed by an endocrinologist with calcium management experience as not all have this.
Thankyou for your reply debjs. I do take vitamin D daily, and magnesium away from the calcium supplement. I will definitely have a look at the parathyroid uk website and will start researching which endocrinologists in my area have relevant calcium expertise, you have spurred me into action! I’m sorry to hear how badly you have suffered with this after having the covid vaccine! All the very best to you.
I, like you, felt wonderful at first after the total thyroidectomy (actually for me euphoric with the replacement hormones) & then had a sudden drop as well. The need for sleep was narcolepsy-like most days. It was like someone snapped their fingers in front of me and out. I can only add that additives can also wreak havoc in these areas as Slow Dragon explained, so do not underestimate that as well. Nor let any doctor or pharmacist tell you that that is impossible.
The best piece of advice is to not change your dose in either direction more than 25 mcg at a time, do not let that happen if your doctor is not clearly aware. I got put from 112 to 200 early on in one go, and it took ages to settle after that. My TSH had gone in the 30s (range stopped at 4)
Push yourself through horrendous side effects to wait out each level for - at the very least - six to eight weeks. That gives you clarity as often things can change when you least expect it & if not you will at least be less likely to miss your sweet spot going forward.
After you have given levothyroxine a full go (good sign you felt wonderful at first) there are other options, if need be.
All the best to you. It took me a long time but I am in a pretty decent place with thyroid hormones. It does happen.
It sounds like you had “extra-thyroidal spread” which can place you in a higher risk category, meaning more emphasis on keeping TSH low (suppression) and, likely, RAI (radioactive iodine treatment) to eliminate any possibly remaining thyroid cells. Doctors will usually only use levothyroxine to suppress TSH and not bother testing Free T3 so it’s important to insist on Free T4 and T3 testing. High T4 and low T3 often results in being “wired and tired”.
The dictionary here thyroidcanceradvocates.net/... may help you get a better understanding of all the new strange terms. It’s important you learn all you can so you are able to advocate for yourself - it can all seem overwhelming at first.
Some important things up front: obtain printed copies of all imaging (scan) results, surgical reports and pathology reports. You should know what kind of thyroid cancer you have; treatment can be different for different types. If you do need RAI there are different options (stopping meds or receiving Thyrogen injections) — either one will mess up your thyroid lab levels for a couple of months.
It can take six months or more for everything to settle down and it may be harder when you have to deal with NHS but with the right support you can have an OK “new normal”.
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