Can I ask: I had total TT in May this year diagnosed with graves/ toxic thiyroid put on levo dose steadily decrease by surgeon due to hyper symptoms then reduced further by gp due to low /suppressed TSH.. I'm now on 50gm of levo.. But sure my gp put me down to 25mg then said he would take me off the levo for six weeks to see how I go.. I saw another gp who put me up to 50gm(my TSH is 3.53....my T3 is 2.9...T4 is 10.9)..thing is I'm having hypo symptoms mainly being very fatiqued but I'm also having hyper symptoms running to the loo hot sweating again slight tremmor very weak and a thumping headache ..i am not getting on well with the levo as you can see in previous posts. I don't know if these symptoms are due to the levo or my results I'm lost and fed up I feel as ill as I did when I had my thiyroid 😢😢😢😢
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birkie
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After a TT you MUST take some thyroid medication or you will develop myxedema and probably die. Having RAI treatment may, perhaps, influence things for better or for worse, impossible for me to say.
A dose of 50 of levo is most unlikely to be sufficient for you and you would more than likely feel great improvement by taking NDT, rather than levo. Blood tests for athyreosis (no thyroid gland) are not the same as for those who have some form of working thyroid gland.
I would suggest you get a different endocrinologist and GP, ones that actually understand what they're doing.
If you mention NDT to either, you need to be fully aware that every UK doctor registered with the GMC is instructed to tell their patients about any medications they are aware of that may improve the health of their patients.
Only prob taking higher dose is it flares up my colitis I get inflammation in my bowel and stomach bad headache and bad muscle pain this has persisted through out taking the levo only got some mild relief when I was on the 25gm dose.. Now gone back up to 50gm and its gotten worse.. Gp has not offered me anything other than levo he said it can take years to get the right level of levo... Well I've been ill for 3 years due to him not diagnosing me with hyperthyroidism in the first place I showed every symptom but he just went off blood work being normal until I was diagnosed by another gp 3 weeks after seeing him.. Eventually went in to thiyroid storm think he would know better by now.. But no still keeping me ill... 😢😢😢😢
If 100mcg Levo bothers you try splitting your pill and take it twice a day 50mcg in the morning and 50mcg in the afternoon (away from food and meds) I do this it has helped me a lot and for migraines once I started magnesium those seemed to have stopped (not sure if the mag helped or hormones settled down). Magnesium will help a bit with pain too.
Your care has been quite dreadful. I'd be tempted to make a formal complaint depending on your options of getting another doctor.
Some considerations regarding Graves' and hyperthyroidism.
1. A total thyrodectomy is not always total. The thyroid is very close to blood vessels and nerves near the larynx. Also each person's anatomy is different. A surgeon can't be too adventurous in removing every trace of thyroid tissue. It sometimes grows back.
2. The TSH can take many months to recover after it has been supressed for many months. Sometimes it does not recover.
3. Graves' antibodies can suppress the TSH, the antibodies hang around for about a year after a TT. For these two reasons TSH is not always a useful marker of thyroid status in hyperthyroid patients.
Your fT3 and fT4 are too low, you are hypothyroid. Do you still have parathyroid problems? This could be confusing the situation.
Has an endocrinologist diagnosed your colitis? If so what form? A doctor can prescribe a locally acting corticosteroid 'budesonide capsules' (I found 'Budenofalk' good) to control colitis. It's expensive but don't tell the doctor!
You might be able to manage the levo by taking a large dose every two or three days.
Don't let the doctors continue to mess you around, maybe take someone with you to your appointment and politely make it clear your care has been unsatisfactory.
My colitis was diagnosed after ten days in hospital consultant said I have reactive colitis had all the tests scans/cameras ect... I found the symptoms of hyperthyroidism /graves were still their after my TT.. Surgeon noted this and decreased my levo steady from 125gm to 75mg when he then handed me over to my gp who has decrease even further to 50gm then 25mg due to my TSH being to low but he denied saying he drop to 25mg I'm now on 50gm but having same stomach /bowle prob gp put me on buscopan for colitis 🙄
Buscopan is for IBS, better drugs are available for colitis. I'd ask for another referral to a gastroenterologist or directly contact the one who looked after you before. The actions of the surgeon were reasonable, start you on the standard treatment after TT and then refer you to an endocrinologist if there are problems. The endo needs to sort out your problems with levothyroxine and check your parathyroid function. I believe there are links between parthyroid and colitis so the two specialists need to work together. It's difficult but I'd push for both referrals on the basis you want it sorted once and for all.
I actually had hyperparathiyroidism in 2004 but was in a different surgery I mentioned this to both gp and surgeon my gp said he couldn't find any record of it in my records!! I told him I was under a endo told him the endos name.... The endo waited six weeks took blood then said my levels were normal I was just left wish I'd researched hyperparathiyroidism but I became very ill was eventually diagnosed with ME/fibro.. GP still can't find any record.. I'm now taking this in to my own hands as I don't trust doctors.. I was rushed in to hospital about 5 months after my TT with what the A&E doc said was me passing a kidney stone. Their was blood in my urine and my calcium was off I was told to contact my surgeon to inform him.. I did this but he said I'm not concerned with your calcium its fine.. This is such a struggle trying to fight doctors ect especially when you don't feel very well.. 😢😢😢
I'd contact each specialist and ask for a full copy of your medical notes. Treat yourself to a cheap Christmas present (a folder to put the notes in!). You can then collate all the information as and when you are able to, perhaps ask someone to help. You will need to be calm, friendly and assertive, not easy when hypo.
Please change your doctor otherwise you may become very unwell. You state-
"But sure my gp put me down to 25mg then said he would take me off the levo for six weeks to see how I go.."
You cannot possibly not take thyroid hormone replacements due to you having NO thyroid gland at all. What is your doctor talking about.
The fact that your thyroid gland has been removed altogether, you must be given steady doses of thyroid hormone replacements (usually levo) which should be increased every six weeks until you feel well and symptoms relieved.
I have no clue how these medical professionals pass their exams - because it is clear that yours has absolutely no clue.
As your thyroid gland was removed altogether, you must have a decent replacement dose, gradually increased by 25mcg every six weeks until your TSH is 1 or lower and Free T4 and Free T3 in the upper part of the ranges. The fact that they rarely test the Frees, means the patient may feel very unwell indeed.
If your dose is too low, unpleasant symptoms can appear similar to being on too high a dose.
I am not medically qualified but you must have a dose (gradually increased) until you're symptom-free. Our body cannot function if both FT4 and FT3 are in the upper part of the ranges and a TSH of 1 or lower.
GP should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.
Do you follow this procedure?
Get the earliest possible appointments, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. Hormones should be taken on an empty stomach with one full glass of water and wait an hour before eating.
The aim is a TSH of 1 or lower with a Free T4 and Free T3 towards the upper part of the ranges.
Too low a dose is similar to too high a dose as we will feel awful.
I do all the necessary things before my blood draw.. But my medical team(surgeon did my levo the other way he started me on 125gm then decrease to 100mg due to hyper symptoms then reduced to 75mg still had hyper symptoms he then said I can't do anything more for you I will get you an app with an endo.. He then put me back to my gp.. Who dropped me to 50gm because my TSH was to low.. Then to 25mg which he denies 😠 I'm now back on 50gm but having bowel and stomach problems with the levo I have since being on it.. But it becomes worse the more levo I take gp knows this but is still fiddling with levo in pill form I've a lot of questions I want answered when I get my next app.. 😠😠
I’m sure this bit is a typo “Our body cannot function if both FT4 and FT3 are in the upper part of the ranges and a TSH of 1 or lower.”, the rest of the text is clear.
I disagree with fT3 and fT4 being in the upper part of their reference intervals, most patients do fine with fT3 being around mid-interval although some need higher levels.
Although some patients still have residual tissue after a TT which can secrete substantial amounts of hormone this is most unlikely in your case as your hormone levels are low. Another blood test measuring TSH, fT3, fT4 and Graves’ antibodies would be really useful.
Thanks for the reply I asked about antibody test his answer was we don't need to do that as you don't have a thiyroid 🙄I have ostio/rhumertoid arthritis and colitis ME/fibro.. I'm currently waiting on vit D said he will request this at my next bloods on 14th Jan... If I get nowhere with him Im seriously thinking of moving surgerys 👍
It sounds like you have not received good advice to manage your colitis. Has your GP ruled out gluten sensitivities and other food reactions? Has your vitamin D level been tested? Has your GP checked for autoimmune reactions with anti nuclear antibodies tests and ANCA antibodies?
Autoimmune conditions can coexist and you may need to address several coexisting conditions to regain your health. It sounds like it's not going to he a simple fix. In the meantime you do need to take sufficient levothyroxine to at least keep all your thyroid levels within the lab range or you will become ill from hypothyroidism.
I asked about antibody test he said because I don't have a thiyroid I don't need that test.. My colitis was diagnosed in 2016 when I had several attacks in my stomach and bowels was bleeding from them and vomited blood it took at least to trips to A&E before being admitted for ten days I had scans cameras upshot was I have reactive colitis the anti thiyroid meds made me worse and I couldn't take them I can't take aspirin any anti imflamatory meds ect they flare the condition up. Currently waiting on bloods including a vitD and cholesterol which I had to ask for the vit D as he has not done one since my op.. Can say he was not pleased with me asking for test to be done😢
The antibodies tests I mentioned are not thyroid antibodies. They indicate other possible autoimmune conditions. I don't know which antibodies test you requested but if you had Graves disease you will still have thyroid antibodies as TT does not eradicate antibodies. It would be good to know if you have TSI or TRAB as they can provoke thyroid eye disease. The other antibodies I suggested can be linked to various kinds of inflammatory bowel disease or other autoimmune conditions.
You can't really make good decisions until you have the full picture. It may be a nuisance to your consultant as they would rather fire fight than investigate underlying causes as it takes time. But you need the information to enable you to manage your condition.
I have rhumertoid arthritis and ostio.. Colitis,, I believe rhumertoid is an auto immune condition also colitis I knew I was attacking my thiyroid by my symptoms they became worse as the years went on until it was to late to save, it had gone toxic I had thyroid storm and it needed removed.. My gp is not interested in anti bodies of any kind I have bad flare ups and are constantly in pain muscle/bone and bowel/stomach.. Because I was diagnosed with fibro he puts my pain down to that eventho I've been diagnosed with rhumertoid arthritis to.. I was put on a course of steroids after being in hospital for ten days with a bad colitis attack I was on them for 3 months and felt better but couldn't stay on them.. But no other medication was prescribed other than buscopan.. 😢 I've had all the tests camera's ect and it's reactive colitis and gp and endo know this 😠
It sounds complicated so you'll have to work with your consultant to find better solutions and if you can't then ask for a referral to a different consultant or a second opinion.
If you have no thyroid you can not go without medication and everything you just described is exactly what I had gone through after my thyroidectomy.....I felt like I was on a roller coaster that just wouldn't stop .....currently I feel decent although not perfect I'm on 100mcg synthyroid and 10mcg cytomel.
Your TSH level is too high even though it's probably in the range .
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