Just received this from my endo who doesn't want to see me... He says my TSH as normalised my TSH is 3.53 mU/Lthe ranges are 0.30-4.50 mU/L.. My T4 is 10.9 pmol/L ranges 11.00-22.00 pmol/L my T3 is 2.3 pmol/L ranges 3.10-6.80 pmol/L.. This endo knows I'm not good on synthetic meds but is pushing for me to go up from 50gm to 75mg without seeing me.. All my bowle scans showed inflammation due to medication affecting my colitis at the moment I look pregnant my bowles are swollen and tender and I know it's due to the levoroxine I don't need another camera up the bowle I had the last one in Jan 2019 and got the all clear on the inflamation I had stopped the anti thiyroid meds so the inflamation had gone down he also my gp said I'm not hypo... 😠
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birkie
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That is a really low dose as I said before my Dad is on 100mcg and is classed as elderly at 78. I would self treat with NDT because he clearly has no idea how to treat thyroid disease and will keep you ill.
I'm really frightened to go up as my colitis reacts to the levo I was on 125gm to start with and was awful on that the same on 100mg 75mg and now 50gm my bowel is swollen now and I am tender in that area I've also had bad cramping endo knows all this but has not given me a chance to try NDT... As I say I'm not good on synthetic meds.. 😩
Can you afford to buy NDT online? I purchased Thyroid S from Thailand and self medicated about 2 years ago. It was scary but I persisted and got myself up to 1 1/2 grains with help from others who were on NDT.
At the moment I'm having an assessment for universal credit again😩 I've to fill in all the flipping paperwork it's a nightmare I'm on pip to so it would depend how much NDT is but the way I feel I would do anything to feel at least human again.. 😩
Thanks that a good idea I don't know where to get it from or how much it is.. Also my consultant accused me of using sourced medication because my bloods were so bad he said I should never buy medication for the thyroid from abroad.... Well we wouldn't need to if we could get it from the NHS.. 😠😠😠
If you make a request on the forum asking for information of where to source - the post will be closed for responses to be posted but you can receive private messages.
I'm sorry I'm in pain and peed off with my endo and gp just grasping as straws to get any help I do not want to end up in hospital again with bowle stomach problems again😢
The majority on this forum have been let down by the professionals. Those professionals who did treat us and took more notice of clinical symptoms lost their livelihoods and/or therefore forced to ignore what they were trained to do as students..
I wonder how they I mean gps/endows would be treated if they were diagnosed with a thyroid disease if they didn't get along with levo would they source their own or get it privately or get it on the NHS... Bet they couldn't afford to screw about with different levo meds for a wait and see approach wages could be lost doing that... God forbid!!! 🙄🙄🙄
I think they will be seeing a private consultant who will prescribe what they need, although the BTA have withdrawn NDT through false statements, T3 was also withdrawn and the perfect excuse was 'too expenseive'.. We used to be able to get NDT, or T3 or T4/T3 but now restricted to levo only.
Re NDT, considering it actually saved lives since 1892 how could they make False Statements???? Neither were any blood tests around in 1892, only symptoms, symptoms, symptoms.
Your T3 and T4 are both under-range, so you are under-medicated. Is it worth changing to a different brand of levo (as well as a higher dose) and seeing if that suits better? He's increasing you nice and slowly, but you really need T3 and T4 to be in the top half of range, rather than underneath the bottom.
Been on 5 different ones I'm now on Eltroxin gp said it would help with the bowle stomach problems but it hasn't. I'm not good with synthetic meds and gp / endo know this I feel like I'm pregnant my stomach is distended swollen and tender.. But their both pushing to put me up to 75mg levoroxine without finding out if I can try a natural thyroid med.. To be honest I really don't feel any better taking the levo I'm still sweating, have tremors. I'm exhausted can't sleep. My heart beats fast I feel dizzy and feel like fainting.. I'm wondering if I'm converting the T4 into T3... 🤔
The fact is that it is we, the patient, who are surprised that it seems to take forever to be diagnosed. Before blood tests were introduced as being perfect for diagnosing in place of clinical symptoms, for thousands of people they remain unwell and not on an optimum dose.
The aim is a TSH of 1 or lower (not somewhere in range as many doctors seem to believe).
Our vitamins/minerals have to be at optimum and B12 and Vit D in particular are pro-hormones.
You will not be offered 'natural' hormones as the BTA have made False Statements about this product in order to get it withdrawn from being prescribed. One of TUK's Advisers wrote to them for three years before his accidental death, but they never did have the courtesy to respond to a Researcher/scientist.
My endo said my TSH had normalised at 3.53...I questioned this with my gp stating that it was to high and should be 1 or lower I was told that was not correct and it was in range I then said well if that's the case why do I feel so unwell at that range and why do u think everyone should be well at that range we are all different and have different metabolisms ect why umbrella everyone... I got a rather stricket answer back,, sort of on the lines of you do know what your talking about,, well neither do u gp.. 😠
Normalised to the professionals may mean TSH is 'somewhere' in the range (up to 10), but we, the patients, feel best when TSH is 1 or below. we also need the FT4 and FT3 in the upper part of the ranges but these are rarely tested.
They talk in a language that we, the patients don't understand because it is us - the patients - who are well aware if have improved or not improving at all - which seems to be the majority. on this forum.
The last GP I had to explain what I was taking & why agreed I know more than he does, but he still called NDT snake oil. I think his ears were bleeding as I left. 😁
"He says my TSH as normalised my TSH is 3.53 mU/Lthe ranges are 0.30-4.50 mU/L.. My T4 is 10.9 pmol/L ranges 11.00-22.00 pmol/L my T3 is 2.3 pmol/L ranges 3.10-6.80 pmol/L.. This endo knows I'm not good on synthetic meds but is pushing for me to go up from 50gm to 75mg without seeing me.. All my bowle scans showed inflammation due to medication affecting my colitis..."
He clearly doesn't understand the numbers he is working with!
The scans may show inflammation ...but how have they decided the inflammation is caused by the levo?
You are under medicated...you are hypo!
TSH should be close to 1.. Medics wrongly diagnose by TSH
I have reactive colitis I couldn't stomach the anti thiyroid meds or aspirin or ibuprofen or HRT or the pill or antibiotics I throw up on all of them my intestinal tract gets badly inflamed I had 2 bowel scans and 2 camera tests one scan when the meds were in flaming the bowel and stomach then I came off the meds had another scan in 4 weeks without the meds and my bowel was clear no inflammation the gastro consultant diagnosed inflammation due to meds inability to keep them in the body bad reaction... And I'm the same on levo been on 5 now all affect the stomach and bowles... I've never heard my stomach and bowles make so much noise I look like I'm pregnant I'm very tender in the bowles loads of wind and acid backwash.. I came off them for a week and had no prob when eating but when I'm on levo as soon as I eat it comes right threw me with bad pain cramping.. I was on 125gm levo and had bad loose bowles with pain same on 100,75,50...so a increase would not be of any value that's what I'm bothered about..
Thank you for explaining your horrid situation, I didn't mean to make light of anything you said and I apologise if I've been insensitive
The fact remains that your labs indicate hypo...
Have you considered liquid thyroxine?
I've read it's more expensive but more easily processed by the body because...
"most of it is absorbed through the mucus membranes in the mouth and so doesn’t depend much on the gut, so you are more likely get a proper, consistent dose."
It might be worth discussing this option with your GP.
Other members may have experience of liquid thyroxine...a new post asking about this might be an idea.
I have inflammatory bowel disease gastro consultant said I had reactive colitis my bowles seem to react to med the most this was found in 2015 whan I had a bad attack to antibiotics my body just wouldn't take them I was bleeding from my bowles and stomach.. Same with aspirin. I was taken off the pill. I could not take HRT. Or any anti inflammatory drugs its been quite a journey for me realising its the drugs my pain meds for fibro. Ostio and rhumertoid arthritis is a gastro resistant tablet I can take paracetamol and my colitis meds I also take omeprazole which are gastro resistant to.. But I think my problem is that I take the levo with water then wait an hour to let it absorb so its sitting on my empty stomach 😢
I have it under complete control now (wish I could say the same for the Hashi's - but I'm new to that, so still learning).
About 5-6 years ago I realised one day with complete horror that I was on 13 different medications for UC. The vast majority of those medications were to counteract the effects of other medications.
I changed my diet drastically after buying a book called The Specific Carbohydrate Diet. I can highly recommend it... although, like me, you now have thyroid issues that complicate things a bit.
I was treated with steroids and other nasty meds for UC when, I have only recently realised in the last 18 months, I also had IBS very badly. My GPs and Gastros hadn't picked up on this, so I was treated for UC when I had Hashi's. I had so many high-dose steroids I now have osteoporosis - another thing I've started to address with K2 and some calcium (as I don't eat dairy).
Anyway, without going into my life story, I sorted the UC with cannabis oil (the really strong stuff, not CBD oil) in the beginning. Plus optimising my immune system, as I discovered suppressing it (with steroids and azathioprine) made no sense for good health. This means good diet and lots of supplements.
I was a bit confused by some symptoms and eventually found out (by seeing a private specialist in thyroid and adrenal issues, Dr P) that I had low adrenal reserve and was hypothyroid. It took another 18 months and the help of people on here - and doing my own tests (the NHS is rubbish) - to finally find out I had Hashi's.
Last summer, after seeing something on this site, I started a programme of resetting my gut. I bought DVDs and supplements from America and began a 4 month programme, which I completed early December.
What a difference! It sorted my IBS out and I had a brief flare of UC after xmas due to not sleeping, which resolved itself as soon as I got a few day's normal sleep under my belt. I took no meds, it just went. And for the first time in about 20 years it was just bleeding but without diarrhoea. I was amazed - still am.
Turns out I also had parasites and these cause bloating and wind and irritate the gut.
I was able to eat salad again. I couldn't be happier. And I was coping with a reduction in my cannabis oil, as I was trying to find a new supplier.
I am now trying to sort out my Hashi's. I've been doing my own tests - again, NHS is crap - via Medichecks on a Thursday. This allowed me to see I needed some T4 (I take NDTs and have been since the summer last year). I'm monitoring this at the moment.
I also found out I was low in zinc and ferritin - hence my hair was dropping out like I'd had chemo. I'm in the middle of addressing this.
I also monitor my folate, B12 (way too high - I went a bit mad with the supplement when I eat a lot of B12-rich foods anyway), same problem with D3, which I'm also trying to lower, selenium, magnesium, and potassium (potassium is important with UC).
I make sure I eat anti-inflammatory foods like organic virgin olive oil, flax, l-glutamine, fish oil, coconut oil, turmeric, ginger, live coconut yogurt (CoYo is the best for UC), etc. I would also recommend the best probiotics you can afford, and digestive enzymes. And double check every supplement you buy for lactose, gluten, corn derivatives (GMO), magnesium stearate, and other nasties.
I started with soups - smooth ones, as they're easier to digest, and I put my berry smoothie through a sieve to remove the pips. I cooked all veg very well then slowly eased off as my gut improved. I kept fats to a minimum at first, as they take a lot of work to digest.
VERY important is to give up gluten. I can't stress this enough. Plus sugar, which is highly inflammatory, and preferably all dairy except grass fed organic butter. If you can tolerate it with the thyroid you can have some organic hard cheese that is low in lactose, like cheddar or parmesan. NO soft cheeses whatsoever.
Follow this protocol and your UC WILL get better, I guarantee.
Thyroid is a lot more complex, as I've found. You really need all your nutrients to be optimal to deal with this damned disease, and that takes planning. I've spent the last few days literally putting together a planner of what to eat, what to avoid, and when to take my supplement and with what foods or other supplements.
For example, I was trying to get my ferritin levels up and my last test showed them dropping despite eating chicken livers every day. Turns out I went a bit mad with the turmeric (I put loads on my chicken livers that I sauté with veg) and this interfered with the uptake of iron from the chicken livers.
I've also had a crash course in oxalates (the thyroid really doesn't like them), and I eat loads of them in the form of ground almonds that I bake bread and cakes with.
It's a steep learning curve, but you can do it.
I'm happy to send you anything I've discovered that helped my UC. There are more knowledgeable people on thyroid disease, though, on here. I only know what I do about thyroid from coming on here, so you're in good hands - although it's VERY confusing at first. Best to read a few books - and Isabella Wentz is great for thyroid info if you have Hashi's.
Thanks for the info first I don't have a thyroid as it was removed last May so I solely rely on medication for my hormones I've only been given Levo which as I say is not working well for me my colitis was under control long before I was diagnosed with hyperthiyroidism I also have IBS. I don't eat cheese I have chicken ,vegetables only have decaf tea no coffee salads no peppers,no spices,no hot or spicy things,,I'm on omeprazol for my stomach I try to keep to a bland diet,,my colitis had a really bad flare about a year before diagnosis of hyperthiyroidism I can remember just eating my meal to which I eat little and often and running to the loo way more than normal of course my GP just said it was a flare up but in truth it was one of the symptoms of an overactive thyroid.
When I was diagnosed I was put on carbimazole I had a really bad reaction to it hospitalised whilst on it then taken off it put on PTU same had a bad reaction to it all affecting the stomach and bowels had scans and camera which showed server inflamation of the stomach and the lining of the small intestine and large intestine came off them and all went back to normal...now let's skip to after my op for thyroid removal given Levo 125m I still had some symptoms of hyper but was told that would be because it's still in my body and it would be ejected soon,,I was very hyper on 100m 75,50 on 50 Levo now...and my stomach and bowle symptoms remain I came off them for over a week and my stomach and bowle symptoms abated felt OK but of course I had to go back on them and it all started again so sure it's the meds my diet is ok,,unfortunately their are several meds I cannot take due to these problems 😩
Another thing, forget all pain meds except paracetamol. They make you bleed, and codeine will give you constipation and you'll be in agony during a flare. Don't get paracetamol with caffeine in it, either.
You need to get off omeprazole asap - why are you on it. Are you on prednisolone? It will interfere with absorption of nutrients and other meds, and it's a nasty drug.
Rheumatoid arthritis can be sorted through diet - it's just more inflammation, ATEOTD. Again, ditching the gluten, sugar, and dairy and building up your immune system should do it.
I'm afraid I can't ditch my pain meds I have server Fibro as well as ostioathuritis and rhumertoidathrutis I also have chronic fatigue syndrome 😫 Which I hate more than my thyriod illness..before I was diagnosed with hyperthiyroidism in 2018 I had a 6 month bout of hyper parathyroid illness in 2004 which made me really ill as again my GP never caught it said it was a kidney infection all my problems came after this illness I really never recovered and was bedridden for months..went to many consultants eventually saw one at Newcastle who gave me a total medical and diagnosed CFs/ Fibro my ostioathuritis was diagnosed later as was my rhumertoid I also need a new knee cap as mine is wrecked with athuritis 😫😫😫
From all I've read on thyroid disease and symptoms, CF and Fibro are part of it. CF and Fibro aren't diseases in themselves, just symptoms of something else.
All of the illnesses you have are linked to your immune system. Having UC, I've just realised it puts me at risk of other auto-immune diseases, so the Hashi's is linked to the UC and appeared after a prolonged period of severe stress.
Sorry got to say I'm not on codine but I was for about 9 years my gastro consultant took me off them and put me on a gastro resistant pain med called duloxetine I've had no problems with these meds..👍🏻
Ho no I didn't take it the wrong way I always look for advise on here and it's a god send.. 🙏 I'm just so sick of my gp and endo trying to push me in to more pain.. Like they did with the anti thiyroid meds they nearly killed me I went in to thyroid storm because the meds were not working I eventually vomited them bk but was told to keep on taking them that was from Oct till Jan 2018 when I was rushed in to hospital I should have sued both of them for incompetence.. I can't believe their trying the same again.. I'm just waiting on my blood results I had them taken today so be bk hopefully soon.. I've told my gp if their as bad as the last ones he will need to try me on something that doesn't sit on my stomach... I take my levo at 6/ 630 in the morning with plenty of water then have nothing for an hour.. I think that could be the problem it's sitting on the stomach disolving 😩
If you have colitis and similar problems you probably can't absorb your levo correctly, so you'll need a higher dose. You could suggest Tirosint which is liquid levo, but more expensive so GPs don't like prescribing it. You are very undermedicated currently.
I've had my thyriod pannel done just yesterday and recived a e-mail today saying I've to contact my surgery so can guess my results are awful as my last was...I will now be asking if I can try liquid Levo...as I do think I'm not absorbing well my T3 was 2.9. Low...😳
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New endo refuses to oversee my care because I want to continue NDT, he only supports Levo, HELP!
Dr wants to lower meds I dont
Endo results, please help!!
