I'm so glad we have a site like this we can come to to ask our questions thank you 🙏🏻
Firstly I've posted on here a few times since my TT in May this year I've been on Levo since May varying doses it seems that my TSH is still suppressed and my T3 is at the bottom range and my T4 is 20% above range. My GP as suggested I come off Levo for six weeks to see if my TSH rises as he commented I am not good on synthoid meds so maby their not working for you or maby you still have to much hormone in your system and taking Levo is just topping it up..🤔 Weird I thought!! Or your pituitary gland may not be working properly ...not converting) a lot to take in I thought,,,can anyone on here tell me if I will have any side affects of coming off Levo for six weeks? Also I have an app with an ENT surgeon on Nov 4th 2019 as my headaches/ ear pain is worse my right eardrum as sucked in rendering me partially deaf I have server pain in my ears my eyes water all the time and I have a constant runny right nostril like a watery fluid..I feel awfull I'm mostly in bed due to the pain and feeling sick and dizzy,,I'm dreading trying to get to the ENT app as its a taxi ride to the train station then a one and a half journey to the city then a taxi to the hospital then all that again to get back home...I have tried to ask for transport but I'm not eligible 😫 😫
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birkie
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Looking through previous posts can't see most recent blood test results
How much Levothyroxine are you currently taking?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
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, best not mentioned to GP or phlebotomist)
Your FT3 is too low, it needs to be in the upper quarter of the range ,your B12 should be near the top of the range and your ferritin is below the range and as your note says you need to see your GP about it.
My GP is taking futher blood work but all the others that say normal no action required he is not bothered about..he says my T3 is within range as is my T4 only my TSH is suppressed so it should be treated by lowering my Levo dose...scratching my head and totally lost tbh...😡😡😡
Normal, means within range not what is optimal for you.FT3 is right at the bottom not below as Shaws says .However Shaws has given good advice .
I seem to recall that there are one or two on the forum whose TSH has been virtually undetectable for years. The total focus on TSH is routine and routinely wrong.
I am not medically qualified but this is my response.
Serum free T3 level...A Normal..3.1...Pmol/L....3.10-6.80pmol/L yours is below range should be nearer 6.
T3 near bottom of range and this is the Active Thyroid Hormone need in our millions of T3 receptor cells.
Serum free T4
level...A normal..13.3..Pmol/L..11.00-22.00pmol/
Both frees should be towards the upper part of the ranges instead nearer bottom. FT4 too low.
Serum TSH level 0.05...mU/L...0.30-450mU/L...tell Karen to reduce dose to 50gm thyroxin..
doctor will assume due to the very low TSH that you're becoming hyPERthyroid so thus the reduction.
Blood tests have to be at the earliest, fasting (you can drink water and allow a gap of 24 hours between last dose and test and take it afterwards).
B12 is low - GP should ensure you don't have pernicious anaemia before any action to increse level.
Serum ferritin ..A see GP/NP....17ug/L.....23.00-400.00ug/L
well below range. Action needed.
To alert a member put an @ before their 'name' although usually the person will be alerted immediately to your response..
SlowDragon will respond when she's alerted or will answer automatically when she reads your post.
To reduce your dose I think is very wrong considering you have no thyroid gland at all so cannot produce them
As you've no thyroid gland you obviously cannot produce any thyroid hormones you are reliant on synthetic hormones to restore your health.
Many who have had a thyroidectomy find that they improve on NDT (natural thyroid hormones that contain all of the hormones a healthy gland would do. It is from pigs' thyroid glands. NHS used to prescribe but withdrew this as it did T3. Leaving patients no option but to source their own. I am going to add in diogenes who is more qualified than I am.
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
How much Levothyroxine are you currently taking?
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Your ferritin is absolutely terrible, so you need FULL iron panel testing for Anaemia. Likely to need at least iron supplements, but may need iron infusion
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
B12 is far too low so you need testing for Pernicious Anaemia before starting on any B vitamins
Folate needs testing too as this works with B12
No vitamin D test result?
Why did your doctor suggest coming off levo? If you have no thyroid gland, that will leave you without any thyroid hormone at all once the T4 leaves your system.
If you don't do well on levo only, and since you have had a TT you have no endogenous production of T3 unlike a person with a healthy thyroid, it's possible you'd benefit from the addition of T3 to T4 (or switching to NDT but it can be difficult to find doctors prescribing it). If you add T3 to T4, you usually decrease T4 and then add a low dose of T3 (say, 5 or 6.25 mcg daily), then retest in about six weeks and, if needed, add low doses of T3 until you're symptom-free.
Some people do best on T3 only, but I'd say it's too soon to tell if that is true for you.
However, I don't see how going off levo completely could make you feel better. If you are a poor converter, adding T3 to a lower dose of T4 makes more sense.
Plus, as I see it you have two problems: no endogenous production of T3, plus poor T4 to T3 conversion. That could leave you pretty hypo.
This is what I asked my GP if adding T3 would be a better option but got the same robotic reply "we only concentrate on TSH" I'm not good on synthoid meds and my surgeon,GP,and endo are awear of this...it was my main concern when discussing my op and my options after it...I've gone down hill since being on Levo I'm not feeling better I'm now back to being in bed as my energy levels and headaches/ear pain are worse I also have ME/Fibro colitis ostioathuritis and rhumertoid to...😫😫😫 I know most of these illnesses are auto immune as was my graves I had to have my thiyroid removed due to it being toxic..I'm hanging on till my next blood work on the 6th of Nov to see what happens I will be brining up the subject of being off Levo for six weeks with my GP again as I fear it might make me worse...❤️
The reason you are not feeling well on synthetic T4 is NOT because you don't need thyroid hormone replacement, but either because you are on too low a dose for your needs, or you are not converting it well enough to T3 (in which case the addition of T3 is warranted).
In your case, I'd say the second scenario applies as both your free Ts are low, your FT3 levels even at bottom of range. No wonder you are feeling unwell!
As others have said, don't go off levo, and please try to find a more knowledgeable doctor as you are not likely to ever improve if you keep your current one!
Your free Ts are much more important than your TSH.
He's an idiot and knows absolutely nothing about how best to treat patient who has no thyroid gland at all. I'm shocked. Take a print-out of the following link to him and highlight what this 'expert' states from 'Thyroid Patients" onwards.
Excerpt:
Dear Thyroid Patients: If you have thyroid gland failure--primary hypothyroidism--your doctor is giving you a dose of levothyroxine that normalizes your thyroid stimulating hormone (TSH) level"
I've been going to appointment armed with great info from lovely people like yourself on here and to be honest when I mention T3 and other things they look like rabbits caught in headlights and brush the questions off...I've been going in with light firearms well now it's time for the big guns...thanks again for that info shaws....❤️❤️
T3 was removed from being prescribed without any notice whatsoever (what kind of Superior people who do such a thing) and left those who were well upon it without options except levo and obviously if taking T3 alone they didn't improve on levo.
The majority of professionals doctors have no clue about hypo or how ill we can feel if not on an optimum dose of whatever makes us feel well again.
They withdrew NDT - due to making False Statements about it - and not even taking the most important fact i.e. that it was taken since 1892 without blood tests but slowly increasing the patient's doses. It was a 'grandfathered' prescription all those years and no blood tests. Before that we died.
Their next aim was to withdraw T3 too. It was because the suppliers raised the cost by 2,00% and giving a perfect excuse to withdraw it. Many on this forum who were prescribed were thrown into panic and distress.
Before NDT we died.
Why doctors do not know the very, very basic symptoms - they are so poorly trained and we go to them in all faith hoping they're going to improve our symptoms and some, like you, are far worse! What about those who have no internet access and suffering.
Why did you have TT? If it was for Graves, your TSH may never become normal and your GP should not be using it as a guide to medication levels.
As for suggesting you come off Levothyroxine completely, he is obviously way out of his depth and I beg you to change from him immediately before he does further damage. You have had good replies above so you need to get results as suggested by Slow Dragon and consider adding T3 to your Levothyroxine. I have had TT for Graves and the combination of both is the only way I can function. Firstly, however, you must re-start Levothyroxine immediately.
My TT was due to my thiyroid being very toxic I went in to thiyroid storm was rushed to hospital had a uptake scan and was diagnosed with graves my body had been attaking my thiyroid I had very high anti bodies...this was all done after 6 months of my GP put me on anti thiyroid meds which made me very ill hence the rush to hospital..I was then given a 2 week course of liquid iodine to get my T3 down which was 39.4..my TSH was suppressed I was also on liquid vit D..my surgeon said the thiyroid needed to be removed as their was no saving it...I stupidly thought great no thiyroid I'd be better in no time...how wrong was I...😭😭😭😭😭😭
Go to a better doctor with all your symptoms, test results and medical history. How ridiculous to tell someone who has had TT to stop meds. The results you’ve posted suggest you might not be converting, or maybe you just need a higher dose of Levo. It’s the low level of T3 they need to treat, either by increasing T4 and it converting to T3 or if that doesn’t work by replacing some or all T4 with T3. Your TSH is ‘broken’, your dose can’t be adjusted using TSH to make you well. Good luck.
Sorry you’re still struggling. I know you’ve had one hell of a journey. Looking at your blood results, you need more Levo, not less! It’s early days for you as getting Levo right is often a bit of a journey. If your endo keeps chopping and changing your dose (especially if they are TSH obsessed) you’re never going to get well. Your body has to adjust to the Levo and the T4 needs to reach a level where your body will start to convert a decent amount.
I honestly think you need another endo if that is at all possible. As this one treats by TSH he will be more of a hindrance than a help in your recovery. You deserve better and the last thing you need when you’ve been so unwell is to have to battle with an ignorant endo.
I've not been under an endo he discharge me before my op I've been seeing my surgeon and GP...my last appointment with my surgeon was on the 21st of Sep to which I had a rather heated conversation with him I've been on Levo for over 6 months I'm feeling worse everyday my TSH is not moving my T3 is low and my T4 is just 20% above normal,,he just said I'm afraid I can't help you any more" so I said can you send me back to the endo who I only saw for a brief time before my op,,,he agreed so I'm waiting on that app..my app with my GP was Monday last week he will not budge from only looking at TSH 😡 As I said in another post I asked about adding T3 he dismissed that..I think that discussion about T3 should be made with the endo not the GP...😡😡
Thanks again for your help missGrace hope your doing ok...this illness is hell...👹👹
That's what I thought I got a letter about 2 wk after my op saying he has discharge me... I've only seen my surgeon and gp since my TT.. Its mad.. Well going bk to him.. When I get the appointment. Zzzzzzzzz 😂
They assume that GPs are capable of continuing your treatment. If I were you I'd phone Eno's secretary explaining to them suituation and asking if you could have an urgent appointment with him as you feel so very unwell.
That is a very odd combination of low FT3, low-normal FT4 and next to no TSH. It looks as if you've been on a TSH-suppressive higher dose of T4 for some time, which has not resolved your TSH on taking a lower dose. To suggest you come off or lower T4 "to see what happens" is utterly irresponsible of the doctor. If you are unwell on lower T4, then you'll be worse with none. The TSH is no longer informative because it hasn't't responded to your lower T4 dosing, so that the aim is to get the best treatment for health, not merely for satisfactory (?) biochemical numbers. On your lowered T4 dose, your FT4/FT3 ratio is 4.3/1. This is the very edge of inadequate T4-T3 conversion if not actuallly into that category. So far from not raising T4, you need to raise it sufficiently to get an adequate FT3, even if it means FT4 rising above the top of its range. If at the last you cannot get FT3 up into the higher reaches of its range, whatever T4 you take, then you should be a candidate for dual therapy. T4 + T3.
I think this doctor is criminally ignorant. And, you could be dead in six weeks with any levo. It's already far too low and will drop alarmingly if you come off levo. For your own sake, don't do it. And, further more, you should complain about this doctor for putting your life in danger.
You had a TT for Grave's - I've just been back over your past posts, and at one point, your FT3 was over 31. So, of course your TSH was suppressed. I don't know how long it was at that level, but if it was any length of time, your your pituitary/thyroid axis will have become down-regulated and your TSH will never rise again. This is your new norm: whatever the FT4/3 levels, your TSH will be suppressed. And no amount of wishful thinking or tomfoolery on the part of your ignorant doctor will change that. And, you've got to get that through his thick skull, even if it means screaming his ears. And just saying 'we only go by TSH here' will not save him in a court of law.
So, if you want to save your own life, you've got to do something: changes doctors, self-treat, throw a few pot plants around in the surgery, anything other than stopping your levo for six weeks. I just cannot tell you how angry this makes me.
I'm angry he won't listen to me.. Same doc who took 3 years to realise my thiyroid was failing... He always put my symptoms down to the menupause.. My bloods were only done in Aug 2018 he shouted at me to stop bothering him as my thiyroid was OK.... On the 17th of sep 2018 I got an emergency app with another doc she diagnosed me their and then on symptoms my T3 was overactive from sep to 2 weeks before my op it actually went to 36. 2..or 38.2 can't remember but I was overactive for months before having thiyroid storm and being rushed to hospital... 😭
So, another reason to write a strongly worded letter of complaint to the practice manager. This doctor should not be allowed anywhere near a thyroid patient because he knows absolutely nothing about thyroid and is a danger to his patients. He should not be allowed to continue to treat them.
I would add that any doctor that is going to insist on dosing by the TSH, should at least know how the TSH works! Suspecting a pituitary problem just shows that he has no idea how it works.
First thank you so much for all the info.. I'm taking advice and going to try to get a emergency app with the endo.. You were saying about a gluten diet.... I have colitis some days I have server diarrhea and pain,, I keep to chicken. Veg. I have no fried food I do not drink coffee I have fish veg I try to keep to a clean diet just last week my aunt and uncle came to visit they took me for lunch I had a Sunday roast but had lamb instead of chicken well I was on the loo for 2 days and in agony.. 😢😢😢
My surgery is a nightmare I couldn't even get to see a doctor even when I went in to thiyroid storm I rang saying I was very ill vomiting felt awful that was at 8.30, am it took till 5,30 pm for any gp from the surgery to come out then I was rushed to hospital 😢 I really have no faith in him he's the one who said my thiyroid was OK.... No it wasn't... At the moment I'm in bed and looking threw my paperwork to find my endos number... I've found my letter but he says in it
"we must concentrate on getting her TSH to a normal level... 🙄🙄 So I'm afraid he will say the same as my gp just look at TSH... 🙄🙄🙄
Remember no thyroid hormones, either your own or those supplemented, will be effective if your vitamins and minerals are not optimal - your ferritin is very low isn't it ?
An iron infusion might be the best route, as it will come up relatively quickly.
I was refused an infusion, and unable to take prescribed iron tablets, and it took me over a year to get my ferritin level up to over 70.
Is it a group practice, as another doctor, as you have already experienced, may be better able to help you. ?
They only have 3 doctors and ones a locum... Tbh new doctors don't last long at my surgery... I'm so frightened to move surgerys as I have other illnesses along with the graves think I would be a liability I take a lot of pain meds ect for Fibro, /ostioathuritis/rhumertoid.. also have colitis and ME... Now my right eardrum as sucked in and I'm partially deaf on that side.. Seeing ENT on 4th of Nov... 😭😭😭
i can see that there would of jumping from the frying pan into the fire, when thinking changing to different surgery, but what do you mean by you think you d be a liability?
I have other illnesses and take a lot of medication and now have graves it's the cost that surgery's look at so hench me saying liability I don't pay for my prescriptions... 🤔
i must admit i dont really understand how the finance of it works. some meds they appear to get paid to give you. i dont think ive ever seen a factual doc of how it works
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Why has Levo stopped working?
