Thyroid UK
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Refused levothyroxine

Hi I am a new member. I am 18 years old and I have been refused levothyroxine by my endo, he has said I no longer need it and he has discharged me. Have no idea what next to do about this. Diagnosed 2011. Thank you.

TSH 41.8 (0.2 - 4.2 mIU/L)

Free T4 12.1 (12.0 - 22.0 pmol/L)

Free T3 3.0 (3.1 - 6.8 pmol/L)

57 Replies
oldestnewest

How odd. I've never heard of a thyroid spontaneously repairing itself. And he cant even say that your blood results are 'within range' because thats an outrageous TSH. Do you have symptoms? Have you been tested for antibodies?

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Plenty of evidence to support the repairing of thyroid nowadays thank god she can go off it. Most ifnus never needed meds just stress management's and better food planning

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For sure - but by 'spontaneous' I meant 'without any help' and I'm not sure it will just get better on its own. However if Hashimotos is the cause it can be quite hunky dory between attacks for a while.

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Elizalee What were your results when your endo made the decision to stop your Levo? Surely not those in your above post?

When was your Levo stopped?

Do you have any results (with ranges) that you can post, along with dose of Levo, showing any changes in dose, and tell us why the dose was changed.

Have you had thyroid antibodies tested - TPO and TG - do you have autoimmune thyroid disease aka Hashimoto's.

Have you had vitamins and minerals tested and are you on any supplements - if so what and the dose?

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Those were the results my endo stopped my dose on and they were taken 3 weeks ago. No changes to dose.

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Elizalee That's crazy! The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. Your TSH is massively over range, your FT4 is 0.1 within range and your FT3 is below range.

Do you have any Levo left? If so, if it was me, I would resume taking it, make an urgent appointment with your GP, and tell him that such a high TSH, and such low Free Ts, would give you a diagnosis of hypothyroidism so you can't understand why your endo stopped your Levo. Hopefully your GP will know more than your endo.

Take a look round Thyroid UK's main website (this is their forum) and in particular thyroiduk.org.uk/tuk/about_... and under Treatment Options you will see

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

Booklet written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It is published by the British Medical Association for patients. Available from pharmacies and Amazon for about £4.95. It might be worth buying, highlighting the relevant section to show your GP and Endo (if you decide to stick with him!

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

So there you have it, TSH needs to be low in range and Free Ts high in range, exactly the opposite to what you have now.

Look around the rest of the website, work down the purple menu on the left hand side.

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Thanks yes I have levothyroxine left. I will retake it. Endo said my symptoms of tremor/sweats/weight loss/insomnia are not hypothyroid

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Endo said my symptoms of tremor/sweats/weight loss/insomnia are not hypothyroid

Welll they are in a way, but they are because of your Hashi's - autoimmune thyroid disease - which causes swings between hypo and hyper. Those are symptoms that you would experience when going through a hyper phase. More information in reply to your other thread with your vitamin/mineral and antibody results. I think this just proves how little your endo knows about treating thyroid disease and his total ignorance of autoimmune thyroid disease.

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Hi. I was diagnosed 5 years ago and was stable on 75 mics of levo for 3 years until I went hyperactive and it took more than six months to stabilise. I had brain fog, anxiety and palpitations. Just goes to show how strange this disease is!

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I think. This. Happened. To me as I was stable. For. Years. I caught. A virus. And affected. My. Adrenals. And it's. Taken. Me. Virtually. This. Whole. Year. To stablize been the worst year ever

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Your Endo and doctor should be struck off - for putting patient in danger when they are hypo and not prescribing levo.

What would someone do if they had no access to the internet.

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I totally agree with you

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I totally agree with you! The Dr and Endo need to have their licences removed! ... Apart from all the other advice you need to get an impartial second opinion .. I would also look for legal advice too as your Endo obviously does not know what he's talking about and IS putting your health at risk and if he's doing to you, who else is he doing it to!!

I would also put in a formal/documented complaint to the NHS about the Endo and your GP supported by any documentation you have, KEEP EVERYTHING you get from the complaint process as 'evidence' as it were for if you intend to go the legal route, be a bit clever with it too, give them enough rope as it were.

They say your symptoms are not HT related? Well what are they related to then? Have they sent you for further tests/investigations to find out what it can be? Even though your TSH is in the 40's??

The way I sort of understand the blood levels you have is that your Thyroid is having to be stimulated by so much TSH to get the amount of T4 etc into your blood .. Not sure if that's correct but that's how I see it ...

PLEASE DO NOT lie down to this, get a second opinion, seek legal help as it's Endo's like that whom pull a ridiculous salary out of the NHS, titleing themselves as 'Specialists' when they have no idea what they are doing and make people worse!! I'd even write/contact some news papers, CH4 news about it!! If I was your dad I'd k I knock his jaw out of place and happily settle for the conciquences!!! Shame you can't put a name to people on here, as in my opinion it should be so they can ALL be named and shamed as they are deceitful, untrained cowards who rip off the NHS with no thought what so ever for their patients .. Not the forums fault, there are rules etc forbidding them to allow that ..,

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Have had vitamins and minerals tested and I believe they are what are causing my symptoms

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Your TSH is at least 40 times what it should be, meaning that's the amount of stimulating hormone needed to get the low levels of T4 into your blood to be converted into T3, the levels of which are below and out of range! ... The Endo's involvement/diagnosis of it all is shocking, incompetent and dangerous to your health to say the least! His findings and conclusions are in SERIOUS need of review .. You potentionally could end up with full blown Myxedema that can put you in coma, potentionally putting you into a potentionally fatal 'Thyroid crisis' you need to ACT Elizalee and fast!!!

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We have to have everything 'optimal' thyroid hormones, vitamins and minerals.

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I've yet to find. A doctor. In South. Africa. Who. Knows. How. To treat. Patients it's. Soul. Destroying

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7jaie, why do you use full stops between every pair of words? It makes your posts very difficult to read.

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This. Is a new. Phone. And I can't figure. Out. Why. It's. Using. Full. Stops. When. I use. The space. Bar. It's. Annoying. The heck. Out. Of me Too!

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I totally agree and I would make a formal complaint all the way to the very top (GMC) until it was resolved to my satisfaction ...... shocking!

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I agree. I cant believe your endo would stop your meds with those levels. Defintley keep taking

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😡 outrageous!

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It's possible you have a secondary autoimmune disease like Masttocytosis. Too many mast cells which produce hives and night sweats and insomnia. I take cytomel in addition to levothyroxine because I cannot produce t3 which converts to t4. Along with the Paleo diet I feel almost normal. Now if only my hair would grow back😉

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That is ridiculous. TSH way over. And barely registering T3 and T4. Unbelievable.

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Because I'm flabbergasted, just checking - that definitely is a

TSH 41.8 (0.2 - 4.2 mIU/L)

rather than 4.18? (Still no reason to discharge you but relatively more understandable given the way that most endocrinologists tend to conduct their practice).

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Yes 41.8

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Please put a call in to your GP to discuss this - that TSH is so unaccountable that it's hard to believe your endocrinologist didn't misread the result or that there's been a transcription error somewhere.

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Crickeys. I’m also seeing a Rheumatologist and she saw my thyroid panel last week and she flipped at 41 (I was already on levothroxine) and said to up the dose. T3 and T4 were (barely) in range. Can we say he’s an idiot on here?

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GP and endo believe the symptoms I show are not hypothyroid so took me off levothyroxine.

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Is there another GP in the practice you can see?

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Hi yes there is

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There is something wrong with these people who should definitely not be called 'doctors' - charlatans might be better.

thyroiduk.org.uk/tuk/about_...

Follow the advice above and see a different doctor or you would have to go to the A&E. You will have to put in a complaint to the Medical Authorities.

Tell the other doctor you've taken advice from the NHS Choices for help/advice Thyroiduk.org.uk and have been urged to get levothyroxine. I think as you've been taking it previously, a dose of 100mcg might be o.k.

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We keep reading about more and more people being discharged by their Endo and being sent back under the care of a GP. Is this just another NHS cost cutting exercise or are they so overwhelmed with diabetics ?

Elizalee your treatment is deplorable and heads should roll. Hope you have support at home and for your next GP visit. Do let us know how you go and keep asking questions here. 😊😊

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I've also noticed an increase in people being denied treatment for hypothyroidism because they are thin or anxious or stressed or have a fast heart rate, or being denied treatment for hyperthyroidism because they are fat.

We now have a medical profession in the UK that is happy to diagnose or refuse to diagnose on the basis of stereotypes. Lucky us.

lynmynott Are you aware of the things I've just written? When you deal with NICE and the guidelines, could these stereotypes be debunked?

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Agree 😊

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Yep. Years ago my GP refused to test me as she said I was too thin. Then finally she tested and had the gall to ring me to say I needed to see her urgently as I was hypo. Yeah. Been like that for years Dr!

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I think a very significant proportion of Endos should be retitled Diabetologists .....

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how are you functioning with a TSH of 41?

i had an endo tell me to stop meds for 6 weeks to see if i improved but no way was i going to stop taking them

i thought hypo meds were for life

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I think I am just running on adrenaline

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Please be careful with adrenals - they can be difficult to sort. When are you going to your Doc again ? Could you take lots of VitC to support them 😊 - not your Docs - your adrenals !!

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Going to doctor tonight about symptoms and results. I have tried taking vit C but it makes my stomach heavy

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Hope all goes well with the Doctor. You have a great deal to talk about.

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You could try Solgar Ester C

It's more gentle than standard vitamin C

amazon.co.uk/Solgar-Ester-C...

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They have probably kicked in in order to support you in some way.

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Mine was as high as this as recently as 3 weeks ago. I wasn’t doing well though.

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Are these your current blood results?

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Yes

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How did your appointment go with the GP last night ?

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I have posted an update

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Sorry, just seen your reply. If these bloods were tress weeks ago then current guidelines mean that you should be treated. Your TSH needs to be in range for you to be euthyroid.

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What I've read here is quite shocking. As others state, don't hesitate returning to another GP with those results. Forget the Endo. Get a 2nd opinion soon. No remotely responsible doctor will refuse treatment to anyone with a TSH of over 41. Fact.

For eg., I tried to wean myself off Levothyroxine in 2010, but failed. My TSH shot up to 44+. I was told by my GP in no uncertain terms (more so, politely scolded) that if I allowed this state of affairs to continue by continuing to stay off Levo, then serious health risks were unavoidable, including a likely heart condition.

As I felt awful anyway, that was enough to get me back on the medication, though eventually over time I did manage to reduce my dose safely from 100 mcgs daily to 75 mcgs. - Good luck!

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You should see another doctor without delay, preferably one who has no connection to your current doctor...!

I cannot believe any reasonable doctor would leave a patient with a TSH of 41 untreated...most doctors care only about the TSH and refuse to treat patients before it's out of range, but yours is, which makes this even more incredible...!

I am pretty certain another doctor would see things differently and prescribe the T4 you obviously need! As a last way out, you can order thyroids meds online without a prescription (you can ask for details in private messages). But first I'd recommend you try seeing a another doctor, as your labs clearly indicate your are hypothyroid and need treatment! As others have pointed out, thyroid hormone replacement is usually for life as hypothyroidism is a permanent condition.

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Stop the madness is a great resource. I wonder if ndt would help you. With those numbers I don't think the t4 alone was doing the job anyway. Also your doctor is doing an excellent job of not helping you at all! Find a good doc and don't stop looking until your symptoms are resolved. Better to get a handle in this disease while you are young. So sorry your doc treated you like that. Horrible.

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Take it from someone who had their thyroid just burst back to life twice that if your endo and second opinion say you don't need it, you don't need it. The thyroid can go through a process of inflammation and then recover. It may mean you need it in the future but you should have annual bloods to keep track. I was in A&E last week with hyperthyroid symptoms after being on levo for two years. I had a heart rate of two hundred and was extremely ill my TSH was only 2.75 but I came of the meds 75mcg and my heart rate is recovering and I am no longer feeling as though I am going to die! I had postpartum throiditis but even a viral bug can cause inflammation of the thyroid and then it go onto recover.

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Elizalee, I'm fairly new on here but even I can see you are hypo,can your endo read, it makes me so wild to hear about drs dismissing you, my dr is useless, I think these negligent 1s should have dr toft article thrust up their nose, and forced to read it and change their attitude, but of course that's me being silly, try and see the other dr and if that one is no better make a complaint which I'm about to do with my own dr, hope you get seen soon and sort it all out, thank god for this forum ☺️

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You one of the lucky ones indeed be grateful as this stuff is evil so now rebuild your thyroid there is so much info out there now compared to 25 years ago when i was put onto it. And wasnt necessary at all.

Ive suffered my entire adult life because of doctors instead if looking deeply into nature

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Try Thyrovanz! It's a natural desicated thyroid supplement and you don't need a prescription to get it. Thyrovanz.com There is a facebook group also. This what I just started taking and a lot of other people are having great results. So far it seems to be working well for me too.

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