No Levothyroxine

[Dantej]

Hi how long to feel better on no Levothyroxine at all? Previously taking 150mcg for hypothyroid diagnosed 7 years ago

Thanks

[bantam12]

Well you probably won't feel better if you are hypo and have stopped taking your Levo, care to add some details of why ?

[Dantej in reply to bantam12]

GP says he gives up trying to treat me

[Angel_of_the_North in reply to Dantej]

So he is being negligent and needs to refer you to an endocrinologist.

[EbonyEvans]

Hi Dantej,

Could you give us more information like why you stopped. When you started. Also can you post your last blood results including the ranges? How when were you diagnosed.

[Dantej in reply to EbonyEvans]

GP said he gives up trying to treat me

Diagnosed 7 years ago

[bantam12 in reply to Dantej]

He can't just "give up", if you are hypo you need some sort of replacement and if he can't treat you he must refer you to someone who can.

[Dantej in reply to bantam12]

He says he doesn't believe I take my meds every day

[Angel_of_the_North in reply to Dantej]

So you have a problem with absorption which need to be sorted out, and/or you are on too low a dose. GP needs to test for coeliac and IBS, B12, folate, ferritin and D3 as without those in optimal (not just normal) levels you can't make use of the thyroid hormone.

[Dantej in reply to EbonyEvans]

TSH 8.5 range 0.2 - 4.2

FT4 13.9 range 12 - 22

FT3 3.0 range 3.1 - 6.8

TPO 774 range <34

[bantam12 in reply to Dantej]

You have Hashimotos and need an increase in dose or if you have already stopped you need to get back on it, you are hypo and must take something.

[EbonyEvans in reply to Dantej]

Hi, sorry to be a pain. Were these the last results?

Also have you stopped cold turkey? He/ she should not have told you to stop and he’s negligent. Do you still have Levo left over?

[Dantej in reply to EbonyEvans]

TSH 8.5 range 0.2 - 4.2

FT4 13.9 range 12 - 22

FT3 3.0 range 3.1 - 6.8

TPO 774 range <34

Yes last lot of results. I have Levothyroxine left over and he told me to stop cold turkey

[EbonyEvans in reply to Dantej]

If you are under 60 with no heart problems I would suggest you keep taking them. You are under medicated to have a TSH of 8.5. Your FT3&4 should be near the top of the range and you have something called Hashimotos.

Your Gp needs reporting firstly to the practice manager then once you receive a reply regarding that a higher level.

He is dicing with your health. To take you off your meds and suggest you do it cold turkey is beyond belief.

Please change practice ASAP and get a referral to an Endocrinologist.

I’ll inbox you in a bit. But when the main admins / contributors see this PLEASE take what they say seriously. You’re Gp as I said is negligent and his actions are in excuseable.

[Hidden in reply to EbonyEvans]

in I think

[bantam12]

See another GP, one who knows how to treat patients properly as your current one is dangerous !

[SlowDragon Administrator]

If you stop taking Levothyroxine you would eventually sink into myxodema coma

See a different GP urgently

How long have you not taken any Levothyroxine?

If only a few days start back on dose you were on. If longer you might need slightly lower dose while you recover

You were extremely under medicated to have TSH so high

You dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Bloods retested 6-8 weeks after each dose increase

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

[Dantej in reply to SlowDragon]

GP said he was giving up treating me because he can't control my thyroid condition. I hadn't taken my Levothyroxine for 4 days.

[Treepie in reply to Dantej]

Read slowly the first sentence of the above response of Slow Dragon.

Every cell of your body including brain cells need thyroid hormones .Without it you willgave no life.

[Jazzw in reply to Dantej]

Why hadn’t you taken it for 4 days?

Anyway...

See another GP. They aren’t supposed to give up on you. You need levothyroxine. You will never feel better without it. It’s not a drug, it’s a hormone that your body can no longer make for itself. You’ll get increasingly tired, your stomach won’t work as well, you’ll get bad headaches and aching limbs. I’m assuming you don’t want all of that - so get to a new doctor and take the levo.

[Dantej in reply to Jazzw]

GP said he didn't know why my levels aren't stabilising, thought I wasn't taking my medication when I was and said he gave up trying to help me

[Dantej in reply to Jazzw]

No I don't want to feel worse

[bantam12 in reply to Dantej]

What has been the issue with your treatment to make your GP say he can't control your condition ?

[Dantej in reply to bantam12]

Because my levels have gone up and down and he doesn't know why

[greygoose in reply to Dantej]

Do you mean you stopped taking your levo four days ago? Or do you mean that you hadn't taken levo for four days when he told you that? I'm sure that must be illegal. He can't just abandon a patient with a long-term illness. Not without passing you on to someone who can. That is totally illogical, quite apart from anything else. What he is saying, in effect, is : go away and die. Doctors aren't supposed to do that! You really must complain about him, and start taking your levo again.

Even if you aren't taking it regularly - which I don't believe for an instant, you've got more sense than that - it is not a reason to abandon you. He's admitting his ignorance, he's out of his depth, happens to us all. But, we don't just give up. He wants shooting!

[Dantej in reply to greygoose]

Yes I stopped 4 days ago. I was taking it every day

[greygoose in reply to Dantej]

That's what I thought. So, it looks like you have an absorption problem, and that's why your TSH is still too high. So, what your miserable excuse for a doctor should be doing, is investigating your gut, testing your stomach acid, to see why you aren't absorbing your levo. Could be Coeliac, leaky gut, low stomach acid... But, he'll never know if he doesn't take his head out of his nether regions and actually do something! Report him.

[Dantej in reply to greygoose]

Yes I will report him. Will go to a new GP and be checked for absorption issues

[greygoose in reply to Dantej]

Good!

[SlowDragon Administrator in reply to Dantej]

You can go straight back on full dose then

You could add extra 25mcg or 50mcg for few days to make up 4 days missed doses

T4 is storage hormone

In theory we can take weeks dose in one go

Hashimoto’s makes levels go up and down

Get vitamins tested urgently

Also coeliac blood test before going strictly gluten free

Getting Levo dose up and TSH lower will help too

Read as much as possible about Hashimoto’s

[Angel_of_the_North in reply to Dantej]

If you stop levo, you will DIE (slowly) with dementia. Ask for a referral to an endo or a doctor with a clue and make a complaint to the practice manager.

[silverfox7]

Put a complaint in writing and drop to off for the practise manager. He needs to be reported. Medication when hypo is for life. You may at some point need to increase or decrease but you must never stop treatment. Point that out in your letter of complaint! That doctor is dangerous and needs reporting.

[Angel_of_the_North]

If you need thyroid hormones because your body can't produce them, you might feel better for a while if you stop them as your body does its best to thrash the thyroid into producing what little it can, but you will gradually develop heart problems and dementia and then die slowly. So if you stop taking levo, you need to replace it with T3 or NDT.