Thinking of stopping levothyroxine

[Dani_89]

I am new, I am thinking of stopping my levothyroxine because I feel no better on it and endo has been messing about with my dose reducing me from 150mcg to 50mcg then increasing me from 50mcg to 100mcg and then 100mcg to 175mcg. I have symptoms of bone pain gritty eyes and tiredness and weight gain. Diagnosed 2012. Thanks

[Rapunzel]

Hey Dani

Has your endo reduced and increased in 25mcg steps or all at once? If the latter that's just not wise and may be a reason why you feel so ill. Let us know. Do you have your latest blood test results with the ranges (in brackets) and have D B12 ferritin and folate been tested? How about antibodies?

[Dani_89 in reply to Rapunzel]

Yes I had it reduced all at once. TSH 10.2 (0.2 - 4.2)

Free T4 11.8 (12 - 22)

Free T3 3.0 (3.1 - 6.8)

TPO antibodies 375 (<34)

TG antibodies 266.3 (<115)

[SeasideSusie Remembering]

Dani - well you're going to get very ill if you do stop your Levo.

I'm guessing your endo is a diabetes specialist (most of them are) who plays at knowing all about thyroid treatment when in reality he knows zilch and is messing about with your health.

I'm also guessing you have high antibodies - have you had them tested, post results if you have please.

Can you please post your thyroid test results, with reference ranges. As many as you have got, including your latest, say what thyroid meds you were taking at the time, and if the dose was changed due to the results explain why and what the new dose was. If you don't have your results, please ask for them, it is our legal right in the UK to have them so your surgery can give you a print out of any they have done, and you should be able to obtain any others from your endo's secretary if the surgery doesn't have them.

Also, if you've had vitamins and minerals tested, please post those results, with reference ranges, say if you are taking anything and what dose:

Vit D

B12

Folate

Ferritin

Iron Panel

Full Blood Count

[Dani_89 in reply to SeasideSusie]

TSH 10.2 (0.2 - 4.2)

Free T4 11.8 (12 - 22)

Free T3 3.0 (3.1 - 6.8)

TPO antibodies 375 (<34)

TG antibodies 266.3 (<115)

[SeasideSusie Remembering in reply to Dani_89]

OK, so forget any past results where dose changes have been made then, we get the picture, it's a very familiar story

TPO antibodies 375 (<34)

TG antibodies 266.3 (<115)

Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? Probably not, most doctors attach little importance to antibodies and don't really know what Hashi's does or how it affects the patient.

Hashi's is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares or swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

Dose adjustments should be gradual, usually 25mcg, not 100mcg, 50mcg or 75mcg, that is just stressing your body.

So it sounds very much as though you may have been having Hashi's flares which sent your test results haywire your doctor panicked (because he is totally out of his depth) and changed your meds quite dramatically. Your current results show that you desperately need your meds increased again so go and see your GP and ask for an increase in dose. 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 so you can see how desperately undermedicated you are.

In support of your request for an increase, use the following information from thyroiduk.org.uk/tuk/about_... > Treatment Options:

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.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

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)."

You can obtain a copy of the article by emailing [e-mail] print it and highlight question 6 to show your doctor.

**

Now you have to address the Hashi's by trying to help reduce the antibodies andyou can do that by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Read and learn about Hashi's to help yourself, because your doctors wont:

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

Hashi's and gut/absorption problems tend to go hand in hand and very often the result is poor nutrient levels and I can see from your post below that yours are dire. As I asked and you haven't said you're taking anything, then I assume your doctor has ignored these results.

Ferritin 18 (30 - 400)

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. Y

ou need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

You also need an iron panel and full blood count to see if you have iron deficiency anaemia, which is a distinct possibility with such a low ferritin.

**

Folate 2.0 (2.5 - 19.5) Vitamin B12 193 (190 - 900)

Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an...

Now you need to go over to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc Quote your folate, B12, ferritin (and iron panel/full blood count results if already done), plus any signs of B12 deficiency you may be experiencing.

You may need testing for intrinsic factor to see if you have Pernicious Anaemia, you may need B12 injections, you need a folic acid supplement but that should not be started before any further testing has been carried out.

Whatever they advice on the PA forum, discuss with your GP.

**

Vitamin D 20.7 (<25 severe)

You are severely Vit D deficient and need loading doses - see NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

As your nutrient levels suggest poor absorption and gut problems, I will ask SlowDragon to give her very helpful information and links to help with that.

[Dani_89 in reply to SeasideSusie]

Taking 150mcg levo

[Rapunzel in reply to SeasideSusie]

Dr Stupid Award of the day?? Seaside will take over now Dani, she knows of what she speaks. Don't stop your meds, hun xx

[SeasideSusie Remembering in reply to Rapunzel]

Oh yes, this one might just sneak in and pinch the award. Dose changes of 100mcg, 50mcg and 75mcg, must be a record!!!

[Dani_89 in reply to SeasideSusie]

No increase suggested

[Dani_89]

Ferritin 18 (30 - 400)

Folate 2.0 (2.5 - 19.5)

Vitamin D 20.7 (<25 severe)

Vitamin B12 193 (190 - 900)

[SeasideSusie Remembering in reply to Dani_89]

Commented on above.

[Nanaedake in reply to Dani_89]

Hello Dani, when did you get these vitamin results and what has your GP or Endo done about them? Your TSH is much too high as a result of stupid Endo and now you have vitamin deficiencies which are probably a result of being undermedicated and having your dose reduced/increased by ridiculous amounts. No wonder you feel unwell!! The bone pain is probably a result of pitifully low vitamin D levels. Don't stop taking your levvothyroxine or the vitamin levels may get worse. In fact you desperately need an increase.

Poor you, this really is terrible treatment. Find an Endo who knows what he/she is doing and visit a different GP to get all your deficiencies addressed if you've not already done so. You need to increase levothyroxine by 25mcg at a time. Some people even need to take it more slowly or they feel unwell. Hopefully SeasideSusie will get back to you with vitamins advice.

I really despair. When will the NHS tell all the useless Endocrinologists across the UK that they will be struck off if they treat patients this way? They are causing extreme and unnecessary suffering. I wish someone would subject them to a virtual hormone assault so they actually experienced what it was like to have their hormonal system totally messed up making them severely vitamin deficient.

The sweating and tremor are most likely due to your vitamin deficiencies.

Let us know the eventual outcome.

[Dani_89 in reply to Nanaedake]

Thanks for reply the vitamin and mineral results were done last week and I intend to go back to the GP to ask for better treatment tomorrow.

[Dani_89]

I just don't understand why I am sweating and have a tremor aren't they hyperthyroid symptoms?

[Gr8Nica in reply to Dani_89]

It's most likely reaction to huge dose increase in a short period of time. I had it too.

[SlowDragon Administrator in reply to Dani_89]

Hyper type symptoms are because your vitamin levels are so low you can't easily use your thyroid hormones. In part because of non stop changes in dose, and now under medicated

Plus change in dose should only EVER be gradual, 25mcg at most. This shows your endo knows nothing about thyroid

So you need small increase in dose of 25mcg, retesting after 6 weeks. Likely to need further increase (and/or addition of T3) but essential to get vitamins improved first

Follow SeasideSusie detailed vitamin advice

Eg

healthunlocked.com/thyroidu...

But has your endo never explained about Hashimoto's, unlikely as they obviously know b*****r all themselves

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

Hashimoto's begins in the gut, it causes low stomach acid, malabsorption, low vitamins and food intolerances, by far the most common is gluten intolerance

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 and they seem disinterested in learning.

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

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...

Low stomach acid can often be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

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

You need a new endo.

Email Louise at a Thyroid UK for list of recommended thyroid specialists [e-mail]

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 and most consistent results

[SeasideSusie Remembering in reply to Dani_89]

I just don't understand why I am sweating and have a tremor aren't they hyperthyroid symptoms?

Also can be due to the Hashi's flares and swinging from hypo to 'hyper' as explained in my post above.

[radd in reply to Dani_89]

Dani,

Welcome to our forum.

“Bone pain, gritty eyes, tiredness and weight gain" are a sign of low thyroid hormone - either resulted from too little medicated or enough medicated but not working due to other reasons.

Reducing & increasing thyroid hormone by more than 25mcg is not recommended as the body can only accommodate small dose changes at a time, roughly every six weeks.

You have Hashimotos & high antibodies, that can cause inflammation within the body. This inflammation together with low iron/nutrients can stop thyroid meds from working as they should.

“Sweating and have a tremor “ could be caused by your bodies inability to tolerate such drastic med dose changes, and/or a Hashimoto attack, and/or adrenal gland issues caused by the low thyroid meds. When we take “excess” thyroid meds that our body simply can not tolerate (even if the correct dose for the deficiency) our body can react badly and many Hashi sufferers also have excretion problems (ie can not get rid of the surplus hormone circulating in our blood stream).

Excellent advice above from SeasideSusie

A good read to understand your illness is “The Root Cause” by Isabella Wentz.

[fluffyhat]

Dear Dani,

Please don't stop taking your levo. .as you can see from my post yesterday I stopped taking my levo as like you I was convinced that I was over replaced. Hot, tremors, diarrhoea, shortness of breath, aching all over. It took just one short week for me to become scarily unwell - nhs 24 sent me to A/E last Sat and they wanted to admit me which says it all as acute beds are a scarce resource in a city hospital on a Sat night. The " re entry " process back into taking levo was vile. I learned never to do it again and that I was wrong about bring hyper. ...it turned out my symptoms were due to being hypo - I should also add that I am a very experienced nurse of 32 yrs and I got it really wrong. I think you wouldn't go wrong to take the expert advice that the other posters have suggested. You will feel better in the end. Take goid care of yourself 😀