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Thyroid UK
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Endo says I don't need thyroid medication anymore

Hi, I am new to the forum and I am 24 years old. I feel very alone at the moment. My endo has said since my levels look overdosed I don't need thyroid medication despite being diagnosed 5 years ago with hypothyroid with a TSH of 45.2 (0.2 - 4.2) FT4 10.3 (12 - 22) and started on 25mcg levothyroxine Out of every single day I have taken levothyroxine only one day did I ever feel normal and that was when I was only 25mcg!

I was started on T3 2 years ago by a very good endo since my FT3 was constantly at the bottom of the range and I seemed to become more underactive after times of illness and stress and I continued to have frequent dose changes, more up than down until eventually I was on 175mcg levothyroxine. My endo was happy my levels were stabilised on just 75mcg levothyroxine and 10mcg T3 and she was happy to increase all the way up to 175mcg levothyroxine with the T3 but that all changed when a new endo was assigned to my care when the good endo left.

So this endo I am now with reduced my levothyroxine by 25mcg and took away my T3 and he is now saying I don't seem to need any thyroid medication any more.

My symptoms are mainly headaches, swelling in neck, hard stool, pins and needles in feet, toes and fingers, joint and back pain, periods flooding the bed sheets and towels, tiredness, loss of appetite, deafness, ears ringing, burning in fingers, cold intolerance, skin feeling cold to the touch, flaky and blotchy skin, zero libido, weight gain. The weight gain used to be something I was proud of because a few pounds here and there wasn't going to hurt but now it's becoming worrying especially since I have now possibly grown out of my wedding dress which I will be wearing next February.

I feel that my social life, personal life and life at work is failing because of what my endo has said and I really am feeling at a loss as to what I need to do . Any ideas please?

Thank you

NOV 2017

TSH 0.02 MIU/L (0.2 - 4.2)

FREE T4 21.7 PMOL/L (12 - 22)

FREE T3 4.2 PMOL/L (3.1 - 6.8)

TPO ANTIBODY 376 IU/ML (<34)

TG ANTIBODY 259.3 IU/ML (<115)

17 Replies
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You have to sack this endocrinologist as he will only cause you to have more problems.

You have an Autoimmune Thyroid Disease called Hashimoto's and it is the commonest form of hypothyroidism and treatment is the same.

Do you have your blood tests at the very earliest time possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test?

The British Thyroid Association has stated we should not have had T3 removed if we've been taking it for a while. What they did say was that a conversation should take place to consider (as it has become exorbitant in price) removal/reduction. You haven't been allowed to consider. I think they must be masochistic and not really understand what effect a reduction in hormone has in our body but I would report him for telling you that you didn't need thyroid hormones.

You can help reduce the attack of the antibodies on your thyroid gland by eating gluten-free food.

Some people have sourced their own T3 but you'd have to put up a new question and ask for a private message to be sent to you as no information is permitted on the Forum.

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Thanks I always leave a gap of 24 hours between levothyroxine and blood draw, have it early and I fast. I also have low vitamins of ferritin 5 (15 - 150) folate 1.4 (4.6 - 18.7) vitamin B12 137 (190 - 900) vitamin D 10.2 (<25 severe)

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What has your doctor or Endocrinologist prescribed for your low levels of vits/minerals. I shall add SeasideSusie re advice on these dire results.

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Thanks nothing given

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Yinka_19

I also have low vitamins of

ferritin 5 (15 - 150)

folate 1.4 (4.6 - 18.7)

vitamin B12 137 (190 - 900)

vitamin D 10.2 (<25 severe)

When did you get these results? Has your GP or endo seen them? Why is nothing being prescribed?

You need to make an urgent appointment with your GP to discuss them and get the appropriate treatment which should be along the lines of

ferritin 5 (15 - 150)

Low ferritin can suggest iron deficiency anaemia. You need an iron panel and full blood count.

Your doctor wont know but 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.

You 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 also 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...

Once your level is improved, you will need to maintain it either by continuing to eat liver regularly or a suitable iron supplement.

If iron deficiency anaemia is confirmed, then treatment should be:

NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

**

vitamin D 10.2 (<25 severe)

Severe Vit D deficiency requires loading doses of D3 - 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, do not accept a prescription for 800iu, it must be the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at 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/

Your doctor wont know, because they are not taught nutrition, but 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 you have Hashi's, when you buy your own supplement (and you will need to supplement for life, keeping your level at that recommended above), for better absorption you should use an oral spray such as BetterYou.

**

folate 1.4 (4.6 - 18.7)

vitamin B12 137 (190 - 900)

Folate and B12 deficiency, these are seriously low. Check for signs of B12 deficiency here b12deficiency.info/signs-an... then you need to go and post on the Pernicious Anaemia Society forum (please don't ignore this advice like so many do) for further advice healthunlocked.com/pasoc

Quote your folate/B12/ferritin results, iron anaemia information if you already have it, mention any signs of B12 deficiency you may be experiencing from the link I've given, and mention the fact that you have Hashimoto's.

You probably need intrinsic factor antibodies testing, you most likely have Pernicious Anaemia and you certainly need folic acid prescribing for the folate deficiency. If folic acid is prescribed, it's important that any further investigations and B12 are started before the folic acid.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

**

Whoever has ignored these results has been seriously negligent. Please see a different GP and get appropriate treatment/investigations sorted. Then give very serious consideration to making a formal complaint against the GP who has ignored these results, you wont be the only one who he is mis-treating and these doctors need to have their shortcomings pointed out to them before they make someone seriously ill.

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Thanks Shaws....I didnt know the Thyroid Association had said that. Very useful -do you have the reference or link to that statement? Be very grateful for it. I only ask as it would be good to show my GP. Ive been summoned to my GPs to discuss my ndt....After taking it on script for years, backing of NHS Endo & private doctors etc. ...they want to take me off it!! Sigh.....

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The relevant links are the first three links on this page :

british-thyroid-association...

Be aware that the BTA website has been repeatedly offline in recent weeks, so you may wish to download copies of the documents, just in case you can't access them when you want to.

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Thanks Humanbean. Much appreciated 😊😊👌 My appointments tomorrow. Needless to say I shall refuse to come off Ndt.

Really dont know what we'd do without this amzing site.....theres always people on here in the know.

Sorry for butting in on this post!!

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BTA response to Consultation

british-thyroid-association...

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

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Thanks Slow Dragon. Makes fir a very interesting read.

Am feeling well armed for my GP consultation, many thanks to the three of you sending me info.

Feeling guilty though that this slightly hi-jacked this post. My apologies. I will set up a separate post to report outcome with GP tomorrow.

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The BTA wanted to removed NDT from the list and to do so it seems they made False Statements about it that Dr Lowe rebutted. He sent three yearly reminders asking for a response to his Rebuttal and they never did respond to him before his death. They obviously had no intention to,

considering that it is the original thyroid hormone replacement and world-wide people have recovered their health.

thyroidscience.com/Criticis...

I'd also make an appointment to see your local MP. He can talk to Lyn Mynott after the holidays and I believe Lyn also takes NDT.

If you read quite far down on this link you can see what Lyn states about T3 - refer to two dates 17/01/2017 and 30/11/2017:-

thyroiduk.org.uk/tuk/newspa...

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Thanks Shaws. 😊😊😊 Bless you both! Its a complete nonsense.....I keep thinking it cannot get any worse in the uk re thyroid treatment....and then it does! Words fail me Lol.... The uk must be the laughing stock of the world. How the NHS accept such absurb price increases and then effectively takes it out on their patients is beyond me. You'd think in these days of austerity they would stop accepting mad massive price hikes from greedy suppliers.

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There should be a 'proper' investigation into their charges. They cannot bleed the NHS dry and also by making the costs so high the patient will be prevented from being prescribed and not allowed to recover their health.

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Low levels of vitamins don't help the Thyroid but when optimal they will. So read the advice of Seaside Susie. Your FT4 is high but your FT3 low but addressing the vitamins will improve this a lot. You need both FT4 and FT3 in the top third or even the top quarter of their respective ranges! Optimising these vitamins will do this but it can take time depending how low you are. They also help your body generally as well and as levels rise they will hopefully get rid of some of your thyroid symptoms that are caused my vitamin deficiency so a win win situation. Hope you soon start to improve.

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You say 'blotchy skin'. You might like to look at this recent post. Go down quite a way to MaryF 's question about blotchy skin.

healthunlocked.com/thyroidu...

And I agree with Shaws - sack this endocrinologist.

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So new endo is probably just a Diabetes specialist. Certainly doesn't know anything at all about Hashimoto's

You need to get these dangerously low vitamin levels corrected ASAP

These are a direct result of having your T3 stopped

Low vitamin levels stop Thyroid hormones working. This is why your blood tests suggest (incorrectly) that you are over treated. You are not you're very hypo

Make an urgent "on the day" appointment with any GP and show these vitamin test results

See this reply by SeasideSusie on vitamin supplements advice

healthunlocked.com/thyroidu...

These are also typical posts by others after T3 was stopped

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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

Low vitamin levels stop 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

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...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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 articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please consider sending a brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would definitely include the dire vitamin levels that are direct result

thyroiduk.org/tuk/get_invol...

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Makes you wonder why they don't measure blood sugar in a well-controlled insulin-dependent diabetic and say "Look, your blood sugar is normal, you don't need insulin any more."

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