Thyroid UK

Undermedicated? Advice please

Hi I am a newbie. I had my dose reduced from 100mcg Levo to 25mcg Levo, diagnosed 2012. How long till I feel better on 25mcg Levo please? Thank you

Result that prompted the dose reduction was

TSH 1.60 (0.2 - 4.2)

Free T4 16.1 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

38 Replies
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Welcome to the forum, Rose18.

Short answer is you will never feel better on 25mcg if you are undermedicated.

Please post the thyroid results and ranges which prompted the dose reduction and if you've had thyroid results checked since reducing to 25mcg post them too and I'll advise whether you are optimally dosed.

Who reduced dose? GP or endocrinologist?

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Result that prompted the dose reduction was

TSH 1.60 (0.2 - 4.2)

Free T4 16.1 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

GP reduced dose

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Rose18,

Did GP say why dose was being reduced?

I suggest you see another GP at the practice in future. There was no need to reduce dose from 100mcg. TSH was within range, even a little high for many people, and FT4 was less than halfway through range and FT3 was lowish in range.

I can only imagine you are very undermedicated on 25mcg.

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Hi no reason given at all.

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Rose18,

Didn't you question why? I sure would if GP tried to reduce my dose to close to nothing.

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I did question it and the GP didn't give me a reason. I won't be seeing her again

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Rose18,

How long have you been on 25mcg?

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I have been on this dose since first week of October 2017

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Rose18,

Then it is time you had a followup thyroid test. Arrange it early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine after the blood test.

If you are very undermedicated consider making a complaint to the practice manager about the reckless dose reduction and the GPs refusal to explain why she felt the reduction was necessary when you clearly were not overmedicated. The GP should be retrained in how to treat hypothyroid patients.

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You may not want to see her again but please write to your practice manager or senior doctor to point out what could be a huge mistake if allowed to continue. It is really important that doctors are educated for the good of future patients!!

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Speechless.

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Rose18

Your post is one we are seeing on a daily basis, but we need more information please.

Why was Levo reduced and who by?

Have you had T3 prescribed and then removed, and why?

Can you please post some thyroid test results, with their reference ranges? As many as you have, say what dose of thyroid meds you were taking at the time and if any changes were made say why.

Do you have raised antibodies - TPO and/or TG - Hashimoto's?

Have you had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Iron panel

Full blood count

If so please post results with ranges and say if you are supplementing.

Oh, and you wont feel better on 25mcg Levo.

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Result that prompted the dose reduction was

TSH 1.60 (0.2 - 4.2)

Free T4 16.1 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

GP reduced dose

and I had thyroid antibodies of

Thyroid peroxidase antibodies 804.5 (<34)

Thyroglobulin antibodies 375 (<115)

I was supplementing but felt no better on what I took so no idea where to go with my latest results for vitamins and minerals will post them

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Rose18

Well, GP is a total idiot. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo, so those results actually show that you could have done with an increase in dose.

Thyroid peroxidase antibodies 804.5 (<34)

Thyroglobulin antibodies 375 (<115)

This is at the root of your problem. Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies 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.

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 can very often result in low nutrient levels or deficiencies so I'm expecting to see some low levels.

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Ferritin 35 (30 - 400)

Folate 2.1 (4.6 - 18.7)

Vitamin B12 205 (190 - 900)

Vitamin D total 28.8 (25 - 50 deficiency supplementation is indicated)

Iron tablets for iron anaemia were stopped in Feb 2017, 5mg folic acid prescribed Nov 2016, taking vitamin D supplement 3000iu as 800iu not doing anything

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Rose18

And there we have them, all dire as expected.

Ferritin 35 (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.

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...

Why were your iron tablets for anaemia stopped? What are your latest MCV/MCHC results - do they still show iron deficiency anaemia?

**

Folate 2.1 (4.6 - 18.7)

Vitamin B12 205 (190 - 900)

5mg folic acid prescribed Nov 2016

What about your low B12? Were you ever checked for B12 deficiency? Check here now b12deficiency.info/signs-an... Be aware that taking folic acid can mask signs of B12 deficiency so think back to before you started it.

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."

I would post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

I think you may need be tested for Pernicious Anaemia and may need B12 injections. They will tell you what needs to be done about the fact that you are taking folic acid if you need further testing.

Also, 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."

**

Vitamin D total 28.8 taking vitamin D supplement 3000iu as 800iu not doing anything

You should actually have been given 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 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/

If your GP wont give you the loading doses, then I would just go ahead and do it yourself and take the equivalent of the loading doses over 4-5 weeks. As you have Hashi's, an oral spray will be better absorbed than tablets or softgels, eg BetterYou who do a 3000iu spray. I would suggest you take 9000iu daily for 4-5 weeks then reduce to 6000iu daily and retest 3 months after starting.

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.

**

SlowDragon's reply to this post contains links and information about helping gut/absorption problems and healing the gut healthunlocked.com/thyroidu...

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Thanks results still show MCV 80.2 (83 - 98) MCHC 386 (310 - 350) and iron tablets stopped because I had iron infusion in 2016. Not checked for B12 deficiency

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Rose18

So those results still show iron deficiency anaemia. You need to point this out to your GP and some haematologists want the patient re-referred for another infusion if ferritin drops below 50. You either need another infusion or iron tablets (2 or 3 x daily). If tablets then take each one with 1000mg Vit C to aid absorption and help prevent constipation and take 4 hours away from thyroid meds and 2 hours away from any other medication and supplements as it affects their absorption.

As far as B12 Deficiency is concerned, check the link I gave you for signs and symptoms and then post on the PA forum as suggested.

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I had a lot of trouble with my iron absorption. No iron supplements seemed to work, even though I was taking vitamin c with it. I have now been using Dessicated Beef Liver Capsules, for 3 mths, and now my iron studies are showing optimal results.

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Big big problem low B12 Folate

2.1 (4.6 - 18.7)

Vitamin B12 205 (190 - 900)

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my understanding is your dose should be high enough to keep your thyroid supressed. Your TSH needs to be in the bottom quarter of the normal range, Antibodies should should come down when a high enough dose is maintained. My consultant put me on 200 and said I may need to stay on this dose, ever since drs are trying to do what you have had done (in my opion some don't have a clue) Ask to see your consultant

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SS asks why the dose was reduced.On the face of it based on just the test results you should not have been reduced.

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Do NOT reduce your dose, see another GP urgently

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...

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Most doctors and endocrinologists seem to not know a single thing about hypothyroidism, except to diagnose when TSH is 10 (in USA it is 3+) and never check Free T4 and Free T3.

All of us on this forum have been on a 'Do It Yourself' regime and have had to read, learn and ask questions.

Doctors adjust doses willy-nilly believing (wrongly) that we will have heart attacks or bone problems if TSH is low but TSH has nothing to do with thyroid hormones which hormones should be optimal. TSH is from the pituitary gland.

When your next blood tests are due, it has to be at the very earliest appointment, fasting (you can drink water) and allow a gap of 24hours between your last dose of levo and the test and take afterwards.

Ask for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Even if these are requested sometimes the lab doesn't do them if TSH and T4 are in range.

Also B12, Vit D, iron, ferritin and folate to be done at the same time.

If you follow the regime above it keeps your TSH at its highest because it drops throughout the day (I don't think doctors are aware of this) and may mean that we may get an adjustment we do not need.

p.s. you must be feeling really awful. If some of the tests above aren't taken, you can get a private test from one of our recommeded labs who do home pin-prick tests (be well hydrated a couple of days before and make sure hands are warm).

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Am told antibodies are negative?

Thyroid peroxidase antibodies 804.5 (<34)

Thyroglobulin antibodies 375 (<115)

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Your results are not negative - they are positive so you have an Autoimmune Thyroid Disease called Hashimoto's. You can reduce the attack of the antibodies on your thyroid gland by eating gluten[-free foods.

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Hi Rose. I am a GP. I cannot understand who you would have been reduced with those results. Those results suggested that 100mcg was the right dose. I suggest you see another GP.

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DrRen

As a GP you must be appalled at the current state of thyroid treatment

This situation can not continue. 100's and 100's of patients completely mistreated and under medicated, often for years, sometimes decades.

Many 100's remain undiagnosed

Frequently dismissed as hypochondriac, or anxiety disorder, but if anyone actually tested vitamin levels they would see severe deficiencies.

Vitamin levels are essential to check for anyone with thyroid condition but especially with Hashimoto's

Do you have any suggestions as to how things can improve.

This is a small charity support group, yet there are over 70,000 forum members and more and more new arrivals everyday due to inappropriate removal of T3 causing severe ill health, and terrible vitamin deficiencies.

Often young women in prime of life. Struck down with long lasting and completely debilitating symptoms, their lives ruined.

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Yes I am and I have been quite vocal on it, often getting pilloried. I have applied to sit on the Thyroid Guidelines re-write committee. I have covered it in my VLOGs, youtube.com/c/drrenee. I cover it in my radio shows often and try and guide patients and arm them with the information they need.

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Dr Ren

Isn't it surprising that the majority of hypothyroid patients on this forum are given abysmal support or assistance from their GPs and also the Endocrinologists. They are palmed off with 'your results are 'normal' when they feel anything but normal.

Dr Toft wrote the following but will the BTA or the RCoP take notice.

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

Several posts this week were far worse than usual and for us who are untrained are shocked at the response (or non response) of doctors.

Doctors or Endocrinologists do not recognise clinical symptoms and many tell patients 'your normal' just because the results are within the the normal range - even the top. They also adjust willy-nilly to keep the TSH at a certain point. Look at the following member's vits/minerals below and no action taken. We had very similar posts within the week in a similar vein.

healthunlocked.com/thyroidu...

We have also had posts from people who are at the end of their tether.

It is a sad indictment of a common autoimmune disease not being understood by the Professionals who don't look at the patient and are incapable of understanding blood test results and don't know any clinical symptoms.

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I am not a GP or Medical in any way, but I do attend Thyroid conferences and would say the dose is possible low especially if Rose is still having syptoms

btf-thyroid.org/information...

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WTF???

How did you feel on 100mg? What the hell was your GP doing lowering the dose AT ALL, your results show that you were NOT over medicated, in fact, he/she could have upped your dose by 25 IF you were still having Hypo symptoms, and as for dropping from 100 to 25 in one go???? Once again WTF????

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I still had hypothyroid symptoms

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Just found this print and take to your Dr btf-thyroid.org/information... Its off the main page

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Incompetent doctor! AACE TSH range is 0.3-3.0. Typically you want FT4 mid-rangeish, and FT3 into the upper quarter of its range. You need to get back to T4=100mcg, then perhaps add a little T3 to boost that FT3. BTW are you on nutritional supplements?

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No supplements at all

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Your results are well within normal limits so why on earth was your dose reduced? Did you have any symptoms of being overactive - weight loss sweaty hands? . Shaking hands if you hold them out straight?? Please go back to your doctor straight away to read results again ( I had a doc think the same until I pointed it out! They are not infallible). If you have a good chemist ask them first and make your appointment urgent! Good luck!

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No overactive symptoms

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