Thyroid UK
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Hi I am 24 years old, diagnosed with hypothyroidism in 2011. How long will it take for thyroid levels to stabilise on 50mcg levo? I have symptoms of constipation, puffy eyes, depression, difficult swallowing, dry skin, coldness in feet and toes and on skin, joint pain, muscle cramp, heavy cycles, dry eyes. Thank you

TSH 5.6 (0.2 - 4.2)

Free T4 13.5 (12 - 22)

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Welcome to the forum, Anya1993.

Are they results prior to you taking 50mcg or after?

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After

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You are underdosed with levothyroxine and the reasons?

1. your dose is too low. 50mcg is a starting dose with 25mcg increments every six weeks until TSH is 1 or lower and symptoms resolved.

2. Your Free T4 is low in range when it should be towards the upper part of the range.

3. You Free T3 will also be lower, I believe and that's not been tested.

We have had to read, learn and ask questions on the forum, as the medical profession seem to be so uneducated and haven't a clue of what is the purpose for our thyroid gland.

Ignorant is the proper word to use and that's why we have to many members due to incompetence in treating us till we are symptom-free and feel well. After all it is hormones we lack and Free T3 is the only Active one required in all of our receptor cells.

I would also imagine that your B12, Vit D, iron, ferritin and folate are also low so ask for these to be checked at your next blood test.

I'd request a increase in dose of 25mcg of levo now and after six weeks get another blood test which should be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levothyroxine and the test and take it afterwards.

This is the procedure to following when getting blood tests for thyroid hormones. If you have never had thyroid antibodies tested ask for these to be taken at your next blood test.

Always get a print-out of your results for your own records and post for comments.

We can get well but it would seem to be it is not forthcoming from those who are supposed to be knowledgeable but aren't.

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Thanks I had my dose dropped from 200mcg levothyroxine with bloods of

TSH 1.66 (0.2 - 4.2)

Free T4 15.9 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

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I supplement but feel no better and levels haven't improved either

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If doctor reduced your dose (why?) You have another inexperienced doctor, unfortunately.

When we are diagnosed as hypo and given levothyroxine, the aim is a TSH of 1 or lower (not higher) and both FT4 and FT3 HAVE to be towards the upper part of the range, not middle or lower. FT3 is the most important as it is the only Active Thyroid Hormone required in our millions of T3 receptor cells. You do not have sufficient.

Ask for an increase in levo and tell him you've had advice from the NHS Choices for help/advice on dysfunctions of the Thyroid Gland, Thyroiduk.org.uk and tell him you need a TSH of 1 or below. With FT4 and FT3 in the upper part of the range.

Also get B12, Vit D, iron, ferritin and folate tested next time as all of these have to be optimal as well. Many doctors wrongly think that if any result is 'in range' their job is done. No it isn't. You have to teach the doctor (which is ridiculous).

On this forum we aren't medically qualified but most have had the same runaround as you've had.

Blood tests for thyroid hormones have always to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps keep the TSH at its highest (in the hope doctor would adjust unnecessarily.

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GP reduced dose saying he didn't want me going overmedicated

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He is ignorant and we cannot get overdosed unless we take too much thyroid hormones. If we took too much we'd have sensations of being hyperthyroid. In fact your TSH could go to the bottom of the range 0.2.

The fact that the Frees are:-

Free T4 15.9 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

FT4 should be in the upper part of the range as should FT3. T3 is the only active thyroid hormone, we need sufficient and our brain and heart need the most and all of our receptor cells need T3. T4 - levothyroxine is inactive and has to convert to T3.

thyroiduk.org.uk/tuk/testin...

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Ferritin 11 (30 - 400)

Folate 1.7 (4.6 - 18.7)

Vitamin B12 144 (190 - 900)

Vitamin D total 10 (<25 severe)

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What has your doctor suggested with regard to the above dire results?

Has he begun to supplement as all of these will contribute to your symptoms.

I will add in SeasideSusie re your results. She will respond when she reads them.

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Anya1993,

You are undermedicated then and should ask your GP to increase dose.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

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Thanks am I ok to increase now as I am due thyroid bloods next week?

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Anya1993,

Why are you having a blood test next week? How long ago was the previous test done?

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Previous test done 3 months ago

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Anya,

Either wait until after your blood test to increase dose or, increase dose now, and delay blood test for 6 weeks.

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Get blood test before increasing. Ask for all of those above as you may find they've just done a few but not all.

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Anya

Have you had thyroid antibodies tested - Thyroid Peroxidase and Thyroglobulin, if so were they raised?

Please post your vitamin and mineral test results and say what you are subscribed.

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TPO antibodies 704.5 (<34)

TG antibodies 455.3 (<115)

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Ferritin 11 (30 - 400)

Folate 1.7 (4.6 - 18.7)

Vitamin B12 144 (190 - 900)

Vitamin D total 10 (<25 severe)

Ferrous fumarate taken since 2013 (3 tablets) folic acid since 2016 (5mg) vitamin D since 2014 (800iu)

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When were these tests done and what has your GP said or prescribed for these? They are all disastrously low. You'll get good advice from Clutter and SeasideSusie.

800iu vitamin D won't even help a mouse, let alone a human with your critically low levels. You need an urgent appointment to see a GP at your practice and point these low levels out to them. If no action has been taken on these I should think you'd have grounds to complain to the practice manager.

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Anya1993

This is at the root of your problem:

TPO antibodies 704.5 (<34)

TG antibodies 455.3 (<115)

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.

I imagine that your results have maybe shown low/suppressed TSH and high/over range FT4 at some point which resulted in our dose being lowered.

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 hyper type 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.

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 which we can see with your results.

Are these your current levels or the original levels before supplements prescribed? If they are the original levels, it would be helpful to know the current levels to see what impact supplement has made.

Ferritin 11 (30 - 400) Ferrous fumarate taken since 2013 (3 tablets)

To be taking 3 x FF daily you must have been diagnosed with iron deficiency anaemia. Are you under a haematologist?

If this is your current level, has no doctor ever said anything about the fact that after 4 years supplementing you still have this dire ferritin level and, presumably, you still iron deficiency anaemia?

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Folate 1.7 (4.6 - 18.7) Vitamin B12 144 (190 - 900) folic acid since 2016 (5mg)

What about B12 injections? Have you had intrinisic factor antibodies tested? You could have Pernicious Anaemia. You need to take these results to the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

Also qoute your ferritin result and your iron deficiency anaemia information, and mention any signs of B12 deficiency you may be experiencing from the list in this link b12deficiency.info/signs-an... and mention that you have Hashimoto's.

Folic acid can mask signs of B12 deficiency so you need to think back to before you started taking it. Also, B12 is supposed to be started before 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."

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Vitamin D total 10 (<25 severe) vitamin D since 2014 (800iu)

Again, if this is your current level, has it not occured to your GP that 3 years of supplementing with D3 hasn't done much for you? With severe deficiency, and your particularly dire level, you should 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/

Please clarify if this is your current level. If it is you need to ask for those loading doses immediately. If not, please say what your current level is and I can suggest what dose you should be taking.

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.

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As you say your levels haven't improved, I think you should ask your GP to arrange investigations into malabsorption.

**

For thyroid hormone to work we need optimal nutrient levels. Your levels have been trashed by your Hashi's, so you need to address the Hashi's as suggested above, but you also need to address the gut/absorption problems that Hashi's brings. Please check out the reply by SlowDragon to this post, it contains information and links which will help healthunlocked.com/thyroidu...

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These are all my current levels and I am no longer under haematology. I still have anaemia. Intrinsic factor antibodies never tested and never had B12 injections given. Thanks

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Anya

OK, so considering that you've been supplementing for years, you need to take this up with your GP.

If you feel this is something you can't do on your own, take someone to your appointment with you, we are less likely to be fobbed off if there is a witness. Do you have a supportive partner of family member, someone who can speak up for you and, if necessary, demand that something is done. I hope you do, if not then you must be assertive enough yourself to get this sorted.

To leave your levels like this for so long is particularly negligent of your GP and worthy of a complaint I think. In fact, I would see a different GP in the practice.

For your ferritin you need an immediate iron infusion so ask for one. I would also ask for a re-referral to haematology. Have you had an iron infusion in the past? Some haematologists request that the patient is re-referred if ferritin falls below 50. If this is the case with yours, you must ask why you weren't referred back.

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 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...

When your level has improved, continue to eat liver regularly to maintain it.

If you continue taking iron tablets, then take each one 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.

I have linked to the NICE summary for treatment of Vit D deficiency, you can visit the website and print off the relevant information then ask your GP why you haven't been given the loading doses. Make sure you are prescribed them, don't leave the surgery without the increased prescription.

And now I would urge you to post on the PA forum as suggested, they can give you guidance on what you need your GP to do about your B12 level, any further testing, injections, etc.

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I will take my partner with me for the appointment. Yes I had iron infusion done in January last year

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Anya

Good, so ring up in the morning and get an urgent on the day appointment. Please come back and let us know what happens.

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Thanks I will and have posted on the PA forum

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You GP should be ashamed to have allowed you to exist with such appalling levels for thyroid and vitamins. Another example of someone who needs retraining.

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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

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

Low vitamin levels stop Thyroid hormone working

So it's essential to get these sorted but also to take enough Levothyroxine to keep a TSH low (under 1) and FT4 near top of range and FT3 at least half way in range

Your GP was worried because 200mcg is quite a large dose. But some people do just need larger dose (we are all different)

But also with Hashimoto's because the gut is badly affected you can struggle to absorb

Taking Levo with vitamin C can improve absobtion

ncbi.nlm.nih.gov/pubmed/246...

tireoide.org.br/media/fotos...

Your results showed you were UNDER MEDICATED when he reduced your dose

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 - brilliant article just published

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

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