Thyroid UK
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Newbie - do I give up?

I am having trouble getting my dose right, I am 30 years old, female and I was diagnosed with underactive in 2010 and my current dose is 100mcg levothyroxine. My endo refuses to increase saying my results are not following a particular trend (and thinks I have been overdosing, skipping my medication and taking too little when he looks at my bloods even though they are always taken before 9am and fasting and not taking levothyroxine for 24 hours beforehand as he has advised) and my doctor has not looked at any vitamin/mineral bloods for over 2 months when they were last taken. I am led to believe that I am just a really bad person and all I want to do is be well again in time for my wedding. Please advise I am feeling so very poorly.

JUL-2017 (100mcg levothyroxine)

TSH 0.03 (0.2 - 4.2)

FT4 21.3 (12 - 22)

FT3 4.2 (3.1 - 6.8)

SEP-2017 (100mcg levothyroxine)

TSH 5.38 (0.2 - 4.2)

FT4 13.9 (12 - 22)

FT3 4.1 (3.1 - 6.8)

NOV-2017 (100mcg levothyroxine)

TSH 0.02 (0.2 - 4.2)

FT4 22.8 (12 - 22)

FT3 4.3 (3.1 - 6.8)

JAN-2018 (100mcg levothyroxine)

TSH 4.96 (0.2 - 4.2)

FT4 14.9 (12 - 22)

FT3 3.6 (3.1 - 6.8)

28 Replies
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It is very likely that your endo is a diabetes specialist and doesn't know much, if anything about thyroid disease which is why he isn't right to put the blame on you.

It's also very likely that you have raised thyroid antibodies. Have you had them tested? There are two types, Thyroid Peroxidase (TPO) and Thyroglobulin (TG). Raised antibodies confirm autoimmune thyroiditis (aka Hashimoto's) which is where antibodies attack the thyroid and gradually destroy it and causes fluctuations in test results and symptoms. I imagine that this is your problem and your endo hasn't got a clue about it.

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Yes

Thyroid peroxidase antibodies 3200 (<34)

Thyroglobulin antibodies 275 (<115)

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And there's your answer! Hashimoto's confirmed.

So as your endo seems to be completely completely ignorant about it, you need to read, learn and help yourself where Hashi's is concerned.

Many members have found that a strict gluten free diet can help reduce antibodies, as can supplementing with selenium L-selenomethionine 200mcg daily. Keeping TSH suppressed can also help.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels or deficiencies are the result. Post your vitamin and mineral results and say if you are supplementing, how long for, with what and the dose. If supplementing also say what the level was originally so we can see if you have been prescribed the correct dose.

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Symptoms list - constipation, fatigue, feeling cold, tingling in feet, dry skin, mouth ulcers, heavy periods, puffy eyes, breathlessness, weight gain, joint pain, paleness to skin, depression, ears ringing, memory loss

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Also worried about heart palpitations, will they get worse if I increase medication?

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Piko17,

You're probably getting palpitations because you are undermedicated. They should get better if you increase dose to 125mcg. The dose increase should calm down the Hashimoto's too.

If endo continues blaming you for fluctuating results instead of accepting that its autoimmune thyroiditis (Hashimoto's) causing it write a letter of complaint to the head of endocrinology or hospital PALS and ask to see a different endo.

Take SeasideSusie's advice about the supplements. Low ferritin/iron cause heavy periods and low vitD cause joint and bone pain.

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Palpitations can be due to a few things - 1. a dose which is too low. 2. a low Free T3 (both your FT4 and FT3 are low) 3. Our body doesn't like levothyroxine. Your last blood test shows that your dose is too low as TSH is too high. You might benefit from a T4/T3 combination and Research has shown that many recover their health.

You were diagnosed 7 years ago so, like the majority on this forum, the doctors or endocrinologists didn't do their jobs so we have had to read, learn and ask questions and we can recover. Many also source their additional thyroid hormones and are now well.

I hope you get your health improves over the coming weeks, months.

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Gluten free diet may improve these palpitations.

Or magnesium may help too

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Piko17,

Marvellous how you can be overmedicating and undermedicating at the same time, that can't be easy!

Are you taking Levothyroxine with water an hour before or two hours after food and drink and 2 hours away from other meds and supplements?

Vitamins and minerals don't need testing frequently. What were they when you were last tested 2 months ago?

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I take levothyroxine with water an hour before and 2 hours after food and drink and 4 hours away from other medication and supplements

I have iron monitored every 3 months, folate every 3 months, vitamin D every 6 months and B12 every 6 months since I take supplements

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Ferritin 14 (15 - 150)

Folate 2.1 (2.5 - 19.5)

Vitamin B12 226 (190 - 900)

Vitamin D total 34.4 (25 - 50 deficient. Supplementation indicated)

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Please say what you are supplementing with, what dose, how long for, what the levels were originally before being prescribed supplements.

Also, have you had a full blood count and iron panel to see if you have iron deficiency anaemia?

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Iron anaemia diagnosed 2013, ferritin level was 15 (30 - 400), was taking ferrous fumarate 210mg for 3 years which did not raise levels. Iron infusion done 2015. No iron since then

Vitamin D deficiency diagnosed 2012, vitamin D level was 31.1 (25 - 50 deficient), given 800iu D3

Folate anaemia diagnosed 2015, folate level was 2.3 (2.5 - 19.5) given 5mg folic acid to take once a day

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I find it really puzzling that a doctor can prescribe supplements for deficiencies but does nothing when levels don't improve. Has your doctor said anything at all about your levels not improving? Have you not queried it yourself with your doctor after all this time?

FERRITIN

How much Ferrous Fumerate were you prescribed for the iron deficiency anaemia? Was it 3 tablets daily, that is the normal amount.

What has been done since your iron infusion in2015? Are you under a haemotologist? Have you been monitored? Monitoring is part of the treatment guidelines. Very often haematologists say they want patients referred back to them if ferritin falls below 50 and will repeat the iron Infusion.

You need to ask your GP to treat you appropriately.

Ferritin needs to be at least 70 for thyroid hormone to work. You can help raise it by eating liver regularly, maximum 200g per week.

VIT D

A level below 30 requires loading doses, your GP couldmade given you those as you were only 1.1 above that level originally. 800iu D3 daily will never, ever raise your level, it is hardly a maintenance dose for someone with a reasonable level to start with. You would be better off self supplementing, initially following the loading doses you should really have had and that totals 300,000 over several weeks.

As you have Hashi's you will be better off with an oral spray for best absorption, look at Better You 3000iu spray. Use 3 sprays daily (9000iu) for 4 weeks = 252,000iu in total. Then reduce to 2 sprays daily (6000iu) for 6 weeks, then retest, privately if necessary with a fingerprick blood spot test from City Assays vitamindtest.org.uk/index.html

When you've reached the level recommended by the Vit D Council, which is 100-150nmol/L, find your maintenance dose by trial and error, it may be 2000iu daily, it may be more or less. We need to test twice a year when supplementing to keep within range, April and November are good times.

There are important cofactors needed when taking D3 so check those out here vitamindcouncil.org/about-v... and make sure you take K2-MK7 and magnesium at least.

B12/FOLATE

Why aren't you having B12 injections every 3 months? That is the norm.

You should be investigated for absorption problems because that is the likely reason that your levels aren't improving.

SlowDragon has links and information on how to improve gut problems.

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Doctor has said nothing about my levels not improving, I am not assertive and find it hard to query things with doctors. I was prescribed 3 x iron tablets initially and after infusion nothing was prescribed, no longer under haematologist. I am monitored every 3 months for iron. B12 injections given

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Sorry, but if you want to get well you will have to learn to be more confident and assertive or take someone to your appointments with you who understands what you are going through and can speak on your behalf. Unless you do you will remain ill.

You said in an earlier reply you were having B12 monitored every 6 months as you were taking supplements.

"I have iron monitored every 3 months, folate every 3 months, vitamin D every 6 months and B12 every 6 months since I take supplements".

So if no B12 injections, what are you supplementing for B12?

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Yes I have level monitored and taking B12 injections every 3 months

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Well now I am confused. You've just said:

"taking B12 injections every 3 months"

But your previous reply said:

"No B12 injections given"

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Yes sorry I take B12 every 3 months, the no was a typo

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Complete blood count shows microcytic anaemia

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As mentioned in other reply, you must ask your GP for appropriate treatment or referral to haematologist.

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How often do vitamins and minerals need testing if I am deficient and taking supplements? I am confused

Thank you

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Your GP seems to be doing regular testing but not acting upon the fact that you're not improving. Ask him why.

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Your antibodies are very 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 affect Thyroid hormone working

Your vitamin are absolutely dire. They are not being dealt with correctly

Here's a detailed vitamin supplement advice from SeasideSusie On typical Low vitamins due to under medication

healthunlocked.com/thyroidu...

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 before starting

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...

thyroidpharmacist.com/artic...

Hashimoto's is incredibly linked to gut function. Improving the gut biome is very important

Dr Michael Moseley- Clever Guts Diet

Also

Dr Chatergee new book The Four Pillar plan has simple steps to help improve gut biome

Getting Levo dose high enough to bring TSH down to around one, getting vitamins optimal

Strictly gluten free diet helps gut heal

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

You need a new endo.

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

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Thanks SD, I'm very slow tonight as still no PC, only my tablet.

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Just lovely to have you back "on the case"

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Aww, thanks SD. Not right yet, awaiting MRI, but better than I have been, at least brain functioning a bit better!

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I SECOND THE MOTION !!!!!! YOU WHERE VERY MISSED !!!!!!

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