Thyroid UK
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Fluctuating thyroid results...endo says he has never seen this before

Hi I am 30 years old and new to the community. My endo and I are having trouble stabilising my thyroid levels.

I was diagnosed with underactive thyroid in December 2012 with the below results

TSH 44.8 (0.2 - 4.2)

FT4 10.2 (12 - 22(

I was immediately started on Levothyroxine. Through the years I never felt completely better until August 2015 when my first endo put me on a trial of T3 after establishing a conversion issue on 175mcg levothyroxine:

TSH 1.20 (0.2 - 4.2)

FT4 19.3 (12 - 22)

FT3 4.1 (3.1 - 6.8)

She reduced my 175mcg levothyroxine to 75mcg and added in 10mcg T3. My levels then stabilised on 75mcg levothyroxine and 10mcg T3 in October 2015:

TSH <0.02 (0.2 - 4.2)

FT4 20.8 (12 - 22)

FT3 5.6 (3.1 - 6.8)

However after this time my levels then went underactive requiring monitoring every 6-8 weeks.

In June 2017 my care was taken over by a different endo who removed my T3 and reduced my levothyroxine from 175mcg to 150mcg. My bloods in September 2017 were

TSH 0.03 (0.2 - 4.2)

FT4 25.3 (12 - 22)

FT3 4.0 (3.1 - 6.8)

TPO antibody 904.5 (<34)

TG antibody 4000 (<115)

I told him I did not feel completely well despite him asking me to reduce so he agreed to keep my dose at 175mcg. My results in December 2017 were then

TSH 4.80 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.5 (3.1 - 6.8)

My endo called me after these results came through saying he can't understand how my levels can vary so much on the same dose. I take my levothyroxine on an empty stomach and I leave 1-2 hours before food and drink; all bloods done before 9am, fasting and leaving off levothyroxine for 24 hours and I take no other medications.

Bowels more sluggish than before, tiredness, toes constantly cold, pain in joints, dry skin, low concentration.

Is my endo missing something? Am I really just an anomaly as he suggests?

Any help would be appreciated, thank you.

28 Replies
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Pity you no longer have the other endo who seemed to understand how to treat you. This one is an idiot if he doesn't understand that you have high antibodies and therefore you have Hashimotos which causes levels to go up and down. You need to go on a gluten free diet. Also you need vitamin levels checking as hashi's trashes everything. If your B12 Vit d, ferritin, iron and folate levels are low you won't feel great. Your TSH levels are too high should be below 1 and your T3 is woeful and is the most important result s it is the active hormone used by every cell in your body.

If you can afford private blood tests take a look at Medichecks or blue horizon for finger prick tests, try thyroid 11 or twelve they should include Vit D Results usually back in a week. Post on here for further advice.

Have a look at posts by Seaside Susie on here re vitamins etc and what supplements to take.

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Thank you, I have results of vitamin and mineral levels, they were done Dec 2017, do I post?

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Yes do post results

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Dec 2017

Vitamin D total 60.1 (50 - 75 suboptimal) taking 3000iu D3 with K2 MK7 since March 2017

Folate 2.0 (2.5 - 19.5) restarting folic acid

Ferritin 21 (15 - 150) iron taken away May 2016 after infusion

Vitamin B12 262 (190 - 900) first B12 injection given January 2018

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It may be worth posting these vit results across on the pa community.

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Folate, ferritin and B12 are all far too low for someone with Hashi's. I know doc will just say they are OK cos they are in range but that's no good. They know nothing about vits, diet, absorption/leaky gut issues caused by Hashi's. Your Vit D could do to be higher, good you are taking K with it. Do look at Seaside Susie/ Once your levels of vits improve, could take a while, should begin to feel a bit better. Bets of luck

PS typical they take your iron away after an infusion. Doc has No idea about investigating why it has dropped again. B12 usually only given 3 monthly, useless!!

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Haematologist wants ferritin above 50 and vitamin D above 75, surely there's a problem? Do I go back to haematology? Also heavy periods?

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VitD needs to be at least 100 - Ferritin around 75 for thyroid hormones to work in the body. Sounds as if you have Iron anaemia ad this should be treated. Have you had a Full Iron Profile done recently ? Also a FBC - Full Blood Count.

Frankly I would self medicate if you want to increase levels - many here do.

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Iron 7.2 (6 - 26)

Transferrin 13 (12 - 45)

MCV was just in range 83.1 (83 - 98)

MCHC 365 (310 - 350)

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I have not had any issues with iron so am not experienced enough to comment. If you type - Iron levels - into the SEARCH Thyroid UK Box earlier posts will appear with solutions/advice - possibly thousands of them ! Choose one that catches your eye :-)

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Thyroid.about.com has some good information, too, as does lef.org/protocols (Lef is a bunch of bio geeks who want to live long and healthy lives and tell anyone who'll listen how to do the same. They also sell stuff, but their info is free - - and has loads of footnotes with links to solid peer-reviewed research.)

If they want you to supplement with iron, check Lef under anemia for information on the various versions; some are really hard on the gut. Also, the amino acid lysine apparently boosts iron absorption.

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Was taken off iron due to iron infusion in 2016, GP says one iron tablet enough. Thanks

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"My endo called me after these results came through saying he can't understand how my levels can vary so much on the same dose. "

As your endo says, he/she doesn't understand. Ditch the clown find someone who does understand, not someone drawing salary under false presences.

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No ...its your endo who is clueless ...you need that t3 your results in 2015 were perfect

Its likely you have hashimotos and antibody flares cause trouble ..insist on being back on t3

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TPO antibody 904.5 (<34)

TG antibody 4000 (<115)

Not sure if Hashimotos

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Absolutely POSITIVE for Hashimotos ....

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Definitely raging Hashimotos find an endo who knows what he is doing

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Have you ever had a thyroid untrasound?

I have, basically, a dying thyroid with a bunch of nodules, a couple of which are trying to make up the difference.

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I had 3 ultrasounds on the thyroid, please see details of them below

1st ultrasound (2012) - thyroid gland mildly vascular and enlarged. Lymph gland involvement

2nd ultrasound (2013) - thyroid normal size and shape, lymph glands slightly affected

3rd ultrasound (2016) - thyroid gland enlarged, coarse patches throughout, hypoechoic

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Sounds as if you're just about due for another.

I know I am, but need to persuade the GP.

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Ellie94,

Your thyroid levels are fluctuating because you have Hashimoto's attacking your thyroid gland and because your endo appears to be adjusting your dose according to your TSH level. You are undermedicated on 175mcg to have TSH 4.80. The goal of of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range so sufficient T3 can be converted from T4. Patients with Hashimoto's may do better with TSH suppressed <0.1 which will reduce thyroid activity and make the thyroid less of a target for Hashimoto's. Supplementing 100mcg-200mcg selenium daily can also help support the thyroid gland.

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 endo.

Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

Hypothyroid patients are often deficient or low in ferritin, vitamin D, B12 and folate so ask your GP or endo to do blood tests. Low vitD in particular can cause joint and bone pain.

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Ferritin 11 (15 - 150)

MCV 78.5 (80 - 98)

MCHC 366 (310 - 350)

Haemoglobin estimation 114 (115 - 150)

Iron 4.6 (6 - 26)

Transferrin saturation 12 (12 - 45)

Folate 1.2 (2.5 - 19.5)

Vitamin B12 177 (180 - 900)

Vitamin D total 20.4 (>25 severe)

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Ellie94,

You have iron deficiency anaemia, folate and B12 deficiency, and severe vitamin D deficiency. What treatment has your GP prescribed?

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Hi nothing prescribed

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Ellie94,

You should make an appointment with a GP for treatment and make a complaint to the practice manager that no-one from the practice contacted you about treatment for your results.

Deficient ferritin, iron, MCV and haemoglobin means you have iron deficiency anaemia. Treatment is usually 3 x 210mg Ferrous Fumarate. Take each tablet with 1,000mg vitamin C to aid absorption and minimise constipation. Iron should be taken 4 hours away from Levothyroxine.

B12 and folate are severely deficient. GP should initiate B12 injections 48 hours prior to you being prescribed 5mg folic acid daily. Investigation should be done as to whether you have pernicious anaemia causing deficiencies. Symptoms are listed in b12deficiency.info/signs-an... healthunlocked.com/pasoc are the experts on PA, B12 and folate deficiencies if you need more advice.

Vitamin D is severely deficient as noted on the lab report. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maintenance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.

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Your first endo had the right idea

2nd one was an idiot. If they had no idea about Hashimoto's then likely a Diabetes specialist

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 affect Thyroid hormone working

Your vitamins are all much too low BECAUSE your T3 was taken away and then Levo dose reduced as well

Surprised you are still functioning

You will need to supplement like mad to improve

Typical posts after T3 stopped showing vitamins crashed out

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

You are now under medicated

Low vitamins due to under medication

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Also look at healing gut

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

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...

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 include the dire vitamin levels

thyroiduk.org.uk/tuk/get_in...

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 print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

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

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

But you will need to increase Levo dose first enough to bring TSH down to around one and FT4 towards top of range

Vitamins will need improving

Highly likely strictly gluten free diet helps or is essential

Then if FT3 remains low then look at adding small dose of T3 back in

Thyroid UK have list of recommended thyroid specialists, some are T3 friendly

Also look at joining Improve Thyroid treatment campaign on Facebook

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