Thyroid UK
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Hashimotos or not? Advice please

Hi I am new and could really use some advice please regarding all my results? Diagnosed overactive in November 2011, underactive 2013, overactive again in mid 2017, underactive again in late December 2017. Dose amounts and dose changes against all results. Symptoms are hard stool, tiredness, heavy periods, irritability, memory loss, ears ringing, feeling the cold, puffy eyes and legs, weight gain. Thank you

NOVEMBER 2011 - told overactive

*TSH 5.4 (0.2 - 4.2)

FT4 15.7 (12 - 22)

JANUARY 2012

TSH 2.6 (0.2 - 4.2)

JANUARY 2013

TSH 0.88 (0.2 - 4.2)

*TPO ANTIBODY 840 (<34)

JUNE 2013 - told underactive, to start on 50mcg levothyroxine and then 75mcg and then 100mcg after below results

*TSH 55.6 (0.2 - 4.2)

*FT4 10.2 (12 - 22)

SEPTEMBER 2013 - levothyroxine increased to 125mcg, results on 100mcg showed

*TSH 4.3 (0.2 - 4.2)

FT4 15.3 (12 - 22)

DECEMBER 2013 - levothyroxine 125mcg - no dose increase despite symptoms, results on 125mcg showed

*TSH 4.6 (0.2 - 4.2)

FT4 15.6 (12 - 22)

JANUARY 2014 - levothyroxine 125mcg - no dose increase despite symptoms, results showed

TSH 2.76 (0.2 - 4.2)

MARCH 2014 - levothyroxine 125mcg - no dose increase despite symptoms, results then showed

TSH 1.89 (0.2 - 4.2)

FT4 13.3 (12 - 22)

FT3 4.1 (3.1 - 6.8)

MAY 2014 - levothyroxine 125mcg - no dose increase despite symptoms - levothyroxine stopped, results after stopping showed

*TSH 5.02 (0.2 - 4.2)

FT4 18.3 (12 - 22)

AUGUST 2014 - levothyroxine still stopped, results then showed

*TSH 0.02 (0.2 - 4.2)

FT4 21.3 (12 - 22)

FT3 6.2 (3.1 - 6.8)

*TPO ANTIBODY 171 (<34)

OCTOBER 2014 - levothyroxine restarted 75mcg, below bloods after restarting then showed

TSH 2.56 (0.2 - 4.2)

FT4 15.1 (12 - 22)

FT3 4.0 (3.1 - 6.8)

DECEMBER 2014 - levothyroxine increased to 100mcg, below bloods after increase then showed

*TSH 6.7 (0.2 - 4.2)

FT4 13.8 (12 - 22)

FT3 4.2 (3.1 - 6.8)

FEBRUARY 2015 - levothyroxine increased to 125mcg because of symptoms, below bloods after increase then showed

TSH 3.86 (0.2 - 4.2)

FT4 13.1 (12 - 22)

FT3 4.2 (3.1 - 6.8)

APRIL 2015 - levothyroxine increased to 150mcg because of symptoms, below bloods on increase then showed

*TSH 5.26 (0.2 - 4.2)

*FT4 25.3 (12 - 22)

FT3 5.1 (3.1 - 6.8)

*TPO ANTIBODY >2700 (<34)

*TG ANTIBODY 355.3 (<115)

AUGUST 2015 - levothyroxine increased to 175mcg because of symptoms, below bloods on increase then showed

TSH 1.20 (0.2 - 4.2)

FT4 19.4 (12 - 22)

FT3 4.1 (3.1 - 6.8)

OCTOBER 2015 - levothyroxine reduced to 75mcg, T3 introduced at 1 quarter twice a day, results then showed

*TSH <0.02 (0.2 - 4.2)

FT4 20.6 (12 - 22)

FT3 5.5 (3.1 - 6.8)

DECEMBER 2015 - levothyroxine still 75mcg, T3 still 1 quarter twice a day, results then showed

*TSH <0.02 (0.2 - 4.2)

FT4 20.3 (12 - 22)

FT3 5.2 (3.1 - 6.8)

FEBRUARY 2016 - levothyroxine increased to 100mcg, T3 still 1 quarter twice a day, results then showed

*TSH 0.08 (0.2 - 4.2)

*FT4 22.4 (12 - 22)

FT3 4.7 (3.1 - 6.8)

APRIL 2016 - levothyroxine increased to 125mcg, T3 still 1 quarter twice a day, results then showed

*TSH 6.8 (0.2 - 4.2)

FT4 12.7 (12 - 22)

FT3 4.1 (3.1 - 6.8)

JUNE 2016 - levothyroxine increased to 150mcg, T3 still 1 quarter twice a day, results then showed

*TSH 7.2 (0.2 - 4.2)

FT4 13.3 (12 - 22)

FT3 4.5 (3.1 - 6.8)

SEPTEMBER 2016 - levothyroxine increased to 175mcg, T3 still 1 quarter twice a day, results then showed

TSH 3.85 (0.2 - 4.2)

FT4 18.3 (12 - 22)

FT3 5.0 (3.1 - 6.8)

DECEMBER 2016 - levothyroxine and T3 kept the same, results then showed

TSH 1.76 (0.2 - 4.2)

FT4 15.9 (12 - 22)

FT3 4.5 (3.1 - 6.8)

MAY 2017 - levothyroxine increased to 200mcg, T3 kept the same at 1 quarter twice a day, results then showed

*TSH <0.02 (0.2 - 4.2)

*FT4 38.8 (12 - 22)

*FT3 11.3 (3.1 - 6.8)

*TPO ANTIBODY 904.5 (<34)

*TG ANTIBODY 358.3 (<115)

JUL 2017 - levothyroxine reduced to 150mcg, T3 removed, results were then

*TSH 0.03 (0.2 - 4.2)

FT4 21.1 (12 - 22)

FT3 4.5 (3.1 - 6.8)

SEPTEMBER 2017 - levothyroxine increased to 175mcg after following results

*TSH 5.36 (0.2 - 4.2)

FT4 13.8 (12 - 22)

FT3 4.2 (3.1 - 6.8)

NOVEMBER 2017 - levothyroxine reduced to 150mcg after following results

*TSH 0.02 (0.2 - 4.2)

*FT4 25.3 (12 - 22)

FT3 4.1 (3.1 - 6.8)

JANUARY 2018 - levothyroxine increased to 175mcg after following results

*TSH 4.80 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.5 (3.1 - 6.8)

*TPO ANTIBODY 809 (<34)

*TG ANTIBODY 347 (<115)

18 Replies
oldestnewest

Others more expert will surely comment but it seems to me that you have never been hyper. The fluctuations have been caused by your high antibodies attacking the thyroid leading to the thyroid dumping hormones into the blood leading to lower TSH and higher FT4 and FT3.,which is indicative that you have auto immune thyroiditis or Hashimotos.

TSH needs to be 1 or below and FT3 and FT4 need to be in the upper half of the range.But you also need to have results for ferritin,folate,B12 and D3 as you are likely to be deficient in some or all .

Reply

Hi, thanks. I don't know where to begin with my vitamins, I don't know what to supplement with. :(

Reply

Good grief, someone's been leading you a merry dance! Is this an endo? If so dump him. If a GP then find a new one.

Your raised antibodies confirm autoimmune thyroiditis aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. Antibodies fluctuate and cause fluctuations in symptoms and test results. With Hashi's you can swing from hypo to having hyper-type symptoms - these are "Hashi's flares" and dose adjustment can be made at this time. These flares are temporary and when things settle down readjusting dose can be done.

Doctors attach little importance to antibodies and don't understand how they affect the patient. You should read, learn and help yourself where Hashi's is concerned.

Adopting a strict gluten free diet can help reduce the antibodies, as can supplementing with selenium L-selenomethionine 200mcg, also keeping TSH suppressed.

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. Have you had the following tested

Vit D

B12

Folate

Ferritin

Iron panel

Full blood count

If so please post the results with reference ranges for comment and say if you are supplementing, with what and the dose.

Removing your T3 was a bad move, were you given a reason for this? It will probably have contributed to poor nutrient levels. It is very obvious from your November 2017 results that your conversion is poor and you need T3.

You are currently undermedicated but probably have dire nutrient levels which will need to be addressed before any thyroid hormone will work properly.

2 likes
Reply

Thanks. GP took me off the levothyroxine, the other times have been the endo. I have seen a new GP who says I should never have been taken off the T3 and says I was stabilised on this. A GP at a previous practise also believed T3 would benefit me and he said if he had the authority to prescribe it for me he would. Never had any problems with lactose or gluten like I now do.

The endo who prescribed me the T3 said the T3 had become a red light drug and is only prescribed to those who felt a benefit on it. Despite me feeling great on it the new endo took it away. :(

Yes I do supplement but have no idea what to do about the vitamin levels I have

1 like
Reply

Post vitamins and minerals and supplement information.

If you showed that you benefited from T3 it should never have been taken away. It's so wrong that a new endo can remove it. The reason it has become a red light medication is because the price has sky rocketed and the NHS was stupid enough to pay it rather than source from outside the UK where it costs virtually peanuts.

1 like
Reply

Yes, I dumped the new endo as of tonight. I found him arrogant and ignorant. I have sought the second opinion of a new consultant to override my current endo's request to not increase from 175mcg to 200mcg. Will post vitamin levels now. Just current ones or results from every single test done from 2011 to 2017? I don't mind :)

Reply

You can post them all and we can see if you've had the correct doses given from the start and whether you are on the correct dose now.

I log off at 11pm so I will check back tomorrow to add comments.

Reply

Ok will post a new thread regarding these - I don't want to confuse anyone!

Reply

Include a link back to this thread so members can get this background information rather than asking questions that might be answered here.

1 like
Reply

Will do this. Thank you ever so much

1 like
Reply

Welcome to the forum, Luv2018.

You were underactive in Nov 2011, not overactive.

You have positive thyroid antibodies which can cause fluctuations in thyroid levels. Your GP or endo adjusting your dose to raise TSH when TSH becomes suppressed below range and then increasing dose when TSH becomes high is why your levels are yo-yoing and so unstable. I suggest you try 175mcg/200mcg alternate days and retest in 6 weeks.

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.

Thyroid peroxidase 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_...

Reply

Thanks. Endo is not willing to increase, I have requested a second opinion from another consultant to override this. New GP says I ought to be on T3.

1 like
Reply

Luv2018,

I'd dump your endo. Seems to be a one trick pony incapable of seeing the pattern of your results is due to his/her treatment.

You might challenge the endo taking away your T3. The BTA have said that patients doing well on it should be entitled to continue taking it. See FAQS for patients and GPs in british-thyroid-association...

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Reply

Hi Clutter, I dumped him tonight. I have had enough of his arrogance and ignorance.

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Reply

Luv2018,

Good move. See my comment about T3 and BTA above.

1 like
Reply

You shouldn't have had Liothyronine removed.

Sounds like you have a good GP there. Do they have any suggestions on a good endo?

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 at tukadmin@thyroiduk.org

Also the list of recommended thyroid specialists

Professor Toft recent article saying, T3 may be necessary for many

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

But vitamins must be improved FIRST

Yours have almost certainly been affected by T3 being stopped. It's a common reaction.

Your extremely high antibodies confirm you have Hashimoto's also called autoimmune thyroid disease

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

Low vitamin levels affect 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 gut connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally 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...

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

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Have asked for a second opinion. The new GP cannot understand how Teva can contain acacia, he has said T3 is the way forward for me.

1 like
Reply

It is for many of us. Especially if have Hashimoto's.

You must get vitamins improved as well and most likely need to be strictly gluten free too. You do kit need to have any gut symptoms

See my profile for transformation on gluten free

Reply

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