Thyroid UK
89,081 members103,626 posts

Hi

I am newly registered and here on behalf of my wife to be. She is 32 and diagnosed with underactive thyroid in 2014. She has never felt completely well on Levothyroxine alone and feels completely unsupported by her family. At work she strives to be the best she can be and whilst her employers are happy with her work and have given such excellent feedback I am worried she is pushing herself too hard since she has been making mistakes and she really does put herself down when this happens since she thinks she needs to be perfect all the time.

She has dry skin all over her nose, face, legs and body. Weight steadily climbing and she doubts she will fit into her wedding dress. Pains in her wrist radiating up to her arm. Chest pain. Heart feeling like it is rolling about in her chest. Memory loss. The difficulty concentrating. Hair falling out in clumps and blocking the plughole. Ears ringing. Cold intolerance. Hair sometimes thin and looking like streamers. Eyelashes moulting and falling out. Eyebrows looking thinner. Eyes puffy and dark. Excessive tearing of the eyes when outside. Dizziness and vertigo in any brightly lit areas. Unsteadiness when getting up early in the mornings. Tiredness during the day.

She takes 100mcg Levothyroxine, has been on much higher doses than this in the past, as much as 200mcg. Yesterday she was told by the GP was she is undermedicated and the GP wants to know why. Her endo has been adjusting her dose quite a lot and she and I are sure that all the above symptoms she has are contributed to the major dose adjustment done in September 2017 from 175mcg Levothyroxine to 100mcg Levothyroxine. She just doesn't understand what the endo is intending to do.

Any advice appreciated.

DEC-17

Serum TSH 5.4 mIU/L (0.2 - 4.2)

Serum Free T4 13.1 pmol/L (12 - 22)

Serum Free T3 4.0 pmol/L (3.1 - 6.8)

5 Replies
oldestnewest

Brief note as I'm about to hit the sack! Her symptoms clearly indicate she is undermedicated. The blood tests tend to confirm this and my guess is the blood results would be much better if she was on about 150 mcg levothyroxine. Hypothyroidism is often caused by Hashimoto's disease, an autoimmune condition which attacks and destroys the thyroid gland. Sometimes whilst this is in progress the thyroid can release extra hormone, this could explain the constant adjustments, although I suspect not. It looks like her endocrinologist may be fixated on blood test results and not paying attention to her symptoms which are more important.

Unless the endocrinologist can give a good explanation for these dose changes I would be tempted to go with the GP rather than the endocrinologist who probably only has expertise in diabetes. I would ask her GP to resume a higher dose and see how she is in a month's time. The only issue is that many patients need some liothyronine also and as it stands only endocrinologists can initate prescribing this. Liothyronine is the active hormone that results from an iodine atom being removed from thyroxine by a process called 'deiodinase'. Sometimes this process doesn't work quite so well in hypothyroid patients and so they need to take some liothyronine. So on reflection maybe best to keep the endocrinologist on board for now.

1 like
Reply

Thanks very much, she tested positive for both TPO and TG antibodies. This has been tested repeatedly and has only been negative once out of 6 times though the time when it was negative was only just negative but both sets of antibodies at the top of their ranges. She has had low FT3 with high in range FT4 on a number of occasions and the endocrinologist has denied her Liothyronine and has said her results before showed over replacement.

TPO antibodies 940.5 IU/mL (<34)

TG antibodies >1200 IU/mL (<115)

Results that showed over replacement

TSH 0.03 (0.2 - 4.2)

Free T4 19.3 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

Reply

'Results that showed over replacement' ???

TSH 0.03 (0.2 - 4.2) TSH is a pituitary hormone, not a thyroid hormone. The pituitary senses how much thyroxine is available and signals the thyroid to produce more if it's not producing enough. Her pituitary is not signaling the thyroid to produce more thyroxine here and this is indicated by the below range TSH. No need to worry about below range TSH if FT3 and FT4 in range.

Free T4 19.3 (12 - 22) FT4 is reasonable and it's in range. It's best in the top third of the range. It is certainly not high above range.

Free T3 3.5 (3.1 - 6.8) FT3 is insufficient as it's low in range, at the bottom of the range and is best in the top third of the range. If the person was over-replaced their FT3 would be above range so higher than 6.8 which it is NOT.

Your wife to be's Endocrinologist is either incompetent, ignorant or deliberately pulling the wool. These results don't show over-replacement at all. FT3 and FT4 are in range and in fact FT3 is low indicating that the person needs a little more thyroid hormone, not less. In fact it shows a certain derrangement of thyroid hormone function because FT4 is satisfactory but there is inusfficient conversion to FT3.

Thyroid antibodies are elevated showing Hashimotos thyroiditis. Has the Endocrinologist explained that?

Thyroid UK’s website information on Hashimotos

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

Read this newly released paper which explains why the current method of treating thyroid disease is inadequate. Give a copy to her Endo.

Professor Toft - Counterblast to Thyroid Guidelines

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

Scientific discussion on individual thyroid hormone regulation - Dec 2017

frontiersin.org/articles/10...

3 likes
Reply

Simple answer is the endocrinologist was probably a Diabetes specialist, certainly didn't recognise that your fiancée had LOW FT3 and needed dose increase or addition of T3. The last thing she needed was dose reduction

Do not see this endocrinologist again. You might consider putting in a complaint

GP is right she is significantly under medicated. She will need to step dose of Levothyroxine back up in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Bloods need retesting 6-8 weeks after each dose increase.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Her 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

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

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

Ask GP to test vitamins urgently. She is very likely to need significant supplements to improve

Gluten Free Diet likely to help or be essential

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

tukadmin@thyroidUK.org

Thyroid UK are collecting evidence of mismanagement of thyroid conditions

Please consider sending a brief outline, once on the road to recovery. Include vitamin results if these are low.

thyroiduk.org/tuk/get_invol...

Typical post where Low vitamins causing low TSH high FT4 and low FT3 - endo incorrectly insists on dose reduced

healthunlocked.com/thyroidu...

Her vitamin levels were absolutely dire

healthunlocked.com/thyroidu...

Reply

It comes as a shock to know most Endocrinologists/doctors do not know best how to treat patients with hypothyroidism. That's why we have more than 70,000+I members.

They are very good at adjusting hormones due to the TSH blood test alone to try to 'fit' the TSH into a range.

I am glad you are a husband who is caring and looking for answers to his wife's condition.

You ask to be referred to a 'specialist' but for hypothyroidism there are 'few' unfortunately.

Having a quick look at your responses I note your wife's FT3 is at the bottom of the range. It should be towards the upper part.

People are prescribed levothyroxine which is also called T4 (hormone). It has to convert to T3 (the only Active Thyroid Hormone). T3 is needed in the millions of T3 receptor cells in our bodies and the brain/heart contain the most.

Unfortunately, people are left to suffer but one of our Researchers and his Team have had a Paper accepted that shows clearly that many need a combination of T3/T4 to feel well.

All blood tests for thyroid hormones have to be at the very earliest, fasting (she can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.

Levo should be taken on an empty stomach with one full glass of water and wait an hour before eating.

You can have private blood tests and we have recommended labs which will do thorough ones i.e. TSH, T4, T3, Free T4 and Free T3 and antibodies. I know your wife has antibodies taken and she has an Autoimmune Thyroid Disease called Hashimoto's. You can read about it on the following link but to help reduce the attack of the antibodies (sometimes issue too much which may make the person feel hyper (still hypo) going gluten-free can help.

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

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

Always get a print-out of results for your own records and you can post if you have a query.

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

Sometimes we do better by doing our own thing with the help of members.

There are other hormone replacements foreby levothyroxine but they have been withdrawn by the NHS but many source their own.

Levothyroxine does suit many as long as the dose is optimal for them and they can convert T4 to T3 sufficiently.

Reply

You may also like...