Is increasing my Levothyroxine safe?: I was... - Thyroid UK

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Is increasing my Levothyroxine safe?

jedi_force profile image
9 Replies

I was diagnosed as having a 'borderline' underactive thyroid in July 2018. Initially I was prescribed 50mcg of Levothyroxine which was then increased to 75mcg following my first set of blood tests. My following TSH test result was 3.4 and I have been taking 75mcg ever since.

Over the last year I have put on nearly a stone in weight and a recent cholesterol test came back high.

I'm quite active (I do a lot of walking) and also decided to join a gym a month ago. I've been going to the gym 3-4 times a week and I've reduced my calorie intake, yet I'm still struggling to lose weight?

I started doing some research regarding thyroid medications, thyroid test results, the effects of goitrogenic foods and diet on Levothyroxine and the effects of hypothyroidism on cholesterol.

My plan was to discuss the research I had done with a doctor. I believe that my weight gain and high cholesterol may be the result of my hypothyroidism.

As there is evidence that supports lower levels of TSH (>2)to be more favourable, I wanted to increase my dose of Levothyroxine to 100mcg and see if this had any positive effect. Then test my TSH levels and cholesterol again in 6-8 weeks.

However the doctor I met with was very negative and told me my TSH levels are normal and said what I had read online was nonsense. When I asked questions he was very defensive, despite offering to show him the information online.

Instead he said I should be taking statins for my cholesterol which I do not want to do as I've seen how bad their side effects were for my mother.

I then asked if I could insist that my dose be increased to 100mcg. He said I could but that I risked cardiac arrhythmia, stroke and raised blood pressure!

His whole attitude really annoyed me and made me adamant I want to increase the strength of my medication, based on my own research but at the same time I obviously don't want to put my health at risk.

Should I get a second opinion or just go ahead and try increasing my Levothyroxine to 100mcg.

Does anybody else have a similar experience of trying a higher dose with favourable results.

Any advice or suggestions would be most appreciated.

Thanks.

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9 Replies
shaws profile image
shawsAdministrator

Change your doctor - that's the first thing to do.

Welcome to our forum and am sorry you are not feeling so good.

Unfortunately, for us, (the patient) doctors seem to have a fixated attitude to the treatment of those who are hypothyroid.

Unexplained weight gain is a common query on the forum but it is due to hypothyroidism and not yet being on an optimum dose of thyroid hormones which suit you.

This is the procedure for blood tests:-

The very earliest appointment, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo (usually taken first thing) and the test and take afterwards.

Always get a print-out of your results, with the ranges for your own records and post on the forum if you have a query.

The aim is a TSH of 1 or lower (not somewhere in range) with a Free T4 and Free T3 in the upper part of the ranges. The 'frees' are rarely tested.

I'm glad you didn't heed this doctor as 'statins' or

" cardiac arrhythmia, stroke and raised blood pressure!"

he's very poorly trained and other members will also respond.

You also need B12, Vit D, iron, ferritin and folate tested. Everything has to be optimum.

The majority on this forum feel better when TSH is 1 or lower (not somewhere in range) and Free T4 and Free T3 are in the upper part of the ranges. Doctors rarely test the Frees but you can get them through one of the recommended labs who do FT4 and FT3 and any other you may wish. They are home finger pin-prick tests and make sure you are well hydrated a couple of days before blood draw if you decide to do so.

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

The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges.

Always get a print-out of the results with the ranges (ranges are important as labs differ in their machines) and it makes it easier to respond.

jedi_force profile image
jedi_force in reply toshaws

Thank you so much for your reply!

I was just so shocked at how negative the doctor was when I asked questions. I was expecting him to discuss the information I'd found and consider the options available. Not shoot me down and practically tell me off.

shaws profile image
shawsAdministrator in reply tojedi_force

The fact is, I think, to do with their training. For instance they are apt not to be aware of any clinical symptoms and if our blood test shows a higher cholesterol, they will prescribe statins. (Not recommended). If they say we're depressed = anti-depressants and so on and on.

When we're on a sufficient dose of hormones then cholesterol level will level out.

They seem to be very poorly trained these days. Maybe just get a half-day course upon problems with the thyroid gland.

Theoretically it seems simple! i.e Diagnose according to the TSH result and wait until it reaches 10 before prescribing levothyroxine. In other countries we'd be diagnosed if TSH is more than 3+.

We have to read and learn from members on this forum and I do feel sorry for those who have no internet connection. Unexplained weight gain is a common query.

As your dose is increased - your metabolism will be raised - and you will gradually be able to lose weight.

SeasideSusie profile image
SeasideSusieRemembering

jedi_force

Unfortunately your doctor is one of many who doesn't understand how to treat hypothyroidism, they are so poorly trained and have no interest in broadening their knowledge.

The aim of a treated hypo patient, generally, when on levo, is for TSh to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

At 3.4 your TSH is clearly too high.

You can use the following information to support your request for an increase in dose:

NHS Leeds Teaching Hospitals say:

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

Note that in your post above you have mixed up > and <.

> means greater than and < means less than, and you've said

"As there is evidence that supports lower levels of TSH (>2)to be more favourable"

when you should say <2.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

TSH alone is not a good indicator of thyroid status, we need at least FT4 to be tested as well, preferably also FT3. If your FT4 and FT3 were tested I'm sure they would be low in range, and it's low T3 that causes symptoms and makes weight loss difficult.

Also, hard exercise uses up T3 so going to the gym is not doing you any favours, and low calorie diets wont either.

You need a 25mcg increase in your dose of Levo now, retest in 6-8 weeks, repeat until your levels are where you need them to be to feel well.

When doing thyroid tests we always advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Perhaps you can see another doctor?

jedi_force profile image
jedi_force in reply toSeasideSusie

Thank you for all of that information, I appreciate your help!

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s?

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Often need to increase slowly....but still likely to need dose as follows in the end

New NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

Post re getting dose increased

healthunlocked.com/thyroidu....

gp-update.co.uk/Latest-Upda...

jedi_force profile image
jedi_force in reply toSlowDragon

Thank you!

hashiman profile image
hashiman

Hi jedi_force

I am currently on 175mcg levothyroxine and my weight has gone from 16st to virtually 18st over the last two years.I started the gym 2 years ago as I was in exactly the same position as you (weight gain and cholesterol) I regularly cycle and also so yoga once if not twice a week. My vitamins are all well in range my TSH was 0.4 (range 0.27 - 4.2) at last test , so optimum and still gaining weight . I have been symptom free thyroidwise for a year or so now but for some reason do still seem to have flareup's where symptoms return for a week or so . I am scared that when I am no longer able to exercise what on earth will happen with my weight ! Recently I have started being really strict with my calories using the Fitbit app (myfitness pal is similar) and I am noticing a real difference I am down to around 17st again now and heading back in the right direction , I am in no way saying your are the same as me but I was eating more than I should be calorie wise.I dont know whether its linked to Hashimoto's but both me and my daughter who has it too can have an absolute raging hunger some days. As stated by the much more learned people than me above,until you feel right with your levo dose you will struggle to lose any weight , once mine was right I still struggled ! I have also started taking Berberine 500 3 times a day which after reading on this forum I believe can help- with cholesterol levels as well as weight , I guess i'll find out at my next blood test in the middle of next month . Good luck with what seems to be a very long journey !

jedi_force profile image
jedi_force in reply tohashiman

Thanks for sharing your experiences.

I'm currently trying to count calories which is something I've never done before and increase my exercise. But I'm aware that until my metabolism is sorted out I'm fighting an uphill battle with my weight.

I'd never heard of berberine, so thanks for the tip. I'll look into that.

Best of luck to you too!

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