I'd like some advice on my levothyroxine treatm... - Thyroid UK

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I'd like some advice on my levothyroxine treatment.

Cycleboy profile image
16 Replies

I was diagnosed with subclinical hypothyroidism about a year ago - tsh 13 and t4 was 12. I started on 50mcg levothyroxine. Oh, and peroxidase antibody was over 600.

2 months later - tsh 0.81. Continued on 50mcg.

A further two months and tsh 23.2 and t4 was 13.4. Levothyroxine upped to 75mcg.

Most recent test result, after a further two months - tsh 5.52 and t4 is 16.2.

Doctor said that this result is satisfactory and no further action is required, just continue on 75mcg levothyroxine.

As the tsh is above the reference range, I am rather puzzled by the doctor's advice.

I'd appreciate any advice on this matter.

Thanks,

Cycleboy

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SeasideSusie profile image
SeasideSusieRemembering

As the tsh is above the reference range, I am rather puzzled by the doctor's advice.

Well, he obviously doesn't have a clue and doesn't follow the guidelines of keeping TSH in the lower part of the range. Can you change to a doctor who might have even half a clue?

I was diagnosed with subclinical hypothyroidism about a year ago - tsh 13 and t4 was 12.

There was nothing subclinical about that, TSH over 10 = overt hypothyroidism.

The big swings in your test results are due to the fact that you have autoimmune thyroid disease aka Hashimoto's which is confirmed by your raised TPO antibodies. Did you know you have Hashi's? This is where the immune system attacks and gradually destroys the thyroid. Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well. You currently need an increase in Levo - 25mcg now and retest in 6-8 weeks, repeat if necessary until your levels are where they need to be for you to feel well.

When Hashi's is present, due to the fluctuations of results and symptoms, it may be necessary to adjust dose, and readjust when necessary.

Cycleboy profile image
Cycleboy in reply to SeasideSusie

Thanks for the reply, Seaside Susie.

I'll be getting straight back to the doctor to try and get an explanation for the advice I was given.

Also, thanks for explaining why the tsh has been so volatile - I thought I had Hashimoto's but I didn't realise that it could cause such volatility. I had been wondering whether the volatility might have been an allergic reaction to the particular brand of levothyroxine that I had been taking.

Thanks again,

Cycleboy

SeasideSusie profile image
SeasideSusieRemembering in reply to Cycleboy

Some people do react to some brands. Worst offender is Teva but some people do get on extremely well with Teva and find they might react to another brand.

If you know you do well on a certain brand, make sure you get it each time, even if it means checking your pharmacy bag at the counter to see what brand they've given you, if it's not your usual brand then hand it back and ask for your prescription back. They wont accept it back once you've left the shop.

Let us know how you get on with your GP.

To support your request for an increase in Levo, here are a couple of useful articles:

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.

You can also refer to NHS Leeds Teaching Hospitals who 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

Cycleboy profile image
Cycleboy in reply to SeasideSusie

Thanks for all the information.

I'll let you know how I get on with the doctor.

Cycleboy profile image
Cycleboy in reply to SeasideSusie

After receiving your advice on my Hashimoto's thyroid problem, I contacted the doctor and we agreed that the levothyroxine should be increased to 100mcg.

Eight or nine weeks later I had another blood test - 28 hours after my last pill, and I've seen the results online :-

TSH 0.22 (0.27-4.2) outside reference range.

T4 17.1 (11-26)

Doctors note : Abnormal result - need to speak to the doctor.

I would much appreciate your opinion on these results, Seaside Susie.

Thanks,

Cycleboy

SeasideSusie profile image
SeasideSusieRemembering in reply to Cycleboy

They are saying it's abnormal purely because your TSH is below range.

Your FT4 is only 41% through it's range.

The aim of a hypo patient generally, when on Levo, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

Refer to Dr Toft's article which I quoted above.

Are you following the advice about Hashi's?

Cycleboy profile image
Cycleboy in reply to SeasideSusie

Do you think I should stay on current dose (100 mcg levothyroxine) and have another test in a couple of months?

I haven't altered my diet. I haven't gone gluten free or anything.

SeasideSusie profile image
SeasideSusieRemembering in reply to Cycleboy

Graph of daily rhythms of thyroid hormones, first one shows how TSH varies throughout the day. 9am is the best time as we can't get it done between midnight and 3am when TSH is highest:

healthunlocked.com/thyroidu...

Do you think I should stay on current dose (100 mcg levothyroxine)

No, you need to get your FT4 up much higher in the range. But that's my opinion (and Dr Toft's), it wont be your GPs, he will freak out at your TSH level.

I haven't gone gluten free or anything.

It's worth trying a gluten free diet and supplementing with selenium as suggested previously, some members find it helps. Although there are no guaratees, you've nothing to lose and possibly much to gain.

Cycleboy profile image
Cycleboy in reply to SeasideSusie

Thanks for that.

I had my blood taken at lunchtime - I'll make sure the next one is done much earlier.

I'll give the doctor a ring next week - I'll let you know the outcome.

I'll definitely check out the gluten free diet and selenium supplement.

suztango profile image
suztango in reply to Cycleboy

What time did you do the test? TSH levels change throughout the day (highest early morning, lowest around midday ish). Tests should be done in the morning before 9am and fasting.

Cycleboy profile image
Cycleboy in reply to suztango

I had the blood taken at lunchtime,

(1245), after a 28 hour fast.

suztango profile image
suztango in reply to Cycleboy

Ah. That is why you had a low TSH result. That's when TSH is at its lowest. You need to repeat the test this time before 9am and fasting. Once you've done your test you can take you medicines and then have breakfast etc...

suztango profile image
suztango in reply to Cycleboy

In this link there is a bit towards the bottom of the page about the TSH levels varying throughout the day

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

Cycleboy profile image
Cycleboy in reply to suztango

Thanks for all that information, suztango, much appreciated.

I'll feel better informed, when I ring my GP next week, to discuss the results of the test.

suztango profile image
suztango in reply to Cycleboy

No problem :) Just a word of warning, drs / nurses tend to not be aware of the timing of the test being important. (I had to 'educate' the senior nurse practitioner at my GP surgery about this)

Cycleboy profile image
Cycleboy in reply to suztango

Thanks for the word of warning - I'll certainly keep that in mind into the future.

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