TSH Rising with increased dose of Levothyroxine?! - Thyroid UK

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TSH Rising with increased dose of Levothyroxine?!

CJT110814 profile image
19 Replies

I was diagnosed in Jan 2015 with an underactive thyroid. My antibodies were checked at the time and nothing was of note. My TSH at the time was 25. The range is 0.2-5.

Since Feb this year, my dose has changed and with each increase, my TSH has also increased!

Feb 16 - TSH 1.9 (levo 50mg daily)

July 16 - TSH 2.1 (levo 50mg daily)

August 16 - TSH 3.1 (alternating 50/75 doses daily)

Sept 16 - TSH 3.4 (75mg levo daily)

I have now been put on 100 mg daily and asked to retest in Nov. My GP Admitted that my levels should not be increasing with levo increases and that if the pattern continues, she will refer me to see an endo.

I am at the end of my tether. I am hopelessly trying to lose weight, pretty much always tired.

I have started to take my levo at night as I was taking it alongside omeprazole and sertraline which I understand can interfere. I have also started to take a multivitamin + iron, B complex and High dose vit D.

Can anyone please help? I dont know what to do :(

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CJT110814
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CJT110814 profile image
CJT110814

To add following checked in March 16:

B12 - 311 (range 211-911)

Serum Folate - 13.1 (range 3-14.4)

Ferritin - 41 (Range 15 - 290)

Vit D (dont have results to hand but GP sad they were borderline and to take OTC supplement)

SeasideSusie profile image
SeasideSusieRemembering in reply to CJT110814

CJT110814 Are you supplementing for your low B12, ferritin and Vit D? I answered your previous post two months ago and mentioned getting your vitamins and minerals checked but you never came back, and it looks like those tests were done 6 months ago.

Thyroid hormone can't work properly unless Vits and Mins are at optimal levels, which yours aren't with those results, and ferritin needs to be a minimum of 70.

CJT110814 profile image
CJT110814 in reply to SeasideSusie

Yes, I am currently taking multivitamin + iron, B complex and High dose vit D as stated above to supplement my low levels and have been taking them for approx 2 weeks.

SeasideSusie profile image
SeasideSusieRemembering in reply to CJT110814

CJT110814 Unfortunately multivitamins are a waste of time as they usually contain too little of anything to do any good and frequently the wrong type which would be the cheapest and least absorbable. You definitely need a decent, separate B12 and a decent iron supplement.

If you'd like to list what you're taking I'd be happy to check them out (and I'm sure others would too) and suggest if you could do better.

Also, what was your Vit D result? You can take too much and send your Vit D too high which isn't good as excess is stored. And are you taking Vit D co-factors K2-MK7 and magnesium?

humanbean profile image
humanbean

Your doctor's idea of an increase isn't the same as mine.

You started in February on 50mcg Levo per day. It took your doctor seven months to increase your dose to 75mcg. There was no justification for the alternating 50/75 she put you on in between, you should have had a 25mcg increase rather than 12.5mcg then.

Most people on thyroid hormones feel at their best with a TSH of around 1 or less and to achieve that you need more Levo. Your doctor has been too timid over the last few months.

Perhaps the 100mcg Levo will do the trick. But don't be surprised if you need yet another increase.

How do you feel?

Has your Free T4 and Free T3 ever been measured?

Do you take the omeprazole for any other reason than indigestion and heartburn?

CJT110814 profile image
CJT110814 in reply to humanbean

Thanks for your reply humanbean.

TBH, I have found my Dr poor in regards to my thyroid. I have regularly gone back to them with feelings of exhaustion weight gain/inability to lose weight, depression, brain fog and its only on my suggestion have they upped my levo.

My pre-diagnosis TSH (family history) is 0.69 and I have asked if we can suppress my TSh to this point.

I feel a little better but the dose increase has only been for approx 14 days so could be placebo effect. I certainly don't feel like the walking dead as soon as I get up but it comes on after a few hours.

They have been measured but I dont have those results to hand.

No, purely for the indegestion

humanbean profile image
humanbean in reply to CJT110814

First of all, never use the word "suppressed" about TSH to a doctor - if you do you will make them nervous and give them a reason to lower your dose of meds.

0.69 is not suppressed, it is in range. I can never remember what "suppressed" is officially, but being within the reference range is not suppressed. The result has to be substantially below the range to be suppressed.

Doctors prescribe omeprazole (a proton pump inhibitor - a PPI) or similar drugs for patients who complain about indigestion and heartburn, suggesting they have too much stomach acid and it should be suppressed.

In the real world outside the surgery, people produce less and less stomach acid as they get older, and yet more and more people take PPIs and indigestion remedies as they get older, thus reducing their low or non-existent stomach acid even further. This doesn't make any sense, but doctors ignore it, and keep on telling the fairy tale about patients having too much acid and prescribing PPIs.

PPIs have lots of highly undesirable long term effects, but getting off them is vital for good health.

Unfortunately, PPIs are "addictive". When people stop taking them there is a rebound effect and people get dreadful indigestion - much, much worse than anything they ever had to start with, and it can take quite a while to settle back down again. The only way to get round the problem is to wean yourself off them slowly and use alternative methods of dealing with the indigestion. PPIs should never be stopped cold turkey.

articles.mercola.com/sites/...

Do a search for "How to wean off omeprazole" - there are loads of articles available on the subject.

Getting off PPIs is only half of the problem. If you don't produce enough stomach acid then you will still have indigestion, so you need to know how to overcome the problem. Some helpful links on the subject from the scdlifestyle website - the links are fairly short and to the point :

scdlifestyle.com/2012/06/hy...

scdlifestyle.com/2012/03/3-...

scdlifestyle.com/2012/03/ho...

scdlifestyle.com/2013/10/4-...

Chris Kresser explains in a lot of detail why acid reflux problems arise for most people in the first place. He doesn't mention hypothyroidism, but his method of dealing with the problem applies to hypo people.

1) chriskresser.com/what-every...

2) chriskresser.com/the-hidden...

3) chriskresser.com/more-evide...

4) chriskresser.com/how-your-a...

5) chriskresser.com/how-your-a...

6) chriskresser.com/get-rid-of...

SeasideSusie profile image
SeasideSusieRemembering

CJT110814 Have all your blood tests been taken at the same time of day and under the same circumstances ie very first appointment of the day, fasting from the evening before (water only) and Levo left off for 24 hours?

Only if circumstances are the same each time can they be compared like for like as TSH would be highest in those circumstances but reduces as the day goes on and after eating.

CJT110814 profile image
CJT110814 in reply to SeasideSusie

Yes all done on the same day but not advised to fast or skip levo.

SeasideSusie profile image
SeasideSusieRemembering in reply to CJT110814

What time of day were they done?

CJT110814 profile image
CJT110814 in reply to SeasideSusie

No idea.

SeasideSusie profile image
SeasideSusieRemembering in reply to CJT110814

Well, in that case I don't think you can rely on those TSH results or compare them. They can only properly be compared if conditions are like for like. What you need now is a new thyroid function test done at the first appointment of the day, fasting and no Levo for 24 hours. And you really need FT4, FT3 would be a bonus, plus antibodies testing as mentioned in your previous thread, then you'll get a proper picture.

CJT110814 profile image
CJT110814 in reply to SeasideSusie

I cannot get another test for a month and the GP is only testing TSH (and FT4 if the TSH is out of range).

The condiitons would have been like for like on those results

SeasideSusie profile image
SeasideSusieRemembering in reply to CJT110814

But if they were not done at the same time of day each time then you can't compare them.

You can get a full thyroid function test to include TSH, FT4, FT3, TPO and TG antibodies through Blue Horizon, a fingerprick prick test to do at home, that would give a full picture which your GP doesn't seem willing to do.

greygoose profile image
greygoose in reply to CJT110814

Susie means, at what time of day was the blood taken. You must surely know that, no?

humanbean profile image
humanbean

TSH has a circadian rhythm. It is at its highest in the middle of the night and at its lowest in the afternoon. If you have TSH testing done at 8am for one test, then the next test is done at 3pm, you can't compare the results and expect reliable conclusions to be drawn.

Look at the graphs on page 2 of this paper.

press.endocrine.org/doi/pdf...

Another thing that mucks up testing is taking your levo 12 hours before for one test, and in another test take it 3 hours before. If your doctor suddenly decided to test your Free T4 then it makes a big difference when you had your previous dose of Levo.

Conditions need to be as similar as possible for every test we have - although I understand it can be very difficult to arrange this, and we just have to do the best we can.

How to have a thyroid function test

Timing : Arrange it for as early in the morning as possible, preferably no later than 9am.

Levo - if you usually take it in the morning : The day before the test take your levo 24 hours before you are due to test. On the day of the test take your levo after the blood has been taken.

Levo - if you usually take it in the evening : The day before the test take your levo in the morning instead, 24 hours before you are due to test i.e. take it early. On the day of the test take your levo at the normal time.

Fasting - On the day of the test, don't eat or drink before the test, apart from water which should be drunk freely. Being dehydrated is not a good idea.

If you stick to the above conditions every time you have a test you can then make sensible comparisons between different tests.

CJT110814 profile image
CJT110814

greygoose - I would imagine either first thing or in the late afternoon.

SlowDragon profile image
SlowDragonAdministrator

As SeasideSusie says multivitamin is almost certainly a waste of time, but if also has for example iodine in it, it could actually be making things worse.

How much Vitamin D are you taking? Recommended we also take magnesium and vitamin K2 when taking high dose vitamin D. Also essential to retest to check not too high (we can not get rid of excess)

Your B12 is too low - hardy surprising as on PPI. We nearly all have low stomach acid when hypo (GP's commonly misdiagnose as high acid) suggest you follow humanbeans excellent advice on how to address that.

Long term PPi's also lead to low magnesium.

gov.uk/drug-safety-update/p...

Low stomach acid also contributory factor leading to low B12.

drmyhill.co.uk/wiki/hypochl...

SlowDragon profile image
SlowDragonAdministrator

Usual advice on ALL thyroid tests, (home ones or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water)

If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

TSH varies considerably according to time of day. Like cortisol, it has a circadian rhythm.

Therefore need to test as near to same time of day as possible with each blood test, if wish to compare like with like.

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