GP wants to decrease Levo: I currently take 50mcg... - Thyroid UK

Thyroid UK

120,368 members140,113 posts

GP wants to decrease Levo

SusanLaR profile image

I currently take 50mcg of Levothyroxine daily.

My TSH has dropped to 0.03. The receptionist told me that GP is looking to decrease the Levo. Should I ask to be referred to an endocrinologist?

I feel just the same as I have for years. (I am 67) I had no underactive thyroid symptoms but was tested initially about 6 yrs ago when I had high cholesterol.

By the way, when I told GP that I wanted blood taken first thing because of what I had read on your website, she said that different charities said different things and it didn’t matter.

10 Replies
SeasideSusie profile image
SeasideSusieAdministrator

SusanLaR

My TSH has dropped to 0.03. The receptionist told me that GP is looking to decrease the Levo. Should I ask to be referred to an endocrinologist?

I very much doubt that an endocrinologist would see you, they tend to refuse referrals when results are within range and your FT4 is fine.

Your GP is freaked out because your TSH is suppressed. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone).When there is not enough thyroid hormone (natural or replacement) TSH will be high.

If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

What is important is the result of the thyroid hormones - FT4 and FT3, with FT3 being the most important one.

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.

I have had this same scenario/conversation upteem times with my GP. She will only consider TSH, nothing else. However, the Nurse Practioner understands that as long as FT4/FT3 are in range then I'm not overmedicated.

Your FT4 is 83% through it's range which is a pretty good place to be if you feel well.

If your GP insists on reducing your dose of Levo due to your suppressed TSH, point out that your FT4 is within range and reducing your Levo will reduce your FT4 level. To know if you are overmedicated then you will need FT3 testing at the same time as FT4 and TSH, so insist that your GP does that before agreeing to a reduction.

By the way, when I told GP that I wanted blood taken first thing because of what I had read on your website, she said that different charities said different things and it didn’t matter.

Just don't discuss it with your GP, saves an awful lot of hassle. Some doctors agree - the ones who have more understanding of thyroid disease - some disagree and those are the ones who don't know much about thyroid disease.

Doing the test early morning and fasting is what gives the highest TSH which is needed when you need an increase in dose or want to avoid a reduction.

We also advise leaving 24 hours between last dose of Levo and blood test - this is because taking Levo too close to the blood test means that the result will show the dose just taken. Leaving 24 hours then the result shows the normal circulating hormone. This happened to me a couple of weeks ago when a "surprise" thyroid test was included with a load of other tests I had done. It came back that the levels were over range. I explained to the Nurse Practioner that I had taken my Levo before the test so of course it was going to be high. He arranged for a repeat test to be done a couple of days later before I took my Levo and it came back within range.

By the way, your zinc level is very low, I've read that zinc should be half way through range.

Your Vit D is also low, the Vit D Council recommends a level of 125nmol/L and the Vit D Society and Grassroots Health both recommend a level of 100-150nmol/L.

Thanks so much for all that info and making it so clear. I now feel fully informed before seeing the GP.

shaws profile image
shawsAdministrator in reply to SusanLaR

Take to heart SeasideSusie's advice.

Doctors and some endocrinologist treat according to the TSH alone and really have no knowledge of clinical symptoms whatsoever. If our TSH goes very low, they instantly assume we're on too much replacement hormones and reduce our dose to 'fit' us into the range. The aim should be a TSH of around 1 or lower but most of all it should be the relief of symptoms.

thyroiduk.org.uk/tuk/thyroi...

SusanLaR profile image
SusanLaR in reply to shaws

Thanks for that - yes, I really appreciated Seaside Susie's advice.

I went to the GP today and, luckily, it was a locum (very young!). I mentioned this website and he was really interested and looked at it straightaway and wrote down the details in a notebook. I was in a state of shock! He agreed that I should stay on the same dosage and retest in a few months. What a result!

shaws profile image
shawsAdministrator in reply to SusanLaR

If you become symptomatic make an appointment. It is usual to have one every six weeks when newly diagnosed. and TSH is around 1.

I doubt GPs will be interested in our site (but good if he does read the responses). Many GPs seem to believe that once the TSH is somewhere in range that we're on sufficient and don't increase the dose regardless if we're symptomatic.

If you're new to hypo, a blood test is every six weeks following SeasideSusie advice.

You do need more D3. As to levo ,TSH is subject to a circadian rhythm and early morning is advised by members who have been pushed to reduce levo as TSH is higher .But you really need to know what FT3 is taken at the same time as the others as this unlike TSH is the active thyroid hormone.

What was your TSH when originally diagnosed? Some recent research has claimed many on levo do not need it which is a controversial view.

SusanLaR profile image
SusanLaR in reply to Treepie

Thank you for your reply and information- I love to learn facts.

I don’t know my original readings (I’ve only learnt through this site that I have a right to know) but 2 years ago they were:

T3. 4.0 pmol/L. 2.6 - 5.7

T4. 14.4 pmol/L. 9-19

TSH 4.017 mu/L. 0.35-4.94

Treepie profile image
Treepie in reply to SusanLaR

Being on levo then ,you were perhaps not on enough as TSH needed to be about 1 or below.

shaws profile image
shawsAdministrator in reply to SusanLaR

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps prevent doctors reducing our dose to 'fit into a range).

Another strategy you could try is to just avoid the GP and let a lot of time elapse so hopefully they forget or you see a different GP.

If this test wasn't done first thing in the morning, 24 hours after your last dose then you may be able to get a higher TSH result by following that method in future.

You may also like...