Some advise

[tichangel]

Hi everyone I’m just after some advise please. I’m due to have my bloods repeated for my thyroid as my last test showed that my medication needs to be reduced, according to the GP? Problem is my symptoms are still there and hasn’t improved at all so I really don’t want it lowered. Is it worth getting reffered to an Endocrinologist? I’ve never seen one before so don’t know if it would be beneficial at all? If anyone can please advise I would appreciate it so much!

[Lalatoot]

You need to post your blood results and ranges so we can advise. As well as TSH, Ft4 and Ft3 you should have your B12, fit D, ferritin and folate levels checked.

[SeasideSusie Remembering]

tichangel

Many members have had disappointing consultations with endos and ended up worse than before. However, endos do have a habit of refusing referrals if results are within range.

If you would like to post your last results, with reference ranges (as they vary from lab to lab) we can comment and maybe help you with the way forward. It's very likely that your GP is only looking at TSH and not the actual thyroid hormones FT4 and FT3 which are the most important results.

If you don't have the results then just ask at your surgery's reception desk for a print out, here in the UK we are legally entitled to our test results. Don't accept verbal or hand written results as mistakes can be made, make sure it's a print out as that will contain the correct information.

When having thyroid tests we recommmend:

* 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 will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

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

[tichangel in reply to SeasideSusie]

Thank you so much for your replies, your advise and tips. I have been trying now for two days to attach my blood test results, but cannot find anywhere that gives me the option to attach anything? Can someone please help - how do I add my results if I can't attach anything?

[SeasideSusie Remembering in reply to tichangel]

How many results do you have? Can you not type them into a post? If there's only a few it's probably quicker and easier to type them in.

If you want to attach a picture you can only add one picture in the opening post of a thread. To add a picture to your first post in this thread you will need to go to EDIT then choose ADD A PICTURE.

How to edit a post on a PC:

Go to your first post and click on the downward arrow V next to

MORE (below your message).

This takes you to your original message, scroll down until you see ADD A PICTURE, click on that.

Upload your picture.

Click on SUBMIT.

Make sure you don't show any personal details like name, address, date of birth, etc.

Zoom in on the results and reference ranges so they are readable.

If you are on another device I can't help but this might:

support.healthunlocked.com/...

[tichangel in reply to SeasideSusie]

Thanks so much for that. There are a few blood tests, but I can't see Vit D, ferritin or B12 or TG thyroid antibodies on there as suggested in below replies.

These are the thyroid results:

free T4 - 28.2 pmol/L [10.5 - 24.5]

TSH level - 0.66 mU/L [0.27 - 4.2]

[SeasideSusie Remembering in reply to tichangel]

OK, so the reason your GP wants to reduce your dose is because your FT4 is a fair bit over range.

The fact that you still have symptoms suggests that you may not be converting T4 to T3. T4 is a pro-hormone and it has to be converted to T3 which is the active hormone that every cell in our bodies need. Low T3 causes symptoms. The trouble is doctors don't seem to know this and FT3 is not normally tested. Your results are very like my own before I sorted myself out - very low TSH (mine was suppressed) and quite a bit over range FT4.

There are a couple of reasons why T4 to T3 conversion can be poor. One is that nutrient levels aren't optimal, they need to be good for thyroid hormone to work properly, and this is why you'll see us always suggesting that people get them tested.

If nutrient levels are optimal and conversion is still poor then we just have poor conversion so we may need to look at adding T3 to Levo.

So the first step is to get full thyroid and vitamin testing as suggested. Most popular and relevant are:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Post results on the forum for comment when you have them and we can hopefully help you find the way forward.

[SlowDragon Administrator]

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Have you had vitamin and antibodies tested?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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

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

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

come back with new post once you get results and ranges

Members can advise on next steps. Low vitamin levels are often linked to poor conversion of Ft4 to FT3

Improving vitamins can raise TSH, lower FT4 and increase low FT3

[tichangel in reply to SlowDragon]

Thank you so much for your reply and advise. I will now be looking at the test through Medichecks so I can have these results ahead of my next GP appointment to get my bloods re-tested.

[SlowDragon Administrator in reply to tichangel]

Come back with new post once you get results and ranges. Members can advise on next steps.

[Hidden]

Join the club!

I KNEW I was still undermedicated with thyroxine, whatever the results, but had to take a slight reduction (average down by 12.5mcg a day instead of the usual 25). All it did was increase my hypo symptoms and give a couple of new ones, but the deterioration was so slow that it took several months to convince the doctors that I needed to go back to the previous dose or even an increase.

To be fair, my T3 and T4 did test near the top of the range but my TSH had gone down to 0.01, so I can understand the assumption that I was overmedicated. Except I KNEW I wasn't!

It seems very common for TSH levels not to reflect your actual thyroid status. TSH is produced by the pituitary when stimulated by the hypothalamus, which senses blood levels of hormones. But there are a number of things that can go wrong with the very complicated feedback system involved.