New here with no clue !

[Hoops501]

Hi, and apologies right up front here. I was diagnosed with very mild hypothyroidism about 2.5 years ago and was put on 25mcg of levothyroxine. Slowly over the following 6-12 months that was increased to 200mcg, which I'm still taking. Nothing has ever been explained to me about what this means to me, long term healthwise or what the symptoms/side effects are. I have severely dry skin on my face, but actually put that down to having severe acne rosacia (I do have that, but no idea whether it is now the main cause). I don't know what my blood tests have ever said, I have just gone along when told too and been told they are either low or high. I know this makes me sound incredibly naive & now perhaps I realise that is exactly what I have been. I've always assumed that it was no big deal. ? Please tell me what I need to know and if there is any alternative to the medication I'm on now that would relieve my itchy dry skin.

[SlowDragon Administrator]

Welcome to the forum

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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

Most primary hypothyroidism is caused by autoimmune thyroid disease

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

You should have had thyroid antibodies tested at, or soon after being diagnosed as hypothyroid

Ask GP to test vitamin levels if not been tested recently

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

Come back with new post once you get your results and members can advise on next steps to see if you can improve symptoms

[Hoops501 in reply to SlowDragon]

Thanks for the response. I'm going to contact my doctors tomorrow and get the results of my recent blood tests as a starting point, however I don't think that I had them first thing in the morning leaving 24hrs since taking levo (mainly because I didn't know that was optimal) but I have to start somewhere.

[SlowDragon Administrator in reply to Hoops501]

Just talk to receptionist to get results

[Lora7again in reply to Hoops501]

You are entitled to get your results because it is the law ...

[Hoops501 in reply to Lora7again]

Hi both, so I got my results from the doctors and have no idea what they really mean. Firstly they could apparently only find 2 results even though I have had many blood tests over the years and also had no idea when to medicate prior to being tested.

So 2018 says serum TSH Level 22.9 m(iU)/L high. 0.20 - 5.50miu/L

2019 says serum TSH LEV (MoragB) - normal no action required. 4.6 miu/L 0.20-5.50miu/ L

[Hoops501 in reply to Hoops501]

Ok actually apologies, what I'm getting from that is that they have only tested TSH. Nothing else. I will ask if they will test all other hormones

[SeasideSusie Remembering]

Hoops501

Welcome to the forum, and I think it's fair to say that we were all like you at one time. We all trusted our doctors, that we didn't need to know anything other than our doctors would do what's best for us. How wrong we were!

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First of all, it's always advised to get a print out of your test results every time you have any tests, including thyroid tests. In England GP surgeries are supposed to have online access to test results so if you live in England you can ask if your surgery has that and register for it (I'm in Wales and we don't have online access). Make a spreadsheet and put the date, test name, result, reference range, what dose of Levo you are on, how you feel, if GP suggests change of dose. Do this every time, it will become a very valuable resource. If GP wants to change your dose at any time you can always say something like "But when I was on that dose before, some symptoms came back, I felt much better on xxx dose".

Pop along to the surgery and ask the receptionist for copies of your previous tests, make sure they're printed as the print out will include the reference ranges. Don't accept verbal or hand written results as mistakes can be made. In the UK we are legally entitled to our results under the Data Protection Act and the European Data Protection Regulations. Don't let them tell you that you can't have them. They can't charge for them.

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Next, most doctors only take notice of the TSH result. This is wrong because TSH is not a thyroid hormone, it is a signal from the pituitary for the thyroid to make hormone if it detects there's not enough (Thyroid Stimulating Hormone). The important tests are FT4 and FT3, with FT3 being the most important and hardly ever done. These are the thyroid hormones which tell us what level of hormone we have circulating in our bodies at the time of the test.

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If not already tested then thyroid antibodies will tell you whether you have autoimmune thyroid disease aka Hashimoto's. Antibody tests for this are Thyroid Peroxidase (TPO) and Thyroglobulin (Tg)

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The aim of a hypo patient generally, when on Levo only, 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. Being optimally medicated should alleviate symptoms.

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If you still have symptoms on 200mcg Levo then there may be something else amiss, such as low nutrient levels.

Thyroid hormone replacement can't work properly unless we have optimal nutrient levels so it's also important to test and achieve the following levels:

Vit D - recommended is 100-150nmol/L

B12 - recommended is top of range for Total B12 and for Active B12 it's over 70 as a minimum

Folate - recommended is at least half way through range

Ferritin - recommended is half way through range

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When doing thyroid tests, we 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, coffee affects TSH so it's possible that other caffeine containing drinks may also 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 in the assay).

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

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Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

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It might be a good idea for you to have a look through ThyroidUK's main website (this is their forum), work your way down the purple menu on the left hand side. Come back with any questions or anything you want clarifying:

thyroiduk.org/tuk/about_the...