New here - advice please.: Hi there, new to the... - Thyroid UK

Thyroid UK

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New here - advice please.

Fairfax82
Fairfax82

Hi there, new to the forum and feel a bit overwhelmed! I was put on levothyroxine just over 2 years ago after suffering terrible exhaustion. I feel like I've just been doing what I was told be the GP and have recently started to question things. I've just had my yearly blood test and have levels of 2.62 and 17.3. I've seen people talking on here about so many different levels and blood tests that I've never been offered. I've never really had a conversation with my GP with this- just a phone call to tell me to take the medication. I am taking 75mcg per day and would like to know if its possible to reduce this at some point.

I guess I would really appreciate some advice as to what questions I should be asking my GP and whether I should get some private tests?

16 Replies

I've been o 75mg levothyroxine for over 20 years now; occasionally I try to reduce but inevitably have to return; maybe I'm very fortunate, but I have never had side effects at all. It will be interesting to see what others say.

SlowDragon
SlowDragonAdministrator

75mcg is only one step up from starter dose

You may be under medicated

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

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

Ask GP to test vitamin levels (and thyroid antibodies if not been tested yet)

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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Fairfax82
Fairfax82 in reply to SlowDragon

Thank you. It just feels like I have had no information from my GP everything you've replied with is incredibly helpful. Time for some private blood tests I think!

Buddy195
Buddy195 in reply to Fairfax82

I felt like you when I joined this forum. I’ve learned so much from other members and reading all the links suggested. Private testing has empowered me, as I’m not waiting/ hoping for GP to take action. Having my thyroid medication & key vitamins more optimal has helped so much. It’s also wonderful to know others here have had similar experiences!

SlowDragon
SlowDragonAdministrator in reply to Fairfax82

Yes, I was exactly like you ....only took me over 20 years on levothyroxine before finding this forum and turning my life around

GP's know very little about thyroid. They give us no information and when we question them they brush us off with excuses. So we have to learn about our condition from books and online and places like this forum and then we have to take our own actions. That can be private tests to take to the GP and ask for a bigger dose or a referral to an endocrinologist (not that they seem to understand thyroid much better than GPs in many cases). We need to understand the medication and the dosing and push for what we want and not be fobbed off.

If you are hypothyroid the medication is for life. So no, you are unlikely to be reducing it from 75. But if you don't like the idea of drugs, remember this isn't a drug. It's a hormone. We are replacing a missing or low hormone level. Just like a diabetic has to do with insulin and women do with HRT.

Thank you, that's a useful way to look at it.

Fairfax82
Fairfax82 in reply to SlowDragon

For info - I have found out if anyone has a Blue Light Card they offer 15% off Medicheck blood tests.

I am interested in this forum. My primary prescribed Synthroid last Sept when my TSH test showed 5.45. I had radiation in 2010 for a stage 2 tonsil cancer and was told by my oncologists radiologist that at some point my thyroid may have problems, either too low or too high. So, my situation is different. I managed ten years without any problems, getting checkups at my ENT and thyroid test every year. I feel my test was Sub clinical and she should have retested in 3 months. Instead she put me immediately on medication. I have never been given or shown my TSH test results since being on Synthroid. I have to just accept that they think they are good. I am not happy with any of my doctors except for my ENT.

SlowDragon
SlowDragonAdministrator

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

I wish I could help, I’m in my 6th year and desperate for help. I want to let you know I sympathise.

Fairfax82
Fairfax82 in reply to Chrissyc17

Thank you Chrissy. I'm so new to this i can't offer you any help but I hope you get some soon. I'm sure there are other members on here who will help you if you reach out to them.

You don't say if you have continuing symptoms..? Why would you want to come off the Levo? It's not something that fixes you - it just replaces something that's missing. I'd get tsh t4 and T3 tested privately via Medichecks or other just so you know where you are in the ranges.

Fairfax82
Fairfax82 in reply to JAmanda

I'm not experiencing symptoms and I feel that with it being such a low dose compared to what others seem to take i would like to understand more about the different levels and ranges and see if it is something I do need to be taking. Thanks for the advice, I am definitely getting some tests done privately.

I’m really sorry to hear that you are feeling like shit... honestly doctors at the moment unless it’s Covid they don’t want to know.. I am on 175mg of Levo and I was on 200mg but they reduced me and only going down 25mg made me feel terrible for ages and ages and now I am used to 175mg I feel absolutely fine.. it sounds like your dosage is wrong and you need to write down all these questions for your doctor and ask them all.. heck book a double appointment if you want and make sure you get all your points across.

I had Graves’ disease to begin with (before I had my thyroid removed) and my original doctor (who isn’t there anymore... funny that) first said that I had constipation.... yep constipation.. it took ages for them to do a simple blood test, when I demanded one and they gave in she called me back and said “yeah you have a over active thyroid” she then put me on 25mg.. in told I eventually went to hospital after having a thyroid storm and I was in there for 3 days. The doctors at the hospital told me that what the doctor had given me is something they give to old lady’s who had thyroid problems... not a 25 year old..

It's not just old ladies who need thyroid replacement hormone!

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