Hypothyroidism

[Animallover2002]

Hi everyone, can anyone point me in the right direction to how I go about speaking to a specialist. Every time I go to my doctors they always tell me my blood tests come back fine and that my medication is working and unfortunately it’s just something I will need to live with. I need some help anyone’s response will be greatly appreciated. Thank you.

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

What vitamin supplements are you currently taking

Approx how old are you?

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 and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

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 too

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Animallover2002 in reply to SlowDragon]

Thank you for your reply I really appreciate it. At this moment of time I do not have access to any records of my blood results or any other tests. I have got an appointment in the week to speak to my doctor I will do what you recommend and ask to have access to my results. I have been tested for Vitamin D deficiency this has always come back low so they told me to take tablets for this which I do. I started on 25mg and now I am on 50mg I have asked my doctor if I need a higher dosage however they say that my bloods show that I need to stay on this dosage. I just don’t believe that my tablets are working I’m constantly feeling tired and weak very sick and I get heart palpitations, which I visited the hospital for and they put it down to depression and anxiety and they put me on citalopram. Just feeling really fed up considering I am only 19years old.

[Localhero in reply to Animallover2002]

Hello and welcome to the forum.

“I started on 25mg and now I am on 50mg I have asked my doctor if I need a higher dosage however they say that my bloods show that I need to stay on this dosage.”

Is that 50mcg of Levothyroxine? If so you might like to be aware that 50mcg is normally a starting dose and that, when treated well, dosage is normally titrated up every few months until symptoms resolve. It’s entirely possible that you are under medicated.

Best thing, as SlowDragon and SeasideSusie suggest is get hold of your blood test results and come back with another post and we can all give you more ammunition on how best to go forward with your doctor.

[SlowDragon Administrator in reply to Animallover2002]

Don’t ask Dr for your results….ring receptionist today and request printed copies of your blood test results over last year or two

Or get registered for results on line (if that’s available)

How long have you been on just 50mcg levothyroxine

This is only a starter dose

Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Most people when adequately treated will have TSH around or under one

Most important results are always Ft3 followed by Ft4

And all four vitamins need to be optimal.

How much vitamin D are you currently taking

When was vitamin D last tested

Essential to test thyroid antibodies at least once

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day as likely dose eventually required

[Animallover2002 in reply to SlowDragon]

Spoke to the receptionist today about obtaining my blood test results from the last 2 years and I was told I need to email them for this to happen, which I will do. My doctor told me today that I can’t see a thyroid specialist as they won’t accept my referral even if she wrote down all my symptoms. She said all my symptoms are very unlikely to be linked with my thyroid as she says it’s under control with my medication. Now what do I do? What are my next steps?

[SlowDragon Administrator in reply to Animallover2002]

Email request for all your results

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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

How much do you weigh in kilo approx

How long have you been on just 50mcg levothyroxine

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking….if any

suggest you request GP test vitamin D, folate, ferritin and B12 at next thyroid blood test

Once you have new blood test results and copies of previous tests the forum members can help advise on next step after this

[jacobite33 in reply to Animallover2002]

Animallover2002 With my own personal opinion of this site and these fantastic people I can assure you that you have came to the right place for help.Honestly! I was in a very dark place with depression anxiety palpitations and quite a list of other symptoms.On the mend now slowly but surely all thanks to finding this site.Just Don’t do as I did and keep going to the doctors as you will probably get conditioned into thinking it’s you that’s at fault.All the help support and advice that is here will hopefully will change your docs mindset as you progress in healing

[SlowDragon Administrator in reply to Animallover2002]

Levothyroxine doesn’t top up failing thyroid, it replaces it…..which is why almost everyone on levothyroxine will need to eventually be on full replacement dose

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually 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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more …..and some less

healthunlocked.com/thyroidu...

[SeasideSusie Remembering]

Welcome to the forum Animallover2002

The first thing to do is obtain a copy of your test results. If you are in England your surgery may offer online access to results, if so then register for this. If not then ask the receptionist (not the doctor) for a print out of your results. Once you have them post the results, with reference ranges (as these vary from lab to lab) so that members can make suggestions.

By saying your results are fine they just mean that they are somewhere within the range, but it's where in range that is important, we need optimal results to feel well.

For a full picture we need to see

TSH

FT4

FT3

Thyroid antibodies

and because thyroid hormone needs optimal nutrient levels to work properly we also need to test

Vit D

B12

Folate

Ferritin

Also please tell us what dose of thyroid meds you are taking and whether you take any supplements, if so what and the dose.

[SlowDragon Administrator]

So first step is to get full thyroid and vitamin testing

Come back with new post once you get full results

Improving low vitamin levels can significantly improve symptoms

Addressing food intolerances is also important

[Karelski]

Go private. Find the best in this field not just your local consultant and pay to get their expert advice. £200-250 is about the London SE fee here. It's worth it. I did it after being told nothing wrong, there is, it's life threatening! GPs are only forwarding very sick patients as the NHS is in big trouble, so the less sick eventually wait and wait then become the very sick, then get referred. Have a lean Christmas but spend on your health.

[Noodibranks-7]

HiAnyone can see their test results by logging into the NHS app, be careful not to confuse with the Covid app! It may take some days or weeks before your file has uploaded to view.

[JAmanda in reply to Noodibranks-7]

Not every surgery offers this but definitely worth a look. Think you’ll find there’s T3 missing so I’d just go and get a set of thyroid tests privately. Try Medichecks or Monitor my health or other and get tsh t4 and T3 and if you can afford it get vits too then post here for good advice.

[Noodibranks-7 in reply to JAmanda]

I’m pretty sure it is a national thing that relates to your NHS number, not specifically your surgery therefore all should be able to download the app just like any other app and register and your file will be there

[Annoynomice]

I don't think anyone has stressed that it's your legal right to get your results and receptionists are really used to people asking for them. They should just print them off for you.

If you don't have the app, whether your surgery does put test results in it, it is worth getting anyway as you can order your repeat prescriptions in it. It also has your vaccine status in it (if you use nhs app). But you may have to ask for what you want to see.

I would definately put your results in the forum. I would also echo that because you are being treated, your optimal dose will be nearer 1.

Also, I have low vitamin D and I take K2 and magnesium as well.

Good luck