Getting a diagnosis

Hi. Am seeking guidance. Doctor recognises I probably do have a thyroid problem and am on Levothyroxine but am having headaches. My levels do seem to fluctuate and I don’t think he understands how Hashimoto’s can sometimes look like Hyper (is that subclinical?) I think that is what I have but can’t seem to get it properly tested. Mother died a bit before her time wheelchair bound after over a decade of misery (also on Levothyroxine). Would like to have a better passing than she did! How do I get autoimmune disease properly investigated on NHS or must I go private and plonk reports on Doctor’s desk?

[SlowDragon Administrator]

Welcome to the forum

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

How much levothyroxine are you currently taking?

How long on this dose

Do you always get same brand of levothyroxine

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 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 vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

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...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[Hidden in reply to SlowDragon]

Hi. Yes, had just read your similar reply to someone else. Very helpful thanks. Am noting it all down.

[SlowDragon Administrator in reply to Hidden]

Far too often GP will leave patients on tiny dose levothyroxine and only test TSH

Levothyroxine doesn’t “top up” failing thyroid it replaces it ....so important to be taking high enough dose

There’s an over reliance on just TSH by medics

Come back with new post once you get results

[Hidden in reply to SlowDragon]

That’s precisely what he’s done! Will pursue...

[SlowDragon Administrator in reply to Hidden]

guidelines on dose levothyroxine by weight....can help persuade GP to increase .....especially alongside poor test results

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 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.

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...

[Runner25]

Hi There, sorry to read you’re still feeling rubbish and not getting very far with your GP. As @SlowDragon has said you do need a full thyroid evaluation to try to get to the bottom of things and it seems each practice does these to varying degrees. I have been on this forum for a few months and have gained more information and support than I have from my GP! I too suffer with debilitating headaches since having an under active thyroid. I’m keeping a diary now to see if I can link them to anything. I’m not sure if it’s the Levo causing them (75 is my dose) or the fact that I am hypo? I think my headaches are maybe linked to running, something that I have done for 25 years without any headaches, but now seems to leave me extremely fatigued and then the headaches start, but not always! Some weeks I’m ok and then out if the blue they start up again. My last telephone appt with my GP resulted in him saying “he could give me a little tablet that would improve my mood and sleep”! When I said that I was not depressed and felt that I needed to be referred to a specialist he very reluctantly agreed, but not before saying that it was probably pointless and then he promptly hung up on me! If it wasn’t for my family insisting that I follow this through as they could see how often I was ill with headaches and fatigue I would probably just give up and accept that this is my lot! That is how my GP made me feel! My advice to you is don’t give up, don’t accept feeling rubbish most of the time, it’s not normal and you deserve to feel well. If you can go private do, if you can’t then continue with your GP and don’t be fobbed off. What I feel is also very important is to be as healthy as possible in every other way follow a good diet high in vitamins and minerals and exercise too if you can. Good luck and keep going until you get some answers x

[Hidden in reply to Runner25]

Cheers. All you write makes sense to me. Yes, am doing all the healthy “gut bio friendly” eating and regular exercise. That’s walking not running as osteoporosis has started! I shall use all the tips I gain here to wear my GP down 😂 Today I went to have the chest X-ray he referred me for to rule out lung cancer! (I used to be a social smoker teens-40s.) oh well, if it keeps him happy. Am about to report back to him electronically that the covid thermometer on the entrance turned me away 4 times “temperature too low. Step out of the box and try again.” Another hypo symptom he can record!

[DippyDame in reply to Hidden]

Try ticking all you symptoms on this list then show it to your GP!

Sounds as if he needs to read it!

thyroiduk.org/signs-symptom...

I expect he treats by TSH.....wrong, but that is how medics are now taught

They often don't test FT4 and FT3 ( the significant duo) which is why so many patients are suffering. If they don't look for problems they won't find them!

This paper points to the correct way forward....authors are eminent in the thyroid field

bmcendocrdisord.biomedcentr...

Keep pushing for appropriate treatment

Frankly you shouldn't need to go private ( often NHS medics anyway) but you probably would be seen quicker!

I'm not a medic just another member who has had a long thyroid journey...and found the answers (with support from here) that escaped me for decades.

Good luck

DD

[Sigournay]

Hi my daughter (24) has suffered from her Thyroid since the age of 17 and also had terrible headaches. The Dr put her on beta blockers (proprananol) and they helped.

[Bumley]

Hi, Back in 2009 I was taking part in a Trial after my Bypass operation and the doctor running it asked me if I would like any extra blood tests done and she suggested Thyroid and vitamin D. I visited my GP and he flat refused to do anything, you can imagine I was quite angry. I went on to Thyroid UK web site put my case forward and they suggested a private blood test and that confirmed that had antibodies of 1000 and my TSH was 8. I made an appointment with the GP shoved the report under his nose, I got my way but he insisted I had to have a NHS test! That done I was put 50 mg and eventually up to 785mg.

The pattern shown above by Slow Dragon is very familiar to me. I went Sandwell and west Birmingham NHS Trust to have a Vitamin D test and was found to be severely deficient and again I shoved it up the GPs nose, got my treatment and then left the practice!

[Hidden in reply to Bumley]

Yes, am getting the impression it is a tough battle to be taken seriously by NHS doctors. I do understand that their resources are tight and I know we have to share their time and those resources. On the other hand, I don’t want to die early if I don’t have to and miss my grandchildren growing up. It’s tough knowing how far to push. I am trying to do most of the work myself, self diagnose and just get a bit of confirmation I’m on the right track. Like you, I shall pay for a couple of private tests that I hope will be enough to convince my NHS doctor then ask him to give me the medication and monitor.

[Bumley]

You have to look after yourself. Doctors work to rules and are reluctant to come outside their box!