Thyroid pots

[Kq86]

I'm diagnosed with hashimoto's and underactive thyroid also chrons migraine fibromyalgia pots syndrome and was told stop my thyroid medication and my gp believe hashimoto's doesn't need meds I,cause of pots thyroid meds drive my heart crazy, afraid not to be medicated for thyroid any advice help please chronic nerve pain in ears and tingling in face wen hair touches it etc

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine were you on

Do you have results from on this dose

How long have you been without levothyroxine

Obviously you need to get FULL Thyroid and vitamin testing done

Very likely need a different doctor too if doctor doesn’t believe Hashimoto’s needs levothyroxine (good grief!)

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

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

[Kq86 in reply to SlowDragon]

Thank you got full pannel done with let's get checked and thyroid said normal but low and antibodies high , being on eltroxin and armour drove my heart crazy as I have pots syndrome only diagnosed they think thyroid meds done it , so they want me to stop for four weeks n test again they where normal my bloods last week but my hashimoto's they dont test n my gp believe no treatment needed, take vit b vit c b12injections and gave up gluten dairy etc and I'm a mess I have non specific white spots on my brain and they think there from migraine witch I get each day but not convinced, seen diff docs been told all diff stuff and I'm only getting sicker i have two small babies I can hardly mind my heart is broke and I'm at a loss as what to do or who can help me it's one illness after another thank you for reply

[SlowDragon Administrator in reply to Kq86]

Your GP will make you extremely unwell by stopping levothyroxine

With Hashimoto’s we frequently need high dose to reduce TSH very low

Most important results is ALWAYS Ft3, followed by Ft4....TSH is frequently very low when Ft3 and Ft4 are at good levels

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists ....your GP is floundering

[e-mail]

Vitamin D needs to be at least around 80nmol and around 100nmol maybe better

Frequently need magnesium supplements too

Good quality daily vitamin B complex

Please list EXACTLY what supplements you are taking and results and ranges of

Vitamin D

Folate

Ferritin

B12

[Marz]

As you have Crohns it is more than likely you will have VERY LOW B12 - Folate - Ferritin - VitD. This is because you will be unable to absorb the nutrients from your food.

Low vitamins will cause many of your symptoms and there is a link between low VitD and Crohns.

You need thyroid treatment to support your thyroid whilst under attack from the antibodies. Both Hhashimotos and Crohns are auto-immune.

I too have Crohns and Hashimotos - Crohns since 1973 and Hashimotos since 2005.

Check for anaemia too.

[Kq86 in reply to Marz]

Because I have pots syndrome my gp wants me off thyroid medication for 4 weeks then check it again everytime I took thyroid meds my heart went crazy and they think its causes pots , I'm going to go see a specialist who deals with all this but hard going from doctor to doctor I'm exhausted from it , I am low in vit d and take loads vits also b12 injection and supplements and iron supplements thank you for reply

[Marz in reply to Kq86]

Your POTS is more than likely connected to your Thyroid. First you need the results of the tests that were done. Stopping your thyroid treatment is not the solution. Nothing in the body works well when thyroid hormones are low. Your heart probably went crazy due to anaemia - low iron.

Always obtain your test results si you can monitor your own progress and check what has been missed !

1. VitD - how much are you taking ? You also need to take the co-factors- magnesium and VitK2-MK7

2. How often do you have a B12 injection ? Do you have PA ? Are you also taking a GOOD B Complex to keep all B vitamins in balance.

3. Iron - how much are you taking and have you been re-tested ? Taking VitC aids absorption.

4. Other supplements ? Multi- vitamins not a good idea.

I have been on thus Forum since 2011 and know from reading that very few consultants know more than the members posting here.

Are you gluten free ? Dairy free ?

[Kq86 in reply to Marz]

Take vit d 6000 a day get b12injections once a week sometimes twice , I'm gluten dairy free , magnesium, b,12 folic acid cit c iron all of them daily , last thyroid tests where normal , I'm getting checked again in four weeks to see again

[Marz in reply to Kq86]

Normal is an opinion and not a result 😷 You need to have copies of test results and post them here. GP means your results are in range - but that does not mean optimal. Also what was tested ? TSH - FT4 - FT3 ?

You need to take VitK2-MK7 too to ensure your calcium goes to your bones and teeth.

[Kq86 in reply to Marz]

I take k2 also and my endo showed me results they where all in normal range obviously didn't check my antibodies nightmare all this I'm at a loss

[Marz in reply to Kq86]

You are doing well - so keep going ! As mentioned above being in the normal range has little or no meaning - it is where you are in the range. Also you need to know the tests carried out. Usually only the TSH is tested - a pituitary hormone - this tells the thyroid to produce T4 which is inactive. T4 needs to convert into ACTIVE T3 - needed in every cell of your body ! T3 very rarely tested in the NHS and yet it is the most important test. Hence the importance of knowing which tests and the results. Members here will help you interpret the results - results that are legally yours.

thyroiduk.org

[Kq86 in reply to Marz]

Have all my results except last ones I'll ask for my tsh is 3.5 my ft4 is 12.8 my t3 is 3.6 my tpex antibodies was 196iuml my t4 was 72nmol my tab antibodies was 459iuml if that's any meaning

[Kq86 in reply to Kq86]

My pituitary gland was high so had MRI check for tumour was none but my gp thinks meds I was on raised it up it's normal now n gp told me not to take dontinex anymore for it

[Marz in reply to Kq86]

Dontinex ? Sorry not familiar with this drug.

[Kq86 in reply to Marz]

To get prolactin down

[Marz in reply to Kq86]

Were those tests done before treatment started ? Even without the ranges ( figures in brackets after results ) your FT4 is low in the range - as is the FT3. Both needed to be higher. Anti-bodies confirm Hashimotos. TSH in a healthy person is around 2.5 and around 1 once on treatment.

POTS is a syndrome - meaning it has a collection of causes. Have your adrenals been tested ? 24 hour Saliva Testing done privately is the best test.

[Kq86 in reply to Marz]

Doctor doesn't do them just blood test in Ireland everything is shit trying see specialist who does it but cant get appointment that was before treatment yes ,I dont no where to get test , I no my adderall shot I do the adderall cocktail each day

[Marz in reply to Kq86]

I gave you a link above to Thyroid UK. Private Testing companies listed there - I think it is Genova Diagnostics that does Saliva Testing sent to your home ...

[Kq86 in reply to Marz]

Will it send it to Ireland thanks so much for all your help means a lot

[Marz in reply to Kq86]

You can ask them by email. I live in UK so don't know about Ireland 🌻

[SlowDragon Administrator in reply to Kq86]

Regenerus may send to Ireland

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

[SlowDragon Administrator in reply to Kq86]

tsh is 3.5

my ft4 is 12.8

my t3 is 3.6

my tpex antibodies was 196iuml

my t4 was 72nmol

my tab antibodies was 459iuml

Please add ranges on these - the figures in brackets after each result

Clearly antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Ft4 and Ft3 look extremely low ....need ranges to be certain

Aiming to increase levothyroxine slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until Ft4 and Ft3 are at least 50-60% through range

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 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...

[SlowDragon Administrator in reply to Kq86]

Normal results, doesn’t mean optimal

Ft4 and Ft3 at least 50-70% through range