Advanced Thyroid Results...

[TrainWreck59]

Hi all,

I haven't posted for a while, due to one thing and another, but I now have my blood results, and whilst I'm assuming that they all point towards Hashimoto's (which I heavily suspected anyway), it would be good just to have opinions and thoughts going forward, drawing from all your experience.

I have a NHS endocrinologist appointment next week (I was amazed it came through so quickly!), but I'm not overly confident, since having researched him (and the other local NHS endos in my area), they all specialise in diabetes, NOT thyroid! Still, I'm glad I've got the blood results to show the endo, regardless. Here are my results:

Inflammation

CRP HS - 1.53 mg/L (range less than 3)

Iron Status

Ferritin - 51 ug/L (range 30-264)

Vitamins

Folate Serum - 20.5 (range more than 7)

Vitamin B12 - Active - 90.5 pmol/L (range more than 37.5)

Vitamin D - 49 nmol/L (range 50-200)

Thyroid Hormones

TSH - 2.97 mIU/L (range 0.27-4.2)

Free T3 - 5.3 pmol/L (range 3.1-6.8)

Free Thyroxine 9.8 pmol/L (range 12-22)

Autoimmunity

Thyroglobulin Antibodies - 102 kIU/L (range 0-115)

Thyroid Peroxidase Antibodies - 306 kIU/L (range 0-34)

So, is there any advice, anything I should be specifically pointing out to the endo next week, anything I should/shouldn't be doing? In your opinions, does it point to Hashimoto's? And if so, what is the treatment, is it Levothyroxine? Do I need to push for this at my appointment, because my GP dismissed it when I mentioned that, telling me my TSH result did not warrant it. Or is it a case of just struggling along with symptoms? Will it do me harm if I do not take any medication at this point in time, do my results even warrant any medication?

Any help/advice/recommendations would be greatly received and appreciated.

Thanks all

[SlowDragon Administrator]

Ft4 is below range

High thyroid antibodies

You need coeliac blood test

what vitamin supplements are you taking

Vitamin D too low

Ferritin could be higher

[TrainWreck59 in reply to SlowDragon]

Hi, thank you. I haven't been taking any vitamins, but will rectify vitamin D now. I will look into getting coeliac blood test organised. Do I need to take iron tablets?

[SlowDragon Administrator in reply to TrainWreck59]

U.K. Government recommends everyone take vitamin D daily as minimum Oct to April

Thyroid patients usually need to take continuously

Low vitamin D

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[helvella in reply to SlowDragon]

However, U.K. Government totally neglects to give any guidance or information whatsoever about those who cannot tolerate vitamin D in any form.

[SlowDragon Administrator in reply to TrainWreck59]

At moment suggest you just look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-4 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

MMH test

monitormyhealth.org.uk/anae...

[TrainWreck59 in reply to SlowDragon]

Hi SlowDragon,

I don't eat meat, but do eat pumpkin seeds. I will take a look at those links, thank you.

[SlowDragon Administrator in reply to TrainWreck59]

So you probably want to do a full iron panel test for anaemia

Very difficult to maintain iron on vegetarian diet with Hashimoto’s

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

[TrainWreck59 in reply to SlowDragon]

I'm vegan, so no dairy/egg etc. GP did iron deficient test a few months back, I think, but it came back normal. Do you think I need to get another done?

[SlowDragon Administrator in reply to TrainWreck59]

How long have you been vegan

Exactly what vitamin supplements do you take

You will need to tell endocrinologist you are vegan

And will probably need iodine test

Genova Diagnostics for iodine test

thyroiduk.org/help-and-supp...

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Cost: £76

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

[TrainWreck59 in reply to SlowDragon]

Thanks SlowDragon. 37 years vegan.

Only began taking supplements today, after my whole life not taking any! Endo wants to take some bloods before the appt., as I found out this morning, so I'll wait and see what bloods he takes first, I think, otherwise I may duplicate some. Will pause vitamins again until after next week (vitamin D, selenium, b complex).

[SlowDragon Administrator in reply to TrainWreck59]

You will need to tell endocrinologist how long you have been vegan and that you have not been taking any supplements at all

It’s possible your iodine levels are extremely low

HOWEVER do NOT start any iodine supplements as adding iodine could make your symptoms significantly worse

Levothyroxine contains iodine……may need to start on levothyroxine extremely slowly

pmc.ncbi.nlm.nih.gov/articl....

[SlowDragon Administrator in reply to TrainWreck59]

GP did iron deficient test a few months back, I think, but it came back normal.

Normal just means within range

Please add actual results and ranges

Iron

TIBC

Transferrin saturation

Ferritin

Thyroid test results

High Thyroid antibodies confirms autoimmune thyroid disease

Only slightly raised TSH, but below range Ft4

See yellow box for secondary hypothyroidism on this flow chart

Some degree of central hypothyroidism can happen with Hashimoto’s, as thyroid levels hop up and down so much TSH can give up trying to keep up

But being vegan could also be an issue

gps.northcentrallondon.icb....

[andyjs2 in reply to SlowDragon]

Hi, you apparently have Hashimoto’s so it would be wise to try and resolve that along with starting T4. Fixing hashi’s is not easy, and may not be possible, but getting your TPO antibodies back in range can actually help improve your thyroid function I have found while helping a friend address her hashi’s.

[pennyannie]

Hello TrainWreck :

Ok - here's a start - in a nutshell -

Everywhere I researched suggested ferritin needed to be over 70 before any form of thyroid hormone replacement worked well, and was able to be fully utilised and converted in the body into the active T3 thyroid hormone.

I now aim to maintain my core strength vitamins and minerals at ferritin around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.

With a T4 under the range and with over range antibodies indicative of Hashimoto's one would hope you will be started immediately on T4 - Levothyroxine - thyroid hormone replacement.

Hashimoto's is an Auto Immune disease that over time systematically attacks and destroys the thyroids capacity to produce enough thyroid hormones on a daily basis to allow you to function well and the insidious symptoms of hypothyroidism start encroaching on your physical, mental, psychological, emotional and spiritual well being, with your metabolism slowed, possible stomach and weight issues and a lower than ' normal ' temperature for you.

However it is not a straight line and with Hashimoto's you are liable to erratic own thyroid hormone production when these AI attacks occur and can experience ' swings ' in symptoms and blood test results ' appearing ' as over active - but inevitably the swing always swings back and when it does you thyroid will likely be further compromised and your dose of thyroid hormone replacement likely need increasing.

Do you currently have any issues with your eyes, sore, gritty, light sensitive, streaming - to ease any discomfort please ensure all drops, lotions, potions are Preservative Free - even those prescribed.

You might like read around and many forum members find the research and suggestions of Dr Izabella Wentz who writes as thyroidpharmacist.com of value:

Also you can find all things ' thyroid ' and so much more on the Thyroid UK website

thyroiduk.org

[TrainWreck59 in reply to pennyannie]

Hi pennyannie, thank you, that's interesting reading - particularly given the extremities being so cold, no matter how warm the environment. In fact, most things you mentioned correlate with my own experience thus far, except perhaps the eyes. Whilst I am sensitive to light, and my eyes do get sore/gritty from time to time, I can't say (thankfully at the moment, at any rate) that they cause me too much bother on a daily basis. I'm sure I have that one to look forward to! What is the relevance of preservative free please, for eye drops etc?

I am very symptomatic in many other areas though, and feel desperately ill, as I'm sure so many others have done here.

May I please ask, is it the endo's job to now look at me holistically, and prescribe me Levo, or would that be the GP - because when I enquired, the GP categorically told me that with a TSH below 10, there's no way I'd be prescribed it??! 🙁

I've been dipping in and out of Isabella Wentz's research, which I'll continue.

Thank you for your input.

[pennyannie in reply to TrainWreck59]

Your doctor is paid to follow the guidelines and currently a TSH over 10 on 2 separate blood tests months apart - wins you a raffle ticket and a prescription for T4 - Levothyroxine - thyroid hormone replacement.

The guidelines also suggest that if antibodies are positive and over range treatment can start once the TSH tips over 5 ( I think ) :

Why 5 or 10 - when we know hypothyroidism starts kicking in when the TSH tips over 2 and treatment used to be automatically started by doctors when the TSH tipped over 3 -

Probably because hypothyroidism is considered a long term chronic illness and qualifies - in the NHS rules currently - for Free Prescriptions on all your NHS medications.

So - moving on - you will likely be managed in primary care once settled on a dose of T4 that tends to alleviate symptoms being tolerated and treatment will then passed to your primary care surgery. -

Treatment in the NHS is a numbers game - it is certainly not holistic :

if in ' the NHS range ' for thyroid and vitamins and minerals -

it is presumed ' you are good to go ' as the NHS only look to treat when outside these ranges -

and if you continue to complain about symptoms ' it must be something else ' and likely get suggested that an anti depressant ' might be worth trying ' as some form of consolation prize.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -

with T3 being the ' active ' hormone and said to be around 4 times more powerful than T4.

Your primary care doctor can only prescribe T4 which is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs the body -

At the turn of the century your doctor had all 3 main treatment options in his box of tricks to help you deal with the consequences of having this AI disease which will slowly render your thyroid disabled and was able to freely treet you with T3, T4 or Natural Desiccated Thyroid which is the original successfully used treatment for hypothyroidism for over 100 years - but now the most expensive treatment option and so black listed on the NHS.

T3 - Liothyronine needs now to be instigated by an endocrinologist and in some areas of the country it has become something of a post code lottery with ICB / CCG area management restricting prescriptions and some endos working to hospital financial constraint rather than to a patients medical need.

[TrainWreck59 in reply to pennyannie]

Thanks again pennyannie, all good, sound, much-needed knowledge and info for a newbie 🙂

[pennyannie in reply to TrainWreck59]

Keep us in the ' loop ' - some find very knowledgeable doctors and specialists -

Be positive and go to the appointment just knowing a little bit more and believing in the system - you may not be disappointed - it's another lottery !!

[TrainWreck59 in reply to pennyannie]

Well, I've just had word from my endo's secretary who wants me to come in and repeat the bloods prior to my appointment next week, even though I've just received my results back from Medichecks yesterday . I sent across my Medichecks results to the secretary, but the endo still wants me to go in again and have more bloods

[pennyannie in reply to TrainWreck59]

The NHS are not obliged to accept private blood test results - no worries -

you're not making anything up - it is what it is - which in some ways is ridiculous !!

So presume you are having the bloods taken a couple of days before the appointment so the endo has NHS results to refer to ?

[TrainWreck59 in reply to pennyannie]

Yes, correct, a few days prior.

The thing is, the secretary asked me to send the results through of the private tests, so I did. And then he decided he wanted to conduct his own!!

[pennyannie in reply to TrainWreck59]

Probably seen the need to get you in the NHS computer system -

don't worry - stop over thinking - it's just a formality -

as the computer will spit out what needs to happen next :

Critical thinking may come out to play later when you talk with the endo.

[Beads]

You’ve been given advise on what you need, what you need to keep saying during the appointment with the Endo is “why is my T4 significantly below range, shouldn’t it be in range?”

With your TSH being in range, though higher than optimal, you’re likely going to have to battle for treatment. But keep turning it back to the below range T4, this is the actual number they should be looking at.

Other guns to bring out, “if my TSH is ‘normal’ but my T4 is under range, should we be looking at the rest of my pituitary hormones to see if that’s working properly?”

Good luck and don’t forget to let us know how you get on.

[TrainWreck59 in reply to Beads]

Oh gosh, it's so depressing isn't it, but I am aware that I have a fight on my hands. Very useful things to say to the endo, thank you. However, I've a feeling I'll end up seeking a private endo, as I want one that understands the workings of the thyroid, not just diabetes. I wanted to give the NHS endo the benefit of the doubt though, just in case, so will definitely report back after my appointment. Thanks for the tips 😁

[humanbean]

To decide a dose for your vitamin D, you should find this link helpful :

grassrootshealth.net/projec...

Please be careful with the units of measurement.

USA uses ng/mL and most of the rest of the world uses nmol/L.

To convert levels of vitamin D results from one set of units to the other :

grassrootshealth.net/?post_...