High ferratin : I've tested high in feratin, is... - Thyroid UK

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High ferratin

123trisha profile image
36 Replies

I've tested high in feratin, is this associated with underactive thyroid...seems like everything is happening lately...low potassium..high cholestrol.. high blood pressure (controlled now with meds). Trying all i'm advised..Mediterranean diet and exercise ( swimming ) ..aching joints particularly knees , base of spine and along shoulders and wrists... any help would be gladly received..thanks. 😊

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123trisha profile image
123trisha
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36 Replies
greygoose profile image
greygoose

High ferritin can be due to high levels of inflammation. Did you have any inflammation markers tested at the same time, such as CRP?

Inflammation can be due to being undermedicated for hypo. High blood pressure can also be a hypo symptom. And, if your cholesterol is high, that is usually because of low T3. So, when did you last have a full thyroid panel tested? It sounds like you're under-medicated and/or a poor converter of T4 to T3.

If your FT3 is low, a Mediterranean diet and exercises are unlikely to help very much, I'm afraid.

123trisha profile image
123trisha in reply to greygoose

Thanks for your speedy reply..im unsure of crp test.. wish my dr would understand me and give me the answers you have...

greygoose profile image
greygoose in reply to 123trisha

I don't suppose for one instant that he knows the ansers. Very, very few of them do.

If you could get a private test done with Blue Horison, or someone like that, you could get all the necessary tests done including CRP, antibodies, FT3, etc. to give you a full picture of what is going on with you.

123trisha profile image
123trisha in reply to greygoose

Thanks for that..much appreciated. 😊

greygoose profile image
greygoose in reply to 123trisha

You're welcome. :)

C_S- profile image
C_S- in reply to greygoose

And I was a poor converter too so now take a separate T3 which lowered the BP a lot.

lovelab profile image
lovelab in reply to C_S-

this is very interesting ... mine is really high at the moment. The dr is trying to find the cause and looking at sleep apnea again. Ill mention this as I have bottom of range T3 and high T4.

C_S- profile image
C_S- in reply to lovelab

I have to get my T3 from Turkey as too expensive here now so GPs don’t prescribe. My hospital consultant advised it but the GP said not affordable. My private consultant in London has the same thyroid issues - also working as a GP - so he understands and he also gets his T3 from Turkey. Trade name of Tiromel. Consultant name is Dr Bernard Willis. Expensive but goodness has he resolved most of my issues. Also helpful were FB self help groups and general research. Good luck.

lovelab profile image
lovelab in reply to C_S-

I'm hoping to convince my new doctor to prescribe T3. Had my first visit this morning and he seems very receptive but I won't ask him yet ... it's a diplomatic process. In France where I am it is possible to get Cynomel with prescription and apparently is cheap.

bookleaves profile image
bookleaves in reply to lovelab

In re: sleep apnea, it's very key to ensure nose breathing during the night. This can be done easily and cheaply with micropore tape or elastoplast cut to size. Tape a narrow (1 inch or so) piece of tape vertically from nose to chin (if elastoplast, with the soft dressing part over your mouth). See James Nestor's book 'Breath' and look up sleep apnea in the index.

lovelab profile image
lovelab in reply to bookleaves

thank you for this advice.

SlowDragon profile image
SlowDragonAdministrator

How high is ferritin

Please add actual results and ranges

Are you pre or post menopause

After menopause ferritin often increases

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed usually by high thyroid antibodies

Hashimoto’s causes inflammation and this causes high ferritin

GP should do full iron panel test to see if iron is high as well

How much levothyroxine are you currently taking

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 at least once year minimum

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

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am 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 and money off codes

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

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.

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...

123trisha profile image
123trisha in reply to SlowDragon

Thanks for the very informative reply.. answers I can give you or are sure of are yes im post menopause, 10/ 11 years. My iron levels were normal but feratin levels high..not too much info on that except through a phone call to get repeat blood test for feratin...last couple months have been on statins, finally crumbled after trying for 3 years to try and lower high cholestrol myself through diet changes.. right decision I dnt know after hearing horror stories of statins. I'm now taking 125 of levothyroxine( dosage from beginning 20 years ago).I've heard of hashimotos but my condition never referred as that, always hypothyroidism ( underactive thyroid). My other meds are losartam potassium for blood pressure and sertraline. Thanks for all this info..im going to research it all..

Neon65 profile image
Neon65 in reply to SlowDragon

Hi Sliw Dragon can I put photo of results on here for you to see as can't understand a lot of my results. I do know my ferritin is high though. 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Neon65

Please write a new post of your own and add photo to that post

Hide any personal details in photos

Buzcat profile image
Buzcat

After my brand of Levothyroxine was changed to Teva my ferritin level went very high so did my cholesterol etc I became very ill I don’t know if it was due to the mannitol in it that was stopping absorption or there was not enough active ingredient in it it was if I wasn’t getting anything.

123trisha profile image
123trisha in reply to Buzcat

Thanks for reply..seems everything i do makes no difference...but i'll keep at it until I find the answers.. 😊

eckist profile image
eckist

Hi there, do you know what your ferritin level is? High ferritin can be associated with Haemochromatosis which is an overload of iron as I found out, it can cause issues with thyroid and arthritis. I have had underactive thyroid for 20 years and only discovered I had genetic haemochromatosis last year as it was noted on my blood test results. However the GP did nothing. I asked a different GP for a transferrin saturation test which is another marker. and that was very high. First of all though, find out what your ferritin is.....

123trisha profile image
123trisha in reply to eckist

Thanks for that..yes I've heard of that . Trying to get to see same dr seems impossible lately...I'm going to get a copy of my results and work from that..kind of you to reply. Have a lovely day. 😊

SlowDragon profile image
SlowDragonAdministrator in reply to 123trisha

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

Do you always get same brand levothyroxine at each prescription

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 at least once year minimum

Low Ft3 linked to high cholesterol

What was your most recent Ft3 result

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

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 all relevant vitamins

List of private testing options and money off codes

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...

Low vitamin levels tend to lower TSH and result in poor conversion of Ft4 to Ft3 …..then low Ft3 lowers vitamin levels further …spirals downwards

Always test vitamin levels once a year minimum

Come back with new post once you get results

123trisha profile image
123trisha in reply to SlowDragon

Thanks for that..ive not seen one set of results in 20 years or offered them..wasnt aware I could... 😊

SlowDragon profile image
SlowDragonAdministrator in reply to 123trisha

Yes….I was like that …till joining the forum

More on my profile

Just testing TSH is completely inadequate

Lulumac profile image
Lulumac in reply to eckist

Hi I’ve just been diagnosed with Haemotomocrosis 2 weeks ago, took hospital 3 months to get back with results!!

Haemotology Consultant want me to get blood taken out, probably every 6 weeks,a pint

I’m petrified as had very bad experiences with getting just little amount of blood taken, deep small veins , they’ve tried 7 times in one vein- several times !! Or blood just doesn’t come out easily. Had some bad experiences,

but apparently there’s no alternatives , no medication thats isnt very risky

I’ve got under active thyroid on 50 mg levothyroxine, took GP over 10 years to up dosage from 25mg - always saying it’s borderline no need to change dosage.

Been very unwell for over 2 years , stomach pains, nausea headaches, fatigue etc , fibromyalgia, joint pains, etc mainly housebound due to feeling ill

Have you been offered anything for high ferritin levels???

I had total hysterectomy at 40

Was given synthetic HRT as had severe endometriosis and Adhesions. Was on hrt for 10 years. Been without for 13 years. Apparently it can affect you after menopause??

Sorry for long story, I had never heard of Haemotomochrosis before , I read a bit and it has scared me. Hopefully other people have better experience of it all. 🙂

eckist profile image
eckist in reply to Lulumac

Hello there, sorry to hear you are having a bad time and not had good experiences of getting blood taken. It took me ages to get diagnosed too, last year in fact, I had been feeling ill for a long time. I've had a number of venesections and am now in maintenance but all went well. I'm on 75 mcg levothyroxine, Wockhardt brand seems best for me, Teva made me really ill. Getting better and feeling better takes time, I am gradually getting there. Can I suggest you go the website haemochromatosis.org.uk They are the best people to advise you regarding anything relating to GH (for short) , they have been fantastic answering any queries that I've had; there is an advice line. I understand your worries about venesection or medication, have a chat with them, I'm sure they can help. Good luck, don't hesitate to get in touch with me again though.

Lulumac profile image
Lulumac in reply to eckist

Thanks for replying, been feeling really unwell again , everything I eat seems to affect me, stomach pains etc , not sure if it’s related to GH ?? I will have a look at their website I hope you are doing ok, I appreciate your kindness 😀

eckist profile image
eckist in reply to Lulumac

You are very welcome 😊 take care and hope you feel better soon

Lulumac profile image
Lulumac in reply to eckist

Thank you 🥰

eckist profile image
eckist

Hope you manage to get an appointment and do please get back to me if you would like to. Have a lovely day too 😃

Lulumac profile image
Lulumac in reply to eckist

Thank you 😊 enjoy your day 🥰🥰

C_S- profile image
C_S-

Same here. And I do the same as you. Drinking Benecol seems to have lowered my cholesterol though, if you can afford to buy it. There was a definite difference. Down from 9.0 to 4.8. And that’s the truth. Although my consultant says not to worry about high cholesterol as he says the thyroid problem plays with it and so he doesn’t see the levels being measured as being of any importance. The GP will though. But the thyroid consultant knows more!

123trisha profile image
123trisha in reply to C_S-

Well I may try that..hate taking more and more meds. 😔

SlowDragon profile image
SlowDragonAdministrator in reply to 123trisha

nhs.uk/conditions/statins/c...If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

123trisha profile image
123trisha in reply to SlowDragon

I've told the dr all this..ive spent so much time researching everything and feel like I'm going round in circles..

SlowDragon profile image
SlowDragonAdministrator in reply to 123trisha

Come back with new post once you get Full thyroid and vitamin testing results

Testing and Improving low vitamin levels essential (vitamin D, folate and B12 )

Plus you need to know if your hypothyroidism is autoimmune thyroid disease (approx 90% of primary hypothyroidism is)

123trisha profile image
123trisha in reply to SlowDragon

Thankyou I shall.

SlowDragon profile image
SlowDragonAdministrator in reply to 123trisha

Only do private testing early Monday or Tuesday morning

If taking any supplements that contain biotin stop these a week before test

Take last dose levothyroxine 24 hours before test and test before 9am

Tips on how to do DIY finger prick test

Allow plenty of time first time you do it

healthunlocked.com/thyroidu...

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