confused: Hi,I'm new here I'm a little confused... - Thyroid UK

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confused

Amanda
Amanda

Hi,I'm new here

I'm a little confused, is hypothyroidism an autoimmune disease? when I've tried to look it up I saw that there are different types and it didn't say definitely that all hypothyroidism was autoimmune. My Dr hasn't said I have a particular hypothyroidism, just hypothyroidism !

thanks.

26 Replies
oldestnewest

Welcome to the forum.

Hypothyroidism per se isn't an auto-immune disease, but a lot of hypo people will have Hashimoto's disease (or Hashi's) - which is.

To know where you are, you need FULL blood testing - your doctor has probably just tested TSH, which isn't enough. You really need: TSH, free T3, free T4, thyroid antibodies [which will sho if you have Hashi's] and key nutrients - ferritin, folate, vit D and B12. Post your results on the forum when you get them

You will see lots of posts here about private testing, as the NHS is unlikely to do these for you.

And if I'm talking a foreign language with references to free T3 etc, do look at helvella's excellent glossary [pinned, on the right] and the info on the Thyroid UK site.

You will also find LOTS of posts about Hashi's on the "topics" here [also on the right]

Good luck x

Amanda
Amanda in reply to fuchsia-pink

Thank you, there is no chance that I will get a blood test any time soon unfortunately with everything pared back due to lock down. I am in the UK and my Dr doesn't give me such detailed tests. we are not given much info on test results either!

When I next see a Dr I will see what information they will give me.

fuchsia-pink
fuchsia-pink in reply to Amanda

You are entitled - by law - to get your blood test results, and should do, because simply saying things are "in range" over the phone isn't remotely good enough! You will see on the forum that Medichecks tend to have a regular "discount Thursday" and other discounts crop up fairly frequently, so when you are ready to get a set of blood tests at home, you should be able to get a deal.

You will see posts about how to do a blood test at home - SeasideSusie is very helpful on how best to do it, so if you click on her icon [when she replies to someone else] and look at some of her recent replies that will be useful too.

Amanda
Amanda in reply to fuchsia-pink

Hi, what are medichecks please?

Marz
Marz in reply to Amanda

Medichecks is a Private testing company used by 1000's on this Forum in order to get the correct testing. Click onto the link I posted for you below - then click onto ABOUT TESTING in the Menu on the left of the page , to view the available tests and companies.

Treepie
Treepie in reply to Amanda

Medichecks is a private company that offers blood testing and another is Blue Horizon. You can use a pin prick at home or if like me you find the blood does not flow their are options to go to a hospital for a nurse to do the deed. I think one company can arrange home visits.

You should read up on the Thyroid UK web site about hypothyroidism, symptoms and testing.

As Marz says you should not shovel the levo down with every other pill. I take mine before bed well away from food and other pills.

Ellie-Louise
Ellie-Louise in reply to Amanda

UK-

You should ask your doctor for whichever tests you want carried out, you may be surprised.

My own doctor will agree to whatever tests I want him to do. The sticking point is the particular lab the surgery uses, ultimately it’s their decision as to which tests they carry out whatever the doctor might ask them for.

I’ve been lucky so far. All the tests I wanted him to do, he has entered in my records ready for when blood tests are allowed to begin again. I have seen them so I know they are there.

Hashimotos is auto-immune - leading to Hypothyroidism. Testing Anti-TPO and Tg antibodies would confirm Hashimotos.

Always obtain copies of your test results as it is important to monitor your OWN progress and check what has been missed !

How much T4/Levo are you taking? Have you a test re-booked for 6/8 weeks. You may need an increase.

There is so much to learn about the thyroid so I will not overwhelm you with info. Keep reading here and asking questions. The website below is linked to this Forum and will give you so much information.

thyroiduk.org

Amanda
Amanda in reply to Marz

Thank you, I have had this for years but have never been given much information, what I have learned has been through my own research.

Marz
Marz in reply to Amanda

I think it's the same for most of the 107,000 people on this Forum 😥 How much Levo are you taking ?

Amanda
Amanda in reply to Marz

Hi not sure,I must confess, I take so much I have everything in a dosset box and just swallow it all at once !

Marz
Marz in reply to Amanda

It will tell you the amount on the box ! You should take T4 away from other medication - take on an empty stomach - take with water - and wait an hour before eating.

What other meds are you taking ? Some drugs could interfere with your Levo/T4. Many conditions can be linked to a poorly treated thyroid.

SlowDragon
SlowDragonAdministrator in reply to Amanda

Levothyroxine is an extremely fussy medication and absolutely must be taken on its own....on an empty stomach

All GP’s and nurses should be well aware of this and have made sure that you understood this

What other medication might you be taking at same time ....some would render your levothyroxine almost useless...eg calcium, iron, Omeprazole or other PPI, vitamin D, magnesium or HRT all need to be taken a minimum of four hours away from levothyroxine

Levothyroxine must be taken on empty stomach and then nothing apart from water for at least an hour after

Amanda
Amanda in reply to SlowDragon

I have all my medication put into a dossett box by the chemist.the dose is on the bits of paper that they put in the bag but in very small print so I struggle to read it.I take a total of about 30 tablets a day and no tablets are on their own,nor was I told to take it on its own.

Marz
Marz in reply to Amanda

Time to start taking control and follow the advice given here .. I saw on another site you have blood pressure issues and pre-diabetes. Both could be improved by taking the correct thyroid medication in the correct way.

porter5
porter5 in reply to Marz

Dr David Brownstein in the USA has an alternative take on thyroid disorders, well worth a look.

Marz
Marz in reply to porter5

I have his Newsletters ... :-)

Hypo means less than normal. Hyper means more than normal. So HYPOthyriodism means that the thyroid gland is producing less thyroxine than normal. There are several reasons for this happening, some may be temporary and some life long. Some severe and some mild.

*Illness, stress, pregnancy, low vitamin and minerals levels may all contribute to a less than optimal thyroxine levels but may be ‘fixable’ through a change of lifestyle.

*Cancers, treatment, usually removal of the thyroid and then lifelong use of thyroid replacements hormones.

*Hashimotos (autoimmune Thyroiditis) - the immune system attacks the thyroid. This can be easily detected by a blood test.

I’m sure there are other reasons/causes for having a thyroid gland that doesn’t work as it should - under-active but the above are some of the main reasons.

In some respects it doesn’t matter why your thyroid became under-active the rules are the same.

*Optimise your diet and lifestyle choices

*Regular testing of your thyriod function. FT4 and FT3 in order to find your optimal

*Regular vitamin and minerals testing so that you can act to find your optimal.

*Be prepared to be your own expert on your condition as the ‘professionals’ will often leave you clueless and ill for years.

porter5
porter5 in reply to NWA6

Hidden in plain view, endocrine disruptors are rarely mentioned. They disrupt hormone balance giving rise to a plethora of disorders.

Principle is BPA a component used in making plastic. It is banned in baby's bottles

and containers but is allowed for all other uses including bottled water and food packaging!!! University after university have shown how problematic it is but the

FDA, the Food and Drug administration scientists don't agree. They back corporate

interests first. And in this case billions are at stake.

My late mother took loads of pills every day, and had them delivered in one of those weekly boxes where the pills were already divided up for her. But her levothyroxine was delivered separately. I don't think my mother would have requested the Levo to be sent like that, so it must have been the pharmacist who knew it should be taken separately.

I'm lucky if the chemist writes on the back what colour and shape the tablets are, it's impossible to isolate particular tablets if I have to stop taking them for some reason! I have to have the tablets in the dossett boxes I take so many and my dexterity and memory are both poor. It would take me about an hour to take the tablets out of all their individual packets/bottles!

humanbean
humanbean in reply to Amanda

Ask the pharmacist to leave the Levo in their original box with a Patient Information Leaflet.

Thank you for all the replys

Marz
Marz in reply to Amanda

Keep reading the Replies again and again - if you are suffering cognitive issues - eventually the penny will drop ! We all have had to learn from the beginning - and many of us have had many conditions to sort and treat.

Regarding hypothyroidism and autoimmune disease, there are several reasons why people can become hypothyroid.

The main cause in Europe and North America is autoimmune problems i.e. Hashimoto's Thyroiditis, and this covers about 90% of cases :

en.wikipedia.org/wiki/Hashi...

In other parts of the world the main cause of hypothyroidism is iodine deficiency.

Other causes can be damage or injury or disease of the pituitary gland in the brain or, more rarely, a problem with the hypothalamus (which sits next to the pituitary gland in the brain).

There is a condition called Sheehan's Syndrome which only occurs in women who have suffered catastrophic bleeding during childbirth.

en.wikipedia.org/wiki/Sheeh...

Coming back to autoimmunity, anyone who is diagnosed with one autoimmune disease which isn't Hashi's is more likely to develop Hashi's than a healthy person.

And there are many people whose hypothyroidism is never investigated and the person never knows what caused it - this is referred to as idiopathic hypothyroidism. But, honestly, doctors don't care what causes hypothyroidism and almost never look for a cause. They just treat the condition (often very badly) when it arises.

SlowDragon
SlowDragonAdministrator

See from other posts you have diagnosis of Fibromyalgia

Fibromyalgia is frequently linked to inadequately treatment hypothyroidism.

Strongly recommend you find out exactly how much levothyroxine you are currently prescribed

Take Levothyroxine tablets separately from all other medication and then get FULL thyroid testing after 6-8 weeks taking levothyroxine correctly

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

Low vitamin levels are extremely common with inadequately treated hypothyroidism

Low vitamin D extremely common and often low magnesium too

Low magnesium causes restless legs and muscles twitching

Low vitamin D bone and joint pain

Ask GP to test vitamin D, folate, B12 and ferritin

You can do easy vitamin D test at home £29 NHS postal kit

vitamindtest.org.uk

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