have I got hashimoto disease or an autoimune di... - Thyroid UK

Thyroid UK

114,701 members133,093 posts

have I got hashimoto disease or an autoimune disease ?

Elston
Elston

Hi , iv no thyroid, iv had a full hysterectomy back in 04 for both operations. I take thyroxine and 1mg of hrt. ..im also adrenal insufficient so I take steroids too,I take laxido to help with constipation..i am gluten and yeast free 90% ..im tired constantly and my ankles feel fused on a morning, they hurt so much its i have to walk stiff untill they give, ..my blood sugar drops depending how long I go before eating so I usually have to eat every 2hrs ? And I'm forever thirsty and needing to wee every 30 mins or so, I feel depressed .just looking for advise if any please. Thank you.

35 Replies
oldestnewest

Do you have any blood results to share with us? We need TSH, T4 and T3. Also have you any vitamin levels like B12, Iron and Ferritin, vitamin D and Folate. All your vitamins need to be optimal for the Levothyroxine to work.

Elston
Elston in reply to Lora7again

I dont have any blood results of the above but last one a month ago showed vit d low and pottassium.

Lora7again
Lora7again in reply to Elston

How much Levothyroxine are you taking? Sometimes people without a thyroid need T3 as well as T4. Could you request your blood results from your doctor and post them on here so members can advise you?

Elston
Elston in reply to Lora7again

Will do thanks.

SlowDragon
SlowDragonAdministrator

Presumably you are under the care of an endocrinologist

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

When were vitamin levels last tested

do you have any actual blood test results? if not will need to get hold of copies.

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Ask GP or endocrinologist to test vitamin levels and retest thyroid levels if not been done recently

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)

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 antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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 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/thyr...

Joint pain is likely low vitamin D

Elston
Elston in reply to SlowDragon

I'm taking 75mcg levothyroxine..50mcg by accord and 25mcg by northstar..I dont take any supplement of vitamins but I do eat very well .

SlowDragon
SlowDragonAdministrator in reply to Elston

25mcg Northstar is Teva brand of levothyroxine

(50mcg and 100mcg Northstar are Accord)

How long have you been on just 75mcg levothyroxine?

Recommend you get Teva brand changed

Accord don’t make 25mcg

Get prescription changed to larger number of 50mcg tablets per month

Then cut the 50mcg in half to take 1 x 50mcg and 1/2 a 50mcg

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva, Aristo and Glenmark are the only lactose free tablets

List of different brands available in U.K.

dropbox.com/s/6h3h0qi4eqwi6...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

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

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Elston
Elston in reply to SlowDragon

So helpfull thankyou ..i will act on this as it has crossed my mind...

Elston
Elston in reply to SlowDragon

ps...my blood test was taken 10th October and showed vit d and pottassium low and yes im under a endo who at the moment are trying to see if I hypothyroid as my blood sugar drops quickly if I don't eat regularly..

SlowDragon
SlowDragonAdministrator in reply to Elston

Please add actual results and ranges on results

Would suspect you may be under medicated, unless very petite

75mcg is only one step up from starter dose

What was reason for your thyroidectomy?

What vitamin supplements are you currently taking

Essential to regularly retest vitamin D, folate, ferritin and B12

You say result shows low vitamin D

How low and what has GP/endocrinologist prescribed?

SlowDragon
SlowDragonAdministrator in reply to Elston

Was blood test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Elston
Elston in reply to SlowDragon

No it was done in afternoon.

SlowDragon
SlowDragonAdministrator in reply to Elston

And the vitamin D results?

You need folate, B12 and ferritin tested too

Get thyroid tested

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What was reason for thyroidectomy?

Graves’ disease, Hashimoto’s, goitre or thyroid cancer

Elston
Elston in reply to SlowDragon

Tumor but it was benign .

SlowDragon
SlowDragonAdministrator in reply to Elston

Ok. So possibly Hashimoto’s too,

Ever had thyroid antibodies tested before thyroidectomy?

You need to get hold of all your thyroid results.

You are legally entitled to printed copies of ALL 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

SeasideSusie
SeasideSusieAdministrator

Elston

my ankles feel fused on a morning, they hurt so much its i have to walk stiff untill they give,

That's what mine were like when my Vit D was severely deficient at 15nmol/L.

How low is your Vit D?

Elston
Elston in reply to SeasideSusie

what should we be for vit d?

SeasideSusie
SeasideSusieAdministrator in reply to Elston

Elston

The Vit D Council recommends 125nmol/L (50ng/L) and the Vit D Society and Grassroots Health both recommend 100-150nmol/L (40-60ng/L).

What is your level?

helvella
helvellaAdministrator in reply to SeasideSusie

The Vitamin D Council appears to have disappeared (if you see what I mean!):

Error 523

vitamindcouncil.org/

Nothing on Twitter in over a year.

SeasideSusie
SeasideSusieAdministrator in reply to helvella

I haven't looked lately, I know they were asking for donations to help fund them, presumably they didn't get enough support and could no longer continue. Shame, they had some really useful articles and information on their website. Fortunately I saved some of their information, mainly regarding their recommendations for what dose needed to raise a certain level to their recommended level and some of the cofactor information.

Marz
Marz in reply to SeasideSusie

So many sites being blocked if they cover natural health - could this be the case here I wonder ? If so it is shocking ....

helvella
helvellaAdministrator in reply to Marz

I don't think it is being blocked as such.

Some of the same people are on this site:

vitamindsociety.org/news.php

And that site links to several other sites which you might well recognise:

GrassrootsHealth

GrassrootsHealth (GRH), a non-profit public health research organization, works to quickly elevate public health messages from science into practice. GRH joins with vitamin D scientists to aggregate knowledge and best practices and then spread the word to medical practitioners and individuals in order to change public opinion and create healthier life choices and prevent disease.

Direct MS

DIRECT-MS was formed in 1998 by families affected by MS to provide reliable, science-based information on the role that nutritional factors play in MS so as to allow those affected by MS to make an informed decision on whether or not to use dietary strategies for managing the disease and for preventing it in close relatives.

Sunlight, Nutrition and Health Research Center

Sunlight, Nutrition and Health Research Center (SUNARC) is an organization devoted to research, and education relating to the prevention of chronic disease through changes in diet and lifestyle.

Sunlight Institute

Our Mission: Spreading Sunshine!

Overzealous sun avoidance is the biggest public health mistake of our time. Sun exposure to the skin is the only abundant natural and reliable source of Vitamin D.

The Health Research Forum

The Health Research Forum aims to develop and disseminate new ideas for the improvement of public health in the UK and elsewhere. These new ideas will be presented in expert reports that will be made available to the public and health professions.

Vitamin D Wiki

An informational site for Vitamin D.

I think the vitamindcouncil.org has been abandoned. But I could be wrong.

Marz
Marz in reply to helvella

Grassrootshealth is my go to website and I have their Newsletters - had them for years. I subscribe to several US websites and their Newsletters and have been made aware of their difficulties staying on-line.

Apologies about the underlining - haven't a clue what I have done !

helvella
helvellaAdministrator in reply to Marz

Select the text and click on U along the bottom row of B I U @ :-)

That will switch underlining off - or on.

Elston
Elston in reply to SeasideSusie

I dont know im going to find out and let you know.

SlowDragon
SlowDragonAdministrator in reply to Elston

Did your GP or endocrinologist prescribe any vitamin D ?

If yes, how much

Marz
Marz in reply to Elston

Do you have your results now for VitD ? - also B12 - Folate -Ferritin ...

Elston
Elston in reply to Marz

Hi yes vit d was fine and so was pottassium..Just had thyroyd taken again ..

Marz
Marz in reply to Elston

What were the actual results ? Fine/Normal/OK are opinions and not an actual result. You need optimal results to feel well not results bumping along low in the range ....

Elston
Elston in reply to Marz

Yes your right, should I ask for a print out of results?

Marz
Marz in reply to Elston

You are legally entitled to have copies of all your test results. Ask at Reception and you do not have to give a reason. Some surgeries have on-line access - so worth asking ... Having copies of your results enables you to track your progress and check what has been missed.

Makes posting here easier as results are needed to enable members to post helpful replies ...

SlowDragon
SlowDragonAdministrator in reply to Elston

Come back with new post once you get results and ranges

have I got hashimoto disease or an autoimune disease ?

Hashimoto's Thyroiditis is an autoimmune disease.

en.wikipedia.org/wiki/List_...

Do a search for Hashimoto in the above link.

humanbean
humanbean in reply to humanbean

Oops, I forgot to say that Ord's Thyroiditis is also an autoimmune disease.

Ord's is like Hashi's without a goitre.

en.wikipedia.org/wiki/Ord%2...

Elston
Elston in reply to humanbean

Ok thankyou.

You may also like...