Hashimoto’s : Hello, I have Hashimotos and... - Thyroid UK

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Hashimoto’s

Lassithi profile image

Hello, I have Hashimotos and continue to take 125mcg Levo and my blood results continue to fluctuate although my symptoms continue with additional issues evident.

Last year TSH was rising reaching 3 and T4 was simultaneously lowering although last three months Nov, Dec , Jan.. TSH 0.32,/0.69 and now 0.73 (from memory). T4 was low last year then last three months rose in November to just over range (think it may be due to taking Teva as it was only brand available and I had a bad reaction) Dec and Jan T4 has started to lower again after switching back to normal brand. Recently saw a new Endo (Dec) and he has tested for Cortisol levels and I have also had an ultrasound scan (yesterday). Cortisol blood result seems low at 240 mmol (don’t yet have range) and following ultrasound I am told that my thyroid is ‘totally shrivelled’ and will have lost function. The Doctor who did the ultrasound said that the thyroid is shrivelled because I am on levo which I doubt as I have only been taking since 2019 and was on low dose in first year.

Both pre and post levo my T3 has been consistently low either at bottom end of range and on one occasion below, with the exception of that one time when it was under range it has not moved once from 4.4 (17% approx). I supplement Vit D and B Compound and have gluten free diet although symptoms continue. (Vit D was at low end of range in Nov so have increased dosage). Due to see Endo again in Feb although I am wondering if there is a possible pituitary issue or something I am missing.

Sorry I haven’t put definitive blood results hoping to get across that bloods do fluctuate even though my approach to diet supplements and dose of meds are consistent.

Thanks

16 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Vast majority of primary hypothyroidism is autoimmune thyroid disease

High percentage of autoimmune disease in Northern Europe is Ord’s thyroiditis. In Ord’s the thyroid shrinks and shrivels up under autoimmune attack

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

ada.com/conditions/thyroidi...

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 never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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

Are you aware it’s important to stop vitamin B complex a week before blood testing as biotin can falsely affect test results

You might want to consider taking a separate folate and separate B12 just in that week before tests

Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Many people find different brands are not interchangeable and Teva brand especially upsets many people

Best to always get same brand levothyroxine at each prescription

SlowDragon profile image
SlowDragonAdministrator

If you have found gluten free diet is helpful, this suggests gut issues and likely to need addition of T3 prescription alongside levothyroxine

First step is to get all four vitamins optimal

Always get same brand levothyroxine

Strictly gluten free diet

Retest thyroid levels privately

If Ft3 remains low will need T3 prescribed

Email Thyroid UK for list of recommended thyroid specialist endocrinologists who will prescribe T3

...NHS and Private

tukadmin@thyroiduk.org

If your thyroid has shrivelled, then you must have Ord's - i.e. Hashi's without the goitre - nothing to do with taking levo. I doubt your endo has ever even heard of Ord's, it's not much talked about, these days. And, in the UK, doctors don't even call Hashi's, hashi's, they call it Autoimmune Thyroiditis.

But it is perfectly 'normal' for levels to fluctuate with Ord's/Hashi's, due to the attacks on the thyroid. And, that will continue until your thyroid is completely destroyed. But, doubtful you also have a pituitary problem. Although that is difficult to ascertain once you are on thyroid hormone replacement. How were you diagnosed?

Lassithi profile image
Lassithi in reply to greygoose

Thank you for your reply, it took a long time to be diagnosed, GP kept insisting symptoms were menopausal and said TSH of 9.69 and T4 of 11 was normal.

I challenged following research including this site and demanded antibodies test, diagnosis day results were known and apology as antibodies through the roof and started levo same day.

Long road and 2 awful Endo referrals later, I have changed GP, new one is lovely and is honest that she doesn’t specialise in endocrinology says I am a self expert..(from info on here) and referred me to another Endo service-had one appt with new endo and he seems really thorough, he has instigated bloods (all panels including vitamins-and asked the GP to repeat every 4 weeks until next appt in Feb) and the ultrasound and says we will have a long chat next time and look at other treatment options.

I was just surprised that the thyroid was so damaged to be honest and also having a lot of dizziness when I stand from a lying position. Had an episode yesterday when I got up from ultrasound and felt as though I was in a washing machine. They thought I was going to faint and I had to sit down for ages before I regained my balance.

Keeping everything crossed that Endo will consider alternative treatment, when making the referral my GP did suggest that she thought I would benefit from T3.

Thanks again, I would be clueless without this site and try not to google too much as I end up going off on several tangents.

My mum had thyroid issues and had thyroid removed in her late 20’s , Doctors back then called it an atrophied thyroid disease.., she had over and under active symptoms.

Thanks again

greygoose profile image
greygoose in reply to Lassithi

OK, so if you had a TSH of 9.69 at diagnosis, there wouldn't appear to be anything wrong with your pituitary at that time. Do you have any reason to think something has affected it since then?

Your dizziness sounds like low B12 - have you had that tested? Low B12 is quite common amongst hypos. In fact, as you have Ord's, you could very well have Pernicious Anemia, too. So, if it hasn't been checked recently, that's the next thing to do. :)

Lassithi profile image
Lassithi in reply to greygoose

Thank you-I haven’t had B 12 levels tested for a while to be honest and didn’t realise that may be a link. Will also check for pernicious anaemia, thanks again for your advice and help 😀

greygoose profile image
greygoose in reply to Lassithi

Also a good idea to get tested for folate, vit D and ferritin. They could also be low. :)

Lassithi profile image
Lassithi in reply to greygoose

Thank you, die bloods again in a couple of weeks so will get all vitamin levels tested and also iron.., thanks again 👍

greygoose profile image
greygoose in reply to Lassithi

You're very welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply to Lassithi

Are you currently taking any vitamin B complex or B12

If taking any vitamin D supplements and not also supplementing B vitamins, this can exacerbate dizziness

SlowDragon profile image
SlowDragonAdministrator in reply to Lassithi

With 2 blood tests with TSH over 5 and (presumably) Ft4 below range ….GP should have started levothyroxine

See flow chart on top of page 2 here

gp-update.co.uk/Latest-Upda...

Sadly thyroid diagnosis, care and treatment is currently woefully inadequate in U.K. ……hence vast number of members on here

Lassithi profile image
Lassithi in reply to SlowDragon

I know.., I had to demand a blood test to prove I was not menopausal before he would consider antibodies test!!.., It is a disgrace how little is understood about this disease, particularly when it is such a vital function for maintaining health.

Last endo told me that he would give me steroids (more weight gain) but couldn’t give me T3 as it was banned by the CCG. He actually wrote that in his summary letter. Never once didn’t say it wasn’t clinically indicated just that it is banned. 😀

SlowDragon profile image
SlowDragonAdministrator in reply to Lassithi

Which is b******t

More than 57,000 prescriptions for T3 in England in last year

openprescribing.net/analyse...

Lassithi profile image
Lassithi in reply to SlowDragon

Agree totally.., wow that is a really useful link thank you, I have subscribed for updates.

I can’t believe a Consultant would more or less say, yes my dear you may need it but the naughty CCG wont let you have it 😱

SlowDragon profile image
SlowDragonAdministrator in reply to Lassithi

Which CCG area……some are worse than others

Price now down to £72 for 28 tablets 20mcg (from £268 at its highest)

Private prescription enables access to Thybon Henning 20mcg tablets at 50p per tablet

Typical dose of T3 is 2 or 3 x 5mcg per day

Lassithi profile image
Lassithi in reply to SlowDragon

One of the lower ones unfortunately Central Lancashire but now I am thinking it might be down to the Consultants in this area as new endo seems open although in another area of Lancashire. Have contacted CCG and they said they will consider any treatment prescribed by a Doctor and they do not blacklist any licensed medication.

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