Hashimotos Diagnosis and scared: I have recently... - Thyroid UK

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Hashimotos Diagnosis and scared

Mrss25 profile image
11 Replies

I have recently been diagnosed privately with Hashimotos, results are:

Free T3 4.5 (3.1-6.8)

Free Thyroxine FT4 13.5 (12-22)

TSH 2.35 (0.270-4.2

Thyroglobulin Antibodies H 119.4 0-115

Thyroid Peroxidase Antibodies 9.5 0-34

Vitamin D 48

I have been backwards and forwards to my GP for years with worsening symptoms all the time, only to be told I was fine. I clearly did not feel fine so I went private, only to be told I was not ok and that I had Hashimotos and have been started on Levythyroxine 50mg and vitamin D. My B12 is 3

I am also taking Bisoprolol for arrthymia, but I understand that the Levythyroxine can cause this aswell, so Im scared. I am hoping it is going to help.

Ive been so poorly and was finally feeling vindicated, but Im just nervous, sorry to sound silly.

Many thanks as always

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Mrss25
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11 Replies
SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine have you started on

Take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Bloods should be retested 6-8 weeks time. Test early morning and last dose levothyroxine 24 hours before test

Vitamin levels

on levothyroxine we need good vitamin levels

post a year ago with thyroid and vitamin results

healthunlocked.com/thyroidu...

Vitamin D hasn’t improved much in a year

Only up from 37nmol to 48nmol

How much vitamin D have you been taking

B12 result can’t be 3 …..presumably that’s a typo

B12 and folate need retesting together

Have you been taking daily vitamin B complex since last year

And a separate B12 supplement

What’s your diet like

Are you vegetarian or vegan?

Mrss25 profile image
Mrss25 in reply to SlowDragon

Hi thank you for replying.

Sorry yes typo, B12 is 346, which has gone up alot since my last test, but Im not taking any B as I have a nickel allergy

I am being retested in 6 weeks

I dont know what type Im taking as Im waiting for prescription

I was taking 1000 ug D and she has put me on 4000 for a month then 2000 afterwards

Not vegetarian and my diet is good, not celiac confirmed last year and again beginning of Jan

Just scared of taking the drug

SlowDragon profile image
SlowDragonAdministrator in reply to Mrss25

it’s replacement thyroid hormone……not a drug as such

Mrss25 profile image
Mrss25 in reply to SlowDragon

Sorry, this is all new to me but im just worried about palpitations thats all

Mrss25 profile image
Mrss25 in reply to SlowDragon

Hi there, I have just got my prescription and the brand is Teva. Ive seen a few people have problems with this brand so Im hoping I will be ok.

SlowDragon profile image
SlowDragonAdministrator in reply to Mrss25

see how you get on with Teva

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)

Thyroid levels will need retesting 6-8 weeks after each dose change or brand change in levothyroxine

Test early morning, around 9am and last dose levothyroxine 24 hours before test

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

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

Northstar levothyroxine being phased out Feb 2023

 Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.

Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

 

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

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).

Mrss25 profile image
Mrss25 in reply to SlowDragon

Thank you so much this is so helpful, thank you for your kind help :)

Pearlteapot profile image
Pearlteapot

don’t be sorry about asking questions or being worried. You should know that some people feel worse when they start on levothyroxine because the starter dose will often be less thyroid than their body was making naturally. This means they become more hypo, until gradually the dose is titrâted up. Feeling more hypo can unfortunately include palpitations. I felt really dreadful for the first 7 months of treatment. I felt like my brain was melting and I had palpitations for the first time in my life. I’m a lot better now, after 11 months but still not right.

A consultant that I eventually saw said he would have put me straight on 100mcg and not the slow agonising titration up from 50. However a low starter dose is used for people with heart issues so is probably unavoidable for you. It’s a catch-22 because low thyroid levels (which you have) can cause palpitations but of course there may be other causes, hence the low starting dose

Be prepared to feel worse for a while without concluding that you don’t get on with the levothyroxine. It is likely to be because you are, for the moment, under medicated

Buddy195 profile image
Buddy195Administrator

This is a very helpful and supportive forum Mrss25 and we are here to support and advise members.

Through following forum advice I’ve managed to optimise my thyroid medication and key vitamins and feel 100% better than I did.

I would definitely start the Levothyroxine as your first step to better health…. Think of it as topping up struggling thyroid hormone levels.

Keep reading posts and you will learn so much here…. And keep posting if you need further help and advice.

Mrss25 profile image
Mrss25 in reply to Buddy195

Thank you so much..I think its because Im just a bit over whelmed atm, and I have had alot of help on this forum before getting diagnosed and all the advice has finally got me to my diagnosis..thank you again for your kind words 😊

arTistapple profile image
arTistapple

I was very relieved when I finally got my diagnosis after many years of suffering symptoms. However my relief was short lived. No advice and virtually a list of symptoms was given when I pushed for information. This is a very strange disease situation and it’s clear doctors know very little about it but I think you have found the best source of information here. It’s likely the treatment won’t always go to ‘plan’ so keep in touch with the forum. There is always support here.

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