Question re health since temporary Levo change - Thyroid UK

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Question re health since temporary Levo change

Julespaloma profile image
10 Replies

Hi and hope a happy Xmas day had by all,

Just wondered. Almost 3 weeks ago the pharmacy didn’t have my usual mercury pharma 50mcg in so given Activis/Almus which I took for 4 days. In that time I got sleepier which seems awful quick. Managed to change back after sourcing M/Pharma, but since then have had palpitations. I get paroxysmal Atrial Fibrillation which wasn’t there for almost two years and had self resolving episode earlier this year after vaccine (I’m not anti vax, just have a lot of allergies and didn’t react well at all). This palpitations now are not dramatic and annoying if anything. I have ME and always tired. Just everyday now, it settled a bit but still comes up at some point in the day :/ I spoke it to my GP who doesn’t think it’s the change of levo, well I was absolutely fine before that so I’d disagree. I got so tired in those 4 days on Activis it was unbelievable. All I did was sleep. Am I imagining this or has anyone else had anything like this issue through a change of levo/temporary change? Folate 6 and Iron 9 umol/so lower end of normal - commenced both 2 days ago. TSH 0.72 T4 16 T3 4.3 ESR 29mm/hour (lab upper limit normal 33) at 14 Dec. Only thing that keeps changing is TSH level getting lower each time. Any comments welcome.

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SlowDragon profile image
SlowDragonAdministrator

Many, many people find different brands of levothyroxine are not interchangeable

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.

New guidelines for GP 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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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)

For good conversion of levothyroxine (Ft4 ) to active hormone (Ft3) we must have GOOD Vitamin Levels

What were B12 and vitamin D results and ranges

What were folate range and iron range

Was ferritin tested?

What has GP prescribed for low folate and low iron

What’s the range on Ft4 and Ft3

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

How much levothyroxine are you currently taking

Low vitamins suggest either inadequate dose and/or poor conversion

Julespaloma profile image
Julespaloma in reply to SlowDragon

Hi all, thank you for replies. With vit d I need constant supplementation or it drops (lactose intolerant) so I take better you oral spray 3000 which I’ve found effective as mine went through the floor a few years ago, B12 is 660 and the lab upper limit in the high 700’s a I was surprised it was that high and appears to be creeping up at each test. FT4 was 19 last test now 16, TSH 0.72. Antibodies came back at 55 which GP said was fine. Anti nuclear factor abnormal. Echo’s done every few years last one absolutely normal with trace refrigerant (very slightly anterior floppy valve which was found in 2003, cardiologist also said it’s entirely normal. Extremely odd is anxiety levels if anything I feel hyper and I’m not according to thyroid results which I posted above. GP has no intention to increase disease as he says it will cause TSH to go too high - I started treatment at a TSH level of 4.85 and T4 11 T3 3.6. Il put these replies to him that haven’t been looked at already. Would the dose be required to go up with my current levels within range but still symptomatic? With ME it’s hard to tell what’s doing what with tiredness. I’d say I feel wired at times and exhausted the next. Getting this right is a nightmare. I’m careful about what I take and leave a good hour or three before eating or drinking after my tablet. 👍

Julespaloma profile image
Julespaloma in reply to Julespaloma

Sorry trace regurgitation

SlowDragon profile image
SlowDragonAdministrator in reply to Julespaloma

FT4 was 19 last test now 16,

TSH 0.72.

Antibodies came back at 55

What’s the range on these results

Obviously you need TSH, Ft4 and Ft3 tested together

How much levothyroxine are you currently taking

As you are lactose intolerant you need lactose free levothyroxine

Have you tried Teva or Aristo (Aristo is 100mcg only)

When under medicated we tend to live on adrenaline as adrenals try to compensate for lack of thyroid hormones…..leaves you tired and wired

Suggest you get lactose free levothyroxine. Teva is widely available in 25mcg, 50mcg and 100mcg tablets

Work on improving low vitamin levels

Retest thyroid in 6-8 weeks

SlowDragon profile image
SlowDragonAdministrator in reply to Julespaloma

As you are lactose intolerant GP should state on prescription lactose free levothyroxine only

Ask for new prescription to “trial “ Teva brand

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

Mitral valve prolapse often linked to autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Have you had thyroid antibodies tested

If autoimmune thyroid disease confirmed, have you had coeliac blood test done

Are you currently on strictly gluten free diet

Low vitamin D EXTREMELY common with autoimmune thyroid disease

How much vitamin D are you currently taking

Essential to retest vitamin D twice year when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Are you ONLY on 50mcg levothyroxine

That’s only a standard starter dose

Julespaloma profile image
Julespaloma in reply to SlowDragon

Hi Slow Dragon,Hideously long delay since replying, thank you for your detailed reply. Had all vitamin levels tested and all good, B12 was 660 surprisingly. I’m eating eggs again as Vit A levels dropped a bit despite eating a very healthy diet. I gave up vegan diet in 2020 it was not working. I ended up in hospital since initial post where I saw an Endocrinologist. You mentioned ranges, T4 12-22 (mine goes between 16-19), my TSH getting closer to lower limit. She concluded I needed to drop 25mcg on alternate days with 50mcg due to symptoms and TSH level changing i.e. I was pretty stable at 1.8ish and as it gradually headed toward 0.5 I felt worse. I tried Teva levo previously and had worse gastric issues, something to do with a filler. I’m super curious about NDT as this has now been mentioned as an alternative as one theory is I may not be tolerating synthetic T4 at all. I see it’s T3 and have done a bit of research but my heart symptoms have improved to being fine for 4 days and then I have a weird day. All this faffing around with dosing is annoying but see so many going through the same thing after 3 years. I think battling with ME and other chronic conditions isn’t helping. I’ve found a thyroid clinic which has very good testimonials so going to try and get an opinion

helvella profile image
helvellaAdministratorThyroid UK

What is the expiry date on the Actavis/Almus?

From memory, Actavis changed to Accord more than two years ago - which suggests that it could be either beyond expiry date or, at the least, very close to it.

Julespaloma profile image
Julespaloma in reply to helvella

The expiration date was 11/23 :)

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