Levo trial

[Mag999]

My lovely gp has offered a trial of 25mg levothyroxine, after months of loads of different tests for severe fatigue, muscle cramps weakness etc and nothing much showing but bottom end vits, free t3/4, cortisol, nothing so far off that explains my symptoms. My question is should I try it and see or go for the endocrinologist referral to try and get to the cause as there are atypical aspects to my symptoms, for example the weakness and muscle pain is left arm and left under rib and back, much less elsewhere, I don’t want them to lump everything under low thyroid I suppose.

[SlowDragon Administrator]

Suggest you grab the offer.

Getting bloods retested 6-8 weeks after each dose increase

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

Standard starter dose of levothyroxine is 50mcg.....so you should push to get dose increase after first test

Make sure you get all four vitamins optimal

Have you had thyroid ultrasound scan?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

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

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

Teva, Aristo and Glenmark are the only lactose free tablets

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

Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

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

[Mag999 in reply to SlowDragon]

Phew! I did have an ultrasound, spongiform nodules each side up to 0.8cm but overall thyroid is normal size so no follow up unless I start choking I suppose! She did say she would follow up with testing monthly but looks like it takes longer to register. I will go for endo as well as I have pre diabetes not diet related and fading adrenals I assume all related but I’m so knackered I just can’t unravel it when I don’t get clear abnormal results.

[SlowDragon Administrator in reply to Mag999]

Make sure to work on getting optimal vitamin levels too

[Bearo in reply to Mag999]

I was told I had pre-diabetes but then I discovered my thyroid was low and that that causes high cholesterol. Since starting my Levothyroxine my cholesterol has dropped a bit and I’ve declined the offer of a statin. I started on a dose of 50mcg, though.

Your GP sounds pretty good trying to get to the bottom of your symptoms and offering an endo referral. If you do see an endo be aware he/she may specialise in diabetes but not in thyroid.

[beandrummo]

Hiya, I’ve been on Levothyroxine for years now, not had a problem with it, take early in morning hours before eating or other meds. I would definitely grab the opportunity to see an endocrinologist, my GP only checks TSH level which she claims is in range so I never get the opportunity to get referred.

[Dillongirl]

I hope this comment is not too late. Definitely take up the chance of seeing the Endocrinologist.

I've been taking levothyroxine for about 20 years, varying doses at different times. For the past ten years or so I'd get dizzy spells and other unpleasant symptoms - but not always. I'd made a link with my TSH levels. It seemed to me that when the level was 1 or below I'd have these symptoms and appeared OK when they were 2.5 or 3.5 -mid range.

Over the years, I've been tested for all sorts of things and in 2016 had a pacemaker fitted as my heart rate often dropped. Yet, there have been times when the dizzy spells returned, later I discovered that this was due to my heart rate spiking!

This past 12 months I've also had similar symptoms intermittently (palpitations for 3 or 4 consecutive days, breathlessness and muscle fatigue ) - many different tests for all sorts came back normal. My GP would not refer me to an Endocrinologist saying she could not justify it on the NHS. I found this Forum at the end of last year and have learned so much.

It happened that in November I was prescribed 100 mg (up from 75) which were a different brand, I requested that same brand on the next prescription in January. Long story short, I feel so much better and for the past three weeks have not had any of the symptoms. I feel so much better, stronger, can breathe easier so can exercise without stress. The brand (which I shall request again) is Mercury Pharma the brand that I will not touch again is TEVA.

I see that you've been given the link to the poll taken 12 months ago about TEVA - if you haven't please read some of the posts. I could not believe what I read. One post looked as if I'd written it - in that so many of the symptons I'd been tolerating on and off for years were in that post. WOW.

Of course, we are all different; some will be allergic and some won't be. Mannitol is an artificial sugar which some peole can't tolerate. I don't have a record of exactly when I've taken TEVA over the years and whether it had corresponded with my symptoms. I know that I've taken Mercury Pharma in the past on and off depending on dose, so wonder.

So, this revelation together with all of the other advice about when and how to take levothyroxin certainly appears to have worked for me. In November my TSH was 5.62 and in January 1.37 yet I feel very well. So far so good.

Good luck to you.

[Mag999 in reply to Dillongirl]

Thanks very much, I will check out the posts, I didn’t realise brand made so much difference.

[Dillongirl]

No I didn't either - so far so good. I haven't had any palpitations for three weeks and feel quite well again. It upsets me that GP's don't appear to be open to this, especially this year I've had so many tests for all sorts yet no referral to an Endo. I will put it to my GP after February or March if I've remained well.Best wishes