Side affects

[Suennikki]

I’m due to start 50mg thyroxine I’m am worried about side affects . What side affects have people experienced . I’m not on any other medication and generally fit and healthy

[humanbean]

Side effects are not that common from the Levothyroxine itself. The main problems that people have with Levo is that all pills have other ingredients (called excipients) besides the active ingredient. And some of those excipients cause problems for some people. Not all pills are lactose-free, for example, and that can make a difference to some people. Another ingredient which is a common problem is pills that contain acacia.

The way to deal with this is to keep strict records of your symptoms, the make of pills you are dispensed by your pharmacist, the dose you have been prescribed, and the results of any blood tests you get.

For each of the first few prescription you get, keep all this information and try to tie up the all the information with the make you've been dispensed. Then, if you feel bad when you get your next prescription ask for advice on the forum about what options are available and what you might try next. It used to be easier than it is now - with paper prescriptions you could phone up pharmacies and ask what they would dispense if you took your prescription now - but of course paper prescriptions aren't provided any more.

Since I'm someone for whom make is not an issue I don't know how people get round this issue of not tolerating certain makes, so hopefully someone else can answer that.

Symptom lists - please note that it is worth scoring your symptoms out of 5 or 10, at least until you find a make of tablets that suits you.

Short list : thyroiduk.org/if-you-are-un...

Long list : hypothyroidmom.com/300-hypo...

Don't be too disturbed by the long list - they use multiple words in some cases to describe a single symptom, then count every word they use as one symptom, thus inflating the total a lot.

...

Another cause of symptoms and lack of tolerance of Levo is caused by being low in some vital nutrients - an extremely common problem in thyroid disease of any kind. For example, Levo is known as T4. T4 is a storage hormone. It has to be converted in various parts of the body into the active hormone T3. If you still have a functioning thyroid then about 20% of the body's T3 comes from the thyroid directly, but the rest comes from conversion in other body tissues and organs e.g. the liver, the kidneys, the gut etc.

In order to do that conversion efficiently and effectively the body needs optimal levels of vitamin B12, folate, vitamin D, ferritin (iron stores). There are others, but the four I've just given seem to be most important. It is not a good idea to take supplements without knowing that you need them, so testing is highly recommended. If you read other posts on the forum and do a search, you'll find these particular four nutrients mentioned thousands of times.

In order to feel well you need adequate levels of T4 and T3. And if you are new to hypothyroidism it can take a while to adapt to taking hormones in tablet form. But most people get there eventually. The less time you spent being untreated for hypothyroidism the quicker you will adapt.

[jimh111]

Side effects from levothyroxine are quite unusual, more common problems are getting the right dose or levothyroxine not working for some people. I would assume you won’t have any problems with side effects but perhaps keep a diary of what your symptoms are now and compare them in a month or two. When you speak to your doctor be sure to explain how you are doing as they are liable to adjust your dose according to blood tests rather than symptoms.

[Suennikki in reply to jimh111]

Thankyou so much this as eased my anxiety

[Sheffield6]

Teva brand of levothyroxine includes mannitol,I am allergic to Teva. It gives me a rash.

[Lyndylan in reply to Sheffield6]

I recently got switched down to 75mg of Levo and needed up with Teva which I think is the only manufacturer of 75mcg pills. I had a terrible reaction. I was so fatigued I could hardly stand and walk across the room. I was also very anxious and depressed. At first, I thought it was too sudden a large change in dosage, so I switched to taking 75mcg of Teva and 100mcg of Mercury brand on alternate days. This did not affect the symptoms so I tried eliminating the Teva and cut up some mercury pills. Within a few days I felt completely ok again. I would never take Teva - it was a horrible experience.

[SlowDragon Administrator]

It’s 50mcg (not 50mg)

This is the standard STARTER dose

Bloods should be retested 6-8 weeks later

Likely to need at least 2 further increases in levothyroxine over coming months

Dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Most people when adequately treated will have Ft4 in top third of range and Ft3 at least half way through range

What were your thyroid results at diagnosis

Have you had thyroid antibodies tested

Important to test vitamin D, folate, ferritin and B12

Have you had these tested yet, if not get tested at next blood test

When hypothyroid we frequently have low vitamin levels, improving levels by supplementing helps levothyroxine work better

Always get copies of your blood test results

Keep good records of how you feel on each dose

Levothyroxine is not a medication, it’s replacement thyroid hormones because your own thyroid is struggling

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)

Always test thyroid as early as possible in morning before eating or drinking anything other than water 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

Which brand of levothyroxine have you got?

[Suennikki in reply to SlowDragon]

Hi I’m not sure of reading I will ask the doctors for a copy on Monday . I know they were on the high side .

[SlowDragon Administrator in reply to Suennikki]

Come back with new post once you get results and ranges (figures in brackets after each result)

Ideally GP tested

TSH

Ft4

Ft3

TPO antibodies

TG antibodies

Vitamin D

Folate

Ferritin

B12

[Suennikki in reply to SlowDragon]

The last 4 on your list have not been mentioned to me . Thankyou for pointing theses out I will ask about thaws also . Thankyou

[SlowDragon Administrator in reply to Suennikki]

When hypothyroid we frequently develop LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result.

Regardless of how good your diet may be

[Charlie-Farley in reply to Suennikki]

Make sure you post the ranges for each result- different labs have different instrumentation calibrated to get reproducible accurate results. Thus they may have different ranges.

eg FT4 10 ug (7 - 22)

Or photo of your results with your personal information obscured

[meme]

Hair loss is a known side effect and one I experienced with Levo.

[EmJB]

When I started on 50mcgm levo I felt anxious and jittery, I decided to break the tablet in quarters for a few days, then have half and take about 10 days to work up to the full dose. I did the same as my dose has gradually increased to 100mcgm over the years. I seem to be very sensitive to even small dose changes but very comfortable once I have adjusted.

[Polly04]

I also started on 50mcg and had no problems. It was only when I moved up to 75mcg that I experienced dizziness. I got no help when I mentioned this to a GP. I sought help from this site and the advice Slow Dragon gave me was exactly what helped. I had been given two different brands for the 75mcg, one being Teva.

It was difficult to describe to the GP why I needed the prescription to change which would give me one and a half tablets of the 50mcg, but another GP listened. I then gradually introduced the extra meds and have had no problems since.

[SlowDragon Administrator in reply to Polly04]

Government have now written guidelines for patients to help get GP’s and pharmacies to actually take note that many patients can’t change brand

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.

[Ruby1]

There are some people who have to be careful about brands and when they take their dose, as detailed in the other replies.

I just thought I’d add my own case in, as I believe there are many like me, and you tend not to hear from us. I am able to tolerate any brand, and am able to take my tablet at breakfast time with food without issues. No side effects at all. My TSH is always very low, so I am well medicated.

Here’s hoping you are as lucky as me.

[Suennikki in reply to Ruby1]

Thankyou ruby im feeling so much more confident in taking the medication now .

[CapnM]

Like any hormone replacement you might have some short term consequences and perhaps some long term. You may get none. Its a very personal thing.

Its good to differentiate these apart, I echo advice to keep a simple diary and would add that building up the right balance of thyroxine can be a multi step (month) process with a long feedback loop for each discrete change in prescription/supplement/mitigation.

Once you start reading around the subject you will be deluged with all sorts of advice and to this extent its worth taking things slowly and not making too many changes at once.

In the short term you might get side effects as you get used to the extra level of hormone. For me I had 3 or 4 definite cycles in first 6 months of feeling quite racy and a bit wired and scatty as my hormone levels increased. Each period lasted about 2 or 3 days. Had it gone on longer I would have gone back to GP but it re-settled quickly. As someone else said it doesn't hurt to crack pill in half and go to half dose and then re-engage to your prescription level. It is possible you will finish the process on a higher dose but get their in step stages of 12.5 or 25mcg. I think it took 9+ months for thyroxine to fully settle - although its a moving goalpost at times.

hope goes well.

[Suennikki in reply to CapnM]

Thankyou some really helpful advice coming threw . Very much appreciated

[EMBoy]

I started off on 25mcg and it was increased to 50mcg after about 3 months, before being increased in small amounts over a couple of years to the 175mcg that I now need to take to keep things in order.

In the beginning, the only side effects I experienced were occasional muscle cramps, and feeling hungry all the time. These were greatly overshadowed by the facts that I suddenly felt more lively and full of energy, my brain fog diminished and I started to lose weight. Also, my blood pressure began to drop and my cholesterol levels became normal.

I must be fairly lucky that I have never had any untoward side effects from my Levo and would not want to go back to the way I felt before my hypothyroidism was diagnosed. I am one of the rare men who get hypothyroidism, and I sometimes wonder if men and women react differently to Levo.

If you read the posts on this forum, you will see that some people do struggle to treat their hypothyroidism, but many others have no adverse side effects.

Hopefully, you will not have any problems, but if you do, help is always available on this site.

Best wishes.

[Suennikki in reply to EMBoy]

Thankyou pleased to hear you are feeling better and losing weight . I’m hoping that my weight may become more stable also my energy levels . 😃

[Charlie-Farley in reply to Suennikki]

I must be a bloke! 😂

I feel great now I’m on a full replacement dose. The problem that I had was actually getting properly medicated because of GPs thinking all they had to do was get me in range (awful) . I fought for every dose increase - if you want the detail you can read my profile.

I’m on Teva because it’s LactoFree. I’m lucky I have no side-effects. I spoke to the Meds management team at the local doctor’s surgery and they were very helpful (better than the GPs!). It is now on my notes. I also got it put on special notes at the pharmacy covering both bases. They have still made mistakes occasionally but I just had the medication back at the counter and they have to change it. In fairness they have been pretty good recently.

As others have said - Keep Records (your own records). Also, I cannot emphasis this enough. Get PRINTED results, don’t rely on Patient Access- my Patient Access is patchy and things have been altered/disappeared (yes really). I have screenshots to prove it 🤔. I also have my complete set of tests- get copies of everything (keep records) 😊👍.

I keep a diary of sorts, it started when I realised I had been under medicated for first six months after diagnosis. GP did not know what they were doing and made me very ill.

At that point I decided to take control of my own health and started reading around the thyroid, a book, some papers and loads on here and joined the forum. It’s a fair old bit of work to get up to speed - but worth it. Reading other people’s experiences and the advice given on this forum has definitely been one of the most valuable sources to understand my condition.

I used my diary to note changes in my condition and symptoms that emerged every time I needed a dose increase. The timings of needing dose increases were very different from the arbitrary come back in three months I was told by the GP. You can read the detail on my story if you go to my profile. However, keeping this information allows you to look back and see when things changed. If I were to have a significant illness now I would pop it in my diary. I don’t write in it every day, it’s not a dear diary daily record it’s just for the relevant information as I perceive it. It has been invaluable. I can look back and tell you the symptoms that disappeared first as my dose increases were applied and the last and most embarrassing symptom left once I was on a therapeutic dose.

It felt like there was a priority for the body as to what it was going to get functioning, first - very interesting, but something I would’ve missed had I not actually written it down at the time.

I’m having no discernible side effects other than getting back to living - and very grateful to this forum for getting me there!

[Charlie-Farley in reply to EMBoy]

I must be a bloke then 😂 because I’m feeling great! Like you, but I had no side-effects either and I’m on Teva 😊👍

[Lulu2607]

Hi. I started levo (at 50 micrograms,) 7 months ago. I was severely hypothyroid (TSH 161) and I started to feel better as soon as I started it. Only when my dose was increased to 75 and then 100 did I feel a bit of a 'hit', tight chest and palpitations and headaches. My dose is now adjusted as 100 was too much for me (I'm only small) and now I don't have many, if any, side effects. Hopefully any hypo symptoms you have will gradually go away once on levo, and it's amazing how much better you should feel.

[Charlie-Farley]

Suennikki , Lulu2607

Might want to read “ping-pong analogy” post as we have been having a discussion about dosing. Lots of forum members Have contributed fantastic material - information rich. I’ve been saving and downloading all day. 😊👍

[chrisbuy63]

I get muscle stiffness mostly in legs from levothyroxine , I also find weight gain difficult to shift unless I go on a very stringent diet which was a shock because I thought it would take the hypothyroid weight off.

[Suennikki in reply to chrisbuy63]

Im hoping to lose the weight

[Gismo333]

The main problem you have with 50 mcgs of T4 is that that dosage is too low. If you don't take sufficient thyroid hormone then you can literally shut your thyroid gland down. I would suggest trying a natural desiccated thyroid hormone that contains T4, T3, T2.

T4 on it's own is not a good preparation as you need T3 also in case you cannot convert your T4 to T3. Dr Anthony Toft who, with his colleagues, brought in these thyroid guidelines over 40 years ago and has recently stated that T3 should always accompany T4.

Find a reputable doctor that understands the importance of T3. I have a doctor in Brussels that does a full metabolic profile which I am happy to share with you if you dm me.

Linda

Metabolic Advisor

[RoboTh]

Headaches for a few weeks with each dose increase. However, tolerated each dose increase better than the last.