Advertisement

loader

Talk

Advanced search

Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns we suggest you consult your GP.

Hypothyroidism - alternatives to levothyroxine

(53 Posts)
farmyard3 Thu 30-Jun-16 21:49:58

I have had hypothyroidism for four years. Started off on 50mcg of levothyroxine and increased to 75mcg after the first year. Still on 75. I have my bloods done every year and most recent test was done in early June and came back normal.

However I am still feeling exhausted every day, have to do a lot of lying down and resting where possible, I always have a nap each day if I have the time. I go to bed as early as possible. I thought the recent bloods would show I needed an increase in medication and was a bit disappointed when they didn't as now I don't know what to do.

I understand there are other conditions linked to tiredness that I could be tested for e.g. Anaemia - anyone know of any others?

Also - does anyone know of any other medication that can be taken for hypothyroidism that isn't levothyroxine?!

Sausagedog21 Thu 30-Jun-16 22:06:37

Hi OP
The "normal" range for TSH and T4 (free) is quite wide. Do you know what your levels are? From reading a lot of thyroid boards, lots of people with hypothyroidism can only function with a TSH of 1or less .

Re other blood tests linked to tiredness, these are:
Vitamin D
Full blood count
Iron stores(ferritin especially useful)
B12 and folate

Alternative med is liithyronine or T3 the active hormone. Can be taken on its own or in conjunction with thyroxine. It is very expensive and you'd probably have to an NHS consultant endocrinologist input, to sanction this for on going NHS prescription. Has your GP tested your T3 levels? I have read some people don't convert T4 (thyroxine) effectively- hence why they never feel any better on differing doses of thyroxine.
Going gluten free helps others, better absorption of thyroxine apparently.
There are other US/ Canadian thyroid meds like armour , nature thyroid, erfa derived from dried porcine thyroid glands.but you would either need a private endocrinologist or self medicate to hold of that.
HTH

Sausagedog21 Thu 30-Jun-16 22:07:33

Liothyronine sorry typo

farmyard3 Fri 01-Jul-16 07:07:52

I have no idea what my levels are or what exactly I've been tested for - I normally just get told 'normal' or 'too low'. I'll have to ask next time! I guess it's unlikely I'd be put on different meds then. Thanks for the info!

PrimalLass Fri 01-Jul-16 11:33:26

I take Thyroid S. It is a million times better than levo.

DoItTooJulia Fri 01-Jul-16 11:39:03

Have you been referred to an endo? If not, ask to be. Tell them that no matter what your levels are you don't feel well-that this is not normal for you, and you want to try things that might help-including increasing your Levo.

And every time, get your results printed out.

Finally, have you tried taking your Levo in the afternoon? My mum finds it much better if she takes it around lunch time-she says it stops her feeling thyroid-y in the afternoon. She's also religious about not taking it with anything else, including food, but especially not with calcium-disrupts absorption.

It's horrible and often not treated well without some fairly insistent innit from you-which is incredibly difficult when you have the brain fog that goes with hypothyroidism.

Hope you feel better soon flowers

Pleasemrstweedie Fri 01-Jul-16 12:06:18

Levothyroxine is the standard treatment for hypothyroidism and it works perfectly well for about 85% of people, but you have to take enough. There is proper, peer reviewed, research that says if you are under 50 and have no signs of ischaemic heart disease, the starting dose should be 75mcg, because most people settle on a dose of 125/150mcg and starting low just prolongs the agony. My bet would be that, on 75mcg, you are under-medicated, hence your continuing symptoms.

It would be a good idea to get a print out of your results and see exactly what has been tested and exactly how ‘normal’ you are. If your GP is dosing by TSH, or believes that being within the reference range is good enough, then he will never get you well. The ThyroidUK forum at www.healthunlocked.com is a good place to post results (with reference ranges) and get sensible advice.

You also need to establish whether you have had serum ferritin, vitamin D, serum B12 and serum folate tested and, if so, where they sit. Not only do deficiencies in any of these make you feel awful, but they also prevent your Levo from working.

Alternatives would be liothyronine (T3) as others have said or natural desiccated thyroid extract. I take Thyroid S and am doing very well on it. I swapped last year because my GP was dosing by TSH and I could not get enough Levo from him to keep me well. I would have stayed with Levo if I had been able to get enough of it.

user1467128587 Fri 01-Jul-16 14:31:58

Hi, new to posting here so sorry if it's in the wrong place. I'd get your adrenals checked - I had a thyroid disorder and ultimately it turned out to have an accompanying adrenal disfunction underneath, so even though i was on meds I was still exhausted and experiencing symptoms. Adrenals are usually always indicated where thyroid probs are present. I'd also use lugols as it's a natural form of iodine - worked amazingly well for me. Have you tried linseed tea to stabilise your blood sugar? Let me know if you want the recipe smile

heron98 Fri 01-Jul-16 15:29:11

Just take more than they recommend. They won't know. I have been doing this for years. I take 150mg when they recommended 100. My bloods are always normal but I feel better.

farmyard3 Sat 02-Jul-16 08:46:35

Thank you so much, if I don't start feeling better soon I'll make a GP appointment.

In the meantime - it may sound silly but does anyone have any tips on how to stay feeling awake and energetic throughout the day?! Once it gets to the afternoon I lose all motivation and really struggle. I know I need to improve my diet as its not the healthiest and I am getting about 9 hours of sleep each night which I think is a good amount?

Maybenot321 Sat 02-Jul-16 11:19:41

Make sure you take your levothyroxine on an empty stomach(on waking?) with water and wait an hour before food+ drink. Take all other tablets 4 hrs apart from your levothyroxine.
Get a good multi vitamin, sleep as much as you need to, make dietary changes and try to get out in the fresh air every day.
Good luck.

dotdotdotmustdash Sat 02-Jul-16 11:32:29

I suffer from Hypothyroidism too, and have done for years. Last year I decided to experiment with a wheat-free diet for a few weeks and it made an enormous difference to the way I felt! I stopped having daytime naps and my energy levels rose dramatically. There was also some welcome weight-loss. I've slipped and am back eating wheat again, but I gearing up to go wheat-free again. It's certainly worth a try - within about 3 days I noticed a difference.

PrimalLass Sat 02-Jul-16 16:52:28

I don't eat wheat either. Apart from the occasional slip up.

dotdotdotmustdash Sat 02-Jul-16 17:42:44

Just take more than they recommend. They won't know. I have been doing this for years. I take 150mg when they recommended 100. My bloods are always normal but I feel better.

Do you get NHS prescriptions? This could be a problem for me as I only get 60 days supply of 100mcg tablets. Taking more than prescribed would lead to me having to ask for scripts way too early.

farmyard3 Sat 02-Jul-16 17:51:17

Thank you for the info about cutting out wheat - never occurred to me! Wouldn't mind losing a bit of weight either.

If you have hypothyroidism, how often do you rest/nap? My GP told me to as much as I need to and to pace myself but my family and friends tell me that being in bed is going to make me more tired?

feesh Sat 02-Jul-16 18:07:21

Your dose isn't high enough, if you feel like you need to nap, you need a higher dose. Simples.

PeppasNanna Sat 02-Jul-16 18:20:26

I'm on 100mg. I feel dreadful. Im actually convinced i could stop taking the Levothyroxine & i would feel no difference!

My Gp gives me 1 months supply of medication so how can you take more?
100mg tablets as well...confused

My body aches. Joint & muscle pains. I can't think propley. My skin is peeling its so dry. My eyebrows hsve almost disappeared. I'm so exhausted but the GP totally dismissed me & told me how I was feeling was due to my family circumstances.

I don't know what to do next...

Stellar67 Sat 02-Jul-16 18:26:48

I take liothyronine after years of struggling. It was like a light was turned on. Had to be seen by a decent endocrinologist to get it though.
Read Stop the Thyroid Madness. Interesting book.

CwtchyQ Sat 02-Jul-16 20:20:25

Can anyone advise about the link between breast cancer and thyroxine? I'm hypo (though I think only a slight case of it - highest my TSH has ever been is 4.5 and I felt pretty normal) and now on 50mcg I sit at 1.2-ish. I've read some frankly scary shit about the link lately and just wanted to see what others thought? I've been on it three years now and am tempted to go off it, but am currently pregnant. Hmmm.

MarkRuffaloCrumble Sat 02-Jul-16 21:25:41

Get hold of a book called Stop the Thyroid Madness. There is lots of info in there about different vitamins etc, tests you should run (you can get them done privately for £50-100 each so will have to start a health care fund, but if you can get to the bottom of it, I'm sure it will be worth it.)

I've been hypo for 16 years, been on Levo for most of that time, but last year tried adding in T3 (bought online from overseas) which helped a little. Now taking NDT (natural dessicated pigs thyroid, which is what people used to take before the invention of Levothyroxine and incidentally is what Hillary Clinton takes for her underactive thyroid!)

I have to take it 3-4 times a day so it is a bit more of a commitment remembering to take it, rather than taking a Levo tablet once a day, but by buying it privately (from Thailand) I can buy and take as many as I need. (We are advised to get private blood tests done periodically to make sure we are on the right track. You can ask your GP but they are sometimes reluctant if you are self-medicating)

There is a strict protocol for dosing correctly so it is important to be well informed before going down that road, but so many people feel like they finally have their life back after starting NDT, it is well worth investing some time and effort (and money!) to get it right.

There are also some good groups on Facebook based on the book so have a search for those too - there are loads of knowledgable people on there willing to share their experiences and wisdom.

Good luck x

RepentAtLeisure Sat 02-Jul-16 21:58:52

I ended up so exhausted on T4 that I couldn't even stand at the sink and wash a plate without feeling like I needed to lie down. My blood test results were always 'perfect'. And it was a vicious cycle as I ended up too knackered to do anything in the end but throw something frozen in the oven and eat junk food for instant energy, which made me very overweight which just made me more tired.

I now order T3 online (the converted form of T4, not everyone can convert it) and I increase or decrease my dose as I see fit. Ideally your Gp should help you explore options, but if not try sites like Health Unlocked. And next time you go in, ask what your results were.

RepentAtLeisure Sat 02-Jul-16 22:06:47

And by the way, make sure you don't take your medication the day of your blood test until afterwards.

BombadierFritz Sat 02-Jul-16 22:26:06

I stopped taking my meds completely and felt a lot better than when i was on them. Still tired but more 'me' and i pace myself. I cant bear getting monthly prescriptions that make me feel ill any more. Probably not a recommended option but i do feel better off meds. Been about a year now

PeppasNanna Sun 03-Jul-16 00:00:54

Right you all are probably going to think I'm thick but what would happen if you stop taking thyroxine?

Seriously I've hardly done a thing all day but I'm aching, feel horrendous & look shocking!

I had no symptoms when i was diagnosed 3 years ago.

RepentAtLeisure Sun 03-Jul-16 10:55:03

PeppasNanna It may be that because you haven't been able to convert the medication and so it hasn't been working for you, your symptoms have got worse? I'm not sure an increase in dosage would help if you haven't been absorbing what you're taking now.

Don't just accept it, you shouldn't have to feel like that. Go back to your GP and ask why if your results are good are your hypo symptoms worse now than when you started the medication. Ideally he/she will let you try another form like NDT or T3 (I know you can get T3 on the NHS) or give you a referral to an endocrinologist who can explore things further.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now