Can anybody shed some light...? (Thyroid)

[teddy275]

Hi all!

So I have recently been diagnosed with an under active thyroid. Completely fits the symptoms I have been experiencing although didn't occur to me until blood test results. I've recently had a tough pregnancy (dd is only 5 months old) so was putting a lot of it down to that, I actually had scans done as we believed it might be more of a gynae issue due to stiffness and swelling in my legs and low abdominal pain.

The scans also showed up gallstones and fatty deposits on my liver.

I was informed of this via a very tricky phone call, I was in the middle of my daughters (very loud and busy) gymnastics class, feeding a baby and dealing with a low battery! I had an awful lot of information thrown at me at once (so much so that I believed I had over-active thyroid for the first few weeks) as my gp was concerned that I needed to get on medication straight away as my levels were so high. She prescribed 100 mg levothyroxine.

I am just finishing my fourth week of this and feel terrible. Literally wanting to sleep 12 hours a night and still feeling awful, not waking for the baby when she stirs, frequent palpitations, hot flushes, sore eyes (although could be hay fever) - white spots in my vision, darkness in one eye when waking in a darkened room, pretty sure my hair is falling out. My legs are the worrying part- I've been experiencing stiffness and pins and needles for a while now but it is worsening to the point that I can't move at times and have to be helped up and down stairs.

I did talk to my gp last week and she has written a new prescription for a 75mg dose- but did say I was experiencing normal symptoms and if I could persevere with the 100 mg then to do so as my levels (?) were dangerously high and needed to come down ASAP. Other than that, nothing on the horizon until a blood test 3 months after diagnosis.

I'm feeling a bit overwhelmed by the stuff on the internet, some of the future implications of an under active thyroid are worrying me immensely. Can anybody give me any indication as to things I can do to help my condition? What should I be doing now even if something as simple as diet/exercise? Would you advise going for the lower dose of levothryroxine? Are these symptoms likely to get better?

I know a proper conversation with the gp is in order but I can't get an appointment for 3 weeks, and she seemed slightly disinterested when I phoned last week about my symptoms worsening (even though I could have been pre-heart attack according to the web and for all I knew... my husband wanted to take me to a&e)

I should add that I did accidentally miss taking one tablet early last week and this seemed to make things a lot worse - are my increased symptoms due to this maybe?

Thanks in advance, really in need of a couple of starting points.

Missing one tablet will make no difference whatsoever, so don’t worry about that – but obviously it is important to take them consistently. Assuming that you are taking it in the morning, do you know to take it away from food, and to have with water only? The Patient Information Leaflet may say 30 minutes before food, many hypo people will advise at least an hour.

You should also not be waiting three months for your next test. You should have blood tests done six weeks after any dose change. Your GP is very wrong by leaving it for so long.

I suffered horrendous palpitations when I first started taking levothyroxine, they took weeks to settle down, but I started on a much lower dose and built up slowly. The palpitations restarted each time I had a dose increase. Even so, my GP did take it seriously and I was checked out. I do still get them, but not as badly as previously. They are scary to experience, you have my sympathy.

However, it is not normal to be as unwell as you are, although it can take time for your body to adjust to getting something it needs so badly, and some people do struggle for a while. Are your symptoms new since starting the levothyroxine, or just the same symptoms you originally had but getting worse? Can I ask what brand of levothyroxine you are taking? There is one brand which is notoriously unpopular with many patients, producing some awful symptoms. Not every brand suits everyone either.

Thanks for the reply, that's all good to know. I will get onto her about the blood tests. I would say most of the symptoms were there to some extent before, I just attributed them to different causes (ie being post partum) they have increased massively though - I experienced palpitations maybe a few times in a three month period, now it's easily 5-6 times a day. They are quite worrying, you're right-especially when you are home alone with a baby!
The brand of levothyroxine is 'Almus'

I do tend to take them well in advance of food as I take them when I get up with the baby around 5ish and I won't usually eat until 7:30 x

I’m pretty sure Almus is the same as Actavis, which is what I take, I get on fine with it. As I said before though, not everyone gets on with every brand. It is advised to stick with the same brand once you find one you are happy with though. Taking yours early morning as you do is fine – I take mine at night as it suits me better.

I actually started feeling a lot worse after my diagnosis, and starting medication, but it wasn’t as soon as your issues – mine took months, and slowly crept up on me. It was an utterly miserable time. It wasn’t helped by having a GP tell me how “easy” it is to treat thyroid disease.

You should definitely get your blood tests done six weeks after starting the levothyroxine though, don’t be fobbed off with three months. It is quite common for us hypos to have problems with low B12, vitamin D, ferritin etc. GPs are not always accommodating when it comes to testing those though. I’ve given up getting help from my GP, and now get mine tested privately (it’s very easy to do, but obviously costs money) and I supplement myself.

Things like your pins and needles could be low B12 – has that been tested? Losing your hair can be iron-related. Actually, lots of symptoms of all of this, and being hypo, can overlap and it’s hard to figure out what it due to what. I just worked my way through things.

Sorry, I hope I don’t sound too negative, I don’t mean to.

I don't get on well with Almus OP. I have to take Activis. I'm VERY sensitive to meds, levo makes me feel rotten but no as rotten as not taking it so it's the lesser of two evils.

I have s lot of the symptoms you describe and my levels are 'normal' now. My antibodies are very high though so I think this is as good as it'll get for me unfortunately.

I too started to feel worse after my diagnosis, then a few weeks of feeling better, back to feeling crappy again.
My understanding of this condition so far is that until the TSH levels get below 2 I will feel like crap. And all the symptoms are down to the condition not the medication.
I was diagnosed a year ago, 6 weekly blood tests all followed by an increase in dose. I am feeling at my worst right now & still find it difficult to figure out what can make me feel better than some days.
My levels are still not right but I just plod on until the next blood test.

I currently take selenium, vit d, b-complex & zinc with my lunch. If I don’t take my supplements I find I crash earlier than my usual 3pm or I will wake up still feeling unrested.
I am toying with the idea of going gluten free, if I eat a lot of gluten 1 day I find I feel worse he next day so I try to avoid it when I can.
My symptoms change week to week but the main ones I get constantly are
Weight gain (I’ve put on 2 stone since September)
Aches & pains all over
Exhaustion
Brain fog.. getting worse.

I have auto-immune hypothyroiditis so I have mine for life.
I believe I was hyper (over active) just after having my DS then it switched to hypo when he turned 1 but I was undiagnosed for 3 years.

I would suggest to your gp that you test after 6 weeks as you’re really struggling with symptoms. Best of luck

When I said that I thought Almus was the same as Actavis, I do mean that they are exactly the same product. Some Actavis levo is packaged under the name Almus by Boots (Almus is a brand name owned by Boots). The Patient Information Leaflet includes the product license number, and it will be the same.

Doctors may tell you that all levothyroxine is “the same”, but they are not. They have different fillers, and may affect us in different ways. Almus and Actavis ARE the same product.

Bit late to thread but place marking to comment on later.

There's a big delay with symptoms; you often have to wait 2-3 months to see how you feel on a certain dose and then potentially adjust. Your thyroid may also still be deteriorating over this year and you may need further adjustments. Aiming for near tsh 1 but it's dependent on an individual. Some need to be much lower to feel well.

You also need to keep a record of your blood tests, always have in the morning before you take your thyroxine.

Don't read too much on the internet; look at (maybe join?) the British thyroid foundation who are really supportive. Good helpline too.

Also get this book:

www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191