Newbie looking for advice

Hi, I'm new here and looking for some advice. I was diagnosed with Hypothyroidism 3 weeks ago after a blood test to see why I was getting numb hands at night that was keeping me awake. My results were:

Serum TSH Level = 100mU/L (0.27-4.20)

Serum free T4 level = 5 pmol/L

I also have some abnormal kidney levels which they're still investigating whereby my creatinine was high at 101 umol/L and total bilirubin level was low at 3 umol/L. I also have a low red blood cell count (RBC) at 3.73 10*12/L. 

All this has come as quite a shock to me, having spent many months, maybe years, thinking fatigue and feeling a little down was down to a demanding job involving lots of travel, feeling cold was just a thing girls did and weight - I've never been skinny but not overweight either, although I did feel if I don't exercise 2/3 times a week I put weight on. 

Since my diagnosis, I've been put on 50mg of Levothyroxine and have been taking it for the last 2 weeks every morning following dr's orders. Since I've started on it though, I feel horrendous. I'm tired all the time, want to nap any chance I get, wake up with numb hands numerous times, have to sleep in jumpers I'm so cold, and have these odd spells lasting up to 5 mins a few times a day where my whole body 'powers down', speech goes slow, and my limbs feel too heavy to lift. My face feels puffy and uncomfortable and I generally don't feel well. 

I know the drugs are meant to take a while to kick in, and I'm due back to the dr's for repeat testing in 3.5 weeks time, but will it get any better?

Also - I am getting married in 8 weeks time! I had been on a strict diet and exercise regime before this diagnosis, and since then I don't have the energy to walk upstairs, let alone the gym. I'm also eating sugar to give myself energy to get through my working day. What if I don't fit into the dress!! 

Is there anything I can eat, take, do to get back to how I was? Any help is very gratefully received.  

10 Replies

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  • Also to add my Lymphocyte count is high too apparently at 3.05 10*9/L - but I don't know what all this means!

  • Welcome to our forum lemonem

    I am sorry you have been diagnosed with hypothyroidism and your TSH is the same as mine was when diagnosed.

    It will take some time for you to feel much better and as we are dealing with hormones everything has to be gradual. After your next blood test you will get an increase of 25mcg and every six weeks thereafter until you feel much better. Make sure your doctor doesn't take too much notice of the TSH as sometimes they stop and tell us that we are in 'normal' range but we need a TSH of 1 or lower to feel well.

    Hypothyroidism is a serious medical condition and when diagnosed we don't pay for any other prescriptions.

    Hopefully you will feel a bit better when you get married in 8 weeks but it usually takes much longer to get to a dose which will help you feel better.

    We have to read and learn if we do want to recover as we've found many doctors are rather ignorant about treating as their guidelines state that the TSH is the main result and some stop treating when it's in range. 

    When you go for a blood test it should be the earliest possible and don't eat before it although you can drink water. Also leave about 24 hours between your last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest and might avoid an unnecessary adjustment in hormones.

    Also ask for B12, Vit D, iron, ferritin and folate. We are usually deficient.

    It's a big learning curve.

  • Thank you for your speedy reply, and your sentiments, its much appreciated. I feel you're right about the doctors - I was told over the phone, the GP spent all of 6 minutes to tell me I had a lifelong disease, oh and there's something wrong with your kidneys. I'll certainly ask for the list you suggest on my next bloods, thank you. Do you recommend anything else at this stage, such as a nutritionist / homeopathy / supplements that might help, or should I wait for that wider blood test results? 

    This feels like the most frustrating illness in the world - just have to sit and wait in the hope these little pills stop making me feel bad and start making me feel good! I've certainly learnt an awful lot from this website in the last week! 

    BTW - if I man-up and try to get back to exercise to get into my wedding dress - other than feeling knackered, do you know if I'll see the symptoms getting worse? I feel quite light headed just climbing stairs right now, so could maybe start off with a long walk every day. I had a plan to lose another half a stone before the big day, determined not to let this dictate my life!

  • Yes, you cannot 'man up' due to the lack of hormones in your body and the thyroid hormones run our metabolism which, with a TSH of 100, will be near the bottom. So you are on a hiding to nothing as you know that if people are overweight they are told to raise their metabolism by exercising whilst dieting. The fact that our metabolism is so low there's no way we can raise it as its too low in the first place we have to raise it gradually to normal before with replacement hormones. 

    There are two main hormones, T4 and T3. T4 is levothyroxine and T3 liothyronine. Levo is inactive and it's job is to convert to T3 - the active hormone. T3 has to get into all of our receptor cells to allow us to function. If we exercise before optimum we reduce the T3 that's necessary for our cells, although we can do gentle exercise, i.e. walking to tolerance or similar.

    You will still look lovely even if you have to have your dress let out a little. The main thing is that your TSH will be dropping so hopefully that will make you feel better too.

  • Welcome Lemonem, you have my deepest sympathy finding this out and starting medication so close to your wedding. I am not as knowledgeable as most of these veterans, there will always be great advice and information on here as you find your way to recovery bit by bit but unfortunately it does take time. But what I would say is just eat well and cut out gluten as much as you can if not altogether for now. Do gentle exercises rather than exercising like mad as that has a counter effect as it stresses out the thyroid gland. Most of all be kind to yourself and try to keep your stress levels low as this also plays havoc with the thyroid. I know it's easier said than done and I wish you a relaxed and wonderful wedding x   p.s walking and yoga are good

  • I hope you can have the extra blood tests suggested by shaws - because the numbness in your fingers could also be due to LOW B12.  So when you have those tests done also ask for the Thyroid anti-bodies to be checked - Anti-TPO and Anti-Tg.  There is Private Testing available through the main website of Thyroid UK ....

    thyroiduk.org.uk/tuk/testin...

    There is a package that contains the FULL thyroid profile and the additional vitamins and minerals.  Turnaround time is really fast too from what I have read .....

    b12deficiency.info/signs-an...

    Scroll down in the above link to find the symptoms of B12D .....  your result needs to be around a 1000 and at 500 as a minimum.  Please do not accept anything from the GP as normal - that is just an opinion and not a result.

    Please do not over exercise - as others have said - you will further deplete the ACTIVE thyroid hormone T3 - which in turn will slow the metabolism even more.  The thyroid has not evolved throughout millions of years - so when we reduce food intake the thyroid thinks there is a famine - so slows down to conserve energy.  This is why when dieting we hit a plateau.

    Hope all goes well - keep posting - keep asking questions ....

  • I am gobsmacked that in all that time no doctor tested you or that you put one foot in front of another you probably have pernicous aneamia too its absolutely appalling 

    Your doctor is wrong to expect levothyroxine to work because without good levels of 

    Ferritin

    Folate

    B12

    Vit d3

    Your body cannot even utilise the levothyroxine t4 and convert it into the T3 that every cell in your body needs to function and thus the levothyroxine is pooling in your body and making you worse not better

    You need the above tested PDQ and supplements for many many months to get them all halfway in their ranges 

    You also need Liothyronine t3 instead of levothyroxine until your levels and body can cope and that simply will not happen quickly

    Its lkely to be more like a year )

    On absolutely no account do you exercise until you are well or the damage to your muscles etc will be horrendous

  • Hi there 

    Kidney problems are probably due to the long term hypothyroidism taking its toll on your kidneys; I had elevated creatine and also liver enzymes off the chart before I was finally diagnosed. As you get up to the right doses hopefully your levels for kidneys will gradually drop and head back into the normal range. 

    Just on the 'when do you start to feel better?' question; they will ramp up your dose slowly every 6 weeks. For me I had moments of feeling better after a few weeks but then tried to do everything I'd been putting off while I'd been ill and crashed a lot. When I got to full dose this continued and I'd say it took about a year and a half to get back to being me. But there was gradual improvement all through the first year and I have a complication which means the standard meds don't suit me. I didn't switch meds until a year on standard meds so my recovery was delayed and most docs I have spoken to say it's a year to get well.

    This is because you store t4 (the ingredient of the med ur on) in our cells with t4 in blood topping it up. If you've been hypo for a while the t4 in cells and organs has been mostly used up. When blood levels if t4 rise again the blood starts replenishing the stores in the vital organs first (brain, heart etc) with others following but it takes some time. My doc compared it to filling up a petrol tank using a teaspoon of petrol every day.it will happen it just takes some time 

    Hopefully your meds will have kicked in sufficiently for you to feel well for your wedding. Don't try to do too much and rest up as this does help. Look at a good multi vit and min to perk you up but watch out for iodine (don't take extra). 

    Good luck

  • Hi, everyone is giving you good advice. Do lots of research, make sure you get those tests and get print outs. Unless you are lucky, most doctors have a simplistic view where it comes to thyroid and B12....

    I used to wake with numb hands, it was B12deficiency. 

    Rest lots before the wedding, try coffee instead of sugar.   I'm sure that all the adrenaline will keep you going for the day  - you just might have to spend the first few days of your honeymoon in bed!!! 😉

  • Hi lemonem, so sorry to hear about the terrible shock you've just had. Doctors are so good at breaking the news, aren't they! Not.

    So, what can you do to help yourself? Well, ditch the diet and the exercise for a start! You need plenty of good nourishment - protein, good fats - olive oïl, butter, nuts, avacados, etc - good carbs, not too much fiber, and Don't skimp on the salt - but good salt, sea salt, not table salt. No processed foods, and cut down on the sugar.

    Your body needs calories at the moment, so Don't try any low-calorie diets! They won't help you lose weight, anyway. Same goes for exercise. Exercise will use up the little hormone that you have and make your condition worse. Just move enough not to rust up, but what you need more than anything is rest.

    Drink plenty of water - especially for you kidneys. That's very important. And, above all, avoid eating any soya. That is the worst possible thing for people with Under-active thyroids.

    Take your levo with a large glass of water, first thing in the morning, and Don't eat or drink anything else for at least an hour. Are you on any other medication? If so, leave at least two hours before taking it.

    You're going to have a whole heap of questions over the next few months - there's a lot to learn and your doctor hasn't learnt any of it! - so Don't hesitate to ask your questions on here. There will always be someone to reply to you. :) 

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