Feel so bad - want to stop treatment. help!

Hormones
1

I've only gone through depression once before in my life when I had a miscarriage, and it lasted 2mths. I hate waking up feeling like everything is flat, I hate that I've put on 3kg in a couple of months, I hate the way I constantly feel hungry - when normally when I feel bad - I can't eat,  I hate feeling like a tired old woman all the time - after doing a small bit of housework I need to lay down, I hate being on sick leave from work as it makes me feel completely disfunctional, I can't stand feeling irritable all the time as if its 'that time of the month', I find it hard to be around my wonderful 3 small kids and don't know what to do with that thought as they are my light and fill my heart, the increase in tinnitis is driving me nuts but I've read its linked to depression so what to do with that?!, my face is covered in acne even though I've never had many spots even as a teen (stopped levo for approx 6 days and all spots cleared after 2 days), I realllllllllllly hate that my dr only listens if I ask questions as if I don't know anything and responds better if he feels he has all the knowledge, I even more hate that my endo pushes me to ask my questions but then shuts me down with responses like 'the adrenal system is not connected to the thyroid', and the worst is that I blame levo but it may be the hypothyroidism. This sucks. And talking about it makes me feel even more disfunctional because nobody understands.

What can I do? The only thing I can think of at this point in time is to ask my dr to change me to levo drops (I'm told there is no other treatment here besides Liothyronine which would be harder on my heart - my heart is fine but levo is creating havoc with it) - at least the levo drops I could adjust more easily than chopping pills.

What

can

I

do?

2

I'm so sorry that you're feeling so awful Mary. You're wrong though - many people on this forum understand exactly how you are feeling and empathise completely with you, experiencing some or all of the things that you are.  So please don't feel that you are alone.  

Even with treatment, thyroid disease can still make us feel like crap - and never 100% well.  Others here are far more qualified than I am to give you advice and suggestions about what you can do to improve things for yourself and I am sure they will respond soon.  In the meantime, hang on in there - and just know that you can always sound off on here or ask questions, and there will always be someone who can reach out to you, while understanding perfectly what you are going through.    

3

Thank you for that. x

4

You are not alone...please dont be to hard on yourself,im having a dreadful week,were all out here and we care!!!!

5

That's the thing - I don't think I'm hard on myself. I feel bad. It's not ok. Is it thyroid or the meds? Nobody can answer me this. Frustrating as you have to question and second guess your dr. It does help to know I'm not alone... wish we could actually meet up to share.  All other bad things in life do pass or heal/grief lessens with time...but with hypothyroid and finding the right treatment? It's shocking it's taking so long for so many of us - and the most shocking is that dr's and endo's do not HEAR us.

Thank you for responding. It does help - alot. x

6

Mary there just isn't always a simple single reason when it comes to this problem. It could be the medicine you are on.  It could be the fact that you are taking it too close to food, coffee or tea, thyroid binding supplements, etc.  It could be the fillers in whatever medicine you are given.  You could have thyroid antibodies preventing your body from using what you are faithfully taking to feel better. It's crazy hard to pin it down, but many have figured it out. Please don't give up.  Change doctors ... Get a second and third opinion. Become a hypothyroid student. Most of us wind up knowing as much as our doctors know. So sorry. 

7

Hello Mary

Nurse Shelly here, andI understand how you feel.  From  1987 to 2009 I must have tried every medication ever made for the thyroid.

There are others but sadly not at NHS as they have a limited Formulary and will only buy Levo and Liothyronine. These are licensed meds and a pig can't be licensed.  In the USA we can get any med as we carry medical insurance for it.

Many on here take the Naturals such as Thyroid S and Nature's Thyroid and ThyroGold and Armour thyroid.  These meds are very close to our human thyroid and are made from our friend the PIG.  Many ladies on here have to buy it on their own via online sources.  I think it is wrong that NHS has such a narrow formualry and will not prescibe these due to licensing rules.

Sometimes you have to do what is best for you. Levo did nothing for me, and I thought back in 1987, I was an odd one out.  Now I see and hear about others having the same thing I did all those years ago.

I will PM you a source that you can check out.

In the meantime, do not give up, each of us is different and what works on others will not work on you and we have to take charge of our health care.

Any questions just ask,

Shelly

 

8

Hi Mary sorry to hear you are feeling so bad. I find when my levels are low are feel really down, it can be linked to thyroid. Out of curiosity what are levo drops? I have never heard of them. I think you are right, if your heart is quite lively with levothyroxine then liothyonine is likely to be a lot worse (I found the same and had to come off liothyonine).

As shelly said, NDT is another option which can be prescribed by a private endocrinologist. Problem is doctors have often never heard of it. I feel your pain it is a constant struggle sometimes x

9

My dr mentioned that levo comes in drop format too. No idea if this was from years ago when levo first arrived on the scene or whether they still exist. Going to try at least.

 

10

Thank you all for your replies. The support does make it easier. x

11

Hi Mary, you are not alone and most of us with thyroid disfunction have felt like you and some of us never get any better. I have been on levothyroxin for 20 years following an RTA that killed my thyroid. For 18 of those years my dose was 100mg daily but for the about 12 months I started feeling off, like you tired all of the time, aching body, weak limbs, I had no appetite yet I was gaining weight like fun much worse than I had 18 years before. I was so depressed I just wanted to die so I stopped taking the levothyroxin and after about four weeks I started feeling a bit better, more alive and in less pain but a further four weeks down the line I started feeling like sh*t again not helped by the fact that I had been bitten first by a tic and then by a spider! I had to go to the Dr because of the spider bit reaction and he asked my why I was no longer picking up my levothyroxin prescription so I told him  I had stopped taking it and why. He did full bloods and suggested I went back onto levothyroxin but at a much lower dose and built it up gradual. He also told me it should be taken first thing in the morning on an empty stomach and with no other medication including vitamins and health food products. Apparently levothyroxin is unable to do its job when fighting with other chemicals or foods so no eating within an hour at least of taking the levo. I am now on 75mg and everything is fine and I feel better than I have in years so it might well be that you are on a too high or too low a dose or you are taking it with food or drink - water is the only substance levo can tollerate and still function. I hope this has helped, all the best

sue

12

Mary, unfortunatly you can't rely on your GP or any other medical person to help as they are not interested as long as your bloodwork is fine then they see it as job done. I have had an under active thyroid for 8 years and have done some research an here's what helps me:-

1. Get plenty of sunlight every day. Our bodies make vitamin D3 in the skin following exposure. People who are overweight are usually low on vitamin D3. D3 helps the thyroid. D3 from sunlight is the best kind. D3 supplements are not as good. Don't believe the medical profession when they say sunlight is bad for you just cover up when you have had your desired sun exposure.

2. Iodine. It is part raw material for thyroid hormone. Buy a bottle of liquid iodine and paint a little on your skin every day with a cotton bud. It helps in so many ways. It is good for the eyesight and ears they both work better when iodine is sufficient in the body.

3. Selenium a co nutrient with iodine. Iodine should be taken with selenium. Take in supplement form. Brazil nuts are a natural form though not all Brazil nuts have the right quantity of selenium due to it being insufficient in the soil where they are grown.

4. Magnesium - I take a supplement though you can make your own magnesium oil and apply it to the skin daily. One cup of magnesium flakes with one cup pure water wait for it to dissolve and put in a spray bottle and spray skin every day.

5 - Green leafy vegetables. Eat either eat raw or cooked with a little olive oil and a squeeze of Lemon juice.

6 - Vitamin C. This helps to convert T4 into the active T3 hormone. I always have more enery when I remember to take 500 mg of vitamin C twice a day.

7 - Coconut oil. Yes really! It support the thyroid and helps with weight loss. Try to get raw unprocessed coconut oil. Take 1-3 tablespoons a day. Stir in yogurt if you prefer.

8. Avoid refined carbohydrates like the plague! They are not food at all. It is impossible to loose weight if you are eating bread, refined cereal , pasta, pizza and sweets. These trigger the body to produce more insulin, the body triggers the cells to store the calories as fat.

9 - Avoid using harmful chemicals to clean your home. Use vinegar and bicarbonate of soda for most cleaning jobs. Bleach, ammonia and other chemical are extremely harmful to the thyroid.

10 - Simplify your personal care supplies to further reduce your toxic exposures.throw away the fluoridated toothpaste and brush with bicarbonate of soda. A solution of bicarbonate of soda also makes a good dental rinse (one teaspoon in a tumbler of water). Buy soap in its purest form. Try to find shampoos without SLS or parapens ( carcinogens). If you have dry skin or hair try coconut oil. Don't put anything on your skin you wouldn't eat.

Hope this helps.

Pat

13

I've been on 150mg for about eight years and was told recently by an endo that I was probably on way too much. I gradually dropped down to 50mg and started feeling an improvement in my symptoms. I wonder how many others are being over-medicated