Frustrated and struggling with hypothyroidism

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Hi everyone. I'm 26 and was diagnosed with hypothyroidism in September 2012. I had been off work for 4 months with diagnosed "depression". It wasn't until I went to a different GP and told her about fatigue, weight gain, skin problems, that she recommended a thyroid test. It turned out the depression was caused by hypothyroidism. Every other GP in my practice had put all this down to an unhealthy lifestyle because I was too depressed to care about keeping myself healthy.

I was put on 50mg of levothyroxine and was told "not to beat myself up" about the weight gain but not expect to be able to lose weight until some time after Christmas when the medication started to work. My sister in law was a medical student and was very excited for me and told me the weight would fall off on the new medication. I have never been overweight in my life. I always had a good figure and was able to enjoy nice clothes. If I ever put on a lb or two I could pull it back by watching what I ate for a week or two and it would fall off again. Things I used to do to lose weight a few years ago no longer work (obviously). I don't need a lecture about healthy eating and exercise from a doctor, I know the fundamentals of a healthy lifestyle having lead one up until I was 24! After my diagnosis I hired a personal trainer at my gym and kept a food diary. After 6 weeks I had put on 2lbs! My PT was stunned! This was supposed to be a tailor made, guaranteed weight loss training regime. He said I must have been cheating and not recording it in my food diary. Yes, maybe I had the odd glass of wine now and then that I omitted but nothing in excess.

The thyroxine has not worked. If anything it made my symptoms worse. Even worse fatigue, thinning hair, flaky scalp and skin, weight gain (again!). I started to worry that I didn't have an underactive thyroid at all but my blood tests keep coming back saying I'm on the right dosage. So I'm at a total loss!

More recently I've had AWFUL, unbearable PMS and heavy, irregular periods. I don't know if this is related, but I'm inclined to think it is. I've also had terrible numbing sensation and severe pins and needles in my hands at various points throughout the day. Anyone else had this?

At this point I have completely stopped taking thyroxine. I know this is bad, but I have got so frustrated with the meds that I could take it no longer. I have a family member who also has an underactive thyroid and is now very obese. I am terrified I will end up like this if things keep on the way they are. My friends are all lovely and slim and can wear whatever they want. They talk about diets and exercise classes that they are doing but I have become so disillusioned I just tune it out. They all forget that I have this problem where it is virtually impossible for me to lose weight, and I'm pretty sure they just think I'm fat and lazy. I would live in the gym if I thought it would work, even slightly. I feel embarrassed when I run into people I haven't seen in years, I know they just think I have let myself go. I feel like walking around wearing a sign around my neck saying I'm fat now because of my thyroid!

Does anyone have any advice about combating symptoms? I've made an appointment with a GP in my practice who has been very good to me in the past and actually listens to what I'm saying. I feel like it's me against the blood test results. I can talk about symptoms and useless medications until I'm blue in the face but if my TSH levels reflect that I'm on the right meds, what can I do?

Any and all advice is more than welcome. I am the only person in my immediate family with this problem and I'm sure they all think I'm making excuses for my weight gain, despite knowing about my thyroid issues. No one fully understands so I feel like there is no one to talk to about this.

Thanks everyone!

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  • Posted

    Hey Sarah,

    I fully understand how you are feeling..

    I have put a few things on this site about my struggle with my medication.

    I feel rubbish all the time, I'm starving hungry, so low and I get really bad hot flushes.

    My meds have been changed and gone up and down since diagnoised in December 2013.

    I am currently on weight watchers and feels impossible to stick to it and only loosing tiny amounts if any at all.

    I find it hard that others don't fully understand this struggle!

    hope you feel better really soon x

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    • Posted

      I agree, I was always hungry when taking thyroxine! It was awful! I don't feel as hungry since I stopped taking it but I don't think it's good to not be taking anything at all. I've basically done every diet in the book. I used to stick to WW when I was younger if I needed to lose a few lbs here and there but it does not work for me anymore. My mum does a lot of diets and is always trying to gently encourage me to try them along with her, it is infuriating because she forgets that it's not as easy for me as it used to be. 

      It's tough! Thanks for your well wishes! 

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  • Posted

    Hi Sarah,

    I felt I needed to reply to your message as I am 27 years old and have been diagnosed two years ago with hypothyroidism. Nobody understands my struggle especially the doctors. I had to change doctors because they were not very understanding at all. One doctor told me to go read a book in how to manage my mind. I feel very alone with this problem also. I haven't put on weight though which I cannot understand but I am so exhausted that it is a struggle to get through the day. Like you I came off the tablets as Doctor kept increasing my dosage every few months as I was growing immune to the lower dosages. I felt anxious on the meds and pains down my arms. I have a four year old boy and I am only after finding out Im pregnant again so it also concerns me that I am not on the meds anymore. I was wondering would anybody give me good advice on this. I have been depressed like yourself over this as Im unable to go out on a night out or enjoy myself! I would have great advice to give you Sarah but I'm on iron tablets and I'm thinking of getting the vit b injection once a week. I personally came off them because of the side effects and the fact the effect of the meds wore off after few months. It would be great if you do find done useful information to share it with me as I would be really grateful. Thanks and wishing you well

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    • Posted

      Hi Kate, 

      I'm sorry to hear you've had such a horrible time. It might be a good idea to discuss some kind of thyroid med during your pregnancy because I've read that it's important. For a while I had such deep anxiety I stopped going out on nights out and sometimes I'd be ready to go out and flake at the last minute. I'm lucky, I have a great boyfriend who gave me a lot of love and support and got me back out there smile Having some fun and going out with friends was a big help, it got my mind off my anxieties about going out in public and it made a huge difference. 

      Have a look at the pages Pippa has suggested below. They seem to be good! 

      Good luck and I hope things pick up for you!

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    • Posted

      Hi Kate, I'm sorry your going through this. Let me start by saying please get back on your thyroid medication if your pregnant. You don't want any unnecessary complications. I suffer from. Congenital Hypothyroidism, meaning I was born with a very low regulating thyroid, I was blessed that the doctors caught it before any damage started to take place. Ive always maintained my weight and sluggish symptoms, cold hands and feet, lethargy, irritability, depression and anxiety, just to name the most known symptoms, but it really took a turn for the worst after my daughter was born. During my pregnancy I was put on a high dose of Levothyroxine 200mcg, I gained a crazy amount of weight, had ultrasounds and sonagrams done twice weekly the last 2 months of my pregnancy. I had a NICU stationed in my delivery room to check my daughter, fortunately my baby girls thyroid is fine. But through the years my thyroid has taken a toll, I feel crazy, and recently requested a refferal to an endocrinologist from my GP. We did the lab results which she said were normal?! Normal?! So I requested to switch from Levothyroxine to Armour. It's my second day out of brain fog, but I know this is the beginning. I really recommend that you don't play devils advocate with your thyroid. Maybe see if you can get copy of your labs, request to switch to another medication, I heard Naturethroid has been helpful to other over the lab synthetic Synthroid/Levoxyll/Levothyroxine. I personally did well on Levoxyll pre partum, but since bodies change into the thirties I am willing to make changes as well. Not all medication is a one size fits all, remember that. Plrase, please when you feel discouraged reach out, we all are here to help or give insight into the crazy life of Hypothyroidism. Don't give up, on yourself, your unborn or your little one, it's a very difficult journey but you will come out stronger and healthier. Take care and God bless!

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  • Posted

    Hi, I recognise everything you have said, and totally empathise.

    A couple of things;

    Can I ask, what are your TSH levels (or is your doc doing the normal thing of not telling you, but fobbing you off with the 'in the normal range' line?) If this is the case, ask for your results, and if they try telling you that they can't give you them, hear the alarm bells! This is totally untrue, we are all allowed to know what is in our notes by law.

    If however you do have them, could you post them here and we may be able to advise.

    If you are UK, can I recommend the Thyroid UK facebook group, which is brilliant, friendly, supportive, and members fall over themselves to answer any questions you may have. Also it's 'bigger sister' group, Hypothyroidism, which is  a global group, (in the English language) which will give you invaluable info on how the condition fares across the world, and the options, research etc; abroad.

    Also the 'Thyroid UK' website, is a brilliant website and charity, run by and for the sufferers of this awful condition and will give you a wealth of info aswell.

    50 mcg is a low dose, and you may well do better on a higher one. Have you asked about this? I am on 175mcg, and that seems to help me quite well.

    If you are taking your meds in the morning, you could also try taking them just before bedtime, this should be done at least 1-2 hours after you have last eaten, and the same time at least after anything with calcium, (ie, milk, cheese, yogurt, etc). Calcium and a full tummy interferes with absorption of the med. xxx

     

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    • Posted

      Hi Pippa, 

      Thanks for your helpful advice. I was always given the "normal range" answer but I called up today and asked for the specifics. My last blood test was in February and it was TSH 2.37 and T4 11.4. I have absolutely no idea what this means. From the little bit of research I've done, I don't think it's anything too excessive which probably explains the low dosage. I've never asked for a higher dosage because I've always assumed that doctors would be doing the right thing. 

      I've read somewhere about Vitamin D deficiency. This can contribute to the symptoms?

      Like I said, I'm going for an appointment next week to discuss all my concerns. It's only been since I started doing internet research recently that I've discovered the problems with thyroid meds. Hopefully I'll get something that works for me.

      Thanks again!

      Sarah   

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    • Posted

      Hi Sarah.

      Tsh 2.37 is .....I'm sorry to say this.....in the normal range!

      However, many sufferers do feel much better the closer to 0 that they are, either side, it all depends on the person.

      Also, it may well be worth asking your doc to test your T3, which is the ACTIVE hormone after your T4 has been converted. Some folk have trouble with their T4 conversion, which means although the blood tests for TSH and T4 look correct, their thyroxine is not getting into the system, and so symptoms are not being treated.

      You may find your doc is reticent to do this test however, as it is not on the NHS normal test list, as it costs, not a lot, but still more than they wish to do.

      Get reading! The more you know, the better your argument and grounds to get what you need.

      Good luck sweetheart. xxxx

       

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  • Posted

    Hi Sarah,

    Thank you for your reply. It's great to know other people are going through the same thing. It's very much a silent illness and people don't realise how bad it actually is. I will look into the medicine again, I just feel that the doctors don't know a whole lot either which is very frustrating. I hope you get done answers aswell

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  • Posted

    Hi sarah. Just read this post and it sounds like my situation. just wondered how you got on at the docs and how your symptoms are ? Thanks
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  • Posted

    I searched "thyroid medication starvation side effects" and found this site. I have Hashimoto's Thyroiditis but have been controlling it with diet for the last four years. I was hoping a low-dose porcine thyroid would help the low-level fatigue and weight gain, but all my symptoms have become worse. The new side effect of these drugs is feeling like I'm starving although I'm not hungry. I overeat nearly to the point of vomiting and I still feel ravenous. My doctor just looks at me like I'm crazy and gives me dieting advice which is ridiculous. My theory is these drugs suppress your thyroid requiring a higher dosage and each dosage increase suppresses it more and more causing more symptoms. I assume this protocol works with some people, but obviously for those of us on this site it's failing. I've stopped taking the drugs as I don't see this as a solution. I don't want to feel worse nor be required to raise the dose all the time just to maintain.

    I am also wondering what happened with Sarah and what her doctor said? There must be answers out there if we are all experiencing the same side effects. Or not. I have found there are so few answers for any health issue these days I've learned not to get my hopes up.

    If anyone has any answers, I'd appreciate it so I can get an idea of where to go from here.

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  • Posted

    Hi Sarah I'm 13 and I have the exact same problems I was diagnosed with hypothyroid 3 years ago and I'm on level thyroxine the doctor said it would help my metabolism speed up and I would lose wait but ever since then I haven't in fact I gain more wait I'm in middle school and slightly over wait and you probably know how that is I get bullied a lot and I have symptoms of dry scalp losing hair  slow and tired cold mostly all the time and I've been forgetting to take my medicine a lot and I want to just be skinny I wanna be a professional dancer and share clothes with my friends and such so I understand a lot how you feel and Ive tried so many diets and workout plans and nothing works
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  • Posted

    Hi Sarah

    I understand your confusion.  I have just this past two months finally had blood tests to confirm what was causing my fatigue, heavy irregular periods and dry skin flare ups on my face.  It was noted my TSH level was 5, and TPO antibodies through the roof at 966.  free T4 was 11.2.  Subclinical hypothyroid they said, would I like some thyroxin?  My medical father was diagnosed with Hashimotos hypothyroidism age 73 ten years ago - so everyone chanted - JUST TAKE THE PILL! ITs nothing - celebrate! you'll be fine its the best disease you can get!!!!

    I wasn't so easily persuaded so set about learning about the problem and what could be causing it.  Before I take medication for life I want to be FULLY informed.  The GP didn't have any other answers.. 'what about healing naturally I asked'?  "You could"she said "try" but I doubt it will work, only a miracle. .... Nice one I thought.  

    I spent the following four weeks studying and scouring the web for answers, downloading various people's protocols and wellness plans and taking notes... I went back to the GP for various blood tests, which took weeks as in each case I had to get the Nurse to ask the GP and the GP to authorise it .. so we kept going round in circles as they didn't want to test cortisol for adrenal function, finally we got that, the sex hormones done, the vitamin D, B12 and ferratin.  Turns out most of them inc oestrogen was way out of whack.  This builds a true picture of underlying causes.  I am also awaiting for Candida and heavy metal tests to be done on blood.  Again they are stalling, no referal to an endochronologist or anything - just the offer of a pill - essentially a band aid to the problem.

    Incredible.

    Finally (and to my doctor father's irritation!) I have the keys.  High estrogen levels were dampening progesterone, a slow adrenal function and low vit D and iron levels all making the thyroid function impossible.  Thyroid binding globulin TGB is created with estrogen.  This binds as a carrier the thyroid hormone round the body but it is inactive when it is bound, so there's too many cars and not enough pedestrians if you follow!  Coupled with low adrenal which also affects thyroid production and visa versa leads to a vicious cycle.  Coupled with liver probably toxic and gut inflammation you have a serious stew of situations which will cause hypothyroidism.  

    Now if I took the meds, it may suppliment the low thyroid production and temporarily releive some symptoms, but in many cases as I beleive would be in mine, the underlying problems would be the same.  The best start would be stop ANY gluten, soy, dairy and processed/packaged foods, household chemicals, birth control pills (if you are on them) and tap water.  Drink pure water, distilled if you can and eat whole organic foods and introduce suppliments like selennium, zinc, magnesium, thyrocin, probiotic for gut health and L Glutemine, avoid goitrogenic foods like uncooked spinich, brocolli and spinach, cabbage and look up online good thyroid diets.  Avoid and reduce stress and make sure oxygenation through exercise is taking place - just gentle exercise 20-40 mins a day each day - like a positive walk.  REmove alcohol, coffee and high sugar foods, peanuts and keep to fresh juicing, organic smoothies, flax oil/seeds, chia seeds and so forth. There is a separate regimine for adrenal function and repair too.

    This all sounds like a lot to take in, but I think if we combine medical advice (where you feel its needed) to balance hormones and take all the dietary and lifestyle changes needed and get the bloods done every 2 months you will find a really positive improvement.  Its too early for me to swear by this, but I have faith that it will help, a lot.  There is nothing worse than being juggled medication, with no answers for the miserable making symptoms and gradually shutting down your body's natural gladular system.  If the HPA (hypothalmus pituitary adrenal axis is off) this will be a cycle of collapse of the endocrine system, which is also compounded by poor aggravating diet and leaky intestinal wall.

    Hope we all find it within ourselves to reseach beyond the Dr's advice.  I am astonished at just how little they seem to know about real holistic health - they seem to focus on a linear type of medicine that really doesn't get to the bottom of things.  I can say this also as I spent 4 years suffering wrong diagnosis from my son's ill health from birth to 4 years with chronic obstructive sleep aponea and loads of sypmtoms that were actually aggravated by poor medical direction.... astonishing.  I demanded a CAT scan after I could cope no longer with no sleep for so long and they realised suddenly he needed his adenoids and tonsils removed as due to poor direction by them they had swollen to obstruct his airway.  Again, incredible.  They removed his adenoids and tonsils and for the first time since 1 week old he could breathe again.  Not to mention the naso-gastric tubes they scarred the inside of his nose with when inserting badly - which casued kiloid scarring and narrowing airway - (further compounded by casein intollerance through early years).  There's another book there for sure.

    Hope all of you find the courage to research and challenge the medics where relevant and empower yourselves with the knowledge you need to to take charge of your health.  They don't always have the answers.!

    smile 

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  • Posted

    Hi Sarah 81087 I wondered how you were getting on. I'm hypothyroid for the past 15 years. I didnt put on weight at first. I hardly even had symptoms it was just a routine check. I'm now 40 and suffer with most symptoms even though im normal in tests. My weight has been up and down over the years, weight watchers worked 8 years ago but not now. If i eat 3 meals a day i put on weight. Im nearly 13 stone which is funny because at 25 years old I thought I put on weight after my 1st child and thought 10 stone was heavy!

    Anyway my advice is do not stop your medication. I have researched so much on this disorder and the thyroid controls every function of the body, muscles, vitamin absorption everything and stopping your medication will destroy parts of your body and you will not notice for years.

    I hope your struggle improves. Healthy lifestyle does help imagine how much worse it would get if you gave up.

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  • Posted

    I am replying to Sarah and in agreement with "Frustrated and Struggling with Hypothyroidism".

    A retired nurse and a patient with a struggle with hypothyroidism and a string of Doctors that would not listen to what I had to say. I have been on everything there is for the condition, and recently have been put on Tyrosint, which is in gel form of levothyroxine sodium withno fillers, no gluten, and easier to absorb. 

    My issue is an exhausted adrenal system and a malabsorbtion problem. I believe my D3 is still too low. I am taking sublingual D3. I am disabled and do not get out often. Have been stuck taking the cheaper meds due to finances, and this is interferring with my life in a major way. 

    I did try a nutritionist and a homeopathic physician who did put me on many whole food supplements and many appointments a month. I went on the diet this gentleman was speaking of. I found out all of the kale I was eating and the wonderful green drinks I was eating raw were ALL WRONG for the thyroid. We should be staying away from all cruciferous vegatables. No dairy, no sugar, no wheat, and no gluten. Yes it did help a lot. But it would be a constant expense of which I do not have, so back to the Doctors I went as Medicare will pay for only the governments idea of what is best. It is truly the cheapest and definately NOT the best. 

    What happens with me and medications....they work initially, and then they build up in my system and begin to show the worst side effects. One cannot live with exhaustion, sleeping all day, tremors, increased heart rate, headaches, insomnia. Lets not forget the extreme hair loss, dry skin and the weight gain. I have gone from 158 at 5'8in to 195 in a very short time. I was always thin. At 50 I was 129 lb. energetic and going swing dancing twice and week when i wasn't kayaking. I was working out and looking much younger then. But then.....in 1997 when my Mom left us, my thryoid went into overdrive, and didn't want to function properly. 

    This tyrosint is over 100.00 for 29 pills and it is not covered by any insurance that I know of, nor covered by medicare either. I am on 54 pills a month and I cannot afford the med. Called every service there was, even the company...no help. The synthroid makes me sick, and the Armour Thyroid my heart does not like. SO>>>>>>  Back to the drawing board. My Endocrinologist is great but he only knows what he routinely does and the drugs he prefers to use. He has tried everything and frankly he probably doesnlt know what else to do for me at this point. So, I can relate to your situation. I am sleeping all day and up all night. I cannot get anything done without being short of breath, and sweating profusely. Went to have blood drawn, levels are off, and the Dr said that my T4 free was in the toilet. That was what he said.  

    The phlebotomist said that I had to drink more water. I drink two gallons a day, I am sure it is due to increased sweating, which is so emabarassing I don't want to go out most of the time. Not to mention needing to be near a bathroom from the typrosint. So, if any of you have any ideas....I am listening. It seems there is no other road to take. When I went off of everything I developed goiter and nodules and nearly lost my thyroid. I only went off of them because of the intense side effects. My nurses at the office said I was impatent and to stay on the drug. Yet I know that the side effects I was having were dangerous. He switched me on my next appointment to Armour Thyroid which is natural dessicated pork. Sounds gross doesn't it? Well if you are Jewish you wouldn't be able to take that as they don't eat pork. Well thanks for listening. 

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    • Posted

      Hi lee83829

       I also am a fellow nurse. I wanted to give you a tip on the Tirosint.  Look online for a coupon.  I can get mine for $35.  Hope this helps!

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