Post # 1
I am 20 years old, and have known I have a disease called Hashimotos Thyroiditis for about 2 years now, however my levels were up and down by small amounts, and then regulated themselves. I was told to have annual testing to monitor them as given my age it would be extremely unlikely for anything to happen.
I had a test done in February, which returned a TSH level of 1.7 (0.5-4.0 normal in Australia) and a Free T4 of 15.6 (10.0 – 21.0 normal in Australia).
Those levels were pretty spot on!
It is now June, and I saw a Gynocologist last week and THANKFULLY she sent me for a blood test which included my thyroid levels, which resulted in an elevated Prolactin level, a Free T4 of 3.5 (10.0 – 21.0 normal in Australia) and a TSH of 68 (0.5-4.0 normal in Australia).
I received a call from her when she got the results and had to see my GP the next morning, who started me on 100mgs daily of Thyroxine. I started this 5 days ago.
I also have a pretty large Goitre I have to have an ultrasound on in the next 2 weeks.
Just wondering if anyone has any advice or stories to share in relation to thyroid problems, medications or symptoms (disappearing)?
I have been lucky to not gain a large amount of weight, however I would like to lose 10 kilos before my wedding. Did anyone find the weight easy or hard to move once on medication? I know that I could never budge a kilo before..
Post # 3
I’ve had graves disease for 12 years, i am 24 now. If you have any questions i would do my best to help you. I had a total thyroidectomy in 2009.
Post # 4
@MrsHoneyC: Oh really? It seems to be more and more common for younger people these days. Did you have an enlarged Thyroid?
Post # 5
@Kriddlelouise: I have the exact same condition as you! My gyno started feeling around my neck and went and had me get my bloodwork done. I am on 50 with my thyroxine (I think mine is called Levothyroxine… generic Synthroid).
I would talk to your doctor about losing weight. Some people actually GAIN weight on their thyroid pills, and losing weight with hypothyroidism is more difficult than losing weight without it (like it was easy before, right?)
Anyway, if you have any question I am here for you!
Post # 6
@Kriddlelouise: I’m 32 weeks pregnant. I’ve been telling doctors for about 5 years that my 110 lbs weight gain in 4 months and the lump in my neck meant something was wrong with my thyroid. Year after year, they told me I was fine.
In March and April, I finally got an ultrasound, then a biopsy, then a total thyroidectomy, then a cancer diagnosis (in both sides of my thyroid — papillary, which also affected my lymph nodes).
I’m on 175 mcg of synthroid and feel pretty wretched. I’m new to this, so I don’t know what to do or where to go. It’s very frustrating.
Post # 7
I was diagnosed with thyroid cancer at the age of 20 after in hindsight about 4 years oflow thyroid levels. I had a total hyroidectomy in 2004 and have been cancer free for coming up on 9 years this January. I have bloodwork done every year to monitor and ultrasounds plus specia bloodtests with shots every other years. I take 200 micrograms of Synthroid daily and have been on this dose for the entire 9 years. My endocrinologist says that I should have no trouble having a baby and will just need to see him for monitoring in addition to my OB/GYN as thyroid hormone will need to be adjusted with medication since my body can’t do it on its own.
My weight has stayed steady the entire time I’ve been medicated, even as I approach 30. I don’t feel like my metabolism has slowed at all. I don’t diet so I have not ever tried to lose weight since the cancer but I will say that while I was hypo before my diagnosis, I couldn’t lose weight if my life depended on it. So fun for my 17 year old self who’d never had a weight problem before that. So much fun for a self conscious teenager who suddenly gained 15 pounds and was huge compared to my other ballet friends.
Best advice I have is to find a doctor that you trust and listens to your symptoms when taking doses into account. So many doctor’s rely only on your numbers and if you’re still feeling crappy, they won’t up your dose. My endocrinologist is fabulous and I have no complaints.
Best of luck!
oh yeah. The thyroidectomy wasn’t nearly as bad as I feared it would be. I was back in class about a week after my surgery since I had it over the long thanksgiving weekend. I didn’t feel up to driving until about two weeks post-op but there was very little pain, at least for me.
Post # 8
I’m starting Hashimoto’s, my mother and grandmother both have it. Grandma developed it in her 60’s, my mother in her early 30’s. I lost a significant amount of weight between february and march so I suspected I was in the hyperthyroid part of the disease. By the time I finally got around to getting tested my levels were of TSH 7.4 and free T4 was borderline (don’t remember exactly how much). However since neither of the two were completely terrible I didn’t get treatment, but have to go back in August to get tested again to check. I don’t have a goiter yet, since it is still in the beginning stages, hopefully, since it will be caught in time, I won’t develop one. I’m 20 as well. Once you’re on meds losing the weight is ‘normal’ in terms of dificulty, it shouldnt be harder or easier than for a regular person, since that’s the point of the meds, to normalize the levels.
Post # 9
I am worried by ultrasound will show something wrong – it seems to be getting larger by the day since i found out though it could be mind over matter. Did things happen fast with your thyroidectomy?
Have you ladies experienced any luck with weight loss at all? I mentioned it to my doctor and she said I should have an easier time losing weight now that i will be on medication.
To be fair, I think my thyroid was in the overactive stage for most of my pubescent years, and I was very skinny. I then gained 20 kilos in 8 months and that has changed my body forever due to being so young and gained such a large amount in a short time frame.
I have tried and failed at losing weight before, and with no energy and no results I gave in and I shockingly live mostly off Junk Food
I do consider myself lucky to only weigh 149 pounds, however I would defiately like to lose some. I am aware stopping with the junk food will no doubt mean weight loss, but then again it has never been like that before. I am a bit confused, but I am endevouring to change my eating habits to fuel my body with good foods.
I appreciate everyones willingness to help, and I hope that in due course I can provide knowledge to others on such a confusing and dangerous health issue.
Post # 10
I had my ultrasound in March and had a biopsy the last week of March and my thyroidectomy on April 2. It moved fast.
I will be honest… I lost about half of that weight I gained last year when I did kickboxing and zumba every day and kept my calories super low. It takes a lot more for me to lose weight than the average person, it seems. But I’m very hypothyroid, even medicated now. That’s probably part of the problem.
Post # 11
@stuckinwonderland: wow that is very fast! It would hardly allow time to process what was happening.
Oh – I wonder why so many eople have problems with the medication?! Why cant they give you what makes your levels normal? Or is that because normal is different for everyone?
Post # 12
@Kriddlelouise: The medications are ridiculous. In my case, my T3 levels are high but my T4 is low, so I have hypothyroid symptoms AND crazy anxiety. If I up my synthroid to help my T4 levels, the anxiety will get worse and I’m already medicating it even though I’m pregnant.
It’s just such a cluster****. I didn’t have a chance to even ask questions. I’m supposed to have treatment for the cancer after delivery, too, but I haven’t decided if I will.
Post # 13
@stuckinwonderland: Oh it would be so much harder being pregnant – there are things that will have to wait. Im sure your little one will be worth the crazy symptoms and I hope you find a balance when you are able to be treated without danger to the bub.
I didnt even think about how the levels are both at either end of the scale – that is going to be a paid. I was surprised to be put on 100mgs immediately, i thought the dosage was usually started low and then increased? I have a blood test in another 3 weeks to see how the medication is affecting my levels so hoepfully it isnt too complicated from there and I start to feel better soon. Its going to be a long battle, isnt it?
Post # 14
@Kriddlelouise: I’ve spoken to people who years later feel like crap, so yeah, I’m not looking for this to get better anytime soon 🙁
Post # 15
@Kriddlelouise: My dr said I would lose about 5 lbs very quickly and then I would stop, or gain it back again. It really depends on the individual.
I had a ultrasound on my thryoid and I had a goiter but nother bad, and the meds help to shrink it. You shouldn’t need a thryoidectomy unless you have thryoid cancer (you’re odds are increased now, but don’t worry about it).
I know someone who had their thyroid taken out though, and they just take horomone replacement pills everday (just like we have to do anyway).
I don’t feel like crap anymore (I was ALWAYS tired before I was diagnosed) I only feel like crap when I forget to take my pill in the morning.
Can I ask what dosage you are on?
Post # 16
Yes. I have had it for 8-10 years.
I reccomend going on an immediate gluten free diet. Start supplementing early, especially calcium+D because thyroxine leeches cal. Also seliniuem.
Thyroid levels are not a fool proof way of managing symtoms.
Doctors are going to dismiss a lot of your symptoms like fatiuge etc if your levels are good.
As you are early on in your diagnosis, heads of for a lot of back and fourth symptoms of hypo and hyper. Be prepared for flare ups.