Thyroid UK
84,274 members99,293 posts

Newly diagnosed please help!!! I know nothing 😭

Hi, I’m 32, I got diagnosed this morning with underactive thyroid I’ve had all the symptoms so bloody tired all the time gained 12lbs I’ve now been put on Levothyroxine 25mg a day but I’m terrified gonna get really fat ( I’ve read loads of horror story’s online saying the Lev has made people fatter I’m 9st 12lb now I workout and eat reasonable well.. could anyone please shed some light I’m panicking!! When will I start to feel human and not so drained again if ever!!!

24 Replies
oldestnewest

Well, that's all you get, on-line, horror stories. You rarely get the success stories. :)

Levo is not the monter it's cracked up to be. Lots of people do very well on it. Unfortunately, your doctor started you on rather a low dose. The starter dose should be 50 mcg unless you're very young, very old, or very frail. So, things might get worse before they get better, I'm afraid. Although, you could go back to her after a month and tell her you feel you need an instant increase in dose. Works with some doctors.

Did you get a print out of your blood test results? That's something you should always do - it's your legal right to have a print-out if you live in the UK. You need to see exactly what was tested, and exactly what the results were and learn to understand them. You need to keep your own records, and on the back of each print-out, note what you're taking at that point and how you feel. These records will be invaluable in years to come.

In any case, I imagine that your FT3 is rather low at the moment. So, if I were you, I would stop working out. It's not going to make you lose hypo-weight, and might be making you put more on. You need optimal FT3 to be able to support strenuous exercise. So, until then, just gentle walking or swimming. OK? :)

When did your doctor tell you to go for a retest? It should be in six weeks time. When you go, make sure it's early in the morning, and fast over-night. That way you will get the highest TSH, which is all that doctors tend to look at. And, leave 24 hours between your last dose of levo, and the blood draw - in case she tests the FT4. And, don't forget to ask for the print-out! :)

1 like
Reply

Omg it’s all so much to take in lol, what is FT3 and what does hypo weight mean!! Sorry for all the question I’m new to this and was totally unexpected literally been crying all day thinking I’m gonna be 20 stone in a couple months after reading all the stuff I did!! I’ll get my blood print out Monday and I think he said 4 weeks time for re test xx

1 like
Reply

Just a personal time frame anecdote as we are all different in our responses to treatment. In early April I finally got a good doc and was prescribed new meds and dosages, and had some Vit D added. At that time I was feeling so bad with a variety of sx I could hardly find the energy needed for daily activities. Since that appt even though my meds are not yet optimal (that takes time) some of my sx are much better. My muscle aches and pains are almost gone and less frequent. My anxiety, depression and crying jags are also much less frequent and severe. And so on. Stick with this forum and get copies of your labs and post them for advice. You will get all the help you need from some very knowledgeable people who have been where you are. And soon the confusion you feel about all the info coming your way will sort itself out and you will understand more and more about your thyroid. And you will probably end up knowing more about good thyroid treatment than many doctors. Just hang in. And don't worry about your weight. As your meds become more in line with what your body needs the weight will take care or itself. xx🐱😊😊 irina

Reply

Thank you so much I’ll defo be getting my results to most as he didn’t tell me a lot just sent me away with tablets and said he’ll see me in 4 weeks for more bloods, it’s so hard with 4 children but I just gotta keep going! Thank god I found this page ❤️ xx

1 like
Reply

I believe you will pick up thyroid knowledge easier and faster than you think. Then it will be easier to hold your own with docs esp when they are not forthcoming with info and you know the right questions to ask to let them know your expectations re your care. You are the boss of your treatment and doctors work for YOU! (even tho they may not always know this!!!) Take care xx

1 like
Reply

Don’t panic, I’ve been in levothyroxine for years now and it hasn’t affected my weight at all, my mother has been in it for years too and she’s ok, no reason at all to think it’ll affect you that way. Btw. It maybe worth also taking zinc and selenium supplements daily, that may help a lot, best of luck

Reply

Thank you so much for your reply I breathed a sigh of relief than I’ve put on 12lb recentlyand already feeling uncomfortable-do you think now I’ve been put on meds I’ll be able to lose it? And I’ll defo get some zinc and selenium can you please explain how they help I’m open to anything xx

Reply

PS your more likely to loose the weight when your thyroid is working better with Levo

Reply

It’s worth looking up selenium, zinc and thyroid you’ll find a load of articles, they are known to help the thyroid work better,

1 like
Reply

Aww I’ll have a look thank you!! I use to take zinc about 4 years ago I wish I never stopped now x

Reply

Hi I have been on thyroid meds for 12 months I put weight on about 14lb have eaten healthy but it will not come off I've been told the weight doesn't come off till your on the right dose of meds it's a terrible illness seems to take forever to get on the right dose but just try to eat healthy hope you feel better soon

1 like
Reply

Hi BB, Have you posted your lab results and med dosages for some of the pros here to see? They will let you know if you are undermedicated and what tests you need to get a complete thyroid picture and that your doc may not be ordering. A very common occurrence with many docs who are married to lab results that are in "normal" range instead of how well the patient's symptoms are resolving themselves. Just a thought. Many of us have gone through this phase of being undertreated til we understood what our labs should be and found docs who are willing to work with us. The support is here. 😊 irina

Reply

I’m gonna go and get them Tuesday hun xxx

Reply

Can I just walk into the surgery and ask for a print out of latest test results xx

1 like
Reply

I'm in the US and mine are online. From what I understand from this site is that even though you are entitled by law to have your results sometimes you have to deal with recalcitrant office people. Stand your ground. Also hopefully people that deal with the NHS can better advise how to navigate problem people. If it were me I would call ahead as a courtesy to give them time to print them. And going forward I would not leave a visit without having my labs printed and in my hand. xx🐱

1 like
Reply

Hi irina thankyou for taking the time to give advice no I haven't posted my lab results I have them done again in 3 weeks so I will ask for them to be printed out over the last 12 months I've just had to change my medication brand from Teva to Almus Actavis the teva brand was giving me terrible side effects the worst been terrible stomach pain and constipation my gp tells me good results no action needed this weight will not budge I've tried everything over the 12 months to loose some my stomach is swollen terrible I'm on 75 micro grams last time I had my bloods done my TSH was 2.1 and my gp wouldn't increase my meds from 50 micro grams I had to keep going back and saying how poorly I was feeling I have no idea of normal lab results I have loads of symptoms of under active thyroid xx

Reply

I'm always concerned when docs are vague about where our results fall within the normal parameters especially when we are still symptomatic.. Just being in range is not specific enough. We need to know where our results fall within the normal window. If it were me I would get my results and post them on this forum. Please also ask what labs should be drawn to get a complete picture of your thyroid function so that the labs that will be drawn in 3 weeks will include vitamins and a complete profile. There are members who have a lot of experience about evaluating supposedly 'within normal'results. This might be your problem. I'm happy to hear you've changed from Teva. I would suggest reading some posts about Teva as quite a few of us have had problems with that brand, myself included. Please do some research on the site about 'normal' lab values. Ask for opinions. You may be undermedicated in spite of your doc saying you are fine. There are people on this site with much more experience with this situation. Please ask for their help. I also wonder if your doc is checking all values necessary; not only thyroid numbers but vitamin levels also. For myself I would not accept "good results, no action needed'. Too vague. Please do this for yourself soon. Take care. irina

Reply

Hi irina thankyou for messaging me I am going to see my doctor again next week if I can get an appointment xx

1 like
Reply

Kayley, read up everything you can about the thyroid. Study like you are about take an A-level next month. Ask questions on this forum even if they are very simple or basic ones, there is always someone somewhere in the world who will give you and answer. I had to go totally manic for about a year on this subject, it wasn't pleasant. I never had a biological lesson in my life and never intended to (it's just not my thing). That all changed when I had a total thyroidectomy, just like that, I lost one of the most important organs in the body. By sheer luck my endo got me on the right track initially (T3 only for about 4 months) but then started to screw up (under-dosed Levothyroxine). It was at that point that I hit the books and the Internet and saw the mistakes she was making. I spend days on end on the computer learning how to self manage my condition it took a couple of years and some courage.

Teach yourself Kayley, read, read, read, your health will depend on it.

1 like
Reply

Thank you so much hun I will do get on with the reading, it’s so much to take in at first isn’t it xx

1 like
Reply

Yes, for me it was overwhelming but if you keep going you will master the art.

1 like
Reply

Thank u hun!! Gonna chill with the children over weekend and then get to it Monday xx

Reply

My philosophy too. Educate ourselves then maybe we can educate a willing doctor or two!

2 likes
Reply

Hello Kayleysherborne87,

Almost everything you need to know has been covered by very knowledgeable people. However I would like to let you know that I have been there, I was terrified of having this condition due to the “horror” stories that I was told about treatment. All that vanished when I got educated and read up on my disease. I now feel so much better (weight is a struggle) but overall levo has agreed with me. You must know that everyone’s treatment is unique and there are so many treatment options available. I know right now things don’t makes sense but they will and I guarantee that you will feel so much better! Take it from a guy who was diagnosed recently at 23, some were even diagnosed at much younger age. All in all I hope you get comfortable with the idea that you can have a happy healthy life even with this condition. I hope this forum is as helpful as it is to me. Good luck!

2 likes
Reply

You may also like...