Recent diagnosis, advice appreciated

Hi. I was hoping for some re assurance and help of understanding my recent diagnosis of under active thyroid. Been getting myself in a panic.

I became so weak and sore I ended up taking myself to a&e and that's when my results came back (I was home when I got results) that my thyroid levels were so low they couldn't even get a reading so it had basically packed in and my tsh was at 100.

This is day 6 of being on levothyroxine, 2 days at 50mg but endocrinologist called and said to double to 100 after day 2.

My biggest concerns are the swelling in my neck which he said is goitre but hasn't actually seen me and the swelling in my hands feet and face. Has anyone had this? Also does anyone know when you notice a difference with meds? I have 3 small kids and I'm finding it hard to keep up. Even my brain slows down. Sorry for massive story I'm just so worried oh and i take 100mg of sertraline daily for depression and have done for 8years.

Any advice would be gratefully appreciated 

Thanks in advance

Ashley xx

33 Replies

  • Hi Ashley

    OK - first things first; hypo thyroidism is completely treatable so don't worry too much, that's the good news. The bad is that it takes time for the meds to take effect. Normally to go from being hypo (after a long undiagnosed period) to get back to normal is around a year. During this time you will gradually get better and better 

    Initially it will take around 6 to 8 weeks for the meds to get into your system. However they need to ramp up your dose slowly as a full dose can be a shock to the body. Doses of levothyroxine normally max out at 150 mcg but some people can go higher.

    Swelling, goitre and other symptoms should reduce but unfortunately it's not quick. But they will go.

    You may need vitamins and minerals as after a long time hypo you may have low levels. Getting these sorted out will hasten recovery. I'd suggest asking the docs to test you vit D and b12 levels as a minimum but others will jump on to tell more about this (not my specialist subject!)

    So, take the meds, explain to people that it will take a while to get back to normal and try and be kind to yourself while you recover. When I first started to feel better I tried to do too much and it does backfire...

    Good luck and don't worry

  • Thank you so much for taking time to reply. This is the 1st I've ever joined a forum and already I feel better :-)

    Do you recon with levels being so low that I've had it a while? 

    I had more bloods taken 3 days ago for other autoimmune diseases (don't know what) could this be for the d12 and vit d?

    xx Ashley xx

  • If you've been on sertraline for depression for eight years, then your thyroid has probably been failing for longer than that. It takes quite some time for the TSH to reach 100. Pity they didn't test your thyroid before handing out the anti-Ds, because depression is a major symptom of low thyroid.

    I very much doubt that they would test your vit D or B12 without being asked. They are probably testing for things like rhumatoid athritis. But you need to ask them for vit D, vit B12, folate and ferritin. All these need to be optimal for your body to be able to use the hormone you're giving it.

    Do ask for a print-out of your results when you see the endo or your doctor. It is your legal right to have one, they can't refuse. Always get a print-out of any blood test you have. It's the first step to getting well.

    You should be retested after six weeks. When you go for your next test - and this is very important - make an appointment for early morning - as close to 8 am as you can. Don't have breakfast, just water - they will probably tell you it's not a fasting test, but it's best not to eat - and leave 24 hours between your last dose and the test. That way, you will get the most accurate results.

    This is a serious disease, not just a blip, and your family need to realise that. You need all the help you can get with the children because you need as much rest as you can get. Don't ever let anybody tell you that thyroid problems are not important. They are. You need as much TLC in the beginning as someone who's broken a leg. :)    

  • Hi. Thank you for your helpful reply. I'm learning so much and I don't feel so alone which I have done for a while. 

    It's very interesting about anti ds as I have asked doctor to test my hormone levels before when I came off sertraline but started to feel low again and he was like no it's your depression has returned. I also had to take myself to a&e (which I avoid) as doctor thought I was just run down. The hospital told me the same and even blamed my depression until I had to ask for thyroid test. I probably wouldn't have (I'm not a pushy person) if friends and family hadn't insisted I do so. My blood pressure was high too which alarmed me as I've never had that before, ever! Even when I've been really sick.

    I'm taking all the advice on board and can I just say thank you for just taking time to listen and understand. Really has helped very much.

    Hugs, Ashley xxxx

  • You're welcome, Ashley. And, no, you are not alone. We're all here to help you.

    The huge problem we face is that doctors Don't know anything about symptoms. They just didn't learn them in med school. It can be glaringly obvious to another hypo, but a doctor will just say that your symptoms are nothing to do with your thyroid. They are so wrong!

    There are over 300 symptoms of low thyroid - high blood pressure is one of them - but I doubt if any doctor could cite more than two, if that. I expect you have quite a few other symptoms that you haven't even realised were due to your thyroid. But anything and everything can be. Either directly or indirectly. If only doctors realised that! :) 

  • I think that you've possibly had it for years and it may be why you were diagnosed with depression BUT don't start changing you anti depressants or not taking them. Get a few months into the levothyroxine treatment (after you are on the right dose) and then ask for your anti Ds to be reviewed if you're feeling better (physically and emotionally obviously!)

    While waiting for the tests recommended by Grey Goose below it may be worth taking a good multi vit (ideally 4 hours after the levo) or you can wait until you've been tested. I know my levels, particularly of Vit D, we're laughably low when I was diagnosed but now I'm on the right meds and eating properly (I'd put in so much weight I was on a very restricted diet prior to diagnosis) things have sorted themselves out naturally in that department. However it's 2.5 years or so since I was diagnosed and if I could have short cut anything on my recovery I would have.

    BTW - have they told you that you can get a card for free prescriptions (as the Dr for a form)? This will help with costs if you need other meds.

    I didn't have a goitre but did have around 8 chins. I now only have a couple and that's more due to my weight (which is moving off but slowly) rather than thyroid....

    It will get better 

  • Thanks a lot for taking time to reply and I had a giggle about the chins.. I have gained so much weight too which I have to giggle about or I'd just get really low. My partner said my head looks like a bowling ball lol my eyes are so puffy I can't open them I actually started to blame my weight gain on feeling yuk. I've never been skinny but never this size either. I have my work cut out when I'm not so weak .. Also has anyone lost their hair? Seen its a side effect and don't know if I'm being paranoid but I have a lot of long thick hair and it does seem finer. I don't mind as it's quicker to blow dry but don't fancy being bald xxx

  • Hairloss- I have bald patches at the side of my head, receding hairline and I had no eyebrows... The bald patches are getting smaller but I don't think they'll ever fully grow back and I have about a tenth of an eyebrow on the right and three hairs that I'm attempting to train as a comb over on the left. I also lost all the hair on my arms and most of it on my legs although the latter seems to be coming back a bit. 

    According to my previous quack all this was due to my 'early menopause' that apparently started in 2007 and still hasn't actually occurred (waiting for my first hot flush) .... 

  • Aw sorry to hear that. I was asking my sister inlaw earlier for advice on how I could help prevent hair loss (she's a hairdresser) she said look for products that are sulphate free but if I do start to lose hair you get nioxine that boosts hair growth so you could maybe try that? With your eyebrows you could get a brow pencil.

    and if not then I bet your still beautiful anyway x x x x

  • I got tattoos for my eyebrows and my hair covers the sides so I don't think most people notice ;-)

  • I love the tattoo eyebrows. So expensive but they look so good xx

  • Hi, this is exactly what happened to me on the 15 March. I was away with it, couldn't function or drive as so dizzy and weak. My levels were off the chart. Anyway like you I was in panic mode and googled everything- crying for weeks as my medication didn't kick in at all. However last week at week 3 I saw big improvements, albeit not myself (far from it) but I could function and even returned to the gym. Yesterday which was 28 days into medication, I felt I had a normal day. Went a run, cleaned house and looked after Kids all day.. So there is hope! I saw the specialist a week ago and he confirmed Hashimotos. 

    Are you booked to see anyone at the hospital? He is probably correct in that all the swelling is what he says. Sorry for long message, just some reassurance that in a few weeks you should see a difference. 

    The specialist told me 28 days before it got into system and 6 weeks before I see a real difference and 3 months he hopes for normal because levels were shocking - his words. I read so many negative posts and stories that really disheartened me. I thought maybe best to be more positive. Get better soon x

  • Hi. Thank you for replying.

    i have to confess I have googled a lot and I think i made myself panic more. I just didn't know what was normal and what was not.

    Only spoke via phone to specialist. He said he will see me at clinic once I've been on meds for a few weeks.

    Briefly read about hashimotos but read so much I don't think I've took much in. Is it different types of thyroid? 

    It's great to hear your on the mend after 3 weeks and there is light at the end of the tunnel.

    I suppose like yourself being a mummy to 3 young children we can't afford to have a cold never mind this. I have been naïve to this illness.

    Xx Ashley xx

  • HI ashley sorry to hear you not feeling too good, it will get better it does take time,

    you do know that you do not have anything to eat or drink for at least 1 full hour after taking your thyroxine and that any other meds' should be taken at least four hours' after thyroxine, each time you have your bloods' taken do not take your meds' before,

    take them after,  also any blood tests or any other test results'  always' ask for a print out from your gp i have all of mine and although you may not understand them[idont']

    somebody on here will hope you feel well soon try to keep calm

  • Hi. I never knew it was 1 hour I was told half an hour. Does this include a coffee/tea? 

    No one told me about not taking medicine before bloods either, thank you and I will ask for print out when I get next results. 

    Thank you for replying and your helpful tips. Means a lot 

    Ashley xx

  • Coffee interferes with the uptake of hormones.

  • So it's not good? I take it that's caffeine in general? I have a lucazade now and then too xx

  • I'm sure some coffee be fine but I'd take it well apart from levo. Everything in moderation, I think.

  • yes no tea or coffee water only, no they dont' tell you anything you have to learn things'for yourself they dont want to keep us informed  at least on this site you won't be learning the hard way' people helped me on this site and i try to help others'  good luck

  • Thank you I will hopefully be able to return the favour like yourself bone day as already learned so much and feel more relaxed as I was thinking all sorts xx

  • Welcome to our forum, and it is yet another sad story. I was diagnosed with the same TSH as yours and know full well that doctors are completely ignorant of clinical symptoms. Your depression (and I am in no way medically qualified) is probably due to you being so low in thyroid hormones.

    Our thyroid hormones are critical for our whole body to work in unison, the most important, heart, brain and every single thing from top to toe.

    You will not feel well yet as it takes about 4 weeks for levo to kick in and it must be extremely difficult for you with young children which need attention.

    Hypothyroidism is a serious condition if not treated properly so we have to read and learn and know what's going on. I do hope your Endo is good even though he's not yet seen you. I will give you a list of symptoms which you can tick off for your consultation. (He may not be aware of all of them).

    Any blood tests should be at the very earliest and don't eat before it. Allow 24 hours between your last dose of levo and the test and take it afterwards, otherwise it can skew the results and you won't get the proper dose your body needs.

    Also ask GP for Vitamin B12, Vit D, iron, ferritin and folate as we are usually deficient.

    You take levo when you get up with one glass of water (tablets can stick in throat) and wait about an hour before eating. This helps levo to be absorbed as food can interfere with the uptake. You can take vitamin C with levo (I took powdered Vit C in the glass of water (1/4 to 1/2 teaspoon) as it helps to convert levo also called T4 into the active hormone which Is T3. It is T3 which is needed in all our receptor cells and can also be used for depression. If the depression is due to hypothyroidism I don't know why doctors don't prescribe T3 instead of another medication.

    Your endo might be sympathetic and prescribe some T3 to your T4 for you. 

    Also, once diagnosed with hypothyroidism it is a life-long condition and we then get all other prescriptions free for any other medical problems that arise.

    Always get a print-out of your blood test results for your own records and you can post if you have a query.

  • Hi. Thank you for your very helpful reply. I really wish I had known all this a long time ago but better late than never.

    Your very right about doctors. Even when I took myself to hospital (I don't like hospitals) the doctor was very patronising and kept referring to my depression and even told me I should see the optician about headaches.

    So I should mention t3? Not that I fully understand what it is haha what is the difference between levothyroxine and thyroxine? Sorry for all the questions but I really do appreciate all the help. Your all so kind x x x

  • Thyroxine is what our own body produces. Levothyroxine is a synthetic hormone which should convert to T3 (liothyronine) which is the active hormone our body requires to function normal. Levo is inactive.

    Wait till you have had a good try with levo as it takes time to get to an optimum dose. Some do fine on levo if they're given sufficient dose. If you then still feel unwell you can request T3 but it is rare to be prescribed.

  • I take it t3 is better then? 

    i know this might sound really silly but I worry in case it's cancerous. I know it's rare and I'm just being super paranoid but how would you know? 

    I just turned 30 in March and I have an 8year old, 6year old and 5mobth old baby. Each delivery I have haemorrhaged and read that that can cause sheehans syndrome (something to do with thyroid) do you know much about that? Xx

  • I do not know anything about  Sheehans Syndrome and have just looked it up it is postpartum hypopituitarism or postpartum pituitary gland which I think might be more serious than hypothyroidism.

    When you get to an optimum dose of levothyroxine (synthetic thyroxine) should convert to sufficient T3 - it just takes time. After a while if you aren't progressing some might ask for some T3 so it would be T4/T3 combined.

    Maybe your pregnancy began your problems as I know some women get postpartum thyroiditis. It's tough when you are newly diagnosed and with three children to care for when at times you might think you could do with some care yourself. 

    Go to the date September 11, 2004 and the couple of questions from then on - although not the same as your condition it might be helpful:-

  • Yeah thyroid cancer, how would you know? The swelling in my neck and face just really worries me but to be honest it isn't taking much to worry me at the moment, my head is all over the place. I'm sure when the Levi kicks in I'll be feeling back to my bubbly self. Just so much to take in I suppose especially when I'm so weak and slow at the moment. I'll have a Wee look thanks for listening to me blabbering on xxx

  • Dont worry about cancer as I'm sure if there were suspicions it would have been investigated.

    When we're unwell our mind can run riot but you should soon be increasing your dose and gradually you'll improve and take things in your stride.

  • Your so right. Thank you xxx

  • Do you mean your condition might be cancerous or that taking T3 might cause it?

  • Hi Ashley, 

    Welcome to the lovely group, loads of lovely help.

    I'm 6 years post diagnosis, now on 125mcg. I prefer to take my tablets at night, 2 hrs after I've eaten, just before bedtime. Then I don't need to worry about taking with iron, calcium, tea and coffee etc. I find it much easier.

    When I was first diagnosed I had no neck, and loads of fluid- it came off slowly, took a couple of years. But I'm now back to looking like me.

    Like others have said, you've probably been getting poorly over a long time. So it takes a while. Don't expect immediate results. Be kind to yourself! Ask for help!!! (As mums we're not so good at that!), 

    You'll get there! Good luck x

  • Thank you for your reply and helpful information. I'm so happy to hear you are on the mend xx

  • Hi!  Like  you I believe I went undiagnosed for a long time.  So for me it did take a while before I was on the right dose.  They overdose me at first started me on 137.  They had to start over with a lower dose and gradually increased.  For me it must have been going on for several years and it did take over a year to feel better.  I had many aches and pains.  My face changed voice everything.....Your meds will kick in and you will get well!  All the best to you Susita

  • Also I do think the depression will work it"s way out.  That may take a while to straighten out since you have been on meds.....give it all time xo

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