Please help - I feel like I am losing myself thanks to my thyroid!

Hi All,

I hope you are all well!!

I was diagnosed with having a slight blip with my Thyroid back in August last year... I was told to start 25mg of Thyroxine, I was told by my doctor that I was not deficient and lacking in Iron/B12 but the thyroxine would just be the right thing to give me that little boost due to having no energy... As one of my symptoms is feeling completely exhausted, no energy to do anything, losing my hair, bags under my eyes the size of suitcases, just feel like I am losing myself!

The doctors would not do any deficiency tests, I recently had my three month blood test and they said my thyroid has got worse :( slightly down what ever that means as my doctors really do not come across they care to much in and out kind of thing.

It was 12.5 and now 9 (Does this mean the thyroxine has made my thyroid worse rather then improved it?) I called up the doctors surgery to see if my bloods where in, doctor who checked the bloods said its all good no change all normal then I get a call from another doctor to tell me that its gone down and I should try a dose of 50 rather then 25mg.

You see i am only 7stone10, I am quite conscious about gaining weight due to most women on my mums side sadly struggling with diabetes and struggling with weight issues, so I was so scared about taking thyroxine initially.

I am conscious about what I am putting in my body, but if its going to make me feel better I am so down for it... Sadly since taking the dose of 50mg, i have been getting headaches, terrible anxiety and I am now battling insomnia like never before.

I am so tired and exhausted yet cant sleep, I feel like when my head is on the pillow I just feel like I am laying on a rock and my pillow is as soft as a teddy bear :( I overheat, never can regulate my body temperature one minute warm then cold then warm then cold!

I feel so drained, the doctors said they did not want to put my on a dose higher then 50 as I am so small... Thing is I do not want to be popping hedex every day for pain relief.

I am not 29 not 90!! But of late i have been reading about self medicating, I have been reading about armour thyroid and was wondering your take on it and vitamins?

I was reading a post from a lady who had years of hell with thyroxine year, she paid to see a specialist and informed her to change her diet and take Selenium and Sea Kelp.

She no longer takes Thyroxine... She said she has not needed it since using the above vitamins.

I am half tempted to stop taking the thyroxine, it is not making me feel better its making me feel so poorly and worse!!

Please can anyone offer me advice, can I self medicate with vitamins? I miss having my hair, I miss being able to sleep like a normal person, I miss feeling like I used to!! Happy!

Sorry for such a long post but I am seriously losing the will!

I do not want to feel like this anymore, I cant stop crying!!

38 Replies

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  • First of all, you have s concerning medical problem, and need to get to the bottom of it. You deserve to have proper treatment.

    Next, you need good labs. If you pay them here, we can share what we know that may help. With what you've said, a good set of labs would include:

    TSH

    Free T3 and Free T4

    Reverse T3

    Thyroid antibodies

    Iodine

    RBC selenium

    MCV

    Folate

    B12

    Vitamin D

    Ferritin

    Estrogen

    Progesterone

    DHEA

    Testosterone

    24 hour adrenal cortisol test

    Vitamin D

    It may be challenging to do all of these on the NHS, but you can likely get the rest done privately from what I've seen here... I'm in the US and have to pay for all of mine.

    While waiting on tests, clean up your lifestyle, if needed. Proper sleep, daily exercise, reduce stress, and a Paleo type diet - lots of veggies, organic meats, wild fish, nuts, seeds, and very little fruit. Avoid grains, sugar, and limit coffee and alcohol.

    Get on a good multivitamin, like Thorne Research Nutri Fem, which has good ratios of bioavailable nutrients, formulated to support women under 40. It has some iodine and selenium, I think.

    Either the tests will show something or they won't. Post them, with ranges and we can advise. If they don't, you may have some else going on, like autoimmune condition, some sort of toxicity, an infection, etc.

    This should give you a good start. Hang in there, and be persistent in finding answers.

  • Sea kelp etc would add iodine which some could be deficient in but others not. I think the jury is out on that one.

    However only taking 25 mcg of thyroxine can make you feel worse. It is often given as a starting dose though now it is usually given to people with known heart problem and the elderly but basically it's a very low dose to get you body used to the thyroxine. That is why you are usually asked to return for another blood test in 6 weeks,the time taken to get the maximum effect of the drug into you your body. So generally you would get an increase then.

    On the down side our body can be a bit lazy and it knows we are getting the drug from elsewhere and thinks great I. Red t do that anymore! So in real terms the addition we hhave been given could stop what we were getting before which was possibly higher that the 25 mcg you are now taking and so you feel much worse and probably have a doctor who doesn't understand what can happen and/or is over protective because he doesn't understand it.

    On 50 mcg you should have been feeling better so it may be something else that is wrong. You probably haven't been told how to take it correctly, usually first thing in the morning on an empty stomach with a full glass of water to wash it down and no food for one hour as it needs time to be absorbed. There is a lot of useful information on the Thyroid Uk site about does and donts etc.

    What would be useful would be if you could post your bloods and the ranges so we are in a better position to comment. The ranges are important as they differ from lab to lab.

  • Thyroxine does not suit everyone. I was on it (taking a variety of different doses) for 18 months but felt worse and worse over that period. In the end I persuaded my endocrinologist to let me try no medication. Luckily he agreed and I am now feeling a million times better. It took three months for the drug to really get out of my system but I now feel my old self again. I have to be careful to get enough sleep, eat well and regularly and I have given up strong coffee and alcohol but all that totally outweighs the terrible side effects I was getting from Thyroxine. My blood tests still show my TSH is too high but I am managing to live a full and busy life again and am determined not to go back on the drugs.

    Good Luck - I hope this will encourage you to take your life back into your own hands.

  • Thank you!! Can I ask what do you take now with no medication?

    I feel so lost and spent!! Just can't do it no more x

  • I don't take any medication at all.

    As I said I manage the problem by early nights, regular food, cutting out strong coffee and alcohol and take plenty of exercise.

    When I was on Thyroxine I had bad palpitations, high blood pressure, indigestion, nausea, pain in my shoulder/ neck and back of head and just a feeling that I was totally removed from the real world. I kept having to take time off work as I felt so ill.

    I am now back at work, running two houses (120 miles apart so plenty of travelling) cooking, washing for husband and two grown up children still at home (!) Also have my 97 year old mother 120 miles in another direction who I speak to every day and visit once a month. And look after an ancient dog.

    Am not dead yet...!

  • I am sorry you are feeling so despondent today but I'd put it all down to your doctors who I don't think know anything about the thyroid gland except prescribe such low doses of levothyroxine. Too low a dose can backfire and make us feel much worse.

    So, I think you should really start at the beginning again and I'll give you some information. I do know how unpleasant hypo is and I was undiagnosed for a long time.

    Blood tests should be the earliest possible, fasting (you can drink water). Allow 24 hours between your last dose of levo and test and take afterwards. If you've not had B12, Vit D,iron, ferritin and folate tested ask for these at the same time.

    Iodine isn't recommended when taking thyroid hormones.

    To feel well we need a reasonable dose of levothyroxine and the doctors shouldn't be too concerned that you're thin but that your body has sufficient hormones to function. Our body cannot work properly if we don't have thyroid hormones. Our heart and brain in particular need the most as well as everything else from top to toe.

    Always get a print-out of your results with the ranges and post on a new question. It has probably taken years of thyroid gland failing before we are finally diagnosed, so it stands to reason we have to slowly work up again so that we feel well.

  • Thank you so much!! Just called the doctors... so receptionist read the bloody report to me.

    They have only standard tested me on my TSH- 1.20 & my 3T4- 9.6

    What does this even mean? X

  • You are completely undermedicated which is why you feel so awful. Ridiculous GP. 25 is only a starting dose, nothing to do with your size either as children take it! What an idiot.

    Can you afford to get private bloods done? If you're in the U.K.

    Bluehorizonmedicals do lots of thyroid testing.

    Thyroid plus 12 or thyroid plus 15 are good. Will test everything that you need doing in one go. You need to have your antibodies tested to check for Hashimotos Thyroditis which is hugely common and auto immune but we'll address that if and when you know you have it.

    Post results on here and you will get the help and advice you need.

    In the mean time get a copy of your latest bloods from the GP (it's your right) and post them on here.

    I suspect you will be low in some key vitamins too as runs hand in hand with thyroid and will also be making you feel shocking.

  • Thank you so much!! Just called the doctors... so receptionist read the bloody report to me.

    They have only standard tested me on my TSH- 1.20 & my 3T4- 9.6

    What does this mean? X

  • It's hard to tell what's really going on with just these tests. Your TSH (thyroid stimulating hormone) is actually pretty good, most of us like it to be under 1 to feel well but under 2 is good.

    Your FT4 is low. You need a reasonable level as the body converts T4 to T3. So I'm guessing your T3 levels will be low hence the exhaustion etc...

    A low TSH level together with a low FT4 level can indicate a disorder of the pituitary gland so I've read so may be worth asking your Dr.

    It definitely sounds like The Levothyroxine is not suiting young 50mcgs is making you anxious and shaky, usually a sign of too much and that is slow dose anyway.

    T3 or NDT (Natural Dessicated Thyroid) could maybe be the answer for you. You really need proper thyroid testing first though.

    TSH, T4, T3, RT3 Folate, feretin, thyroid antibodies is a must!!

    Vitamin D & B12 don't just believe your levels are ok if they say that you want the results!

    You could also get your adrenals tested. There's a 24 saliva test on bluehorizonmedicals Your cortisol may be causing the problem if you are very stressed and anxious.

    Try gluten free for a week or two and limit dairy as could help you to feel better if it turns out you have Hashimotos so worth a try now.x

  • The sleep problem is common - it sounds like your adrenals were attempting to compensate for many years while you went undiagnosed with an underactive thyroid, now your adrenals are spent too! Getting a decent sleep is dependent on being optimally treated, but there are other things you can do too (this is all form personal experience with weak adrenals :-) ).

    (i) Have a bedtime routine - with a set time for things to do (bath, moisturise, pjs, hot drink with rice milk, blueberries and gluten-free cereal, t.v. etc...)

    (ii) Only watch relaxing stuff on t.v. or read / chill for the hour before bed. Don't make phone calls to difficult people, go on-line, or get caught in any arguments - bedtime is 'me-time'.

    (iii) Check your resting heart rate. If it's fast (tachycardia) then you really will struggle to sleep. Personally I recommend getting a bp monitor that takes heart rate too - then you can have more 'data' to confront your GP with.

    (iv) Epsom salts contain Magnesium and are the best kind of bath to have when you're wound up like a top with aching muscles and migraines!

    (v) Avoid fried food for supper as you'll stay awake just by digesting it. Taking digestive enzymes with meals can help digest proteins and fats if your gut is struggling. Try and eat your main meal before 6.30pm.

    (vi) There's a lot of science in how our brains decide to go into sleep-mode... glutamate receptors need to be switched off and Gaba receptors need to be switched on... too much to cut and paste here... but worth looking into. Looking at the forums it seems that many insomniacs use a cocktail of magnesium and specific amino acids to help them. I personally recommend Magnesium and Taurine, but don't go too heavy on either while you're still under investigation.

    (vii) Drinking green tea is better than tea and coffee to keep you going after a bad night's sleep, it should also set you up for a better night's sleep the following night due to the L-theanine.

  • N.B. Magnesium can cause an imbalance of free calcium in the blood and needs B6 (P-5-P) to properly metabolize it. I take K2 and D3 to mop up calcium and also B-complex that has a shedload of P-5-P in it. So, do your research before supplementing and make sure that you've already had deficiencies highlighted.

  • I do understand I have been in a Carly the same boat!

    I have weekly injections of b12 and know what a difference they make. I hate to add confusion but I had those symptoms recently when over medicated I have reduced mine and my energy levels ave improved but I was on a much higher dose than you. Vitamins are a must! Do get yourself a sublingual b12 spray if gp won't give you any you will see some difference

  • Last post should have read exactly same boat! Predictive text!!!!

  • Try reading around the subject as well......

    for example, Dr Myhill's website for ideas on sleep.. (Chronic Fatigue Syndrome expert and endocrinologist who understands thyroids better than many).

    drmyhill.co.uk/wiki/Bio-rhy...

    I agree with Fdodd that b12 will help, but don't take extra iron, b12 or folate prior to any imminent blood tests.

  • Just called the doctors... so receptionist read the bloody report to me.

    They have only standard tested me on my TSH- 1.20 & my 3T4- 9.6

    What does this mean?

  • Just called the doctors... so receptionist read the bloody report to me.

    They have only standard tested me on my TSH- 1.20 & my 3T4- 9.6

    What does this mean?

  • FeelRuined,

    Did the receptionist give you the lab ref range (figures in brackets after results) for FT4 9.6 result?

  • I'm not really sure, she just said 9.6, I know I was 12.5 last time... I feel like the thyroxine has just made me worse :(

    my head is pounding I'm just so tired x

  • FeelRuined,

    Write to the practice manager to ask what the FT4 lab ref range is or ask your GP at your next appointment. Without the range it isn't possible to see whether FT4 is too low. It's odd that it should have dropped since you've been taking Levothyroxine. Usually FT4 increases.

  • Called Receptionist back-

    So range for tsh- 0.3-5 (1.20 for my individually)

    Freet4- range 12.22 (individually 9.6)

    I honestly don't understand it all

  • FeelRuined,

    FT4 is below range which means you are very under medicated and your GP should raise dose. TSH 1.20 is low-normal. One would expect TSH to be much higher when FT4 is below range. This may indicate secondary hypothyroidism due to pituitary dysfunction. If your GP suspects secondary hypothyroidism you should be referred to endocrinology for management as investigation will need to be made to ensure sex and growth hormones are not deficient.

    Levothyroxine is the treatment for primary and secondary hypothyroidism to raise low thyroid hormone. If secondary hypothyroidism is confirmed TSH becomes a valueless test and only FT4 and FT3 should be use to assess thyroid levels.

    cks.nice.org.uk/hypothyroid...

  • Out of interest, and I don't need details here (being nosey) how was your low thyroid detected in the first place? Were symptoms increasing slowly over time, or was there a trigger like illness, childbirth .. something like that and a relatively fast onset of symptoms?

  • You aren't nosey :) trying to help!! Cut along story short... My mother was attacked and raped last year I got incredibly depressed down in the dumps and started to feel tired and my moods where terrible!!

    The doctor said it was stress they did bloods and initially my doctor did not want to put me on thyroxine as my levels weren't to down from normal but wouldn't do anymore tests! No my thyroid seems to have got worse and I believe that the medication had no helped just made me worse! I haven't been able to work as I have had to look after my mum, believe me it's been on thing after another also lost her mum a few months ago so I'm battling to stay afloat!

    I don't want to take thyroxine if I am borderline, so I have asked about vitamins but they won't do no more tests! Now I'm in constant pain :( my head seems like it's going to explode... I think something else is going on and it's not my thyroid but now I am on the meds I think it's made me worse :(

  • Sorry for the spelling mistakes trying to type quick x

  • You've been through so much, you're amazing.... :-)

    I can relate looking after my mum who wouldn't leave the house after dad died was a nightmare and I had insomnia and depression for ages and had to check up on her at weird times just to make sure she was ok.. I was completely losing it.

    I'd definitely stay with the forum, loads of nice people here and even if it turns out that you have low thyroid as a result of chronic inflammation (Fibromyalgia or CFS - see Dr Myhill's site) rather than Hashimotos there's still a lot of knowledge here...

    You definitely need more tests done ... I think CRP and homocysteine would be useful too.

  • Thank you so much, my mum was visiting my brothers grave and that's where the man attacked her :( it's been such a hard an unbearable time!! Sometime I just want to give up!

    I hope you and your mum are doing ok as can be, I am really sorry to hear about your dad, I know how hard it is!!

    What's crp and homocysteine? I don't think my thyroid is the issue i think there is something causing these issues, but what do I know I just keep getting fobbed off and told to take medication for something cause they won't do more test :(

  • I think you should definitely do the antibody test for thyroid because that will help them look for another cause.

    CRP is an inflammatory marker (there are others as well) and if the Drs test for those inflammatory markers they'll know it's not just psychological!! Unfortunately it won't pinpoint where it's occurring.

    Homocysteine is an amino acid that we make in response to stress - it's actually toxic in high levels and can do neurological damage. It is reduced by having optimal thyroid treatment (good T3 levels - not just T4) and good B12 levels.

    In short, having your thyroid investigated is not a red herring but it may be part of a bigger picture that they're not really looking at.

  • Thank you son much!! I wish I had the money to get all the tests done, I wouldn't even bother with the gp's they just don't care... it's hard enough trying to get an appt :(

    I got an appt with an out of hours doctor tonight as that's all they had, I just can't go on with this pain in my head :( it feels so horrible!!

    any suggestions on what to say regarding these tests? I have copied the suggestions and I am going to look into price and cost if I have to sell a kidney at this rate I think I will :)

  • Where is the best place to get private bloods done? X

  • Certainly should be able to get the inflammatory markers done and most of the rest on the NHS if you have a very good Endocrinologist..

    Also, adrenal stress tests.. as endos do adrenals as well as thyroids.

    If you've not been referred to an endocrinologist then you must insist on having that referral done..

  • Stress hormones will bring down thyroid.

  • FreeT4 not 3T4 ( :-) ) and yes, it's low.

    You're hypothyroid and responding badly to treatment. Advice could be, just hang in there and wait for the Levo to work, but with so little data to go on you're not getting a big enough picture. Hypothyroid is not specific enough as a diagnosis.

    I'd insist on further tests as outlined above by other members and find out if you've got autoimmune thyroiditis or not (antibodies attacking your thyroid), because Hashi's usually means you'll need treatment for life.

    Please post your results when you get them..

  • Hi, i was in the same situation as you, Thyroxine does not agree with me, its sad the doctors d not recognise this with all the anecdotal evidence out there. i resorted to using doctors to get my levels correct on NDT. I don't tell them i'm on NDT as they seem to have am attitude problem, weirdo reaction if you do. GP's are a strange bread. All i can say is i dont get anxious, freak out, or think weird on NDT.

  • I suggest watching this guy, diet, stress, are big players in the thyroid. mine is totally gone 0% function, so you have a chance to heal yours, this guy is amazing watch him:

  • Hi

    I take taroxin and I feel same anxiety scream with my family I am losing my mind ,sometimes they are down and up so now I am having 100mg of taroxin a day,but I used to take them with breakfast but I was doing wrong so I rang up the thyroid foundation in Sidney and they told me that I am doing wrong u have to take them by them selfs 2hours before u u touch any food but I am in the same booth like u I am so tired I can not sleep much I lose it fast and when it's time to clean I really lose it but I feel sorry for my family for the way I am treating them but even if I break something I cry,cry,and cry I feel like I am losing my mind I can not stay home I want to run out especially now that I am on a 100mg I can not stay still I think that they are high I have to go an have a blood test, but my dad side of the family the women all got it that is how I got it ,we can not do any thing it is heraditry

    Best regards

    Ann abela

  • Taroxin. Is that synthroid?

    I fell for you. My marriage broke down for the exact same reason Dr Joe Bergman the guy giving lectures in the video above sis state that synthroid can set off depression, manina, anxiety. I hate the stuff. I run out of NDT for 3 weeks and went back on. I was back to freaking out. You need to change what your doing that's a fact. Take charge. Maybe your on to much??? 200ug is more of a dose than if the tjyriod has been removed. Change doctor. I changed 7 times until I found someone in phase with me.

  • Found a website that sums up some stuff that's been covered and lots more besides.. worth a look.

    foodforthebrain.org/

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