Burnt out

Hello all . Can anyone help I am at my wits end . Went for Ultrascan yesterday was told I really don't have any tyroid left . I havnt felt normal in 4 years an seem to be worse so much pain in chest back neck arms . I have completely lost the bubbly funny person I was now a sad recluse angry individual . Anyhow not sure what to do now after yesterday's news I've been trying for so long to do everything right to help myself vits meds etc . Sometimes I wonder have I been wasteing my time . My doc doesn't get it said few weeks ago think u might have fibro then copd one Costcondritus .... Please have u ever . Sorry for the rant but I really need to try n get better my hubby has sec pro ms I can't afford to be like this could someone tell me what I should try . Thanks for any advice

33 Replies

  • Welcome to the forum, Donnanomore.

    It sounds like you may be undermedicated. How much Levothyroxine are you taking? Post your thyroid results with the lab ref ranges (the figures in brackets after your results) and members will advise. If you don't have the results ask your GP receptionist or practice manager for a print out and post them in a new question.

    If you haven't had ferritin, vitamin D, B12 and folate tested ask your GP to test them. Deficiency and low levels are common in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Low ferritin/iron also causes breathlessness.

  • I get my bloods done this coming week I will post . Thank you I have never been tested for the ones u have mentioned . I will ring on Monday o have them included should I ask for cortisol to be tested . I have had a very traumatic past two years just wonder has that effected my health . Thanks for advice

  • Donnanomore, you can ask for cortisol but the blood test isn't particularly helpful, just tells you whether morning cortisol is low or high. I think cortisol blood draw needs to be before 9.00am.

  • Donnanomore,

    Trauma can have a devastating effect on the adrenal glands leading to hyper activity and eventual fatigue. This in turn can aggravate any thyroid issues and have far reaching effects on overall health.

    Members have found a saliva test to be more beneficial in deciphering an adrenal problem. Details on ThyroidUK website.


  • Also when having Vit bold tests, ask for thyroid antibodies to be tested, TPOAb and TGAb.


  • Ok it's just I have read a lot about this on this site . Don't really understand it fully thanks again

  • without knowing what your test results are for


    Free t4

    Free T3




    Vit D3

    its hard to tell you

    Be very very sure not to take Levothyroxine or T3 in the 24 hours before the tests

    but I do know that for my husband , daughter and granddaughters only NDT has restored a good level of health

    it does take time but it is all the difference in the world to levo or t3

    If you have been through intense stress then your adrenals will be much of the problem

    be very sure to take at least 2000 mg of vit C a day and methylcobalamin form of Vit B to gently help them recover ( but do not take the B vits till AFTER your blood tests)

  • Thanks can you tell me how to get that type of vit b I've been taking b complex 100

  • You need to get the STTM book and go on the STTM pages on fb. I'm guessing you've been treated with levothyroxine which is t4 only. You need t3 as well as you're likely not converting t4 to t3. Ask about natural dessicated thyroid which contains all 5 hormones the thyroid produces instead of just the one.

  • It is all very well saying that desiccated thyroid contains "all 5 hormones", but a) how much T2 and T1 does it contain?; b) does any of the calcitonin that was originally in the porcine thyroid survive into the bloodstream of the person taking the product?

    As T2 is produced from deiodination of T3, what advantage is there in taking T2 once adequate T3 levels have been achieved?

  • WiccaDee, No-one needs to get the book you've mentioned, neither do they need to go to another thyroid support site. Although of course they may 'choose' to do so.

    If you read around this forum, you will see that there's a wealth of information right here about all the various thyroid hormones and the effectiveness or not of the various medications.

    It's most important to remember that there is no 'one size fits all' thyroid medication. Desiccated thyroid works wonders for some, but not for all.

    Some individuals that need T3 alongside their T4 actually find the synthetic T3 works better for them than desiccated thyroid.

  • There is quite a lot of information on the main Thyroid UK site, here:


    (Thyroid UK is a bona fide charity. STTM has become, at least de facto, a business.)

  • Agree about T3 I've tried it but felt absolutely worn out and fatigued all the time so stopped taking it. Great for those who do get on with it and it helps, jealous.

  • Perhaps 'needs' was a poor choice of words. You are correct that there is no hard and fast rules as we are all different. I have found the advice on here and the site I mentioned to both contain useful advice and merely wished to share that.

  • Thanks wiccadee... I am grateful for any advice really appreciate it ):

  • Thanks so much for info . I will be ringing my surgery tmw I only get tyroxine . I buy my own vits bcomplex vit d3 l lysine vit k vit a an vit c 2000 . Would I b better to buy a litre bottle of spirits lol :) thanks all

  • How much levothyroxine are you prescribed? If you have no thyroid function, a full replacement dose is probably somewhere around the 150 to 200 mark, though some people need much higher doses.

    X g

  • Hi there, Donna. What an awful thing to say to you, baldly, like that. That's scary news. I bet you were devastated. I'm guessing no way to better health for you going forward (erk - awful phrase: sorry!) was outlined? Just keep taking the tablets :-(

    This could be what has happened to your thyroid: en.wikipedia.org/wiki/Autoi...

    Exhausted Adrenals can have a quite devastating effect on health in combination with hypothyroidism (as others have said below)

    And good vitamin and mineral levels - generally, and specifically Vits D3 and B12 - will help no end. We thyroidees just leach them as through a sieve. I actually don't know why - but we really do. Some meds and some vit and mins need Vit C and K to help absorbtion.

    And (finally!) you know to take your meds with water an hour before anything else and 4 hours from supplements, don't you?

    All of this will help you in the short term. Giving you some space to read around, and find out what has happened to your poor ol' thyroid, and what you can do to help yourself regain 'you'. Everyone on here is on a similar journey. There are many paths to that destination.

  • I take 75 one day an 100 the next my antibody was around the 600 mark . Thanks guys for all advice. I really am trying my best but sometimes it gets a bit tiring mentally as I'm sure your all well aware . But I suppose it could be worse ):

  • Re Supplements -I am correct in saying that it is only iron and calcium that needs to be 4 hours away from thyroid meds.

    So so sorry that you are going through all of this. If they are saying you have no thyroid left then you will indeed require a full replacement dose. What that is varies from person to person. Certainly a friend of mine who had her thyroid removed started straight away on 200mcg of levothyroxine. When I was taking it I ended up on well over 300mcg. So the key is that it should be optimising your health and minimising any side effects -such as fatigue, breathlessness, weight gain, swelling of ankles etc... Your GP should be taking both the clinical and blood test results into account. Whether they do is another matter but that is what NICE recommends!! Any dose increased decided upon will need to go up very slowly over a number of weeks/months depending on how under dosed you currently are.

    Wishing you well -please keep us all posted!! Hugs..

  • Think we crossed over in our reples! As you have a high antibody level that would indicate that you could have Hashimosis -which is an autoimmune disease that attacks the thyroid eventually destroying it. 100/75mcg of levothyroxine when you have no thyroid left as you have been told is really quite a low dose to be on. Have you been on that dose for a long time? Sounds like you are likely to need an increase.

    Many people with Hashi report feeling much better on a gluten free diet as it can help to reduce the autoimmune response. Might be worth you considering.this too.

  • Thanks waveylines for the hugs ... :). I've been on tyroxine 4 years an every time I got bloods done it was either increased or decreased . Ivebeen asking for a long time to c a specilist but never was sent . Only because I feel like I've a restriction in my neck area my doc sent me for scan . Thanks again for advice really do appreciate

  • Donnamore

    Firstly its vital that you never take levothyroxine in the 24 hours before a test

    2nd get the tests done early in the morning when TSH is higher

    Its vital you get

    Free t4 and free t3 done because TSH alone is simply totally inadequate because you may have Central /2ndary hypothyroid

    Seems to me your GP has virtually no understanding of hypothyroid

  • Oh I've never heard of that either . No he had to look on computer to find out if high antibodie was hasi . Thanks so much I will try to find out what secondary central means or mabe if someone has time they could steer me in the right direction

  • Donna

    most GPs only know about Primary Hypothyroid which tends to occur in old age and where TSH rises because the pituarity is pushing out TSH to flog a failing thyroid and theres no antibodies

    In younger people it tends to be Auto Immune Hashimotos /inherited Hypothyroid where if the failure is in the pituarity its Central / 2ndary hypothyroid and then TSH will stay low or non existant because the pituarity cannot push out TSH to flog the thyroid into action

    in this form which is by no means as rare as they think the pituarity and the thyroid are damaged by the antibodies so no doctor must ever rely on just TSH

    they must always test free t4

    and free t3 too

    your GP will need to put Hypopituarity/central hypothyroid ?

    on the request form when he request free t4 and free t3 otherwise the NHS labs ignore it and only test TSH

  • Thank you so much I am not young I am 51 but I think I've mabe had this trouble a long time . But thanks for takin the time to explain to me :)

  • Hi when they found out you didn't have any thyroid left what medication did they put you on? Thanks

  • Gizmo 33. The consultant said you have no tumours but very little tyroid left we will notify your gp an I said is that it then an he replied ... Yea an I left ....

  • Next time you go to the consultant or the doc go loaded for bear:

    take a list of your most pressing symptoms

    take a note of what outcomes you want from the consult

    take someone with you (they are less likely to fob you off if there's a witness)

    try not to lose your temper (I always struggle with this one :-) )

    don't leave until you get what you want

    Now all you need to do (!!) is work out what it is you want. Baby steps on the road to understanding your condition will pay great dividends down the road. You have to chivvy these bally people with a cattle prod - they know nothing and, apparently, are keen to learn ... nothing! But can often be pushed in the right direction by a determined patient.

    It does seem evident from the thread as its developed that you are under-medicated.

    Why do you take the alternating 75/100 mcg dose of Levo? Have you tried going onto a higher dose? Did it not agree with you? Or has it not been offered? Time to see your doc. Do you think you can put together a note of what outcomes you want from the contents of this thread? If there's stuff missing just let us know and we'll do what we can to fill in the gaps.

    And do start taking a good quality Adrenal supplement - that alone will help. Especially if you've had a rough couple of years on top of the thyroid problems.

  • Thanks Humphrey hugs from me :) I really appreciate the time an advice I'm getting I was on 75 ths went to 16 put on 100 ths went really down but t4 went really high never been tested for 3 so doc said alternate an we will c what blood shows next time I think he thinks it's a game an he wants to win . But I will be ready this time I go thanks again

  • H can you reccomend a good adrenal support for me :)

  • I can't really recommend a good adrenal supplement. Sorry. We're not allowed to name the names - or the suppliers - on this forum. Adrenal support comes in vegetarian and adrenal extract form, so there's maybe that decision to make too. If you look on A well-known mail seller's website you'll see a range.

  • Ok thanks anyhow. Il have a good look . Thank you

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