I had an initial TSH of 159, last check got to 99 Has anyone any advice, will I be me again?

After 2 hospital admissions as I've found hypothyroidism as turned my migraines into a living nightmare, I've been hospitalized twice in two months, does anyone know how long levothroxine takes to work? I was started on 50mcg then after pleading got up to 75mcg with a have your bloods done in three months. The endocrinologist who saw me in emergency department said I should have been monitored much more closer and I'm back in clinic sadly my endocrinologist is now off sick. I finally saw a senior gp as my wonderful gp retired who was horrified ,put up the thyroxine to 100 in two weeks 125. I'm not feeling better, feel very low and the NHS does not make a sympathetic employer in this economy, yet until last year 15 years never had sickness as a issue needing monitoring, now can only be ill 12 days a year in 3 episodes punishment for needing an op, have not been off with infection in 3 years but had terrible gynecology last year breached a target waiting for surgery despite occ health and consultant letter that target couldn't bet met but treatment will cure and in good time, no support or adjustment just punishment had a capability hearing so humiliating, then hysterectomy at 36 and the joys of menopause triggered endocrine imbalance so been doomed. I think hypothyroidism should come under equality act for duration of some symptoms :( I'm single mum can't afford to lose my job over this x

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  • You haven't be well looked after :(

    My TSH came down from 107.5 to 0.16 in 4 weeks on 100mcg T4. Hopefully yours is falling as you are now being properly medicated and you will start to feel better in a few weeks.

    It may be worth asking your GP to check your ferritin, vitaminD, B12 and folate. These are often deficient or very low in range in hypothyroid patients and they really need to be high in range for one to feel well. When you're deficient and low in range symptoms experienced can be shortness of breath, low mood/depression/anxiety, muscular cramps and pain, joint pain, fatigue and lethargy etc. Remember to ask for lab reference ranges every time you get test results.

    I was under the impression that reasonable employment accommodations had to be made for all chronic conditions under the Equality Act webarchive.nationalarchives...

  • For your tsh to even get to those levels someone has been negligent in your care

    I assume your hysterectomy was because of heavy bleeding /endometriosis which was not correctly diagnosed and linked to hypothyroid

    the plain fact is it takes many months indeed to get well from normal hypothyroid with a tsh of just 4 never mind the levels yours are still at

    has anyone bothered to check your

    ferritin

    folate

    b12

    calcium

    vit d3

    magnesium

    zinc

    i will bet at minimum your ferritin and folate are on the floor and you need iron and vit c

    and until they are both pushed up to halfway in their ranges the levthyroxine cannot be properly utilised

    you need t3 meanwhile but for your employer to not recognise your very serious ill health and need for sick leave is totally disgraceful and if they try to sack you take them to an employment tribunal for unfair dismissal

    theres a very strict set ofvrules they have to adhere to and i know there will be powerful endos capable of defending you

  • It's ironic, but the caring profession has one of the least caring employers ever. Really feel for you, Nic. {{hugs}} My OH is an intensive care nurse. Her treatment when first diagnosed as hypo was appalling (and frankly isn't much better now). She's cut her hours right back and is now going to retire at 55 later this year. She didn't particularly want to but has now accepted that no one will ever make any allowances for her condition. As I'm sure you know only too well, if you turn up for a shift, you have to work your socks off, the attitude being that you should've gone sick if you weren't. But you can only go sick so many times...

    None of her colleagues appreciate or understand how ill and exhausted she often feels. Because she's always been a hard working and extremely competent nurse, she gets the crappest shifts and the poorliest patients to look after - every time.

    It sounds like it's still early days (to leave you on such a low dose of Levo when your TSH was so high is frankly criminal) and there's a good chance you will start to feel a lot better soon. But there are other medications (T3 for a start) that can be used if Levo doesn't do the job. There's a wealth of knowledge here on the forum - trust me when I say that many posters here know far more about thyroid problems than the average endo - so ask all the questions you need to!

    As Clutter has said, get your Vit D, ferritin and B12 checked and don't settle for a GP telling you the results are normal - post your results here for the real experts' opinion!

    Hope you feel lots better soon x

  • Welcome to our Forum.

    Another disastrous story, I just wonder when the situation will improve in the diagnosis and care of patients with thyroid gland problems. It does take time to get better but personally I think you should be given an increase every six weeks until you reach an optimum. I would ask if they would add some T3 to your T4.

    We have to read and learn as much as we can due to the fact of the guidelines laid down by the BTA and RCoP that levothyroxine alone is to be prescribed. False statements are made by them re other thyroid medications, probably due to the fact they are more expensive. How ill can they allow people to get?

    Female problems are an issue and there is a myriad of symptoms connected to hypo which are diagnosed as a stand-alone-condition, when it in fact is a clinical symptoms which they wouldn't know if they came face to face.

    One doctor, who died early this year, says in his book (not only him but some others too) that women often have unnecessary operations when it is their thyroid gland hormones causing the problem in the first place. Needless to say he was pursued by the authorities which I am sure contributed to his demise by appearing before the GMC for his views on which he was trained as a student doctor. Nowadays we appear to be diagnosed by computer, if we're lucky

    Our own thyroid gland produces T4, T3, T2, T1 and calcitonin (T3 is the driving force for our bodies, without which it doesn't function). Levothyroxine contains T4 which should convert to enough T3 but sometimes it doesn't convert to enough and the doctors are told to diagnose everything according to the TSH alone. Sometimes you are lucky and your GP will prescribe some T3, but reluctantly. There is also a natural dessicated thyroid, which they condemn by false statements, made by pigs or cows thyroid gland and it is more synergistic to our bodies than synthetic..

    Always get copies of your blood tests for your own records with the ranges and post for members to comment... Check for other important vits as stated previously. If you've had a recent increase in levo, and in six weeks if not feeling better get another blood test as you may need another increase. Take your levo with one full glass of water and don't take breakfast for 1/2 to 1 hour. I have heard it stated that calcium may interfere with the uptake so maybe avoid milk for 2 hours. Do not take levo on the morning of your blood test and have it as early as possible.Take your meds after.

    Many people do well on levothyroxine so give it a little time. It is unbelievable how unwell we can be but only the ones who've suffered can really understand. Your body has been deplete of thyroid gland hormones for a long time, clinical symptoms ignored, probably no blood test given or more notice taken of the point of the TSH.

    The only way is up and you will get the support on this site.

  • Oh my goodness! You must feel dreadful. My TSH went up to 68 and I honestly thought I had something that was killing me. The others have given you lots of really good advice, definitely get your vitamins & minerals checked. If no one will do it, look into blue horizon medicals who have an offer on for a private comprehensive test, although the NHS have a duty of care towards you and they should be testing you.

    Wishing lots of love and support, whatever you do, make coming on here a regular date!! The people on here are unbelievable and I wouldn't be feeling as well as I am without their help, support and understanding. You will get better but it will take time xx

  • Are you in a union? If not, join one immediately and get your rep on the case. Your employer is wrong. Good luck

  • Thank you so much, really appreciate reading the advice and support, I never thought I would feel so bad, the endocrinologist sold iodide as a quick fix, and the two that I saw one diagnosed hashimotoes the other more senior graves disease, I had antibodies off the scale way before any treatment. I will definitely get the other blood levels and start the supplement s asap as I'm sure as read most likely low. I'm so relieved to find people who understand, xx

  • I was in a similar position when i got first diagnosed but my numbers were much smaller athough the fatigue was terrible, my company sent me to occupational health, who informed my that I now have a disability according the the equalities act and my company started to be really helpful and told me they would support me till my levels were ok. Not sure they realised how long it may take and how erratic this illness is, but i am hoping they stick to bargain. I may have to give up my job anyway but at least they will try to find me a less demanding position, i will have to move house but it may be worth it. I work is sales so up at 5 and sometimes home past 6. Can be a bit too much!

    I wish you luck and the figures will improve it took 6 months for me to start feeling better, prob not what you want to hear but you will get there, keep using the site for support everyone here is really helpful and you will get some sound advice. I am guessing that you are a member of a union working for the NHS......it may be worth discussing your situation with them if things start to get heavy.

    I would also ensure you get all the other items everyone else has said tested.

    It will get better.......it will take time!

    Chin up.

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