Please help, newly diagnosed

Hi all

I was really run down 4 months ago and was told I was B12 deficient (113) and had an injection. I returned to GP a couple of weeks ago and had my second injection. I had my bloods done again and was told that my TSH levels were 21.77 and I needed to start Levo for the rest of my life.

I'm constantly exhausted despite taking the medication now for a couple of weeks and I find it hard to think and concentrate.

Does anyone know how long it will take until I feel better. I slept 31/48 hours at the weekend and I am napping all the time which is unlike me

28 Replies

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  • > ... how long it will take until I feel better.

    Depends on deficiency of ferritin, B12, D and folate

    Depends on which procedure is used:

    1. Starting dose increased automatically in a few weeks. Early this morning a read a patient getting 50mcg for the first three (3) weeks, then 100mcg for four (4) weeks until control bloods

    2. Starting dose 50mcg for say six (6) weeks and increased first after the bloods. If at all: Bloods may be "in range" but symptoms remain. If at all: Patient is forgotten on starter dose.

    (Treatment maybe continued: drive.google.com/file/d/0B9... )

  • MzChapperz Levo isn't a quick fix, it doesn't work like a paracetamol for headaches. It's going to take a while.

    What dose were you started on? I'm guessing 50mcg (maybe 25mcg, hopefully not). Is your next blood test booked for 6 weeks after you started the Levo. What should happen is:

    1) You start Levo

    2) You have a re-test 6-8 weeks later to check your levels of TSH and FT4 (and rarely FT3)

    3) Depending on the results of the new test your dose of Levo is increased

    4) You have a re-test 6-8 weeks after the dose increase to check your levels

    5) Dose adjusted again if necessary

    Etc, etc until your symptoms are alleviated.

    All this takes time and you need to reach your optimal dose of Levo before you will feel well.

    You need your TSH to be 1 or below or wherever it is needed for your FT4 and FT3 to be in the upper part of their ranges and you to feel well.

    Many members find their GPs only dose by TSH and once it reaches somewhere in the range they are satisfied regardless of how you feel. Be ready to fight your corner if your GP does this and push for a dose where you feel well.

    Always get copies of your results, you are legally entitled to them under the Data Protection Act 1998 and your surgery must provide them if you ask for them. You can always come back with your results, including the important reference ranges, and members will comment.

    With regards to your B12 at 113. You had one injection about 3-4 months ago and you've had your second injection 2 weeks ago??? Is that right? If so that is shocking, negligent even. Anything under 500 can cause neurological damage, but as low as 113 is serious and you should have been on something like 3 injections as week to start with then monthly (which is what has happened with my friend). Ask your GP to check for Pernicious Anaemia. You should be aiming for a level of 1000 which is what the Pernicious Anaemia Society recommends.

    When taking B12 in whatever form, we should also take a good B Complex to balance all the B vits.

    Ask your GP to test Vit D, ferritin and folate for you. You are probably deficient in all these as well. If he won't test them then you can get them done privately, come back and ask for details if your GP won't help.

  • When the GP discovered I was b12 deficient it was April and it was 113. I had one injection then because I wasn't anaemic and told to go back every 3 months for further injections.

    In terms of the thyroid I didn't know this but in April my TSH levels were 16.47 and t4 was 7.5 but they treated me at this time for the b12

    When I went back a couple of weeks ago my tsh level had risen to 21.77 and t4 8.9 and I was told then to go on Levo

    However, I just so exhausted, I have a stressful job and find it hard to concentrate and stay focused. I'm exhausted today although I've had 14 hours straight sleep and a 2 hour nap yesterday afternoon.

    I went back to my go last week due to the sheer tiredness and he gave me a perscription for sertraline. I don't know what to do

  • Are you depressed? I mean really depressed, not just fed-up because you feel so tired and ill. If not, don't take the sertraline. Doctors love to prescribe it rather than treating the thyroid correctly. You have to be very vigilant about that. Know how it's supposed to be done, and make sure your doctor does it that way, rather than prescribing antidepressants - for which he gets funding points, or whatever, that he doesn't get for levo!

    Besides, Sertraline will not stop you being tired. It could even make you more tired.

    So, you started levo two weeks ago? At what dose?

    In four weeks time, you should go back to your doctor to be retested. Make sure that, at that time, you get an increase of 25 mcg.

    Six weeks after that, you go back to be retested again, and insist on another 25 mcg increase.

    And, you continue like that until you are well.

    And, each time you have a blood test, you ask for a copy of the results - with the ranges.

    When you go for your next test, make sure the appointment is early in the morning, and fast overnight - just drink water. And leave 24 hours between your last dose and the test.

    Ask your doctor to also test vit D, vit B12, folate and ferritin, because these all have to be normal for your levo to work.

    They may put up a bit of a fight with all this, because they hate treating hypos correctly. But, you have to learn to stand your ground, if you want to get well. You know what you want, and you intend to get it.

    So, what do you do next? You take your levo for the next four weeks - it's too early to increase yet, anyway, you can only do it every six weeks, and only by 25 mcg - and then you go for a test, get all the tests done, and get a copy of your results. Post them on here, and then we'll tell you what else needs to be done. OK? :)

  • Sertraline! Don't do it unless you are really depressed. At least 80% of people who take this will lose their sex drive completely (I was one of those!). I've been on and off antidepressants (the SSRIs) for years and years and I will never take them again. The side effects to come off of them are terrible and a lot of people cannot tolerate them so go back on the drugs. They're bad news.

  • I was put on 50mg to start with and was advised to return in 6 weeks

  • That is good news! Some people are started on 25mcg or 50mcg of levo and then left to rot for months.

  • b12deficiency.info/signs-an...

    Please please read the above link to understand the seriousness of B12 deficiency. Check through the neurological symptoms in the list - do you have any ? If so you need to be speaking to your GP about finding out why your B12 was so low and you may well need more regular injections until your symptoms subside. Have you been tested for Pernicious Anaemia ? Do you have stomach problems ? Are you taking any other medications in addition to the T4/Levo ?

    Further testing for B12 whilst supplementing is of little or no value as results will be skewed. do not give your GP the opportunity to say all is well with your B12 and that you do not need anymore. Believe me it happens.

    What your GP does not know about B12 can harm you - so ......

  • It is such a slow process to start to feel well again, if at all unfortunately, depending on dosage to correct deficiency. A lot depends on your doctors management of you and I would advise strongly if you are still feeling cr*p in a year, yes, a year, ask for an endocrinologist appointment for management. After 25 years on treatment my endo was astonished that I had never been referred to them in that time except for voice problems which, obvious to me but fell on deaf ears, I needed levo increase. My latest endo appointment has transformed my treatment and people are saying how wonderful I look, in other words not knackered! You are in a vulnerable state at the moment MzC but read everything you can about thyroid underactivity, knowledge is power, seize your journey to health and take control. Don't be fobbed off and learn about reference ranges in your fight to achieve optimum medication. Good luck.

  • Thanks for you responses.

    I wouldn't say I am depressed, just fed up that I am always sleeping or need to go to sleep. I haven't taken the sertraline yet.

    I'm just so fed up and hen I wake up I feel like I'm recovering from a hang over but I haven't drank any alcohol.

    I just want to stop feeling exhausted all the time.

    Do you think the I tiredness is more related to my b12 than thyroid?

  • Low B12 can cause fatigue (amongst it's myriad of symptoms) but fatigue does go hand in hand with hypothyroidism. Low ferritin can also cause fatigue. It's all connected which is why it's so important to get all those essential vitamins and minerals check and optimise the levels.

  • Anti-depressants such as sertraline are not a substitute for good thyroid treatment. As I know from personal experience, many ADs have show-stopper side-effects because they are substances which are foreign to your body chemistry. On the other hand, the body knows how to handle T3 and it is a highly-effective antidepressant when your nutritionals are normal.

  • I could hardly climb the stairs and was falling asleep after i had been up an hour.Do not drive!

    Some symptoms went fast on levo but it was about a year before I was mostly symptom free. It is not a quick fix.

    When posting blood results in future always show the range which is in brackets if you want comments. Different labs have different ranges.

  • What dose of levo are you on? If the doctor prescribed you a small dose and did not tell you how to increase, you could well feel worse. When you start adding exogenous hormone, that pulls your TSH down and causes your endogenous thyroid level to decrease, which requires more exogenous hormone. This is the "sawtooth" effect. The Abbott recommendation for T4-only full-replacement dose is 1.7mcg/kg body weight - very approximate. If you multiply 1.7 times your body weight in kg, and find the Abbott recommendation is a lot more than your actual dose, then you probably need to increase. But, since the half-life of T4 is fairly long (~1 week), you don't want to increase real fast. Also, if you have been hypothyroid long enough to affect your adrenal function, increasing fast can put you into a hyper state before you become euthyroid.

    Proper operation of your thyroid system also depends on a number of things, including your nutritional levels, whether you are able to efficiently convert T4->T3, and whether you have Hashimoto's. The doc should have run the full panel TSH/FT3/FT4/rT3/TPOAb/TGAb, where the TPO and TG antibodies would have told him if you have Hashi's. Hashi's is an autoimmune disorder and the leading cause of hypothyroidism. It has its own set of symptoms/problems. Unfortunately most GPs ignore the effect of Hashi's on their thyroid patients, as they don't have an understanding of environmental medicine.

  • I'm getting quite confused by some of your responses.

    E.g when you talk about range my TSH is 21.77 (0.4-4.2) - is this what you mean?

    I've been started on 50mg of levothyroxine

  • The numbers in brackets are what that lab refers to as their reference range.

    95% of people who live in the lab reference area and don't report having symptoms should fit into that range.

    Lab reference ranges vary from lab to lab due to the instrumentation used and the guidelines they work under.

    It is common with some NHS lab reference ranges to not adhere to good international medical practice as the NHS also calculates the monetary value of treating people at the borderlines of ranges.

    The number you have 21.77 means you fall well above the top of the reference range. This means you have a medical condition and need to be treated. In this case you have hypothyroidism.

    One of the things you need to do is not worry so much about not understanding what people write immediately but look again and again at people's replies to your questions. This is because your vitamin B12 deficiency and hypothyroidism mean you have brain fog as well as fatigue so things are just a lot harder.

  • That's right MzChapperz , the range is usually in brackets like that. For TSH we're looking for it to be at the bottom end of the range, mine is usually below or undetectable.

    You will probably have an increase to 75mcg Levo after your next test.

  • MzChaperz,

    21.77 is the TSH result. (0.4 - 4.2) is the TSH lab ref range.

    50mcg is a starting dose. Your GP should retest your thyroid levels in 6-8 weeks as dose will probably need increasing. Make sure you take Levothyroxine after the blood test which should be a fasting (water only) test early in the morning when TSH is highest. Most people will feel well after TSH is 1.0 or lower but symptoms may lag behind good biochemistry by a couple of months.

    _______________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Ive started taking cod liver oil capsules and a general multi vitamin but I'm unsure if I should be. Any advice please?

  • Multi-vits rarely give you enough of any one vitamin or mineral - so best to follow the advice above - about which ones to have tested and to supplement if low. Put results with ranges in a new post for people to comment or advise. Your GP's idea of what is fine/normal is rarely ours here on the forum. :-)

  • Thanks

  • Did you manage to look at the link I posted higher up this thread ?? If you did then you will see that depression is included in the Signs and Symptoms along with MANY other neurological signs and symptoms. B12 deficiency is NOT a vitamin deficiency - when the result is UNDER 500 - it becomes a neurological one over time. Alzheimers/Parkinson/MS/Dementia - all linked to LOW B12 and often mis-diagnosed in the early stages. When B12 is low the sheath that protects all nerves is damaged and that is when things become more serious. I should know - it happened to me.

  • First of all your B12 needs treating properly. You should have been given six loading doses over two weeks, and then re- tested to see how well your body is holding onto the B12 you've been given. A level of 113 is very low. As you have a thyroid problem too your level needs to be nearer 1,000.

    Are you vegetarian or vegan? Could this be the reason your B12 is so low?

    Also, as your TSH is high, have you had a further blood test for thyroid antibodies? Both low B12 and thyroid problems can be autoimmune conditions, which means your body is attacking itself.

    Please ask for a referral if your GP isn't following the correct guidelines. An endocrinologist for your thyroid, and a haematologist for the low B12.

  • I would suggest, if possible, for next appointment you take a supportive friend or family member.

    To help get across how unwell you are, and to politely, but firmly press GP for a plan of treatment to address you very low B12, plus further blood tests for Vitamin D, folate, ferritin and both thyroid antibodies

    Also perhaps referrals on to endocrinologist and haematologist.

    If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

  • Hi and welcome,

    This site is your first step to getting better. Well done.

    Do not take the antidepressant! Get optimally medicated, read books by Mary Shomon, Dr Datis Khazzarian (awesome) and change your lifestyle.

    Levothyroxine is just T4 replacement. A lot of us take Natural Dessicated Thyroid(NDT) to feel better as this gives you T4,T3, T2 and T1 which is what we need. A lot of people don't convert T4 to T3 and will ever feel better on Levo. We buy our NDT from abroad as it is very cheap there. We can give you more info if Levo doesn't work for you. You are on a starting dose only so will be a while before you start to feel better and you will need dose increased.

    GP's do not like to prescribe as it is expensive but are very happy to dole out antidepressants and various other medications we dont need!!!

    Try and get your thyroid antibodies tested. You need to know if you have Hashimotos Thyroditis. Very common. It is an auto immune disease which effects the thyroid.

    In the mean time try going(absolutely) gluten free, you may feel a lot better in a lot of ways of you are Hashimotos. Energy should be better. Worth a shot. I could hardly exist before I switched to NDT and went gluten free.

    You'll get a lot of help here.

    Good luck.

  • I've been back to my go today. He is going to test for vit d, folate etc. He says that in May my b12 had gone up to 163, which he says was normal range. He says that now I have had an injection the reading will be in the thousands so there's no point testing that again. He talked about getting my new blood results and then sending me for a MRI scan?

    He says he would have hoped I would have started to feel better now but last week he said I would feel bad for some time, I'm so confused. I've slept most of the weekend away(my bank holiday) and I went out with odd shoes on on Saturday!

  • 163 is not normal. It is very low. You need proper B12 loading doses or you will never get better. Your body will not be able to absorb the t4. My GP would only give me one injection so I bought some myself from Amazon Germany and with the help of a nurse friend learned to self inject. It was a lot easier than I expected. I just refused to sink any lower.

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