Tsh 59 newly diagnosed

Was diagnosed hypo with a tsh of 59 11 weeks ago. Started on 50mcg if Levo and felt great for about 2 weeks... Then crappy again. 6 weeks later tsh was 9 so they increased me to 88mcgs. Again felt great for about 2 weeks, now I fell horrible.... Zero memory, weight gain, dry scalp, emotional.... Could it be possible I still need more? I would have thought that if I dropped to 9 with 50mcgs then going up to 88 would bring me down to normal. They also found 4 nodules, 3 approaching 9mm. Should I request a biopsy? I want to try to have another baby in the next month or so but hear I should wait. I am 34.

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  • The TSH is the Thyroid Stimulating Hormone which is produced in the Pituitary Gland. Its purpose is, as its name suggests, is to stimulate the thyroid to produce more thyroid hormones. If the thyroid does not respond, the TSH continues to rise. So it is useful for finding out if something is going wrong.

    Your TSH is always the first thing to be affected by thyroid treatment because the pituitary is VERY sensitive to changes in thyroid hormone levels, hence the sudden drop.

    This does not, however, reflect the level of hormone reaching the rest of your body, which takes a lot longer. So it takes more time before you start to feel better, which is why, once the initial diagnosis is made, it is not helpful to try to get the dosage rigt by re-measuring the TSH. Another point is that as the TSH gets lower, smaller changes in TSH level will reflect bigger changes in your true thyroid status. So, when it was 59, it could drop very quickly down to 9 but after that, it will drop much more slowly yet you will notice more effect in your body. You will not really feel much better, and often you will feel well for a while and then go downhill again.

    There is no 'standard point at which you will feel OK but anywhere between 0.5 and 2.5 seems to be the most common, with most people needing their TSH to be below 1. Mine was 1.4 and I was still very, very ill and only now that it is 0.01 do I feel OK.

    There are many other things to consider too, you may de deficient in vitamins and minerals which stop you feelong better. B12, D, iron, folate, ferritin, are all important and can often be low when you are hypothyroid. The main TUK Website is very helpful, do read all you can to understand your condition.

    thyroiduk.org.uk/tuk/treatm...

    Advice you have been given to wait to have a baby is very well-founded. Hypothyroidism if not properly controlled can lead to many problems, and for your own wellbeing and that of your child, you need to get yourself on the best treatment first, because you want your baby to be healthy and go to full term. Fot the first few months your thyroid levels are the Baby's source of thyroxine and good levels are important for baby's developing brain. Insufficient thyroid hormones can affect baby's development after birth too. This is why the advice is to wait until your levels are stabilised. Do please make sure that whoever is treating your hypothyroidism is aware that you want to have a baby as soon as possible, so that they can also make sure that your thyroid treatment is increased to cover the baby's needs once you do get pregnant.

  • Thank you so much for your response. Incredibly helpful!

  • Thank you for this link, very useful - the amount of B12 per day is not stated, have you any recommendations for this?

  • Sorry you are still feeling rubbish, 88mg is quite a low dose so I would definitely go back to your Dr and ask him to up it. Experts on this forum will be able to give you more information, but a TSH of 9 is still too high.

    Don't be worried about bothering your Dr till you get the answers you need. Have you asked about having a biopsy? Make a nuisance of yourself if you have to, because you need to feel well soon so you can get on with your plans for a baby!

    My TSH is. 2 but still feel unwell due to developing aenimia & a low b12 count. You should get these tested as this is very common. Again, more knowledgeable people will advise you on what tests to ask for, so keep in touch with this forum. You are not on your own.

  • Thank you for your support! I think I'm out of my mind at times!

  • The experience of getting better for a short while and then going backwards is well known and people on this site can tell you more. You are not on your own!

    You most likely will need a higher dose but doctors build up the level while motoring your TSH level. They will increase the amount of Levo each time and do another blood test (6 week cycle normally) until the TSH is 'normal'. TSH is not a very good indicator once your TSH gets down below 5 as that is regarded as 'normal' but the majority of us do not feel well until TSH is much lower and often below 1. Most doctors don't understand that as they are trained to aim for 'normal' which is where 90% of people are. However we are the 10% who are not normal and our actual health is a better indicator than the TSH test. You will need to push for more Levo until you feel well. If your TSH gets below 0.5 and you are still not well, there are other avenues to pursue but this hopefully will not be the case. It takes patience, lots of it, so be prepared to balance your lifestyle while you work towards getting better. Pushing yourself too hard each day does not help. Use the support of this forum (full of people who really understand and care) and make sure those close to you understand that this will take a while.

  • Thank you for your helpful advice! This forum is wonderful!

  • A lot of people experience ups and downs as they start on Levothyroxine therapy. One theory that I think might well be correct is that before you are diagnosed your thyroid is trying really hard (but failing) to produce enough thyroxine. Once you start on Levo your poor tired thyroid takes the opportunity to 'take a break' and produces less than it was managing, so you then need more replacement hormone. 88mcg is quite a low dose. Most people start on 50mcg and build up. 59 is a high TSH - I was diagnosed hypo with only TSH=7.5. Many people take 125mcg but frequently up to 250mcg. It doesn't seem to be a linear relationship at all between TSH, Thyroxine and symptoms, more like a logarithmic one. For example 50mcg reduced my TSH from 7.5 to 1.2 but I still had just as many symptoms (possibly more) than I had originally. Increasing to 75mcg took my TSH down to 0.2ish and I now feel quite a lot better.

  • Thank you for answering the dose response relationship. That has helped ease my mind for certain!

  • Hi eeng, how did you manage to get diagnosed with hypothyroid with a TSH of 7.5 when my GP didn't diagnose me with hypothyroid with a TSH of 8?

  • Hi eeng, also, how long taking 75mcg before you felt a lot better?

  • I noticed the difference within 2-3 days and continued to improve over the next week or 2. This summer I can actually go out in t-shirt and feel sweaty on a hot day. Last year I wore at least one warm top all summer.

  • Thank you eeng. I felt better taking 30mg Naturethroid first week or two, then seemed to take a backward step feeling anxious and fatigued and despite increasing to 70mg, the more energetic feeling I experienced the first couple of weeks has not yet returned even after 2 weeks of 70mg. I have been through a particularly stressful period. I did read on another posting that:

    '‘before you are diagnosed your thyroid is trying really hard (but failing) to produce enough thyroxine. Once you start on thyroxine your tired thyroid takes the opportunity to 'take a break' and produces less than it was managing, so you then need more replacement hormone’.

  • Ideally your free t4 will be at the top or just above your lab range, this us how much thyroxine you have in store. It takes a while to find the right level and then it can take months after that for you to feel the benefit because every cell in your body has been affected.

    Having your ferritin, folate, vitamin s, b12 at optimum levels is a must too. When all is good and you become pregnant it is IMPERATIVE that your dose us increased straight away!

    I would guess that you need a few increases yet. Hang on in there.

    Sue

    thyroiduk.org

  • I go back next week and will make it a point to discuss the pregnancy plans right away! Hopefully he take a look and treat me more aggressively.

  • I hope it works for you Michelle, but don't be too disheartened if your GP doesn't understand. They often don't knowing about thyroid and stick rigidly to test results. If that is the case there are things you can do, like showing him/her Dr Tofts book Understanding Thyroid Disorders. Do report back on the result of your consultation. Good luck

  • My GP couldn't be bothered to spend a few minutes with me let alone read a book at my request.

  • I had a multi nodular goitre, the gland was full of cysts, in the end I had the gland removed, I was 24 and haven't looked back. Although it did take about 6 months or so to get my levels sorted

  • I have been taking Levo for over 20 years and feeling better, but always feeling bloated and rundown at the end of the day dry scalp and other issues, as well, so that Levo works not for everybody. Feeling bloated can be a range of things as explained in other replies, but also if you have been taking antibiotics and not having recovered the intestinal flora can have other effects.

    As your body needs this flora for the absorption of many vitamins and minerals, as they're used to convert the into useful nutrtients for the body, all which in turn makes the wheel turn.

  • Michelle,

    Make sure your GP is aware of your plans to have a baby. NICE guidelines recommend TSH should be in the lower range of 0.4-2 and FT4 in the upper quadrant of range. When your TSH has stabilised your Levothyroxine should be increased by 50mcg to ensure good foetal development and to avoid post partum thyroiditis. Thyroid bloods should be tested every 4 weeks during pregnancy.

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

    hypothyroidmom.com has useful blogs on hypothyroidism and pregnancy. Scroll down to find various links.

  • Please inform yourself well as being pregnant and hypo is a very delicate situation for you and for baby

  • estrella or clutter, do you know how long I should be stablized in normal range before conception? That is what I am worried about. Beleive me, I won't even consider it an option until then...I hoping this will help my doctor understnad I need to feel better as soon as possible....I have been feeling so awful for 6 months now.

  • Hi Michelle,

    Welcome to Healthunlocked, you will find some reallylovely and helpful people here.

    Can I please reccomend you also check out Thyroid UK's main website, as well as the forum here on Healthunlocked - the main website is : thyroiduk.org.uk

    As far as having a baby is concerned - apart from the health concerns about having a pregnancy whilst your thyroid has not sellteld to treatment, just think how rubbish you feel now, and whether you would have the energy to look after and enjoy a newborn?

    I would really reccomend waiting to get your thyroid levelled out

    How long this will take? - This can easily take 6 months, or a year to get levelled out - it is a process - I have been Hypo for 15 years+, and it took them about a year to find a good dose, they kept it at that since but recently it changed again

    some tips:

    1 - trust your body - if you feel it is going downhill ( and you do not have the flu etc) then go back to the docs - there will be a lot of back and forth at first, and getting the levels right will take a while, that is normal

    2: take the correct tests - as mentioned here before, TSH is only really useful in the same way as waving a big flag saying "there is something not right here" - it is not sensitive enough to let you know how well you are doing on the meds ( I assume you are on levothyroxine?)

    make your doc do Free T4, Free T3 and rT3 tests - it would also be useful if he did Thyroid antibody tests - this will not change your meds, BUT if you have thyroid antibodies in large numbers, it is worth your doc keeping an eye on you as this is an autoimmune disease version of Thyroid illness, like Grave's disease, and one autoimmune can lead to another, and as I am sureyou can appreciate - the quicker he treats the next one that pops up, the sooner you will feel better.

    3. WHEN & HOW to take meds - now I only found out about this thanks to Louise at Thyroid UK, recently, and it made a BIG difference to the amount of thyroixine I needed ( went from 150 to 100) just by following these simple rules, that my doc should have told me, but he got it wrong:

    * - Take your Thyroxine at least 30 mins away from any food (NO FOOD)

    * - Take your Thyroxine at least 4 HOURS away from any Calcium or Iron ( i take mine at bedtime for this reason, it is over 4 hours since dinner and at least 4 hours to breakfast)

    * - Take your Thyroxine with plenty of water

    * - Ensure that you have enough co-factors to make the Thyroxine work ( These include, Magnesium, Zinc and Vitamin C and Vitamin D3), and make sure they are the right kind - there are many posts here about what types to take (who knew there were 4 types of Magnesium suppliment, and 2 of them are useless for Hypothyroid patients!)

    Best of Luck, try to be patient with your doc as he tweaks your dosage and be confident in letting him know when you do not feel right - you know your body best.

    Big Hugs,

    M

  • Is it important to take Naturethroid with plenty of water?

  • Yes, CC. Slosh it down with a full glass of water so it's washed into the gut for absorption.

  • Thank you Clutter, but would the water push it through the stomach into the gut?

  • CC,The water and stomach acid will break down the molecules for the gut to absorb.

  • Hi Clutter, I thought that water (though I do take some water with the Naturethroid) diluted stomach acid obstructing its digesting capabilities? Obviously I'm not coming from a biologically well informed place, just is what I thought : ).

  • You may be right CC, but the other reason to wash tablets down with plenty of water is to prevent tablets sticking in the gullet and causing ulcers.

  • Hi Clutter, yes, that's why I need to have some water. I do crunch the naturethroid as trying to follow CM3, just didn't want to dilute stomach acid too much, but thought there might be a particular reason for taking thyroxine with 'plenty' of water.

  • CC, a member wrote to RLC about chewing NT and was advised it is designed to be swallowed whole with a glass of water.

  • Hi Clutter, I was just following direction re: Circadian T3 Method: 'The T3 needs to be direct, NOT slow-release. Turns out that NDT can work for this, too, because of its T3 content, and it’s best to swallow it for the early morning dose to release the T3 more immediately. If you have HARD tablets, chew them up first.' stopthethyroidmadness.com/t...

  • CC, chewing was recommended when there were problems with reformulated Armour some years ago. RLC designed NT to be swallowed with water.

  • For the circadian t3 method, is seems that the T3 needs to be released quickly, hence chewing. Also according to the following link, chewing Naturethroid is recommended, article is dated 2010 mind you: stopthethyroidmadness.com/2...

  • Wow... Thank you so much. I so appreatiate your comments along with everyone else's. Never did I think do many people would reach out and help. I honestly am so relieved. I have tried done links and surprisingly I can't get on some as I do live in the UK. Well medicine is medicine... And I trust all your advice :) thank you.

  • Sorry for the typos--- that's what I get for typing in a phone!!! I meant that I do not live in the UK! So that means this page is honest ly that much more wonderful :)

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