Hi, was Diagnosed today with a TSH score of 150, doc said this was high put on levothyroxine 100mcg and got to go back in a wk ..

[Tigger215]

Is this normal practice, is that a high lvl for a TSH reading??! I know I feel rotten I just hope I shall start to feel

Better soon.. Any advice would be great fully received!

[Clutter]

150 is very very high. No wonder you feel rotten. GP may want to repeat the TSH test to check your TSH is decreasing. Don't take your Levothyroxine until after blood tests. You might want to ring and see if a blood draw is required. Unlikely you'll feel any better until it TSH is down to just above or just under 1. It took 4 weeks to bring my TSH down to 0.16 from 107.5 on 100mcg Levothyroxine.

You'll need thyroid function tests (TFT) until your TSH is low in range and Free T4 (FT4) and Free T3 (FT3) are in the top 75% of range. This may necessitate dose adjustments along the way, usually in 25mcg increments. TFT should follow 6-8 weeks after dose changes.

Your vitD, ferritin, B12 and folate may also be deficient or very low in range so it's worth asking your GP to test these too. Getting them high in range is beneficial to your wellbeing and aids absorption of Levothyroxine.

Get into the habit of requesting print outs of your test results with lab reference ranges as GPs are inclined to say tests are normal when they're very low or even below range.

Make sure to take Levo with plenty of water an hour before or two hours after food and drink and 4 hours away from calcium, iron or any other meds and supplements you may be taking.

Be kind to yourself and rest as much as you can. You're like a car struggling to run on empty at the moment.

[Tigger215 in reply to Clutter]

Thank you so much clutter, it's all a bit of a blur really, after years of not feeling well it good to have an answer, but wow all the information online is very confusing so it's hard to concentrate on what. Is relevant for me as I can't find things for high TSH readings.. Or maybe I'm just looking in the wrong place lol

Thank you again and I shall do all what you suggested, do have any suggested reading material as I really know nothing yet

[Clutter in reply to Tigger215]

Tigger,

Lack of concentration, inability to take in or retain information, forgetfulness all usually described by roidies as brain fog are a symptom of the illness. Don't worry too much about researching hypothyroidism just yet and use this forum to answer your questions, to vent and for support. At my worst I had to read things six times and would still forget the detail next day. I have so many duplicate bookmarks

For now, your priorities are to take your Levo and get your TSH, FT4 and FT3 optimally in range, get plenty of sleep (at least 10 hours) and rest, eat well and drink plenty of water and get your vitamin levels high.

RustyMary's post and advice are excellent. It's good to hear how well she's doing so quickly.

Excellent online blogs are:

thyroid.about.com/bio/Mary-...

stopthethyroidmadness.com and hypothyroidmom.com

[Ansteynomad]

Sounds like you have a sensible doctor there who knows that in people under 60 with no sign of ischaemic heart disease, it is a waste of time and money to start at 25mcg and titrate upwards in 25mcg steps.

Provided thyroxine is the right medication for you, you should start to feel appreciably better within the next month.

Have you been asked to go back and re-test in six weeks? You really need to do that to keep on top of things and make sure you are working towards the optimal dose.

[Tigger215]

He said I will have to have weekly visits with him, so not sure if that will be for re tests or what to be honest, I guess I will know more when I go back again for the first time, as I say it's all a bit of a blur, I find all the information online a little confusing at the moment but once I got my head around figures and things I'm sure I will understand a little better. The doctor was very sweet actually as I got very emotional so maybe that's why he limited the info he gave me

[shaws Administrator in reply to Tigger215]

Your GP will want to reduce your TSH as quickly as possible and that will be by blood tests, usually every 6 weeks, with an increase in levothyroxine till you feel much better.

Levothyroxine is synthetic T4 (inactive) which should convert to enough T3 (synthetic Active hormone). T3 is the most important hormone as it regulates everything in our body and is required by the thyroid receptor cells of which we have billions. Lack of it causes lots of symptoms, emotional as well as physical.

I hope you feel better soon.

[RustyMary]

Hi Tigger215, I'm about 3 weeks ahead of you. My TSH was 240 and T3 and T4 (I live in Slovenia where they test all three hormones) very low, about a tenth of what they should be. I was put on 25mg of levothyroxine for 2 weeks, and then it was upped to 50mg. In another week it will go up to 75. I'm going for a blood test on Friday (the first one post-diagnosis) to see how it's going.

I felt incredibly ill at the time of my diagnosis, and the doctor said he was amazed I was still walking around - though I had ridden my bike for 22km just a couple of days before! I was told to rest and take time off work, and indeed, it would have been impossible for me to work or do anything else for the first week or so. After about 4 days, though I still felt very poorly, I had some glimmer that I was beginning to feel a little bit better. A week in, and I could definitely see an improvement. It's been 2 steps forward and 1 back, though, as I have days when I feel a lot more like myself, followed by days of complete exhaustion. It has felt like moving back into an old house that has been closed down for a long time - everything needs time to start working again, and doesn't function properly at first.

Now after 3 weeks I have been able to go back to work, although I am very grateful that I work for myself and don't have a big workload right now, as I still get terribly tired. But I can see that I am going in the right direction. I'm trying to think, not what I was like yesterday, but what I was like one or two weeks ago, and then I can see that there has been a massive improvement. If that keeps up as I hope it will, then another 2-3 weeks will see my functioning a lot more normally.

There is vast amounts of information on the internet, both here and elsewhere, and people are really helpful. However, remember that people who get better don't need to post much on forums, and that many people who post have really horrendous problems with diagnosis, or other complications. Around 80% of people on levothyroxine do very well on it, and I hope that you and I will be in this category. I had some very bad nights from reading too much and then worrying that I was never going to feel OK again or that I had done some permanent damage from the hormone levels being so low. This may yet be so, but the answer to everything, for me and for you, at the moment, is to rest and get some thyroxine back into our systems. It's difficult enough getting used to the idea of having a serious illness and feeling awful - there's no point in getting further stressed by worrying about what might yet be to come. I am trying hard to think positive and keep repeating 'Every day in every way I'm getting better and better' (being someone who believes that positive thinking really works). There will be time in the future to cross other bridges if they happen, and it is great to know that this site and others will be there to help if need be. In the meantime, you are very sick - sleep, rest, try not to stress, be patient for improvement, and keep taking the tablets!

[Clutter in reply to RustyMary]

Excellent advice, RustyMary. It's good to hear how well you're responding to medication so quickly.

[eeng]

I hope you start to feel better soon. I felt 'below par' with a TSH of 7. You must have been feeling dreadful on 150. There is a symptom checker on this site somewhere and Wikipedia has a list too, so you can see what improvements you can expect to feel in as your medication kicks in. There is a book 'Understanding Thyroid disorders' which can apparently be found in chemists for a fiver, or on amazon. Some people find they don't feel really well until their medication is at the right level AND their vitamin and mineral levels (especially Vitamin D and B12 and iron) are above average. There is a lot of information on this site and people are always helpful when you ask questions.

[Tigger215]

Thanks for all the replies I really really appricate you taking the time to answer, rusty I look forward to a good day !! You are right there is lots of worrying information out there, and it is easy to get over anxious about things I suppose, let's hope that we will feel better sooner rather then later. Thank you shaws, I'm glad to have your help explaining things! And thanks eeng i

Shall be sure to look up that book, to see if it can help!!

[Heloise]

Hi Tigger, that is a shocking number. I hope the standard treatment will work well for you. It doesn't always, though, so keep learning what you can about your condition. Keep track of your tests and watch your own progress. There are good websites to help you and for the most part they do agree with each other. They do not agree with conventional medicine at times.

You are being placed on a synthetic drug whereas a natural hormone from porcine had been used successfully for decades, i.e. Armour, Erfa, etc. This website has many links to answer your questions and is easy to understand.

thyroid.about.com/od/thyroi...

[TSH110]

Hi Trigger215 - you must have been feeling really bad that is a very high TSH reading. It will take a while to feel better but quicker than I did, cos I had bad heart pains my dose of Levo was upped very slowly and it took 9 mths before I felt reasonable again. With your higher dose it will be much quicker! I am amazed you can get out of bed let alone go to work! I really struggled and kept working it was tough but stopped them being able to get rid of me outright - they were not a nice employers they managed it in the end but I did get my redundancy and have never looked back. I hope you soon feel loads better - take it steady and good luck

[Tigger215]

Thanks heloise will certainly have a look they the website and learn as much as I can. tsh110 I hope your enjoying your redundancy and am

Feeling much better yourself! With no more heart pains, : )

I look forward to no more pains and aches and tired ness and skin that looks normal, these are exciting things! And no swelling would be superb!!!