Life after diagnosis?

[Redroz1e]

I'm fairly recently diagnosed with hypothyroidism and have had my levothyroxine upped as I wasn't feeling any better. I've been lead to believe that I may never feel well again which is quite depressing! Can anyone tell me if that's true please?

[humanbean]

Who led you to believe that, just out of curiosity?

Most people (about 85% of sufferers), once they get up to the dosage they need, do perfectly well on Levothyroxine. There are things you can do to help yourself as well.

Can you tell us things like how long you felt ill before being diagnosed? What dose have you been started on? Have you been advised how to take Levo to get the best out of it? Do you know the conditions you need to get the best results from testing? Has your doctor told you to go back for blood tests 6 weeks after starting your current dose?

[JGBH in reply to humanbean]

Hi humanbean,

I have never been given any advice about how to take thyroid, apart from taking it in the morning with water before breakfast. Am wondering if it should be taken an hour before breakfast? Grateful for any useful information. Am taking 100 mcg and 75 mcg on alternate days.

Thanks.

[humanbean in reply to JGBH]

Leaving it an hour before eating and drinking is the recommended thing to do. I gave further detail in a post below to Redroz1e.

[JGBH in reply to humanbean]

Excellent! thank you so much humanbean...

[Redroz1e in reply to humanbean]

My GP!

I've felt ill for years. Hot all the time though if I felt cold I was really cold. Not sleeping so waking tired every day. Putting on weight and unable to lose it. Hair loss. I've had physio for knees, elbows and back. Vitiligo... All sorts of things and though I've been tested many times my Tsh has always been borderline so nothing was done until I practically begged my doctor who put me on 59mcg. I was told it would take up to 9 months before I felt better but I didn't so I went back and was retested for the first time at which point it was increased to 75mcg. I'm due for another test next week but I asked if I would ever feel good and she said that some people never feel how they used to. 😔

[humanbean in reply to Redroz1e]

Okay... Your GP sounds incompetent on the subject of hypothyroidism and Levo treatment. Sadly, this isn't uncommon.

Starting you on 50mcg was reasonable. The idea of leaving you to rot for 9 months is appalling. Once you start on a dose of Levo you should take it for 6 weeks. Then do thyroid function tests (TFTs). Assuming that the numbers are not ideal you should be prescribed 75mcg. Wait another 6 weeks, do more testing, add another 25mcg if necessary. This cycle should be continued until good results come back from testing. You should never have been left on a starter dose for 9 months!

Levo can be taken at any time that suits you, although most people take it either first thing in the morning or last thing at night.

A quote I pinched from Clutter :

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

When blood tests are booked, please follow the following routine :

1) Book an appointment as early as possible in the morning to get blood taken. Before 9am if you can possibly manage it.

2) The day before the blood is taken : 24 hours before the blood test take your levo for that day (even if it is a different time from usual). After about 10pm that night stop eating and drinking apart from water.

3) The day of the test : Don't eat or drink (other than water) until after your blood has been taken. Take your levo for the day after the blood has been taken.

The above shenanigans are intended to give you test results with the highest possible TSH, and the lowest possible Free T4. The TSH is what most doctors rely on to dose patients. If you want an increase in meds, or simply want to avoid having meds reduced, then following the above instructions is the best way of achieving it.

[JGBH in reply to humanbean]

Thank you so much for that. Yet NO doctor nor pharmacist have given any advice as how to get the best out of thyroxine!

[silverfox7 in reply to JGBH]

A few years ago when I was still taking Levo I was taken to one side by the Pharmacist to do a questionnaire for people on lifelong medication to see how much they understood about taking there medication and I passed with flying colour but it has obviously. End a concern. Whether it was because of folks taking huge amounts because they were taking it with breakfast or whatever and really it was an exercise to enable many to cut down on their dose and so help the NHS save money I don't know but I got the impression that many zPIL'S tell you how to take it but we aren't reading that! So wouldn't like to suggest either scenario as I haven't tried to find the info myself but I am pleased that people are addressing the problem.

[helvella Administrator Thyroid UK in reply to silverfox7]

And it proved not to be a "lifelong medication" for you...

[silverfox7 in reply to helvella]

Well I started not responding to it very well. I'd managed to almost get me conversion problem solved but not quite there and I'd been toying with the idea of NDT as I'd started my journey about 25 years before on that so had been following what people were saying re ones I could buy myself so made the change not long after. I knew from where I live I was never going to be given a little T3 to top it up so went back to my original method of treatment!

[Redroz1e in reply to humanbean]

Thank you for that information. I currently take all my medication in the morning when I get up so I will have to look at that. My next blood test is booked for Friday but unfortunately it's at lunch time. My work don't allow time off for appointments so I have them on my afternoon off and I'm already on an "improvement plan" for having time off sick. I'm not sure I will make it till then without something to eat but I will certainly try the rest of your advice and see what happens. I'm still getting to grips with the different parts of the tests TSH T3 T4. I think it's my T4 which is the problem but when you're given the details over the phone as I am I don't remember them! I will try to record them this time. I really do appreciate your help though I would have hoped that the doctor would give it, especially as I have been told not to google things!

[humanbean in reply to Redroz1e]

No, you definitely shouldn't go without food for all that time. I think I have read that really prolonged fasting has an effect on blood test results and I'm not sure if the effect is something that will work in your favour.

I would suggest eating and drinking as normal until after breakfast on the day of the test, drink water during the morning, and then delaying lunch until after the test. I have no idea if this is a good substitute for an overnight fast, but it is the best I can come up with, and I'm sure going without food all night and all morning will be a really bad idea.

I would suggest not taking your meds on the morning of the test until after the blood draw. It won't hurt to take it at the "wrong" time for the purposes of the test, just occasionally.

You would need to ask in a new post about being put on an "improvement plan". I'm fairly sure your employers can't punish you for having a diagnosed disorder and having time off sick as a result. You need to know your rights. I can't help with this, sorry.

I'm also not sure your employers can force you into taking blood tests at their convenience either. (But again, I'm not sure.) If you needed to get your cholesterol or blood sugar measured (for example), these have to be fasting tests done first thing in the morning. How would your employer handle that?!

Sadly though, doctors don't know about the effects of time of day on TSH results and insist that thyroid tests can be done at any time of day and fasting isn't required. They're wrong. But that doesn't help us.

Write a new post and ask about your rights when you are hypothyroid, sick, and still working.

[humanbean in reply to Redroz1e]

Oh, I forgot to say. You can ask your surgery to a printout of your results. You are entitled to a copy under the Data Protection Act 1998. You might have to pay a small fee for paper and printing costs.

If you could ask for copies of all the test results you've had since before diagnosis it would be helpful for you. You don't have to give a reason, but if you are asked just say you'd like to keep your own records.

You could also, before asking for paper copies, ask for access to your medical records and blood test results online.

Many surgeries still aren't set up to do this, but eventually they will all have to allow it.

You need to take proof of identity. You will be given information and various codes that allow you to register online. See what you can see. You might be lucky and get access to your records. If you don't, ask at the surgery why not.

[Redroz1e in reply to humanbean]

Great thanks I will do that 😀

[Hidden in reply to humanbean]

I also have incompetent docs at my surgery! (Well in thyroid matters anyway!) I was left on 50mcg of levo after being diagnosed for 7 years!!!! After so mant trips back to the docs that i just felt like a hypochondriac in the end, i took matters into my own hands 3 mths ago. I started taking double my dose every day. I cant say im cured, but on most days, i do feel a bit better. Not quite as exhausted, heart rate has picked up to normal levels, less depressed, my hair and nails have grown...still cold a lot of the time, no weight loss yet, but def feel like theres an improvement. Going bk to docs next week for blood test to see what diff double dosing has done...

[humanbean in reply to Hidden]

Good luck.

[Redroz1e in reply to Hidden]

It sounds like so many of is have to sort ourselves out whi is dreadful! Good luck with the blood tests and I hope you see some improvement soon.

[shaws Administrator in reply to Redroz1e]

I agree with humanbean We have to read and learn with the support of members and we can get well.

[shaws Administrator in reply to Redroz1e]

If her patients don't feel good it might be her fault in not knowing how best to treat the patient. If she takes more notice of the blood tests instead of alleviating clinical symptom of her patients they will remain unwell and might develop other illnesses. Regarding when/how to take hormones there is helpful advice on the following link and go to the date January 30, 2002

[Redroz1e]

PS. The only advice has been to take on an empty stomach.

[helvella Administrator Thyroid UK in reply to Redroz1e]

Have a read here:

healthunlocked.com/thyroidu...

AND follow the links on to the polls.

[startagaingirl]

Hi - maybe I can show you that there is hope. Like you I am recently diagnosed, in my case June 16. Looking back over symptoms and general health I believe my Hahis and hypo had been slowing brewing for approx 20 years (I am now 48 btw). With the help of the many very helpful, knowledgeable people in this group, I did a blue horizon +11 test and found out I had Hashis and multiple low nutrients. Again with this group's assistance I started on a regime of multiple supplements, gut re-building and with GP gradually increased my levo dose. I have also been self-medicating with some T3 since Nov to give some exercise capability. I believe I am now about optimum on 125 T4 and 12.5 T3 and will be re-testing in next few days to confirm and check nutrient status. I am also now gluten and dairy free to address suspected intolerance and tackle anti-bodies.

I now feel 100 times better than I did a few months ago, my tiredness and brain fog are gone, my temperature and pulse are now normal, bowels now back to normal, etc,etc.

So it can be done, but it does take commitment, a willingess to learn and being prepared to take responsibility for your own health. You have come to the right place to start that.

BTW - since you also have vitiligo (an auto-immune condition, like me, I would suspect that your hypo is caused by Hashimotos but you haven't mentioned it. Have you had your anti-bodies checked?

Good luck

Gillian xx

[Redroz1e in reply to startagaingirl]

I'm enjoying the advice you lovely people are sharing and I thank you for that.

I am more than happy to try things but initially thought that the medication would sort me out so have been waiting. When I last spoke to my doctor I suggested that it might be an auto immune thing from what I had read and she just said I was probably right though I haven't had any tests that I know of. My concern anyway is that I don't appear to fall within "normal" results. I nearly died when I had my first child because the tests for HELP syndrome came back fine so I was given an emergency c section and bled out because I did actually have it and my liver was apparently the size of a football. Another symptom of the disease I understand. That was 19 years ago so presumably I had it then.

Thank you Gillian 🙂

[puncturedbicycle]

What your doctor said is true - some people never feel better - but it is a bit misleading considering the vast majority of people take their meds and get on w their lives.

I can't help thinking that if you tell someone they will possibly never feel better you might hope they never reach higher than that very low bar you have set for them and they will go home w their pills and never bother you again. Then if they go back and say they still feel ill the gp can say 'Yes, well I did say some people never feel well again.' There is also the small matter of preventing you from feeling better by prescribing a tiny dose of levo for far too long and raising it too slowly. It's great to always be right!

Don't let that stop you from aiming higher. There's a lot that can be done that will help you even if life is a bit different (you are going to take your meds for the rest of your life after all) and there's no reason not to try to live the best life you can whether or not you have hypothyroidism.

The first thing you have to get on top of is making sure you have copies of your test results so you can begin to steer the ship. It will give you more practical control of your situation which will possibly help you feel much better straight away.

[Redroz1e in reply to puncturedbicycle]

Thank you! Getting on here and talking to you lovely people is fantastic. I have noted that I need to record my results so that is on my to do list. At the minute I seem to keep getting different niggly things wrong with me and don't like to say as some people just say oh you're always ill. Somehow I seemed to have developed what I think is sciatica in the last couple of weeks and reading the symptoms it's hard to know if there's a connection or not. All I know is I don't want to feel ill all the time and I need to do something about it so thanks again.

[shaws Administrator]

Untrue! who gave you this information? If we are not optimally medicated and given incremental doses until symtoms resolve, then we may well feel awful. Many do, particularly if their doctors don't increase or decrease dose due to the whetherabouts of the TSH only. They ignore other tests which are far more beneficial.

Quite a few on this forum have recovered through the support they get from other members.

Others have struggled because doctors are very badly trained in how best to treat hypothyroid patients.

[JGBH]

Great and useful info, Gillian. Thank you. Am amazed at the incredible information, encouragement, support and kindness this forum gives to many people. Just brilliant.

[Redroz1e in reply to JGBH]

I agree thank you all