Starting thyroid medication - tips and reminders please

[chihiro]

Following my TPO ab result of 1229 (0-100) but in range TSH and FT4 my GP has agreed to give me a trial of medication to see how I do. He was against it because he says that taking it when you don't need it will cause heart problems and brittle bones.I'm fairly certain I have seen it mentioned on it as it not really being a problem, shall have to investigate more...

Anyway I asked him if he would allow me to give it a try now that he has outlined the risks and his concerns. He agreed He phoned this evening to tell me that my ANA results came back negative and to pick up my prescription tomorrow. I think he said we will be starting at 25 and see how I feel.

This is going to sound ridiculous but I am actually a little nervous about starting it. I know it's what I was hoping for but now that the time has come I'm feeling" uh oh this it" and the two thousands worries are going through my head...

what if it doesn't agree with me?

what if I end up feeling worse?

will it give me side effects?

and so on...

From what I remember seeing on many posts here it is to be taken on an empty stomach with water either first thing when you wake up or before bed.Any pros or cons to either or is just a question of personal taste? Should I start with first thing in the morning?

Also I know I need to make sure I don't have it near iron supplements which I am starting now and away from calcium too.

Will I feel any different straight away or does it take some time to build up?

Any other tips or advice for this nervous Nellie?

[Hidden]

I suspect that the latest NHS diktat is to frighten patients by use of the words 'heart problems'. Recently been told this by Endo and GP.

Sorry, it doesn't answer your questions but good luck with it.

[chihiro in reply to Hidden]

Thank you cinnamon, I really hope I start feeling better on it.

So you have been told the same huh? Interesting...I really do need to look into it but I am sure someone on here has said it's nonsense and not proven. I just feel so awful that I am willing to take the risk. If it's prescribed to people surely it can't be that bad. Also wondering if it's mentioned in the leaflet that comes with it....

[Hidden in reply to chihiro]

I'm so so cynical when it comes to the NHS - nobody wants to take any responsibility for anything, nobody wants to help patients by using clinical judgement blah blah. Sometimes we're left with no option but to take any medication as we've really had enough of feeling rubbish!

The thing is, if you were to ask for references of studies, would they be able to name any?

[shaws]

Dr Skinner (RIP) in his book says that a trial of levo is harmless when people have clinical symptoms. He was trained as a student doctor that the priority was clinical symptoms and the look of the patient. Unfortunately, that has gone out of the window now and GPs usually only diagnose now by blood tests.

Levothyroxine is a synthetic thyroid gland hormone called T4 which should convert to enough T3, which is the active hormone we need. 25mcg is a very small dose and you may need a rise in about 6 weeks if your symptoms don't improve. I am glad your GP is at least giving you a trial.

I take my medication as soon as I wake with one glass of water. I get breakfast around 1 hour later. I take supplements at lunchtime. Why we take meds on an empty stomach is so that the uptake of the thyroxine is not interfered with. I don't think you'll feel much difference with 25mcg but only time will tell.

On the morning of your blood test do not take your medication until afterwards and have it as early as possible. If you've had your breakfast before the blood test, you can take your medication as long as you've allowed 2 hours to elapse since you ate.

There is nothing to be nervous about and the majority of people do well on levothyroxine. Don't anticipate problems beforehand and it could be smooth sailing. Always get a copy of your blood test results with the ranges and post if you have any queries. Also ask for a Vitamin B12, Vit D, iron, ferritin and folate as the first two are usually deficient.

PS. if you need levothyroxine and are kept undermedicated, then that could definitely give you heart and bone problems. We are only replacing a hormone that our body produces naturally, and if it doesn't we need to replace.

[chihiro in reply to shaws]

Thank you Shaws that was incredibly helpful information and just what I needed to hear. New things/the unknown scares me and makes me uncomfortable so I know that once I get going I will be fine...it's just pre-medication jitters

All my vitamins etc that you mentioned have been tested. Was deficient in folate and vitamin d but now those are under control and back in range at a good level. B12 is sliding down again but gp doesn't believe in anyone needing to be higher than 400 which is obviously ridiculous. I'm keeping a close eye on those levels. Started at 362 in the summer, had loading doses. In January tested again at 488 and now down to 410. The other one that I have definitely still have a problem with is ferritin. I am still deficient. Went from 7 to 9 in the last three months (range: 10-291) and taking floradix. Now going to give ferrous fumerate a go. Worried about constipation but will try the advice given on here of taking it with vitamin c to see if it helps.

I have often read on here that levo won't work if ferritin is below 70 so I am little concerned about that. But I have to grab this opportunity of a trial as it might not be offered again if I waited till my ferritin levels were higher. Will levo not work because of that deficiency?

[BeansMummy]

I was quite excited when I first started taking my levothyroxine, I thought I would wake up the very next day with no symptoms! It wasn't that quick.

I used to take mine when I woke up but, following advice here, realised that it was important not to eat or drink for a while after taking them.

Also, my memory was so bad that I would forget 5 minutes later if I had taken them or not. As I tend to wake up in the early hours, I now take mine, with water, when I am still half asleep - I put the tablets in a dish by the bed. If they are gone when I get up, I know I've taken them.

Good luck

[chihiro in reply to BeansMummy]

Thank you BeansMummy. That's a great tip as my memory is pretty rubbish these days I will try that.

I shall also be patient and not expect it to be an instant fix.

Are you feeling well now?

[BeansMummy in reply to chihiro]

I was diagnosed with Hashimoto's around 3 years ago because I had a small swelling below my neck and went to see my GP. I didn't think I was unwell, and that my tiredness, aching etc. was due to overwork, lack of sleep, menopause, getting older and so on. I was given levothyroxine, but had no expectations as I was "OK".

I think I did start feeling better, but have gone downhill again - my problems now seem to relate to vitamin/iron/everything-else deficiency, so I have a different set of issues to sort out, which are all related to Hashimoto's. On the positive side, however, my life is certainly a lot happier than it was 3 years ago

One thing that I learned from this site is to ensure you always get printouts of any tests you have. I always accepted what the GP said when I had follow-up blood tests, and now realise that "normal" doesn't mean "well". I am still learning about what I need to look after myself, as I don't have great faith in the medical profession to do it for me. I don't have the confidence to go against any advice my GP or endo give me, but will now ask questions and make statements to them to enable me to get the treatment I think I need, but I don't know that I would go directly against something they didn't like (yet!)

The only specific side effect that I remember is that I had horrible palpitations when my dose was increased last year. I think googling it is what led me to this site. It was very scary, but at least my GP and endo checked everything out, and they still monitor me.

[chihiro in reply to BeansMummy]

I hope you manage to get your vitamins and iron levels up, they really are important. Mine were really low a few months ago and I have managed to improve them except for ferritin. Now on proper fumerate pills and hoping it won't make me too constipated!

Did your palpitations settle down or did you have to change dose?

[BeansMummy in reply to chihiro]

They eased off, but only after a few weeks of feeling awful. I get them occasionally now, but at least I don't panic about them. I stayed on the same dosage.

I guess you have popped some pills by now!

[chihiro in reply to BeansMummy]

No I haven't started yet. I collected them but I am still trying to decide whether to have some private tests first to get FT3 which has never been tested. Just wanted a good proper baseline before starting.I waited this long I figure a few more days won't hurt

[valerie]

Hi Chihiro, 25mcg is just a starting dose to make sure it suits you and does not bother you heart wise especially if you are older. Most people need more. After a few weeks you need to have a blood test to see if all is well and probably have an increase. On a very small dose there is always the possibility that your pituitary gland will think "hey this is good, the old thyroid's working better so I need produce less TSH to stimulate it". Result is that the thyroid starts producing less and you are worse off, or at the best, the same as you started. I was stuck on 25mcgs for two years or more because the decent locum who recognised I had a thyroid problem up and left and I didn't realise that I needed to be increased until I started researching thyroid online.....Valerie

[chihiro in reply to valerie]

Hi Valerie thanks for your reply. I booked my 6 weeks blood test this afternoon so I could get a nice early slot before work as those tend to disappear very quickly.

So if I understand correctly what you are saying is that the levo will suppress my TSH but as time goes by then it will rise again if my body needs a higher dose?

[Hidden in reply to valerie]

Same thing happened to me. As an older woman I am scared about the heart thing and my new doctor is treading very slowly with me and I want her to step it up because my t3 doesn't seem to move.What are you on now?

[valerie]

Hi Chihiro, I think it is generally agreed amongst those who know a little about the thyroid workings and I have read it often on here and elsewhere, that a low dose of Levothyroxine can can suppress TSH production and hence suppress the thyroid production. No I don't believe that the TSH necessarily rises accordingly otherwise the GPs would dish out more Levothyroxine instead they see that the TSH has gone down a bit and think that things are better when in fact the actual thyroid is producing less and and the overall T4 in circulation is less or at the best the same as before starting 25mcgs of Levo. I don't know if this is always the case but I believe it does happen with a lot of people and that is why the 25mcgs dose is just a testing dose so to speak. I was on 25mcgs for about two years and didn't notice any difference in my health in fact I got worse until I realised that it was far to low a dose and asked for a higher dose. Basically what I am saying is that you really should have regular blood tests and depending also on how you feel, you should raise your Levo accordingly. I don't think many people get satisfactory results from just 25mcgs of Levo. I have also read that with many people even a dose of 50 or 75mcgs can have the effect of suppressing the thyroid production. Many doctors are beginning to think that starting with a dose of 100mcgs is better....Valerie

[chihiro in reply to valerie]

Thanks for the explanation Valerie that was very helpful I guess it proves that looking at TSH is not a good idea? They should be looking at FT4 and FT3 levels instead?

[valerie in reply to chihiro]

Well it is always best to look at TSH, T4 and T3 as much more information can be gained that way.

[chihiro in reply to valerie]

Morning Valerie Yes I guess all 3 together is best, unfortunately I find too many doctors seem to be fixated on TSH only which is probably why so many patients like you said are left feeling awful.

Obviously I know that how we feel is more important but if the medication works am I to expect FT4 to go up and TSH to go down?

[valerie in reply to chihiro]

Good morning Chihiro, Well obviously if the medication (levothyroxine) is working then one would expect the TSH to go down and the T4 and T3 to go up but it is important to go on symptoms when possible. I believe that when one is actually on medication then one should aim for an even lower TSH (around 1) than would be acceptable if one was not on medication. I've been reading these blogs and TPA site for three years or more now, plus one or two books and reliable medical research online and it is the best way to learn. Keep asking questions and always send your blood test results and you will get great advice on here or TPA.....Valerie

[chihiro in reply to valerie]

Out of interest what blogs do you read? Will have to check TPA out. I agree that asking questions, reading and learning is very important. If we left it to our doctors we most likely would be feeling a whole lot worse. Had I gone in and waited for him to tell me what the results were I know full well that I would have walked out of there empty handed.

ps: thanks to Amy Winehouse (may she rest in peace) I can't help but singing your name everytime I see it

[tegz in reply to valerie]

I had a bad time on 25mcg Levo and wouldn't like to go back on it. I'm sure it suppressed what little T3 etc that I was making.

[HarryE in reply to tegz]

25mcg will probably do just that. It is a very tiny dose and was probably nowhere near enough.

[tegz in reply to HarryE]

I think I upped it for a while- but no change,still felt rubbish. I tried higher to see if any better but I was glad to stop it. I just felt my body would not like any amount of lone T4.My TSH came down but that was not needed right then. All far too heavy handed for me with no concerns about co-factors[Vits.Mins,Adrenals etc] that are so important.

[lucindajethol]

Hi You don,t say how old you are, but if you are say over 55 the GP will always gradually start you off on a dosage of 25mcg if he is doing his job properly. During your visit he should give you a slip to go to the path lab for another blood test after 6weeks. You then make another appointment to see same GP a week after you have been for your blood test assuming he will have the results back by then. Having received the new results he will either put your dosage up to 50mcg accordingly, or leave you as you are on 25mcg if it is working for you. I can only speak for myself but I was like superwoman for a few days after starting on this medicine but it soon settled down. Eventually going on the results of each blood test I now take 125mcg of Levo and after a year I feel great again. I don't seem to need any other supplements so far, and will not be going back to the doctor unless I get any related problems. Hope you have the same results. Some of the ladies on he forum seem to suffer with more complications than I had, and they have my sympathy, as its horrible being in pain and lacking lustre for any amount of time. Very wareing. Good Luck things can only get better.