Advice please (for a newbie!)

[Eurasian-Babe]

Hi all, having been diagnosed by GP last month (apparently after her colleague missed hypo result back in 2005!) I've appreciated reading advice here from more seasoned colleagues. Really helpful guidance, am subsequently taking Levo last thing at night & Adcal (being post early menopause!) as far away as possible from thyroxine e.g. mid-morning. Due back to see Dr in a couple of weeks, following first follow-up blood test next - so wondering now, is it OK to be put straight onto 100 mcg dose; at what stage should I ask for a referral to Endo & if ASAP does anyone know of a good one in Norwich area please?

[shaws Administrator]

Usually GP's are fine at prescribing levothyroxine. It will take some time for you to get to a dose which makes you feel well again. You should have a thyroid gland blood test about every six weeks with an increase in meds. Always get a copy of your blood test results for your own records and you can post them if you have any query (you must put the ranges as labs differ). If you haven't already had a Vitamin B12, Vit D, iron, ferritin and folate blood tests ask for these to be done.

I assume you are on 50mcg levo at present? For some, a jump of 50mcg to 100mcg may be a little too much. It may suit you better to go up by 25mcg increments each time.

[Eurasian-Babe in reply to shaws]

Hi Shaws - thanks for your response. Part of my concern is that my GP had put me straight onto 100mcg. Having also read the box insert which reads "For patients over 50 years the starting dose will not usually be over 50 micrograms" & when I picked up a repeat prescription yesterday spoken with the Pharmacist who said "I didn't know that - I'll have to read up on it" when I told her this forum had informed me Calcium effects absorption of Thyroxine, I'm somewhat concerned about their knowledge!

[Hidden in reply to Eurasian-Babe]

Hi, I was started on 25mcg when I was diagnosed in May this year and when I read the box insert that says "for patients over 50 years the starting dose will not usually be over 50 micrograms" I was sitting there thinking, "well I'm 28. Does my GP think I'm on my way out?"

So you're not alone with the confusion of the box insert. The GP also didn't tell me calcium affects the absorption of thyroxine - it was only when I went to pick up my prescription that the chemist told me. That is poor, really, from a GP.

Jo xxx

[Moggie in reply to Eurasian-Babe]

Welcome to the world of thyroid illness - it is only a thyroid sufferer and a good endo that really knows the real what's, if's and but's, which is why it is so important to educate yourself.

Yes calcium does effect the absorption of levo (which includes milk) and should be kept, at least, four hours apart.

Moggie x

[helvella Administrator in reply to Eurasian-Babe]

That sounds like a fairly common level of pharmacist understanding and awareness!

Some are far, far better and quite a lot try to help. But their 'lowest common denominator' level is somewhere near the floor.

Although not written in an easy-to-read format and drifting out of date somewhat, this is a potentially useful page about interactions of thyroid and other things such as medicines, supplements and some foods:

thyroidmanager.org/chapter/...

Rod

[Moggie]

Hi and welcome

Please get in the habit of asking for a print out of ALL blood and test results, not only for your own records, but also so you can post them on here for advice and support.

As Shaws has already said you need to get certain vitamins checked as these vitamins are crucial for the body to be able to use your levothyroxine (T4) properly. These vitamins don't just need to be "in range" by the NHS standards, they need to be optimal for thyroid patients - for example, an "in range" NHS B12 test can be as low as 200 but a thyroid patient needs their B12 to be over 600 and nearer 700 (depending on ranges) and as you can see there is a huge difference. This also goes for most of the tests that Shaws has advised you to get.

Once you have had these done get your print outs and post the results on here (with the ranges which are in brackets after the result) and people will be able to help you.

Your GP may only refer you to an endo if you are one of the unlucky ones (which is most people on here) who do not do well on levo - people who are doing well on levo do not tend to find this site, which I assume is because you only look for help if you feel you need it. Many people do extremely well on levo so lets hope you fall into that camp and wont need a referral to an endo.

It's great that you have already looked around the site and started to educate yourself on how and when to take your meds, knowledge really is the key to this illness, the more knowledge you have the better equipped you are to tackle any problems that may occur.

Moggie x

[Eurasian-Babe in reply to Moggie]

Thanks Moggie, that's all really helpful guidance...

As you've suggested, I'm all about educating myself from the outset & as an ex-nurse & now a therapist (& until recently thinking they were due to an early-menopause!) have been able to deal with my symptoms using some of the various techniques I employ with my clients so I certainly can't complain. In fact, I'd say I feel lucky as (to date!) I don't seem to be experiencing anything like the difficulties many others are describing & to whom I send my heartfelt sympathy.

[Moggie in reply to Eurasian-Babe]

Being an ex nurse obviously explains your sensible attitude, and your very welcome to any guidance I might be able to help with.

Moggie x

[Ansteynomad]

If you're under 60 and have no signs of iscaemic heart disease, there is published research which basically says that starting on 25mcg and titrating upwards in 25mcg doses only delays the point at which you will start to see an improvement. I started on 75mcg after my GP negotiated me down from my request for 100mcg and I started to see improvement from the very first dose.

[Eurasian-Babe in reply to Ansteynomad]

Thanks Ansteynomad - that is reassuring as my GP had started me at 100mcg & I also have already seen some of my symptoms ameliorate.

[lilliput]

I was started on 25 mcg of Levo, then 50, then 100. I was apprehensive about the jump but cut the pills to begin with, so 75. I now take 100 mcg with no problems. The usual starting dose is 25 or 50 mcg. I personally wouldn't take 100 mcg as a starting dose.Apparently it can take up to 2 weeks for the Levo to enter your system.

[Eurasian-Babe in reply to lilliput]

Thanks Lilliput - as other respondents have suggested it is OK to start with a higher dose, may I ask why you say you wouldn't please?