Good news/bad news....Can anyone tell me 150 thyroxine too high for me to start off on?.

[Anuba]

My T.S.H is now 5.5 and free t4 is 13 so docs had to listen to me. Prolactin is in range. I am concerned though as she says I should start taking 150 of thyroxine....is this not too high to start of on? Why has she said this dose. Thanks for reading this?

[Marz]

...oh dear that does sound high. It is usually around 25mcg or 50. Has she told you when to return for a follow-up blood test ? Others will come along and hopefully comment likewise. Have no idea why she suggested this dose.....

[Anuba]

Yes my mum and sis were concerned about it as my mum is on 125 and hers was bad when she got diagnosed. Do you think because I have been feeling really ill she just wanted to get be better quicker or something? I may make an ap with another doctor for a second opinion?!

[PinkNinja in reply to Anuba]

The usual starting dose is 50mcg unless you are elderly of have a heart condition, in which case is it 25mcg. Sometimes, in particularly bad cases, a higher dose may be given to start with but not usually for results like yours. I do find it somewhat concerning that you are being started on such a high dose but then I'm not a doctor.

There is nothing wrong with asking for a second opinion but you might find that the second opinion decides it's not your thyroid because your TSH is below 10.

You could try starting with 50mcg for a few weeks and see how you go. It might be that you eventually need a dose as high as 150mcg but it is very unusual to start this high.

Sorry I couldn't be more help.

Carolyn x

[Anuba in reply to PinkNinja]

No a second opinion should be fine as the max for tsh function here is 5 and then they treat you......I know some doctors are terrible about tsh range....I know that in the states it is good as they diagnose with symtoms at max 3.....

[PinkNinja in reply to Anuba]

In most of the UK they don't seem to treat until it reaches 10 So frustrating! One of our other admins is in a situation where she can't get treatment because her TSH is considered normal even though she only has half a thyroid! Shocking treatment... or lack of.

That's good that they treat you when it gets to 5. That's a definite step in the right direction

[Anuba in reply to PinkNinja]

I know it is awful huh. I went in armed with print outs from Thyroid Uk and basal temps and as my prolactin had been high up till now she retook my tsh and so forth. She said no point waiting another three months as my tsh will probably be up to 11 by then...so she said to do it now before I get even worse....I think alot of people are having to go to private docs recommended on this site or thyroid uk for decent treatment and also if they have conversion probs which is something that is being petitioned about in Scotland just now....maybe as its current my doc was more responsive I dunno

[PinkNinja in reply to Anuba]

Well, it definitely is a positive outcome, which is great to hear. Hopefully more doctors will be proactive like yours. Let us know how you get on. Hopefully because you have been diagnosed relatively soon, you will recover quickly. Fingers crossed!

Carolyn x

[Anuba in reply to PinkNinja]

thanks Carolyn. Yes I think the patient has to go in and know their stuff too....sites like this are great for that. I think because I was symtomatic and knew what I was on about it helped. Now the getting the dose sorted is next tho. I cant believe that people are not getting helped till they are at 10 isnt the range from 0.3 to 5.0 here? i been feeling like absolutely rubbish at where I am. In the Usa max range is 3 and I reckon that is good if you are symtomatic too. Ill keep you informed as to what happens.

[Anuba in reply to PinkNinja]

thanks for your input

[susymac]

You dont get better quicker on a higher dose, if anything you will feel worse. Thyroxine really has to be built up. When I was first diagnosed my TSH was over 60 but I was still only started on 25mcg, anything bigger would have been far too much of a shock to the body.

I'd definately question this with the doctor.

[Anuba in reply to susymac]

wow yeah gosh it is beginning to sound odd - ill have to do that.

[PinkNinja in reply to susymac]

One exception to this is if you have no working thyroid (i.e. had it removed) or one that is almost dead. But yes, starting too high if you have some thyroid function can indeed make you feel far worse

[jaxnbreeze]

My TSH was 9 when I was diagnosed and I was given 75 as a starting dose which was way too high and I felt horribly wired - I am now taking 50 and have been doing for the past 2 years.

[Anuba in reply to jaxnbreeze]

Thanks, I will be getting a second opinion as to the dose

[Moggie]

Must say that I was started on 100mcg's and didn't feel any ill effect but then I knew no different back then but would have questioned that high dose with what I know now.

Moggie x

[Anuba in reply to Moggie]

thanks for replying....gonna look into it

[Hidden]

I was put on 100mcg as asstarting dose.

[Anuba in reply to Hidden]

thanks

[sandi]

I was very surprised at this since everyone I have spoken to has been started on a low dose. BUT....

To help you I looked at gpnotebook hypothyroid treatment ( my gp always refers to gpnotebook when in doubt ) and was shocked to see that it recommends a full dose to start with as there is no evidence that titration from a lower dose is necessary!

By that your GP is correct. They suggest 1.6 mcg per kilo ie approx 100mcg for a 60kg person. So it looks like go has estimated you at 90kg?!

I do worry though that for anyone going from nothing to 150mcg overnight is going to be a shock to the system.

[Anuba in reply to sandi]

thanks...I will definately get a second opinion or try a lower dose first

[PinkNinja in reply to sandi]

I think this is for people with no thyroid or with very severe hypothyroidism. You wouldn't want to give someone with some thyroid function a full replacement dose. The full replacement dose is what the body needs each day. If the thyroid is functioning at all, less than the full dose would be needed. As Anuba's levels aren't too bad, although she is clearly feeling very unwell so definitely hypothyroid, 150mcg would almost certainly be too much. If her TSH was very high and T4 very low, or she had had a total thyroidectomy then starting at the full replacement dose seems to be the best way. The levels need to be brought up relatively quickly in such severe cases too.

I do, however, think that sometimes the doctor go a little too cautiously!

Carolyn x

[sandi in reply to PinkNinja]

It reads as being the treatment for anyone with TSH over 10, which I agree is not the case here. But it also suggests no treatment below that TSH level. (I am not endorsing either of these!)

So any GP following this advice would not treat before TSH 10 then jump in at this high dose. This is worrying since the site is a resource that many GPs use.

Any wonder we have probs....

[PinkNinja in reply to sandi]

I agree. That is a little worrying! If they are working out the full replacement dose and then prescribing a slightly lower dose, fair enough. Giving a full replacement dose to someone with a TSH of slightly over 10 sounds overkill. 100mcg would be more sensible and increase if necessary. Of course, if adrenals and iron haven't been checked, such a high dose could cause problems

It really isn't logical to say that a TSH of less than 10 doesn't need treatment but once it gets to 10 you can give the full replacement dose! I am amazed these so-called clever people (doctors) can't see how illogical this is!

Do you have the link for this please? I'd love to read it. It would be nice to know exactly what doctors are being recommended to do. It could also help those who are started on a measly 25mcg or 50mcg and then kept there because their TSH is 'normal'. We have to use these things to our advantage

Thanks

Carolyn x

[sandi in reply to PinkNinja]

Hi Carolyn have tried to put link below but it doesn't look like link - sorry! I'm clueless!

The site is gpnotebook.co.uk

There is a search facility on the site and lots of pages with reference to hypoT but you are only allowed to look at 3 pages a day (unless you are a fully paid up GP)- so you have to make sure you search well. Am up to my limit for today otherwise I would have searched for the best three pages!

gpnotebook.co.uk/simplepage...

If anyone knows how to make this a link please do feel free to do it or tell me how..

Sandi

Oooh - it made a link once I pressed submit - how exciting!

[PinkNinja in reply to sandi]

Lol Yes, now that it works it is quite cool

Thanks for the links. I shall have a look now.

Carolyn x

[helvella Administrator in reply to sandi]

Dearie, dearie me. Thanks for posting the link.

a small randomised controlled crossover trial has revealed that taking levothyroxine once a week (seven times the daily dose taken once weekly) is a safe regimen and may be effective in refractory cases

OK GPs - how many of YOU would happily take 1050 micrograms of levothyroxine in one go. (That is, the proposed 150mcg starting dose for the original poster - times seven.)

a randomized controlled trial has shown that the low starting dose regimen of levothyroxine is not required for most patients (except in patients aged 60 years or more and those with cardiac history) and a full replacement dose of levothyroxine is safe and may be more convenient and cost-effective

That might make sense if there were a good evidence base for calculating a full replacement dose for an individual. Further, I believe there is a profound difference between patient A who has been diagnosed almost immediately as being hypothyroid and patient B who has been suffering for twenty years and getting more and more hypothyroid.

a combination of T4 and T3 has not been shown to have any advantage when compared with standard T4 monotherapy. Furthermore T3 is five times more active than T4 hence there is a risk of over treatment if the dose of T3 is not carefully controlled. Therefore addition of T3 in any form is not recommended.

All this says is that the doctor who can calculate the exact starting dose of levothyroxine is utterly incapable of even thinking about a very careful trial with T3. And that the author is perfectly capable of trotting out the much repeated but never substantiated "five-to-one" rule. One I believe to be wrongly based in logic and science and therefore should have no place in medicine. And that they know nothing of real patient experiences which have sometimes turned lives around by appropriate use of T3.

Rod

[PinkNinja in reply to helvella]

Scary reading, wasn't it?

[sandi in reply to PinkNinja]

And I'm sure it can't be just my GP who relies on this ...

[helvella Administrator in reply to sandi]

I have seen my GP go to that very website - right in front of me. So I am certain it is used by many GPs.

[helvella Administrator]

150 micrograms would represent full replacement dose for many people. In fact, it would be more than full replacement for quite a lot of people.

As sandi wrote, that does suggest a calculated full replacement based on around 90 kg weight. But you have some, possibly quite a lot, of thyroid function. So you may well not need that much. Further, some people seem not to need that much even if they have no thyroid function at all.

After thyroidectomy, I entirely endorse trying to provide full replacement from the start. In most other cases, I think it would be far too much.

My test results weren't far from yours when I was diagnosed. I started on 25, then 50, 75, now 100. But I am actually thinking that might be too much. I am a substantial male.

Rod

[Anuba in reply to helvella]

thanks for your input....I will def take this into account....get second opinion

[helvella Administrator in reply to Anuba]

By the way, I also think that starting a patient on 25, leaving it weeks and months, then 50, leaving it weeks and months, etc. is an unnecessary charade. Being on inadequate treatment over a long time seems to be the worst of all worlds.

Start the person on a reasonable dose for them in their clinical situation, and then raise it fairly briskly to what looks about the right dose. Keep checking how things are going.

A Dutch study about six or so years ago started people on 100 mcg. The time between starting and being signed off as on an adequate dose and all the other factors showed no clear reason to go for one approach rather than the other. But it did suggest that it was not unreasonable in appropriate cases.

Rod

[Anuba in reply to helvella]

thanks I agree......sometimes its a struggle for people to get higher doses if its too low for them too.

[rosetrees]

Your results are similar to mine a year ago. I started on 25mg and raised gradually to 100mg, at which point I started to go hyper and reduced to 75mg. I then saw Dr P and my treatment regime changed totally.

[Anuba in reply to rosetrees]

thanks

[Anuba in reply to rosetrees]

If you dont mind me asking what treatment are you on now and does it work better for you now?

[rosetrees in reply to Anuba]

Ok. I take 25mg thyroxine (which is purely so that it remains on my GPs notes that I'm taking it), 2 x Nutri Thyroid, 4 x Nutri Adrenal Extra, 20mg Hydrocortisone (in cream form), Vit B12, Vit D, 3g Vit C, and 150mg Ginseng. I'm also on a paleo(ish) diet and alpha lipoic acid for my kidney function. I think that's about all.

I have a long way to go, but I am so much better now than I was this time last year that I can hardly begin to tell you (which, according to my General Pratt-titioner, "might not" be due to anything I'm taking.) I've tried swapping the 2NT for an extra 25mg thyroxine and went downhill within days, so I know the NT helps.

Historically, ginseng was the only thing I found that helped in the days before I knew anything about adrenal problems. Now I know why it helped.

The thing that made the biggest single difference was starting the HC cream. But it's a jigsaw and you need all the right parts in place that work for you.

[Anuba in reply to rosetrees]

Thanks for telling me that....v interesting....I feel like I will probably have some adrenal issues to sort out on my journey for the right treatment too....much appreciated and glad you are doing well on it so far :

[Fruitandnutcase]

Think I started on 50 was on that for a couple of months then went up to 75 and am now alternating between 75 and 100 mcg. Im 64 though and I'm sure I read somewhere that older people start on lower doses. 150 seems quite a lot doesn't it.

Liz

[Anuba in reply to Fruitandnutcase]

thanks...yeah will be def looking into it

[Ansteynomad]

There is published research that says if you are under 60 and have no signs or symptoms of ischaemic heart disease, there is no point spending time titrating from 25 or 50mcg because it will be proportionally longer before the patient sees any benefit. That research recommends 100mcg as a starting dose.

I started on 75mcg and saw benefits from the very first dose and given that the main reason levo appears not to be effective is that people are not taking enough, I reckon 100mcg is worth a go. You can always drop back if it feels like too much.

[Anuba in reply to Ansteynomad]

thanks. I am perhaps considering trying 100 or 50 first week to see how I go and getting a second opinion as well.

[Anuba in reply to Ansteynomad]

If 100 okay then thats good if its too high I will lower dose and discuss with doc too....thanks its great to hear everyones opinions and experiences

[PinkNinja in reply to Ansteynomad]

100mcg is a much more reasonable starting dose than 150mcg for someone with a TSH of 5.5

[Hidden]

Thats what happened with me start dose 100mcg then decreased to 75mcg, 50mcg, 25mcg, , even was on 25 mcg every other day. Now bck on 75mcg, I tend to go by how I feel rather than blood test.

[Anuba in reply to Hidden]

exactly I will do the same...how you feel is the best indicator....fanks.

[Wired]

My initial TSH was 12 and I was started on 50mcg as a starting dose. After a few weeks this had to be reduced to 25mcg as I felt so unwell. I now take 100mcg daily but have had to build up very very slowly. My body really doesn't like big changes in my meds. Considering this, I would probably say it's too much to start with.

[Anuba in reply to Wired]

yup thanks