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Hypothyroid people - how to get a balance between TSH and T4.

(55 Posts)
margoandjerry Sat 02-Aug-08 21:05:16

Just got my latest bloods done. TSH is 2.93 and T4 is 23. I think the TSH is too high for me - I'd like to ttc later this year and when I conceived my DD I was told my TSH should be closer to 1. But my specialist at UCH doesn't want to put my meds up (I'm on alternate days of 1.25 and 1.5) because he thinks T4 is already high.

Anyone had this experience, or anyone with any suggestions?

margoandjerry Mon 04-Aug-08 18:29:25

bumping in case anyone can help.

mousemole Tue 05-Aug-08 19:20:26

2.93 is on the high side. Why not see if you can try taking 1.5 ( assume you mean 150mcg) and then re test in a month. He can't really say no ? Do you feel 'hypo' at the moment ?

Honneybunny Tue 05-Aug-08 22:21:19

at 23 T4 is in the higher values of the normal range. your tsh is quite high too though. it's a bit of a tough one, personally i don't feel well until my tsh is around 1.

was your dose just upped and was that why you had the bloods done? if that's the case i can understand why your doctor would be hestitant to put it up even more. do they know about your plans to ttc? if not, i would discuss this , and your concerns that your tsh should ideally be around 1 (which is correct), with them.

misi Tue 05-Aug-08 22:36:32

the standard level of TSh as set by the CMO is 1.8, but some people function well at higher levels some need a lower level.
what your doc should have down with these results is order a TRH, T3 and rT3 test as it sounds like you have a form of hypothyroidism that is less about T4 production and availability but more about the lack of T4 your body can convert into the active form T3 when needed. I would ask to see another consultant as this one does not seem to know an awful lot about hypothyroidism!!

saltnshake Tue 05-Aug-08 23:06:04

Hello I’ve spoken to my doctor a bit about this in the past when I was at your stage of thinking of TTC and he admitted that it depends what labs your bloods get sent to. The labs here say anything between 1 and 4 is ok but in America it seems a lot of labs go for between 1 and 2. If you think it is too high for you it could be right. Also T4 changes daily and even throughout the day.
The first time I conceived my TSH went really high I don’t remember exact details but it was high. I miscarried the first time and suspected the TSH but when I conceived again it did the same thing but baby fine - 4yrs now. Next time it also went high - I didn’t follow it so closely but just upped the dose as doctor recommended and everything fine that time too.
It is very stressful at the time trying to work it out as it is difficult/impossible to control. Another problem you may find is that NHS labs here automatically reject bloods if they have tested them within the last 6 weeks as they say it takes this long to change!
When I was TTC I did what you shouldn’t do and just upped my dose from 1 to 1.5 until I was 12wks pregnant - I think baby starts to make its own by then? I didn’t want to take any chances. If you have been on it a while you know when you have too much and can reduce it again.
Sorry to be so wordy but I read a lot of sad stories about people TTC and having problems while on thyroxine and thought it would be hard TTC but I was lucky and hope you will be too! Think all those who have had the kids are too busy to reply!

misi Tue 05-Aug-08 23:17:46

yes, different countries use different scales for testing. here it is 0.4 or below is over active (but one or 2 labs say 0.3 just to confuse) and then anything else above could be under active, but 1.8 is about the level most endocrinologists use to determine underactivity, although a ''normal'' person can function normally at up to 3 but someone on thyroxine needs to be kept between 1 and 2. few endocrinologists actually know much about thyroid probs, they deal mostly with diabetes (about 80% of their work is with diabetics). my endo consultant freely admits I know far more than he does and asks me questions each time I go see him about every 6 months. something natural I recommended to him many years ago, he researched himself and now recommends to most of his patients grin

Olihan Tue 05-Aug-08 23:20:01

I feel much better when my TSH is below 2 and at my best when it's around 1. Can you go up to 150mg every day and retest in 6 weeks with a full thyroid screen? That would at least show if it's a t4/t3 problem.

I got pg while on thyroxine and was sent to a consultant specialising in thyriod problems in pg at 7wks. He upped my dose by 50mg and said I had to stay at that dose while I was pg, then drop to my non-pg dose as soon as I'd given birth. Apparently that's the usual increase needed to support the extra amount of thyroid used by the baby.

misi Tue 05-Aug-08 23:23:18

you can do but it would be best to test for T3 and rT3 from the outset. you can use a formula to get a rough level of T3 by using the TSH and T4 numbers and by using this, that is why I suggested margonadjerry may have a T3 conversion problem as her T3 levels to me sound a bit low

saltnshake Tue 05-Aug-08 23:25:31

What did you recomend misi if you don't mind sharing?

misi Tue 05-Aug-08 23:32:59

shouldn't really say but what my problem was when first diagnosed was that my liver was knackered, something common with thyroid probs. he said my liver was working at around 33% and said that once on thyroxine, it would take about 2 years to get back to normal. I took a concoction of milk thistle, artichoke, dandelion and a few other obsure herbs, and within 6 months my liver was working at around 97% he said. he ordered new tests after the first showed this improvement as he said it had to be wrong, when reading the second test he was dumbfounded. I told him what I had done, he wrote it all down and 3 months later he told me he had recommended the milk thistle and artichoke to several diabetic patients and was hopeful of improvements. he continues to recommend these now and asks about new brands etc each time I go see him

misi Tue 05-Aug-08 23:35:01

forgot, and my cholesterol which is another problem for thyroid people is steady at 4.9 with no meds (statins cannot be used in thyroid people anyway) but I have no need as my cholesterol is good and this is in part to my good liver function not due to my diet as I love a butter and bread sandwich grin

saltnshake Tue 05-Aug-08 23:46:51

Thanks misi , I sort of forget that every cell in the body is effected. I did a lot of reading about it when I was first diagnosed but it is all a bit woolly now. I do remember being told that it might all swing the other way one day and I’d have to have thyroid removed which is a horrible thought.
Do you think it is a good idea to try and reduce the need for a high dose by adjusting other things like bunged up liver? I’ve never come off the higher dose from pregnancy and baby nearly 2 now - I assumed the extra stone I am still carrying is absorbing the extra thyroxine but maybe there are other factors.
(P.S bedtime so thread highjack over)

margoandjerry Wed 06-Aug-08 09:24:07

thanks for all the responses - very useful. I thought it was an odd combo and I also thought my specialist was a bit casual about it so it's good to know I should be pursuing this.

I did some googling and found that this combination of results can also be helped by selenium so am now taking a supplement of this too.

I already have one DD and she was conceived while my TSH was lowish (1-2) so I feel I should get back there but don't know how. I feel ok actually - ok energy and not too cold for once. weight is piling on though sad.

Am seeing my fertility consultant next week and will ask if he can recommend someone for me to see who has an interest in thyroid and fertility who can help me get into balance.

misi Wed 06-Aug-08 11:42:40

saltnshake, usually, once on a higher dose, it is virtually impossible to come off. there are things you can do like make sure you take your thyroxine on an empty stomach at least 30 mins away from any tea or coffee too. boil any brassicas you eat to death as brassicas have a goitrogenic substance in them and interfere with thyroxine synthesis. peanuts too are slightly goitrogenic. soya too can interfere with thyroxine.
margoandjerry, yes, without selenium, T4's will not be converted to T3's. ( a T4 molecule has 4 legs, and is inactive in the body, floating around minding its own business, when the metabolism is stimulated by TSH, (and TRH) a selenium molecule is ''fired'' at a T4 to snap off one of the legs which selenium does well. sometimes with low selenium levels the aiming is not quite good enough and a wrong leg can be removed and is called a rT3 (reverse T3) which is useless to the body but stills makes the body think that T3 has been made)unlike iodine which is used by the body for thyroxixe production only, selenium is used for many things and when selenium levels are low, not enough may be diverted to T3 production. 50mcg is a good maintaniance dose as this is around how much the ''average'' person uses a day. 200mcg is a good theraputic dose that I used to build my levels up. loosing weight is always a good idea but not often easy if you are not totally in control of your metabolism. do not take extra iodine though as this could have adverse effects on people already taking thyroxine.
unless your thyroid gland is diseased most hypothyroidism people have no need for the removal of the gland, over active people often have a small piece removed to slow down the over production and sometimes it is reoved altogether and then placed on thyroxine as they will go from over active to under active. your liver is where around 50% of T4 to T3 conversion goes on so any liver problems will have an effect. it can be due to a fatty liver due to the way under actives fail to clear blood fats from their body effectively. I would use fat busters, like lecithin to more effectively break down fats for assimilation into the body, bile producers like milk thistle and again lecithin, and a few others I would not be happy mentioning on here. artichoke and dandelion are good for liver congestion too.

margoandjerry Wed 06-Aug-08 16:27:24

misi that is fascinating and extremely useful, thank you.

I do not know what my liver function is but I should find out I guess. I always assumed it would be quite good as I barely drink and have a reasonable diet but I am now wondering if the fact that I had my gall bladder out last year might have affected the T3 T4 conversion you mention.

I am grasping at straws and with very poor anatomy knowledge as you can tell!

misi Wed 06-Aug-08 20:55:02

ah, gall bladder removal will mean your liver under more stress as some of the enzymes and bile the gall bladder made and released into the bowel will be taken up by the liver. any client that comes to me with a gall bladder removed will be told to get some lecithin, take it for a month and come back. 90% of the time, the reason they came to me has gone with taking lecithin. lecithin breaks down fats in the digestive tract to make them easier to digest and absorb. it also promotes bile formation and movement (sometimes bile is made but lies in the gall bladder or liver and adds to the congestion) and this bile aids the digestive process of the fat based nutrients. so yes, you may find that your liver is not working as efficiently as it could as it will be under great stress with the thyroid and gall bladder probs. ask for a full fasting lipid and blood fats blood test and make sure you get your LFT's done as well (and U=E's to be safe as the kidney often over works if the liver is under stress)

misi Wed 06-Aug-08 20:56:21

U+E's not U=E's!!

madcol Wed 06-Aug-08 20:59:18

The kidney ' often overworks if the liver is under stress' !!!! WHAT DO YOU MEAN?

misi Wed 06-Aug-08 21:26:43

the kidney has to filter more waste in the blood than normal as if the liver is not removing waste and toxins, they stay in the blood longer and pass through the kidney more often making them work harder, nothing to worry about unless you have a kidney problem which is why docs should always do LFT's (liver) and U+E's at the same time

madcol Wed 06-Aug-08 21:29:06

What toxins are you talking about?the liver and kidney ahve different excretory functions.

misi Wed 06-Aug-08 21:34:52

they do but all the toxins etc pass through both organs as they go round the blood. every drop of blood is filtered by the kidneys as it is in the liver. so a toxin that the liver should have got rid of but hasn't been able to, passes through the kidney too so although the kidney won't be looking to get rid of, it will still be exposed to higher levels of toxins than usual if the liver is not working properly. liken it to a sorting office. every letter is looked at and goes through the system even if it is for somewhere else. but also in some illnesses, the kidney will filter out things it wouldn't normally do like in cancer. No DNA can be recovered from urine normally as it is not excreted by the kidney, but in some forms of cancer, DNA will be present in urine, does that make sense?

saltnshake Wed 06-Aug-08 22:56:28

I’m really glad I stumbled upon this thread, I haven’t been thinking about my health enough recently but I really need to.
Thank for mentioning the selenium margoandjerry - I was taking this in the past (2 brazil nuts a day!) but had forgotten about it until I saw it written again.
misi it is good to read someone so well informed and thanks for answering me so specifically. I did manage to reduce my dose again after birth of first child but not the second time round. What you say about an empty stomach is good - I used to take more care about this but looking after 2 kids and not just one has meant I’ve come last for a while. Anyway, things getting easy now so time to start thinking about things like this again. I should be able to lose the weight with a bit of effort because it was not something that seemed to be affected by the hypothyroidism in the past. A lot of it is not getting any fast walking anymore now eldest wants to walk too so no more speedy pram pushing. Also meals not healthy as they should be - need to plan quiet time to prepare salad and veg instead of waiting for hectic teatime and cooking what is easiest.
‘unless your thyroid gland is diseased most hypothyroidism people have no need for the removal of the gland’ this was comforting to read, I always assumed that this was something that was waiting for me in the future. Doctor described it as the thyroxine like a key jiggling in a lock and one day it will turn and remain open…? It made sense at the time but now sounds a bit odd.
I’m not big on taking supplements but it is interesting that you mention the liver too. I do have a fatty diet and probably underactive so will work on that before trying supplements. You have inspired me to do a bit more reading on all this so many thanks.

misi Wed 06-Aug-08 23:09:16

you are welcome saltnshake.
there is a lot of info out there, just be careful to read several sites to get a balanced opinion. some sites are more about selling stuff to you than telling you about it. any queries, let me know

Honneybunny Thu 07-Aug-08 07:38:36

there is loads of useful info on including about diet: what and what not to eat, and also the link between thyroid problems and cholesterol (and insulin) problems

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