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

[margoandjerry]

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?

misi, you have been really informative here. I have just stumbled across this post and you really know your stuff ! I had an overactive thryoid that went into remission. Then when I had my first child it came back a few months after he was born and was so bad that i had radioactive iodine. I have been on thyroxine ever since. During my pregancy with my second son I went from 125mcg to 200mcg and then when he was born ( 1 year ago) I went back to 125mcg. 6 months ago I started have problems as was feeling very hypo and now my daily does is 175mcg. I dont understand why I suddenley need more. endocrinologist thinks it is some kind of post partem auto immune response ( that will subside) but I am still on 175mcg now. I am back to pre pregnancy weight and am pretty active. I have started seeing a herbalist who is great but I haevn't been able to reduce my dose yet. I am confused about what supplements to take and depressed that I need so much thyroxine. I have done several 'detoxes' and generally eat healthily but to no avail.

Bumperlicious 2.5 TSH for a hypothyroidic person is too high really. any decent knowledgable endocrinologist will keep you below 2 and some down at 1 - 1.5

T4 is the inactive form of thyroxine that floats around your body minding its own business having no effect on anything. when you body needs to be more active, a signal is sent out via more hormones (TRH and TSH thyroid stimulating hormone and thyroid releasing hormone). this signal is picked up by the liver and cells and T4's are grabbed from the blood, shot at with a selenium molecule to remove one of the 4 ''legs'' of the T4 to turn it into an active T3 which then goes away to do its stuff. most hypothyroidism's are the inabality to produce enough T4 which is why T4 as thyroxine in pills is given. some though have the inability or reduced capacity to turn T4 into T3, you can get rT3 as a result (reverse T3 which has had the wrong ''leg'' removed) or that you just cannot convert enough T4 into T3 for various reasons (like selenium deficiency).

mousemole, you will have a different set of probs as you were hyper but have been made to be hypo by destroying your thyroid tissue. this is done sometimes in preference to prescribing anti rX drugs that inhibit thyroxine formation. 175mcg is a very high dose. the average for a man is 150mcg and for a woman 100-125mcg. so there is something else going on with you in my opinion. sudden needs for increased doses is common but rarely prescribed as hormones flucuate wildly sometimes. if you have had this need to increase and have had to stay on that then your endo blokey should have done a full thyroid panel test to check on the other thyroid hormones but most rarely do as most endos know not a lot about thyroids.
if you are with a herbalist, then let them take you through this but ask if they are up on hypothyroidism. my ex is a herbalist but knows very little about it or what you can do. I caught her once advising a customer to take kelp supps (for the iodine) who was on thyroxine. needless to say I stopped her from doing so as that would be dodgy to say the least and an argument was had later that night
I have mentioned on posts before, I cannot diagnose or treat over the net, face to face is needed as full med history is one thing we need to see what is going on with you as a whole. but as digestion is usually sluggish in hypo's a good multi vit without iodine is usually of help and a selenium supp for a year of around 200mcg per day can be beneficial, magnesium is helpful to hypos too but as a woman magnesium will be especially helpful to you for many other reasons too (mag is used in energy production AND hormone production especially female hormones. it also has a role in waste removal but I am have not read enough about that side of it yet. check this out with your herbalist, don't self med unless you are absolutely certain and have read up widely on this. if in doubt, I won't tread on your herbalists toes but I will answer any queries you have.

forgot to ad, hypos have detox problems as the removal pathways are often sluggish. get your doc to test for CPK in your blood and I bet that it will be high. 140 in normal for a woman, 180 for a man, mine has been as high as 1180 but never lower than 275, it is stable around 330 now which is too high but not much else I can do. CPK is the waste product of energy usage, the coal ash from a fire grate if you like. if not removed, it bunmgs up the cell and stops it functioning so well leading to tiredness, aches and pains and sluggishness!! I use 1000mg of MSM daily (after a theraputic dose of 3000mg a day for 6 weeks) to keep my levels of CPK down

Hi Misi
Thanks so much for all your information. You are so kind and sooooo knolwedgeable.Finally I am begining to understand a bit more, although even I knew Iodine was bad !
My condition was diagnosed as Hashimotos Thyroidits as during the second bout of overactivity ( after my second son) I also had 2 phased of being hypo. Basically I was swinging about all over the place and was a mess which is why I went the RAI route - to gain some kind of control. in hindsight I think I was hasty but at the time with 2 young babies I just wanted to feel WELL again. My endo did do t3 and t4 and they were all in the middle of the normal ranges. Only thing he didnt test for was anti bodies. I also had a liver funtion test done and all was normal - cholesterol at the higher end of normal but I have known that for years. My herbalist seems to have a pretty good knowledge but not in the same league as you. I have also had a female hormone panel which came back as totally normal ( progesterone, oestrogen etc) as well as an adrenal test. I am devastated to be on such a high dose of Thyroxine. I am 5ft 9, 11.5 stone and well muscled due to exercise so I am not a tiny person but even so...
I have just been out to buy Lecithin - how much do you think I should take ? I will start on 200mcg of selenium asap as well.
What is MSM ? Expect I need it as I am sure my pathways are sluggish too despite detoxing and enemas etc ! By the way where are you ? We are about to move to Edinburgh.... !

misi, this has been extraordinarily helpful. Thank you for taking the time.

If anyone can recommend a fertility-thyroid person in the central London area or a herbalist with an interest in these areas so I can take this further, I'd be very grateful.

mousemole, I am in essex.

lecithin, a standard maintainance dose would be 1000mg of normal lecithin in an oil based capsule (these are a bit like torpedos but you can get a concetrated type from under the brand optima which says it is 500mg but has the power of 1000mg and is a much smaller sixed pill) you can also get lecithin granules to sprinkle onto your food, no taste, some say a bit nutty but I can't taste that and my dog has granules on his brekkie every day without fuss I personally started at 1000mg per meal (even if it had no fat in it) and went up to 2000mg after 5 days, kept it there for a few days then came down to 1 after each meal but 2 if it was a particularly heavy meal (like when I make my own pizzas with extra cheese, pepperoni etc )

ok for the 200mcg selenium its what I took for a time to biuld up my stocks and now I only take 1 or 2 200mcg pill per week just to be safe.

not sure what else is going on with you then as my knowledge of hyper is less than that of hypo.

MSM is methyl sulphonyl methane (no not a petro chemical!!). it is a natural sulphur compound that is vital to health (as is sulphur in itself as it is a major detox element which is why garlic/onions are good, the sulphur content) for me, I use it as it helps exchange CPK (creatinine phosphate kinase) the waste product of energy usage from the cell to the blood stream for final detox and removal. it is also a vital componant of joint tissue so it helps with all those aches and pains too. I also use it on clients who are giving up smoking as it helps clear the lungs of pent up goo and toxins!! One coach driver came to see me who needed to stop smoking. he did not want nicotine patches etc, so we decided he would just stop and take other things to help him through. this consisted of many detoxing herbs, liver support and general energy boosting nutrients. I also gave him MSM as in a lot of people it not only clears the lungs but helps with the cravings too. after a couple of months we had a full consultation and he said that since stopping smoking he had noticed his joints feeling better too, he hadn't told me about this before but the MSM helped that too. (and 2 years later he has never had a single ciggie).

margoandjerry, if you go to the NIMH.org.uk website, you can enter your postcode and get a list of NIMH accreddited herbalists in your area. you can e mail the NIMH as well to ask if they know of a herbalist with the experience you need (National Institute of Medical Herbalists). I know of a homeopath over by heathrow that is a fertility ''expert'' and knows much about conception probs etc, she is the best friend of my ex though, but if all else fails, I am sure I can find her details or ask my ex if need be? but try the NIMH site first

misi, such incredibly useful info! i am very lucky to have a gp who is very much oin the ball when it comes to thyroid problems: he tested me for TSH, free T4 and thyroid antibodies, all of which initially came back abnormal. here (cambs) the hospital has the policy not to test the t4 (and t3) if TSH comes back normal. i have been trying to get mine through anyway (because i have the feeling i might be one of those patients who cannot convert t4 to t3 efficiently). interesting what you said about the selenium. what's high in that, if you wouldn't want to take supplements?
actually, i hope you don't mind me highjacking your thread M&J. but misi, do you know anything about a link between progesteron and thyroid problems? i was (on two different brands of) minipill a while back, and was sent into the worst hypothyroid episode i've had un years. would be most grateful if you could comment!

not heard of any link but not to say there isn't one in some people, will have a look.
what I can say is that where oestrogen is the female hormone of growth, progesterone is the female hormone of well the opposite of growth but can't think of the word at the moment
every hormone is interlinked with each other. the endocrine system is a finely balanced system. often if one hormone goes out of kilter, the rest do at some point to to either compensate or as a reaction.

ah read this already just now but will read more later;

Thyroid abnormalities can create menstrual cycle problems, even infertility, in younger women; in perimenopausal women these problems are often exacerbated. Thyroid is related to reproductive hormones in two ways. First, thyroid hormones regulate metabolism, which is often mistakenly thought of as how fast you burn up calories, but is actually defined as "the activity of the cell." Different cells, such as brain cells, bone cells and ovarian tissue cells, have different activities. Thus thyroid affects many physiologic activities of the body, including reproductive gland activity.

Secondly, thyroid hormones have similarities with certain metabolites of estrogen and progesterone, and receptor sites for thyroid uptake can be blocked or facilitated by estrogen and progesterone. Imbalances of thyroid hormones T3 and T4, combined with imbalances of estrogen and progesterone, can produce many different consequences in the areas of mood, temperature regulation, fluid retention, energy and sleep. It's sometimes very difficult to answer the question, "Is it my thyroid, or is it menopause?"

ah, I think that may be your answer, above where the para starts, secondly

oops, selenium can be found in wheat germ, bran, tuna, onions, tomatoes, broccoli, kidneys and whole wheat bread. these are the best sources of selenium in foods but will not be able to build up stocks very well but will be invaluable for maintaining levels later

how interesting! thanks so much for checking for me! being on those minipills was a horrible experience: my periods were all over the place (continously, or at least far too frequent), and i got the terrible brainfog exhaustion and constipation that i usually get when i am hypo. which actually reminds me that i should probably have my bloods checked now, because i am feeling like my balance is slightly off (getting exhausted and forgetful).

also interesting about the "Is it my thyroid or the menopause": my mum was just diagnosed with a thyroid problem, and her gp said that many hypothyroid women are fobbed off by their gps as going through menopause.

yep, thats true, had many a woman come to me straight after they came from their GP. luckily the three GP surgeries in the town all knew me and 2 would often send people to me for help which was good. (the third was a bit of an old dinosaur)
they say that 90% of all medical and psychological problems can be traced back to hormone or digestive causes and as both affect everything your body does, it does get very complicated diagnosing things!!

Thanks for all the info misi. Just out of interest, should I be referred to an endocrinologist as a rule? What do I have to do to get a referral?

yes, you should have been referred to and endo by now as GP's are not equipped and experienced enough for diagnosis and initial treatment especially with being hyper and hypo like that, only when you have been stable for 2 years (my endo says) should you be discharged from endo and go back to your GP for maintainance treatment. (I have been with my endo for 7 years now, I do flucuate somewhat but he keeps me there for info he says )
referrals come from your GP. you cannot see an NHS endo without a GP's approval. I had assumed from your posts that you were already under the endo, now I know why your doc said 2.5 was ok
only thing I can say is ask to be referred and if your doc says no, ask for a second opinion as clearly you are not being treated correctly. my GP was good and bad on this. I had been having blood tests for around a year to find out what was wrong, I knew it was hypo by this time as I had read up on it. on dec 17th I went to his surgery, sat in the chair, and said I was not moving till he ordered a TSH test. he said that the T4 tests had all come back ok and it wasn't thyroid. I said he would have to call the police as I was not moving. after a fuss he gave me the test form. that afternoon I went to the hops for the test, on dec 27th I got a phone call from the hospital to tell me an appointment had been made for me by my GP, worried I asked when and what for, she said at the endocrine unit for tomorrow. so he did act very quickly in the end shame it wasn't 12 months earlier though. (my TSH had come back as 8.9)

Interesting reading all this. I have the opposite problem in that my TSH is about 5 and t4 18, doctor keeps telling me to up the dose of thyroxine but I can't. Even if I add in half a 25 ug tablet a day I go into orbit after a few days and feel racy, jittery and totally spaced - really scary feeling like I am losing the plot..

TSH of 5 is far too high and an extra 25mcg every day should not be enough to cause the symptoms you say let alone only 12.5mcg. with those figures, I would suggest you need a full thyroid panel to check out the other thyroid hormone levels. 18 T4 and 5 TSH may suggest a T3 conversion problem but that would not explain the orbital experience you have so for once on a thyroid issue, I am a bit stumped
will have to have a read about this!

i am so glad that i have a good gp!
i -like you misi- went in suspecting that i had an underactive thyroid, as i had all the symptoms. bu unlike yours, my gp was on the ball from day one: gp agreed and gave me a thyroid test there and then. tested for the whole battery (tsh, t4 autoantibodies, although not t3) and tsh came back at 14, and t4 "low normal". he put me on thyroxin immediately (i was stable within a year

Misi
Thanks so much for your wonderful help.Its a shame I am moving to scotland in a couple of weeks as am currently in Surrey and could have driven round to see you ! M and J, sorry for hijacking your post. Have you ever heard of Zita west for fertility ? I have heard great things about her.

here

My endo is Mark Van der Pump who I see in London who I have been very impressed with on the whole. Saw a rubbish one before that who seem to know less than me ! he is a lecturer for the Thyroid Association and is often on radio so is well regarded in the field. I do think treating the whole picture is good - with nutrition etc.

Thanks Misi, would appreciate some advice as I have been struggling with it all. A lot of days I feel shaky and weak mid afternoon too...

doodledandy, as a matter of course, my endo always tests for diabetes too as this is an increased risk with thyroid probs, have you been tested recently?
as thyroid conditions usually increase the need for insulin, this can sometimes lead to poor glucose control which may explain the mid afternoon wobbles. when you go on a higher dose albeit only 12.5mcg, this may correct the insulin requirments and cause a sugar ''high''.
I am speculating at this point I must say but there is a causal link between women, diabetes and thyroid probs so if you have not been tested for diabetes, get tested as soon as even if it is just to rule it out

all hijacking good! There's been some great info sharing on here.

I do know of zita west - she originally picked up my thyroid antibodies problem that led me to uncover my general thyroid problem. Perhaps I should go back there for another workup but I contacted the NIMH as misi suggested and now I'm going to see Jean Beaton in Harley St on Monday. Quite looking forward to it actually.

Thanks to everyone who has contributed - I have learnt a great deal .

jean beaton is good margoandjerry

AM DOODLEDANDY, HAVE CHANGED NAME.
Thanks misi, will get checked for diabetes. might make sense as I had a really bad eating disorder when I was in my 20's and used to binge on tons of sugar and I was addicted to nicotine losenges for 5 years until last December , which is when I started to feel weird (thyroid treatment was fine before that, not a problem).

just resurrecting this to ask a quick question - I have my blood test tomorrow. Am on 1.50mg of thyroxine daily. Last blood test, my TSB was 4.9 and because it came under the magic 5, my GP had it listed as 'normal'. I had to ask for an appointment and ask that my dose be raised, as I still really struggle with tiredness, weight gain, and ENDLESS viruses. So dose was raised to the 1.50.

On this dose I have felt, say, 40% better but still get utterly exhausted sometimes, and still finding it nigh on impossible to control weight. Still having more viruses than in the past, but definitely less than this time last year.

So if my TSH is still higher like last time, do I ask to go up another dose? Or would it be worth asking for a referral to an endocrinologist? Would they be able to hit on THE dose for me or would they just keep on jumping up by little bits as the GP is doing?

TIA - this just seems such a long, long process to get things right and I'm getting fed up.

a tsh of 5 is no where near normal and no half decent doc would say it is, maybe the GP should read up on thyroid conditions before he goes saying 4.9 is normal, hes a bl**dy fool!!
you should be under an endo anyway as most GP's are not equipped or trained for endo probs other than diabetes and then most diabetics are under the hospital anyway.
if on 150mcg of thyroxine, your TSH is still above 2.5 you need to see a specialist as a good dose for a male is 150mcg so the average female should be on less and the average dose is around 125mcg.
I would suggest you demand to be referred or ask for a full thyroid panel as something is clearly not right with the readings you are getting with the dose you are taking. do you know what your T4's were? if you do and they were above 18 with a TSH of 4.9 it is not a standard thyroxine (T4) prob. if you can get a full set of bloods done (thyroid panel), you can tell whether you have a T3 conversion prob, pituitary prob, thyroid prob or the other type that totally escapes me at the moment and to be honest, a GP with knowledge of thyroid probs should have done this by now given your results.

Were you thinking of a hypothalamic problem -Misi?
By the way many GPs and hospital doctors are not allowed to order a full thyroid panel by which I assume you mean T3 and TRH with thyroid autoantibodies as well.

The labs will typically veto such requests unless they come from Endocrinologists - depending on where you are.

thats the one

didn't realise GP's weren't allowed to order full thyroid panels anymore, how pathetic is that?
yes, all those that you mention madcol with rT3 as well, so I guess then HonoriaGlossop thats your answer, you need to be referred so you can have the proper test done to work out what is going on. if the answer is no, demand a second opinion. if denied a second opinion or the 2nd opinion is the same as your GP, I personally would write to the PCT or whoever they are now and complain, but then thats me . I sat in my GP's chair and told him he would have to call the police to remove me unless he wrote out a blood test form for a TSH test after he had spent a year doing Tft4 only and telling me my thyroid was ok and that he had no idea what was wrong, of course I knew I had a thyroid problem hence the sit down protest. blood test 17th dec, got phone call from GP on 27th dec in the afternoon to be told an apt had been made for me the next day at the hospital with the endocrinologist, he moved quickly once he realised he had been wrong but never got an apology out of him