thyroid misery

Happydays, I would find a new GP and I would buy a book on thyroid conditions. But as a crash course - The thyroid gland produces a number of hormones, the main function of which is to regulate the energy household of your body (so hence, no energy = tired, cold, weight gain, brain fog, etc). The body does this by monitoring the amount of circulating hormones in your blood, if it gets low, the pituitary gland in your brain releases a hormone (TSH) that then tells the thyroid gland to get going and produce more hormones. These are mainly T4 (it's the "storage hormone") and T3 (the active form, it's T4 minus one iodine molecule), and very little amounts of T2 and T1 (the exact role of which are still not fully understood).
So, if your thyroid is defunct (either due to low iodine, or due to autoimmune disease or something else), it cannot produce enough (or any!)) T4 and T3, so hence, your pituitary spits out TSH like mad, in an effort to get the thyroid to produce hormones. So therefore, when your TSH test comes back high, but your thyroid hormones are low, it shows that your gland isn't working. But in terms of how bad things are, you need to look at the concentration of the circulating hormones, T4 and T3. There are two forms in which they are tested, either total T4 and total T3 or Free T4 and Free T3. The latter is more useful, as it tells you how much "available" hormone there is in your blood (the "total" also takes into account hormone still bound to proteins). The majority of doctors will only test T4 (sometimes free sometimes total) and judge your condition by that value, but T3 (as it is the active form) is actually the more important one, so you should ask for a free T3 test.
Quite often, these tests all come back within the normal range, but one still feels unwell, and there is about a million reasons why that can be, so it would be to difficult to go into all of this here, but low iron is definitely a player in this game, so you need to get your iron levels up.
As Wyldwood has said, many GPs seem to think (and have told me so!) that thyroid is very easy to treat so if someone like us comes along with complaints we're being labelled as stressed, depressed or hypochondriac.
Not taking your thyroid meds for 6 weeks is not a very good idea, as these are supposed to remain at a certain level in the blood and T4 gets converted into T3 on demand. Many people I have met/come across swear by taking it very early in the morning and always at the same time. There is some research that shows you get better results taking it at night (that goes for Eltroxin or other T4 only preparations).

In any case, I would try and find a new GP or an endocrinologist (but some of them are just as ignorant as GPs when it comes to thyroid, so tell us where you are and maybe someone can recommend one. I'm in Dublin, so unfortunately don't know about docs in the midlands.
There are also different types of treatment, the standard one in Ireland is Eltroxin (T4 only preparation). But there is also a T3 only product, and there are also natural pig gland derived products (these have T4, T3, T2 and T1 in them) - these are very hard to get prescribed, as they are not licensed and most GPs have never even heard of them. But there are some docs here that do prescribe them, so if that's a route you may consider at some stage there are several people on this forum that can advise on where to go to get them.
What you need to do is get tested for: TSH, FreeT4, FreeT3, TPO (antibodies to see if you're condition is autoimmune), Iron, Vit B12, Folate, Vit D. You also need a kidney function test, a liver function test, blood glucose, and lipids - all of these can go haywire when the thyroid is not working properly. Also good to get your cortisol tested (8AM if possible) - this is to see if your adrenals are working ok.
When you have all of these you'll be in a better position to decide on your next step.

Yes, excellent post there cltt97. So, if anyone new arrives to this blog and wants to inform themselves about the thyroid function, could you please read the entries on the blogs first, and then ask your questions, as many of the answers you may be looking for are already there.

I've just noticed in the last few days I'm getting a twitching sensation on my forehead, usually lasts for about 20 seconds, then goes, and I get it maybe 5 times a day. Its unnerving when it happens. I googled it, seems like there's a link between this and drinking coffee. Now, I usually enjoy only one cup of coffee a day, and its always decaf, so I'm a little bit perplexed, is this another little everyday common treat I'm gonna have to give up? I'll be living like a mormon in no time. Anyone else have this before?

Also, had a little setback with swimming, got an ear infection, which results from swimming a lot and air travel (which I've done a lot lately and noticed my ears aching a lot when descending to land). Now my weight is starting to go higher again. I can't really do much land exercise as I went over on my ankle 3 weeks ago, so I have to be careful with that.

I sometimes get this very central concentrated tightness in the center of my forehead and it feels like a magnet is pulling, and for me it's also due to lack of rest and more so, dehydration - if I don't drink enough (and I never feel thirsty, so it's a real chore) I end up getting this. Never had this before my thyroid saga began... also experiences some weird twitchy waves inside my brain when I went hyper about two years ago, thankfully haven't had that again since, that was truly awful.

Zippy - I get that, too, this total energy zap - but for me this only happens with certain foods and I have to be careful what I eat - especially at lunch time. If I eat the wrong thing or give in to chocolate temptations afterwards, I'm doomed for about 2 hours. I find carbs are very bad and I do much better with proteins. I've also been on a gluten free diet for ages, although honestly I haven't noticed all that much difference, but since there seems a well evidenced link between Hashimoto's and coeliac disease I decided to come off it anyway. The TSH levels don't really tell you all that much, only how well your galnd is (still) working, better to look at your FT4 levels (or even better FT3, but these are hardly ever included in routine testing and you have to specifically ask, and even then might not get!)

Mama3 - may I ask what type of side effects you are experiencing (I've been there myself, so asking out of curiosity and also to increase the pool of information). The thing is, you're not doing yourself any favours only taking it every 6 weeks or so, as it can have a serious knock-on effect on a lot of other functions. I came off Eltroxin altogether for a lengthy period and although I felt reasonably ok energy-wise, I could really see the effect on other things, like triglycerides, kidney function (you do not want to mess with your kidneys!!!), cholesterol, etc, etc.
The thing with Armour, etc is, that it is not licensed here, but if a doctor decided that you need this medication they CAN prescribe it for you, on a named basis (i.e. the pharmacy can only get it for you specifically and only dispense it to you). My GP had never heard of it and didn't want to know and I think no GP would go anywhere near unlicensed medicine without the instruction of a consultant.

Maybe try and keep a food diary, write down everything you eat and note down if you feel good or bad, after a while you will be able to see what has an effect. And re bread, just try and avoid white bread, try go for wholemeal breads, rye breads, breads with seeds, or basically something that is not just empty calories. The prepacked sliced white breads are really just nothing but glue without any nutrients.
Dairy is really hard if you go full throttle, because so many things have dairy as a hidden ingredient, like dried milk powder, etc... so always read the label!

Just like to share a few things.......I've been feeling really well lately, and I think it has something to do with eating spelt bread. Spelt is related to wheat, infact in roman times, all their bread was made from spelt. However, somewhere between then and now, wheat became dominant, and harvesting wheat became dominant, maybe through the mechanisation of farm machinery in the USA.

So, anyways, you might find spelt bread in your local health food store, but don't buy it there since it won't be fresh and it will be expensive. Try your local supermarket or bakery, or even better still, your local market. Spelt and honey bread is my favourite. It fills you in, no burping afterwards, and is high in fibre. So, check it out. I've noticed I'm not hungry at all in the evenings, and this is really a blessing I've been looking for for a long time. I no longer view eating nice food as comforting. Maybe it has something to do with practicing yoga a lot too, but I feel really well in body mind and soul. Considering I was such a mess 2 years ago, there is hope for everyone.

I was diagnosed with an under active thyroid recently. I want to go on the pill but I heard there is a problem with taking the pill and eltroxin. Is there anyone that is in the same predicament as I am?
Can I take the pill and eltroxin together???? I mainly want to go on it to see will it help with my skin breaking out?

Also anybody taking iodine? Has it helped?

Hi Rubygirl as I said before I am on eltroxin a long time and was on two different pills at different stages in my life, before kids I was on minulet (I think that was what it was called) and inbetween kids I was on celest both times I would have been on substantial doses of Eltroxin (up to 400mg per day) and took the pill with no problems or complications. Hope that helps.

To mama3: 400mcg Eltroxin seems a crazy high dose, normally people take somewhere around 120 mcg. So if you needed that high a dose it would suggest that maybe your body doesn't convert the T4 into T3 sufficiently and you may even produce a lot of reverse T3 (which doesn't work), so you end up with all the T4 pooling in your body and not being able to make any use of it. Many sufferers have reported that this makes them quite ill, so in your case it would be vital to get free T3 levels tested. It might also be way better for you to even try a T3 product only. Again, very hard to find someone willing to prescribe T3 products.

Omg Cltt, that all sounds very possible tbh, I started on 50mg at the age of 12 and gradually was increased in line with blood results over the years and by the time I was in my late twenties was on about 200mg daily however having babies seemed to interfere with thing (lol) and went up to 300mg on the first two and 400mg on ds3, the last endo I saw said it was the second highest dose he had encountered personally but agreed that it was what I should be on, he also believed that my cramp/diaorrah problems were caused by something else, hence the tests for all other ailments, and he passed me onto a stomach/digestive specialist (she was lovely but found nothing) and she recommended me going back to endo..... at this point I am totally disillusioned by all the medical brigade and really wish I could find one that would actually LISTEN to me and maybe try something different... Actually my old GP was good but hard to get to see, but might give him another shot and talk to him about T3 only products.
Also do get the heart racing thing but its only now and again so can cope with it, although it can be quite frightening at times. Thank you so much for taking the time to reply to me

mama3, have you got hold of your historic TSH, Free T4 results? Are you sure that you're not over-medicated? I have just come down from almost a year of over-medication and had diarrhoea, racing heart and palpitations among other symptoms (not a nice experience). 400mg of Eltroxin is an extraordinary dose, as cltt97 says, half that would usually be top of normal dosage.

oops posted while cltt97 was posting so duplicate message!!

Haven't been on 400mg daily since last year as came off all Eltroxin after yucky feeling christmas last year and have been on and off 100mg daily since and I do know how silly I am being self medicating but suppose I just gave up ifykwim.

This thread has spurred me into action though and am going to try again as am fed up being either "Foggy tired" or "crampy/toilet bound" which seem to be my options, would like to just find a happy balance... have no idea why my thyroid started playing up in the past few years as it was stable for a long time prior to that. , maybe it was turning 40 and the body/hormone changes that brings in itself.

Am going to go back to my own gp armed with a bit more information and tbh he really is a very good GP but as is often the way, by being so good it also means he is very buzy so not easy to get to see and I hate taking up his time on ramblings, he did look into Armour when I asked about it but just said that he wouldn't be able to prescribe it as it wasn't available in Ireland. Am going to ask him to do the bloods you mentioned and also discuss T3 only meds, think he will want to send me to another Endo *sigh*.

cltt might take you up on that pm, thank you.

God am kicking myself here, of course I am probably going to full strength to fast, why didn't I think of that, tbh because I was on 400mg for a long time 100mg is like a small dose in my mind iykwim. Thanks again this thread is just fantastic, as you all speak english and not in numbers and letters, have been on one or two dedicated thyroid sites but they just get so bogged down in science that I get lost and tend to give up trying to make sense of all the rates, afaik for years the levels that I was monitored on were T4, TSH and free T4, don't think that my T3 levels played a big part. Also going to try and get a copy of my blood over the past few years and see if there is any pattern to them.
Lol I am a bit of a "Monica" so love doing spreadsheets and lists, will be happy to chart my bloods history!!! :rolleyes:

To bored.com - your post got lost somewhere, but in response - the main symptoms of underactive thyroid are usually (singly or in combination)
- feeling cold
- feeling tired to extreme fatigue
- brain fog, bad memory, bad concentration
- loss of hair (sometimes outer eyebrows)
- slow digestion/bloatedness
- joint aches - quite often carpal tunnel syndrome or tendonitis in the feet
- irritability/getting stressed easily
- insomnia
- gaining weight
- and others, but the above appear to be the most common

Not all of these always occur and are very different for everyone. I for example never got brainfog or never felt very cold (which appear to be the most common). The whole weight gain thing is also I think if you get diagnosed quite late and at that stage your metabolism has slowed down big time and then it's hard to lose it and often people will find they finally have stopped putting on weight, but hardly ever lose any just by taking the meds. One of my friends got diagnosed very early and never had any weigh issues, I on the other hand had already put on about a stone and a half at the time I got diagnosed. Also, uncommon but not unusual is that people with overactive thyroids put on weight, when the opposite is expected. So with hormones, nothing is every predictable. Do you know if you have an underlying autoimmune illness that causes the underactive thyroid? It also depends on how "dead" your gland already is, if it is still functioning reasonably well, then it can still even out the "dry spells" (from not taking the hormones) but that might aggravate the autoimmune reaction, so try and stick to taking them regularly - first thing in the morning or last thing at night, it's a bit like playing roulette with the body when following an on/off medication regime. When did you have your last thyroid function test, and do you have your readings?

bridgy67,

Look at your diet. I noticed a huge difference in my feelings when I starting eating more fish. Eat fish 4 times a week. I really love fish so it was easy for me to choose to eat more. Cut back on red meat. Don't eat fried food. Cut back on caffeine, take herbal teas and green teas instead. All I can say is that it worked for me.