thyroid misery

Well, there I was thinking I was on the mend, TSH slowly coming up, 0.24 at last test & due another next week, when wham the palpitations, racing heart & tremors have hit again in the last two days. Not feeling good at all. At this stage I think I'll have to come off the Eltroxin totally for a while & see how things go.
Had planned on going on holiday at the end of September but think that's not going to happen now.

So tired of this roller coaster, it's been going on for over 6 months now. On top of it all my doctor gave up her practice so I'm facing explaining my woes to a new GP.

Sorry about the rant, just so frustrated.

To hgm: There appear to be two different camps of how to treat people that are clinically euthyroid, but have antibodies. One camp says lets do nothing and wait and see, and the other camp is of the opinion that supplementing with thyroid hormones will keep the inflammatory process in check, and they will supplement similar to someone who is hypothyroid. Personally, I believe in the second camp. One of my friends falls into this category and she was put on Eltroxin, is now on 125mcg and is feeling reasonably ok. So there are definitely doctors out there, who treat based on antibody count.
To el.duderino - whilst overdosing with eltroxin is certainly not desirable, it is also well known that we (us hypos) quite often have low vitamin D levels (which is needed for calcium), so without the latter, bone health can be compromised. Often also low levels of other vitamins/minerals are observed, so well worth having these checked out at the next blood test.
To Wyldwood - hang in there, it will take some time to stabilise. From what you're saying you're obviously still on too high a dose and need to reduce down further. I have also read that sometimes our own glands, although pretty much half dead, occasionally spring back to life for a bit and spit out hormones which can cause chaos. I think it might be better if you went to an endocrinologist, as they might test for a few more things to see if anything else is going on. I find GPs generally don't know all that much about thyroid disease beyond T4 and TSH.

I've heard of lots of people who feel much better on a gluten free diet and there is good scientific evidence that hypothyroidism and coeliac disease often co-occur, with an increased chance of developing the other if having one of them. For that reason, although I was not diagnosed as coeliac (I did have antibodies but below what is considered coeliac), I went on a GF diet - I figured one auto-immune disease was enough.

Hello All
an update on my situation. After a not too good week I went to see a new GP today. Her initial reaction seemed to be surprise at the treatment I've received to date, given what I've been through since I shot from hypo to hyper.
She asked if I'd been tested for anti-bodies, answer no, if I was ever referred to an Endo, answer no, how was my condition managed, answer just by TSH/Free T4 test results through GP.
When I had the last bloods done in the previous practice, & results were still way off, the recommendation was to do nothing for 3 months and repeat tests. I could see she wasn't impressed with this but kept a professional silence.
Anyway upshot is I have had bloods taken for antibodies and current TSH/Free T4 and she is referring me to an Endo as I may need beta blockers for the palpitations and radioactive iodine testing to see whats going on with the minute bit of thyroid gland I still have after my surgery many years go.

While I'm not looking forward to going back through all the investigations once again, I'm relieved that finally I might start to feel better again soon.

Well, it depends on how hypo you are really and everyone is different. I started feeling better fairly quickly, but it ebbed off again soon enough, too.
It takes approximately 6 weeks until you've reached a steady state of circulating hormone in the body, so that's why in the beginning you have to wait a good 6 weeks inbetween each dose adjustment to go for a blood test to see where you are with it, and I found everytime I had an increase I felt fantastic for about two weeks and then would fall back into not feeling so fantastic. In the end it took quite a few months before I started feeling reasonably normal, then I developed some other problems and everything went totally crazy, but I think I'm very much the exception than the rule here, most people do fine on Eltroxin, but as I said it takes a few months before you'll know what the right dose is for you. I think the majority of people need around 100-125 mcg, but you need to build up to this slowly and have regular blood tests to monitor TSH and FT4

The latest on my bloods. My new GP took me off all eltroxin about a month ago and since then I've been feeling remarkably better. Still get the odd palp, racy heart feeling but much less frequently and milder. My bloods are improved with TSH back to 2.3, antibodies & T4 in the normal range. Not going on beta blockers for the moment. Awaiting appointment with endo but don't feel it's urgent now. Have more bloods end of Oct just to make sure I'm not going back hypo.

Thanks for all the support and encouragement I got here during the last horrible few months. Hope everyone is feeling well.

That's great news, by the sounds of it your new GP knows what she's doing. Just keep an eye on things so don't slip back into hypo. I had to do the same, come off meds altogether and then very slowly build up again as seemed to have developed some sort of sensitivity towards it, so if you feel anything strange when eventually going back on the meds, keep this in mind, just in case it happens to you, too! Good luck!

Hello happydays5
you need to get copies of your blood results from your GP. Ask for back copies of them so you can see what way your results have been going.
With regard to your thyroid you need to see what your TSH (thyroid stimulating hormone) numbers are, normal range depends on the lab your bloods are sent to but usually 0.4 - 4.0. Free T4, which is the measure of the available hormone in your bloodstream, is usually 12 - 22.
Thyroid sufferers tend to be treated as hypochondriacs by many GPs, if your blood results show that you are hypo, maybe you need to find a new doctor who will work with you.
If you hadn't taken your Eltroxin for 6 weeks and your bloods were ok I would be very surprised if you are hypo. Maybe your low iron levels are contributing. You need to talk to your GP and explain all this to him.

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.

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!

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?

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!!

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?