Do YOU think this test result merits treatment?

[Chancery]

I was gobsmacked today to get blood test results showing I am 'subclinical hypothyroid'. Not a result I was expecting.

My actual results were TSH 5.2 (highlighted as high - 4.5 was top of range) and my free T4 was 10. This is normal, but on the low side as the bottom of the range is 9, so not galloping into normal by any means.

The GP I saw - not my own - was of the unspoken opinion that if I was showing symptoms I might want to consider treatment, although she was at great pains to point out that "we wouldn't normally consider this result as needing treatment". She said I should discuss it with my GP, who, frankly, I fight with too much already. I really do not want to take on another fight if this is really a 'healthy' result.

From other conditions of mine, I frankly no longer trust the NHS's opinion on what is normal in blood tests, so I am concerned as to how seriously to treat this, so thought I would come where there is probably a more accurate appraisal of thyroid blood tests!

Unfortunately I take medications that make me very tired, so I can't go by tiredness. The 'only' symptoms I have that fit hypothyroid are depression, slowly worsening for many years, apathy, likewise worsening for many years, chronically itchy skin, of many years standing, very badly ridged nails that split and break constantly, likewise of many years standing, chronic constipation that can take on lentils, broccoli, wholewheat and sultana bran in the one day and still not be moved, and itchy eyes and ears that just won't quit. EVERYTHING in me itches. I'm sure I have other symptoms tucked away that might fit, but I'm not interested in making things fit, just what I believe to be genuinely relevant.

I shall also put in for the record that I also have a neurological condition, Trigeminal Neuralgia, probably related to a B12 deficiency.

So, many experts on here, what do you think? A serious issue, or a storm in a teacup not worth engaging over?

[Clutter]

Chancery, Over range TSH with bottom of the range FT4 is not a sign of a healthy thyroid gland and does need to be taken seriously. Signs and symptoms, which may cross over with co-morbidties, are in this link thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[Chancery in reply to Clutter]

Many thanks, Clutter, I appreciate that. Yes, the book I have on the subject - a reputable one - says that it is a sign that the thyroid is damaged and can no longer cope. That does seem rather damning.

Thanks for the link; I'm grateful for any hints and clues as to where this may be leading - I'm just going to have a look now.

[Chancery in reply to Clutter]

Yes, just had a look. Sorry to say some sections I can tick every box. Couple I don't have - like the hair loss (I wish, as regards body hair; I'm growing a fine moustache and beard!), but otherwise, yes, a dismaying amount of them. Doubtless, however, my doctor will say they are too "vague" to be relevant!

[gabkad]

In my unprofessional opinion, you need to be treated for thyroid insufficiency. Please also check your iodine and selenium intake. Are they enough?

My attitude to vitamin and mineral supplementation is just do it. You can't kill yourself with a B complex plus sublingual B12. And you can't kill yourself with taking 2000 IU of vitamin D3 every day. Plus if you eat no liver, the iron, zinc, copper are essential. Magnesium can be taken as an amino acid chelate. So can calcium. Sometimes things like coenzyme Q10 strengthens the heart ( i have not noticed anything but <shrug> it's supposed to help.) Pills ARE cheaper than food of dubious nutritional quality. Make sure you get enough vitamin A. That's important too. And vitamin C. If you can get vitamin K2 take that as well. A, D, and K2 work synergistically.

Analyze your diet (easy to do with Google) and find out what you may need to improve. If this is work, don't worry. You are worth it.

[Chancery in reply to gabkad]

Thank you, gabkad, I appreciate your "unprofessional" opinion greatly - it's certainly no worse than many of the alleged professional ones I've been given!

I am already on B12 shots, I should have made that clearer, sorry, but I do take on board what you say about other deficiencies. It was something I was thinking of suggesting to my doc to have tested. I just know he'll be thrilled by that idea!

[gabkad in reply to Chancery]

Let him be thrilled. YOu want to be a healthy, productive member of society so you need to know where you stand so you can get better.

[Chancery in reply to gabkad]

And so say all of us! I couldn't hire you to come to my doctor's with me, could I?

[gabkad in reply to Chancery]

Alas, it costs a return plane fare. But I have accompanied people to the hospital. Doctors get on my nerves.

[Chancery in reply to gabkad]

Oh, don't worry, they enrage me. Sooner or later I will push mine off his chair, if he doesn't push me off mine's first.

[Jodypody in reply to Chancery]

Change your GP quickly. Life is stressful enough without having to tolerate that kind of treatment. Where are you?

[Chancery in reply to Jodypody]

Oh Jody, I would, if I could be sure of getting sympathetic treatment with anyone new, but I have too much at stake now. The B12 treatment I get is on sufferance because I have a rare condition (trigeminal neuralgia) which doesn't merit B12 treatment but I managed to get my doc to give me it, with great success. Unfortunately that success is not considered valid so I can't be sure another doctor would allow it. I cannot face the possibility of refusal.

If I could poll doctors first, that might be a solution. Can't see that happening though!

He's really not an atrocious doctor - after all he DID give me B12 treatment, after a fight - but he does frustrate the hell out me. A feeling that is entirely mutual, I'm sure!

I'm in Edinburgh, by the way, so if you do know of anyone up my way I'm all ears...

[Jodypody in reply to Chancery]

Is there a chance you Could afford a private appt with an NHS Endo? If you do this you can be prescribed treatment but still get it on NHS. I managed to get a referral from a sympathetic GP and my TSH was 3.28. You are out of range and your T4 is also low. Mine was 9.6 and I've definitely benefitted from treatment. My T3 was also below range. You've got to find a way to get treatment as it will only ever get worse. It's u forgiveable how people are expected to wait so long before treatment x

[Chancery in reply to Jodypody]

Afraid not, Jody. Going private isn't an option for me - not if I want to eat or wear shoes! But my doc hasn't seen these test results yet (that I'm aware of; he's on holiday), so he may be (im)perfectly amenable to a therapeutic trial. As I've said elsewhere, I'm not in a hurry to rush into treatment so that does give me the advantage of being able to break him in slowly to the idea. He's better if he has time to get used to it!

A couple of times when I've fought him on issues, he throws the 'this is a normal result' card at me. I wanted to run the result past the 'in battle' experts on here to see if it was worth engaging in that fight and to get ammo to face him down if push comes to shove. Who knows, he may surprise me and be happy to treat me. (She says, with more optimism than evidence!)

[Jodypody in reply to Chancery]

There are plenty of studies to suggest that anything above 2 isn't normal. 1.5 is the average TSH of a healthy specimen. In the US they have reduced the parameters and I believe Hugh Laurier is fronting a campaign to reduce it further. Google as much as you can and get prints to take

[Chancery in reply to Jodypody]

Yeah, Jody, that's going to be the way to go. I've been very fortunate in getting these results from another doctor - it's given me time to think it through and arm myself to get what I want. I always go armed to the teeth with highlighted articles. Only way to win!

[Hidden in reply to Chancery]

What's your ferritin level?

[Chancery in reply to Hidden]

Hi Aspama, I honestly don't know. In all the blood tests I have, I appear never to have had it measured. I don't even know what it is. A posh name for iron, by any chance?

[Hidden in reply to Chancery]

Serum Ferritin is a measure of iron stores.

Iron is a double edged sword - it is bad if you have too little, and bad if too much. So the body puts iron it doesn't immediately need into a store.

If you have underlying infection or inflammation it will put more of the iron you eat into store (think of ferritin like a pantry for iron). That's because infection and inflammation feed off iron and the body puts iron into storage to help starve out the bacteria or viruses.

But so long as you remember the above, ferritin can be a useful measure of your iron health. Around 80 is maybe optimal, though I haven't seen any robust studies on what is optimal - others posting here may have.

Anyway, the reason I asked is that itching can be one symptom of anemia and so it maybe also could be flagging up low iron, short of anemia. Which GPs aren't so alert for, but which can have big effects.

Have a google on itching/low iron, see what you think.

[Chancery in reply to Hidden]

Thank you, Asp, that is a very tempting line of research. I'll look into that straight away. My itching is aggravated by being outside too, possibly in the cold (not sure of that). When I come in from being outdoors, the whole of my body itches, from shoulder blades to calves. HOWEVER, important caveat, that COULD be simply that's where my clothes are rubbing! Anyway, thanks very much for that - putting it on my to-do list.

[Hidden in reply to Chancery]

Check cold urticaria too. More usually thought of as producing hives, but apparently itching can be a symptom.

You'll obviously be using non bio... ? Just in case.

Hmmm. Interesting. Please post if you crack it.

[Chancery in reply to Hidden]

Hi Aspama, I've never heard of cold urticaria. I suffer from chronic urticaria and have it from spring to autumn round both ankles and occasionally my chest. It's one of my other autoimmune 'credits'! And yes, been using non-bio powders (and scentless soaps and deoderants and, and and...) for years. Doesn't stop the bloody itching though!

But cold urticaria is a new one to me; I'm totally looking that up! And I looked into the iron thing and checked all my blood tests. It's never been measured, so yes, that could be part of the problem. Many thanks yet again. It's not often people come up with stuff I've never heard of, but you've been a true font of knowledge; I appreciate it.

[Hidden in reply to Chancery]

Ask your doctor to check your thyroid antibody levels. And if he/she won't get them privately tested - I've used Blue Horizon, there are probably others - you don't need to go through a private doctor. It is expensive but you have something quite important going on they haven't even begun to try to identify, let alone fix.

You need to get to a consultant with a working brain. There is some kind of immune or auto immune reaction going on and some kind of avalanche effect. I would guess. Not that I am a doctor. And it sounds like you will have to diagnose yourself and tell them what is wrong with you in order to get help, and you will probably need to tell them which consultant and which hospital to send you to. Because almost every message on Health Unlocked spells out that - the system don't work on its own.

xx

[Chancery in reply to Hidden]

Yes, Aspmama, I'm on that! I decided that I don't want to rush into treatment, instead I want to check for thyroid antibodies to see if my body is attacking itself. I think that's more important here. After we have that info we can make a more informed decision.

I should be able to swing a test simply by talking about treatment first then telling my doc I don't want it and want a test instead. He'll hopefully be so relieved he's not going to have another fight with me he'll give me the test!

[humanbean in reply to Chancery]

You may be on B12 shots, but if you live in the UK I've read many times that people only get shots once every 3 months. And for lots of people that simply isn't enough. So before you get your next shot, ask for your B12 level to be checked. You need to know whether the frequency of your shots is the right frequency for you.

[Chancery in reply to humanbean]

Hi Humanbean. No, I think my shots are okay. I get mine once a month and, so far, they seem to be keeping the Trigeminal Neuralgia under control, so my guess is they are about right. Anyway, there is NO way I could get them more frequently. I more or less had to get dispensation from the Pope to get these, and I know I am well off because even lots of people with anaemia can't get them this regularly - poor things.

My doctor thinks the results I get from B12 are a placebo of, frankly, miraculous proportions. He wouldn't humour me with any more of them!

[Hidden in reply to Chancery]

Like Gabkad says - just supplement. Don't have the fight over testing for vits and mins. Save it for when you really need to have it :-). Also bear in mind that ongoing ill health (even more of which than you currently suspect may be down to a failing thyroid) can stress your Adrenal glands. If they are not functioning well, then nor will you. And it will be difficult even with thyroid meds to bring your level of health and fitness back up until your Adrenal glands are in good fettle. The fight with the doc may be worth having over a cortisol test for your Adrenals. Or, again, you could just supplement. There are a variety on the market. I'm not allowed to suggest companies or outlets, sadly. But you can get them in all kinds from actual glandular extract (pig, I think) to vegetarian. If you'd like me to name some names of producers and/or outlets, PM me.

Feel better. x

[Chancery in reply to Hidden]

Hi Humphrey, I've often thought I should test for poor adrenal function but I wouldn't know where to start, or what to ask for, and frankly I am frightened of my doctor's response. Adrenal function seems to be chanted about on so many 'crank' sites that I fear it would get his 'bad science' radar going. Also I'm not sure how adrenal function would impact on, or what part it could play in, my various conditions.

This is obviously something I need to read up on, because I am far too ignorant!

[eeng]

Have you tried taking something like piriteze (an over-the-counter antihistamine) to see whether the itching improves? If it does you are possibly reacting to one of your medications or the fillers in one of them. Some medications are available in alternative versions with different fillers, so you may be ale to do something about it.

[Chancery in reply to eeng]

Hi eeng. No, I've never taken an over the counter antihistamine, but the sleeping tablets I use are an antihistamine (OTC), I believe, and they do nothing to help, so my guess is that wouldn't be very useful. Additionally, I had the itching long before I was on medications. I've had dry skin since I was a teenager and itchy dry skin since was in my late 30s, I'd guess. So a long time. It's got worse of recent years, which I put down to menopause, but my guess is now that the thyroid might be a more likely culprit.

But thanks very much for the suggestion - there's always the possibility of someone uncovering something you hadn't thought of.

[Hidden]

I started self treating at 3.7 TSH. I was utterly fed up with ' youre normal, here are some antidepressants, moisturiser, weight loss meds and lose some weight and exercise'.

I'm still not optimal, because of adrenal problems and scraping the bottom sex hormone problems. But at least I am now in control of my health, rather than letting a doctor keep me sick because of their 'Ranges' that they don't even treat to anyway so whats the use of having ranges?

I too have the excess weight, the dry skin, the itchy ears (that send me batty), sinus problems, the darkest depression that thankfully is now gone and probably another dozen minor but ignored symptoms. The depression was the quickest one to be relived.

[Chancery in reply to Hidden]

Hi Hismum. That's good news about the depression being the first to go. If I decide on treatment I hope I follow your example! Although I confess the itchy ears sometimes make me want to stick a knitting needle in there, so that's a close second.

That's surely unusual to start treatment while you were technically 'normal'? What made you so sure that thyroid was your problem? Did you have it in your family, or did you manage to get a therapeutic trial that convinced you it was the way to go?

[Hidden in reply to Chancery]

I have had a high TSH level for a long, long time. Plus my Mother and Grandmother were thyroid disease sufferers. I also know what proper treatment of thyroid conditions consist of, and its NOT what British doctors know about or are doing anything about. The last appointment with my doctor just nailed it. He referred me to a psychiatrist for a treatable, testable medical problem. I was lucky that i took my husband with me, as that was the first time he had seen how badly I was being treated about my thyroid (you're overweight, you're a carer, you're post menopausal, you are obviously depressed (actually very frustrated) heres some antidepressants). The doctor wouldn't even give me a trail of levo.

So the next day hubby ordered me some NDT online from a reputable seller (I got a years supply for £69) and I started self treating the next day according to the STTM protocol.

I was also advised to check out my adrenals which showed problems with high cortisol and a below range DHEA level, which accounts for my very low estriodil and testosterone. I'm self treating that too, as the NHS doesn't even treat DHEA levels.

I also used the adrenal saliva test on my grown up son. It showed he has Cushings Disease, which the NHS has ignored for 15 years, even though he has ALL of the classic physical symptoms. I went in with him and showed the test scores to a different doctor, he was given a referral to an Endo immediately. That alone was worth the £60+ it cost me. But it does show that when you have or suspect that you have a chronic condition you HAVE to be your own health advocate because the NHS doctors and Endo's really know nothing about most of the hormones, and iff need be to regain your health you need to self treat.

Endo's in the UK DO NOT take any tests or exams on thyroid conditions. All they have to do is read a few pages of a text book written 40 years ago and if they missed the lecture when the thyroid was discussed you end up with a British Endochrinologist!

[Chancery in reply to Hidden]

Oh, I know what you're talking about, Hismum. There is nothing more soul-destroying on this planet than when you are trying to show your doctor how you believe your symptoms relate, or tell them something about suspected connections in your family and they just look away with that face that says, 'Oh no, not another one'. I find this doubly hard to tolerate when THEY use family history as a diagnostic but somehow when you bring up a grandmother and all her sisters, or your father and all his brothers, with a relevant illness, it doesn't count. What kind of crazed logic is that? It's not as if you make up symptoms just to fit. Well, some folks maybe do, but most of us are actually quite sane, just struggling with doctors that won't listen! (You should tell yours you'll need a bloody psychiatrist soon if he doesn't stop messing you about!)

I admit I have NO idea what an endocrinologist does, other than study glands. Although I had a grandmother with thyroid problems (and all her sisters were the same), I've never really believed I'd have a problem (despite my mother telling me with great delight from the age of about 14 that I had a problem). It was tested about 7 years ago, maybe, but the doc told me I was "normal" and I just accepted it. I never saw the results. It does make me wonder now what they actually were! But no, I wouldn't know what to do with a referral to an endocrinologist - too early days for me yet!

[helvella]

Complete achlorhydria occurs in more than half of myxedematous patients. As many as 25 percent of patients with myxedema, like those with Hashimoto’s thyroiditis, have circulating antibodies directed against the gastric parietal cells. This finding explains, at least in part, the frequency of achlorhydria and impaired absorption of vitamin B12. It is reported that up to 14 percent of patients with idiopathic myxedema have coincident pernicious anemia.

thyroidmanager.org/chapter/...

This is not quoted from a renegade, "alternative" source - but a very conventional site which has been written by some of the more respected thyroid experts.

[helvella in reply to helvella]

In case anyone who has Graves is hoping to escape:

It is possible that thyrotoxicosis may increase the need for vitamin B12, as shown experimentally, and perhaps for folic acid. Also, there is an increased incidence of antigastric antibodies and mild pernicious anemia in patients with Graves’ disease.

thyroidmanager.org/chapter/...

[Chancery in reply to helvella]

Thank you, Helvella, that's good, substantial information. It's obviously out there and now I know where to look. That's cut down my work tremendously because now I have a sense of direction, which is invaluable, so thanks again.

Once I'd looked all those words up in the dictionary (!), I got the gist of it and discovered my friend the parietal cell again. As chuffed as I was to see my favourite horse, I'm not sure if the antibodies they are referring to are Gastric Parietal Cell antibodies - I'm guessing yes? In which case I've been tested for it an found negative. Does this mean I am unlikely to have low stomach acid, or am I barking up the wrong tree here?

[Chancery in reply to helvella]

Sorry, me again. I've just noticed they say it explains low stomach acid "in part". That means, I'm guessing again, that being negative for Parietal Cell antibodies doesn't necessarily prelude having low stomach acid regardless. I definitely need to do more research here - thanks!

[haggisplant]

Ferritin - itching - I've had an awful time with itchy bones which turned out to improve no end with iron tablets. My ferritin was only borderline low - 55 - and I'm waiting to hear the latest tomorrow, but I know I'm lots better. May well be worth exploring. My iron levels were a tad over actually. Non aneamic iron deficiency- ferritin is stored iron. Boost vit c too to help absorb iron.

That said, Tsh of 5, and t4 of 10 and I do not cope at all.

Have they tested antibodies?

Sadly I think they need Tsh over 10 according to nice guidelines to treat but I Think occasionally nice gps would offer a trial of t4, given your symptoms. could you ask for endo referral.

[Chancery in reply to haggisplant]

Ah, so ferritin is stored iron - thanks for improving my ignorance!

Your figures are remarkably like mine. We're thyroid souls sisters - although I'm not sure that's a good thing to be! No, I haven't had thyroid antibodies tested yet, but I will ask for that, just for further clarification.

I'm not sure I want treatment just yet; I'm on meds that I'm trying to phase down, if not out. But I might ask my doc if he would be amenable to trying a therapeutic trial at a later date. Just to break him into the idea. I think it's too early to see an endocrinologist yet as I have no real idea wha's going on, if anything. Once I have got myself up to speed with some potential scenarios I'll think of it then. At the moment it's just baby steps!

[Hidden in reply to Chancery]

Ask for the TPO antibody test AND the TgAB test. Sometimes the TPO can be negative, but the TgAB is positive. You aren't likely to get those tests nor the other, proper, thyroid tests like T3, Free T4, Free T3 or Reverse T3 with an NHS doctor, but you can get them yourself from various labs, it costs but at least you will be properly prepared instead of believeing doctors when they say your 'normal' when you obviously don't feel normal.

[haggisplant in reply to Hidden]

I've never had TPO abs but had the other ones. Massive hashi since age 20.

[Hidden in reply to haggisplant]

Hashi antibodies can be reduced by going Gluten free and the use of antibody lowering supplements like Selinium and iodine (take both as they work together, just iodine on its own harms Hashi patients).

[Chancery in reply to Hidden]

Thanks Hismum. I'll store that away for future reference. If I have to do my own treatment, that will be invaluable!

[Chancery in reply to haggisplant]

Yeah, I've been reading about Hashimoto's disease in my thyroid book. I think the antibody test is the most important test I can get right now. It says if you have the antibodies the thyroid problem isn't going away so you're best to treat it, mild or no.

[Chancery in reply to Hidden]

Thanks, I've been trying to track down the antibody tests without success, so that's really helpful. Now if I can just make some good strong links to low stomach acid and find out how they might test for that and/or treat it, I might make some progress here!

Yeah, I experienced first hand that they only do 2 tests on the NHS. I'm wondering how my doc is going to react to my results. I had to ask him three times for the tests I did get and when I, yet again, reminded him that he'd promised to do them he said "Why are we doing these again?" So I'll be curious to see if there's any acknowledgement from him that I was more on the ball than he was (he doesn't believe my B12/malabsorption/autoimmune theories, but they've turned out to be a damn sight more useful than the nothing he's done!) It'll take me all my strength not to say "See, I was right." Ah, we think these things but we don't say them....

[haggisplant in reply to Chancery]

I'd ask about iron tablets to see if it helps - nails can be funny with low iron too.

[Chancery in reply to haggisplant]

I've never worried about my iron as I used to take tablets as a teenager and they turned my poo black and constipated me! I was told this was because I had ample (which I probably did) and my body was just discarding it. But given that it's now forty years later it's maybe a bit of a lunatic assumption that I'm still alright! I think maybe some nutritional testing might be a good idea, if I can talk the doctor into it. Probably best to establish low stomach acid first, that way he'll be happier to test for malabsorption. That is, of course, assuming I HAVE low stomach acid!

[Hidden in reply to haggisplant]

May I ask what you are taking iron for, itching or RLS or anemia? If so has it helped what you are taking it for?

[haggisplant in reply to Hidden]

Gofish yes I have been taking basic iron tablets from gp x2 a day (about 400mg)

Gradually my itchy bones and muscle cramping lessened though I've also come off sertaline and altered thyroxine.

Two weeks ago I suddenly could sleep easily again; my ferritin level is now 87 from 55 in jan. Periods have been heavy too so ive done well! Interestingly Tsh and t4 are marginally higher (I'm noticing slight adverse effects) so adjusting slightly; from 150 to 125 x3 days, 150 x 4 days.

[Hidden in reply to haggisplant]

Healing is a blessing. Was it difficult to stop the sertraline?

[haggisplant in reply to Hidden]

The last 25 was very difficult but I was extremely weak at that point. I get terrible electric shocks. These got a lot worse during periods. But my blood was being peculiar (hb too high) so I think that made it worse.

[Chancery in reply to haggisplant]

Haggis, please, please forgive me if my memory lapse is really offensive here, but you don't have Trigeminal Neuralgia, do you? I am idiotically poor in memory, but in my defence I've met two or three people all in a row in the last couple of days with TN - an absolute miracle - and they all get jumbled in my already scrambled head. But you're not one of them, are you? I'm asking because of the "electric shock" thing in your comment above.

[haggisplant in reply to Chancery]

No I've no idea what that is!

Electric shicks from ad withdrawal though I seem to suffer more than most.

[haggisplant]

Yes I didn't bother about iron at all till it was clear it was causing issues.

My antibodies were tested 18 years ago on nhs when I was first diagnosed hypo - no idea why they trsted them, perhaps to establish why my Tsh was raised. I just remember the gp raising his eyebrows and saying "oh you've got antibodies. Hmm ok" but at the time I didn't know enough to ask. A few years later I did, and it was TgAb only.

I suppose that there's no point in testing for me now I'm on thyroxine. I have a feeling anribodies are tested through disgnosis? I'm sure there's nice guidelines about this? I wonder if the Tsh is between 4.5-10 whether presence of antibodies triggers treatment? I think I used to know the answer to this!

[haggisplant]

Yep all here. You should show gp and ask for trial. I don't know why my antibodies were done at same time but it was 18 years ago.

cks.nice.org.uk/hypothyroid...

[Chancery in reply to haggisplant]

Thanks for that, Haggis - I was looking for it! I'm going to have to read that four times, at least, very slowly, but I am cheered to see that they don't rule out treatment if you are under ten and showing symptoms. I definitely have symptoms, so I can at least whack him on the head with that, if nothing else, if I decide on treatment.

I feel as if I'm on a bit of a cleft stick here, to be honest. Not treat and see if it gets better on a 'cleaner' diet and off medication or treat and make it easier for myself to get better? They say that people who are under 10 don't show much improvement on treatment so it's not worthwhile doing, but I suspect few people on here would agree with that, so no point asking how true it is!

Tell me, when you went on treatment did you find you lost weight? I'm not asking for cosmetic reasons - I'm past that! - but my weight is beginning to impact on my health and I believe it's dangerous. I'm not hugely overweight, only 12 stone-odd, but it is still 3 stones too much and I can't shift it. I eat a very healthy diet, regulated up the wazoo and back, no cakes or pies for me, and chocolate never touches my lips, yet here I am, back at ground zero. (I starved myself for a year and a half and lost the weight but have slowly put it back on again, despite said eating well). I know thyroid only accounts for around 3 kilos, my book says, so God knows how mine's got here.

Anyway, do low thyroid sufferers generally find medication helps, or is that another dead end too?

[haggisplant]

I don't think I have any thyroid left; it's been destroyed. This happened in my 20s. Without thyroxine I'd be dead so treatment is a must.

In your case it's tricky - I think they worry about treating as they don't want to 'dampen' it down too much, for some reason they think thyroxine will kill off the thyroid. I'm not sure about all that other than there are instances when the thyroid recovers. Mine did early on (I came off the pill) but it deteriorated when I went back on the pill and then never recovered- bit like post partum thyroiditis.

A colleague has half a thyroid; it's now accommodating Her fully after 20 years on thyroxine so she's now off it, though probably will need it again.

But this is why finding antibodies should be key - read the nice Stuff carefully. Personally, and I think most people here would say a trial could help but it's down to your gp - possibly ask for endo referral to discuss further?

I think some people are monitored for several years. My chiro had the type affected by virus and stoically reckons she's controlled it via diet -they wanted her to have the thyroxine. I'm not 100% sure she's ok or doing right though.

I don't know about not showing improvement if you're borderline - I'd say you could.

I have hypermobility issues so I loose weight at the drop of a hat; including when underactive, so can't comment on weight. I think weight can be affected by lots of other things too.

Re reading your post - can you see this gp you spoke to and ask to do a trial? Constipation is one of my biggest indicators of low thyroid btw.

[Chancery in reply to haggisplant]

Thanks, Haggis. I would say lucky you, losing weight easily, but I seriously doubt you feel like that!

I think I've decided to wait and see, at least till I have my medications as low as my 'remission' will allow. Each time I drop a tablet, as I am doing now, I get withdrawal symptoms and a return of TN symptoms, in varying degrees. So far, they have settled again, but I get anxious every time it hits, as it did a day ago, so I never feel confident in my remission! But all being well, if I can get these meds down I will be able to tell much better a) what is thyroid and what is drugs and b) if any thyroid treatment I have is actually working.

And odd you should mention constipation. Last night we picked up one of those Indian meals for two from Asda's because they were clearing them for 50p. I never eat these because they are full of white flour, and because my oesophagitis can't stomach spices, but this one was fine.

Next day, my partner has the normal curry tummy - but me, nope. Nothing. Just the same stuck as-you-were. Not even strong spices can shift it! I'm also having some kind of malabsorption issue, which has a real name like steatorrhea, or some such, meaning you don't absorb fats. It produces grey floating poo (sorry, TMI!) I used to get this with gallstones, so I know what it looks like, and what I have now is like a less advanced version of it.

I find this very odd because my gut is now subject to bile dumping, as I have no gallbladder, so how in hell am I getting fat malabsorption? I haven't mentioned it to my doc as yet, because I wanted to be sure it's happening (it is; I humiliated myself and asked my partner to check!) and see if I could figure how it fits in, but so far I'm drawing a blank. I shall be forced to confess it soon, because it obviously is part of the puzzle, but God knows what.

[haggisplant]

I personally think it would be wise to discuss everything with your gp - do your meds affect thyroid?

A lot of processed in the body rely on thyroid hormones.

Best wishes

[Chancery in reply to haggisplant]

Yes, Haggis, in that, according to what I've been able to find, they "can produce dysfunctional thyroid test results" so this could all be a storm in a teacup, except I suspect it isn't. I fit the low thyroid pattern too well - damn it. But nevertheless, that's why I want to wait and see and see if I can get off the drugs.

Synthetic thyroid medication is not something to be taken lightly. That's why I also want to test for thyroid antibodies. More information is the name of the game. I've learned the hard way not to accept doctors quick in and out approach - always get more tests!

[Barb1949]

Chancery, I suspect you may have tried this but I have found that 1000mg chewable Vitamin C before I go to bed has seemingly cured my constipation of many years standing. I was advised to take this when I was prescribed Ferrous Fumarate. I was amazed at the result.

Barb

[Chancery in reply to Barb1949]

Hi Barb, no I didn't know that - you've sprung a new one on me. I confess I'm a little worried about the acidic aspects of Vit C on my oesophagitis, but I think it's worth a try. The tablets could always be used for colds if I can't take them!

Actually, the curry dinner I mentioned above to Haggis has sent me off on a new journey of discovery. I've noticed that an oily meal seems to have more laxative effects, especially if I keep them coming. By coincidence I ate a beef dish the night after and it had been cooked with more oil than we would normally use and lo and behold, better, only BETTER, mind you, bowel movements.

Ever since I had gallbladder disease I've avoided fat in my diet, but I'm wondering now if I've done myself a disservice. On the other hand, fat still doesn't sit easy in there. There is definitely some issue around fat/meat (I won't go into TMI territory again - but let's say I get hot winds from the tropics when I eat meat!) and malabsorption - I just can't see a pattern yet.

But I'm off to try the Vit C cure. Thanks for that!

[Barb1949 in reply to Chancery]

I also have oesophagitis and the cheweable tabs have had no effect on this.

[Barb1949 in reply to Barb1949]

I had my gallbladder removed 33 yrs ago and kept away from fats for many years. I now regularly eat butter, and most animal fats, in reasonable amounts.

For the last couple of weeks I have been taking 30ml extra virgin olive oil. I use it as a dip with ciabatta or sourdough bread. I assume this could also have an effect but don't know if it is doing anything yet.

[Chancery in reply to Barb1949]

Good to know about the oesophagitis, Barb, thanks! Do you reckon it might be related to low stomach acid from the thyroid condition? Did you notice any difference when you went onto thyroid medication, did it improve your digestion problems any?

[Barb1949 in reply to Chancery]

Unfortunately not, in my case. I was diagnosed, after rafts of tests including an endoscopy, with too much stomach acid. I have had severe acid reflux for many years which has damaged not only the oesophagus but my lungs and vocal chords as well. Since joining this forum I learned that you produce less acid as you get older so I decided to come off the PPI's. I did this over three months which I am told is too quickly but hasn't done me any harm. I have had only a couple of very mild attacks of reflux since for which I took gaviscon. My stomach feels so much better now too.

The levo made no difference to my stomach as far as I can tell.

I do think the reflux is made worse by the sliding hiatus hernia, but at the time I didn't know anything about these things and in those days I hadn't started questioning everything doctors told me. (I give them earache now ).

[Chancery in reply to Barb1949]

Ah, so you have too MUCH acid. I'm sorry, I can't remember if you've said elsewhere - do you suffer from low thyroid or high? But great that you've been able to make ageing work in your favour. Not often that happens!

[Barb1949 in reply to Chancery]

Well I don't appear to have too much acid any more, thank goodness. I am myxoedema, severely hypo! But I wasn't diagnosed until 25 yrs ago and following getting all my medical records I have discovered there was a question mark about possible thyroid disease on my record at six months old. This was when I was tested for coeliac which was negative. My sister in law tells me they test all babies for thyroid now. She has just retired from running a scibu unit.

It is rather good when getting older has favourable consequences, although I have told all my family that I am only just middle aged (65 yrs) lol.

Barb

[Chancery in reply to Barb1949]

Of course, sorry, I remember you mentioning myxoedema. My brain's just getting round to picking up some of these terms, so they stick really badly!

I am sure I read the thread talking about you getting your medical records and finding out you had been diagnosed at 6mths. That's amazing. But I've got to ask you, how did you go about getting your records? - and again apologise to you if I've already asked you that. I have a horror that I have. I'm in withdrawal at the moment, coming off my anti-convulsants, and for some bizarre reason it makes my cognitive skills even worse, with a memory like a spider's. You'd think less tablets would mean an improvement - but not me.

I would love to see my records, and would be happy to pay for them, but I've lived all over the place and changed my name when I was in my twenties, so really not sure how much they could pick up. I know they are supposed to follow you, but do they, in practice? You can tell I have no faith in the NHS when it comes to communication!

As it's the early ones I'd like to see, I don't really want to fork out £50(?) for my records for seven years!

[Barb1949 in reply to Chancery]

Chancery,

Ask your practice manager at the surgery to get you your complete medical records, including all letters to and from consultants, all test results from hospital(s) and all your complete blood test results FROM BIRTH to date. You will need to put this in a letter just addressed to the practice manager if you don't know their name; and make sure you seal it. I actually also marked mine private so it wasn't opened by anyone else. It took three weeks for mine to be ready but some of them had been water damaged following a warehouse fire (where the old ones were being stored) and they had to get them deciphered and written out. They did enclose the damaged pages too.

It doesn't matter if you have moved about the UK or changed your name (I have been married 3 times) Your records go by your NHS number. As you say it will cost you £50, but in my case it has been well worth it.

I hope this is enough information for you and good luck.

[Chancery in reply to Barb1949]

Again, thanks a million, Barb. I am sending you a virtual box of chocolates (be consoled they at least don't make you fat)! I am cutting and pasting your reply into a file on my computer right now so I don't lose the damn thing. Ah, I am wise to the ways of TN....

[Barb1949 in reply to Chancery]

hehehehe, I love chocs! I have deprived myself of them for many years thinking they would be making me fatter. Since joining this forum and discovering I needed to eat MORE calories and fat I have started to eat some if I have a fancy for it. Funnily enough, since I stopped dieting I have not put on any weight, although I am still hugely overweight. Hopefully optimum medication will help that problem.

[Chancery in reply to Barb1949]

How weird, I've just started looking into a high fat diet, which I think I mentioned to you. Great minds think alike! (When mine's can think at all!)