I don't understand my test!

[Madeline]

Last week, and it’s in Monday’s shopping delivery - I love asparagus. Not the delicately scented after effects though. Stilton, you reminded me, need to add that to delivery.

 

[AdeV]

Last week, and it’s in Monday’s shopping delivery - I love asparagus. Not the delicately scented after effects though. Stilton, you reminded me, need to add that to delivery.

You can add loads of garlic for extra piquancy

Anyway - I feel I've dragged this thread a bit too far off topic 🙂 Time to start a new one in recipes maybe...

 

[Madeline]

You can add loads of garlic for extra piquancy

I see what you did there

 

[Andy HB]

Can I just question using one tablespoon of sugar in a 400g loaf? (Sorry for not using the quote system to point to the relevant post in this thread, but I am using my phone and am not too clever with it!).

Anyway, I make 400g seeded wholegrain loaves in my breadmaker and only use 1 teaspoon of sugar. If anything, they still rise too much!

 

[AdeV]

Can I just question using one tablespoon of sugar in a 400g loaf?

I'm pretty sure it's a typo & should read teaspoon...

 

[Mary.M]

sugar in wholemeal bread recipe … not a typo on this occasion … recipe from the book that came with my Panasonic bread maker about 100 years ago, maybe times have changed?

100% wholemeal loaf: 3/4 tsp yeats, (or even yeast, that really was a type0, whoops, there's another one), 400g flour, 1tbsp sugar, 15g butter (I use olive or rapeseed oil), 1 tsp salt, 300ml water

this also rises too much and I cut the yeast to 1/2 tsp, I will try cutting the sugar instead, thanks for that!

anyway, using info provided here elsewhere it looks like I'm whacking up my blood glucose by about 6 points with 'elevenses' at 10 a.m. so perhaps everyone here is right and 7.2 is not a bad reading an hour later

the suspense will end next week! BTW I love broccoli, I could eat it every day, steamed in the microwave for one minute and best with anything tomato-based like spag bol, ratatouille but will have it with just about anything

and the dog likes the stalks, I get funny looks in supermarkets when I pick up the bits of stalk other people have broken off (so they don't pay for the extra weight) and have been known to buy a bag of just stalks, as far as I know the dog isn't diabetic either so perhaps loving broccoli is a diagnostic sign of not having pre-diabetes

 

[AndBreathe]

@Mary.M - if your thyroid has been wonky for a whole, it can impact your blood sugars your thyroid is a very important part of metabolism.

Good luck next week.

 

[Mary.M]

thank you, 6 years with thyroid trouble, took a long time to get the hang of balancing anti-thyroid drugs against thyroid-stimulating antibodies

all the consultants are interested in is hoicking me into surgery to remove my thyroid but as it's a fault with my immune system, not my blameless thyroid, I go with advice from a wonderful American support forum run by a retired lab scientist to keep my levels in range

with thyroid the tests are more simple than diabetes, you are either (a) below the range and therefore hypothyroid, (b) within range and therefore considered well or (c) above the range and therefore hyperthyroid

I've been up & down like a yoyo until I started following the American advice and now within a hair's breadth of remission, if it weren't for the trial drug withdrawal in January because of the rash, I wouldn't have had this latest blip and perhaps that's impacted on my glucose level, no idea as it's never been tested before

back on the anti-thyroid drug for 6 weeks now and I can tell I'm right in the 'sweet spot' within range, just need to keep it that way and really hope next week's tests show both thyroid and glucose ok so thank you for your good wishes

I've always thought if I had my thyroid out and my over-enthusiastic immune system was deprived of its amusement in kicking 6 bells of my thyroid, where it might go looking to cause mayhem elsewhere, there are much worse auto-immune diseases than Graves, one of my friends died of MN and another is dying from PSP, I am pretty lucky really

just had my appallingly carborific 'tenses' and out to burn off some carbs now, wishing you all a lovely peaceful day

 

[AndBreathe]

thank you, 6 years with thyroid trouble, took a long time to get the hang of balancing anti-thyroid drugs against thyroid-stimulating antibodies

all the consultants are interested in is hoicking me into surgery to remove my thyroid but as it's a fault with my immune system, not my blameless thyroid, I go with advice from a wonderful American support forum run by a retired lab scientist to keep my levels in range

with thyroid the tests are more simple than diabetes, you are either (a) below the range and therefore hypothyroid, (b) within range and therefore considered well or (c) above the range and therefore hyperthyroid

I've been up & down like a yoyo until I started following the American advice and now within a hair's breadth of remission, if it weren't for the trial drug withdrawal in January because of the rash, I wouldn't have had this latest blip and perhaps that's impacted on my glucose level, no idea as it's never been tested before

back on the anti-thyroid drug for 6 weeks now and I can tell I'm right in the 'sweet spot' within range, just need to keep it that way and really hope next week's tests show both thyroid and glucose ok so thank you for your good wishes

I've always thought if I had my thyroid out and my over-enthusiastic immune system was deprived of its amusement in kicking 6 bells of my thyroid, where it might go looking to cause mayhem elsewhere, there are much worse auto-immune diseases than Graves, one of my friends died of MN and another is dying from PSP, I am pretty lucky really

just had my appallingly carborific 'tenses' and out to burn off some carbs now, wishing you all a lovely peaceful day

With respect, Mary, the thyroid isn't always simple. Being in range and therefore well is all very well, provided if one is in range, one is indeed well.

When ones TSH is in range, T4 low, and not budging, despite taking T4, and T3 just below range, it's all very well to be considered well, unless you are the person wrapped around those numbers.

Of course, I am somewhat envious of your sweet spot, and coming across as very grumpy. I'm not grumpy, merely frustrated. I look forward to finding my own thyroid sweet spot, even if it feels like I'm likely another 3 years away, and a few more battles away from doing that.

 

[TheClockworkDodo]

I have an overenthusiastic immune system too, Mary - mine is multitasking with simultaneous attacks on my pancreas, thyroid, and adrenal glands, but my thryoid is only borderline low and my adrenal gland seems to be coping with the antibodies (much to the surprise of all the endos who look at my results and send me off for cortisol tests, only to be baffled when they come back normal). As you have an autoimmune disease already, if your HbA1c result does come back high, it would be sensible to ask them to do a GAD antibody test for type 1 diabetes rather than letting them assume it's type 2. But I hope the HbA1c will be normal!

@AndBreathe - as your T3 is low as well as your T4, have you tried taking Liothyronine or dessicated thryoid instead of Levothyroxine, or will they not prescribe them for you?

I am the other way round from you - my TSH is consistently elevated, but because my T4 results are always borderline normal, no-one quite knows what to do about me - every endo or GP I speak to tells me something different. One GP finally persuaded me to try Levothyroxine, and I wish she hadn't, because a) I had an adverse reaction to it and had to stop taking it, and b) once I stopped taking it I felt worse than I'd done before I started. Then I tried Liothryonine - no adverse reaction, thankfully, but I wasn't convinced that did anything for me so (a different) GP stopped it - and now I feel worse again. Over the years various GPs have asked various labs to test my T3 and none of them did 😡 - finally got it tested while I was taking Liothryonine, only for the results to come back with a note saying that the results of a T3 test are unreliable for anyone on Liothryonine 🙄 - so I have no idea what effect it was having, if any. I am now back taking it again, but it has been removed from my prescription repeat list (I'm using up my last lot), so will have to see another GP or endo soon to see what they want me to try next ...

 

[Madeline]

Duff thyroid here too, mine is hypo rather than hyper, and I take 100mg Levothyroxine a day.

 

[Mary.M]

With respect, Mary, the thyroid isn't always simple. Being in range and therefore well is all very well, provided if one is in range, one is indeed well.

When ones TSH is in range, T4 low, and not budging, despite taking T4, and T3 just below range, it's all very well to be considered well, unless you are the person wrapped around those numbers.

Of course, I am somewhat envious of your sweet spot, and coming across as very grumpy. I'm not grumpy, merely frustrated. I look forward to finding my own thyroid sweet spot, even if it feels like I'm likely another 3 years away, and a few more battles away from doing that.

Hi there, many thanks for the reply to my thyroid message. I didn't mean to imply thyroid conditions are simple, nothing could be further than the truth, I meant the medical protocol for interpreting thyroid tests is black & white, you're either in or out, and they will tell you if you're in that you're well, regardless of how you feel. I didn't want to blether too much about thyroid on a forum dedicated to a different disorder but as you clearly have personal experience, I've been told I'm fine right down on the bottom borderline of T4, told to keep taking the tablets, and ended up so brain fogged with hypo I drove my car into a bollard, put on 2 stone and developed eye involvement that needed lid surgery so I could close my eye. When I've been happily in range and feeling ok I've been told to double my drug dose to try to stimulate TSH, then stop completely, and ended up raging hyper again and told I had no option other than surgical thyroidectomy, which I declined, and got sacked by the consultant as 'choosing to self medicate' when in fact I was following my GP's advice to 'go by how you feel'.

The reason I won't consider thyroidectomy is I will then be at the mercy of pharmaceutical thyroxine and if I am given enough to get me anywhere into T4 range, even if it's right down low and I feel like rubbish, they will say I am well and refuse to prescribe any more.

With the help of my wonderful GP, advice from Elaine Moore's forum and trial & error I discovered my 'sweet spot' right at the top of the range and can only achieve stability by cutting pills into tiny bits because the smallest pill causes too high a fall in T4. All against current medical protocol and in sympathy with your difficulties, would suggest you look up Elaine Moore and post a question on her forum. Best regards, Mary

 

[Mary.M]

I have an overenthusiastic immune system too, Mary - mine is multitasking with simultaneous attacks on my pancreas, thyroid, and adrenal glands, but my thryoid is only borderline low and my adrenal gland seems to be coping with the antibodies (much to the surprise of all the endos who look at my results and send me off for cortisol tests, only to be baffled when they come back normal). As you have an autoimmune disease already, if your HbA1c result does come back high, it would be sensible to ask them to do a GAD antibody test for type 1 diabetes rather than letting them assume it's type 2. But I hope the HbA1c will be normal!

@AndBreathe - as your T3 is low as well as your T4, have you tried taking Liothyronine or dessicated thryoid instead of Levothyroxine, or will they not prescribe them for you?

I am the other way round from you - my TSH is consistently elevated, but because my T4 results are always borderline normal, no-one quite knows what to do about me - every endo or GP I speak to tells me something different. One GP finally persuaded me to try Levothyroxine, and I wish she hadn't, because a) I had an adverse reaction to it and had to stop taking it, and b) once I stopped taking it I felt worse than I'd done before I started. Then I tried Liothryonine - no adverse reaction, thankfully, but I wasn't convinced that did anything for me so (a different) GP stopped it - and now I feel worse again. Over the years various GPs have asked various labs to test my T3 and none of them did 😡 - finally got it tested while I was taking Liothryonine, only for the results to come back with a note saying that the results of a T3 test are unreliable for anyone on Liothryonine 🙄 - so I have no idea what effect it was having, if any. I am now back taking it again, but it has been removed from my prescription repeat list (I'm using up my last lot), so will have to see another GP or endo soon to see what they want me to try next ...

Juliet: I have read that Liothyronine is not being prescribed because of the expense, Levo is much cheaper and prescribers will wriggle around to avoid the cost if they can. Google 'Liothyronine too expensive' and you will see the reports, I think the NHS may have reconsidered but there is still resistance to prescribing. I know what you mean about conflicting advice, and reluctance to test T3, we can do without things being made harder for us. Best regards, Mary

 

[TheClockworkDodo]

Thanks, Mary - yes, I saw something on the Thyroid UK site about doctors not prescribing Liothyronine, or only prescribing it privately. I'm really hoping they might take my adverse reaction to Levothryoxine into consideration when they work out what I should do next, because I'd like the opportunity to try a higher dose of Liothryonine before I give up on that altogether. I think dessicated thryoid is my other option - and may well be the best one for me - but I know that's very expensive so they're unlikely to let me try it at all, given my borderline results.

 

[AndBreathe]

I have an overenthusiastic immune system too, Mary - mine is multitasking with simultaneous attacks on my pancreas, thyroid, and adrenal glands, but my thryoid is only borderline low and my adrenal gland seems to be coping with the antibodies (much to the surprise of all the endos who look at my results and send me off for cortisol tests, only to be baffled when they come back normal). As you have an autoimmune disease already, if your HbA1c result does come back high, it would be sensible to ask them to do a GAD antibody test for type 1 diabetes rather than letting them assume it's type 2. But I hope the HbA1c will be normal!

@AndBreathe - as your T3 is low as well as your T4, have you tried taking Liothyronine or dessicated thryoid instead of Levothyroxine, or will they not prescribe them for you?

I am the other way round from you - my TSH is consistently elevated, but because my T4 results are always borderline normal, no-one quite knows what to do about me - every endo or GP I speak to tells me something different. One GP finally persuaded me to try Levothyroxine, and I wish she hadn't, because a) I had an adverse reaction to it and had to stop taking it, and b) once I stopped taking it I felt worse than I'd done before I started. Then I tried Liothryonine - no adverse reaction, thankfully, but I wasn't convinced that did anything for me so (a different) GP stopped it - and now I feel worse again. Over the years various GPs have asked various labs to test my T3 and none of them did 😡 - finally got it tested while I was taking Liothryonine, only for the results to come back with a note saying that the results of a T3 test are unreliable for anyone on Liothryonine 🙄 - so I have no idea what effect it was having, if any. I am now back taking it again, but it has been removed from my prescription repeat list (I'm using up my last lot), so will have to see another GP or endo soon to see what they want me to try next ...

Thanks for your thoughts. I'm probably ahead of you there.

I've only just managed to wangle 6-weekly titrations, until either my symptoms go away or my tests are euthyroid. Thus far, I'm failing on the first element, as despite titrations the TSH is increasing and T4 remains rock solid, not budging an inch. T3? Getting that regularly tested would be helpful, but the lab does as they see fit it seems, if the TSH remains under 10. Yes, ............. 10.

As I'm not my tests don't return euthyroid levels, I fail there too.

There have been brief discussions about T3, although there is zero interest in discussing it (sadly, my GP's thyroid knowledge is limited to say the least, and the Endo is mega cautious it seems).

I'm actually in SE Asia at the moment, and with the 38c heat, I'm not cold so often. Yes, I did say so often, but as that seems to be fairly typical (plus of course my Vit D will be well naturally topped up), I'm have the papers for a test as soon as I am home, but to be honest, after 2 months of extraordinary living, whatever it returns, I'll see as a special period, needing to be backed up by subsequent tests. I have however got a nice generous pot of NDT in my luggage, all ready to come home, should I need it. It's modestly priced here, and it made sense to hedge my bets to be honest.

If necessary, I can come back here and acquire a decent supply Liothyronine, as it would be for personal use.

This'll go on and on, I reckon. I love a challenge, but I'm a bit bored of this one!

 

[TheClockworkDodo]

You are ahead of me, @AndBreathe - I don't know what some of the words in your post mean! I've read very little about hypothryoidism, partly because it's only recently anyone's thought it might be worth trying me on some meds to see what happens, and partly because I'm very, very squeamish and phobic about medical stuff so I avoid websites which might have lists of symptoms or side effects or anything like that. I am very careful what I read on here.

My TSH is usually 8ish or 9ish - highest one was 11.4 but the lab didn't test my T3 then, presumably because the T4 test done at the same time was 12.2 and it didn't occur to them that my body might not be converting T4 to T3, even though that's apparently quite common in people with ME. My lowest T4 result was 10. Some people I see say that's right at the bottom of T4 range so I should be carefully monitored; others say the range starts at 5.6 so I must be perfectly fine. Yet others say I should be on thyroid meds because they might help with the tiredness. To which I have traditionally responded "what tiredness?" and explained to them that they are making incorrect assumptions based on my having a diagnosis of ME (it doesn't cause tiredness, it causes post-exertional neuro-immune exhaustion).

Since trying the Levothyroxine though, I've started having a few hypothyroid symptoms, including tiredness - I really wish I'd never been persuaded to touch the stuff! Interesting that you can get NDT and Liothyronine in other countries, presumably as over the counter meds? - NDT in particular seems to be regarded as something akin to gold dust here.

 

[AndBreathe]

You are ahead of me, @AndBreathe - I don't know what some of the words in your post mean! I've read very little about hypothryoidism, partly because it's only recently anyone's thought it might be worth trying me on some meds to see what happens, and partly because I'm very, very squeamish and phobic about medical stuff so I avoid websites which might have lists of symptoms or side effects or anything like that. I am very careful what I read on here.

My TSH is usually 8ish or 9ish - highest one was 11.4 but the lab didn't test my T3 then, presumably because the T4 test done at the same time was 12.2 and it didn't occur to them that my body might not be converting T4 to T3, even though that's apparently quite common in people with ME. My lowest T4 result was 10. Some people I see say that's right at the bottom of T4 range so I should be carefully monitored; others say the range starts at 5.6 so I must be perfectly fine. Yet others say I should be on thyroid meds because they might help with the tiredness. To which I have traditionally responded "what tiredness?" and explained to them that they are making incorrect assumptions based on my having a diagnosis of ME (it doesn't cause tiredness, it causes post-exertional neuro-immune exhaustion).

Since trying the Levothyroxine though, I've started having a few hypothyroid symptoms, including tiredness - I really wish I'd never been persuaded to touch the stuff! Interesting that you can get NDT and Liothyronine in other countries, presumably as over the counter meds? - NDT in particular seems to be regarded as something akin to gold dust here.

TheClockworkDodo, obviously you have to manage your hrealth the way you see fit, but thyroid conditions are another of those medical things where our own input can make a real difference to the direction of travel.

In terms of a health, naturally functioning thyroid, the TSH would usually be around 1, T4 well up into the range and T3 similarly so. The lab assay ranges can vary from lab to lab, but to be honest, that's sort of because the labs have "used their control solution" on their meter. OK, obviously, they haven't but that's usually why ranges can vary a bit - differences in the readings from a controlled test.

Vis-a- vis your having a few hypothyroid symptoms now you didn't have before, again that's not uncommon, when starting or adjusting meds. When I started on Levothyroxine, I just felt a bit better. I didn't feel great, but I felt a bit better than I had before (my major symptom is an intolerance to the cold). I was so excited, then about 3-4 weeks, that feeling a bit better feeling started to go away, and I went back to where I started. Each time my meds have gone up this is happened.

It's like our thyroid gets a bit of help, and relaxes (so we feel better), the it protests because it needs more help that being given. That feeling not so great, or worse is considered a sign the dose isn't correct, so maybe you could do with a tweak?

Where I am right now, Levothyroxine, Liothyronine and NDT are available over the counter (as is insulin, but obviously that's whoooooooooool different ball game!), although, most pharmacies only routinely stock Levothyroxine. The other meds are more like to to be available nearer bigger hospital/clinics or universities, or online.

Many people in UK buy their T3 and NDT online, with a private prescription usually, unless somewhere like here where no script is required.

I know you say you avoid medical websites and the like, but if you are looking for a site, like this one, with knowledgeable, experienced people on it to help explain anything, then I suggest Health Unlocked's Thyroid UK are. It is excellent.

https://healthunlocked.com/thyroiduk

I'd urge you to stick with the thyroid meds for a while and have a discussion with your Doc about what's happening with you. Our thyroid is so important to our metabolic health.

 

[Northerner]

This discussion about the thyroid is interesting for me. @Mary.M - you may think that's easier to understand than diabetes, but I'm in a totally different place! With diabetes I regulate my blood sugar levels using insulin - too high = more insulin, too low = more glucose. Simple. However, just be for Christmas last year I was diagnosed with 'sub clinical' hypothyroidisdm. I opted to go on medication, following the advice and recommendations of the good people here and had a follow-up telephone appointment after 3 months on 25mg levothyroxine. I find it hard to say whether the medication relieved any symptoms because many of those symptoms are things I experience in the winter months anyway. The latest test showed that I was 'the upper end of normal', with a level of 4.0. I was told that the upper level of 'normal' was 4.2. The doctor said that they prefer people to have a lower reading, around 2, and I was told that, for now, I should just continue and be re-tested in 3 months. Now, what I am unsure about is should I need a higher dose of levothyroxine to bring that number down? I did try and read up about the other measurements you speak about, like T3 and T4, but couldn't understand the relationship! Far more complicated than diabetes! 😱 🙂

 

[AndBreathe]

This discussion about the thyroid is interesting for me. @Mary.M - you may think that's easier to understand than diabetes, but I'm in a totally different place! With diabetes I regulate my blood sugar levels using insulin - too high = more insulin, too low = more glucose. Simple. However, just be for Christmas last year I was diagnosed with 'sub clinical' hypothyroidisdm. I opted to go on medication, following the advice and recommendations of the good people here and had a follow-up telephone appointment after 3 months on 25mg levothyroxine. I find it hard to say whether the medication relieved any symptoms because many of those symptoms are things I experience in the winter months anyway. The latest test showed that I was 'the upper end of normal', with a level of 4.0. I was told that the upper level of 'normal' was 4.2. The doctor said that they prefer people to have a lower reading, around 2, and I was told that, for now, I should just continue and be re-tested in 3 months. Now, what I am unsure about is should I need a higher dose of levothyroxine to bring that number down? I did try and read up about the other measurements you speak about, like T3 and T4, but couldn't understand the relationship! Far more complicated than diabetes! 😱 🙂

Northerner - I was started on 25mcgr of Levothyroxine too, by my ultra cautions GP, but it did touch the sides. If your TSH has inceased (as opposed to decreased), you are almost certainly under-medicated, in my opinion. I would want an increase in the medication now, not in several more months, but I'm impatient.

It takes a while to sort out thyroids, as I am learning to my frustration, and sadly many GPs just focus on the TSH level. A bit like diabetes, they know about thyroid, but not too often at an in-depth level, and further frustrating is that most of our Endos are diabetes specialists, as opposed to being keen on thyroid stuff.

When you were investigated, did they test for both lots of anti-bodies too, and having at least one auto-immune condition, you're more likely to pick up more along the way.

Honestly, the health unlocked forum I suggested earlier in this thread is fabulous and I owe them such a lot in terms of my knowledge and journey to date.

Good luck with it all.

 

[AndBreathe]

@TheClockworkDodo - One thing I meant to add earlier, but forgot to mention is if you feel a bit off on your current meds, it could be worthwhile asking for a different brand next you are in the pharmacy.

I didn't get along too well with the Teva brand. It made me feel quite queasy. On others, Wockart and Mercury, I'm absolutely fine.

Lots of folks have issues with Teva allegedly, but other brands can also have issues. It's more than likely the fillers than any thing else.