Total Confusion Over Thyroid Problems/Thyroxine! - Thyroid UK

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Total Confusion Over Thyroid Problems/Thyroxine!

BlueBlackCatLady profile image

Please can someone help me out of this confusion! I have had Fibromyalgia for nearly 40 years now (only properly diagnosed a few years ago) but have been convinced for many years that I have a thyroid problem (especially as my late father and late aunt had such). However, my symptoms are neither totally hyper-thyroid nor hypo - but instead a mixture of both. Having now purchased (on Amazon Kindle) a book called 'Impaired Sensitivity To Thyroid Hormone' by Hugh A Hamilton (who I believe is a member of this group), I can totally see the Fibro connection and it fits me and my extremely complicated and long-duration medical history completely! I therefore decided it was time to discuss things with an Endocrinologist and duly booked a private appointment with one, who from research, I believed was open to the ideas in this book. However, blood tests reveal 'normal' (as always!) but, on a recent follow-up visit, the Consultant agreed it was worth trying Levothyroxine. To be honest, I rather felt he did this to 'shut me up' and I was not impressed with the quick way he dismissed me to put me on what is, potentially, a drug not to be messed with. However, I've had to delay starting this medication due to recent flu. But this has given me valuable thinking time about the whole thing and I'm not happy about the thoughts of this drug. I have many symptoms of an overactive (hyper) thyroid, as well as some of an underactive (hypo) thyroid and my thoughts are that I could simply overdose on the thyroxine and cause immense problems. I am on HRT (patches), as well as Propranalol (betablockers) and Tramadol (for fibro pain) as I have been for years and these don't seem to mix well with Thyroxine - according to what I've read. I am due to see this specialist again in a few weeks and, this week, a gynaecologist who has been dealing with me for about 6 months due to problems with my HRT. I just don't know which way to turn! Please can anyone help - I be grateful for any advice!!

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SeasideSusie profile image
SeasideSusieRemembering

BlueBlackCatLady

Do you have any thyroid test results to share please? It helps to give a picture of what's happening, why the endo started you on Levo, etc.

For a full picture we need to see

TSH

FT4

FT3

Thyroid antibodies

and because optimal nutrient levels are needed, and low levels and deficiencies bring their own symptoms, some of which overlap with symptoms of hypothyroidism, the follow are also important

Vit D

B12

Folate

Ferritin

If you can post your results, with their reference ranges and units of measurement for Vit D and B12, then members will be able to comment.

By the way, levothyroxine is not a "drug", it is a hormone replacement, replacing what the body can't make enough of itself :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SeasideSusie

I rather suspected I'd be asked this! If you can believe it, I'm still waiting to actually see my results - I was only told verbally. I have asked my consultant's secretary for a copy of them but have not yet received them and I'm in the process of chasing her over it. All I can tell you is that they were 'normal' (with negative antibodies etc.) but of course I was told so quickly that I could not possibly have taken it all in - though my husband seems to think my THS levels (which I'm confused on any way!) were 4.5, which the consultant did say was at the 'upper end'. Despite that, he said that, under normal circumstances, he would not have suspected any problems. He said it was only down to my medical history and what I'd explained, plus my family medical history etc., that made him think it might be worth 'taking a chance' in giving Levothyroxine to see if it made any difference. According to Hugh's book (as mentioned by me in my previous posting) even the tinnitus, vertigo and most other fibromyalgia symptoms (of which I have 63 out of 65 and which I have had for nearly 40 years) can be as a result of problematical thyroid levels - but not necessarily a *lack* of thyroxine it seems! So why give me yet more thyroxine?!

I had post-natal psychosis after the births of both my sons, thirty two and twenty two years ago respectively now - the first time meaning I was hospitalised (psychiatric hospital)

for over a year. I have only recently read that this rare condition can sometimes be brought on my too much thyroxine being released (along with other hormones) at the time of birth. Yet more 'pieces of the jigsaw' fitting!

Once I get my results, I will post them online. A million thanks for your response and interest! :-)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SeasideSusie

Please can you now look at my most recent response to Marz - I tried to copy and paste the results I'm showing directly to yourself but the format gets messed up and makes it almost impossible to read …

Hopefully you can now see my blood test results this way and, again, I would be so grateful to you for your opinion. Thanks! :-)

Marz profile image
Marz

Hi and Welcome !

It would be helpful if you could post your latest results with ranges. Perhaps you have Hashimotos hence the feelings of both Hyper and Hypo. Levo/T4 is not a drug - but a replacement hormone your body no longer produces in adequate amounts for you to feel well. Post your results if possible and members will comment. Usually Fibro is accompanied by a Low FT3 and low in range B12 - Folate - Ferritin and VitD ...

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

I rather suspected I'd be asked this! If you can believe it, I'm still waiting to actually see my results - I was only told verbally. I have asked my consultant's secretary for a copy of them but have not yet received them and I'm in the process of chasing her over it. All I can tell you is that they were 'normal' (with negative antibodies etc.) but of course I was told so quickly that I could not possibly have taken it all in - though my husband seems to think my THS levels (which I'm confused on any way!) were 4.5, which the consultant did say was at the 'upper end'. Despite that, he said that, under normal circumstances, he would not have suspected any problems. He said it was only down to my medical history and what I'd explained, plus my family medical history etc., that made him think it might be worth 'taking a chance' in giving Levothyroxine to see if it made any difference. According to Hugh's book (as mentioned by me in my previous posting) even the tinnitus, vertigo and most other fibromyalgia symptoms (of which I have 63 out of 65 and which I have had for nearly 40 years) can be as a result of problematical thyroid levels - but not necessarily a *lack* of thyroxine it seems! So why give me yet more thyroxine?!

I had post-natal psychosis after the births of both my sons, thirty two and twenty two years ago respectively now - the first time meaning I was hospitalised (psychiatric hospital)

for over a year. I have only recently read that this rare condition can sometimes be brought on my too much thyroxine being released (along with other hormones) at the time of birth. Yet more 'pieces of the jigsaw' fitting!

Once I get my results, I will post them online. A million thanks for your response and interest! :-)

Marz profile image
Marz in reply to Marz

If your TSH is 4.5 then you are Hypo - healthy folk have a TSH of around 2.5 or less.

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

Really?!! I wonder why the specialist only thought it was the 'upper end' then?! Obviously the best way forward with this now I guess is to start taking the Levothyroxine and also post my results here just as soon as I get them …

I think the real problem lies in the complexity of thyroid issues - even consultants seem to disagree it seems, and there is certainly a lot of conflicting information out there … it's like a huge maze at times!!

Thanks again for your response/help :-)

Marz profile image
Marz in reply to BlueBlackCatLady

It is the upper end as the TSH range is something like 0.5 - 5.5 - but of course labs do vary as do their ranges ...

Yes the Thyroid is complex - so it is best to decide who to follow. I have been on this forum for over 7 years and many other members longer. If you follow this Forum then you will soon see a pattern of understanding emerging. It's all about reading and to realise that Doctor does not always know best or have the patients interests at heart. Training at Med School has been tainted by Big Pharma and time spent on the Endocrine system is minimal. The link below takes you to the main website of this Forum where you can read and read for a balanced understanding ...

thyroiduk.org

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

Thank you for this. I am aware of most doctors thoughts for/with the dominance/influence of the large pharmaceutical companies from my experience with Fibromyalgia/general health. It is always difficult to find one who 'thinks outside of the box'. I have personally spent time training myself over the years in a number of alternative therapies/ideas because, as a rule, they have at least got better ethics and a wholistic view of the body. However, I also realise there is a time and place for conventional medicine (which, in fairness, has helped me to quite a degree with different things.) My problem right now is trying to sort the 'wheat from the chaff' as it were, hence looking at this forum where the real people with experience - i.e. patients, not doctors who only know things hypothetically, - are giving 'real' answers! Thanks again :D

Marz profile image
Marz in reply to BlueBlackCatLady

You can click onto my username above and read my Bio - only takes a couple of minutes 😊

greygoose profile image
greygoose

Hi CatLady, welcome to the forum.

I think we have a few misconceptions, here. Firstly, there is no clean-cut line between hypo and hyper symptoms. An awful lot of them cross over. Plus, if you have Autoimmune Thyroiditis - Hashi's - it is possible to have both hypo and hyper symptoms at the same time. So, that's why we need to do blood tests. Do you have copies of your blood test results? If so, post them on here, with the ranges, and let's have a look.

Secondly, 'normal' is meaningless. It's an opinion, not a diagnosis. When a doctor says 'normal', all he means is 'in-range'. But, the ranges are so wide that it's illogical to think that a person will feel the same if their TSH is at the top of the ranges as they would if it were at the bottom. There has to be a place somewhere in-between where the person feels at their best. And, that tends to be different for everyone. So, it's most unscientific for doctors to believe that anywhere in the range is as 'normal' as anywhere else. It isn't.

Levo isn't a drug. It's a thyroid hormone replacement. Levothyroxine, T4, the thyroid storage hormone. "a drug not to be messed with" What do you mean by that? Levo is not dangerous. It won't hurt you unless you take a lot too much. And if you did that, you'd feel so ill, you'd stop it! And, even if you do over-dose on it, it won't cause immense problems. You'd get retested six weeks after starting it, and if it was too much it would be reduced. Hormones are always started at a low dose and increases slowly. So, your fears on that score are unfounded.

Nothing mixes well with levo if you take it at the same time. Levo needs to be taken on its own, on an empty stomach, and other medications/supplements taken at least two hours later.

Propranalol could have an effect on your conversion of T4 to T3, but your doctor could change that for a different Beta Blocker. And, an HRT patch won't have any effect at all.

So, the situation isn't as dire as you seem to think. :) And, if you post your results and ranges, I'm sure we'll be able to give you some positive help. :)

BlueBlackCatLady profile image
BlueBlackCatLady

I rather suspected I'd be asked this! If you can believe it, I'm still waiting to actually see my results - I was only told verbally. I have asked my consultant's secretary for a copy of them but have not yet received them and I'm in the process of chasing her over it. All I can tell you is that they were 'normal' (with negative antibodies etc.) - although your right in that both the consultant and myself and husband pointed out there's no such thing as 'normal - but of course I was told so quickly that I could not possibly have taken it all in - though my husband seems to think my THS levels (which I'm confused on any way!) were 4.5, which the consultant did say was at the 'upper end'. Despite that, he said that, under normal circumstances, he would not have suspected any problems. He said it was only down to my medical history and what I'd explained, plus my family medical history etc., that made him think it might be worth 'taking a chance' in giving Levothyroxine to see if it made any difference.

According to Hugh's book (as mentioned by me in my previous posting) even the tinnitus, vertigo and most other fibromyalgia symptoms (of which I have 63 out of 65 and which I have had for nearly 40 years) can be as a result of problematical thyroid levels - but not necessarily a *lack* of thyroxine it seems! So why give me yet more thyroxine?!

I had post-natal psychosis after the births of both my sons, thirty two and twenty two years ago respectively now - the first time meaning I was hospitalised (psychiatric hospital)

for over a year. I have only recently read that this rare condition can sometimes be brought on my too much thyroxine being released (along with other hormones) at the time of birth. Yet more 'pieces of the jigsaw' fitting!

My 'worry' regarding using thyroxine is that I am ultra-sensitive to any medication - hormone of otherwise - and there are a number of contra-indications specified in Levothyroxine's accompanying leaflet. I am someone who always gets 'side effects' and my illness/life is so bad right now that, naturally, I need to err on the side of caution when starting something new.

I'm not happy with the 'one size fits all' attitude to Levothyroxine.

Once I get my results, I will post them online. A million thanks for your response and interest! :-)

Marz profile image
Marz in reply to BlueBlackCatLady

greygoose will not have seen your Reply as you inadvertently replied to yourself. Easily done ! I have tagged her so she will soon reply ...

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

Oh, how did I manage that?! Must be dafter than I thought!! Thanks for sorting this out for me … :-)

Marz profile image
Marz in reply to BlueBlackCatLady

Very easy - we sometimes forget to click Reply below the person to whom we wish to respond ! ...

greygoose profile image
greygoose in reply to BlueBlackCatLady

Well, this so-called specialist doesn't know much about thyroid, does he. A TSH of 4.5 is hypo - it's hypo when it gets to 3 - although the sadistic NHS refuses to believe it and likes the TSH to get to 10 before they deign to diagnose!

TSH isn't even a thyroid hormone, it is made by the pituitary. When the pituitary senses that there's not enough thyroid hormone circulating in the blood, it increases its output of TSH. When thyroid hormone levels in the blood increase, the pituitary reduces its output. Only, it's not really reliable, because if there's any thyroid hormone in the blood, the pituitary gets first dibs! So, just because the pituitary is satisfied, doesn't mean that all your millions of other cells are equally satisfied. But, that's what doctors learnt in med school, that the TSH tells them all they need to know, so that's all they look at and fail utterly to understand how it all works.

A 'normal' TSH - i.e. the TSH of a person with no thyroid problems - is around 0.8 to 1.2. So, you can see that a TSH of over 4 is too high. It is definitely not 'normal'. But, another thing that doctors aren't very good at is English vocabulary!

can be as a result of problematical thyroid levels - but not necessarily a *lack* of thyroxine it seems! So why give me yet more thyroxine?!

I am covering myself in sack-cloth and ashes, because I have not read Hugh's book. So, I'm not really sure what he means by that, nor how it applies to you. Did you have your Free thyroxine tested so that you know if you lack it? We absolutely need to consider blood test results, otherwise all the theory is just that. Theory. We need hard facts. If your thyroxine level is low then you need more thyroxine.

What I imagine he means is that we can still be hypo even if we have plenty of circulating T4 (thyroxine), for two reasons: a) we can't convert the T4 (storage hormone) into T3 (active hormone) very well - and it's low T3 that gives us symptoms b) that we convert it ok, but the resulting T3 can't get into the cells, for whatever reason - and that's what his book is about, thyroid hormone resistance - T3 that can't get into the cells thereby causing all sorts of symptoms. I don't think many doctors know anything about that.

Obviously, if we have plenty of T4 but can't convert it, we don't need more T4, because that would just make our conversion worse! What we need is T3. But, if the we can convert ok, but the resulting T3 can't get into the cells, then the only solution is to raise our levels of FT3 very high to flood the cell receptors. And, if you convert OK, then taking more T4 will achieve that. So, in that case, you would need to take more T4 even though you have good levels, and good levels of T3. Thyroid hormone doesn't do anything in the blood, it only helps if it gets into the cells.

OK, so in other words, you went hyper after the births of your sons. Yes, that happens, and probably not as rare as they would like to think! Shutting women into mental hospitals for that is barbaric. Could they not just have given you anti-thyroid meds? But, that does rather suggest you could have Hashi's. Has that been considered at all? Have you had your antibodies tested?

Being ultra sensitive to hormones can have its advantages - unlike me to whom you have to take a sledge-hammer to get any results! But, I think I really do have thyroid hormone resistance, and at one point had to take 225 mcg T3 in one go, and still felt hypo! It's better, now, but I still need 75 mcg T3 only to live. But, you cannot know how you are going to react to anything without first trying it. And, what is needed is a doctor that gives you the freedom to experiment with doses and brands, etc. Not one that dictates a dose and won't listen to his patient. Do you think you have that sort of doctor there? One that will allow you to buy your own T3 and/or NDT, and still monitor you, and not insist you have to stick to levo only? If not, don't bother with him anymore. Try and find a more understanding doctor. They do exist! But they're very rare. And, if you don't find one, the only alternative is to learn about your disease and treat yourself. That's what I do. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

Thank you for such a lovely in-depth reply - I really appreciate it! It is wonderful to have things explained 'properly' - perhaps you should take over from some of these so-called doctors - seriously! It's obvious you know more than most of them. In my reply to Marz, I have explained a little about my feelings for doctors (having seen what must be literally hundreds over the years now and who, for many years, labelled me as 'mad' or 'attention-seeking' before a final diagnosis just a few years ago of fibro. Wiith the exception of a few, it seems most medical professionals have great difficulty in 'thinking outside the box' of which I definitely fall! I will indeed see how the whole Levothyroxine thing goes now and see how I feel on my return to see this Consultant. I have to confess to being rather disappointed in him so far (just my luck!) :(

Again, as explained to Marz, I myself have read up, learned (and in some cases have had basic training) in alternative therapies over the years but also realise there is a time and place for conventional medicine. It's just unfortunate/sad that the administration of such is brain-washed/influenced by the profits to be made from these huge pharmaceutical companies with doctors usually being too scared to 'stick their necks out' or give honest opinions/diagnosis.

In answer to your post-natal psychosis question - unfortunately (the first time when I was hospitalised) I got into the hands (via my elder sister) of some so-called Christians who saw my problems as being demonic and 'exorcised' me (Christian 'Deliverance' service) … As you can imagine, this only exacerbated things and meant it was another 2 years before I made a full recovery. It was hell on earth at the time as psychiatrists pumped me full of the most horrendous mind-altering drugs which basically turned me into a zombie! Even though this was over 30 years ago, I still have nightmares …

As for the antibodies and Hashimoto's: the former (blood tests taken recently) were said to be negative and no one seems to have considered the latter yet, though I did vaguely mention it to this current consultant. To be honest, mine is such a complicated case of such longevity, that I think I blew the poor man's mind!! :-)

Thanks again for all your help and understanding. As explained previously, I will post my actual blood test results once I've got them. :-)

greygoose profile image
greygoose in reply to BlueBlackCatLady

Doctors are not taught to think at all. They are taught that all they learn in med school is sacred and nothing else should be considered. For the most part, they just accept that and tow the line. Those that do dare to step out of line and actually make their patients better are denounced by their peers - not their patients, though! - and risk losing their licence. That, in itself, discourages thinking outside the box. Or even in it! Just do the blood tests and prescribe the drugs! In any case, the NHS - and most other health organisations - are so badly run, and therefor over-stretched, that they do not have time to think!

I'm afraid alternative therapies are not much use in the endocrine system. And, lord knows, I've tried enough of them myself! You cannot do better than hormone replacement therapy - provided it is done properly. And, there's the rub, most doctors don't know how to do it properly because it is not in the interests of Big Pharma for them to learn. BP is making several small fortunes out of 'treating' all our symptoms as individual diseases. And, he who pays the piper, calls the tune. So, doctors who just go through the normal med school system do not learn enough about hormones to use them to any good effect. At least, not as far as us odd-balls are concerned! So, whilst alternative therapies might add to your sense of well-being - Bach flowers, acupuncture, and such like - they're not going to over-come the basic problem, which is a deficiency in certain hormones. There has never been a therapy that can heal or restore a failing gland. Maybe, one day, but as things stand, all we can do is replace those hormones we lack. Because hormones are the source of all life.

Your stay in the psychiatric hospital, and all that went before, must have been horrendous. You must be a very strong lady to have survived it all. But, women who suffer from hormone disruptions have often found them selves in mental institutions. I've known quite a few. It is a disgrace in this day and age that understanding of hormones is so primitif. I'm not surprised you still have nightmares, I think most of us would.

As for the antibodies and Hashimoto's: the former (blood tests taken recently) were said to be negative and no one seems to have considered the latter yet

Sorry, I wasn't very clear about that. Testing the antibodies is to see if you have Hashi's. Doing the tests can prove that you do have it, but cannot prove that you don't. A negative test doesn't mean much. Antibodies fluctuate, so just because they were low when that blood was drawn, doesn't mean they always are. Also, there are two types of Hashi's antibodies - TPO and Tg. The NHS only tests the TPOab. But, if your TgAB were high, that too would prove you have Hashi's. And, as if things aren't complicated enough, you can actually have Hashi's without ever having high antibodies. The antibodies are not the disease, just an indication that you have it. These people are diagnosed by ultrasound when the damage becomes bad enough to be visible. So, even with that negative TPOab test, you could still have Hashi's. Also, the NHS doesn't like calling it Hashi's, for some unknown reason. They call it Autoimmune Thyroiditis. That is an accurate description, but ignores the man that first documented it. :) And, if you do have it, it could possibly explain all your complications. So, it's in your interest to find out.

I look forward, with interest, to seeing your blood test results. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

I seriously think you should write a book on all this! There are people out there, myself included of course, absolutely desperate the hear 'the truth', hence Hugh's book that I previously mentioned which is much along the lines of your own reporting/thinking. The world is a very immoral place I'm afraid and it seems will always put high profit over and above patient's genuine health needs - it's disgusting really; I think maybe if more doctors were ill (especially with our sort of conditions that don't fit 'the norm'), they would be thinking again!!

You are absolutely right of course in that alternative therapies can only ease, or perhaps at best, take the edge of hormonal problems (or indeed any ailment really) but I wish the sort of practitioners (exception of a few!) that are involved in such things could be the GPs issuing out the prescriptions as they normally have far more compassion and common sense! Then again, of course, it's back to money as most in the private sector have the time and incentive to look at patients.

I will look more closely at Hashi's now (I'd heard of autoimmune thyroiditis but didn't realise they were the same condition) and will be very interested in your thoughts on my blood test results (once this damn secretary gets off her back-side and sends them to me! LOL! :D)

greygoose profile image
greygoose in reply to BlueBlackCatLady

I don't think I'll be writing any books. :) There are plenty of books out there, written by people far more knowledgeable than I. I'll just stick to talking to people on here. :) But thank you for the compliments.

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

Well, I for one, am grateful for your thoughts :-) I know there are a lot of books on thyroid but, being totally honest, I just find most of them really confusing! Someone like yourself - with first-hand personal experience - is far more beneficial to the 'layperson'; especially as so many of these books contain such technical jargon. :-)

greygoose profile image
greygoose in reply to BlueBlackCatLady

I think the main advantage with 'me', and others on this forum, is that you can interact with us. You can't ask a book questions. Although you can ask questions of HughH , because he is on this forum. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

How can I contact Hugh please … I don't have his username for on here and, even if I did, how does that then work? :-)

greygoose profile image
greygoose in reply to BlueBlackCatLady

I've just done it, above. Hopefully, he will be notified, and read this thread. His user name is in blue. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

Thank you SO much! :-)

greygoose profile image
greygoose in reply to BlueBlackCatLady

You're very welcome. :)

SlowDragon profile image
SlowDragonAdministrator

Absolutely essential to test vitamin D, folate, ferritin and B12

Low vitamins are extremely common when hypothyroid

Propranolol tends to lower magnesium too. Magnesium and vitamin D work together

Propranolol also affects thyroid hormones

Obviously you need to find our exactly what has been tested and equally important what hasn't

You are legally entitled to printed copies of your blood test results. Chase this up asap

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Fibromyalgia is often low FT3

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SlowDragon

Thank you so much for all this! I realise the NHS don't do the 'right' or full spectrum of blood tests re thyroid, hence now going private. However, until I get a written copy of what was done/results I'm totally bamboozled really!

My vitamin D levels were tested years ago (in connection with my fibro) and I was discovered to be highly deficient in such and put on both injections (initially) and then tablets. However, in more recent times, my levels have apparently gone right up and my GP (of the time) advised I no longer needed to keep taking vitamin D. I do however take a multi-vitamin which is high in both vitamin D and across the range of B vitamins.

As explained to others who have kindly responded to me on here, just as soon as I get these elusive test results, I will be posting them on here for opinions!

Thanks again for taking the time to reply :-)

Marz profile image
Marz in reply to BlueBlackCatLady

Oh dear a multi-vitamin - don't let greygoose see that :-) We do not recommend multi's as you rarely get enough of the the things you need and if you increase then you may have too much of something. Multi-s often have nasty fillers too and not always the best ingredients. The pillars of wellness are the ones we all mention - B12 - Folate - Ferritin - VitD. All these need to be optimal for your thyroid hormones to work - both yours and the ones you take. So B12 is good around 500+ - Folate and Ferritin - mid range and VitD around 100+

You should have stayed on a maintenance dose of VitD with the important co-factors - magnesium and K2-MK7.

Did you click onto my username and read my Bio ? - I too was diagnosed with Fibro back in 2000 by a consultant and then Hashimotos here in Crete in 2005 - after a lifetime of illness.

greygoose profile image
greygoose in reply to Marz

You shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation protocol based on the results. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

Yes, I realise it can be a bit 'hit and miss' with multi-vitamins but I have also experimented with single supplements in the past, most of which don't seem to do much anyway if I'm honest. :-) As I keep being told that I am borderline diabetic, I try to take chromium (which this supplement has) to help control blood sugar levels. That's another issue actually - one GP (now left) was adamant that I wasn't yet diabetic - merely still 'borderline' - whilst others insist I am actually diabetic and tried to ply me with yet more drugs. In view of my own feelings about pharmaceutical companies, and not wanting to be on yet more medication, I have refused both the diagnosis and treatment so far. Also, many years ago, I was diagnosed as having hypoglycaemia (low blood sugar), from which I've suffered all my life. No medical professional has been able to answer my question of if I'm hypoglycaemic, what happens if the tablets lower the blood sugar levels too much?! That, like so many things, seems to fox them!! Although a chemist (who's advice I'm now following) suggested not taking them in view of this … Chemists, IMHO, are usually SO much better and more knowledgeable than doctors!

But back to the multi-vitamins - the ones I'm currently using do have a wide range of the B vitamins (as well as the chromium previously mentioned), plus vitamin D and are of a good quality. My own views are that I am better to have some (even a little) of something rather than nothing. But I am constantly reviewing such things and tend to dip in and out of both my thoughts on such and my usage!

I'm rather hoping that these elusive blood tests might show some of my vitamin levels. :-)

greygoose profile image
greygoose in reply to BlueBlackCatLady

We usually only get nutrient tests done if we specifically ask for them.

But, it's not a question of being 'hit and miss' with multi-vits, it the problem of the wrong or the right ingredients and the right quantities.

Does your multi contain: iodine, copper, calcium or iron? If so, at best it's useless, at worst it's dangerous.

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

Please can you now look at my most recent response to Marz - I tried to copy and paste the results I'm showing directly to yourself but the format gets messed up and makes it almost impossible to read …

Hopefully you can now see my blood test results this way and, again, I would be so grateful to you for your opinion. Thanks! :-)

greygoose profile image
greygoose in reply to BlueBlackCatLady

OK, but you haven't given the ranges. We always need the ranges because they vary from lab to lab. But your TSH is too high and your Frees would appear to be on the low side. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

As previously explained, everything is well 'in range' - mostly mid range according to their lab, apart from the ones I've highlighted (with asterisks) and explained separately. According to the lab ranges my TSH Free T3 and Free T4 are pretty much bang on midway.

As I am feeling really unwell today it's been a real effort to get these results across and, having typed it all up several times, it was difficult to then add it all back in when posting. (Originally it was all set out properly with tabs but the format messed up when posting.) And a PDF file which I'd changed it to can't be posted as an attachment on here. Nightmare actually! :-)

Any way, if you count down the list - making no. 1 the Thyro-globin Antibody result, no. 2 The Thyroid Peroxiclase Antibodies etc., etc. … all the way down to the ESR level being no. 15 - the ranges are as follows:-

1) 0 - 115 ) Roche Modular

2) 0 - 34 ) " "

3) 133 - 537 (taken at 9.00 am)

4) 75 - 200

5) 2 - 11.5

6) 211 - 911

7) 10 - 291

8) 0.35 - 5.5

9) 3.5 - 6.5

10) 10.3 - 22.7

11) 9 - 55

12) 0 - 21

13) 0 - 40

14) 30 - 126

15) 0 - 12

I should also have added that my MCHC level (blood count) is slightly low at 327.0 (range being: 330 - 370)

greygoose profile image
greygoose in reply to BlueBlackCatLady

But bang on mid-range is rarely optimal for anyone. Most hypos need their levels much higher than that. And, just saying 'in-range' is not an acceptable substitute for giving ranges. That's not how it works.

Sorry, no, I'm not going to count down the list and keep scrolling up and down to see your levels.

BlueBlackCatLady profile image
BlueBlackCatLady in reply to greygoose

Please remember it's not me who's saying these levels are 'in range' - only the lab. I wish I could show you the list as I'd typed it - which had the range levels at the side but I can't - so sorry. As explained, there are obvious high ones (which I've asterisked) and, even if you don't actually look at the ranges that I've listed for each one, the answers will be the same - according to the lab (not me!) they are all pretty much middle, except for the ones I've mentioned. Different labs have their equipment set to slightly different levels (I realise that) but also, after discussion with Slowdragon, it sounds like I possibly should have fasted (I said as much at the time but, as usual, no one listened!) Also I believe some of the multi vits I was on at the time might have changed things slightly. Again, I mentioned this to the consultant but he said it wasn't a problem … but then you and I both know how opinionated and stubborn these consultants/doctors can be! :-) Thanks for your efforts any way.

greygoose profile image
greygoose in reply to BlueBlackCatLady

Well, I wouldn't expect your consultant to know anything about that, anyway. I wouldn't even have asked.

Did your multis contain biotin? If so, that can skew results, but you don't really have any outlandish results suggesting that they'd been skewed.

I realise it's not you saying that the results are perfect in the middle, but I'm just telling you that that is highly unlikely to be high enough for you. I'm just saying that when you give results, please give the ranges with them, not just the lab's opinion, or they will be meaningless. :)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

Yes, I realise it can be a bit 'hit and miss' with multi-vitamins but I have also experimented with single supplements in the past, most of which don't seem to do much anyway if I'm honest. :-) As I keep being told that I am borderline diabetic, I try to take chromium (which this supplement has) to help control blood sugar levels. That's another issue actually - one GP (now left) was adamant that I wasn't yet diabetic - merely still 'borderline' - whilst others insist I am actually diabetic and tried to ply me with yet more drugs. In view of my own feelings about pharmaceutical companies, and not wanting to be on yet more medication, I have refused both the diagnosis and treatment so far. Also, many years ago, I was diagnosed as having hypoglycaemia (low blood sugar), from which I've suffered all my life. No medical professional has been able to answer my question of if I'm hypoglycaemic, what happens if the tablets lower the blood sugar levels too much?! That, like so many things, seems to fox them!! Although a chemist (who's advice I'm now following) suggested not taking them in view of this … Chemists, IMHO, are usually SO much better and more knowledgeable than doctors!

But back to the multi-vitamins - the ones I'm currently using do have a wide range of the B vitamins (as well as the chromium previously mentioned), plus vitamin D and are of a good quality. My own views are that I am better to have some (even a little) of something rather than nothing. But I am constantly reviewing such things and tend to dip in and out of both my thoughts on such and my usage!

I'm rather hoping that these elusive blood tests might show some of my vitamin levels. :-)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

I've replied below now - which I hope you can view/see - but also just wanted to say that I did read your bio. :-) I think the whole fibro thing (and anything 'outside of the box') is just so complex and so confusing and doctors just aren't prepared (and don't have time on the NHS) to really do all the research needed. We all know that 'fibro' now is just an umbrella title and, as you discovered, doesn't always totally fit the bill. It's amazing how many of us have really been through it in our lives - and it shouldn't be like that. We all know it's an imperfect world but a bit more compassion and understanding from the medical profession wouldn't go amiss as you yourself will know only too well.

I'm so sorry to hear about your little dog. I also wish you still had your guesthouse as I think I'd be happy to be a guest there - I could certainly do with some sunshine right now - and I love olives!! But I'm sure you'd rather be having a well deserved rest from all that and I truly wish you well. Your story gives me hope that there are answers (even if you have to find them yourself - as I've always suspected I'd have to!) :-)

Marz profile image
Marz in reply to BlueBlackCatLady

It's not just Fibro that is confusing - try telling Docs you had Gut TB and now have Crohns - they do not believe it is possible ...

BlueBlackCatLady profile image
BlueBlackCatLady in reply to Marz

AT LAST! I've now managed to get my blood test results from my consultant's secretary. Unfortunately she sent them by email in a scanned format - and each one separately - which made them difficult to read. I have deciphered them as best as I can and they are as follows:

Thyro-globin Antibody < 10.0

Thyroid Peroxiclase Antibodies < 9.0

Cortisol 361 nmol/L

(Taken at 9 am ref range [6 - 10mm] 133 - 537 nmol/L)

Vitamin D 97.37 nmol/L

Serum Folate * 720.00 µg/L

Vitamin B12 * 974.4 "

Ferratin 138.4 "

TSH 4.10

Free T3 4.2

Free T4 13.7

ALT 20

Billirubin 5

AST 16

ALP * 155

ESR * 28

Most of the results were 'in range' with the exception of the ones I've put an asterisk against - Serum Folate (at 720.00 - and with a range that should be 2 - 11.5 - means this is massively over), Vitamin B12 (range should be 211 - 911), ALP (range should be 30 - 126) and my ESR level which is more than twice the range (0 - 12) …

Whenever I have had these ESR levels (Erythrocyte Sedimentation Rate) checked, over the years, the results have always been high but, other than to suggest I'm an alcoholic - I rarely touch the stuff! - no medical professional has been able to explain what it means and they never seem bothered by it. I take it to mean that there is a high level of inflammation in the body - i.e. the Fibromyalgia.

High ALP levels are rather worrying as (according to the internet) this could indicate problems with the liver - though my actual liver tests (urea, billinbin - presumably ?) are well within range.

I have not bothered to list all the results because, as previously explained, everything else is 'in range', e.g. calcium, phosphate, protein, magnesium, sodium etc. etc.

I would be SO grateful if you could now just have a quick look at these results please and give me your honest opinion. I look forward to your thoughts and thank you in advance! :-)

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SlowDragon

Please can you now look at my most recent response to Marz - I tried to copy and paste the results I'm showing directly to yourself but the format gets messed up and makes it almost impossible to read …

Hopefully you can now see my blood test results this way and, again, I would be so grateful to you for your opinion. Thanks! :-)

SlowDragon profile image
SlowDragonAdministrator in reply to BlueBlackCatLady

B12 and folate are very over range, presumably you have been supplementing.

You need to reduce supplements significantly. Especially folate

What exactly have you been taking?

Did you stop all supplements that contain biotin for week before test, as biotin can falsely affect all blood test results too

Vitamin D and ferritin are fine

TSH is too high, strongly suggests hypothyroid

Do you have the ranges on FT4 and FT3, they look low in range

Thyroid antibodies are low, but you can have Hashimoto's and never have raised antibodies so this doesn't definitely rule Hashimoto's out

Have you ever had glandular fever?

Whiplash

Or head trauma?

ESR is presumably above range

healthline.com/health/esr#c...

ALP - is this above or below range?

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SlowDragon

I apologise for not being able to send the results to you directly but if you check out greygoose now you will see that I have added the ranges and a few other notes. Anything where I've put an asterisk is way too high on these results, not just the B vitamins, as you've picked up, but the ALP - which is where I'm saying it's quite worrying IMHO.

You are right that I've been supplementing with vitamin B - but not deliberately the B vits as I've had trouble with them before. The supplement I'm taking is a multi-vit to include chromium as I'm trying to help my blood sugar levels - the GP insists I'm diabetic, though my results show 'borderline' to be honest. However, this supplement does contain high vit B (which I hadn't realised until now) and quite high biotin - and I was taking them on the day of the tests - which were done at 9 am without fasting (they insisted I didn't need to fast when I asked!)

And yes indeed I've had whiplash (suggested in the past that I'd damaged my pituitary gland in a fall where I had the whiplash at the age of 14 (fell into the road from the back of one of the old open-backed buses and also had numerous falls from horse riding when young.) I definitely sustained a bad head injury at the time and my migraines/headaches increased thereon afterwards. I've seen countless osteopaths/chiropractors etc. over the years to try and rectify this. I also have chronic tinnitus (24/7 at the highest level for nearly 40 years now - both ears - and very debilitating) and scoliosis and problems with the base of my spine. TMJ also - in fact the list is endless!!

If you look at my responses to both Marz and greygoose, hopefully it will all fit together now. Thanks for your viewing/help - I really appreciate it. :-)

SlowDragon profile image
SlowDragonAdministrator in reply to BlueBlackCatLady

So

TSH 4.10 (0.35-5.5)

This is pretty high, certainly higher than average population

FT4 13.7 (10.3-22.7)

Low in range

FT3 4.2 (3.5-6.5)

Slightly low in range

ALP 155 (30-126)

High

ESR 28 (0-12)

High

We generally on here never recommend multivitamins. Most are mix of many things we don't need, eg iodine, usually cheap ingredients and not useful

Suggest you stop supplements and retest in 3 months

Interested in GP saying about diabetes

What is your Hba1c result?

diabetes.org.uk/guide-to-di...

Low carb, high protein and good fats can really help lower blood sugars

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SlowDragon

Yes, I realise this - I actually part-trained as a herbalist, so I'm aware of all things dietary - and have followed good diets for many years. If my memory serves me rightly I think my Hba1c results come out about 4.5 - 5 (I used a home glucose monitor for a while - at the GP's advice) and, apart from a few 'blips' where the levels shot up to around 7 - 8 (and once 10 - following a meal out with a very sweet dessert!), that was mostly the level.

I'm interested in you asking me if I'd had whiplash etc. - what made you ask that if you don't mind me asking?

SlowDragon profile image
SlowDragonAdministrator in reply to BlueBlackCatLady

Whiplash can cause hypothyroidism

verywellhealth.com/thyroid-...

stopthethyroidmadness.com/c...

BlueBlackCatLady profile image
BlueBlackCatLady in reply to SlowDragon

Wow! Thanks for this (and for all your help of course) - I never knew that (though I was aware of the connection with Fibro.) :-)

SlowDragon profile image
SlowDragonAdministrator

Was this test done as early as possible in morning and fasting?

Median TSH graph shows that TSH is likely too high

healthunlocked.com/thyroidu...

TSH daily variation - demonstrates why test should be early morning

healthunlocked.com/thyroidu...

Hi

Are you seeing an Endocrinologist?

No need to reply. Look it up get an explanation of that they do!

BlueBlackCatLady profile image
BlueBlackCatLady in reply to

Yes, it's the endocrinologist who did the blood tests I'm referring to and is why I've posted this question - I've gone for years trying to find a good one but I'm not so sure I have now! :-)

in reply to BlueBlackCatLady

If you are that unsure, get a second opinion. I am not sure what the difference are in other states or countries. Any time I am not sure about my health that is what I do.

BlueBlackCatLady profile image
BlueBlackCatLady in reply to

Yes, same here and I will do if I'm not happy. :-) However, I've only just starting seeing this consultant and not yet started on Thyroxine so I will have to give both a chance first. :-)

in reply to BlueBlackCatLady

I went to several doctors before finding one who help me!

It too several years.

I had gotten pretty bad.

Don’t stop until you find what you need.

BlueBlackCatLady profile image
BlueBlackCatLady in reply to

My list of GPs/doctors/specialists etc. that I've seen over the years must be well in the 100s now as I've been trying for nearly 40 years!! But I'm still determined to find answers! I've been ill since my teens but I'm determined to get there in the end! Thank you for your encouragement/support! :-)

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