HELP PLEASE - I'M CONFUSED!

[thelady2003uk]

I have been posting on here for many years now due to the fact that I was diagnosed with hypothyroidism in 2007 and to date although I have been told by endo's that I have tried every thyroxine and NDT on the planet as well as various T3 I have not been able to tolerate any of them, I believe this is due to allergies but I am fighting at the moment to get this investigated by an Immunologist. The reason I am confused is because over the last 7 years the highest my TSH has reached was 13.4 in May last year. This year I changed GP and they did the usual thyroid tests and in January my TSH was 40.32, T4 was low at 10.3 . In April TSH was 7.66, T4 13.3 and my TPO was 271 (ref range <101 is normal). Last week I had blood tests during a consultation with my endo and he sent me a letter today saying that my TSH is 4.55 and that there is no need to worry about getting me onto thyroid meds, I assume because he didn't mention T4, T3 or TPO that they must have been normal or he would have mentioned them. As you can imagine having had a diagnosis in 2007 and never having been on any meds for longer than 2 weeks I really do not feel well at all. I just do not understand why my TSH is going up and down and my TPO antibodies which have always been around 10 suddenly shot up to 271 last month and now it's normal again. Can any of you very knowledgeable people help me make sense of this please because I am totally at a loss. Many thanks to you all.

[helvella Administrator Thyroid UK]

We very often see the claim that positive TPOab and/or positive TGab are diagnostic of Hashimoto's. Then we can read the following quote specifically in relation to Graves:

More than 95% of patients have positive assays for TPO (microsomal antigen), and about 50% have positive anti-thyroglobulin antibody assays.

thyroidmanager.org/chapter/...

This seems to raise a lot of questions as to the overlaps between Graves and Hashimoto's. And certainly questions whether it is rare to have both.

[thelady2003uk in reply to helvella]

Thanks for this Helvella, I have saved the Thryoid manager article and will look at it properly tomorrow in daylight as my eyes are so bad I cannot see very well at night. I had an MRI scan last year and it revealed a 2mm micro adenoma but because it's so small all of the medics tell me that this couldn't be causing my symptoms, I think it's rather strange that I was fine until 2007, then I developed hypo, bad headaches, blurred/double vision and a very long list of other symptoms, then I had an MRI in 2014 which revealed an adenoma albeit a small one, it seems too much of a co-incidence to me, but of course how should I know I'm only the patient! I have nearly all of the symptoms on the graves article and am now at a loss as to what to do, as I said on my original post this new endo thinks I'm ok so he's in no rush to help. I wish doctors could live with us for a couple of days and see how ill we are, when we sit in front of them for an hour they cannot get any idea of how we feel, even though we tell them and they have blood test results which they seem to ignore. It is very frustrating, my health is going downhill FAST and there seems to be nothing I can do about it. Thanks a lot for taking the time to answer me. Take care

[Hidden]

Hello thelady2003uk,

Are you saying that you have tried every thyroxine and NDT on the planet as well as various T3 all for never longer than a two week period?

It can take up to 6 weeks for an initial dose of Levothyroxine to totally saturate the body and some people experience terrible symptoms until meds finally encourage a more balanced hormone level.

Flutuating antibodies will be complicating things further and if you have environmental allergies, it could be any number of things causing it.

I think you should try meds for a longer period of time as you will never get well with an under medicated thyroid hormone balance.

Good luck,

flower007

[thelady2003uk in reply to Hidden]

Thanks to you all for your replies, I have been thinking for a while that I have the symptoms of both hyper and hypo and that's why I am at a loss as to why my endo didn't suggest Hashi's and/or Graves last week. Flower 007 I think I may have misled everybody in relation to the meds that I cannot tolerate. I have tried every Thyroxine and NDT available (as far as I am aware) and every one of those I have only been able to tolerate for between 10 minutes and 1hour, I ALWAYS get very severe breathing difficulties nearly as bad as anaphylaxis and have to take an allergy tablet then my breathing goes back to normal. The T3 is the only one that I could tolerate in very small doses (about 3mg every other day) for a couple of weeks but then once that had built up in my system I had the same reaction - breathing problems. I have seen 4 endo's over the years and not one of them sent me for allergy tests so I am really glad that I read in the letter today that this current endo is open to the idea of sending me to an immunology clinic. Early in my diagnosis one of the endo's did ask me to keep going with Eltroxin solution, she told me that my body needed time to get used to it, so I stayed with it for 2 days and my husband had to call an ambulance in the middle of the night because I couldn't breathe and I'd gone blue, so I'm afraid that theory is out of the window for me. I would love to be able to tolerate thyroxine long enough for it to make me feel normal for a while but unfortunately, I just can't. Thanks again everyone for your replies.

[greygoose in reply to thelady2003uk]

Has anybody thought to test your adrenals? If they aren't working properly you will have difficulty tolerating thyroid hormone.

Also, when are your tests done? 8 o'clock? 10.30? Always at the same time? Do you always leave 24 hrs between your last dose and the test? Do you eat before the test? All these things can make a difference and can explain varying levels.

[thelady2003uk in reply to greygoose]

Hi, Yes I've had my adrenals tested more times than I can count and I've had the 24 hour urine tests about half a dozen times. They have always said that they are fine but more recently they are slightly low at 469. The Endo noticed that on my blood test last week and he said that we can discuss it next time I go to see him. I always have my cortisol tested at 9am in the morning by fasting blood test, and I have never had a last dose of anything when I go for the tests as I cannot tolerate any thyroid meds. Thanks for your reply,

[greygoose in reply to thelady2003uk]

Well, at least he's prepared to discuss it, that sounds hopeful.

[Hidden]

Well let's hope you find some answers with the immunologist.

I still think you would be better served with an endocrinologist whoses interests lie in people with extreme sensitivities such as yourself.

As you have already found, most thyroid medications contain common allergens such as cornstarch, lactose and even gluten, and even the natural porcine products like Armour suffer from issues with fillers.

However compounded T4/T3 products are thyroid meds that are made from scratch by a trained pharmacist without using any fillers or binders at all. They are especially tailored to an individual's needs and would be ideally suited to your someone like yourself.

Theses medications are obviously hugely expensive and may need refrigeration to preserve activity.

Where you find these products in the UK is another matter? And that is why I think you would still do better with another endo as an immunologist won't have specialised knowledge in thyroid hormones.

Best of luck

flower007

[thelady2003uk in reply to Hidden]

Hi, Yes I quite agree with you I would be much better off if I could find an Endo that is interested in people with extreme allergies, but the problem is that over the 8 years since this nightmare began I have had trouble finding a decent endo at all let alone finding one that has an interest in sensitivities as well. Nobody listens to me and nobody takes me seriously. I know exactly what's wrong with me as a lot of us on here do but getting the doctors to listen is the problem. I agree with you about the compounded thyroxine but again to get to that stage I need to find a doctor that actually acknowledges that I have allergies. I attended an NHS Immunology clinic in 2012 they gave me a small amount of thyroxine (3mg) by pin prick and I had my usual reaction to it, guess what the Immunologist said - It's a sunny day and it's hot in this room that's probably why you can't breathe! He then told me that I haven't got an allergy and to go home. That is the sort of garbage that I've been faced with for the last 8 years and believe me it really is getting me down. Not one doctor has ever really listened to me even though I have explained everything in minute detail THEY JUST DON'T LISTEN, sorry I'm getting frustrated as I write this as I'm sure you will understand. I was told I have coeliac disease in 2006 even though my TTG is always negative, so I went on a GF diet and adhered to it rigidly for 6 weeks and I have never had such stomach ache as I did then. My husband told me to eat normal food and see how I got on I was absolutely fine. I tried this three times and in the end I just ate normal food and as long as I eat what I know I can eat I am fine. I have recently found out that Xanthan gum which is in all GF food is a derivative of corn so that's obviously where the problem is. I was diagnosed with a corn allergy in 2009 but guess what - none of the doctors ever take it seriously. I am at my wits end and I just don't know where to go or what to do. I am crying as I write this out of pure frustration, 8 years of going round in circles has taken it's toll. Take care and thanks for writing.

[Hidden]

thelady2003uk,

Ask Louise Warvell (admin) for a list of sympathetic doctors and endos who have been recommended by members on this forum. They are both national health and private and you could telephone their secretaries to see if they have an interest in allergies.

It is miserable for you not to be able to receive the correct treatment.

Not sure about being diagnosed Celiac and then not. I have to follow a gluten free diet and certainly manage to eat lots of good food without xanthan gum in it.

I hope you find someone to help you because an under medicated thyroid gland gives horrid symptoms.

Good luck,

flower007

[thelady2003uk in reply to Hidden]

Thanks a lot for your help and support, it really is appreciated. I eat plenty of food without xanthan gum but what makes it so hard for me is this flipping corn allergy. I will ask Louise. Thanks again and take care.

[Hidden]

I know this is 2 years after the last comment but I was just reading through and noticed something of interest.

I have Coeliac Disease, have been diagnosed over 50 years (well twice diagnosed in fact but thats a longer story) so I've been on a gluten free diet for all those years and research is advancing more and more with regard to other foods which may be connected. There are about 19 foods currently earmarked as gluten 'cross reactors' that is to say they may mimic symptoms of Coeliac Disease or cause other health issues.

I can't remember all of the 19, (there is a definitive list in various places) but corn I'm pretty sure is one of them and coffee is another. I haven't really drunk coffee for about 25 years apart from a brief return to it about 3 years ago, but after a few days I felt ill (just generally unwell) and the only thing different was the introduction of coffee. So I cut it out again and started to feel better.

One of the other foods which is still up for debate is oats. When I was first diagnosed with CD some 40 years ago all Coeliacs were told not to eat wheat, rye, barley or oats. Oats were considered to be glutenous.

However in recent years research has shown that oats themselves are in fact gluten free. But if you were sticking to a gluten free diet and wanted to include oats, you must eat those which are clearly labelled 'gluten free' otherwise they may be packed in a factory where other cereals are used and contaminated with wheat etc. But - oats also contain a protein called Avenin which also mimics Coeliac symptoms and can bring problems. About 5 years ago I decided to try some of these gluten free oats and seemed OK initially, but suddenly noticed a general feeling of malaise. Cut out the oats and got back to normal (still not brilliantly well but more 'normal')

So worth looking at other foods in your diet.