My recent blood work shows my TSH is elevated at 5.89 (5.5 being the high end of range) my FT4 21.9 (9-22) and my FT3 came back as "High, out of range" no numbers/ ranges. My GP is trying to get these. My TPO is 978. Any ideas???? I'm being sent home with a pat on the back and nothing more. Without boring you all again, I'm feeling pretty crap. I've had some wonderful advice on here already. I'm going to see my GP after the weekend and I want some ideas as to what to ask her. I'm tired of being sent off with an anxiety label so this time i want to go in prepared and sound even a little knowledgeable lol maybe then they'll take me seriously????
I'm currently on 100mg eltroxin and 125mg every 2nd day. This hasn't been changed since May. An "urgent" referral was sent to my endo 2 weeks ago but as I'm a public patient who knows when I'll be seen. Im Trying to get the money together to see someone privately,think I might rob a bank lol (not that there's much in them lol )
Thanks everyone, I'd be lost without this group.
H xxx
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hazeljane
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Hazeljane, I've been thinking about this and having a little look online and there seems to be 2 things that come up, one is a pituitary problem, and the other is thyroid hormone resistance. Perhaps raise these 2 issues with the Endo, I really hope you get your referral soon. H x
Hi Hampster...many thanks for your reply I really appreciate it....here's hoping I get some answers soon. Just wondering what are your thoughts on beta blockers???thanks xxxx
Three guesses here. One is that you are over medicated, which is why you feel anxious. It's your T3 that is the important number, so your pituitary may simply not know when to shut off. You could try reducing your eltroxin to see if you improve.
Second is that you are possibly converting excess T3 into Reverse T3 as your T3 isn't being properly absorbed.
Third is that you appear to have quite a high antibody account. You possibly have Graves or Hashis so your TSH and other hormones could be swinging between hyper and hypo.
I'm sure others will have more sensible, informed answers.
I have personal thoughts on beta blockers - having been stuffed full of them when I was in my 20s. They should be taken only as a last resort if you are desperate. They made me so ill. If you have heart palps it will be because you are under or over medicated. You need to work out which.
Thanks so much for your reply I really appreciate it. I'll be sure to add your advice go my "list" and say it to my GP when I see her.
As for the beta blockers, I'm quite reluctant you take them. I know they're just a "mask" and nog a solution. My Bp is quite listen naturally so I've only been told to take 1/2 a 10mg tablet which really is a tiny dose, but it's a dose of something I'm not really comfortable taking. I'd rather get my thyroid under control first.
The fact that your TSH is elevated despite you taking thyroid hormone proves that the thyroid hormone is not getting into the cells. So T4 and T3 are just pooling in your blood (giving high FT readings) but not getting into the cells, where the active hormone is needed – looks to me like a case of T3 receptor uptake deficiency.
One reason for that might be adrenal weakness (lack of cortisol production), but it could have other causes like mineral- or vitamin deficiencies, sex hormone imbalance, food allergies, Candida Albicans infection … you name it. Another possible cause could be that your body is not happy with synthetic thyroid hormones – you might do better on natural desiccated thyroid. You will have to go through each and every one of those possibilities, correct and treat whatever the cause may be.
From your TFT results you do not appear to have a conversion problem – and that is good to know. You DO have autoimmune thyroiditis though (Hashimoto’s disease), and you will need thyroid treatment – please don’t let your doctor tell you that you won’t need thyroid hormone because your FT’s are “normal” now or even “too high”… they are high because all the thyroid hormone you are taking is pooling in your blood, making you thyrotoxic – and the T3 is not getting inside your cells – THAT is the problem, and your doctor should find out WHY by testing morning cortisol level (blood draw no later than 9 am, and no breakfast, no coffee or tea) your mineral and vitamin levels (iron status, B12, D3, folate, magnesium, zinc and copper) and check your sex hormones, check for coeliac and parasites…. You yourself might have to privately test for Candida Albicans (Genova offers salivary tests) if you think that this might be a problem for you. And it would help your cause if you were to switch to a strict gluten-free diet. You won't reap the benefits straight away, but it will help you in the long run. The gluten molecule is almost identical to the thyroid molecule, and your TPO autoantibodies misidentify and will attack gluten in the same way they attack your thyroid gland. So by eating gluten there will be warfare in your gut as well as your thyroid gland....
Many thanks for your reply I really appreciate it. You've highlighted many issues for me to look into so thank you.
I have recently had the short synachten test done for my adrenals but I'm yet to get the result. Thanks to fellow members on here helping me with my blood test results I now know I'm iron anaemic and have low folate, which I've started to supplement. I've also started taking magnesium and zinc. I have pernicious anaemia and I'm now on an injection every 12 weeks, as a result I have started to take sublingual b12. With regards to my sex hormones, I am oestrogen dominant and have only just got a period today, after missing my last 2. Could all thus oestrogen be causing anxiety???? It comes in rushes, similar to adrenaline rushes I guess. I feel absolutely rotten when it happens and it's pretty much all day/night long.
I had made the leap and went gluten free but after a very successful 1st week, my GP told me to reintroduce gluten as the endoscope I was recently referred for wouldn't be accurate unless I was eating gluten. But to be honest, I have felt dreadful since eating it again. I have had the blood test for celiac and it was negative. I have also had to give a sample to test for h.pylori in the gut.
Everything you've mentioned above I'll make noted off and say it to my GP next week so thank you very much. I'm really trying to educate myself, but with all this brain fog I'm not getting too far lol so I really appreciate your help. My hotmail trained under an endo so I'm hoping she might have the foresight to maybe offer me ndt instead of eltroxin, I swear it's the root to a lot of my issues.
Hi I agree with hampster that it could be a pituarty issue. I also have had some help from Dr Rinds thyroid matrix. maybe when you get the T3 level, you could see if any of these readings appy to you
Hi Pituitary more likely with low TSH. Also , modern research, if ever had a head injury, even a tiny bump as a child simple 24 hour urine test for that. PTH also likely , first testmust be AM, must be PTH ( parathyroid_, corrected calcium and vit D. If all high,or 2 high and D high for you. Nuclear scan and CT together for PTH and ultra sound for thyroid. You also need to rule out cortisone, That may be a problem with GP, not possible on line. MY Endo says the only test any use is 24 our urine collection, cortisone tablet, low dose, prescribed at midnight and a blood test at 9 am. All together.
Regarding the Endo. I would phone her/his sec. NHS and say that you are very ill and need an urgent appointment. When can you have one, is there a cancellation, any time? Usually works.If it does not, then send an e mail to the sec , with a letter on for her to give to the Endo, messages do not work!
Also do not forget all the other tests you need, associated with thyroid, especially Diabetes. However, Endo should, if any good, do them.
I'm just wondering would a pituitary tumour show up on an MRI???? I have just had one recently, and there was no mention of that. Thanks for the link ill have a look now =)
Sorry but I don't know enough to answer that - certainly some MRIs can detect extremely fine detail but they do vary - and use of contrast agents also affects what can be seen.
There is always the issue that even with the best will in the world, someone looking for one feature might not notice another one.
If post the results of the SST here once you have them, the picture might become clearer, although from the info you have provided so far the pieces are falling nicely into the puzzle. Since you have been diagnosed with PA (and I assume you have, as you are getting B12 injections) then that alone could be the culprit for the T3 uptake resistance of your cells - although I am pretty sure that there are other issues besides your PA that need rectifying.
When suffering from PA 3-monthly B12 injections are insufficient treatment. PA is an autoimmune condition in its own right - the inability to absorb B12 from the gastrointestinal tract. Its treatment is 1 mg of Vit B12 injections (im or sc) every day for one week after diagnosis, followed by weekly injection for a month and an injection once a month thereafter….. Please see: medicinenet.com/pernicious_...
If your doctor has not followed that treatment schedule, then please ask him or her to do so now….
I am not sure if B12 sublingually does help much in case of PA – some say they do, others maintain they don’t – injections is the way to go, but the nuggets won't do any harm, so you might as well carry on.
You are bound to be low in iron – please ask your doctor for a complete iron status – Ferritin, serum iron, transferrin saturation%..... Until and unless your ferritin is at least above 70, no thyroid hormone will enter the cells… optimal figures for ferritin are 100 – 130… and for proper thyroid utilisation you need “optimal”.
Very important: Never, ever, take iron supplements anywhere near your thyroid medication. Leave at least 4 hours either side !!
Folate needs to be in the upper third of its ref range – typically around 18/19.
Make sure your D3 is around the 100 mark.... I would take 1000 iu of D3 per day indefinitely anyway, but certainly during the winter.
Oh - and make sure you have sufficient stomach acid. I very much suspect that you will be low - unfortunately low and high stomach acid have exactly the same symptoms - so doctors in their wisdom treat for "low" acid... and make the situation very much worse. Most Hypos are hypochlorhydric (low stomach acid) and need Betaine HCL. please read: drmyhill.co.uk/wiki/Hypochl...
Taking magnesium is good. We hypos need it. For as long as you can stand upright, you won’t – by definition – be magnesium insufficient…. But you might be deficient and again – you need to opt for ‘optimal’ levels, which means very close to the upper norm….
If you are oestrogen dominant, then my best advice would be to use organic bio-identical progesterone cream according to the instructions – It has made the world of difference to me… but I only recommend this particular one, which I know not to carry any cancer risk. There might be other good bio-identical ones, but I stick with this one: elan-organics.co.uk
As for gluten – I would stop that immediately after the endoscopy…. If you have to wait several weeks/month for your appointment, then I would stop gluten now and re-introduce it about 2 weeks before the appointment. I don’t quite get the wisdom of making your gut inflamed with gluten, just so that the results of the endoscopy will confirm that there is inflammation – but there you are…. doctors know what they are doing, one hopes ;o)
You will be a very, very lucky girl indeed if you can persuade your doctor to prescribe you NDT… but no harm in trying ;o)
I just want to say a huge thank you too you, i really appreciate your help. I've just copied my recent bloods from another post for you to have a look at.
I have tested positive for pernicious anaemia but because my levels where "within range" (317) I was refused the loading dose and only had 5 weekly injections after a battle....I'm now left to self Medicate with sublingual lozenges and get an injection every 12 weeks.
My most recent blood work:
Ferritin 37.2 (10-322)
Folic 6.8 (2-20)
Potassium 4.1 (3.7-4.8)
Sodium 140 (136-145)
Calcium 2.49 (2.1-2.5)
Corr calcium 2.39 (2.1-2.5)
Phosphorous 1.04 (0.87-1.45)
I have the print outs in front of me if you need more, I'm not sure of it all. I have high level of albumin 49.3 (34-48) and bilirubin 20 (1.7-18.7)...not too sure if that means anything. I think the sex hormones are FSH 3.1 LH 9.7 Oestradiol 642.8 Progest 31 all of which have lots if different ranges under different headings. Prolactin is also in that "group" and that's 374.8 (59-619).
Thank you for the info on the progesterone cream I'll have a look for the one you suggested. I'll be sure too get vitamin d tomorrow too...as for the gluten thing, I'm just going to give it up. Either way, I'm going to give it up so I don't see the point in putting myself through this for another test.
As for the ndt I know I'm hoping against hope but it's worth a shot lol I've only read of one GP in Ireland prescribing it so I may be peeing in the wind but if you don't ask you won't get xxx
Q: I'm just wondering would a pituitary tumour show up on an MRI???? I have just had one recently, and there was no mention of that. Thanks for the link ill have a look now =)
I am not Rod, but.....
Looking at your TFT results it is highly unlikely that you have a pit tumour. Pit tumours usually signify with low, normal or suppressed TSH - yours is high.
The exception to that would be a TSH-oma (a TSH producing pit tumour, which acts independently from the pituitary gland) - I have come across ONE such a case 18 months ago (a lady in Scotland), but that was an exceptional stroke of "luck".... There are only a handful of reported cases around the world, let alone the UK, which has (now) 2 of them. Italy has 1, the USA 2, I think.... just to demonstrate its rarity.
Pituitary tumours a very, very small - a few millimetres to about 2 cm for the big ones.... but yes, they should show up in an MRI of the brain, although the best chance to detect one is in an MRI with contrast dye.
The reason why you'd get a low TSH reading with an ordinary pit tumour is because the tumour presses onto the anterior wall of the pit gland where TSH (among other trophic hormones) is produced, which can result into a reduced TSH output. Depending on the size and exact location of the tumour, ACTH, growth hormone, prolactin and other trophic sex hormone production can also be affected.
If you know people who actually have extremely rare disorders, it somehow reduces the difficulty of thinking that someone else might also have a rare disorder.
I do agree that TSHomas are rare. Very rare. These two links confirm they are rare - though one suggests considerably more than two should exist in the USA.
If you know people who actually have extremely rare disorders, it somehow reduces the difficulty of thinking that someone else might also have a rare disorder.
I do agree that TSHomas are rare. Very rare. These two links confirm they are rare - though one suggests considerably more than two should exist in the USA.
Apologies for the late reply, I don’t know when you posted, but I had not spotted your mail above and only received auto-notification about it last night. I’m struggling with the concept and lay-out of this forum – all very confusing …. Sorry ;o)
The two links you posted refer to TSH-omas in conjunction with HyPERthyroidism. I know they too are rare, although a few hundred cases worldwide are recorded every year, which - in a global sense - is still extremely rare. But rarity was not the reason why I dismissed the idea of a TSH-oma in Hazel's case.
I was not referring to a TSH-oma in conjunction with Hyperthyroidism, and perhaps I should have made this more clear in my post, but didn’t elaborate in order not to confuse Hazel even more. I am as sure as I can be that she does not suffer from this even rarer condition - an autonomous TSH-oma in conjunction with HyPOthyroidism.
The following link is not the person I was referring to in my mail to Hazel, but she is one of the now 3 cases in the UK (2 of them in Scotland – from memory I think the third one was in Birmingham or Oxford?) . Just to demonstrate that such phenomenon really exist - ncbi.nlm.nih.gov/pubmed/115... - If you research information about this condition yourself, you will barely find any references relating to it. I really scoured the net at the time, but was not very successful. If you find any more, would you please notify me privately? I would be very interested to hear.
But back to Hazel’s case…. Hazel had initially been diagnosed with hypothyroid autoimmune thyroiditis (Hashimoto’s) with a TSH of >150 and an FT4 of 2 and just under 1000 TPO autoantibodies after the birth of her child. This clearly was at the time a case of autoimmune hypo- and not hyperthyroidism and I believe it still is. Eltroxin has brought her TSH down to above 5, but her FT’s are now elevated , making her feel hyper and hypo at the same time. This indicates to me that the T3 is – for whatever reason – not entering her cells. There is an outside chance that Hazel might have in addition to positive TPO also positive TSI or TRAB (which would be diagnostic for Graves), and that needs to be checked. I don’t suspect that she has, but it is a possibility that needs investigating. My guess would be that because of her very low iron status and her PA and weak adrenal function the cell receptors are blunted and not able to take up the T3. The SST result – when Hazel gets it – should throw a bit more light on her adrenal situation. I just hope that Hazel will find a competent endo who understands what is going on and will work with her rather than patronize her and tell her it’s all in her head….
With kind regards,
Tina
Hi Hazel Jane
We meet again. I think you've got Hashimotos disease as evidenced by the high antibodies and as per what I said on previous thread you are going to be all over the place. Did you get chance to read Colin Dayan's paper on how to interpret thyroid results?
Your results are consistent with chronic autoimmune thyroiditis where the antibodies are interfering with the assay. I'm not sure I agree you are pooling and it's not getting into your cells or the other stuff you've been told - particularly regarding tumour, that's a bit alarmist in my view. I think it's just common or garden hashi's and you are also currently hyper which is consistent with your anxious and mood symptoms. There is plenty of information on Hashi's and mood which you can give to your doctor, I'm sure I posted you some of that already.
Maybe an idea not to start too many threads so all your info is in one place, as I think you already posted your iron panel etc and it's already evident you are anaemic etc - that way people can read all your info in one place. I agree going gluten free is a good idea.
As I said on the other thread I'd ask your GP to get your Graves antibodies as well as your hashis antibodies tested as you are having eye symptoms. You are also probably going to need some T3 containing medication .... read that link I sent you for STTM about Hashis that should give you some ideas but patients have worked out how to treat Hashi's and tamp down the autoimmune response.
Most importantly you need to see an Endo who will refer your for an ultrasound etc. Your GP is not qualified to manage this situation. Incidentally betablockers slow down the conversion of T4 to T3 and are useful if you are hyperthyroid but I'm not sure how helpful they are in a hashimoto's attack - they generally make a hypo situation worse. You need to tamp down the autoimmune response by removing gluten and healing leaky gut and candida etc like we discussed but the main way to control the attack is by suppressing your thyroid with hormones. As I said on the other thread I have less experience of this than someone like Tina3 but the STTM website will have lots of info.
Best wishes
Rebecca
PS like I said, I wouldn't treat the oestrogen dominance until you have your thyroid (and if nec adrenals) treated first. Adding progesterone before these other things are stable can create havoc. That's my personal experience and I asked Dr P too and he agreed, thyroid and adrenals first then sex hormones. Like I said on the other thread, sex hormones often right themselves once you have the thyroid right - Dr Peatfield's book explains this very well.
Thanks again for your wonderful reply...I'm sorry if I'm messing everything about by starting a new thread I had just wanted to see if anyone else had been through a similar circumstance and how they faired out. The "heading" of my previous post didn't really say what I'd wanted so I thought I'd ask again under a better "heading".
I did get to read through the link you sent on interpreting thyroid results, it was very informative so thank you. I think "panel 7" would be most like my situation, do you think???? I plan on orienting it and bringing it to my GP. I am also going to egg her to test for Graves antibodies if this test hasn't been done already. I had a very in depth eye test yesterday which included a photo of the back if my eye, and I was told there was no swelling etc which is a good sign with regards to Graves. But my eyes are certainly sore and "hot" so I will discuss this with my GP.
My GP can ultrasound my thyroid and did so herself about 2 months ago...she said there where no nodules but it was inflamed which explained the neck pain and "something in throat" feeling.
I'm too nervous to take beta blockers, it's only a 5mg dose which is really tiny but I'm still not comfortable taking it. I have quite low Bp and even though I have palps.
I'm hoping my GP will agree to give me som t3 meds. I'm on an information hunt so I can sound and feel confident when I'm putting this to her. Of late, my confidence has taken a hike. Anytime I try to say my piece I cry because I'm so emotional at the moment. It's soooo the opposite to the person I used to be. I was thinking of trying 5-htp to lighten my mood, have you ever heard of it before????
I'm going to invest in Dr. Peatfields book
Thank you,
Hazel xxxx
Hi there
It's OK, I know what it's like to be all over the place and scared, been there, got the t shirt :-). Like I said the other day I'm not an expert on treating hashis as I had my thryoid removed because I'd been sick with hashitoxicosis for so long and then it turned out I also had thyroid cancer so someone like Tina 3 would be better placed to advise you what to do in terms of tamping down the attack. It could be that adding more hormones to your current situation is not a wise idea, I don't know. That link to STTM about Hashi's should help you.
I still think you need to see a good endo, and the inflammation can be creating 70% of your symptoms regardless of your blood test results so everything you can do to bring down the inflammation would help. Gluten free the most important right now. chriskresser.com/three-reas...
In my opinion private or NHS is not the issue - plenty of crap endos have private practices, more important to see the RIGHT endo. Not sure if Thyroid UK have a list of good doctors or if someone can recommend someone, but that would be good.
Thank you Rebecca so much...I'm very scared at the minute but I'm finding great comfort in this group and all the knowledge everyone has. I'm in Ireland and we don't gave nhs out healthcare system is even more antiquated then yours lol but I'm on the hunt for a good endo. Sorry for asking you this but I've just got my period, my first in a couple of months, and I feel like I've been kicked all over. My body is aching from head to toe, headaches and what little energy I did have is gone. Is this normal with hashi's??????
Just up front… Girl Scout has a point – in future please keep to one thread with related questions, so all the history is in one place….
I’m afraid you’ll have to be assertive with your doctor – either you have PA or you don’t. By agreeing to treat you for PA previously, they have in effect agreed that you do suffer from it. PA is an autoimmune condition and there is no such thing as being ‘a touch autoimmune’ … would be like being a little bit pregnant. Try to get through to your doctor. There is nothing worse than a half-hearted approach to treatment and that goes for any kind of treatment. If you have been diagnosed with PA, then you should get the proper treatment for it. If all else fails – personally I am all for helping yourself. There is nothing stopping you from self-injecting. You shouldn’t have to, but you wouldn’t be the first….
Ferritin 37.2 (10-322)
Folic 6.8 (2-20)
Potassium 4.1 (3.7-4.8)
Sodium 140 (136-145)
Calcium 2.49 (2.1-2.5)
Corr calcium 2.39 (2.1-2.5)
Phosphorous 1.04 (0.87-1.45)
OK – from the above results it is clear that your ferritin is MUCH too low – you need to supplement iron in earnest. But remember to keep iron away from thyroid medication.
You already supplement folic acid – keep it up.
Your calcium looks ok, but then the body regulates calcium, so you will never be deficient…. unless your parathyroid function fails … but that’s not the case here.
Something that might re-assure you – your Sodium and Potassium figures are normal … and from that I can deduct that you are not suffering from primary Addison’s. You are not suffering from secondary Addison’s either (that would be pituitary malfunction, also called Hypopituitarism), because your TSH is too high for that…. so in all likelihood your SST result will come back “normal”…. Mind you – whilst a normal SST result might rule out Addison’s, it would not rule out adrenal fatigue – as this is not a test that deals with measuring fatigue – it only deals with damage to the adrenals (which you haven’t got - your electrolytes are normal) or Cushing's at the other end of the spectrum.
Your slightly elevated Albumin and Bilirubin shows that your liver is struggling… this could have many reasons, my guess would be gluten intolerance and lack of Vit D3 and – perhaps most of all - thyroid toxicity (caused by unused thyroid hormones that can’t enter the cells). Don’t know your diet, but avoid fast food and alcohol - without exception. You might want to take a course of Milk Thistle (health food shop) to help your liver detox…
The aim of the game and priority for you is to bring up your ferritin ASAP (be iv infusion or im injection would be quickest, but I doubt if your doc will oblige) and to optimize your B12 level by B12 injection. Both need to be at functional levels for your thyroid medication to work.
Sorry, but I can’t help with the interpretation of your sex hormones – I have no particular knowledge about those, but GirlScout is correct – Sex hormones often “right” themselves once the thyroid hormones are properly utilized. Still, read all the info on the “elan-organics” site and make a judgment call – you know your body best.
Oh - and I totally agree – you need a proper endo to look after you; your GP is not a thyroid specialist… However, if you can talk her round to either prescribing NDT, all the better. I gather you live in Ireland, which complicates things a bit, as I have a feeling you can’t just buy NDT on the internet due to EU regulations and all that….
Thanks again for your reply I'm very grateful...also apologies for the mess up with starting new threads. It wasn't intentional I had posted my previous thread about feeling a little depressed, so I just thought I was asking a new question. Anyways, I'm aware now that it's easier to keep everything together
Thank you for having a look at my blood work....I have been taking spatone the last few days but by the looks of things I may need something stronger???? Rebecca has recommended a few to me so I'll go buy one tomorrow, along with vitamin d3...thanks for the advice too on milk thistle, I have heard of it before, but never actually new what it was for...I'm learning by the minute lol
My GP WONT give me anymore b12 shots, I have tried and tried but to no avail. It was a battle to get the one a week for 5 weeks...I have tested positive for PA my father, aunt and uncle have it too. If I'm honest, I'm a wimp when it comes to self injecting. I've had some excellent advice from the lovely people on the pernicious anaemia Facebook page...for some the sublingual lozenges or patches work so I'm going to give them a chance before I decide to self inject.
It's wonderful to know I don't have Addison's or cushings so thank you for that, you'd think my GP would have told me that and stopped me worrying : /
Just wondering, I get these "rushes" of what feels like anxiety or adrenaline but I don't think it is that.....it's like I want to crawl out of my skin, I get really hot, flustered and unable to concentrate, it's so difficult to explain but I'm thinking if I say it to someone who knows what it is they would understand what I mean. Maybe it is anxiety, but I just feel it's something else. I am also constantly lightheaded I'm presuming the anaemia would be causing this???? The fear of passing out with my kids does make me nervous because sometimes I really do feel like I'm going to go.
Thanks as always for your wonderful advice, I really appreciate it,
H xxx
Hazel
You are hyPER - what you are describing at the bottom of your last message is thyrotoxicity, your T3 is out of range - I wonder how high, because believe me high T3 and you will feel totally NUTSO! I used to get it, horrible pounding heart, terrible anxiety, needing to go to the loo a lot (for number 2, or upset tum), sweaty, irritable, tearful, head racing etc, feeling like you are vibrating or shaking on the inside. Manic, talking too fast, breathless, and generally like invasion of the body snatchers!
If you imagine your thyroid is inflamed and under attack by millions of antibodies, so it's spitting out hormones left right and centre. The feedback loop (a bit like your thermostat and your central heating boiler) is on the blink, so your thermostat is up too high (TSH) even though your house is overheating, to stretch a metaphor. That thermostat will turn off (the TSH will drop) to try and get the out of control boiler (your thyroid) to cool down. But it's broken - the boiler is not responding to the message from the thermostat - your thyroid is inflamed and diseased, it has a mind of it's own.
All that inflammation and all those antibodies will make you feel like hell on wheels.
Where my knowledge falls down is what to do about medication in this situation - according to STTM you increase the dose with hashi's to control the attack but you can only do that in the presence of strong adrenals and good iron levels and we know your iron levels are bad. Also that course of action is dependent upon you ONLY having hashimoto's disease and not something worse. I don't know about straight Hashi's as like I said I had hashitoxicosis (both Graves and Hashis antibodies, a total and utter nightmare) and I needed anti-thyroid drugs and betablockers. Betablockers have their place, they really do.
If you feel really terrible then you could try skipping your meds for a day or two and just see if that helps but I'm guessing here - if it was me though, I'd be tempted to just try it. T4 has a half life of 8 days (so it takes more than a week for levels to halve in your body) so you would not go hypo in such a short space of time. But I confess I don't know, I was beyond using thyroid meds to tamp down autoimmune thyroiditis, mine was life and death.
But hyPER is not to be messed with. It's very serious. You need to see a doctor and you need a definitive diagnosis. If you have Graves antibodies also then we are in very different territory. And what's making me a bit worried is you have eye problems .... thyroidboards.com/hashitoxi...
And yes time of the month will be hideous. My cycle was all over the place - heavy, scanty, long cycle, short cycle, terrible PMT. All part of it sad to say.
What's your heart rate like? Are you sleeping? Any numbness or tingling in your hands or feet? Hungry all the time? Losing weight?
Take it easy, rest as much as you can (easy to say when you have kids I know)
Thanks again as always for your reply....I'm really all over the place this morning. Extremely heavy period, constant trips to the toilet, feel so jittery, can't stop crying and I don't know why, my mind is racing. I have all this energy inside my body yet I don't have the energy to do anything with it, I know that sounds crazy. I'm having aches and pains all over.....I just don't know what to do or where I am anymore and I'm so scared. I feel a bit dizzy and spaced out.....if I'm honest I feel like I'm loosing my mind. I know deep down it's all to do with my thyroid but I can't help but be scared.
My heart rate is a little all over the place, I find I have palpitations for no reason whatsoever. I also get them if I exert myself in any way. I'm sleeping but waking up absolutely sweating, my hair wet...broken sleep and I don't feel refreshed when I wake up. I'd happily stay in bed all day if I could but I wouldn't be able to sleep. Tried that yesterday and I hosed and turned for hours. I do get tingling in my hands and feet but not so much since starting b12. I get pains in my forearms and down my legs. I'm not hungry really to be honest because I'm so jittery inside it makes me nauseous. I have lost about 2 stone in the last few months but I put that down as the extra baby weight I'd gained whilst pregnant on my daughter. I never lost anything when I had get but all if a sudden it started falling off.
Rebecca, thank you so much for listening to me whinge I'm very grateful. My partner is amazing but it's hard to explain how I feel to someone who doesn't understand, even though he tries so hard. I feel very alone at the moment. How are you doing now??? Does this get better????
I owe you a lot Rebecca thanks so much for your help...I'll read the link you sent now.
Many thanks,
Hazel xxxx
Hiya
No worries. Hazel I'm concerned you are going through Hashitoxicosis. You are definitely HYPERthyroid - you have too much thyroid hormone in your body. Everything you describe is thyrotoxicity. It needs immediate medical treatment.
If you get concerned go to A&E but everything you are telling me is that you are toxic. Hyper is very dangerous - that tingling can be low calcium, I was so hyper that my body was using up calcium so fast my hands and feet went numb.
The bugger with Hashitoxicosis is you are sort of hypo and hyper at the same time, it's horribly confusing. You are NOT losing your mind, you brain is being poisoned by too much T3 - it's horrific. The sweating and palps are serious signs, T3 toxicity puts a great deal of strain on your heart.
Can you get to see a doctor today? You need an urgent endo referral.
Personally I wouldn't put any more hormones in until you've had some expert advice as you already have too many hormones in your body. Betablockers slow down the conversion of T4 to T3 (T4 is the Eltroxin, T3 is the stuff that is making you jibber ....) so if it's safe to take them, I'd take them for now.
Everything you are telling me points to hyperthyroidism - it might be transient or it might be Graves or Hashitoxicosis. We need to find out which. But you can't stay hyper like this, it's incredibly dangerous.
The soonest appointment I could get with my GP is first thing in the morning....I have also phoned my endo and spoke to his secretary regarding my "urgent" referral sent 3 weeks ago. She said she would speak with him and be in touch. I took my eltroxin this morning before reading your message.
I feel so let down, I cannot believe a doctor would leave me, or anyone,like this. I'm finding it so hard to mind my children. Is there any way I can flush this eltroxin out of my system quicker.???? I know that's probably a silly question but I'm clutching at straws here.
I was told to take just 1/2 a beta blocker tablet so I'll try split one now they're quite tiny. Sorry for yet another question, but just so I don't sound completely stupid tomorrow what exactly should I as my GP tomorrow???? Please don't think for one minute that I'm not reading what's be written here I am, my mind is just a little muddled at the minute and I dont know where I'm at. I just want to write it all down now and have it ready to go.
I really appreciate your advice thanks you...and if I went to my A&E dept again I think they'd lock me up. They just send me home and tell me I'm anxious and im fine I'm so angry with he whole system
Hazel xxx
Hazel
I'm hoping someone else will chime in here too. But in my view your doctor needs to establish what is wrong with you - do you have Graves disease, have they tested those antibodies? Or is this hashitoxicosis? What medication should you be on? All of your symptoms (including your blood tests) say you are HYPERthyroid and your ultrasound shows you have an inflamed thyroid, your antibodies are massively over range. High TPO antibodies are common with Hashis but you also get them with Graves (along with Trab and TSI antibodies).
So its a question of immediate management - what to do right now, in terms of your meds (if you are hyper it seems that putting more meds in is a bad idea to me at least but like I say, I was beyond using thryoid meds for hashis so I don't know, from what I've read your low iron status complicates that plan) and longer term in terms of management - do you need antithyroid drugs like carbimazole to help bring you under control (that needs to be sorted by an endo)?
But longer term management depends on a definitive diagnosis - you'd manage hashi's differently to how you'd manage Graves or Hashitoxicosis. You've been told it's hashi's - which is characterised by ups and downs - and you are most definitely UP at the moment, but is that all it is?
Your doctor needs to know about the bowel movements, sweating, anxiety, palps, weight loss, racing head, tingling etc. You are HYPERthyroid. And A&E are incorrect, anxiety is a symptom of HYPER - and dismissing you is not only patronising it's dangerous.
My partner promised to sit down with me tonight and make a list if everything both yourself and Tina3 have advised.
I'm hoping that me turning up prepared etc will prevent her fobbing me off. I've been fobbed off a lot in the last year as I'm sure many others on here have. It's so destructive on your mental state and confidence when you practically bare your soul to a person and they laugh it off continuously. I've been to A&E and the medical assessment unit so many times....last visit they got me a psych nurse who agreed with ME and said I just need the right medication.
I'm thinking I'm going to tell my GP I want to come off eltroxin, it has never worked for me from day one and she knows this. I'm going to ask her about ndt and if she won't prescribe it that I'll have to find a GP that will. I will also ask about graves and if it gas been tested for, if not I will get that done ASAP.
I am feeling a little more hopeful even though I feel dreadful. I know I sound like a child but I just couldn't bare another Christmas like this, so I'm putting my boxing gloves on and I'm ready to fight.
I cannot thank you enough for all your help I truly mean that.
Q: Just wondering, I get these "rushes" of what feels like anxiety or adrenaline but I don't think it is that.....it's like I want to crawl out of my skin, I get really hot, flustered and unable to concentrate, it's so difficult to explain but I'm thinking if I say it to someone who knows what it is they would understand what I mean. Maybe it is anxiety, but I just feel it's something else. I am also constantly lightheaded I'm presuming the anaemia would be causing this???? The fear of passing out with my kids does make me nervous because sometimes I really do feel like I'm going to go.
Hello H,
GirlScout has beaten me to it - I was going to say something very similar this morning….
What you describe above is very likely due to thyroid toxicity. You are taking T4, and by the looks of it your body converts that ok into T3… but because this T3 cannot get into your cells, it - and the T4 you keep putting into your system every day - circulate around in your bloodstream with nowhere to go. Those thyroid hormones building up in your bloodstream now make you thyrotoxic = hyPERthyroid. But you are essentially hyPOthyroid – so this state you are in at the moment is called “Hashitoxicosis” – hypo and hyper at the same time … Everything is in turmoil – your autoantibodies are causing havoc attacking thyroid tissue and your gut (because of gluten), your thyroid hormones have nowhere to go, the liver is working overtime to get rid of those excessive (now toxic) thyroid hormones – and you feel like something you scrape off your shoes….
Those “rushes” that you describe above are very likely adrenaline rushes, caused basically by your overall hypothyroid status – Dr Ray Peat explains what is happening probably best (taken from and interview with Mary Shomon in March 2012):
(quote) Mary Shomon: Many people describe how they are clinically hypothyroid, with elevated TSH levels, but have extremely high pulse rates. Do you have any thoughts as to what might be going on in that situation?
Dr. Ray Peat: In hypothyroidism, thyrotropin-release hormone (TRH) is usually increased, increasing release of TSH. TRH itself can cause tachycardia, "palpitations," high blood pressure, stasis of the intestine, increase of pressure in the eye, and hyperventilation with alkalosis. It can increase the release of norepinephrine, but in itself it acts very much like adrenalin. TRH stimulates prolactin release, and this can interfere with progesterone synthesis, which in itself affects heart function.
I consider even the lowest TSH within the "normal range" to be consistent with hypothyroidism; in good health, very little TSH is needed. When the thyroid function is low, the body often compensates by over-producing adrenalin. The daily production of adrenalin is sometimes 30 or 40 times higher than normal in hypothyroidism. The adrenalin tends to sustain blood sugar in spite of the metabolic inefficiency of hypothyroidism, and it can help to maintain core body temperature by causing vasoconstriction in the skin, but it also disturbs the sleep and accelerates the heart. During the night, cycles of rising adrenalin can cause nightmares, wakefulness, worry, and a pounding heart. Occasionally, a person who has chronically had a heart rate of 150 beats per minute or higher, will have a much lower heart rate after using a thyroid supplement for a few days. If your temperature or heart rate is lower after breakfast than before, it's likely that they were raised as a result of the nocturnal increase of adrenalin and cortisol caused by hypothyroidism. (unquote)
Please realize that I am not a doctor – so I cannot advise you what to do… but if I were in your shoes right now, this is what I would do:
I would stop Eltroxin for about 8-10 days. As no thyroid hormone is going into your cells at the moment there is no point in adding to the toxicity. Don’t worry, it is not dangerous to stop your thyroid meds for that time. Essentially you are very hypothyroid and generally speaking you DO need thyroid medication … but in order for your body to utilize thyroid hormone, the body first needs some conditioning….
First of all – take some adrenal and thyroid support :
Vit C – start with 1000 mg per day, slowly increase to bowel tolerance (I like Lamberts "time released" vit C)
B complex - i.e. Lamberts do a B 50 complex , which is very good
and you need Selenium ~ 200 iu per day - if you take a good mineral complex (which might be a good idea) then that might contain it – otherwise take it separately
Lamberts also do a good Mega Mineral Complex
Co-Q 10 - at least 100 mg per day, better 200 mg if you can afford it (it’s expensive – I buy mine from the US – it’s cheaper)
Extra Magnesium Citrate (look at Lamberts “Magasorb”- it’s easy on the intestines)
All of the above you’d have to gently introduce … if anything gives you bad side effects, don’t take it – except Vit C and Selenium are vital (but they are not likely to give you side effects)….
Iron – as much as your body can take…(take iron together with Vit C to avoid constipation)
B12 preferably injections, but at least 1000 iu – 2000 iu sublingually every day – or you could try those patches – have no experience with them though….
A course of Milk Thistle (usually 6-8 weeks) to help the liver detox.
Switch to gluten-free.
I all likelihood you will at first feel a bit better once you’ve stopped the Eltroxin. But after about 8 days or so you might start feeling worse again…. this is the time to re-start thyroid medication … preferably ½ grain of NDT, if you can get it, but if not, I would recommence with 50 mcg T4 and then take it from there. With a bit of luck the vitamins and minerals will have kicked in. Iron will take longer to build up in the body, but every little helps….
Also investigate all the other points I had mentioned before…. I believe that weak adrenals, low iron and low B12 are your main culprits, but there could be more….
Even though doctors are not usually inclined to look favourably upon patients taking supplements, I would mention what you are doing. It is always best to get the doctor on your side if possible.
These rushes that I get really do feel like adrenaline...thank you for the quote you pasted, it's very interesting!!! And also make me feel a little less crazy.
As for vitamins. I've started taking vit c 1000mg, magnesium 500mg, selenium 100iu (but will up that to 200iu today), b-complex, b12 sublingual spray 4 x 1200iu sprats over day until my 5000iu lozenges arrive. Co-Q 10 is new to me so I will look into that....I'm unsure of exactly how much iron I should take so I'd appreciate your help with that. Also, if you recommend a certain brand I could buy that would be great. I was taking spa tone and my better half hit me so e tablets the other day but I don't think they're great.
I've cut out gluten starting today fingers crossed it goes as well as it did before.
I'm getting my list together and plan on not leaving until I get dome answers tomorrow...I need my life back
Can't begin to thank you for everything it means the world
Co-Q10 is an antioxidant - it plays a vital role , so would be good to get some. As I said, it's pricey in the long run - I get my 200 mg from Vitacost US ... takes 4 weeks to arrive, but is good stuff and sooo much cheaper than here.
I am hoping that Rebecca will advise you on iron supplements - I have no experience with taking iron - she has ;o)
Best of luck with it all, Hazel, I hope you'll feel better soon and that you'll find a good endo who will work with you.
Thank you Tina3, so very much. I'll be sure to keep you posted. I am so grateful for everything xxx
Hazel
Good luck, let's just see what your doctor says but I agree that you've got to take your health into your own hands. I'd say the Graves thing is an outside chance, but you might have TSI antibodies which people with hashitoxicosis do have and that would explain why you are feeling especially rotten. You'd normally see a zero TSH with Graves and you don't have that.
If you can take your husband to the appointment I would do that - helps to have a witness. Also take a notebook and pen - that keeps them on their toes! Write your questions down.
And low iron is correlated with thyroid problems - I use a mix of products. I buy an American iron on Ebay called Blue Bonnet ebay.co.uk/itm/Bluebonnet-N...? _trksid=p2054897.l4276 and I also buy a polypeptide heme iron from the States called Proferrin ES amazon.com/Proferrin-ES-Iro....
Both fixed my iron really quickly but I mix it up - so spatone as well, Floradix. But all of these are non constipating, But I had a really hard time with iron - I had to have an infusion as I lose it really fast and don't seem to absorb it through my gut very well.
Let us know how you get on but as we've said all along, the key is going to be finding an endo or knowledgeable doctor to work with you.
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I'm so angry with he whole system
high tsh, in range ft4
TSH low, ft3 low, ft4 high... Still feel awful!
TSH, FT3 & FT4 results
High FT3 with \"normal\" TSH/FT4
Diarrhoea, high ft3 low ft4.
