Hi I'm new to the group and was just wondering if A) anyone suffers from anxiety related disorders ie. panic disorder, agoraphobia?

[Shazy-B]

B) is it common to be taking 100mcg of Levothyroxine and still be symptomatic and feeling lousy

Any advice would be grately appreciated x

[Hidden]

You may benefit from a different kind of medicine such as T3 or Armour thyroid or perhaps you're just not on enough levothyroxine. Do you have any hypothyroid symptoms or are you otherwise feeling well? I've always suffered with anxiety too but am now generally able to keep it under control...

Is your GP supportive? are you seeing an endo? what are your latest blood results?

[Shazy-B in reply to Hidden]

Thanks for replying abcba Armour isn't lisenced in the UK though is it? I had this argument with my GP over 10 years ago when I was diagnosed and prescribed Levothyroxine. I have put up and plodded on for years but now I have developed this Anxiety condition I really am at the end of my tether with it all. My GP never tells me what my levels are just that they are 'normal' it's so frustrating.

[Shazy-B in reply to Hidden]

Sorry abcba I didn't see the second half of your reply. Yes I am symptomatic extreme lethargy ( never feel rested and feel like I could sleep for a week) hair loss (I have lost most of my eyebrows) very dry itchy skin including dry eczema type patches, migraines, weight gain.

I did see an endo when I was initially diagnosed 10 years ago but never since.

[Clarebear]

I suffer with anxiety when under-medicated and suffered with it really badly before diagnosis. I can be relaxing in bed about to drop off to sleep and I suddenly get a rush of adrenaline which I can actually feel being released. I am then really anxious and unable to sleep. This can go on for hours on end Before diagnosis I also started suffering from agoraphobia. I can remember being at the school summer fair and I just had to go home and get away from everyone - I had never experienced this before, as I am usually a very sociable person. I think it was connected with the anxiety and hypothyroidism.

I am now on Armour thyroid and am much better, although am struggling to get the dose exactly right. You are right that it is unlicenced in the UK, but doctors are able to prescribe it on a "named patient basis". My endo prescribed it for me to start with very reluctantly, but he has been amazed at how much better I am. My GP is now prescribing it on the NHS - I think I'm very lucky.

I would suggest getting in touch with your GP surgery and requesting a printout of all of your test results - they are yours and they have to give them to you, although some surgeries do make a small charge. Once you have go hold of them then please post them on here and you should get lots of help/feedback/suggestions

Anxiety is awful to live with - really hope that you can get some relief soon. xxx

[Shazy-B in reply to Clarebear]

Thank you so much Clarebear, I will definitely go to my GP this week. No one I've ever spoken to about my anxiety can understand the feelings and sensations it causes....you describe it perfectly and exactly what I get. That surge of adrenaline that runs through my body is terrifying, I can be sitting watching TV or reading a book and it just happens! Thanks again, I'll put my results on here as soon as I get them xxx

[Clarebear in reply to Shazy-B]

It seems as though there is a complex link between thyroid and adrenal glands. These adrenaline rushes only happen when I don't have enough free T3 - sounds to me like you may well benefit from taking some direct T3 too xx

[Hidden]

I have felt like this before. When I crash I have hashimos and about every 3 months I have a few weeks where I hit rock bottom. I become so forgetful and anxious. I find baked potatoes I have left in the Aga I don't know for how long and they are stones. At this time I can be driving somewhere and completely forget where I am going and this huge panic comes over me. I have also had it queuing in a supermarket. I tried explaining it to my GP who said to me "I don't want to give you antibiotics but I will give you them if you feel you need them". I declined. Just be aware they may try to palm you off with antidepressants."

[Hidden]

I developed horrible anxiety on thyroxine and when my levels are too low I just want to stay at home and hide. I don't know if that's agoraphobia though?! Also, I have heard that the average dose of thyroxine if 125 - 150mcg so you could maybe still raise it a little bit to see if it makes a difference before trying something else? xx

[puncturedbicycle in reply to Hidden]

DiamondFire, this sounds like agoraphobia to me, or at least it is similar to what I experience. I don't have anxiety attacks, just an extreme reluctance to leave the house with avoidance/anxiety if I absolutely have to go out. It took years to understand this was why I was late for everything for much of my life.

[Hidden in reply to puncturedbicycle]

Thanks puncturedbicycle, I never realised that that's what it was! I just thought I had lost confidence and felt like everything was too much for me and couldn't cope. Nice to know that there is a name for it funny how it went away when my thyroxine went up though... ! This disease is a conundrum! xx

[shaws Administrator]

Some additional problems to hypothyroid patients can be the result of the GP keeping the bloods within 'normal' range. Many of us require a very low or even suppressed TSH and a lot of GP's believe this is wrong. This is a link to an archived site (Dr Lowe died last year) but there is a lot of information which is helpful.

web.archive.org/web/2010103...

If you take your levo in the morning, if you are having a blood test do not take it till afterwards and also have the test as early as possible. You are entitled to a copy of your blood tests, with the ranges, and you can post them for members to comment.

You will be reassured that what you are experiencing is not uncommon but we need optimum medication and if you wish your GP to refer you to an endocrinologist, if you email [e-mail] she has a list of NHS Endos/private doctors one of whom may be near you.

[Shazy-B]

Thank you Shaws I will take a look at the link and I plan to see my GP this week. I have just been reading that the contraceptive pill can interfere with 'ranges' appearing normal. Although I don not take the contraceptive pill I do take HRT every day as I had a full hysterectomy approximately 2 years before I was diagnosed with hypothyroidism. Does anyone know if the same issue with ranges can be affected by taking this. Can HRT disguise your true levels?

[Hidden in reply to Shazy-B]

I have no medical evidence for saying this, but I do think there can be a link between the thyroid and the menopause/HRT. If you're taking a chemical replacement hormone for the latter commonsense would suggest that it is impinging in SOME way on the chemical replacement hormone you're taking to supplement what your thyroid should be making. Certainly you should bring that up when you see the doctor.

[Moggie]

Has your doctor ever tested your Vitd, B12, Iron, Ferritin and folates as these are often very low in thyroid patients and your thyroid meds will be struggling to work properly if they are.

I found that addressing very low ferritin levels has help my adrenals no end and I no longer get the level of anxiety I used to. I have also had an erratic heart beat for over a year and since taking iron this has also lessened as I feel my heart problems were adrenal and not thyroid related - although if my GP and endo had their way I would now be in beta blockers and warfarin.

If you have had any of these vitamins tested then post the results in here for people to comment, as what the NHS will say are o.k. are far from o.k. for a thyroid sufferer. If you haven't had them tested I would ask your GP to do so.

Moggie x

[Shazy-B]

Thanks Moggie I have never had any of them tested. I was put on a slow release propranolol 18 month ago for my anxiety but had a really bad reaction to them an am now classed as allergic to them. I ended up in hospital with a really severe anxiety attack which they initially thought was a heart attack! Thanks for the advice I'm seeing my GP on Thursday xxx

[Moggie in reply to Shazy-B]

Dont be suprised if you have to fight for them as budget restritions means that some GP's are refusing to test vitamins but they are really important as far as your thyroid meds working properly goes so if your GP does agree to test them all that would be great but if he refuses then push for the vitd and ferritin (iron stored in your body) first and then push for the B12.

Good luck with it and let us know how you get on wont you.

Moggie x

[marmaris in reply to Shazy-B]

Hello Bellaboo I can relate to all your problems, and like yourself I am taking HRT. Recently stopped Levo 100mcgs and started taking T3 only seemed ok at first then my tsh soared to 20 from 0.07 suppressed. Now back on Levo and taking small dosage of T3 ie 12.5. I am constantly bloated, anxious and very depressed and feel I am getting nowhere. Results back down to 0.21 tsh but I know this is not the b all and end all. Several checks done also B12 etc etc all normal although just found out Vit D low and had retested and awaiting results. I just wish I had a solution to so many of us suffering.

[marmaris in reply to marmaris]

Meant to say TSH soared to 29

[happyjackandjoan in reply to Shazy-B]

I no how you feel -2 teacher forced me down nurse drew blood

[puncturedbicycle]

Yes, I also am agoraphobic as is my mum. There are anxiety disorders and drug/alcohol problems in my family which I think supports the evidence that there are genetic links as well as environmental influences. I don't actually suffer from anxiety attacks. I've had a handful in my life but they haven't been a factor in my agoraphobia. I do feel like my thyroid problems have some influence on my anxiety but I haven't yet been able to crack it even though at present I feel pretty well-medicated thyroid-wise.

After many years of not doing anything about this I've been thinking recently if there's anything I can do to help myself. In theory I'd love to be out getting a bit of exercise but at the moment nothing will shift me.

Sorry you're feeling so unwell. That is not a very high dose of levo and you may well benefit from a bit more. Would be good to get your blood test results and post here so you could get an idea if there's room to adjust your dosage. You're entitled to them.

[puncturedbicycle]

I'll leave my reply below, but I wanted to point out that when I came back to this thread today - although I could have sworn I had already replied - my original reply (above) didn't appear, so I replied again (below).

I'm not just pelting this thread with random replies, honest!

Bellaboo1 I suffer with agoraphobia, though I don't have panic attacks (or I should say I've had a handful of them but not concurrent with my agoraphobia). I'd be interested in knowing more about the connection with thyroid problems. I wonder if we could do a survey here.

My only advice would be to ensure you're really on top of your supplements and meds - get your test results with ranges from your doctor and try getting your tsh under 1. It isn't the solution to everything but lots of people only feel better once their tsh is under 1 and their t3 and t4 are high in the range. Have you managed to get your doc to do the tests recommended by TUK?

I didn't feel much better on t4 - even when all the numbers were good - until I added in some t3, but I seem to fluctuate so much that no 'good' dose remains good for long, so my problems with agoraphobia continue.

[happyjackandjoan]

keep do your best my friend that all the lord ask