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Could this be Thyroid? If not, What is Wrong with Meeeeee!!

(33 Posts)
Earthymama Wed 03-Jul-13 10:52:18

Hi I am at the end of my tether, I said to DP this morning that I cannot face living like this any longer.
I have long-term arthritis, psoriasis, long-term sinusitis. Arthritis and sinusitis make me feel very ill on occasion. I could constantly be on antibiotics as sinuses/ upper chest is always productive(sorry, TMI) Fighting the pain is always part if my life. I take meds and supplements, would do anything to sort my health.

I eat healthily and am reasonably active though I don't exercise as such.

I work with young children, it's tiring and demanding and quite isolating, though I have an active social life and a fabulous family.

I get SO tired, I pick up every virus from the children, I find I rocket between being ok, I work, cook , garden, socialise, sleep 7 hours.
Then I collapse, can't do anything but function, work, eat a little then go to bed, sleep around the clock, work, eat a little then go to bed, sleep around the clock, and so on.

I went to the doctors last week and they did blood tests, which have come back clear. I should be glad but I am devastated. What the hell is wrong with me? I did some reading and realise I have all these symptoms but blood tests say no.

Symptoms of underactive thyroid can include:

extreme tiredness
weight gain, but with a poor appetite
feeling the cold easily
dry and/or pale skin
coarse, thinning hair and brittle nails
weak and sore muscles
puffy eyes
memory loss and poor concentration
heavy, irregular or prolonged menstrual periods, if you’re a woman
tingling in your hands and arms
poor sex drive
slow heart rate

If you haven't passed out through boredom, has any one got any ideas or experience or, hopefully, advice?

RawCoconutMacaroon Sat 19-Oct-13 18:55:58

Enjoy Your holiday.

Mmmmm you are veggie? That complicates matters somewhat if trying to avoid inflammatory foods... But not impossible.

The nut roast Would have had gluten? Tomato, and possibly chilli? (Nightshades).

I'd be tempted to self cater as much as possible. We tend to go out for a coffee, or a drink but cook ourselves because its easier and safer... But it takes a while to get into that mentality because we all like to treat ourselves on holiday, I do resent always having to take charge of meals but, it's that, or feel ill for several days sad.

Earthymama Sat 19-Oct-13 18:30:37

RawCoco, (do I guess from the name that you can eat those?!)wink
I should have said that the tests will be done when I get back from the trip of a lifetime to San Francisco!!

I leave tomorrow and am so excited and also a bit apprehensive about food.

On Thursday I ate out, had nut roast with pepper sauce and within hours the lethargy returned, brain fog, odd dragging pain in lower back and the Itch from hell. I feel better today but am so worried.

We are real food lovers and cooks and have so enjoyed researching veggie cafes and restaurants and I don't want to rain on DP's parade.

Thanks for your advice I will take it on board on my return and will surreptitiously try to while I am away.

RawCoconutMacaroon Fri 18-Oct-13 08:40:25

I read your initial post and was thinking you have many autoimmune symptoms going on, not just the possible thyroid.

Antibodies to gliadin (in gluten), start to drop after about 6 weeks of a totally gluten free diet, just cutting out bread and cake won't make you gluten free, it is in almost everything you buy that's commercially made... Don't feel you have to eat piles of wheat at every meal until the test, one meal a day with a normal portion of pasta or bread will be enough, as you will be getting lots of "accidental" exposure from other foods.

If the tests are positive, you have your answer, if they are negative, don't assume it it NOT the grains, there are lots if false negatives because of the tests they use, and the range of "normal".

So after testing, even if the test is negative, it may be worth doing a TOTAL exclusion diet on all grains (including rice and maize/corn) for a month or so. You can then add back rice (least likely to be a problem), and maize (about 10% of wheat intolerant people also react to maize/corn flour, not great as they put it in a lot of gluten free foods!). If you are ok with those after a few more weeks, you could add back other grains to see what happens!

What happened to me, was I reacted really badly to anything with gluten in (massive gut pain within mins and then other symptoms for a couple if days) and also to maize/corn flour. Rice I can tolerate only in small amounts, and nightshades (I realised later) which are potato, chilli and sweet peppers and tomato, I can eat but with caution (not too often, not too much). I had ALL of the symptoms you have, and more. Now I don't grin.

If you google something like whole30 or grain free exclusion diet, you will get plenty of info. Doing a strict exclusion for a few weeks will do you no harm at all, and it might give you the info you need to be well.

Good luck smile!

Earthymama Fri 18-Oct-13 07:49:57

Just looked at the dates on the first part of the thread; if asked I thought I started it in late August! It was much earlier.
Last year I found myself 'missing' chinks of time, when I could not remember having done anything. I am determined to never, ever be like that again.

Thanks again from a sleepy, but in a good way -as just woken up- Earthy x

Earthymama Fri 18-Oct-13 07:44:52

Itshot, my friend is also lactose intolerant but I couldn't face cutting out both at once but I haven't had my usual ice cream binges lately, just not fancied it!

Maybe I am growing up at last!!

So should I eat some bread etc on the days before the tests, do you think? I guess it makes sense but I will be scared

itshotintexas Fri 18-Oct-13 02:11:31

Hi Earthy, after reading your OP, i was going to suggest gluten or coeliac disease. If they are going to test you for coeliac disease, do not cut out all gluten, or it will not be measureable in a blood test or biopsy. And then they will tell you that you are not gluten intolerant/coeliac. I am both coeliac and hypothyroid - both autoimmune disease and linked. The other thing with gluten intolerance can also be a lactose intolerance. Sounds like you are on the right track. good luck

Earthymama Fri 18-Oct-13 01:23:47

Hi I have come back to update you all after your support and kindness when I was so, so down at heart.

I decided nearly 3 weeks ago that I would try to cut bread out of my diet, and other things like cake and pastries. I was craving brooche, croissants and pain au cho and having lots of toast.

I feel as though someone has flicked a switch in my brain and my body!!
I no longer want to sleep constantly, I can concentrate on tho gs, cook a meal, play the fool well live normally.

I still have pain from arthritis and sinuses but the lifting of the brain fog is amazing.
Sadly I can see what a mess the house is and how much I haven't done while feeling so ill so the list of tasks for DP and I is getting longer.

I have spoken to my GP and she is going to do some tests in the coming weeks to ascertain if I am gluten intolerant or .. Well I not sure exactly what but at least she was supportive..

I want to thank you all again. This may not be a miracle cure but it is such a relief to feel like myself again.
Blessings Earthy

RubySparks Wed 10-Jul-13 12:26:55

Also ask for blood test for coeliac disease - similar symptoms to IBS and also leaves you very tired, it is in same autoimmune 'family' as hypothyroidism and some people also get a rash, often on elbows. Hope you get some answers soon, vit d is also worth testing for.

cocolepew Tue 09-Jul-13 17:15:51

I'm just back from the Drs i was convinced I had an under aciver thyroid but she says I'm not even borderline. I'm now being tested for Fibromyalgia and my b12 tested. Don't be fobbed of. My Dr is new to me and she says that she will work her way through everything until she gets some where.
I think I'm right in saying that the b12 is related to pernicious (sp) anaemia.
Good luck.

Oblomov Tue 09-Jul-13 16:13:34

You have my total sympathy.
I feel just the same as you. And keep being told that I am fine. But I am not fine, I feel terrible.

newestbridearound Tue 09-Jul-13 16:01:49

How long have you been feeling like this? Is fatigue one of your biggest symptoms? I'm wondering if tests for thyroid and anaemia etc are definitely in the normal range- and do see another gp for reassurance, and ask for copies of blood tests to see how close you are to the limits- whether it might be post viral fatigue or the onset of ME/CFS?

Mine started so gradually that I never realised how many symptoms I was actually having, as they would appear randomly and a few days later disappear. The fact that you say you are ok for a bit, then you basically collapse and are barely functioning before feeling a bit better again just makes me wonder. Brain fog is another huge symptom of it- not being able to remember things, feeling like you can't find the right words or you are looking at the world through a bubble. Like you I have a first class degree but I spend most of my time muddling things up or desperately needing to sleep!
If all the tests continue to come back negative I would definitely ask your gp about it, because if it does turn out to be that then the earlier you rest and pace the better.

Hopefully it won't be and it will be something treatable, but definitely worth bearing in mind. I hope you feel better soon- whatever it is I know how exhausting it is to be so exhausted and ill, and it isn't fun x

WouldBeHarrietVane Tue 09-Jul-13 14:01:54

Message withdrawn at poster's request.

Earthymama Tue 09-Jul-13 10:24:59

Thanks for your posts. I switched off yesterday, my preferred coping mechanism. Also I had eaten Salad for 3 days, having forgotten until gently reminded by DP that it sets my IBS off. That and the stress, I guess.

I was knocked for 6 yesterday; this GP has seen DP and I through think and thin!! Maybe I was the latest 50 odd year old, whining I am tired and he thought get a grip.

Anyway, I will go back to the GP who sent me for tests in the first instance and I will print out all the ideas you have given me.

Do you know what, though? I have a 1st class degree and yet the brain fog gets so bad that I struggle to do research etc.

I am part of two movements I care passionately about and I find myself sleeping when I find the time to study, to write. I can't look after my grandchildren as often as I want too. I have been socially active and I am paying the price, I look awful and my skin is playing up, as is my arthritis.

I will shut up now as I am making myself cry. blush

Here's hoping you all get some t ime relaxing today i th ywinebrewthanks,
I do SO appreciate your support and input.

WouldBeHarrietVane Mon 08-Jul-13 22:54:59

Message withdrawn at poster's request.

Willdoitinaminute Mon 08-Jul-13 22:48:32

sorry posted too soon
It is thought to be of an autoimmune origin.
When I start to feel like I can't be bothered with everything I have levels checked and usually see the levels have steadily been increasing. Fortunately for me the treatment is a few months of medication to bring the levels down.

Willdoitinaminute Mon 08-Jul-13 22:43:17

Ask your GP to check your prolactin levels. Increasing levels can cause many of your symptoms particularly fatigue ,loss of sex drive and period problems. Its not a test done routinely since prolactinomas are relatively uncommon. Mine was diagnosed after 5 years of problems gradually getting worse.

Gruntfuttocks Mon 08-Jul-13 22:21:42

Please go and see a different GP and get another view on all this. There IS a possible link between psoriasis and arthritis, and you have a strong family history of autoimmune disorders, so there is a pretty good chance that is what is going on in some form. Calling it a psychological problem is such a cop-out. If the GP can't sort you out, ask for a referral to a rheumatologist.

feedmewotsits Mon 08-Jul-13 22:17:31

Good luck - sending your positive thoughts...

Earthymama Mon 08-Jul-13 16:28:19

Excuse rubbish typos. Was blinded with tears!hmmwink

DP has mopped up and promised to help me research and look at alternate treatments.

We are Woo so not a big step.

Feed thank you will check out that site properly.

feedmewotsits Mon 08-Jul-13 10:53:05


Have you seen the same GP each time? Is it worth asking for a second opinion? Your results could be borderline for underactive thyroid or borderline for issues with iron levels and you might be experiencing symptoms without technically being below the 'normal' benchmarks.

You can also still have low iron levels without technically being anaemic. I'm not anaemic but I have had low ferritin - which is connected with levels of stored iron in the body's cells. This went completely undiagnosed by my GP despite numerous tests who kept telling me repeatedly 'you're not anaemic - your iron levels are fine.' It wasn't until I saw a private trichologist to find out why my hair was falling out that it was picked up. Basically the NHS considered any ferritin level measure between 15-150 normal (mine was 23) so wouldn't accept there was a problem - whereas I've since read various medical articles that say that patients can actually start experiencing symptoms when levels dip below 40. Hence the GP was insistent there was nothing wrong when really my system was running on empty. I had lots of similar symptoms to you.

Earthymama Mon 08-Jul-13 10:28:52

Well I had appt with GP.
I am sat in the park in tears.

He basically shrugged his shoulders and said
Definitely no thyroid problem
No anaemia
No link between psoriasis and arthritis
I am over weight. I explained I have a really poor appetite and cannot eat a full adult meal in a cafe but still font lose weight

Then said we might have to consider psychological reasons as I had a breakdown about 15 years ago.

I don't know what to go. Just accept I can work and sleep And that's my life.

VegPatchLurker Thu 04-Jul-13 07:32:52

Hi OP.

I also have psoriatic arthritis and 2 under 4.

Have a look at spoons theory. Works for me.

Best of luck.

digerd Thu 04-Jul-13 07:29:30

Good luck OP. Hope the Dr can get it sorted for you asap.

Earthymama Thu 04-Jul-13 01:27:46

I am sat here in tears after looking at the first site recommended.
It describes me to a tee!!
I need to take some time to read this and the other site properly so I can argue my case.
By the way, my mother had pernicious anaemia for many years.

Again, my thanks.

Earthymama Thu 04-Jul-13 01:20:46

Just wanted to thank you all
Good night thanksthanks

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