Any Ideas on what else this could be ??

[rockinhippy]

This is a long shot, but hoping someone here may have some experience of this, or medical knowledge that could help me be a bit more prepared before tackling my GP again :)

Where to start

I started with health problems some 9 year ago, when DD was about 6 months old - went on to get a Fibromyalgia & then when I carried on asking for answers as symptoms didn't all fit I then got M.E. tagged onto - persistant - 9yr long headache then got me "chronic persistent headacheyou don't say followed by chronic migraine diagnosis

More recently my GP was off on maternity leave & so I had a new GP for a while - turns out thanks to her being thorough - I also had H.Pylori infection - for YEARS, but never previously tested, despite it being obvious by symptoms - chronic migraine symptoms & neck pain etc are more likely down to a type of arthritis in my neck - but having read up on it, & seen Nuro, my symptoms fit perfectly, but waiting on MRI to confirm
Other bowel & low back problems are down to a birth injury, prolapse, rectocele & waiting on further test to determine what else is affected, but specialist thinks I have the lot & will need surgery

So in short, thanks to a new GP I am finally getting answers :)

but I've also spoken with my old GP in the past as regards the following, & been fobbed off as "you were on holiday, you relaxed" - I don't do relaxing holiday as I get bored & like to get out & explore, but she would never listen.

Problem is fluid retention - I've been for manual Lymphatic Drainage in the past & apart from it helping with a lot of my symptoms, the therapist said I had pretty bad Oedema - showed me a pressure test, which left a big dent in my leg for half hour or so - I saw my GP , she disagreed & only did the pressure test after my insistence & then so lightly it didn't work.

I'm just back from Holiday in Egypt again - the hot dry climate makes a MASSIVE difference to my health - I've enjoyed a week of being 90% better & being able to do so much more than I can normally - I've managed a 5 mile trek around Petra - okay my ankles were scarily puffed up by the end of it & low legs felt like wood & painful calves, - something akin to walking lots during pregnancy, but that was the only problem I had & passed quickly - I struggle to walk to the end of my street here

Every time I go to Egypt, or anywhere else that dry & arrid, I notice the puffiness I wake up with in my eyes & face every just morning goes completely, as does my permanent headache, breathlessness, swollen stomach & legs - I can literally feel it all leave my body as the plane hits heights - wee loads on the plane, - TMI [GRIN] as I do after a MLD session & its gone & feel it all return as we come into land back in the UK, by the time I'm out of customs I'm waddling with painful legs & headachey, breathless & this time round coughing again:(

I know this probably sounds very odd, but I've always felt that whatever causes this is key to a lot of my problems, but I've struggled to get my GP to listen & I suppose I can understand as it is difficult to explain - my calf muscles are again 4 sizes bigger than I am - they weren't last week - pre getting ill, my calves were always smaller than me - IYSWIM

Does any of this ring any bells with any of you, any ideas I can take back to my GP, as right now I feel pretty fed up of living like this - a week off has done me the word of good, coming back to it hasn't :(

TIA :)

I don't know anythng about any of your symptoms - sorry.

BUT I agree that Egypt is fantastic for symptoms. I went in January. here I was in chronic pain all the time. There, nothing. It was miraculous.

Can I suggest you change gp and start afresh? 9 years is long enough to give anyone to try curing you - let someone else try with fresh eyes

Can I suggest you change gp and start afresh? 9 years is long enough to give anyone to try curing you - let someone else try with fresh eyes

Thanks for the replies - sorry it wasn't showing in my "I'm on" so I forgot to come back I've had rough couple of weeks - think running around & swimming everyday like a loon & generally making the most of the climate benefits caught up with me - that & the damned weather here

Interesting you find it the same Ben, thats pretty much my problem too & like you say, when there - nothing :) I did also notice that my DDs intolerance problems ( lactose & additives) & IBS seemed to disappear too - which was a bit of a shock as we were struggling at this hotel with additives & DD was getting frustrated, so we decided to "suck it & see" & she was fine, no problems at all - so maybe it is just Egypt

merci I wish, sadly its not that straight forward, shortage of GPs around here means the one I got was allocated - the original was beyond awful & think she has left her stink all over my medical notes - she took offence at my arriving new to her, very heavily pregnant, much older first time Mum & well over due for a check up as I couldn't get a GP to take me on after moving Cities & had to wait for the PCT to allocate.

I arrived from a practice where I had a great relationship with my old GP & she was happy for suggestions & didn't treat me like an idiot etc - with a list of potentially dangerous things I was meant to be regularly checked for, which I naturally let her know about & it was down hill from there onwards - When I get full diagnosis with the birth injury I do intend to look into complaining as she moved to another area & is probably still a GP & with symptoms I saw her with after having DD, she should have picked up on things FAR sooner, rather than put me down as a complainer & tell me I shouldn't be working with a young baby

Thankfully she left & I then got my current GP & though she's a bit slack, she does at least listen, takes my problems seriously & will test for stuff if I ask, not ideal, but after the last one she is a breath of fresh air & having been back to see here since typing this question above, she does seem to have taken note of the fact that she missed the H. Pylori & was very attentive, she was stumped on the question above though, but is at least looking into it & I suppose in fairness I do have a lot of unrelated minor problems, which doesn't help things

So, you have fibro, you have ME and you feel better in a hot climate. Oh and you also have a h pylori infection and oedema.

merci what do you think? I think this lady might have an issue on her thyroid/adrenal axis and a low FT3 giving rise to the muscle and joint pains and the fatigue.

Could I venture to suggest that you should ask for some blood tests including: TSH, FT4, FT3 and antibodies, Vitamin B12 and folate, Vitamin D and also a full iron panel.

I am conscious that I was diagnosed three times with Chronic Fatigue Syndrome when I was actually hypothyroid, with iron, vitamin D and vitamin B12 deficiencies.

D

Thanks RockinD

Interesting you should suggest that, as its something I've always wondered about too, especially as my Grandmother & Brother where both diagnosed with Thyroid problems - forget which way it goes, as I'm foggy as hell right now, but my Brother has always been hyperactive & underweight as I was myself prior to getting ill & my Nana was until she became ill - myxodema ?? - thyroid removed

That said I've had all the tests you mention & they come back as "within normal range" - though I had to push for the TSH FT4 FT3 tests after the standard one came back fine & I read that test wasn't reliable - the first lot came back as abnormal, so they retested twice & those were "within normal range" -

I didn't realise that also covered oedema though & is there a link with H.Pylori too.

Its hard to explain to people, without sounding crazy, but I do sort of feel water logged & somehow I just know thats the route of all this, well most of it, bar the stuff I'm due an op for & I feel thats why the very dry hot desert temperature does me so much good & I notice the difference more on coming home IYSWIM

There is certainly a genetic link with some thyroid issues.

Myxoedema - the clue is in the name...

Your doctor should give you copies of your test results if you ask, together with the reference ranges. Your results are your data under the Data Protection Act and cannot be withheld. It's nothing to do with the access to medical records regulations.

I'm sure if you could get your results and put them on here the thyroidians would gather and interpret them for you, what do you think?

D

Well spotted rockinD, I didn't know about the h.pylori link as well. Interesting that you have thyroid probs in the family and a previous abnormal result as well. Well worth another test plus vitamins as mentioned by the marvellous rockinD

Well spotted rockinD, I didn't know about the h.pylori link as well. Interesting that you have thyroid probs in the family and a previous abnormal result as well. Well worth another test plus vitamins as mentioned by the marvellous rockinD

Myxoedema - the clue is in the name

Its funny that suddenly clicked with me when I left the computer earlier - doh - though it was only on typing I remembered my Nanas diagnosis - it was a lot of years ago

I've now got to convince my GP, which I know from asking the old one for an Endocrinologist appointment in the very beginning & being told I had no, as I had no symptoms its not going to be easy especially as I'm not considered overweight, though I am 25% heavier than I used to be - I was always tiny, even after DD was born, but pushing that fact had me offered counselling for anorexia

& now especially as I've only recently had the basic test redone & it was well within normal range - I did ask for results & it was with US range too

I've just been reading up on Myxodema & lots of it fits, puffy eyes & face, especially on a morning, breathlessness, aches & pains & body like lead, thinner eyebrows - but not the hair loss, which I've been told in the past means I can't have it - I never lost the extra thick hair I gained in pregnancy - I also have high BP, not low, no depression etc

So in short think I have a fight on my hands, but now knowing it fits with the fluid retention too - even if the GP won't acknowledge that either I think its something I need to push.

Would any of you know a good website for info, especially stuff like the H.Pylori link -

TIA :)

Do you have the figures from your test results? When I first started treatment my TSH was well within normal range, although a tad on the high side, but my FT4 was very low, meaning inevitably low FT3 and symptoms.

Have a look at this www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html for symptoms. Not everyone has all the symptoms. It's more a question of the percentage if you see what I mean.

D

Thanks RockinD I will have a look, hoping to find some sort of tick list to show GP

I did have it written down, but can't find it, but I checked online when I got home & it seemed to be in range for US ( I seem to remember they have a different results criteria, that means you can be okay in the UK & not in the US

from memory my recent basic test was result 12, but that might be wrong, like I say, foggy as hell since getting back home, feel like my brain is water logged

OOoo BRILLIANT - it IS a tick list :)

THANK YOU !!

WOW, thats about 85% definite yes,

& about 10% maybes based on things like cholesterol, Iron & liver enzymes been out of whack in some tests, but not on repeats & put down to things like hospital food & prescribed drugs

I can tick 100% on too many for it not to be taken seriously, Pain, Vision & numbness for starters

Thank you, definitely going back to GP to push for referral to Endo dept & more tests

12...

If that's your TSH it's way too high

If that's your FT4, it's way too low - should be in the top third of the range.

You go girl!

D

Thanks - I think so, but I really can't be sure, it could be totally wrong, I swear all this rain & damp weather is water logging my brain, I'm making no end of ridiculous mix ups ATM

Thanks to you, I'm gathering info on the tests I need for accurate diagnosis & when I have a bit of a clearer head to argue my point I'll be taking that list & the check list in the link to see my GP, where I'll be insisting on it been taken seriously & an Endo appointment - it all makes way too much sense for it not to be Thyroid trouble

thanks again :)

Hi RockinD
My 18 year old daughter was diagnosed with CFS/ME last year. She has just had what we thought was her first major relapse but have just found out that a blood test taken just before her relapse showed a TSH of 3.45 and one taken last week showed a TSH of 7.5. She feels really rough - exhausted, depressed, irritable/moody, can't sleep, cold limbs, major brain fog. Hasn't left the sofa for nearly 5 weeks. So - we have been referred to an Endocrinologist due to her CFS/ME diagnosis and previous problems with meds. He will run additional tests which may show what is going on..... Am wondering whether original diagnosis was wrong, whether she has both conditions or whether the CFS caused the Hypothyroidism. The GP was willing to start a trial of drugs but I feel it is safer to wait to see the Endocrinologist in case he can prescribe something more suitable. Not sure how long we will have to wait and she is not easy to live with at the moment!!

I would guess it was hypo all along. Why not start the drugs now if it's a long wait to see the endo? They will more than likely prescribe the same drugs anyway or if your daughter has problems with it, you will know in advance of the appointment

Have you been on thyroiduk (at healthunlocked.com) for advice? There's some other parents on there. Or maybe start a new post on here to get more attention as well.

Hope your daughter is soon well again. I'm glad at least you have a diagnosis and referral now

I would guess it was hypo all along. Why not start the drugs now if it's a long wait to see the endo? They will more than likely prescribe the same drugs anyway or if your daughter has problems with it, you will know in advance of the appointment

Have you been on thyroiduk (at healthunlocked.com) for advice? There's some other parents on there. Or maybe start a new post on here to get more attention as well.

Hope your daughter is soon well again. I'm glad at least you have a diagnosis and referral now