My story (warning VERY loooong)

[Guest guest]

I feel so overwhelmed right now I don't know where to begin, so my apologies if

this is a bit disjointed and jump back and forth in time.

I'm Sandie, I'm 28yrs old and I want my health back. I've been ill for at least

10yrs, before that I had psych problems in my teens for about 3yrs (major

depression amongst other things).

Now when I recovered from my depression, I started to become physically unwell,

almost as if now my mind had recovered my body broke down. I searched and

searched for an answer to why I felt so ill, hypothyroidism came up but I don't

remember much now but I'm pretty sure it was tested and I was told it was fine,

as with all the other tests that were done at this time (2000) I continued to

look for a reason and found M.E, as it seemed evrything else has been ruled out

this is the route I went down. My GP (different one to who I see now) referred

me to an M.E specialist, who delightfully refused to see me based on my

psychological history, how charming! I was furious that I was being

discriminated against, and went on my own search for a private specialist, I saw

one in Bristol and he said that it was more than likely I was suffering with

CFS, he wrote to my GP and that is the diagnosis that I have lived with for the

past 10yrs. But now I want to find out the real reason why I feel so crap,

because I have been enlighted as to the inadequacies of the NHS and their

" normal lab ranges " and more cost effective tests that don't actually show

what's really there. Of course there is no cure or real treatment for M.E so I

was given, pain meds, antidepressants etc none of which helped. I struggled and

struggled and over the years I experienced a gradual improvement, but still a

limited life. In this time I was prescribed amitriptyline and also paroxetine

neither of which alleviated my symptoms of persistent fatigue and cold and

crippling back pain, so much for a continuation of the depression!

In 2005 in married my husband, and have always been desperate to have children

and couldn't wait to start trying, however even as a young child I had an

intuition that I would have difficulties conceiving, little did I know the

extent of these " difficulties " . I came of the pill had one period and then they

stopped, completely. I understood there may be a period of adjustment whilst my

body settled down but I waited and waited and still nothing so off I go to my

GP, who thank god dealt with me swiftly due to the fact I had been charting (or

trying to) my cycles/ovulation. I was reffered to the fertility clinic lots of

blood tests were done, and I was given 6mths of Clomid to get me ovulating along

side another drug to kick start my periods, I was monitored to make sure I was

ovualting and left to " try " on our own. I need to say it was found my husband

had a poor sperm count. 6mths later still no pregnancy so I was asked if I

wanted a Laporoscopy or a Hysterosalpingogram, I knew I wanted a Lap it was what

I wanted from the beginning as this would diagnose Endometriosis and show up any

other issues. I had been to my GP with a hunch of Endometriosis but was fobbed

off with IBS, all because of their precious budgets! they wouldn't pay for a Lap

on a patients hunch, this made me so angry. So when I had the chance at the

fertility clinic I jumped at it, and wasn't surprised when they did find

Endometriosis but I was devastated and angry. They also found I had a blocked

tube, and my ovaries looked poly cystic, but as my wonderful blood tests had

come back negative for PCOS they did not diagnose PCOS (another self diagnosis

made years ago. I was also tested for insulin resistance (another marker for

PCOS)but never heard back from that, I have recently found out it was never done

and a fasting glucose was done instead!!!! I do recall a mix at the time of

taking the bloods about which bottles to use. I did not know of the link

between Endometriosis, PCOS, infertility and miscarriage to Thyroid disease

then, otherwise I would have pursued it long ago, I am annoyed they did not

question me further on other symptoms, as you just don't think your fatigue

might be linked. Again I have since be told the don't look into it any further

than the TSH unless they have reason to suspect the thyroid, well how the heck I

am supposed to know all the possible causes for my infertility!! why didn't they

ask??? Onto IVF treatment, we were incredibly blessed that after our IVF attempt

we had our Wonderful daughter. Being a mother has been everything I had hoped

it would be and was desperate for more, only it hasn't been so easy this time

round, I've had 3 cycles all have gone wrong, I had a terrible miscarriage

which landed me in hospital because of the blood loss, I then had severe OHSS

(ovarian hyperstimulation syndrome)on my 3rd attempt so had to abandon the cycle

and freeze the embryos, I was hospitalised for a week and took 3mths to fully

recover, although it has certainly exacerbated my gynae problems. I then went

on to a frozen cycle to use my embryos which failed, I believe it was too soon

and my body had not recovered from the trauma of the OHSS. It was then that

they finally decided I did have PCOS, as the way I reacted to the IVF treatment

(miscarriage and OHSS)and appearance of my ovaries was that of the disease. I

was started on Metformin 2x500 once a day, I finally have regular periods. But

they are horrible periods! I feel very ill when I am due and on, totally

exhausted,alot of back pain cannot stand for any period of time, headaches,

nausea, cramps, bloating etc etc etc.

Since having my daughter the gradual improvement I had made started to decline

again, gradually at first now more rapidly in the last 6mths. What scared me

into action was the quick temper that is so uncharacteristic of me, and shouting

at my daughter for such minor things, not to mention she is suffering in other

ways (she's nearly 3yr)she's the light of my life but I'm not able to play with

her as I'd like, all to often I will say to her " Mummy's too tired " or " Ican't

pick you up Mummy's back hurts too much " and it kills me inside to think she's

missing out on so much, I rarely leave the house alone so she only gets to go

out when my husband is off work or when my Mum looks after her, still I feel

terribly guilty.

My cognitive impairement had become significantly worse also, which is most

frustrating this is a lsit of my symptoms that I took to my GP:

My symptoms:

Fatigue- I wake unrefreshed even after 9-10hrs sleep, early nights make no

improvement, I have become resentful of having to get to bed before 10pm in an

attempt to minimise the damage, as I struggle to get done what I need to do

before this time (without around) and still have time to enjoy myself.

The fatigue is both physical and mental, frequently feeling " slow "

The lack of energy and persistent tiredness restricts my daily activities with

so she suffers too.

Feeling cold- please see temperature charting

Hair loss.

Low sex drive- non existant, I have no sexual thoughts, this causes problems in

my relationship , I do not want to be touched at all and withdraw.

My memory/cognitive function are geartly impaired-

Forgetting what I have done (repeat the same task,toilet, hairwash etc)

Forgetting what I was going to do or get

Forgetting the names of objects or saying the wrong name

Forgetting mid sentence what I was saying or going to say or even talking about.

Impaired cognitive function is embarassing, demoralising and extremely

frustrating. I was once a very articulate academic person, because of my

cognitive impairment I often now feel inferior to others.

Extreme increased effort is required to focus/concentrate/hold

conversation/study, so much so I avoid engaging in such activities that are too

mentally demanding and draining.

Short temper/anger easily- uncharacteristic of me, scares me with my daughter.

High levels of frequent anxiety are exhausting,I feel I am in a persistent

" tense " state

Would love to be able to exercise as I used to enjoy it, but I don't have the

energy and it causes pain disproportionate to the exertion.

Diminshed ability to cope with stress.

Frequent headaches- mainly upon waking that can last most of the day.

Infertilty- endometriosis, PCOS, miscarriage - connections to thyroid imbalance.

Going back to the feeling cold, I have been charting my temp, for hypothyroid

and adrenal fatigue, my basal body temp in the morning has been as low as 35c

never higher than 36.1c averageing at around 35.6c. Mid afternoon temps have

been as low as 35.4c and in line with the adrenal temp charting have seen

fluctuations of up to 0.7 when comparing days averaged temps. I have also done

the pupil test and my pupils do " flutter " and cannot stay constricted, I also

have issues with bright lights and noises, so am lead to believe there is some

adrenal involvement.

I had no idea there were so many conditions that have the same symptoms and that

can co-exist with hypothyroid.

We have recently moved to a new home/area and so at a new GP surgery where I

don't know them and they don't know me, this could be both good and bad.

However this first GP I saw regarding possible thyroid had my blood boiling!!

she was so dismissive of me and my symptoms (raked her hands through my hair and

said doesn't look like it's thinning! hmm did she know what it was like 5yrs ago

to compare it to? does she see how much comes out when I brush it/run my hands

through it? does she see how much blocks up the plughole/covers the

carpet/floors? umm NO. Cue a few more comments like this and then " sounds like

depression to me " ARGGGGGGGGGGGGGGGG me screaming inside, she would not even

entertain the idea that my psychological symptoms were related to hypothyroid,

adamently stating that depression/anxiety are NOT symptoms of hypothyroid, I was

so gobsmacked I didn't bother to try and educate her otherwise, had I not been

so unprepared for a fight with a GP I would have stated my being on anti

depressants had not alleviated my symptoms previously. She did order the blood

tests (but I didn't know only TSH)stating that I keep an open mind!!!! pot

kettle black spring to mind. I was so chewed up inside after seeing her my

anxiety levels went through the roof, I seriously didn't know how I could cope

with anything else not matter how minor. I made an appointment to discuss the

results with my own GP, not that narrow minded, callous little *****, and made

sure I was prepared this time. Got all the info I could from the internet and

wrote him a letter to take with me to read to him, I was really nervous before

hand, but was relieved he was nothing like the cow I'd seen before, he was much

more sympathetic and listened to me, but did admit this was out of his depth and

referred me onto an NHS Endocrinologist, who I have now found out does NOT

specialise in thyroid disease, to have the further blood tests.

I am now seriously considering scraping the money together to see Dr P, I just

have to convince my husband, as he seems to think if we have an appointment on

the NHS we should go that way as it's free, we are struggling financially,

partly due to the fact we are saving for another cycle of IVF next year. I

forgot to mention the relationship problems my illness has brought about but

they certainly do make things difficult, he doesn't understand how bad I feel

sometimes and still expects too much of me, I have withdrawn physically from him

and don't even really like to be touched, of course he has always taken this

personally despite my repeatedly telling him otherwise, I get so frustrated that

he says he loves me and wants to help, yet the things and ways that he could

help he doesn't do! I need him to educate himself to help me fight but he

doesn't and this is just an example of that, if he read of the experience (from

other people) I am likely to encounter with an NHS endo then seeing Dr P would

be so blindingly obvious the best choice, just another fight I don't need. I

have tentatively suggested using the IVF fund to go private and get me well, but

he voiced concerns of what if we don't get the answers we want? i.e it's not the

thyroid, or something that's treatable, and we end up wasting more money, I

once spent nearly £600 (all my savings at the time) on an M.E treatment only for

it not to work, no doubt this is very ingrained in his mind, I too share his

fear but there is always the " what if " ? There has to be something wrong with me

to be like this, I only hope it is treatable and I won't get what I most dread

and that is my diagnosis of M.E reconfirmed.

Sincere apologies for the length of this post (and for any typos, thanks brain

fog!), I did warn you it would be long,but I like to be thorough (if only more

docs were!) well done if you made it to the end. I look forward to unravelling

the mystery of my illness with you.

Luv

Sandie