[Jumper]

I suffer from crippling flu-like symptoms from ovulation until a couple of days into my period (and mysteriously for a day or two just as my period ends). I get very shivery, fatigued, I can't concentrate, I get a sore throat and sometimes bad headaches. It's been like this since puberty, although to start with I had symptoms through most of my cycle, worsening at night (it still worsens at night). There will usually be at least a few days per month when I can barely get out of bed; and as a result I've never been able to work.

In some ways it's like a really bad form of PMS I suppose, but I don't really suffer too much with the mood swings or dysporia; considering how ill I feel I'd say I stay relatively good natured most of the time. Even so, I'm wondering if anyone with PMDD has suffered from anything like this? Officially I'm diagnosed with M.E., as a 'best fit' diagnosis, although most of my doctors agree that if it is M.E. it's a very unusual form of it!

I see an endocrinologist, and he's hopefully going to start me on Ovcon 35 (a form of combined contraceptive pill) next month; since it has such high oestrogen levels and low progesterone levels. Progesterone is our best guess for the culprit at the moment, since progesterone supplementation makes me much worse and even caused me to start losing my hair. Yasmin evened out my symptoms, making me feel slightly better than I do at my worst, but all the time. If the Ovcon 35 doesn't work he thinks I might be looking at a hysterectomy and oopherectomy at some point in the not so distant future (although he'd try putting me in a chemical menopause with oestrogen only HRT first). I just feel really alone with it since I've never heard of anyone else with my symptoms.

Sometimes I convince myself that the fact I only get it during a certain part of my cycle is just a coincidence, that it really is M.E. and that I'm never going to get better.

[Ashlee T.]

Sorry for my lack of knowledge in this, but what is M.E.? I may recognize this once I get the full name.

On a side note, welcome to WH! You will find many wonderful and supportive people here.

[Jumper]

M.E. (myalgic encephalopathy) is a form of chronic fatigue syndrome (CFS); sometimes the names are used interchangeably and the criteria for M.E. (as opposed to CFS) varies from place to place although it tends to be characterised by more viral-like symptoms than general CFS. You can be diagnosed with CFS from fatigue alone, but you generally have to have a lot of other symptoms to be diagnosed with M.E.

Realistically it gets used as a 'you're ill but we don't know why' label a lot of the time; as it is in my case. According to my various medical professionals, such a large variation in health across the cycle isn't usual for M.E. and I should really suffer from more worsening of symptoms after exertion than I actually do; they just can't find a better diagnosis at the moment.

[Jumper]

I just wanted to point out, I did do about 6 months of charting, so I know for sure that my symptoms correlate with ovulation (and the two days at the end of my period.. although nobody knows what that's all about hormonally).

I also get really bad hives during my luteal phase. I'm a strange one! It's almost like I'm allergic to my own progesterone (although I'm sure it's not that simple).

Thanks for your welcome also!

[Ashlee T.]

I did some reading on pubmed and found a pretty thorough entry called Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance.

The article says that typically a patient will undergo the following tests before a doctor diagnoses them with ME/CFS:
# Urine analysis for protein, blood, and glucose
# - Full blood count and erythrocyte sedimentation rate or plasma viscosity
# - C reactive protein
# - Serum urea, creatinine, electrolytes, and calcium
# - Random blood glucose
# - Creatine kinase
# - Liver function
# - Thyroid function
# - Screening blood tests for gluten sensitivity
# - Serum ferritin (children and young people only).*

I'm sure by this point you've probably had all those. But don't give up. Obviously I haven't had time to do a lot of reading yet, and I'm sure I'm not reading anything you haven't already read and tried, but some people (not medical journals) recommend taking Vitamin C, B12, A, and E daily.

I don't know what state you live in, but there seem to be some support groups around the US and in New Zealand. One group I saw has monthly meetings, and some correspond from online only and have a yearly meeting. I imagine a support group would be an excellent way to find others experiencing similar things.

As for the hives, do you have Autoimmune Progesterone Dermatitis? (is a rare disorder characterized by recurrent skin manifestations starting during the luteal phase of a woman's menstrual cycle). If so, the birth control pill should help that as you'll no longer ovulate therefore there'll be no surge in progesterone.

When you charted, did you notice anything odd about your temps or did they seem to be in a normal range most of the time?

[Jumper]

I'm a member of a UK M.E. group, in fact I have a voluntary role in the organisation (I organise my regional section). In a way that makes it even more mysterious because I've asked a lot of women (and posted on message boards) and never found anyone with similar experiences (well.. they get the illness symptoms, but throughout the month). My M.E. specialist has never seen anyone with this cyclical thing either, at least not to the same extreme. My endocrinologist wanted me to go and see this professor in London for a second opinion about my diagnosis, but he refused to see me.

I've had all those tests many times, plus a lot more. I do have some blood abnormalities, notably chronic neutropenia (low levels of a particular type of white cell, but my levels have never become dangerous thankfully), but I've had all the tests for the typical causes of that. So it's never helped us diagnostically.

As for my charts, they were textbook in all but one respect. I have an unusually low body-temperature; on average around 36C rather than 37C... and it's not unusual for my temperature to drop as low as 35.5C (that happens during the day aswell, not just first thing in the morning.. I had an operation last year and when I woke up they'd put me on heat pads to try and increase my body temp, but for me its just normal I didn't even feel cold). My temperatures were all taken orally (although with a very sensitive thermometer), so they're probably a little higher than that in reality.

I realise low temperature is a symptom of hypothyroidism but I've had all the thyroid tests under the sun (including the indirect ones, rather than just measuring my T3 and T4 levels). My endocrinologist is very aware of that side of things, it was is first course of action when I started going there. In some respect I have symptoms which are the complete opposite of hypothyroidism: for example I have to eat huge quantities to keep my weight up. I'm borderline underweight but people are often quite disturbed by how much I eat. If I eat a normal kind of diet I end up painfully thin (at my worst 6.5 stone even though I was 5' 9"), I once saw one doctor who refused to believe I wasn't anorexic even though I went and ate two pizzas when I got home!

That autoimmune progesterone thing is very interesting, I'd never heard of it. In some ways it does sound a lot like me (I get eczema which sometimes flare up that time of month too); although it doesn't explain all my symptoms. I have another condition which requires me to be on a constant very high dose of antihistamine, but even so these hives still break through during my luteal phase (and boy do I know about if I forget to take it... I look like a white and pink dalmatian). I'll have to mention it to my endocrinologist when I next see him.

I very much appreciate your help.

[Ashlee T.]

It certainly does sound like you're being proactive and doing everything you can to learn and be involved. Many people with this sit back and do nothing, get depressed and suffer many other ailments just from total inactivity both mentally and physically. You seem like a very strong person who has done very much the opposite. I commend you for that!!

It is quite possible that the ME causes some symptoms and the APD (if you have it) causes a different set of symptoms, though it would be quite coincidental. I do believe they are related somehow in your case. I hope for you that the birth control at the very minimum controls the APD and the negative effects that happen when your body sees that progesterone surge.

One more thing, there is a disease called Wilsons Temperature Syndrome. The thing about Wilsons is most people test in the normal range on thyroid tests. I'm copying some info off a website listing symptoms of Wilsons. People with Wilsons will most likely not match ALL these symptoms. And these may not fit you at all. I'm no doctor, just trying to piece things you've told me together. Here's the Wilsons info:

If you have a body temperature of less than 98.6 F. and some of the following symptoms you probably have Wilson's Syndrome. This condition involves a disorder where the cells of the body are unable to convert the inactive thyroid hormone, T4, into the more active hormone, T3. Wilson's Syndrome itself does not alter the thyroid hormone tests. It may exist in association with true hypothyroidism, however. In these cases, thyroid tests may be abnormal but the usually prescribed thyroid hormones may not entirely solve the problem.
Symptoms of Wilson's Syndrome may include the following:
acid indigestion
allergies
anxiety
panic attacks
arthritis
muscular/joint aches
asthma
bad breath
increase bruising
canker sores
carpal tunnel syndrome
elevated cholesterol levels
cold hands and feet and Raynaud's phenomenon
constipation/irritable bowel syndrome
lack of coordination
depression
dry eyes/blurred vision
dry hair
hair loss
dry skin
fatigue
fluid retention
flushing
food cravings
food intolerances
headaches including migraines
heat and/or cold intolerance
hemorrhoids
hives
hypoglycemia
recurrent infections
infertility
insomnia and narcolepsy
irregular periods and menstrual cramps
irritability
itchiness
lightheadedness
low blood pressure
decreased memory and concentration
decreased motivation/ambition
musculoskeletal strains
unhealthy nails
changes in pigmentation, skin, and hair
increased post-prandial response
premenstrual syndrome
psoriasis
decreased self-esteem
decreased sex drive and anhedonia
inhibited sexual development
increased skin infections/acne
increased susceptibility to substance abuse
abnormal swallowing and throat sensations
sweating abnormalities tinnitus (ringing in the ears)
inappropriate weight gain
decreased wound healing.

[Jumper]

The trouble with those Wilson's syndrome symptoms is that they're so vague. I do have a lot of them, but they're also symptoms of many many other ailments. I'm not convinced that my low temperature is making me feel ill, since I'm worst after ovulation when my temperature is highest (although I understand the logic that enzymes don't function so well at a low temperature). It's still something to bare in mind though, so I appreciate the suggestion.

I'm also hoping that the Ovcon 35 will work, it depends if I can tolerate the progesterone in it I suppose. It's only got a fraction of the progesterone in Yasmin, and that didn't really make things worse (just different, since I never got a break from it), so I'm more hopeful than my endocrinologist is about it. If it works, It'll be easier than a chemical menopause and surgery that's for sure!

[Ashlee T.]

True. It would be interesting to see how high your progesterone actually gets RIGHT after ovulation. The higher progesterone levels are, the lower the insulin levels are then there's a whole new set of issues.

I hope the Ovcon works for you too. I think chemical menopause or surgery should be last resorts (I can tell you agree) and I'd be sure to get at LEAST a second opinion (maybe even a third) from a different endocrinologist and gyn before even considering a decision like that.

My sympathies go out to you, it's very frustrating when there's an unsolved mystery going on inside of you. If you're like me, you spend countless hours researching and trying to figure it out yourself. Sometimes it seems like some doctors throw out bc as a bandaid to mask the symptoms, instead of getting down to the root of it and figuring it out. I could never be a doctor, because all I'd do is research ALL the time.

[Jumper]

Funny, your reasoning behind not becoming a doctor! My endocrinologist is pretty good, for a couple of my appointments he's sat there for ages researching, even sitting there on the internet looking through journals etc. He once went through every birth control pill listed on the British Medical Journal website. Fortunately/unfortunately, he spends so long with his patients that his clinic usually runs at least 3 hours behind schedule by lunch-time; his other members of staff don't seem to like him too much for this reason!

I've had a lot of TERRIBLE doctors in my time, but I'd say he's one of my best. I was put on the Yasmin by a GP, I really had to fight to get to see an endocrinologist. The Ovcon was actually my suggestion, since it avoids the problems of oestrogen dominance and it has the lowest progestin to estradiol ratio of any combined pill currently available. He agreed with the logic, although he's not convinced I'll be able to tolerate the progestin content of it (and neither am I).

I will probably consider getting a second opinion if we get to the point of really drastic or permanent treatments, infact my endocrinologist says that if we go down that path it will be in conjuction with a gynaecologist. So not having a second opinion isn't really possible.

I even got sent to a neurologist to determine my stroke risk on the combined pill, (I have VERY ocassional migraines with aura). She said I was low risk, but unfortunately decided that I probably just had M.E. and that people with M.E. tend to be hypochondriacs so there's probably not any real connection with my hormones (not that anybody asked her opinion on the hormonal side of things). I don't think she even really believed my migraines with aura were real! She also implied that there was no point getting better if I couldn't have children, and that if the Ovcon doesn't work I should just give up! (I was especially shocked to hear this from a female doctor)

I suppose I'm frightened that people I might get a second opinion from will be equally judgemental. My endocrinologist is the only medical professional I've ever seen who's taken this seriously. Even those who admit they've never seen this before have just shrugged their shoulders over it.

I'm just so terrified that this won't be fixable; if it just a very unusual form of M.E. I know that after suffering for so long my chance of recovery is extremely slim. I so badly want to be able to function as a normal member of society.