Professor Howard Bird HCTDS Hormones

[villiers]

Fellow members I would like to offer a big thank you to Professor Bird who kindly corresponded with me recently and offered this information for our site. This doctor is clearly a very decent man.
Villiers
Thank you for your enquiry. I`m enclosing the information leaflet I give to patients with BJHMS as well as to those with Type 3 EDS should this be of use. i suspect it would also apply to loose joints in Marfans as well as in Marfans/EDS overlap but I`m not aware that this has ever been formally looked at.

best wishes,

Howard Bird

HORMONAL ASPECTS OF HYPERMOBILITY

HOWARD BIRD
University of Leeds, United Kingdom


Some female patients with hypermobility have been disappointed when symptoms of which they are complaining to their doctor, nurse or friends are summarily, even chauvinistically, dismissed as ‘hormonal’. There is actually a considerable amount of truth in this though only occasionally will the person making this diagnosis have thought through all the ramifications.

This article considers what types of hypermobility might be susceptible, what hormones might aggravate the symptoms and, when this is occurring, how things might be improved.

Hormones involved
A hormone is sometimes described as a ‘chemical messenger’ that is secreted from a gland circulates through the bloodstream and, finally, reaches the organ at which it is directed where it exerts its effect. Although there are many types of hormones, all of different structures, two main groups are relevant to hypermobility.

Firstly are the corticosteroids, which comprise three families. The first group, the mineralo-corticoids, alter minerals and fluids within the body and probably have no influence on hypermobility. The second group, sometimes referred to as metabolic steroids, are secreted from the adrenal gland and control the diurnal (or 24-hourly) variation in body function, which allows organs to rest during sleep but ‘tones them up’ during the day. This, in turn, may produce cyclical symptoms of pain and stiffness over a 24-hour period in joints but this is normally only a minor problem. The third group comprises the sex hormones, which are divided into three types, androgens (mainly in males) and oestrogens and progestogens (mainly in females). The balance between oestrogens and progestogens, which is constantly changing, controls the 28-day menstrual cycle in the female in whom these hormones are almost absent prior to puberty and tail off after the menopause.

A further group of hormones relevant to hypermobility have a specific function in pregnancy. Relaxin is considered to relax the ligaments just prior to childbirth so the pelvis can open widely to allow the safe passage of the foetal head. Prolactin produces milk when the mother is breastfeeding and also has a relaxing effect on the joints. In addition, during pregnancy, oestrogens and progestogens climb in concentration, all of which accounts for the undoubted loosening of the joints in pregnancy. This normally remits soon after childbirth but may be prolonged if the mother is breastfeeding. Some research that we did several years ago suggested that this invariably made joints looser in a first pregnancy, made them slightly looser in a second pregnancy but gave no further additional loosening in third or subsequent pregnancies.

What types of hypermobility are affected?
In males, in whom hypermobility is often less pronounced than in females of the same age, cortisol may contribute to diurnal variation in symptoms as in females but hormones related to pregnancy, clearly, are not produced. The predominant sex hormones in males are androgens, which probably have very little effect on collagen though may increase muscle bulk around the joints. In general this is likely to be helpful, the increased muscle power more than outweighing any effect on the collagen structure.

In females, it is quite a different story. Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds. This effect is most pronounced when the joint hypermobility is due mainly to collagen structure (the clue here is that all joints are almost equally lax throughout the body). Where the hypermobility is a marker of unusually shaped bony surfaces at the joint (typically these individuals have very pronounced hypermobility at only a small number of joints), the effect of hormones is much less pronounced.

Those females whose joints become worse at the time of menstruation often note that if the periods become irregular, for whatever reason, joints not only become worse but are worse for longer. This may be because in these patients progesterone is present in high concentrations at times when it would not normally be present.

Sometimes irregularity of periods suggests gynaecological conditions such as a cyst on the ovary or a condition called endometriosis. In a few patients we have suspected this diagnosis on the basis of joint deterioration alone, even before symptoms have become severe enough to attract the attention of a gynaecologist!

Problems with contraceptives
A variety of hormonal contraceptives are available. Many are ‘combined’ contraceptives, either a mixture of oestrogen or a progestogen given at the same time or contain these two drugs sequentially, the progestogen after the oestrogen to mimic the normal female menstrual cycle. Others are entirely progestogen containing. Injected contraceptives (the most common is called Provera) are entirely progesterone and recently intra-uterine devices that are impregnated with a reservoir of progesterone (e.g. the Mirena coil) have become popular.

When careful gynaecological and rheumatological histories are taken together, it is surprising how frequently hypermobility, which was only slightly worse at the time of normal unmodified menstruation, becomes significantly worse with certain contraceptive pills, especially those containing progesterone alone or with progesterone depo contraception preparations or with mechanical devices impregnated with progesterone.

If you have hypermobile joints and have been taking hormones to modify menstruation or as contraceptives, you should discuss this further with your doctor, perhaps showing him/her this article, since doctors tend to be well versed in other side effects resulting from hormones, though not necessarily with the effect these have on your ligaments. Oestrogens, like progestogens, have their own side effects, one of the principal ones being a slight tendency to cause venous thrombosis, a feature much less frequently seen with progestogens. Therefore a progestogen-only preparation may have been prescribed for good and well-intentioned reasons, even though the downside is it will have made the joints worse. In general, however, patients with hypermobility are safer avoiding injectable progesterone and progesterone impregnated devices. They might also be better avoiding contraceptive pills that contain progesterone derivatives alone. However, if such a preparation was introduced deliberately in a patient for whom high oestrogen levels would be dangerous, it may be worth trying a different progesterone contraceptive. Newer progestogens (such as Desogestrel) are derivatives of nor-ethisterone, which is more closely related to testosterone than the early progesterone analogues such as didrogesterone and medroxyprogesterone. There does seem to be individual variation in response within this group so it may be worth trying one or two such hormones in turn.

The hormonal content of all contraceptives is clearly listed in the British National Formulary, allowing general practitioners a wide and informed choice.

If there are increased joint symptoms associated with menstrual irregularities in a patient not taking a contraceptive pill, it may also be worth trying an oestrogen-only preparation for a trial period in the first instance to see if this improves things. If it does, the choice of whether any slight risk in using such a preparation is worth taking for the significant improvement in the joints might ultimately be a decision for the patient though should be taken in conjunction with the General Practitioner, if necessary with expert gynaecological advice.

Similar arguments apply to hormone replacement therapy after the menopause. This normally involves a small amount of oestrogen to which a progestogen is added in women with an intact uterus. Since the oestrogen amount is very small (deliberately so in view of the slight increased risk of breast cancer when oestrogens are given to the elderly as well as the risk of thrombosis), the amount of oestrogen is often not enough to provide a protective effect for the joints.

[ Amended March 2008 ]

[lizzieb]

Excellent work on getting this very useful info Louise, keep up the good work dear!

Hugs

lizzie xxxx

[speedwell]

..interesting and helpful...

thankyou louise and Professor Bird for being interested and caring about this.

love & speedwell

[lizzieb]

Now here's a thought Louise, maybe this is why my daughter has so much trouble with her monthlies. She has had a bad continuous one for a month. It has finished now but last night (early hours this morning) I had to get her to A&E as she was suffering awful pains in her lower abdomen area.

Because these pains were in the form of 'contractions' they did a pregnancy test as they thought she was in labour. But of course we knew that was not the case lol.

They believed the pain is caused by her uterus contracting to get itself back to normal after such a long and heavy period. It can in some cases contract just like it does when you are in labour hence the apparent 'labour pains'. As Natalie has HMS this could be why she is having so many problems.

She has a scan booked already for tomorrow and when she gets the results it would be worth her asking the GP about the connection.

We were telling my neighbour about Prof Birds letter to Louise, and he was most interested. He is a 60 yr old Nurse who works for NHS Direct. He said it was a very interesting and worthwhile knowing about. Bless this man, it is twice now (Christmas Day and today) that he has gotten out of bed in the early hours to pick us up from A&E. A friend and neighbour worth their weight in gold.

lizzie xxx

[villiers]

I'm pleased that this has proved helpful thanks To Professor Bird. As some of you know I had a consultation with Dr Tregear last week where I made the decision to have my hormone checked yearly. Last weeks results were excellent I'm pleased to say.
Both of my aunts ended up in wheelchairs post menopause (my uncles and father still active) and being 48 I wanted to attempt to avoid that fate. I began delving into hormones and the result was the great and swift response from Professor Bird.
Female hormones play a very complicated role in connective tissue disorders and this is an area of hypermobility that is often overlooked so I think Natalie had better be throughly examined and very informed when she sees a Gynaecologist.
Dr Child did mention that heavy periods can be attributed to HCTDS so I think it is worth examining as the misery of excessive cramping and bleeding can be exhausting not to mention depressing.
Louise xxx

[Zoemarie]

I have found this article extremely interesting and of the greatest help. I have recently been diagnosed with HMS after years worth of suffering joint/ligament problems, which no-one ever connected until recently, I also have endometriosis. After having 2 ch I was still suffering from endometriosis (even though I was told pregnancy would cure it, especially after 2 pregnancies so close together) and was advised to have a Mirena coil fitted; which I have had in place since Sept last year. However, the pain in my joints has increased significantly. I had started to suspect the coil, but this article now provides me with the evidence I need to go back to the Gynae Consultant with next month. I feel like the whole picture is becoming clear and that I am really starting to understand my body and all its querks.

Thank you sooooo much Z x x

[villiers]

Hi Zoe
Welcome to the forum.Professor Bird is a very decent helpful doctor and the only specialist I have heard talking about hormones and their effect on joints. Endometriosis is thought to be caused by hormonal inbalance. Unfortunately there are not many hormone specialists in the Uk and your gynaecologist might not be expert on hormone balancing. Often it is worth talking to an endocrinologist with an interest in the sex hormones.
That is the path I chose and if you do not get satisfaction from your gynaecologist it might be an idea to ask your GPto refer you to an endocrinologist with an interest in this field.
Villiers

[lizzieb]

Hi Zoe,

Welcome to our family, it is always nice to hear from other people and to try and help or advise them in anyway that we can. We pride ourselves on being a friendly bunch.

Sounds like Louise has helped you hear with her post. She is very knowledgable about such things and does do a lot of research so knows what she is talking about.

I hope that you can get your problems sorted out. Please let us know how you get on.

Take care

lizzie xxx

[BBaiba]

Hello,

I read that Professor Bird quite often links hypermobility with hormone balance/imbalance not with heredity. I would like to see Prof Bird as all of you are giving so good references about him. I can't figure out what causes my laxity of joints because I can't score points to be hypermobile. My laxity started so late (about 23) and is getting worse with every year. I am afraid I will need to give up job and I am afraid I will not be able to have a baby. I am 31 now - cracking and having pain and getting worse. Reading about hormones gave me some hope because 7 years I had anorexia, I didn't eat well and had breaks in my periods. I used a little bit hormone therapy to get my periods back and thank's god anorexia is gone and i started eat quite well. Could you share your experience please about hormones - Which hormones did you check and was it some particular time during your periods (before, during or after) when you have to check? it should be different levels of hormons in different days of periods.

[villiers]

Hello Baiba
Welcome - I had oestrogen, progesterone, DHEA and testosterone levels measured with a full blood profile on the 21st day of my cycle. Anorexia disrupting your cycle would have caused a hormonal inbalance and increased laxity if you are suseptable.
I had my hormones checked by an endocrinologist in Harley Street.
Louise

[BBaiba]

thanks Villiers! Is it important to check on 21st day of the cycle? Or is it just one of the days when your laxity is increased (ie 5 days before periods)?

Happy New Year!

[villiers]

The 21st day is best but I think the final five days should be fine.
Happy New Year
Louise

[lizzieb]

Hi Bbaiba,

Firstly a very warm welcome to Marfan Friends World. It is nice to have you on board.

Secondly, regarding the Hormones and HMS etc. Louise is very knowledgeable about all this, having researched the problem. So you will get great help and information from her.

If there is any other way we can be of help to you - please ask away and we will do our best.

Take care and a Happy New Year.


Hugs

lizzie xx

[BBaiba]

Hello and thanks for sharing your experience!

Yesterday I was to GP and asked about hormone checks, which you recommended but doctor told I've been already checked on these hormones. I was not aware of that because when I asked for copy of my blood tests at reception all I got was all Thyroid related tests, nothing else!
GP told all "woman" hormones are ok but from your posts and particularly from copy of Prof Bird's email it seems that particular days in cycle are important. Could it be that I have hormone balance during the rest of cycle but only during 5 days prior and 2 days after cycle it's out of balance?
Another question is - do you know how hormones "behave" during period?

I start to learn now that I have to be the doctor for myself - I havn't met the doctor yet who would be interested to find out what's wrong with me! It's so disappointing...

[villiers]

Hi Bbaiba
The hormone checks are intricate and important. Often the hormone range shows as normal for the average person but not necessarily optimum for the individual. My hormones showed as normal for the average person BUT I still needed them raising slightly. Getting this type of treatment through the NHS is not easy. I saw my anti aging specialist privately and had estrogen , progesterone, testosterone, DHEA, SHGB, FSH, cholesterol, trigylcerides measured.
On the NHS often they only test thyroid (basic TSH and FSH test. Just testing these is not very reliable.
Villiers

[BBaiba]

I am quite new here and am searching throughout forums to find out what's going on with me. I haven't met doctor yet who would take my condition seriously and would give me diagnose. I hear only that I am looking so good and many people has such a problem like I have.
That's why I was happy finding that Prof Bird and some other doctors believe that hormone imbalance has direct impact on HMS. Anyway - I can't get referral to Prof Bird because I am "out of area" - in Northern Ireland ...I decided to start research on my own. There is no other way - I can't find a good doctor and I can't sit quietly when my joints become weaker and weaker.
I wold like to ask you for advice regarding endocrinologist and gynecologist. Have you met these specialists, who are interested in joint laxity and believe that careful hormone checks could be related to joint laxity? If yes, please, help me.

[lizzieb]

Hi Baiba,

Louise contacted Prof Bird herself, maybe you could do the same and maybe show his reply to you to your GP. Only a thought. Often the medical profession do not take us seriously and sometimes you have to really push for answers. There are hyper-mobility forums on line, maybe you could contact one of them to find out how other people managed with the medical profession. There quite possibly is one in Ireland - its worth a look see!

Hope you find the answers you need honey.

Hugs

lizzie

[villiers]

Hi Baiba
You could ask Professor Bird if he knows of a specialist in your area. However the NHS dislikes prescribing hormone treatments and usually try and scare women away from them by saying that there is a cancer risk. I did plenty of research and learned that the risk of cancer goes from 43/1000 to 44/1000. I looked for an endocrinologist who was interested in using these hormones having seen two of my aunts end up in wheelchairs. The hormone estrogen raises collagen levels. It can be bought on line. PM me if you decide to try it yourself but I will understand if you want to see a doctor first.
Villiers

[BBaiba]

is 17a-hydroxyprogesterone related to joint laxity as well? I got my analysis where only this one hormone is slightly too high but GP could not explain me what hormone "is doing" in our body. The name from the hormone says itself that it's some kind of progesterone but after searching on net I found that it's more related to adrenal glands. Maybe I am wrong. Could you share please if you know something about it?

thank you!