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Please Help: Endocrinologist v GP on blood test results/mirena. Utterly confused.

(15 Posts)
notbloodybranston Fri 12-Aug-11 18:02:12

I went to the GP 4 weeks ago after months of feeling exhausted (dragging myself out of bed) and v v irritable with DH and DC. Have also put on lots of weight. It doesn't sound like much, but I am sort of living in a fog whereas I am normally quite organised and positive.

GP's first thought was thyroid (especially as my thyroid is largeish - have a small goitre), and for years he has been testing it but it always came back borderline underactive. This time the results came back fine. I paid for a private referral to an endocrinologist as have history of PCOS, family history of thyroid and GP didn't seem to have any other ideas.

Endo Consultant ordered lots of tests - most of which got lost going between two local hospitals. I spent days ringing between labs, biochemistry labs, doctor's receptionists until they admitted they were lost. Normally I would take this sort of thing in my stride and just sort it - but the whole palava really knocked me and I have been a weepy.

Finally make it back to Endo with what I thought was full clutch of test results. Thyroid is fine (she did all the extra T4 /T3/antibodies tests as well). However, my LH and FSH levels are low (both are 3). I have the mirena coil (for about 15 months) so I don't know where in my cycle I was as I don't have periods. The consultant said that low LH and FSH would make me feel tired, snappy and gain weight. Also my Vit D was very low which would make me tired.

Consultant said that two things could cause the brain to produce low levels of LH and FSH: 1) problem with the pituitary gland 2) depression and stress. She couldn't tell if there was a problem with the pituitary gland as my test results STILL weren't all there -prolactin and cortisol were missing - so I have to get them redone and sent to her. I asked if the coil could lower the LH and FSH levels but she said no.

So I go back to GP asking for a blood test forms (for prolactin and cortisol) and he reads letter about LH and FSH. He says that low results of these hormones would have no affect on my mood, weight etc. He agrees they could be lowered by 1) pitutitary 2) depression but also things they could just be lowered by 3) the coil. He seemed to be saying that the LH and FSH levels don't matter and that I should just take anti depressants.

I asked if I should take the coil out so that the LH and FSH levels rise and he just laughed and said that it wouldn't make any difference.

Thank you if you made it to the end. My DH and I are just so fed up and tired we don't know what to do so if you can shed any light on this I would be grateful.

KilledBill Fri 12-Aug-11 19:41:10

Im afraid I cant help you with all the thyroid / hormone level issues, but after researching the Merina myself and the many negative stories ive heard, I'd definitley go and have it removed. Go to your local family planning if you have to, and tell them to take it out.

I have a sneaky suspicion that in the next fews years, all will come out, the medical profession will stop hiding behind this thing and it will either be banned or will come with full warnings of the (now accepted) side effects.

AuntieMaggie Fri 12-Aug-11 19:48:54

I'd go with the endocrinologist - after all it is her specialism!

Try taking Vit B complex and Vit D supplements which will help a bit with the low moods until your other results come back.

Good luck.

sleeplessinderbyshire Fri 12-Aug-11 19:55:15

LH:FSh are definitely not affected by mirena

notbloodybranston Fri 12-Aug-11 22:59:24

Thanks so much for the replies, it's a relief to think I am getting somewhere

Killedbill - am definately going to get it removed, just not until next blood test is done.

Auntie Maggie - just started the supplements and fingers crossed

Sleepless - I know I am a pain - but can you point me to any website/article/anything that I can show to the GP and say that the mirena coil doesn't affect LH/FSH? It's just I want to go in and say "Look at this"

Bumping for the night crowd - anyone with knowledge of low LH/FSH?

Thanks

sleeplessinderbyshire Sat 13-Aug-11 09:15:29

could suggest GP reads John Guillebaud's book (name escapes me but it is the bible when it comes to contaception and the info will be in there) I'd expect every practice to own at least one copy. otherwise try the faculty of sexual and reproductive healthcare website

mischiefmummy Sat 13-Aug-11 09:26:48

Please please have the mirena taken out - regardless of what the medics are saying. I had very similar symptoms and managed the mirena for about 6 months before having to really insist that the GP take it out. I was a whole new person within a week.
There are some real scare stories about mirena sideeffects in the states and possible law suits as a result.
At least by taking it out you can appraise the situation knowing there are no other additional hormones (no matter how small the amount) in your body which may be affect the way you feel. Some people can be very hyper-sensitive to even miniscule doses of hormones/drugs.
In the end I just went for a simple copper coil, and it's fine.

notbloodybranston Sat 13-Aug-11 12:20:25

Thanks All.

Copy of letter from consultant to GP arrived this morning. Please skip over this if it is boring.

"Diagnosis: Hypogonadotrophic hypogonadism
Investigation: TFTs, basal blood tets all normal with Vitamin D insufficiency. Cortisal, IGF-1, prolactin awaited...

her LH was low at 3 as was her FSH with a borderline low oestrogen level of 138. This may represent hypothalamic suppression secondary to depresssion but can also be seen sometimes due to systemic progestogen release from her Mirena coil."

It goes on to say that she will wait and see what the outstanding blood tests say.

Question What does the word "systemic mean in this context? Any thoughts?

Mischiefmummy I was so chuffed with the mirena coil as it stopped the 2 week long heavy periods. Now I can't wait to get rid of it.

KilledBill Sat 13-Aug-11 18:28:37

In this context im pretty sure by "systemic" she means across your body, through your system including hormones and hypothalamus etc, im no doctor but that is what is suggests to me with the rest of those results.

Very interesting - its the first documented case ive seen where a medical professional is admitting the mirena is not "completely local to the womb".

notbloodybranston Sat 13-Aug-11 19:16:34

So I wonder why the GP wouldn't admit it? He seemed to say

a) having low levels of LH/FSH/Oestrogen has no physical affect on the body or mood. This completely contradicted the Endocrinologist, who said that low LSH/FSH would make me moody, gain weight and feel very tired.

b) even if I have the coil removed I will still feel ill because either I am depressed or because there is something wrong with my pituitary gland.

Sorry - I am usually fairly bright and able to get to the bottom of things myself but at the moment I can barely string a sentence together, and seem incapable of retaining info. Friends and mum are convinced I am not depressed but that there is a physical ailment. DH not so sure as I cry on him a lot.

catsareevil Sat 13-Aug-11 19:21:30

You can usually expect an endocrinologist to know more about endocrinology than a GP.

If you do have the mirena taken out then you can assess whether it is causing your current problems. The worst case scenario would then be that you would have it reinserted if you wanted, which isnt great, but obviously something that you have managed before.

PrettyCandles Sat 13-Aug-11 19:33:57

I'd be inclined to start over with a new GP. This one doesn't seem to consider you an equal partner in your own well-being.

FWIW, I have a Mirena and a history of depression. Apart from one sharp, completely atypical, two-week episode about 6w after insertion, I am certain that the Mirena has not caused me any depressive problems.

I am also in HRT for early menopause, so not quite the same situation as you. However, my GP was surprised that the test results indicated menopause with low-normal thyroid, as she was certain my problems were thyroid-related.

After a year on Mirena and HRT, which helped massively, I was still exhausted, anxious, and unable to string a sentence together. My thyroid tests showed marginally reduced le els, though still borderline normal.

GP put me on levothyroxine and CBT. Gradually symptoms improved. Thyroid levels rose a little and stayed normal. After about a year I came off thyroxine and continued to feel fine.

According to my GP, depression and exhaustion can suppress thyroid function. Once these problems were dealt with, the thyroid may return to normal function. This seems to have happened with me. It may also be a controversial view, asGP was uncertain whether it would be appropriate to prescribe thyroxine to someone who dud not have clearly underfunctioning results, so requested peer-review from her colleague.

Hope my experience is of some relevNce to you.

lucjam Sat 13-Aug-11 22:29:43

sleeplessinderbyshire - do you know Prof G? I had my first ever mirena coil put in by him, he really advocated it at the time. He operated on me to remove a large ovarian cyst. He is a wonderful, wonderful doctor and very caring man. I visited the Margaret Pyke clinic where he was the head doctor and got lucky that he was on shift when I had my first appointment there. He pushed through my op so I had it done in 3 weeks on the NHS.

Is the book good, does he still advocate the mirena? For me it was wonderful and almost a cure for the flooding I suffered due to endometriosis, I have had 3 in total over 14 years.

EldonAve Sat 13-Aug-11 22:50:15

On the basis of the endo's letter I'd try removing the mirena

You can see a gynae if the flooding issues return

notbloodybranston Sun 14-Aug-11 00:16:17

Just catching up.

I think I am a bit, sort of shocked, by both doctors' mention of depression. I was convinced (note to self - diagnosis through google with no medical training is daft) that it was my thyroid.

DH on other hand is relieved as I have been very angry and snappy with him, and SO forgetful (whereas I am usually the one who can find the lost things and knows the birth dates).

Prettycandles - thank you for sharing your story - it's good to hear all the different experiences. Mirena has been a bit of a miracle for me in the sense that not having long heavy periods is so freeing, and not having pain has been amazing. But I think I will definately have it removed, just to see if things get better. I don't have a personal history of depression, though it is in my family (dad, aunts, sister) and I think I always classed myself as lucky in having skipped that gene and been more like my mum's family in that regard.

I am going to look into antidepressents, because if there isn't an instantaneous mood change when the coil is removed then I've got to find a way of working/parenting/living/getting out of bed and I am going to need some help. I don't know what has caused the depression if it's not this coil - we have a happy life (with my family members there has been obvious triggers) and then in Feb this year I just started being so tired and it has snowballed from there. Ho Hum

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