So confused!

Hi everyone. I have b12 injections every 2-3 months and take 100mg thyroxine daily. My consultant has advised a hysterectomy (Inc ovaries) and I have to make decision by next week. He recommended hrt immediately. I'm scared as there's lots of endo on and around bowel fusing it with womb - am sure you all get the picture! I'm not scared of op or removal of womb & ovaries, I'm terrified of my bowel being damaged. I'm also scared of how I will be emotionally post op. I suffer with depression and am worried how an early menopause will affect me - I'm 39. I do have children, through the wonders of modern medicine! This is also a major concern as we have lots of milestones/events/important school dates this year.

7 Replies

  • Just wondering if your thyroid medication is optimal. By that I do not mean what the doctors call "normal". I mean really at a level to help your gynae problems. I had to have a hysterectomy due to fibroids but I now know these can be caused by thyroid out of balance and it was a few years later that my thyroid problem manifested itself. I shall never know whether there was a connection. If you can very quickly get hold of your most recent thyroid blood tests and post here, members can advise. In any event why is your consultant rushing you? You need time to explore your options, or is it life threatening? Mine was unfortunately, so I cannot regret the speed of it!

    I think I would also Google your gynae symptoms plus underactive thyroid and see what studies you might find. Good luck whatever you decide.

  • Welcome to our forum,

    Hennerton talks sense. I will give you a link.

    If you've been having severe bleeding I would hold off on any op till your thyroid medication is at an optimal level (i.e. one that makes your body feel completely normal) and you feel well.

    I see you have just joined but haven't given any info re your history re hypothyroidism. i.e. how long before you were diagnosed. When diagnosed. Any other problems.

    A dysfunction of the thyroid gland can cause many, many symptoms and doctors are apt to put them in separate compartments but they are usually under the umbrella of 'hypothyroidism' so are definitely connected. One being our monthly cylcle.

    Don't be rushed into any ops before you've had time to consider. If you've recently been diagnosed, thyroid hormones may rectify your condition when you get to an optimum level. Please read this link.

    Women also get polycystic ovaries and in Japan a 21 year old woman had multiple PCOS but they found they all disappeared when she was given thyroid hormones (not immediately of course).

    So the first thing you must do is to get a new blood test from the GP, ask for TSH, T4, T3, Free T4 and Free T3 (the frees are important). If you've had a recent one ask for a copy of that one.Most doctors will only do the first two but there's no harm in asking. 100mcg of levo is an average dose and some of us need much higher but the GPs know little about how to treat the thyroid gland and believe if we reach and 'in range' level they don't increase levo any more and our symptoms continue. But we need more if we still have symptoms.

    If you've not also had a Vit D, iron, ferritin and folate ask for these to be done too as we are usually deficient.

    Have a blood test as early as possible - don't take levo until afterwards as it skews the results. (the day before put your levo in a different place so that will remind you not to take it and put reminder the day before on your mobile). Get a print-out of your results from the surgery for your own records with the ranges and post on a new question for comments.

    You take levo with 1 glass of water first thing and dont eat for around 1 hour as food can interfere with the uptake of levo. Take vitamin C too as it helps in the conversion of T4 to T3. T3 is the. active hormone we need in our receptor cells. Other medication should be taken 4 hours apart of levo so it doesn't interfere.

  • Hi. Been taking thyroxine for approx 9 years. My bloods are always within range but I upped my dose few years back to 100mg per day. I still feel awful, tired, depressed etc etc. For years I was given anti- depressants. UnderactiveThyroid was only diagnosed when I couldnt loose weight and paid privately to join "sure slim". They blood test before diet. I was also at one point taking folate b12 etc but my body didn't absorb vits. Levels got lower instead of higher that's why I started b12 jabs. I've never seen endocrinologist. Not sure if I should.

  • Vicky I think you've become one of the many whose doctors don't know how best to treat people with a dysfunctional thyroid gland.

    The immediate thing is for you to ask your surgery (we all do this now) for a print-out of your latest thyroid gland blood test results, with the ranges and post on a new question for comments. If you haven't had a recent one make an appointment to see the doctor and tell him you want a Full Thyroid Function Test, as you are determined to try to recover your health. This would include the following:

    TSH, T4, T3, Free T4 and Free T3 (we only usually get the TSH done and maybe T4 but nothing else). Vitamin B12, Vit D, iron, ferritin and folate. Tell him it's your New Year's Resolution to try get much better.

    The T3/FT3 is important as it is T3 which gives us life. T4, otherwise known as levothyroxine sometimes doesn't convert in some people to sufficient T3.

    Make your appointment for your blood test as early as possible and don't take levothyroxine before it. approx 24 hours between levo and blood test is best.

    First, many GPs/endocrinologists mistakenly believe that 'just prescribe levothyroxine only' and when the patient's blood levels are 'in range' that that is sufficient thyroid hormones so anything else the patient complains of is due to 'some other cause' and treat that clinical symptom (because that's what it is) with anything other than extra thyroid hormones. We might be thought of as hypochondriacs as we usually have a myriad of complaints.

    We have to read and learn as much as we can ourselves in order to get better. I was diagnosed,finally, 7 years ago and had horrible experience with levothyroxine alone but as soon as some T3 was added I felt a great improvement. T3 is the active hormone and it is needed in the billions of receptor cells in our body for us to function normally. I now take T3 alone and have normal health. Some on T4/T3 feel fine too.

    T3 is also used by psychiatrists for depression and anti-depressants also reduce the serotonin required by the brain. So ask your GP to prescribe 20mcg of T3 and reduce levothyroxine by 50mcg. Email and ask for a copy of the Pulse Online article and highlight question 6 if you're GP is reluctant to add T3. Dr Toft says 10mcg of T3 for a 50mcg reduction but that is now out of date, it should be 20mcg for 50mcg T4. This para also tells the GP we can have a low or suppressed TSH if it makes us feel well.

    We can improve our thyroid health. If we don't have sufficient thyroid hormones we cannot get well.

    Take levothyroxine first thing with a glass of water and wait around 1 hour before breakfast. Food can interfere with the uptake. If you take Vitamin C with T4 it can help with the conversion to T3.


  • What's with the rush? You make a decision in your own time, having weighed up the pros And cons. What if you decide no.... Is the chance of. Hysterectomy never going to be given again? Of course it is. The only reason to rush is to fit in with the surgeons holiday schedules..

    I have no children and I had a hysterectomy at 39 though I did not have endometriosis. I never regretted it and felt so much better afterwards, though I would have been very worried about losing my ovaries. Of course I realise all cases are very different..... And it was years later that I realised my problems might have been solved by a thyroid med increase..

    You are on a fairly moderate amount of thyroid hormones, what are your blood tests looking like? Depression and anxiety both linked to a dose which is too low.

    Xx g

  • My daughter and 19 yr old granddaughter face the same dilemma

    For my daughter its easier because she has 4 children and every month flares her back problem up as well

    its when endo is wrapped around the bladder as it is for my 19yr old granddaughter that the real fear of damage comesw because they have great difficulty removing it there

  • Don't be pushed into a decision. It is your body, and nobody should be pushed into making such a huge, life-altering step in a hurry.

    If you do decide to go ahead, make sure that the person doing the surgery is actually a gynaecological surgeon and not just a general surgeon. Also make it clear that a colo-rectal surgeon must be available to deal with endometriosis and adhesions affecting your bowel. If the endometriosis is also affecting your bladder then you need somebody properly qualified to deal with that too.

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