Tertiary hypothyroidism suspected after a craniotomy for a colloid cyst on the third ventricle

I have a daughter who had a craniotomy for a colloid cyst in her brain two years ago, and since then has had health problems like weight gain, swelling, constipation, sore legs, fatigue etc. We think it is tertiary hypothyroidism, and the endos are putting her on thyroxine. Has anyone else had similar problems and have they any suggestions? Her TSH is .89, T4 11.5. No one seems to have much confidence in sorting it out . Does anyone know of a consultant who they could recommend?

15 Replies

  • Angiegt,

    Your daughter's symptoms are due to hypothyroidism. Once your daughter is optimally medicated and her status is 'euthyroid' her hypothyroid symptoms should resolve. Hypothyroidism means the patient lacks the ability to produce sufficient thyroid hormone. Primary hypothyroidism is due to the thyroid gland failing. Secondary and tertiary hypothyroid patients have a healthy thyroid gland but it is not receiving stimulation due to pituitary or hypothalmic dysfunction.

    TSH should be ignored in patients with secondary and tertiary hypothyroidism and FT4 and FT3 be used to assess whether adequate Levothyroxine dose is prescribed.


  • Many thanks for your reply Clutter. Is thyroxine likely to be the answer then, or should she be put on T3 or T4?

  • Angiegt,

    Thyroxine is T4 and is the usual therapy for hypothyroidism. It isn't a quick fix and is likely to take a few months for your daughter to start feeling better.

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

    Your daughter should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after the blood draw.

  • Thank you for the info. I will let my daughter know.

  • Levothyroxine is synthetic T4.

    A properly stimulated and healthy thyroid will produce T4 and some T3. T4 is a storage hormone with little or no activity in its own right. T3 is the active hormone which makes the difference between feeling well, over-active, or under-active.

    In a healthy body T4 is sent around the body via the bloodstream to all the organs including the brain, the liver, kidneys, the skin, muscles etc. Peripheral tissues convert T4 into T3 in the place where it is needed.

    As long as someone is a good converter most people who need levothyroxine feel perfectly well.

    It is the un-diagnosed and the poor converters who end up on sites like this one.

    Edit : Oops, just realised this is an old thread. Oh well...

  • Thanks humanbean. I'm always interested in any info regarding this. I guess my daughter may be a poor converter.

  • If your daughter gets testing done under the right circumstances which includes all the necessary thyroid measures then poor conversion should show up.

    Low nutrients are common in people with low thyroid hormones too, and they make people feel awful.

    If you want to get proper testing then it can be done privately :


    Blood can be tested from either a finger-prick sample (microtainer) or a full blood sample from a vein like a phlebotomist would do (vacutainer sample - which costs money unless you know a nurse to take blood for you)



  • Thanks humnbean. sounds like a good idea.

  • Make sure blood is taken first thing, before 9am in the morning, while fasting (except for water).

    If your daughter is taking thyroid meds, then the dose the day before should be taken 24 hours before the test. On the day of the test meds shouldn't be taken until after the blood has been taken.

  • just wondering why so many people report negative results-of their symptoms,either no results at best and feel worse on levo even at optimal doses yet it is still ( by the establishment) being pushed/prescribed as the best treatment for hypothyroid clients-- when will endos fess up to this nightmare?

  • Sky1hypothyroid,

    The majority of patients do very well on Levothyroxine once they are optimally medicated but an estimated 15-20% may not do so well and may need the addition of T3 or even NDT, neither of which are readily prescribed in the UK.

  • I had a cranio Nov 2013 to remove a Colloid cyst,realised on hospital 6 days later ,back in hospital week later 2 hrs away from coma had to stay 2WEEKS had a vp shunt placed.4 months later shunt disconnected had it repaired 4 days later back in hospital staff infection in brain.Every day is a struggle for me!! I've gained weight,extremely tired and neck pain,weakness in arms,legs but I get no disability.

  • You sound as though you have had a really tough time with your Colloid cyst. I am so sorry. My daughter had a craniotomy in UCLH in July 14 and it all seemed to go very well. A tiny fraction was left as it was so entwined in her veins, which I believe can regrow and eventually need another op, but she was incredibly lucky in that she went to see a healer and when she returned for her next MRI the neurosurgeon could not believe that there was no sign of the cyst at all. However immediately after her op she felt more and more inflamed and has had weight increase through edema and neck and leg pain which no one seems able to sort.

    Where did you have your op done? Are you able to work now? I know the shunts can be very problematical. Have they diagnosed you with secondary hypothyroidism and if so, do they know if its the pituitary or the hypothalamus which is at fault?

  • I had my surgeries at University of Tennessee in Knoxville Tenn. I'm not working well I try to do what I can around the house . I have a 13 yr old daughter trying to keep her in line Lol!! One day at a time !!! I have an appt. to have MRI to check on the shunt but no one ever mentions secondary Hypothyroidism I guess I'll do my own research.I feel like I'm on my own!! They got their money !!

  • Melissafall, have you had blood tests done? Would be interesting to see if they are similar to my daughters. Her TSH and T4 are both low. I hope your MRI shows the shunt is working. Did you have severe hydrocephalus before the op?

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