Feeling rubbish and in need of advice

[LJones2703]

I’ve attached a picture of my blood results. Since total thyroidectomy in August I’ve been so ill! I spent 7 weeks in hospital on constant calcium IV infusion due to hungry bone syndrome. And I am still Struggling to improve and maintain calcium levels and improve thyroid levels. I’m taking 150mcg levothyroxine increased from 125mcg just a couple of days ago, 4mg alfacalcidol, Sandocal 1000 2 three times a day and just been started on 210mg ferrous fumerate twice a day. I’m putting on weight, my bones hurt, I have muscle twitching, pins and needles and I just generally feel awful. I have 5 children and I need to get my life back. I have to be honest and I have struggled with timings of medications thyroxine has to be 3 hours away from calcium and both 2 hours from iron, so I don’t have a great routine with taking the meds at specific times but I do take all my medications every day. I’ve just had another set of bloods so will update when I get these results. The consultant wanted to admit me for infusion but this is just not possible right now.

[Clutter]

LJones,

You were very undermedicated to have TSH 42.4 with FT4 below range. 150mcg probably won't be sufficient so make sure you have a follow up thyroid test 6 weeks after increasing dose.

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, magnesium and oestrogen.

If you've been taking Levothyroxine close to iron and calcium it will have reduced Levothyroxine absorption. Levothyroxine can be taken any time of day or night so if it is easier you can take it at bedtime. Others set the alarm an hour before they need to rise and take Levothyroxine so they can have breakfast when they get up. If you wake during the night to use the bathroom can be a good time to take Levothyroxine.

Calcium is deficient and phosphate high which suggests your calcium dose is insufficient. Low calcium is probably causing the muscle twitching.

Ferritin is deficient which indicates iron deficiency anaemia. Usual treatment is 3 x 210mcg Ferrous Fumarate daily and taking each tablet with 1,000mg vitamin C will aid absorption and minimise constipation. Could you have an iron infusion instead of tablets to avoid interaction with calcium and Levothyroxine? I believe that an iron infusion is done as an outpatient appointment.

[LJones2703 in reply to Clutter]

I’ve been taking the iron 2 hours after thyroxine and then the calcium 2 hours after that. If it has to be 4 hours between the iron then 2 hours from the iron to take the calcium I feel there’s not enough hours in the day to take all my meds, it’s a nightmare. I have a 1 and 2 year old both of whom wake through the night so I might start using that time to take meds too. I’m going to start taking the vitamin C, thank you for your advice

[marram]

I always found that taking Levothyroxine last thing at night just as I settle down to sleep, the best way to keep it away from other medication, it leaves the day free to plan the rest. It had the added advantage that it seemed to work better taking it at night. Research supports this, yet they still tell people to take it when they wake!

Supplements , calcium etc can then be taken with breakfast, or when you wake, or with lunch, whatever suits.

Marie xxxxx

[shaws Administrator in reply to marram]

If taking a bedtime dose and having a blood test next morning, you have to miss night dose and take after morning blood test and you can take bedtime dose as usual the same day.

[LJones2703 in reply to marram]

My consultant did advise to take my thyroxine at night but I kept forgetting and missing doses it just didn’t seem to work for me

[SlowDragon Administrator in reply to LJones2703]

Get a weekly pill dispenser and keep it by the bed. Helps remember to take Levo as you go to bed

[cjrsquared]

Your calcium is seriously low, I appreciate that with 5 children you don’t want to go into hospital but you are at risk of a seizure with those levels and that would not be good for you or the children. As Clutter has also said your TSH is much too high and your ft4 too low, you must feel dreadful. I hope your levels improve soon.

[shaws Administrator]

I am really sorry you are struggling so much after having a thyroidectomy.

It's bad enough when we have a thyroid gland never mind coping withuot one altogether.

The very least your Endocrinologist/doctor can do is prescribe a combination dose of T4/T3 as you have no thyroid gland.

Some people do not convert levothyroxine into sufficient T3. and it is T3 only which is required in all of our T3 receptor cells. Levothyroxine (T4) is inactive and has to convert and rarely do the doctors test Free T4 and Free T3 to see exactly how the patient is converting

They have also stopped prescribing T3 but I think they should make exceptions for those without a thyroid gland.

If not you can source your own T3 - our Researchers/scientists have proven that a combination of T3/T4 is required by many hypothyroid patients.

To source your own T3 you'd have to put up a new post and ask for a Private Message to be sent to you of where to source as no information is permitted on the forum.

Ask GP to test B12, Vit D, iron, ferritin and folate as most are deficient in these and everything has to be optimum in order for us to feel better.

[LJones2703]

Thank you all so much for your replies. I’m due back to the hospital for more bloods and to see my consultant tomorrow so I’ve got something to go on. I’m going to ask the consultant to check the other levels mentioned too. Thank you all so much