An update on my husbands thyroid problem

[Nee22]

We had an appointment today with the endocrinologist. They have taken bloods but in the mean time we have made our own discovery.

Probaby should explain more that he has a benign tumour on his pituitary gland. For this he takes 125 levothyroxine and 20 hydrocortisone. The tumour was a side effect of immunotherapy cancer treatment ipilumimab

He has recently been very run down and showing signs of b12 and iron deficiency. The doctors put him on ferrous sulphate which he has been taking every morning with his tablets.

It has now been discovered that the iron tablet have been stoping the absorption of his levothyroxine. That is why he has been slowly going down hill.

Luckily we have now picked up on this. Now he has adjusted the way he takes his meds we are hopefully looking forward to him getting back to normal.

The instructions on the iron tablets do not mention any reaction to levothyroxine, however the internet is quite informative about it. Should the pharmacist not have mentioned it? They provide all his meds and know his history?

Thank to everyone for all their help and support with this.

I will let you know how he is in a few weeks. Fingers crossed.

[SeasideSusie Remembering]

One would hope the pharmacist would mention that iron should be taken four hours away from thyroid meds, but unfortunately we can't rely on it. Iron will also affect the absorption of other meds and supplements, so a minimum of two hours should be left for those, so he should change the timing of his tablets and keep iron well away from anything else.

Iron should be taken with 1000mg Vit C to aid absorption and help prevent constipation.

Also, just in case other supplements include Vit D, magnesium and/or calcium, these also require a four hour gap from Levo.

Is anything being done about the B12 deficiency? Was Folate also checked? B12 and folate work together.

[helvella in reply to SeasideSusie]

At least one Patient Information Leaflet for levothyroxine in the UK says:

if you take iron supplements, you should take levothyroxine and your iron supplement at least 4-5 hours apart.

It really is sensible for us all to read our PILs. It is even more sensible for a doctor who is prescribing both the levothyroxine and the iron supplement to advise us.

[ Edit ] And any pharmacist who knows what is being prescribed.

It is curious how half the time pharmacists are telling us to go for medicine reviews, offering themselves as founts of knowledge, etc. The other half they are doling out medicines without raising a murmur about interactions.

[SeasideSusie Remembering in reply to helvella]

It's surprising what they don't know actually. Last year I saw a lung consultant who said I should have a second inhaler added, but that i didn't need a steroid inhaler as I wasn't a candidate for a steroid one, and that he would look for a suitable long acting non steroid bronchodilator and write to my GP to prescribe it. I got a copy of the letter, saw what he suggested and googled it. It was a steroid inhaler!

I rang the British Lung Foundation and asked if there was such a thing as a long acting non steroid inhaler and was immediately given the name of one.

I went to my GP for the prescription, he is the one in the surgery who has a special interest in lungs. We discussed the letter and I pointed out that the inhaler mentioned in the consultant's letter was a steroid one. He looked it up and agreed. I told him that I had asked the BLF and what they suggested. He looked that one up and agreed to prescribe it.

It surprised me that a lung consultant didn't know the one he prescribed was exactly what he told me I didn't need.

He also prescribed me Ciprofloxacin at the time. I knew there could be severe, life changing side effects with this antibiotic and voiced my concerns. I was told no, it's absolutely fine. Guess who got 'floxed'?

Just two reasons I have so little faith in doctors now, even at the highest level!

[puncturedbicycle in reply to SeasideSusie]

Bleurgh, sad but true. Sorry to hear that all happened to you. It is very discouraging.

[Nee22 in reply to SeasideSusie]

Hi

Thank you for your response.

Before I start let me tell you it is now 8.15 in the morning and my husband is awake feeling so much better just by separating his meds like that. Before today he wouldn't get up before mid day and that was because I would moan at him. He would then spend the day in chair nodding off.

His serum folate is 5.7 (target 3-20) and b12 204 (target 180-900)

Because he is within range I didn't expect anything from the doctor as he reported that all was normal except his iron. Which he prescribed ferrous sulphate for.

I have put him on sublingual liquid 1200 b12 once a day.

I will get him some vit c. How long will it be before we see any improvement in his b12 and iron levels?

I need to tell you all how grateful for this website.

As you may know from previous posts my husband has terminal cancer and every day is precious and we like him to be feeling the best he can. This website has been a godsend. Without it he could probably still be taking his iron and levothyroxine together and getting worse and worse.

Big thanks to all

[SeasideSusie Remembering in reply to Nee22]

Nee22 I have been where you are now with my dear late hubby. Make every day count (((hugs)))

I'm pleased that you're husband has felt the benefit so soon.

With his B12 level at 204 I would suggest the 5000mcg strength sublingual methylcobalamin to start (or increase the liquid) then after 2-3 months go back to the lower dose.

When taking B12, we need a B Complex to balance all the B vits. Something containing 400,mcg methylfolate will help raise his low Folate level. A good one is Thorne Basic B, or if a liquid is preferred over a capsule then look at Metabolics B Complex liquid.

I couldn't get on with iron supplements as they made my constipation much worse, so I started eating liver once a week and that had made a big difference so that's something you might want to think about.

[Nee22 in reply to SeasideSusie]

Hi,

So sorry to hear your sad news and thank you for your kind words and suggestions of help.

He loves liver funnily enough but I think it is the absorption bit that is causing the problem. He takes metformin and hydrocortisone which I understand can cause a problem.

We will speak with gp as he is normally very good and see if they will give him some b12 injections. In the mean time I will keep him on the stuff he is already taking and get him to double up and I will see about getting that other stuff you mentioned with folate.

I am not sure now if he is feeing benefit of b12 or the levothyroxine at the moment. To be honest I don't care as long as he happy. We can only do what we can and I want to make sure it is the best that I can.

Thanks again

[Hidden]

Nee22 I wish you and your family the very best, the strength to cope with all that comes your way and the peace to be able to accept it all. I think it would also help him feel better if he supplemented with methyl folate and probably vit D, unless he is able to get at least 20-30 mins of sun on bare skin? Maybe not at this time of year. Magnesium, zinc and selenium is also useful xx

[Nee22 in reply to Hidden]

Hi,

Thank you for your response and best wishes. It is hard but worth it. He has been going now since 2007 when it spread to his lung and became secondary stag 4 melanoma, they gave him 3-6 months then. We have had more scares and problems than you would never imagine but he has always pulled through. Most of his worries now are results of treatments and trials. There is currently nothing further they can do (unless another trial comes up) and he is under the hospice for pain.

I give him the normal bits, cinnamon, green tea, ginger, curcumin etc. He has magnesium and vit d when we don't manage to get out anywhere. He also takes modified citrus pectin (mcp) which he has taken from day one. Very interesting tablet and becoming more familiar as time has gone by. Google it, lots of reading. Interestingly enough I have just found out they are using it on a stage 3 trial in Israel. I do think something is keeping him alive so maybe that is it.

I am going to look into the folate

Thanks again for your interest

[Hidden in reply to Nee22]

My cousin was diagnosed with a secondary brain tumour after suddenly having balance problems, slurred speech and hallucinations. It was this size of a fist! They found the primary, a stage 4 non small cell adenocarcinoma in the bottom of his left lower lobe of lung. No symptoms, no cough, had never smoked. They think he had had it 4 years. He lives in NYC and helped out at 911 rescue and clearance - so maybe. He's had brain tumour removed in Dec, was up walking and talking straight away!! He had his lower lung removed in January and started Gene therapy and is working and going to the gym but I worry he is doing too much too soon. His doctor said they only continued with surgery and treatment because he was so fit. He's only in his mid 40s. Life isn't fair is it.

[Nee22 in reply to Hidden]

That is very sad, it seems more so when they are good people. However find the positive that he was so fit and they were able to operate.

I agree life is so unfair.

My husband was also lucky that he had a cold with some pneumonia. After a chest X-ray they found his tumour. No symptoms either. When they diagnosed it he had actually cycled to his hospital appointment which was just over 8 miles away. I always thank god he had a touch of pneumonia which led to discovering his lung cancer. Apparently he would have been dead in 3 months.

I think your cousin has to do what he feels is right and if that means he wants to work and go to the gym then he needs that. I don't think we understand what it would do to us if we were faced with a terrible disease so I try to respect my husbands wishes (within reason!!) and let him do what he feels is right. It kills me sometimes because if I had my way I would wrap him up in cotton wool. He still wants to feel like a man.

Good luck and very best wishes to you all