I had a TT 8 weeks ago due to thyroid cancer and am currently on 150mcg Levo but feel awful. Can anyone have a look at my bloods and tell me what I need to supplement. I’ve been told my tsh should be suppressed to under 1 as I am awaiting RAI however my Endo cannot see me till the end of September and my GP will not increase my Levo without the Endo’s say so. I believe I had Hashimotos prior to the TT but it was never diagnosed I am waiting for a further blood test to check my antibodies as the lab did not do it despite my GP asking for it.
My tsh on the day of the bloods was 22.6 Ft4 13.6 and Ft3 3.9.
Any advice is greatly appreciated.
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Your calcium is low, have you had tingling extremities ? You need to prod your GP to give you some calcium supplement until your parathyroids kick in again.
Dear Bantam12 I should have said I am already on 4000mg of calcium carbonate on a daily basis and that just about gets me to just under the required level. My parathyroids were all re-transplanted and none are working presently. Thank you for your quick response though. X
What has your doctor said about your low calcium levels? There is no vitamin D result, do you know why? There is good evidence to say that good vitamin D levels before and after thyroidectomy aid recovery.
Cancer and Vitamin D deficiency and supplementation for thyroid surgery
Make sure you get enough good fats as it helps to absorb calcium so olive oil, avocado oil, full cream organic milk and ensure you eat calcium rich foods with each meal. Tinned fish with the bones, Kefir. Hopefully your parathyroid glands will slowly recover. Folate is also low so eat plenty of folate rich foods to boost levels. It's not stored in your body so you need to eat some folate every day.
Ring your consultants secretary and explain the problem that your TSH is raised at 22.6 and GP will not prescribe increase until Endo instructs to do so and you cannot see Endo until end of september so the consultant needs to order increase in levothyroxine in the meantime.
You will be commuted to T3 before RAI anyway so it should be fine to increase levothyroxine to suppress TSH and consultant should be able to contact GP. It's not reasonable to leave you suffering and your calcium also needs sorting out quickly.
If you cannot get hold of consultant via secretary then ask your GP to do so and surely medics can talk to each other?????
Thank you for your advice. My endo gets my Gp to check my calcium every week and say that as it has stabilised just under the required level that this is ok for now.... my GP has no idea what is going on and keeps asking me what to do! I’m seeing my oncologist next week as my tumour samples have revealed an aggressive sclerosing variant of thyroid cancer on top of papillary which means I need RAI sooner rather than later. My TT was completed by an ENT surgeon but I am now under an oncologist who will be directing my RAI, however no one appears to communicate effectively and it is left to me to ‘mediate’ between them all. My GP is completely out of the loop. I have complete brain fog and am so fatigued that chasing all these medics is just exhausting, my vocal chord was also damaged during my TT and speaking is still an issue so I’m just finding this all very difficult to explain to all those involved. I am seeing my oncologist next week and will press the Levo, Vit D and calcium issues. Thank you so much for your advice xx
I'm sorry you're having such a bad time and totallly understand how difficult it is to manage the lack of communication between healthcare professionals whilst going through thyroid cancer treatment. Now you are under an oncologist, contact the oncologists secretary and explain how difficult you are finding the lack of joined up care and communication and could the oncologist contact GP and order levo increase as you are suffering unnecessarily. Ask your GP to test your vitamin D level as well as calcium and take a copy of the result to the oncologist so they don't need to repeat the test.
Ask for copies of all tests and create a folder to carry with you to all appointments. Ask the oncologist to clarify who is in charge of co-ordinating your care and ask for a contact telephone number for that person or their secretary.
You also have recourse to the PALS team at the hospital, you could contact them and explain how disjointed your care has been up to now and you need their help to resolve the communication issues as you are too ill to co-ordinate it.
Thank you that is all great advice I’ve just become so used to poor communication and even aftercare in hospital. I was in for 11 days after the TT and the nurses gave me my Levo with a large dose of calcium everyday and despite me trying to explain (with no voice) the counteracting effects they continued to do the same every day!
I am going to get myself that folder and go on a mission to sort this mess out!
I'm so sorry that you've experienced such unprofessional care. It is just irresponsible of the nurses to be unaware of the consequence of dosing calcium and levothyroxine together. Once you are feeling better you really must make a complaint for the sake of future patients. It really is unacceptable. You could find write to the Director of Operations and Nursing.
Have you discovered the Butterfly Thyroid Cancer Trust? They might be able to give some good advice and I think there is a specialist nurse for thyroid cancer although I can't recommend as I haven't contacted the specialist nurse. Keep in touch on this forum though as there's good support here xx
PS, pursue the vitamin D blood test as NHS doesn't seem to be following best global advice on vitamin D supplementation with thyroidectomy patients.
Thank you Nanaedake, my partner has been aghast at the poor service and wants to pursue a complaint. I’ve just been too fatigued to think about it on top of everything else.
I will do it as soon as I can get over this hurdle.
The vitamin D issue will have affected me as in the past I’ve always been deficient I will ask for testing and refer to the guidance you’ve linked to me. I have looked at the Butterfly thyroid cancer Trust website but on the whole have found this site much more informative. I will take another look though.
OK, that's good you've found this site helpful. Keep in touch and we'll try to help as best we can as fellow sufferers or survivors.
At least you know the BTCT exist. I perfectly understand that you are too tired to pursue complaints. The PALS team can help you resolve problems without making a complaint if you need their help.
So few people get diagnosed each year with thyroid cancer that there are no clear protocols in many hospitals and the nursing care and communications are a mess. It's not specific to your location but that doesn't help you, I know.
As your surgery was done by an ENT surgeon, I presume your hospital does not have a specialist thyroid cancer treament facility? ENT departments are often not organised to manage thyroid cancer care and the nurses are not trained in how to care for thyroid cancer patients.
It is unusual for thyroid cancer patients to be in hospital for more than a couple of days so I presume your calcium levels needed monitoring until stable? Most nurses in non-specialist units will never have dealt with longer stay thyroid cancer patients but it's no excuse for poor care. Nurses should take instructions from their superiors and if their superiors don't know what to do, then, it's a training issue.
From my experience, the dosing issue arises because the drugs trolley is timed for a specific run through the ward and there is no second run so all the drugs are administered at the same time irregardless of the type of medication and potential interractions. However, this is unacceptable for thyroid patients where calcium sufficiency is critical and hormone imbalance causes great suffering if levothyroxine is insufficiently absorbed. The hospital need to address this problem and alter their system.
The hospital often lost my results so I found carrying a folder with a copy of all my results in duplicate meant that I could hand a copy to the consultant and keep a copy for myself which seemed to speed things up. I could also refer back to results and scan through them before appointments to prepare the questions I wanted to ask. I wrote my questions down in a notepad before appointments.
I kept a record of thyroid blood test results and noted symptoms and the dose and type of levothyroxine including the batch number and manufacturer's licence number against the result. This sounds over-the-top but not all levothyroxines are the same, you need to find the one that suits you. I found TEVA did not suit me at all. Do not mix levothyroxines or you won't know which one is causing problems.
Could you ask your partner to help you keep your records up to date and keep duplicates of results in preparation for appointments? It's something practical that friends/family can do so they don't feel so helpless.
Deae Nanaedake you are completely right about there not being a specialist thyroid cancer unit where I was treated and the drug trolley/run issue. I was in hospital for so long as I was on 24 hour calcium infusions as my body was not absorbing calcium. I was vomiting 30ish times a day and it was pure guesswork that an ENT Dr thought to check my magnesium levels and found these were insufficient hence my lack of calcium absorption. Following magnesium infusions the calcium started to absorb and the dosage was reduced which in turn limited the nausea/vomiting.
I was on teva Levo but just yesterday picked up my prescription and have been given almus Levo... I will monitor the batch and etc as you have described.
I will involve my partner etc as you have described with the records it will help him feel less helpless.
Everyone is different but I've found Almus which is Actavis Levothyroxine packaged by Almus is fine. Lots of people have had trouble with TEVA, you can see the comments on this forum but some people find TEVA is fine for them. Personally, I would avoid it to start with until you've found the dose that is right for you. Insist that the pharmacist supplies the same brand every refill.
Just to note that in the links I gave you the vitamin D measurements are USA units not UK units. In the UK vitamin D is measured in nmol/L and so to equate the levels you will need to convert from US ng/mL to UK nmol/L , units of measurement.
When you have your vitamin D level, post here for best advice from experienced people.
I take some magnesium every day now as a maintenance along with vitamin D3 and K2-MK7. I also eat 6 prunes a day for the boron which bones need. I'm so sorry you've had such a bad time there's no excuse.
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