Brand of thyroxine for people with thyroid cancer

[Alex_p]

Hi all, I had my thyroid removed 2 years ago because of thyroid cancer. I haven’t had any bad reactions until 6 months ago when I started to have anxiety often, I am tired all the time and I feel bloated. My blood tests are within range (I did them last in July) so I’m thinking it might be related to the type of thyroxine I’m taking. I tried Teva but it gave me a lot of other symptoms then moved to Mercury pharma (but again some weird symptoms). I’m now taking Accord which seem the best so far, but some symptoms still persist. I read that for people that had their thyroid removed the same brand of thyroxine as others who only have hypo might not work. Which brand/type of throxine do you guys take? I read about Synthroid, do you know if it’s any good?

[Nanaedake]

What were your thyroid test results? Have you got copies you can post here? Have you had vitamin levels tested including vit D, calcium, folate and ferritin and B12?

Accord which used to be Actavis brand is generally well tolerated so there's likely another explanation for your symptoms. This is just based on my experience of living with surgery induced hypothyroidism and over 10 years experience on levothyroxine.

[Alex_p in reply to Nanaedake]

Thank you so much for taking the time to reply. I was just looking for the blood test results.Here they are:

Serum parathyroid hormone - 8.7 (15.00 - 65.00ng/L)

Serum free T3 level - 4 (3.10 - 6.80pmol/L)

Serum free T4 level - 17.1 (12.00 - 22.00pmol/L)

Serum TSH level - 0.03 (0.27 - 4.20miu/L)

Serum alkaline phosphatase - 30 (35.00 - 104.00u/L)

Blood ionised calcium level - 2.02mmol/L ( 2.15 - 2.50mmol/L)

Serum adjusted calcium conc - 1.98mmol/L (2.15 - 2.60mmol/L)

Some mentions:

- I'm under suppressive dose of thyroxine (125 micrograms) and will be for 5 years after the operation

- during the operation something happened to one of the parathyroid glands, which makes my PTH level be low (which means I need to take calcium supplements) - I've had issues with the calcium level which keeps rising and dropping, but I know the symptoms from that now

- I used to take Euthyrox which was fine, didn't give me any symptoms

- I'm currently taking 100 micrograms thyroxine from Accord and 25 micrograms from Mercury pharma (because Accord only does 50 and 100) - should I try taking 50 micrograms from Accord and cut them in half?

- I haven't been tested for any vitamin levels, the GP doesn't seem to find it necessary to test them; I've had issues with ferritine levels in the past (I was a bit anaemic)

[Nanaedake in reply to Alex_p]

Very unhelpful of GP not to test vitamin levels in my opinion. How recent are the above results? IF more than 6 months ago then get them rechecked. If you've had issues with ferritin, I would get a new test to check it and better still ask for a full iron panel to include tibc which will give a fuller picture of iron status. B12, folate also important. You need them all to be good to utilise levothyroxine effectively.

I presume you have vit D levels checked? Have you got a result? I would ask for calcium and vit D levels to be rechecked.

For good bone health, I take K2-MK7 100mcg daily. The western diet does not include enough K2-MK7 but is more available in East Asian cultures. Also magnesium helps to activate vit D so I use a magnesium spay daily. I'm not a medical person so this is just my experience but I've improved bone density with diet and exercise. I have lost some parathyroid glands but do not have low PTH so perhaps low PTH might be lack of vit D? Definitely get it checked along with the others suggested.

Ask for a DEXA scan to check bone density. GP can refer you. If GP won't cooperate, get a different one!

If GP won't do vitamin levels then contact your consultant to find out if he/she can organise it. Or get referred to a thyroid specialist endocrinologist. Most endocrinologists are diabetic specialists and know diddly squat about thyroid cancer and thyroid disease. Even if their profile say they have 'an interest' in thyroid, this is not a thyroid specialist so do your homework. Get a thyroid cancer specialist even if you have to travel to see them.

If all else fails, get your own blood tests done via a reliable online lab. Labs are listed on Thyroid UKs website. GP may not accept results, however if any indices are lower or higher than lab range it should prompt them to do their own investigations.

Let us know how you get on and what happens.

On the question of levothyroxine tablets, then yes, it's recommended to stay on one brand. You can cut tablets with a pill cutter or dose alternate days. So to achieve 125mcg dose get your Accord in 50mcg tablets and dose 100 one day and then 150mcgs the next day to average 125mcgs. Sorry (all thumbs, edited numbers and now correct).

Levothyroxine has a 7 day half life so its perfectly fine to dose that way. I do mine that way without problems. Best to stay on one brand that suits you to reduce variable factors. If you have problems with a batch of tablets you're more likely to identify the problem.

[loveforlife]

I took activas before they were taken over by accord. I was quite well on activas but I now seem to be having problems with accord but I dont know why, fast pulse but very cold most of the time. The internet says they are supposed to be the same but I dont think they are.

[Nanaedake in reply to loveforlife]

I didn't see your response. If you want to bring your post to someone's attention you can reply to their post using the blue reply button. That way they get a notification. Hope that helps?

Some people on Thyroid UK forum have reported problems with the change over to Accord from Actavis. Yes the stated ingredients are the same, however, that doesn't mean there have been no changes in manufacturing methods, solvents used, storage and sourcing of raw materials, all of which may effect the efficacy or potency of the tablets.

If you are having problems, please report it through the yellow card scheme. I'll find the link and add it to this post in a minute.

Here you are

yellowcard.mhra.gov.uk/

If you are on suppressive doses of levothyroxine you might be more susceptible to changes or variations in levothyroxine absorption or bioavailability than people who take levothyroxine for autoimmune thyroid disease resulting in thyroid failure and hypothyroidism. GPs will not know whether this is the case or not as most doctors never see anyone with thyroid cancer in their career and you'll likely be the first they've seen.

Low vitamin levels can cause problems with utilisation of levothyroxine. Have you had vitamin levels tested? If so, post them here for suggestions to get them to optimal levels. Vit D, B12, folate, ferritin and calcium. Gut problems can also cause problems with levothyroxine absorption. All of these factors are critical for best performance after thyroidectomy.

[loveforlife in reply to Nanaedake]

Hi

Thank you for your reply. I have had my vitamins and iron tested and all are well within the range. I am gluten free and have been for several years. I am following a diet that is supposed to help the gut repair and am having fermented yoghurt. I think I need to tinker with the medication as it is clearly different..

[Thyop57]

I had my thyroid removed 18mths ago due to thyroid cancer and have been on levothyroxine since then. I started on 100mg and then increased to 125mg. Not been too bad although have had headaches and energy levels are up and down. I've also read that not each tablet had exactly the same amount in it so I'm wondering if this could account for the fluctuations. I've heard that Synthroid doesn't have this issue but I'd more expensive then Levo meaning the NHS in the UK usually used Levothyroxine.

[loveforlife in reply to Thyop57]

I have just been reading that Synthroid is a lot more expensive than Levo so I suppose they will not use it.

[Nanaedake in reply to Thyop57]

The MHRA are the regulators for human medicines in the UK. They monitor the quality of medicines. Synthroid is not available in the UK. Levothyroxine is supposed to be equivalent in different brands. However, they do contain different fillers that make up the tablets although the active ingredients are the same. The different fillers may affect how an individual person absorbs the medicine and some people can be allergic to specific ingredients in any type of medicine.

The general advice is to choose a levothyroxine that suits you and stick with it. Not everyone finds they are interchangeable.

[Thyop57 in reply to Nanaedake]

Thanks for your reply - I'm going to continue keeping a symptom diary and record medication and then see how I get on .

[Alex_p in reply to Nanaedake]

Thanks for replying. I’ve tried levothyroxine from Teva, Mercury pharma and Accord until now (actually it was 100 mcg Accord and 25 mcg Mercury pharma). I’ll try to see if I can get 50 mcg Accord so that I don’t have to combine brands, as I’m getting some annoying symptoms from Mercury, such as bloating.Do you know if there is Euthyrox (from Merck) in the UK?

[Nanaedake in reply to Alex_p]

Thyroid UK have some goid information on brands of levothyroxine available in the UK. You could search the forum for the most up to date info. As far as I know Euthyrox is not available. Is that an Australian brand?

[Nanaedake in reply to Alex_p]

I have found Accord the most reliable but we all respond differently.

It's a common problem to have stomach problems and bloating when hypothyroid. I've found changing my diet has helped. Fermented foods seem to be good. I've also gone gluten free. It might not be the whole solution though.