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?
Brand of thyroxine for people with th... - Thyroid Cancer Su...
Brand of thyroxine for people with thyroid cancer
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.
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)
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.
Hi
The new regime is that like you are LOW. RISK Papillary cancer you don't need to be in suppression.
Both surgeon and I follow top surgeon and clinic in USA Mr Gary Clayman's direction. If you are low risk keep inside with TSH at 1.5 - 2.5. the low end but not lowest end of normal which is 0.6.
Your T3 could be better. than 4. by raising your selemium, brazil nuts, sardines and beef liver. I raised mine at 3.4 (our normal level is from 3.9 yo 4.7. Feel more energy.
Your T4 is OK mine is up at 22, 23,or 24.
Did you have RAI Treatment after your Thyroidectomy? Any lymph Nodes removed with cancer found in them.
I refused RAI treatment - it can kill off your parathyroid.
I also refused to be in suppression. I got down to 0.7. But it was the thyroid cancer which caused the AF which caused the Stroke Embollic. If I hadn't been in hospital and had the carotid arteries scanned I could have had the papillary cancer spread - as it was he took 12 lymphs and 2 were affected when examined after.
I wonder why they have put a 5 year time to stay in suppression? There's a case of an anaesthetic in Northland whose cancer has come back after 15 years. Lunkily papillary cancer grows at a pace of 1mm per year.
Read all about RAI Treatment. It's not good. Radio Active Iodine.
The PET scan is Radioatcive Iodine Tracer in sugar! My dose infusion was flown from Australia to Wellington to Auckland to stop at Whangarei. My procedure was delayed 100 minutes as the plane from Wellington was delayed by mist and fog!
Make sure that you have a Thyroglubin Serum test - under 1 no indication of cancer 1-2 suspected ? and over 10 indication that cancer has returned. Also have the Thyroglubin Antibodies done. My lAst test 15.
If cancer was found in lymph nodes you should have a Ultra-sound Neck Scan continued for life.
My surgeon put through a blue dye 1 hour up to going into theatre. It showed him the many veins etc that get in the way.
If you can read Gary Clayman's book. ATLAS OF HEAD AND NECK. I did and I read my operation after the operation. Interesting. It was borrowed from a University Library.
cherio JOY
So far the cancer has not returned. Yes, I’ve done RAI about 2 months after my surgery and I don’t regret it, I was told to do it to neutralize cancer lingering in the remaining thyroid tissue (although I didn’t have a lot of thyroid left). I was told to keep the TSH suppressed for 5 years so that the cancer doesn’t return, after 5 years it’s considered gone for good.
I’ve worked on bringing my FT3 up by adding some T3 and by making sure my vitamins and minerals are good (B12 and ferritin were especially low). For all this time I’ve had the TSH suppressed and have noticed no issues because of that. I know that the risk of heart disease increases when FT3 and FT4 are out of bounds (so that includes when they are too low). I feel that my hormones are now in harmony and don’t feel any adverse effects coming from them. But that’s very specific to each person, my optimal may not be yours.
Hi
Um, nothing left of your thyroid?
What does that mean?
There are 100 lymph nodes in total. 50 each side of the thyroid. Also there is some thyroid material wound around the thyroid. The surgeon tries to get it all off.
Then there is a bed at the bottom of the lymph nodes and where the carotid arteries, jugular veins meet in the thoracic region.
Did you have papillary cancer. Was it a carcinoma in one or both lobes.
Your parathyroid is also made up of the same tissue so with RAI given too much it could damage voice box, oesophagus or parathyroid. It can give you leukaemia. (Cancer of the blood).
My anaesthetic showed me his scar from thyroidectomy plus. He had RAI twice. His was seen doing another scan. It had returned. He has left the hospital. It was his 15th year post op. His was papillary cancer but he was in the spread level.
Depending whether your surgeon found cancer in your lymph nodes you should continue to have a yearly ultra-sound neck scan by a very experienced scanner using thr high powered scan machine.
My T3 popped up easily with 2-4 brazil nuts daily, sardines and a little beef liver - it was selemium required. It was easy.
RAI treatment is no guarantee that it will not return unfortunately.
It is a cancer that loves to migrant down lymph nodes.
Also your Pituitary gland also an endocrinary organ. Mine showed warm at the PET scan using Radioactive Iodine Tracer infusion in sugar. But the MRI showed no abnormality around it or it itself and no brain abnormality. (no Parkinsons or Alheimers). But I need another CT Scan or Pet scan = not sure but see surgeon on Tuesday, as no other images have been taken of this bottom floor. He wants a repeat in November. 2 lymphs 8mm and 7mm are ? of return after 4th year. But I think they have been killed off with the very low dose of Radioactive iodine Tracer infusion.
Sorry to convey different side at 5 years. Tiredness is one of the symptoms of a growing cancer.
Cherio JOY
Hi again.
Rereading your post.
Solgar is best for B12. 1 nugget under tongue sublingual 1000ug taken every day for 2 weeks raised mine from 150 to 900 level. I did it with Dr so blood tests until it settled. I then took 2 days of 1 nugget a week. An increase of 3 days since 2019, 9 years after I stated.
B12 is better straight into blood stream and not through the stomach.
TSH too high above 4.2 or in suppressionbelow .6 is difficult for the heart. Hyper Risk of bulging eyes, AF (irregular heart) are two risks.
Research has changed decisions about suppression.
cherio JOY
Hi
Saw my surgeon yesterday.
He answered my questions.
1 was why 12 lymphs removed? He said I took out those around your thyroid. There were 12. I asked how much was the cancer down 2 which were tested and found to be affected. 1 x 3mm and 1 x 1mm. 10 were clear.
He thinks that the 19mm x 9mm is my childhood thymus.
He will be looking at the 2 lymphs which are suspicious. 1 x 8mm and 1 x 7mm. i said they may be destroyed due to the radioactive iodine tracer infusion which is put in before the 1 hour wait before the CT scan. He agreed as my thyroglubin serum came down from 1.7 to 1.1 or .98. from another lab. Creeping up is a cancer indication.
my antibodies are down at 15.
he has written a blood test and he will check. CT scan in November. Then 6 mthly.
SADLY HE IS RETIRING IN DECEMBER. Young.
Still his gory procedures are also colon cancer or breast cancer.
He is a caring surgeon and he has remained with me as I did not want or like the Endocrinologist who gave me Metoprolol when i said NO.
Do get the thyro serum and thyro antibody levels done.
cherio JOY. 75 (NZ)
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.
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
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.
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..
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.
I have just been reading that Synthroid is a lot more expensive than Levo so I suppose they will not use it.
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.
Thanks for your reply - I'm going to continue keeping a symptom diary and record medication and then see how I get on .
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?
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?
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.
Hi again
Synthroid comes in all doses 25, 50, 100, 200...
I take my 125mg under tongue sublingual. It goes straight to the blood stream. I can stay at 1.7TSH which my surgeon wants and I want and best USA surgeon Gary Clayman directs low risk papillary cancer.
The PET scan recently has killed off two remaining lymphs 7mm and 8mm left but grown to that in 4 years. My thyroglubin serum was at 1.7 but down now to 1.1.
This serum is a great marker of return of cancer. 1-2 is ? Should be below 1. After a full thyroidectomy.
cherio JOY. 75. (NZ)
Hi
As Levo... is not made in 25mg I has 2 x 50s Lev.. and 1 x 25mg.
Since I get a tint hard rash from the yellow in both 100 and 25 I have changed to 2.1/2 tabs of 50mg Synthroid which is white. Seems to be resolving.
cheri JOY. 75. (NZ)
Hi
Read my input on Synthroid and cheapest bulk supply off Levo....
But do you support the conveniences and trustworthy of the bulk buy, no expiry date so ask for it, not reliable so more tSH tests to know your level and I dropped them on the floor. Got a dog so hAD to find them.
Lucky I don't pay for them and nor should you. You have to take them as they replace all your hormones FOR LIFE.
Take after 4 hours of food fasting so early morning for me. Then no breakie for an hour only water. No milk 4 hours or iron. Otherwise no soy, no seaweed, not too mch on greens. Don't drink fluorinated water or chlorinated. Leave out licourice.
cherio JOY
Hi
Synthroid.
I changed to have all Synthroid as I was taking the 25mg. And the bulk Levo... chemist one.
Advantages with Synthroid
1) Trustworthy dosage
2) 90 pills in a sealed container
3) Kiddy Lock
4) take however much foil off the seal to get pills out. Now never drop them.
5) Expiry DATE
The best.
I discovered by adding 2-4 brazil nuts, sardines, and beef liver to diet you can raise your T3. Was 3.9- 4.1 but after PET Scan 3.4 L. and new diet now 4.7. Done.
cherio JOY. 75. (NZ)
