Hyperthyroidism : Hi there So for a little... - Thyroid UK

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Hyperthyroidism

vooxxy profile image
19 Replies

Hi there

So for a little background information I had thyroid cancer when I was just 8 years old so I had it all removed. Now I do not remember what thyroid medication I was on at that age as I was very young. Anyways from what I do remember I was on liothyronine 20mg for one day then 40mg the next for a while then my Oncologist put me to 40 mg then eventually 40 mg one day then 60 mg the next as i got older. Everything was fine I do think my levels were a little high but my body was fine at the level it was at (which i dont have the numbers for but can get).

Then everything changed in the year 2015 my Dr switched my medication from t3 to t4 from what I understand but was not told was down to the price. It took a few months but my body did NOT react well to levothyroxine as my levels went sky high and I got hyperthyroidism rushed to the hospital for them to just to tell me about the bloods being high and to take less.

Anyways eventually my thyroids were switched back to just t3 only and the dose was 40mg each day. So my levels gradually fell back down I dont know the number but it did drop from what it was at with just t4s.

So this was all over 2015 and 2016 for my levels to get back to what they were before or close to it. So 2017 im still feeling some of the side effects of being hyper but not as bad. However I also take two other medications vitamin D3 and calcium supplements. In April this year my calcium tablets which I have been on since i was 8 were switched Sandocal Effervescent 500 mg (these stopped being produced now only available as 1000mg) to Calcichew 500 mg Chewable Tablets. I took these for two months but suddenly I would start to get random side effects which i thought were the cause of these new tablets.

The effects I would get was like I would just be sitting there at night and randomly i would start to get shaking rapid shaking, sweating, foggy brain and chest pounding. Like the experience I had with the the t4 medication. So this happened about 4 times like spaced out in weeks but it got so bad I went down to the hospital with it. They checked my bloods calcium etc was fine they said but my thyroid levels were high the t3 level.

So I went back to my gp and explained what was going on and he said my body is sensitive to medications changes it seems and put me back on to the Sandocal calcium 1000mg half tablets. He did mention about the thyroid levels but left it as that.

Now it has been about 2months that I have switched back to my original calcium supplement. I haven't had the extreme shakes however the sensation does sometimes come on. Other symptoms I experience are random rapid heart, sweating when I wake up at night, numbness/tingle on my temple area and top of my head, muscle soreness all over (bones), bad sleep so wake up feeling of fatigue, eyes more red than usual and like a heartburn feeling around the heart and gut area. Just general feeling horrible it is hard sometime to try and explain how you feel.

So I went back to the gp who contacted my oncologist because the gp did say my t3 was high sitting at 11.3 im sure I heard this correct I don't know all my levels currently I plan to go see them. Hyperthyroidism.

So now the t3 I take now is 20mg one day and 40mg the next to see if it brings down the t3 level suggested by my gp and confirmed by the oncologist. As they think Iam over medicated.

So medication that I take is: t3 20mg one day 40mg the next which i have been doing since tuesday (22/08/2017), Sandocal Effervescent 1000mg half tablet 500 in afternoon and one at night to space it out 4 hours from when i take my t3 and one fultium D3 800iu.

By the way I never knew about separating thyroid tablets and calcium until around 2014/15.

So this is a brief summary of what is going on with me and thyroid medications / calcium.

So I wonder did the calcium (Calcichew 500 mg Chewable Tablets) that I was switch to spark this rise in my t3 levels? or was it still high from the t4 medication and thats where it got to level wise? or was going from the dose of t4 (equivalent to 40/60mg t3) right back to 40mg t3 the issue?

Appreciate anyone who read all this and suggestions.

I understand that I’am in the minority who cannot tolerate t4 levothyroxine.

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19 Replies
Nanaedake profile image
Nanaedake

I'm sorry you've had so many problems with medicines but you're not the only one. Lots of us are sensitive to medicines.

It's difficult to speculate what might have made you feel ill without seeing all the blood test results.

If you post your most recent blood tests here, people might be able to give you good suggestions based on where you are now.

greygoose profile image
greygoose

I don't think the calcium could have caused your FT3 to rise over-range. If you'd taken the calcium and the T3 at the same time, you wouldn't have absorbed your T3, so your level would have been low. Why are you taking calcium and vit d3, anyway? Were your parathyroids damaged during the thyroidectomy? Are they keeping a close eye on your levels? Because taking vit D3 will increase your absorption of calcium from food. You really should be taking vit K2 - MK7 as well, to make sure all that calcium goes into your bones and teeth, and doesn't accumulate in the tissues. Although, to be honest, the weeny dose you're taking won't do much of anything. What is your D3 level? And, you do need to take your D3 four hours away from your T3, as well.

If it were me, I wouldn't like taking 20 mcg T3 one day, and 40 the next. You can do that sort of thing with T4, because it's a storage hormone. But, with T3, the active hormone, you need a steady daily dose. Chopping and changing like that is not a good way to treat your body, it will be too stressful.

Oh, and you didn't ever have hyperthyroidism - you can't be hyper without a thyroid. You were over-medicated. Not the same thing at all. :)

vooxxy profile image
vooxxy in reply togreygoose

Thanks for the reply, yes I never knew about the taking the calcium and t3 at the same time was not the best thing to do as I was never told! The last time my vit d was checked they said the level was "fine" but when i get the numbers I will repost here. Yes everything was removed so thats why i got put onto vit d3 and calcium.

greygoose profile image
greygoose in reply tovooxxy

You're welcome.

vooxxy profile image
vooxxy in reply togreygoose

Hi greygoose

Put my results at the bottom in reply to Phonenix605 any feedback is welcome

Phoenix605 profile image
Phoenix605

Have you had your essential nutrients tested? We are often low in vit D, b12, folate and ferritin due to poor gut health impacting on absorption. Heartburn feelings are actually more likely to be caused by low stomach acid than high in thyroid patients, which will stop you absorbing properly.

Most of the symtoms you describe cross over, they can be found in under or over medicated patients or as the result of deficiencies. I know from experience that poor B12 and D cause muscle, bone and joint pain and foggy thinking and a lot of people describe tingling and numbness as a result of low b12. 800iu of D3 is a maintenance dose for people with decent levels, if you were prescribed it for a deficiency it will not raise you up in a month of Sundays.

Ask for copies of all your results including ranges (normally in brackets) and post them and members should be able to advise on the most likely causes of the various symptoms. I followed SeasideSusies excellent advice and fixed some bad nutrient levels and a conversion problem to boot. The most common T3 range we see is around (3.1-6.8) so if they are your test range 11.3 would suggest over medication. Being over medicated can feel just as bad as under.

I agree with GG chopping and changing your T3 is not going to help you feel stable and might well account for symptoms coming and going as your T3 level swings about. Get a pill cutter so you can take 30 a day or ask your GP to alter your prescription, I believe it comes in 10 mcg tablets too.

vooxxy profile image
vooxxy in reply toPhoenix605

Thanks for the reply, no only had the calcium and vit d checked I will ask for these other ones to be looked at next time i speak with my gp. I will also ask for my results and post them.

From what my gp said regarding the vit d results he said it was "fine" and the calcium was a bit low.

Phoenix605 profile image
Phoenix605 in reply tovooxxy

Definitely get a copy of your results and post them here for advice unfortunately GPs know very little about nutrition and like thyroid meds say you are fine when only 1 point above deficient ☹️

vooxxy profile image
vooxxy in reply toPhoenix605

Hi again Phoenix605

So I went up to get my results from that blood test that was took it shows

Free T4 level <3.0

Serum TSH level <0.05

Free T3 level 14.9 pmol/L

This was on 16/06/2017

I also have a dr phone call appointment today so going to ask to get the other things tested:

Vit B12, Folate, ferritin etc anything else i should ask?

greygoose profile image
greygoose in reply tovooxxy

Antibodies.

I'm afraid we need the ranges for those results to make any sense.

Where are the vit d3 and calcium results? I think you need the calcium retested, too. It's rather worrying that you are taking all that calcium.

Have you started taking vit K2 - MK7 yet? It really is very important. :)

vooxxy profile image
vooxxy in reply togreygoose

Calcium is also on this test ok so:

Serum Calcium

Serum albumin 53 g/L normal range 35-50

Corrected serum calcium level 2.35 mmol/L Normal range 2.20 - 2.60

Thyroid hormone tests

Comments: = This may indicate over-replacement unless there is a history of thyroid cancer when a suppressive dose of thyroxine is required.

Free T4 level <3.0 (no normal range indicated)

Serum TSH level <0.05 (no normal range indicated)

Free T3 level 14.9 pmol/L Normal range 3.1 - 6.8

However the D3 is not there but when i get the call from GP i will ask. I will also ask what my previous level are to see how high it has risen from. Anything else you suggest i should ask my gp?

greygoose profile image
greygoose in reply tovooxxy

As you are taking T3 only, it is normal that your TSH and FT4 are suppressed. But your FT3 is terribly over-range. You are over-medicated. And being over-medicated can cause as many symptoms as being under-medicated. I really think you need to reduce your dose. Preferably to a steady daily dose, not alternating.

vooxxy profile image
vooxxy in reply togreygoose

Yes only taking t3 i wonder why they didnt just say cut the dose to just 20mg for a few weeks to bring the level down instead of this 20 40 thing they have me on...

greygoose profile image
greygoose in reply tovooxxy

Because they have no idea what they're doing, that's why. It's a stupid dose, anyway. You just can't do that sort of doing with T3.

vooxxy profile image
vooxxy in reply togreygoose

So just got off the phone with gp said to stick to 20 40 for now to see how it goes they dont want me to go underactive levels if just on 20 ... i explained to him more my symptoms told "try not to overthink" yeah ok great advise what i just sit here and suffer...but iam going to get my b12, ferrtin and folate checked and d3. If it wasnt for this website i would never know about getting these checked the damn gp should be doing this not me telling him to ...

greygoose profile image
greygoose in reply tovooxxy

Well, it would be rather a large drop, anyway. T3 should be reduced by 6.25 mcg every two weeks.

BUT, I'm sure this 20/40 dosing is not doing you any good! Can you not cut your tablets so that you are taking 30 every day? I'm sure that would make you feel better.

vooxxy profile image
vooxxy in reply togreygoose

Hey greygoose, I got my results for b12 etc back:

Vit D 141 nmol/L Normal Range 25-170

Serum ferritin 176.9 ng/mL Normal Range 28.0 - 285.0

Serum vitamin B12 330.7 pg/mL Normal Range 197.0-771.0

Serum folate 2.78 ng/mL Normal Range 3.90 - 26.80

Haematology: Note low Serum Folate - there is haemolysis in the sample, therefore the reported results maybe falsely elevated

GP noted low folate so gave me 5mg folic acid but from researching a little and not took it yet it seems Methylfolate is a better choice to up folate? and with foods high in folate. So high t3 and low folate.

greygoose profile image
greygoose in reply tovooxxy

Your B12 is rather low, too. Do you have low B12 symptoms? Ideally, it should be over 500. Folate and B12 work together. But, if I were you, I would take those two results over to the Pernicious Anemia forum, and see what they say about it. They are experts on B12, but for the most part, know nothing about thyroid. So, it's a good idea to get both views. :)

Phoenix605 profile image
Phoenix605 in reply tovooxxy

B12, folate, vit d and ferritin are the main ones, you could ask for zinc, selenium and magnesium too but I highly doubt you would get them. They should check your calcium levels as you are prescribed for it. Do you have the ranges for your thyroid results as they dont mean a lot without it.

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