Problems with right pill & dosage after thyroidoctomy

[marialefkada]

Hello, everyone

I'm new to this site, my name is Maria, I'm 42 years old & I come from Greece.

The reason I'm writing is because I'm desperately looking for answers to my feeling so miserable after my complete thyroidoctomy Dec. 2014.

After being diagnosed as having Graves disease at least 11 years ago and leading a miserable most of the time life due to the symptoms, we decided to proceed with surgery. It's been 10 months and still struggling to find the right dosage.... and still having symptoms and still leading a miserable life to the point I think I need psychotherapy.

First was prescribed T4 150mg (and 175mg for a while), then during the summer from 150mg from one month to the other I got Hyper symptoms and from 150 mg I ended up taking gradually 125mg and some days 112mg.

Then towards the end of September got Hypo... (8,030 tsh). Endo thought should change pills. Since then, I've been on TIROCINT125mg, doctor told me to have blood tests after having taken it for 40 days, around 5th November. But now it's the middle of October and I'm having headaches, put on weight, actually feel.... huge, got depression and lack of energy, etc. I can't stand this anymore and on top of that I think my doctor doesn't really care to find out what is going on. Suppose I have to find a new one...

How should I go about it? Time matters and it's not fair for me to suffer like that if there's sth to be done!

Pls need to hear your experiences & advice.

Thank you loads in advance

[Hidden]

I am not a doctor but what I was told during my treatment is that it takes up to two weeks for the hormone in the blood stream to be used by the body. That is how long it takes all the T4, on average, to be turned into T3. So if you move to a new dosage then it will be about two weeks before you will know how you feel on that dosage.

It also takes about six weeks for the pituitary gland to adjust the amount of TSH being produced. If a doctor uses TSH as an indicator of how much hormone the body needs, they may need to take account of the time lag. Basically the TSH tells you if the dose three or four weeks earlier was the correct one.

I think it is a good idea to stick to just one brand of hormone in case there is variation from type to type.

There are other factors that can affect how much hormone is available, like the time of day you take the pill and whether you have iron or calcium-rich foods that can block absorption.

Finally, if you get a lot of seafood at some times of year, because this contains iodine you can find the T4 converts more easily to T3.

Hope you find the right level soon!

[marialefkada in reply to Hidden]

Dear Sarah,

Thanks for your answer!

What you are telling me does make sense....

What I don't understand is why my body starts reacting earlier than the required 6 weeks.

For example, when I move to a new dosage it usually takes about 10 days to feel better but after a little less than a month symptoms begin....

And this is the case now. With Tirocint I've been feeling better but all of a sudden after less than a month there seems to be something wrong. I've been having headaches, feeling dizzy, sad & really hot.

When I told my endo he said we should wait a little longer before I have a blood test.

I'm wondering if there are other reasons that could influence the body's reaction such as psychological.

I mean a few days ago something happened that really upset me and I think it was then that everything came upside down!

Could it be so? Could it be that our feelings could influence the efficiency of the pill and probably need dosage adjustment?

In that case, I'll never get well!! I dare not believe such a thing!!

Best Regards

Maria

[Hidden in reply to marialefkada]

I think you started on an average dose, then that was increased, then decreased, then decreased further, and now it's been increased again? That is a lot of changes in a year! For your body, I mean.

Every time you are under- or over-medicated you will need to allow a little time to recover from the symptoms of under- or over-medication. For example, when I had low thyroid hormone my Vitamin B12 levels were low and that made me feel very down.

I think your doctor is right, wait and test and then if you do increase the dose, make a small adjustment, give it time and then check again.

There is no 'patience pill' but can you find something that makes you feel better while you are waiting? I find that I feel so much better when I get the basics right - healthy diet, regular gentle exercise, sleep, relaxation, not too much alcohol or stress.

[shaws]

Marialefkada (very nice island Lefkada),

Welcome to our forum and you will now get support and information which may well help you to recover your health.

Are you living in Greece?

[marialefkada in reply to shaws]

Thank u very much! I do indeed live in Lefkada, have been for the last five years. Came from Athens looking for an alternative way of living but thanks to thyroid so far haven't enjoyed anything that much...!!! We'll be in touch..

[Marz in reply to marialefkada]

...it will get better if you are able to take some steps for yourself rather than rely on the Doctors. If you read my Profile - by clicking onto my name - you can read the long journey I have travelled in order to be well. I have learnt so much since joining this forum 4 years ago - and found that reading and following advice proved very helpful.

Many people in the UK struggle to have the appropriate testing - it is so much easier in Greece - so do have the suggested tests - post the results in a NEW post and people will comment and help.

[Marz]

Sorry you are struggling - I have recently returned from Lefkada where we visited for my Birthday treat at the end of September ! We stayed in Geni. I have lived in Crete since 2004 and am from the UK.

Do you have any blood test results - I know how good the Greeks are at handing you the results for safe-keeping Perhaps your FT3 is low in the range and it could be that the addition of T3 would help you to feel better. If your GP is not interested then that could be the best route for you - to add it yourself. I am T3 only and am happy to help you if you wish to add it to the T4 - others too will have lots of good advice.

How are your levels of Ferrritin - Folate - B12 - Iron - VitD ? They all need to be optimal and not just in range. When these levels are good - you may feel stronger - both physically and mentally. Low B12 presents with very similar symptoms to Thyroid issues. Everyone with a thyroid problem seems to have Low B12. It needs to be near the TOP of the range - around 900/1000. Ferritin needs to be around 80/90 and VitD at the top of the range. I know you have plenty of sunshine - however hubby and I both tested LOW even after being here for several years. Also your medication will not work well if levels are low.

Others will be along soon - Saturday nights can be quiet on the forum - everyone hopefully having fun !

Please keep posting and asking questions......

[shaws]

I agree with Marz's recommendations.

This is for information and sometimes the addition of some T3 to T4 can be beneficial. I know Greek doctors prefer levothyroxine but not if the patient isn't really getting better and you appear to have more symptoms. I am hypothyroid and take T3 only but I think all people who have had a TT should have T3 added. I am not medically qualified but, for me, the addition of T3 helped a lot.

[maggykriti]

Hi Maria,

I am sorry you are struggling to get the treatment that you need after your thyroidectomy. I had a total thyroidectomy in 2002 in Crete and found it took some time to get the level and type of thyroid hormones I need. When your thyroid is removed it is not just T4 which needs replacing, this was what I was given in Crete.

The thyroid gland produces nine hormones and also calcitonin. The hormones which are understood best are T4 and T3. T3 is present in the thyroid gland and is also produced by deiodinising T4 in the body.

I take a natural dessicated thyroid hormone replacement with additional T3 and I am reasonably well on this. Even with the natural thyroid, which contains T3 and all the other thyroid components, I still need the extra T3 to function well. I am prescribed T3 now but I have bought it at the pharmacy in Crete when required.

I hope you can get some help on this forum and from your doctors. I think it is necessary to fight for our health after thyroidectomy!

Best wishes

[marialefkada in reply to maggykriti]

First of all, I would like to thank you all for your replies. It turns out that it's going to be very interesting taking part in this forum...

Dear MaggiKriti, do you live in Crete?

I'm under the impression that nobody gets T3 here in Greece. It seems as though a certain "path" has to be followed for treatment and no doctor goes any further. I have come to believe that doctors like an endo, a psycologist and maybe others as well should work together to help their patient. Besides, the symptoms are so many, influencing both our body and our minds... For example, here in Greece if an endo gets the blood results and levels are normal, they will tell u that now you are ok! Even if you still feel awful, like having some of the "usual" suspicious symptoms..... And you are on your own and you just have to fight your own battle... Graves disease gave me such a bad quality of life, messed with my character. I mean all these nerves and anger.... My family and friends had to tolerate that. I thought that after the thyroidoctomy things would get better. Surgeon told me to be patient and wait for a year after the operation. Well, it's been 10 months already since then and I'm still waiting for a miracle that will change my life ...

Good thing is that we still have warm nights so I can go out for a pint (like u English say)...!!!!

Take care all of you!

Regards

Maria

[maggykriti in reply to marialefkada]

Hi Maria,

I am only half time in Crete and half in the UK. However, it is twenty years since we first came to Crete and it is my second patrida.

I think you are right that Greek endos like to stick with T4 in spite of the high number of people with thyroid problems in Greece, Crete particularly because of low iodine in the land. UK doctors are much the same in thinking that normal blood results mean you are well. I think the reason many people need a forum like this is that they know they are not well.

T3 is the active hormone and so needs taking in small amounts initially and with care. I could not have the life I do without it. I don't know how you feel about talking to your doctors about introducing T3. I wouldn't want to suggest that you should try it over the counter until you have explored all ways to be prescribed something which makes you feel better. In the end it is your life and your body.

I hope you can get the help you need.

Enjoy the warm evenings, Maggy

[carolyn982]

Hi Maria! I'm Greek-American and just moved to London for work. My father is from Kefalonia so we are 'neighbors'. I go every summer to Kefalonia. I have struggled since 2010. You can read my story on my profile. I too have had a very difficult time in Greece because all the endos think that T4 is the only treatment! The good thing about Greece though is that the tests are cheaper than in the UK I think and that you can walk into the pharmacies and ask for whatever thyroid medicine you want. I have bought T3 on my own, for example. Of course, the difficult thing about that is that if you don't know what you are doing, it's very difficult. Because we have such little support in Greece, I made a Facebook support group in Greek to help Greek women know that the T4 isn't everything. I am trying to help the Greeks because I know how stubborn the Greek endos are. They only care about diet and metabolism and they don't care enough about the thyroid hormones. I just started here in the UK and I hope that I have better luck than I did in Greece. Maybe you can come to the UK and be treated? From what I've learned, we need our FT3 and FT4 to be in the upper levels of the range. Having said that, if we have other health problems, it could be PREVENTING us from converting the T4 that we take into the T3 that we need. This is THE BIG PROBLEM and why we need good doctors who KNOW what they are doing. I went to about 7 endos in Greece- don't waste your time with them. They just don't know enough! You must take your health into your own hands!! I'm happy to meet you though! Keep in touch!

[marialefkada in reply to carolyn982]

Dear Carolyn,

It's good to hear that I have a "neighbour" who understands me...!

Do you only spend your summers in Greece or did you use to live here before moving to London?

I suffered for more than 10 years from Graves Disease, oh my God.... most of the time I thought I needed a shrink... Felt so lonely.

Then my endo decided that it was time for thyroidoctomy.

I was so happy, I thougth that was the end to my problem.

Well, it's been almost a year and I still don't feel well. You seem to be familiar with the medicines that Greek endos give. I used to take for 10 months "T4 levothyroxine sodium". Turned out that I had some sort of intolerance so doctor gave me "Tirocint". It's supposed to be lactose & gluten free. Truth is that TSH improved within a month. Things are better but.....

I weigh 10 kilos extra, not to mention my face and belly are swollen and sometimes I feel like a balloon!! I haven't been myself since surgery...

You say that Greek endos care about metabolism, well do they??? Nobody cares about anything. If blood tests are normal then for them everything is ok!

What about all these things they say about adrenal fatigue, gluten and so on and so forth. What is your opinion?

No endo gives T3 in Greece as far as I'm concerned.

How do I get to know what my problem may be even if my TSH seems to be withing range?

Anyway, no need to talk about everything today! We'll be in touch!

Take care & I wish u every luck with your new job in London!