Thyroid UK
84,039 members99,025 posts

How many people have even responded positively to Levothyroxine?

I've been wondering this as I've felt awful for the entire 9 years I was put on it after my partial thyroidectomy. My bones still crack but got worse over this period, I still feel horribly tired down to the bone and developed heart arrhythmia, mood swings etc.

9 years later and I need a total thyroidectomy - due to the same issue I was diagnosed with originally having reoccurred. No one knew the source behind the cysts but told me it could even have been tap water. And naturally the Levothyroxine will have to be increased and, quite frankly, it's terrifying knowing my symptoms will only get worse.

Just how many people have had success with Levothyroxine? My doctor and surgeon won't entertain the thought of switching my medications and stating my TSH levels et al are "normal". Is there any other medications i could try without needing a prescription? Is there anything else I can do to help myself?

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The fact there are over 70,000 here and the massive campaign recently over T3 tells you that many, many people can not have good quality of life on just Levo

After Thyroidectomy you are likely to benefit from addition of small dose of T3

First you need up to date tests of TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Low vitamins are extremely common, and need improving first before considering adding T3

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Vitamindtest.org.uk - £28 postal kit

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many. Note especially how he says he is reluctant to offer thyroidectomy or RAI as current guideslines and treatment after are so dire

rcpe.ac.uk/sites/default/fi...

See also Improve Thyroid Treatment facebook page

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First of all I am very sorry you have had a thyriodectomy and I think the Endocrinologist and doctor are cruel not to have provided you with the very basic T4/T3.

I have my thyroid gland and levothyroxine was hell. When we are first diagnosed (finally) we are so glad to believe that we will now feel much better that we are being prescribed a product. We're not sure what it is when first diagnosed but are willing to swallow anything that will improve our condition.

I, finally, have been able to chop/change over the years and now have reached a plateau in which I feel well with no symptoms.

It has been proven, time and again by researchers that many improve with the addition of T3 to T4 but apparently none of the medical profession who deal with endocrinology or GPs appear to keep up with research and are so backward with the insistance that levo alone is suitable. No it isn't always. The link below is by a doctor/scientist who was also an Adviser to Thyroiduk.org.uk before his untimely death and he would never prescribe levothyroxine.

They are more concerned about the TSH than the Free T4 and Free T3 and if either of these Frees are low, or middle instead of nearer the top, we will not feel well.

I don't know why people follow a profession which is supposed to be 'caring' and it is our clinical symptoms which can be absolutely awful yet we are told we are 'normal' and they are referring to the TSH when it is somewhere in the range, instead of 1 or lower. It is from the pituitary gland anyway and it's fine when it rises to let us know that our gland is struggling before being diagnosed but after being put on thyroid hormones the priority should be a low TSH of 1 - or FT4 and FT3 in the upper part of the range.

The fact that there is over 70,000+ members with similar stories is proof that the UK guidelines are very much out of date and people are suffering unnecessarily. It is a fact that it is mainly females who suffer from dysfunctions of their thyroid gland if Endocrinolgoists/doctors suffered these symptoms they'd soon change their minds.

We have scientists/researchers on the forum and their latest paper was accepted and they also won an award for the best Paper.

healthunlocked.com/thyroidu...

We have to Do It Ourselves if we want to recover and remove our disabling symptoms.

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Here here......every day i can't believe this madness of thyroid care..when I was pregnant I was treated as an adult, ever since i have had a thyroid problem I have been treated like a child. It's unbelievable but true.!

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Mary75mary76, so you developed hypothyroidism after giving birth? That happens to quite a few women. I don't know the reason for it.

When you see a doctor or an Endocrinologist, remember that we know more than most of them now, so don't be palmed off.

This is a link and it is a pity that doctors and endocrinologists are so very ignorant about dysfunctions of the thyroid gland. I don't think they study at all or keep up with research. After all women do become pregnant and they should be on the look-out for anything that can put her or baby in danger.

hypothyroidmom.com/what-eve...

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Thank you shaws.

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It's shocking you haven't been offered some T3, too :(

Slow dragon gives a good list of the blood tests you have to have. Particularly you can't know if your dosage is correct without TSH, freeT3 and freeT4.

If you're having no luck getting these tests from doctors you can get a mail order, pinprick test you can complete at home, from BlueHorizon or Medichecks. The ThyroidUK website has more details.

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Last year an me/cfs specialist doctor recommended I try t3, but endo in Torbay hospital said no point in seeing them because they do not prescribe t3. Thank goodness for health unlocked and thyroid uk, otherwise you could take it all so personally and go into a deep depression, It is a huge comfort to know someone understands this huge health maze we find ourselves in.

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Mary76mary76 , are you the same person as Soupp?

The CFS specialist sounds good! Couldn't they prescribe? The situation with T3 prescribing is becoming horrible.

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My cfs/me spec said up to my GP who said it was up to endo, who won't even see me. I find I have to build myself to ask anything because I have been so upset before thinking I would get help and frankly I am too poorly to argue with them. One day ! Thank you silver avocado.

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I think having a specialist suggest it is a good reason to think about self medicating. The whole prescribing situation is completely corrupt and mishandled and not fit for purpose at this moment. You might even say to your GP that you'll do it.

If you've got anything in writing from the specialist hold onto it. Hopefully things will improve in a few years and you can use that letter and hopeful improvement to try and get it prescribed.

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Thank you silver avocado, I have just started on thyro gold, and those private tests might be a good idea to see how I am doing, as I feel it is a genetic problem as all my children have tiredness issues and my 12 year as had cfs/me since she was 5 years old. I really want to find answers for them to live a healthier life than me.

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Thyroid problems in general run in families.

This forum is a great start to get on top of it and start double checking what doctors are doing and making your own decisions. Often they are very poor and seem to be getting even worse at the moment :(

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