Hi, I'm Jan and have been on this site just a few days and have learned a lot already. I was diagnosed with severe anxiety and depression in 2006 at the age of 49. However, a teacher in my year group told me to go back to the doctors and get my thyroid checked and she was so right. I was diagnosed as hyperthyroid. Terrible tremors, constantly hot, very emotional, resting heart rate between 100 and 150. When moving to fast to count. The Endo prescribed beta blockers and some tablets to suppress my thyroid, however, these made me feel like a pressure cooker about to explode so my GP referred my for surgery. In the mean time, my sight was suffering so I was sent to the eye clinic who said I had Thyroid eye disease, Graves. My eyes were swollen and I couldn't close my lids. In 2007, I had a complete Thyroidectomy which I thought would cure the problem. Sadly, this made my sight worse and I was referred to Moorfields Eye Hospital for decompression surgery followed by 2 squint surgery. One of the things that came up when I was at Moorfields was when I told them that I had been misdiagnosed as depression. They weren't at all surprised and asked if I had had incidents of depression in the past which I had. They then told me that was most probably thyroid led but my body had managed to cope with it and this time it couldn't. I started on 175 mg of Levothyroxine and am now down to 75mg. I have been complaining to my doctor about various symptoms and am now getting full blood work. Up until now, it has just been thyroid function. I didn't know until I read some of the posts that other tests could be done. Thank you.
Learning curve.: Hi, I'm Jan and have been on... - Thyroid UK
Learning curve.
Hi Janh669 and welcome to the forum. We are all here to support each other. I’ve got to say, I’ve learned more on this forum than from any medical professional. Being encouraged to check my bloods privately and post on the site has been a godsend. Having optimal thyroid levels and key vitamins in range is so important. I was misdiagnosed with health anxiety & saw a psychotherapist for over a year. However, once on a higher dose of thyroid medication & supplements, the anxiety eased massively.
Hi Buddy, thanks for the reply. It's amazing that such a little thing can have such a huge impact on your life. I was totally innocent and believed once my thyroid was gone, everything would be great. I didn't know that levels still changed and still struggle with dry skin and splitting nails.
I am confused. Are you saying you had a Thyroidectomy in 2007 but have only recently started on Levothyroxine and are now “down to 75”? Firstly you should have been put on it immediately following thyroidectomy and secondly, 75 is a very low dose if you have no thyroid. Could you please explain?
Hi Hennerton. Thanks for the reply. After the thyroid was removed, I was put on 175 mg and this has been steadily reducing. Having said that, for years my 6 monthly checks have just been thyroid function, which I see from this forum, is not enough. However, I am due for a test in 2 weeks to check my new levels and this one covers most of what is mentioned.
Hello Jan and welcome to the forum :
The first step is coming on this forum and asking questions and reading other peoples thyroid journeys :
The second step is arranging a full thyroid panel to include TSH, T3, T4, plus ferritin, folate, B12 and vitamin D and if you doctor is unable to action this for you there are companies listed on the Thyroid uk website, who are the charity who support this amazing forum.
The third step is then to start a new post with the results and ranges and you will receive considered opinion on how you can start your journey back to better health,
I was where you are some 5 years ago when I found this forum and started reading up myself.
There is also the Elaine Moore Graves Disease Foundation website which will offer you a wider understanding of what Graves is all about, as it does appear to be a poorly understood and badly treated autoimmune disease.
The thyroid is a major gland and living with the symptoms of hypothyroidism can be just as challenging as the hyperthyroidism you experienced in 2007 resulting in your having a thyroidectomy.
A fully functioning working thyroid would be supporting you with trace elements of T1, T2 and calcitonin plus a daily measured dose of approximately T3 x 10 mcg + T4 x 100 mcg: and I just think if there has been a medical intervention and the thyroid removed by either surgery or ablation that both T3 - Liothyronine plus T4 - Levothyroxine should be on the patient's prescription for if, and probably when, both these vital hormones will need to be taken to restore balance and offer the patient the best health possible.
I'm with Graves post RAI thyroid ablation in 2005 and found myself looking for help on this forum when the NHS couldn't help me back in around 2016/17 and having been refused any thyroid hormone replacement other than just T4 - Levothyroxine, I now self medicate.
I am much improved thanks to this forum and you too, can turn things around for yourself once you understand what the cornerstones to this thyroid jigsaw are for you and know what you need to do to regain your better health.
Hi Pennyannie, Thanks for the reply and excuse the language, but Blimey! You are well informed. I did some research at the time but was unable to find a lot of information. I am just on Levothyroxine and have never heard of T3 Liothyronine. How do you self medicate? My GP told me when I said that I thought I needed a higher dose, that I shouldn't take it on myself to change things.
As you say, this forum is magic for learning things. Thanks Jan
Hey there -
Yes, you will need to become your own best advocate, and yes back in the day, there wasn't the information readily available, and when we are unwell we go the to doctor and follow the advice offered as, that is their specialisation as we know no different.
I have to say, for Graves Disease mainstream medical hasn't moved on that much, with the guidelines still recommending RAI or a thyroidectomy should the anti thyroid medication not " solve the problem " . Mainstream medical does not know how to reduce / control of autoimmune component of this disease so to move things along, disable or remove the thyroid thereby removing the life threatening symptoms.
So one stills has an autoimmune disease, but now it's not life threatening, but you have lost your main engine, your thyroid, and many of us do not recover fully on T4 - Levothyroxine.
Up until about 10 years ago T3 - Liothyronine was prescribed by doctors, but now you need a referral to an endocrinologist. Not because it is a dangerous - it is a vital hormone and the hormone that the body runs on and is about 4 times more powerful than T4 - but some 600 % more expensive in the UK than mainland Europe.
T4 - Levothyroxine is a storage hormone which your body needs to be able to convert into T3 the active hormone that the body runs which is about 4 x more powerful than T4 and read the average person uses about 50 T3 daily just to function.
Your ability to convert the T4 into T3 can be compromised if your core strength vitamins and minerals are not maintained at optimal levels - hence the detailed blood test necessary to know where your levels are in the ranges.
As you will now realise you have lost your own thyroid production and lost your own T3 production so in effect been down regulated, by about 20% and overtime, now matter how well you eat, and how well your body tries to compensate for this short fall you will have trouble keeping up and maintaining your overall health.
Read up, ask questions, get a full thyroid panel and start a new post with the results and ranges so people better able than me can talk you through another step forward.
Wow! Thanks so much.
Oh dear, what a tale of woe bordering on negligence. Like Buddy195 my first query was have you not been on Levothyroxine since your Thyroidectomy? 75mg is low and I have seen some research about problems at 100 mg or less, however, this might depend on your stature and age. Let's hope that your bloods will help to see what is going on, make sure you post them. Good luck.
Thanks for your reply. I was put on 175mg immediately after the thyroid removal and have been coming down ever since. I went down to 125 then 100 one day and 125 the next. Then 100 and now down to 75mg. But as I said. They have only been doing tests on thyroid function so this new full bloods might throw up something that helps.
Just make sure you get a printed copy of results, then post on here as suggested, Doctors often say everything fine. I always get a printed copy for future reference, best of luck.
When you say doing tests on “thyroid function“ do you mean TSH ? If so, that’s your pituitary function and not your thyroid function. Unfortunately, most doctors seem to think that’s all they need to test.
Hey there Gingernut :
Yes, how true, I was managed and dosed for over 10 years on just a TSH blood test and became very unwell and referred to as a conundrum !!
The TSH was introduced as a diagnostic tool to test for hypothyroidism :
Once on any form of thyroid hormone replacement it is the least important measure after a T3 and T4 :
The interesting things is that if you have Graves you can still have antibodies " sitting on " the TSH and distorting this reading and so for these patients it's especially important not to use a TSH as it means diddy squat !!!
I too thought that after thyroidectomy that everything would be normal. I knew I would need thyroxine but I didn't realise it would be complex
Not easy by any measures. But I feel so very Blessed that we have our thyroids now in a bottle. We have one another to to bounce ideas off of and exchange individual experiences to navigate our thyroid journeys. Granted most Dr's are not trained with T3 /NDT dosing. Even though healthy thyroids make T3 and T4 . It should be made very clear to Dr's that many of us after TT being on T4 only do not convert T4 to T3 well enough. T3 being the more potent thyroid hormone. In addition most Dr are not trained that nutrients are very essential to help our thyroid meds to work better for us .
Vitamin "D"/K2, B-Complex, B-12/folate, Iron if you test low, magnesium, vitamin "C", Celtic Sea Salt for electrolytes/adrenals.
Advocating for our self's is the key to our wellness. Gathering as much information as possible. And taking note that our wellness does not lie in the TSH . But rather FT3 FT4 . And keeping journals of our symptoms since symptoms are the cellular results. Lab results are just a snap shots of the moment the labs where done.
Best Wishes.
Hi jgelliss, thanks for replying. I too feel blessed. I felt very lucky not to have lost my sight. But until I joined this forum, I had no idea about all the other things that need checking other than thyroid function. I hope that now that I have a little more knowledge, I'll have a better chance of feeling good rather than plodding on.
All the best
Me too! And I think the medical profession is guilty of not warning you how complex things are going to be. I wasn't aware how I would be struggling. I assumed, wrongly, that they just gave you 175mg of Levothyroxine and bingo! You're set for life. I didn't realise that levels go up and down.
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