Your TSH result of 61.70 is so high - no wonder they didn't do the op. It would probably have been too dangerous.
I really don't know how you have survived on 25mcg of levo for 5 years. It is a incremental dose, not a starting one. 50mcg is the usual with increases of 25mcg every six to eight weeks until the TSH is 1 or lower. With a Free T4 and Free T3 in the upper part of the range. You haven't had the Frees taken as many doctors don't think these numbers are relevant but they are. Your T4 is below the range, so your body is not getting the only Active thyroid hormone - converted from T4 into T3.
I'd start on 50mcg immediately. Why on earth did you stop levothyroxine, once we are diagnosed it is a lifetime we have to take it. Our body needs T4 to function, when it converts to T3. T3 is needed in our billions of receptor cells and heart and brain in particular need optimum.
I think you should ask GP to be referred to an Endocrinologists as he doesn't seem to know much and to allow a 25mcg of levo for five years. I am sure he wouldn't have said to stop.
Anyway you have to start on 50mcg (and I'm not medically qualified but have hypothyroidism). After six weeks have another test, it has to be a fasting one although you can drink water. You also have to leave 24 hours gap between last dose of levo and the test and take afterwards.
Request doctor to test your B12, Vit D, iron, ferritin and folate. If we are deficient this can also cause us to have unpleasant symptoms as everything has to be optimal.
Always get a print-out of your results with the ranges for your own records.
Have you ever been told by a doctor that you have autoimmune hypothyroidism or Hashimoto's Thyroiditis (known to patients as Hashi's)? Hashi's and autoimmune hypothyroidism are two names for the same thing. In the UK doctors rarely use the name Hashi's.
I would guess that you have Hashi's. 90% of cases of hypothyroidism in the UK are caused by Hashi's, so it definitely isn't rare.
What having Hashi's means is that you have antibodies in your body which are attacking and destroying the cells of your thyroid. The destruction takes a while - could be years or decades. The antibodies I refer to can (usually but not always) be measured with blood tests. If you've never had thyroid antibodies tested then ask your doctor for the test.
The problem with having antibodies is that their numbers and activity level fluctuate, sometimes very strongly. Fluctuations where the antibodies actively destroy your thyroid may last only hours or days, then things go quiet until next time.
When antibodies kill cells in your thyroid, the hormones contained within those dead cells is released into the body and bloodstream. This extra hormone can be detected in blood tests. The results are that your Free T4 and Free T3 will go up, and as a result your TSH will then go down.
When antibody activity diminishes again the Free T4 and Free T3 will drop and your TSH will then rise.
Over time more and more of the thyroid is destroyed and eventually the patient is permanently hypothyroid. In fact this is usually what doctors wait for before treating the patient for hypothyroidism. They don't try to arrest the destruction of the thyroid - they don't know how and there is no pill for it.
A lot of doctors have no clue how autoimmune hypothyroidism works. They certainly don't understand the fluctuating thyroid function test results, and it is quite common for patients to be blamed for "misuse of their thyroid medication", assuming they have been diagnosed with hypothyroidism and are being treated. There is no way that antibodies can be treated pharmaceutically, so doctors generally just ignore them.
A problem for patients is that antibody numbers fluctuate and so if blood tests are done when the activity level is low blood tests may come back negative. A positive antibody test is conclusive. A negative test is not. Some people have scan evidence of their thyroid being destroyed, and a conclusive diagnosis of Hashi's via that route, and yet they may never have a blood test at just the right time to catch the antibodies.
So, coming back to what happened to you, you obviously had a flare up of antibody activity, your Free T4 and Free T3 may have gone high, and your TSH would then have dropped. The doctor decided you'd "gone hyperactive" and stopped your meds. But the antibody activity may only have been high for a few hours or a couple of days. So coming off your meds for a couple of days to reduce your high hormone levels may have been all you needed before resuming your Levo. Certainly, giving up meds for several weeks has been a disaster for you.
Do i go on 50mg or bk on my 25mg?
Advice please as im stressing now cos ive had no levothyroxine in me for 7 weeks???
What if 50mg sends me overactive again.
It isn't the Levo that "sends you overactive". It's your thyroid antibodies. I would suggest you re-start at 50mcg per day. Then make sure you aren't kept on that starter dose for more than 5 - 6 weeks before having another test and increasing your dose by 25mcg. Then stick to 75mcg per day until a re-test after another 5 - 6 weeks, and keep on going that way until your symptoms are resolved.
Were you aware of being "sent overactive" at the time you had your meds taken off you? If you can persuade your doctor of what is going on then perhaps he might trust you to cut down or stop your meds for a few days then re-start them depending on how you feel. One thing you might want to try is taking your temperature first thing in the morning before getting out of bed, and keeping graphs of the results. However, if you are pre-menopausal the menstrual cycle alters temperature too, so you would have to become expert in what your own menstrual cycle was doing as well as learning the significance of any sudden drops in temperature or sudden increases. (Low temperature suggests low activity of antibodies, higher than usual temperature suggests the antibodies are busily killing off your thyroid and raising your hormone levels.)
There is some good news... For some people, antibody numbers can be controlled and reduced by diet. The most common thing to help is going gluten-free. It has to be done ruthlessly and religiously. People can't be "almost gluten-free". That's a bit like saying someone is a little bit pregnant - it's nonsense. I suggest trying gluten-free eating for a couple of months, and see how it makes you feel. But before you start, get blood tests done of the TPO antibodies and the Tg antibodies. After a while you could test again and see if the numbers have changed, although fluctuations in the activity and numbers may make the tests a bit hit-and-miss.
Another thing that helps some people reduce antibody numbers is taking a selenium supplement - 200mcg per day.
There are other dietary changes that some people try - removing casein and lactose from the diet by giving up animal milk products. Others are removing nightshades from the diet, or eating a low histamine diet. The basic aim is to maximise gut health because this seems to help reduce antibody numbers. But only try one thing at a time, and if a particular intervention doesn't help, go back to eating the thing you removed from your diet again. (The only thing I've tried myself is going gluten-free. It has been a huge success for me for various reasons.)
Someone you should do a search for is Izabella Wentz. She is a Hashi's sufferer herself, and she has a website, a Facebook page, has appeared in a few Youtube videos, and has written a couple of books which are available on Amazon.
Sorry, I've just realised this turned into an essay.
What a superb post humanbean. Brilliantly informative and one I shall try to take a screen shot of for future reference if/ when I get a Hashis flare. Huge thanks for sharing your knowledge and insight with us all.
Yes I did. But now you've pointed it out I realise it could be misunderstood. I meant - from a starting point of taking 50mcg per day, when and if it becomes necessary to increase dose, raise the dose by 25mcg per day to make a total of 75mcg per day which should be taken for the next 5 - 6 weeks and another re-test.
That makes more sense - was worried someone without knowledge may think to up it on consecutive days. Thanks. Jo (on holiday in a lovely part of Italy at the moment)
Can I just confirm when having a hash's attack that the T4 and T3 ALWAYS rise and the ALWAYS TSH lowers.
I ask because I recently felt very ill with what felt like a virus, I had my levels checked and because my Thyroid peroxidase antibodies had increased to 32 from a previous level of 28, a member said I could have had a hashi's attack, but my T3 had dropped to 3.58 from a previous level of 5.4.
From what you say in your post I could have NOT had a hashi's attack then.
Can I just confirm when having a hash's attack that the T4 and T3 ALWAYS rise and the ALWAYS TSH lowers.
I can't answer that, sorry. Making sure that testing is done during a Hashi's attack that nobody can see would be virtually impossible. And there would be so many variables.
a) If someone has TPO antibodies and Tg antibodies who can say whether one or other or both are active during an attack. If someone has just one kind of antibodies, what effect would that have on test results?
b) People have vastly different antibody levels. If someone has a level which is a smidgen over the range and someone else has a level which is in the hundreds or thousands, there is no way I know of to determine how much effect they have on the thyroid during an attack, and how much effect it would have on test results.
c) If one person is a better converter of T4 to T3 than another that may lead to different results during a Hashi's flare.
d) There may be some people whose TSH reacts more sensitively to high Free T3 and some other people whose TSH reacts more sensitively to high Free T4.
e) If a Hashi's flare begins on a Monday morning at 9am, reaches a peak of activity on Tuesday at 9am, and then ends on a Wednesday morning at 9am, people won't have any way of knowing those exact timings. So, tests taken on Monday at 10am will show different results to someone who gets tested on Tuesday at 10am. Whether these hypothetical tests would show Free T3 and Free T4 reaching a peak at the same time is possibly rather unlikely.
f) One person could have a thyroid which is still 70% intact and someone else may only have a thyroid which is 20% intact. What effect that would have on results during a Hashi's flare I couldn't say.
Looking at the results you quote your Free T4 is way below range, Free T3 is low in range, your Total T4 is way under range, and I would have expected your TSH to be higher than it is. So you may have a contribution to your hypothyroidism of having a pituitary and/or hypothalamus which aren't working adequately i.e. you may have secondary or tertiary hypothyroidism. That would have an effect on results during a Hashi's attack too.
I do hope you are being treated for hypothyroidism and that your doctor isn't trying to monitor you with your TSH. If he/she is, try to convince him/her that your TSH is not a good way to interpret your thyroid function test results,or find another doctor and ask for testing for central hypothyroidism (which refers to secondary, tertiary or both).
If you had had a virus that make you feel very ill, there is a good chance that whatever you were suffering from was not Hashi's at the time of your unexpected results. But I suspect you'll never know for sure.
So 6.5 years ago you had a TSH of 8.9 and a Free T4 which was in range.
Now you have a TSH of just over 1 and a Free T4 that is way under the range.
I can think of a few comments ...
1) Something has happened to your pituitary or your hypothalamus since you were diagnosed, reducing the ability of your body to produce TSH, or
2) Your Free T3 may have been rock bottom 6.5 years ago and that drove up your TSH, or
3) Something about the way your body reacts to NDT, or perhaps specifically the T3 in NDT completely changes the way your pituitary and/or hypothalamus responds to your Free T4 and Free T3 levels.
Which of those scenarios is true (if any), or if something else is happening that I haven't thought of... I don't know.
What is certain, I would say, is that you need to raise your dose of NDT.
I can only increase very slowly as when I tried 2 grains a while ago when my T3 was at 5.4 I got a strange reaction a few days after the increase, whereby my body started to itch and prick and I woke during the night and my whole body felt as if was on fire, so I reduced back to 1.5 grains
My T4 has always been below range on NDT. I understand it can be low but not sure if it should be under range.
I have only ever felt slightly better on NDT than I was on levo. but since the "virus" I have felt worse.
Another strange thing is that two weeks after the above blood results I did a FT3 test and it had increased to 4.4 and this was before the increase of my NDT.
Thank you so much for sharing your insight. It will be very helpful for me as I have these same issues. Some Doctors really dont know what they are talking about. I have never considered gluten free diet, will try that. Thanks again.
50mg and then raised every 4-6 weeks until you feel well! That TSH is horrendous I can't imagine how unwell you are feeling.
A high TSH is linked to fertility problems, miscarriage...so important to address quickly. The hypothyroid mom website I've put a link to has fantastic info.
I have papers on links to pcos I'll try and find them for you.
You need to get it down to under 2 but ideally under 1 to feel well.
You also need your thyroid antibodies tested for a Hashimotos. Which is Auto Immune and very common. Very important!
Also Folate, Ferritin, B12& Vit D are all likely to be low as runs hand in hand. Get tested.
Folate& Ferritin need to be mid range.
B12 over 600 at least. Under 500 can start to cause neurological changes.
Vit D 60-100 no less.
Your Dr will tell you your levels are ok at much lower levels so make sure you get a printout of results.
If they don't want to do them then
Bluehorizonmedicals.co .uk do private testing.
Thyroid plus 11,12&15 are all good comprehensive tests. Not cheap but so worth it to get results.
Offer code insideout7 gives 20% off this month.
Hypothyroidmom.com is a really good website for you.
Wow im bit blown away by the info. I didn't realise it was sooo detailed.
An the fast response! Thank you soo much for the help.
I was only borderline over and doc said come off. The flares with the antibidies sound about right. I was really super hormonal at the time and suffering with my fertility issues & stress from work.
I'm going too stick too the 50mgs for now & get re tested. Bloody doctor has jepordised my operation i waited 7 months for now . As clearly he's not knowledgeable.
Blood dept said they're referring me too endro so thats positive.
Should i request T3 and antibody test now or wait 6 weeks?
Thank god i've found you guys. Thought i was loosing my marbles.
Just wondered i have done diary free for a year & now i'm back on it. Will this then benefit if i'm diary free again?
Without seeing any thyroid function test results it is impossible to say whether or not you need T3. It depends on whether you convert T4 to T3 well or not.
If you have already started taking Levo again, then I would suggest getting tested in 5 - 6 weeks. Don't let your doctor drag things out more than that. Unfortunately the chances are quite high that your doctor will only do TSH. Ask him for tests of your thyroid antibodies as well as Free T4 and Free t3 at the time.
The NHS rarely tests both forms of antibodies that are common in Hashi's. They usually test TPO antibodies, but consider Tg antibodies to only require testing when cancer is suspected or cancer treatment is being monitored. But patients who have done private testing have discovered that positive/negative results can occur in either or both types of antibody, and cancer is not always an obvious issue (as far as I know - what I know about thyroid cancer would fit on the back of a stamp).
You can get private testing done with a finger-prick test from Blue Horizon Medicals and Medichecks. people usually get their results back within 1 or 2 days from when the blood is received by the lab, but it does depend on the tests that are ordered. See the following links :
If you want more info on how it all works just ask.
Regarding dairy-free... If it didn't make you feel better first time round then it isn't worth starting it up again. But if it helped then yes, go back to it if you want to. You might want to try going gluten-free before trying dairy-free again, but it is up to you.
Then the blood test measured the TSH with the meds in your system, you need to have a blood test without meds being taken for the previous 24 hours. As early as possible and with just water to drink, no food until after the test. I hope you get this situation resolved.
OMG, 50mcg? Try 150mcg! I'm afraid your biggest problem is that your doctor doesn't know beans about the thyroid. I think the first thing you must do is change docs.
But regarding my hyperbolic suggestion of increasing your dose, please follow the brilliant advice you have been given above.
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TSH high on 100mcg Thyroxine ferrtin low advice please 
Should I go private or NHS?
Is it possible to go overactive on levothyroxine?
TSH has dropped to 0.01- what do I do about it?
