In may 2012 I was wrongly told that my Thyroid had tipped into the underactive range, when, after doing some research , I realised it was totally normal. I have changed GPs by this time and although on 100mcg of Thyroxine, my readings were in the normal range, my new GP looked back, saw the original normal reading and immediately stopped my Thyroxine. From there, my readings shot massively into the hypo range, probably as a rebound of coming off the Thyroxine. 4 weeks later things were still slightly hypo but more level and I need to get another TFT done to see if its gone back to normal. The thing is, I'm so exhausted all the time and can't stop sleeping, so I'm off work sick at the moment. Could this have anything to do with being on and off Thyroxine?
Thanks
G x
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Gayleth
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Yes it would be very helpful to see your results when you were first put on thyroxine and your latest results please.
Yes it is very likely that you are feeling so tired due to coming off thyroxine. If you really were put on thyroxine unnecessarily, then hopefully your thyroid will bounce back and start making enough thyroid hormones for you again.
It could be the rebound effects from thyroxine, which should resolve, or it could be that your first GP was actually very good and spotted that your TSH was at the higher end and your thyroid hormone levels at the lower end and that you therefore needed thyroxine replacement. Your new GP may have been less knowledgeable and seen that your TSH was below 10 and decided that was normal (it could have been far from it) and decided to stop your thyroxine even though your results were normal.
Over recent years doctors have been reluctant to treat anyone with a TSH below 10 even though they have symptoms of hypothyroidism and other countries treat if the TSH goes above only 3! It would be very useful to see your original results. Your first GP may have been right and given you the treatment that others would have waited until you were much worse to prescribe.
Whichever is the case, I hope you start to feel better soon!
In May 2012 my TSH was 2.21 and my Free T4 was 13.2. This was when I was told my Thyroid was underactive and I needed Levothyroxine.
I don't have copies of all my results but in Nov 2012 while I was on 100 mcg of Thyroxine, my TSH was 0.02 and my Free T4 was 17.6.
In Feb 2013 after I was taken off the Thyroxine, my TSH went to 12.7 and Free T4 to 8.0.
In March 2013 my TSH was 6.87 and my free T4 was 10.8 so the levels seem to be readjusting but I'm so exhausted all the time. I haven't been in work since the end of January, have felt extremely depressed, thought seriously about suicide and don't feel like I can carry on feeling like this.
I am assuming that you must have had a positive anti body test for any GP to treat you with T4 with that TSH. However, your TSH now and your FT4 are now in the hypo range.
How did you feel whilst on the T4? Have you had any other tests for vit D, B12, Ferritin/iron?
Are there any notes that go with why the Dr decided to prescribe?
Your original doctor wasn't necessarily wrong. You haven't given reference ranges but it looks like your T4 was towards the bottom of the range (possibly even low) and may well have been giving you hypo symptoms. He is obviously more open-minded than most doctors and has seen that your TSH is high-ish within range (it's a logarithmic scale) and your T4 is low end of normal (linear scale).
I think what might have happened is that you were borderline hypothyroid and your GP felt it wise to medicate. He may, however, have put you on too high a dose for your needs at that time. You may have found that if he hadn't treated you, your thyroid function would have deteriorated over the years anyway.
It will be interesting to see what your thyroid does over the next few months but with those results you are unlikely to get treatment even if you do need it. Unfortunately it seems that your original doctor was one of the few who treat the patient where thyroid is concerned.
When you were originally put on thyroxine, what symptoms did you have? If you had none, it would be unusual to prescribe unless antibodies were present in which case thyroxine can help.
Depression is a very common symptom of hypothyroidism. I'm sorry you are feeling so bad but if you do feel suicidal again, please remember that the Samaritans are excellent and there are other organisations that have help lines too.
I really hope you start to feel better soon. If your thyroid tests don't improve in the next month or two, please consider going back on the thyroxine but a lower dose than before (25-50mcg is a good starting dose).
My antibody test has come back negative. My ferritin was 9 but HB was in normal range so GP told me I wasnt anaemic. Ferritin is now 14 and B12 is normal. Not had a vitamin D test.
Your ferritin is very low! It should be above 70-90 for a woman and even higher for a man. You may not be anaemic but you have almost no iron stores. When this happens your body has no resilience for those times when you need more iron.
When you say your B12 is normal, if it is below 500 you need to be supplementing. The NHS ranges seem to be very low and I suspect this has something to do with their obligation to prescribe injections (they don't prescribe injections unless it is under 200 which is far too low!) If your B12 is below 500 you could develop serious neurological problems.
If your ferritin and B12 are low you are probably not using the thyroid hormones that you have in your system. Both are needed to get thyroid hormones into the cells to be used. Deficiencies also cause symptoms similar to the ones you are describing. You may actually be hypothyroid but because your iron and B12 are low you are not using what hormones you have. You really need to take iron with vitamin C and a sublingual B12 supplement of around 5000mcg. I have felt much better since doing this.
A vitamin D test would be worth doing as a deficiency can cause many of the symptoms you describe. I was deficient last year and found that supplementing has helped some of the symptoms.
From what you have listed above I am not surprised you feel so awful! I'm not sure I'd be able to function at all. Please consider the above supplements (iron, vitamin C and B12) and perhaps a B vitamin complex as you are likely short of other B vitamins too.
Wow. Thank you all so much. I've had my driving licence revoked by the DVLA because the doctors don't think I'm fit to drive, I'm a teacher, but can't work because I can't stay awake when I get home from school and therefore marking, planning, writing reports etc has gone out of the window, along with my social life, so I'm trapped in my house feeling knackered, sleeping, and if I go for a walk, or get the bus to town, I need a 2 hour nap when I get back.
Life is pretty rubbish right now but your advice has given me another possible avenue to explore. I thought that once I was off the Thyroxine, because I didn't feel much better on it, that I wouldn't feel much different off it, but I feel awful.
We don't often hear stories of your type but I am surprised your GP didn't at least taper your T4 down gradually. This is normal for other glandulars like cortizone. I would think it hard for your body to accelerate your own production of T4 as quickly as you put the brakes on an outside supply.
if your thyroid doesn't show any signs of recovering you may need to go back on thyroxine. Perhaps it was a bit severe to come off it completely. They could have reduced it by 25ug and waited to see if your thyroid showed any signs of functioning again. your original results look mildly hypothyroid.
You are going to feel really bad without thyroxine and your thyroid may or may not start working. Is it worth what you are going to go through when there is no guarantee your thyroid will start producing enough thyroxine again?
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