Didn't sleep last night, waking with palpitations. Suffer on the ceiling anxiety and shortness of breath. Symptoms for 10 years. TSH 5.58 mU/L in December 2014 and T3 3.9 pmol/L (done in hospital). March 2015 TSh 2.78 mU/L, no T3 done. Post menopausal, hot flushes rampant.
Antibodies were high 10 years ago (is this hashimotos or hypothyroid). Can anyone give advice as to why TSH has changed when on same dosage. Other tests were normal ie vit D 159 nmol/L, B12 1500.0 ng/L (recorded as HIGH). I supplement Vit D as diagnosed with Hypocalcemia and Secondary Hyperparathyroidism and Vit D deficiency. I also supplement B12 and have started iron in last two days as per advice here. I reduced calcium intake over 2 years ago from 1000 iu to 200 mg as I felt unwell on them. Posted all other tests here and advised normal. Is it normal for TSH to go up and down like this. I'm very tired, have almost permanent palpitations except when sleeping, wake at least 6 to 8 times a night and feeling more tired than ever. Been on 50mcg thyroxine for 8 years and not experiencing any benefit ( feel over medicated if I try to up dose). Prof said in December (TSH 5.58 mU/L to up dosage in very small quantities, after telling me T3 wouldn't help. Went back to gp and had all major tests done and he says TSH is now fine at 2.78 mu/L. I am on benzodiazepines, which I have reduced by around three and a half mg over a year. Changing my diet slowly to no wheat, gluten,sugar,dairy, a slow process. I'm at my wits end and have started to feel depressed on top of the anxiety. Starting to think maybe doc was right not to put me on Levo 10 years ago. I saw an endocrine consultant privately then and he suggested a trial up to 75 mcg, as my TSH creeping up and antibodies positive. Just to say, Have had lots of Adrenal tests (Genova) over the last 10 years varying from low to high and always HIGH DHEA which they dont seem to be able to give an account for. Tests, Celiac and Synachten and also for tumours that cause palpitations, I'm at a loss.
Sorry to ramble. It's early days for iron supp, second time around. Thanks for any further advice.
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islandgirl1986
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I am no expert but I think you are suffering from an iatrogenic illness (that means 'doctor caused). To give someone ten years ago a dose of 50mcg and keep you on it - not add some T3 to the patient's dose (I know the BTA don't agree with that but I doubt if any of them have hashimotos) that's what you have and it is an Autoimmune Thyroid Disease caused by your antibodies attacking your thyroid gland till you become hypothyroid.
Some people do not feel well or get well on levothyroxine alone and sometimes we don't realise it could be the fillers/binders in the levo which could be causing a problem. Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article in which Dr Toft (ex President of the BTA) says if you have antibodies:-
"Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.
If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration. "
For the professor to tell you that T3 wouldn't help you in December '14 is so wrong. Considering that you are now (I believe) hypothyroid and are willing to prescribe benzodiazepine (for which there is no blood test to prove) in addition to T4 but not T3 which has also been proven to help depression (no wonder ) you're suffering. Your TSH is till TOO high. Why cannot these doctors/specialists be educated. Maybe if they had personal experience they would be onto NDT before you could say Thyroid.
This is another excerpt from Dr Toft and take a copy to the doctor and demand that a trial of T3 be added to your levo. I found T3 extremely calming because when I was on levo I was in and out of the A&E like a yo-yo with severe palpitations. Not once since on T3 only. First you will see how low your TSH can go (below 1), You have clinical symptoms of hypothyroidism:
6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?
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).
Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added."
(The 10mcg Dr Toft suggests is out of date and should be 20mcg but you can start with 10mcg (if you're lucky).
I hope you feel better soon. After ten years of ill-health you are entitled to a decent thyroid hormone or sufficient to improve your health. Do you take a note of the levo you get from Chemist as some makes suit us better than others (fillers/binders) and the chemist will keep a stock if one improves your health.
When you get a blood test for your thyroid hormones, make it as early as possible, leave 24 hours between levo and blood test. Take afterwards. Also get B12, Vit D, iron, ferritin and folate checked as well.
Our TSH varies throughout the day and it's highest in the morning (yours is high anyway although they declare it 'normal'. It might be in the normal range but, my view, is that if it is above 1 it's not normal.
"If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration. "
I've never had positive antibodies (and I've been tested several times) and I felt extremely ill with a TSH between 5 and 6. My FT4 and FT3 were also bottom of range. I take T3 only and I'm not 100% well by any means, but I'm a huge amount better than I was before I started thyroid meds.
Well, personally, I think that an Endocrinologist who says 'wait until your TSH is 10 - then (lucky thing) we will give you some levothyroxine'. That's my translation.
When you think of it. it is ridiculous but it is still in the BTA's awful guidelines. Pity on us poor souls gasping for the want of a decent amount of thyroid hormones. This is an update of the guidelines BTA:-
DIAGNOSIS OF PRIMARY HYPOTHYROIDISM
(a) The symptoms of hypothyroidism are very common, both in many other conditions and even in states of normal health. It is therefore essential that thyroid function is tested biochemically alongside a careful clinical assessment of the individual patient. Clinical symptoms and/or signs alone are insufficient to make a
diagnosis of hypothyroidism.
(b) The only validated method of testing thyroid function is on blood, which must include serum TSH and a measure of free thyroxine (T4).
(c) There is no evidence to support the use of thyroid hormone testing in urine, saliva, etc or the measurement of basal body temperature in the diagnosis of thyroid dysfunction.
(d) The results of blood tests for thyroid function can be influenced by other factors, for example in some illnesses which do not permanently damage the thyroid gland. In this case the tests will return to normal after the illness and thyroid hormone therapy is not needed (and can be harmful).
****
Dr Skinner and Dr P both who were trained around the same time, i.e. clinical symptoms and NDT. Yet (d) above doesn't make sense to me nor to doctors trained pre-60's.
I, for one (and probably many others) complain and complain - eventually - pay privately for examinations - then admitted to the A&E cardiac Dept heart playing up - discharged as fine. Demand of the GP that I wanted to pay for a 'full body scan' (heart playing up too) as there is something seriously wrong - only to be patronised. Not one ENT (saw 2) diagnosed me: one did an exploratory for a 'web' in throat after barium swallow (no web). Well what was on the Barium Swallow X-ray I asked - no answer and sent on my way. The other 'reflux' - cost me £300. Finally, a first aider suggested 'thyroid?'. What on earth is that was my reply. TSH 100. Then began the next horrible episode - levothyroxine.
Dr Skinner was horrified at the guidelines nowadays and wrote to all the Endocrinologists about the 'parlous state of affairs' for patients but the BTA seem to be in some Ivory Tower - away from the nitty gritty of sick and suffering patients. Not one had the courtesy to accept Dr S's invite.
There must be thousands of people undiagnosed because the TSH never reaches the magic number - 10. Or, once diagnosed, kept within the 'range' TSH up to 5 and told they are 'fine' - nothing to do with they thyroid gland.
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