I had a Thyroid test 10 years ago in Germany - they diagnosed me with Hashimotos (TSH was borderline, T3 and T4 normal and I had antibodies - they did not, however put me on meds other than the pill due to irregular periods and at that time suggested that I will become hypo at one point).
I then moved to the UK shortly after and they had to go through all the checks again (which came back ok) and then I had the odd Thyroid test ever since (especially when I was feeling unwell) but it always came back "Normal" (whatever that means...). I want to add that I suffer from chronic stress and unless I stop working I will not be able to get rid of it - I have tried so many things but don't seem to cope very well on the whole.
So in March I had another test as I was feeling really unwell and lo and behold my TSH was 10.3 and my T4 was in the normal range - so they classed me as hypo. They explained to me that my pituitary gland is working extra hard to keep my levels normal so I should be put on Thyroxine. No test for T3 or antibodies nor any mentioning of Hashimotos by the way. Just a "here are some pills, take them for the rest of your life".
Now I took them for 2 months and then had to have another blood test. My TSH came back at 2.4 (!!!) - Is that even possible that it would drop so significantly within 2 months on 75 mg? I had to visit my GP in between and he even said that I probably need more as my levels are quite high. Now after the test the next GP tells me it wasn't that high anyway so that's quite normal. I mean, no wonder people are getting annoyed and turn to alternative medicine if you get conflicting answers..
I am feeling a bit better but I always do in spring but I also have been trying to lose weight and I am quite overweight (200 lb) and I lost a lot of weight in the past (until it came back) so I know what to do to lose weight. But the scales are not budging..I also increased my activity levels. Technically, the pounds should maybe not melt off but I should be able to see a significant difference. I am a bit frustrated right now and I can't afford private testing at the moment for T3 or anything else and my first GP said they won't do it (they did in Germany without even asking..but then, they also wanted to take my Thyroid out ..lol..overkill much)
I am grateful for the NHS but I sometimes wonder what the point is of GP's - everything they tell me I can find by googling myself. They did not refer me either but I am not sure if you always get referred to and Endocrinologist when you have abnormal TSH levels.
Any suggestions?
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beaudy1983
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You are undermedicated to have TSH 2.4 on 75mcg Levothyroxine and that will make it even more difficult to lose weight. Ask for a dose increase. Hypothyroidism is usually managed in primary care in the UK unless the patient isn't responding to treatment and FT3 is rarely tested in primary care now. Once you have tested positive for thyroid antibodies there isn't any point in retesting because autoimmune disease has been confirmed and antibody levels will fluctuate.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Thank you so much for the useful reply. It sounds like 2.4 is still too high? The GP very much responded like this was a normal level (because it is below 4) and I am worried that they will now leave me on this.
So do you think that sudden dip was normal though)
Thank you for the links - Funnily enough I was on a 10 Day Detox a week ago and I was eating 100% Glutenfree (besides other things) and felt better for it but it might have been the sunshine too..lol
It wasn't a sudden dip. It was the appropriate response to taking 75mcg Levothyroxine for 8 weeks. If you are told 2.4 is normal point out that so is 0.35-1.0. Do get a copy of the Pulse article to show your GP.
We have to read and learn ourselves if we want to return to good health.
Apparently it is thought easy to treat and Endo isn't necessary in many cases. Most doctors think that prescribing levo and getting patients' TSH with the 'normal range' that anything else we complain of is 'not due to thyroid' when it most probably is as our whole metabolism relies on thyroid hormone replacement for our body to work efficiently.
It is thought that it is easy to treat hypo patients i.e. just prescribe levo and when TSH is in range any other symptoms which occur is not due to the thyroid gland.
Weight gain is the commonest question. Initially it can happen before we are diagnosed as our metabolism has lowered so much or It can be due to levo alone if not on an optimum.
The aim of taking thyroid hormone replacement is to reduce TSH to 1 or lower and to have a Free T4 and Free T3 towards the upper part of the range but, most important, is for the patient to have relief of all clinical symptoms and feel well.
Blood tests have to be at the earliest possible, fasting (you can drink water) and allow a gap of approx 24 hours between hormones and blood test and take afterwards. This helps keep TSH high as that's all doctors rely upon.
Ask GP if you can have Free T4 and Free T3 test and I'll give a link below to read why these should be included.
Your TSH can come down quite quickly when on thyroid hormone replacements i.e. Levo or other thyroid hormones which would have to be sourced privately. Ideally a TSH of 1 or lower is fine. Don't believe what they tell you about getting heart disease etc unless you are very frail indeed.
Ideally, we need TSH, T4, T3, Free T4, Free t3 (you have an Autoimmune Thyroid Disease due to having antibodies - but it is the same treatment).
Ask also for B12, Vit D, iron, ferritin and folate as they can be deficient with symptoms. GP should do these but maybe not the Frees.
Always get a print-out with the ranges and post for comments.
Also if you exercise, it reduces your T3 until you are on an optmum of hormone replacement which in turn can make us symptomatic. Levothyroxine is inactive and has to convert to T3 the only active thyroid hormone required in our receptor cells so if it is reduced we don't feel so good.
Thank you - I will check again if I can get the all the tests but maybe I will have to pay...I wonder if the prick test is any good that has been mentioned on the Thyroid UK site. I am actually not exercising massively but I have increased my walking quite a bit (between 10000 - 15000 steps) and that's quite tasking. I have no energy to do anything else at the moment .. In fact, even in the past when I did more strenuous exercise I would end up being totally depressed and crying a few hours later or totally stressed for many days. I am trying to do things slowly but even if I don't do much I always have an underlying stress-feeling. The GP sent me to this course and its the usual advice - but not helpful for me really. All the relaxation stuff just makes me even more stressed. Argh!
I will have a little browse through the links - My blood tests from March did come back ok apart from the TSH (but I cant remember what else they tested - BUt I know Diabetes and Cholesterol was fine)
Gentle exercise is recommened until we are on an optimum dose which makes us feel well. I have lots of energy now and can do anything I want and don't flag.
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In fact, even in the past when I did more strenuous exercise I would end up being totally depressed and crying a few hours later or totally stressed for many days. I am trying to do things slowly but even if I don't do much I always have an underlying stress-feeling. The GP sent me to this course and its the usual advice - but not helpful for me really. All the relaxation stuff just makes me even more stressed. Argh! 
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