I got hypothyroidism at the age of 11 because I was shaking uncontrollably, t3 and t4 were checked and I was prescribed thyroxine which went up over the years too my current dosage 150mcg a day.
I have always been a healthy person dont smoke the odd drink but nothing excessive.
Since I was 20 my weight and general health has dropped when it has now got to a point where i feel that I must be seriously ill.
I have a sensitivity to light the opticians say im my sight is fine, my eyes water randomly get red and very sore I was told to use eye drops which didn't do anything.
My main concern is my weight over the last five years I have lost 4.5 stone and eat so much food and I am a rake of a man now. I have always kept fit but to work out at the gym I find painful and instead of putting On weight I seem to loose it, I used to work in a slaughter house carrying around cow carcases now I struggle to lift a heavy bag from the supermarket. Every time I go to my doctors they just say maybe you lost weight due to getting a cold I have diarrhea frequently too.
I have had heart problems for the last three years now a slight heart murmur and at the most random of times my heart goes nuts get like an anxiery attack is the only was to describe it but I am not an anxious person.
I have baffled on here I know its just its 5/6 years worth of putting off and neglect on my part the symptoms are from the last few years and I am now unsure what to do I feel like falling asleep and not waking up because its so draining.
Not to mention insomnia headaches swelling in my throat so bad that its becoming difficult to swallow.
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tickerprice01983
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Hi The first thing i would do is make sure you have had a thyroid test TSH T4 and Free T3.recently.My endo tells me it is possible to become over active on treatment. it could well be that you are not absorbing food my lver consultant ( Hepatologist ) is much better at the conditions around the waist.There is no pain as it is pancreatic enzymes. my brilliant endo did. diagnose it.( not really her field) There is a simple test for absorption, which is a stool test, called Facael Elastase,It comes back idiot proof. If low you need to take enzymes 20mins before food. 1 or 2 depending how severe and size of meal. I have these on a script but are not drugs, very safe. My endo said that the same ones are sold at Holland and Barrat. Of course, like most things they take a while to make a difference.
Regarding the heart, If you give me details, I may be able to give you some ideas.if very ill with anything , yes you loose weight, I have severe serious heart conditions and end stage heart disease. if breathless, that is one of the signs to have it investigated.The other is if pulse ( HR) is uneven at times. Often as ECG not a lot of use,echo better. however the only real test for rythmn problems is a home monitor ( Holter) for 24 hours or better 7 days ( GP or Hospital arranges). Make sure you ave been tested for ferritin, B12 and Folic acid, vit D and especially diabetes 2 bloods ,all blood tests
I presume you have had a total MRI? otherwise you need one, just to rule out cancer.For the sawallowing, I expect you have had a gastroscopy, ( otherwise should ) but did you also have a very sopecial pancreas investigation ( different to the enzymes )? This is done by a specialised radiologist at large teaching hospitals.you also need an ultra sound to look for an enlarged thyroid possibly with nodules, If so a Biopsy just to be sure. Often you need to remind the GP etc when you see them of relevant conditions.I am sure you are taking dairy products and high value food.
I hope this has given you some ideas... If I can help further either send me a PM ,click on picture,or to reply on site click on my name
I asked about vit d and b12 the gp said he knew what tests to run first was quite obnoxious to be honest. Thank you for taking the time to answer my questions
Hi Ca is calcium, CRP measures white cells but not the usual one That is ESR FBC full blood count, should give an indication of Ferritin but not the specific test.FT3 is Free T3, My NHS lab always refuses to do this, penny pinching so, I have to pay for it. you really need that for your thyroid,GF Can be to do with pregnancy (!!!!) but also Caeliac disease, not too reliable , make sure you are on gluten for 2 weeks before the test, even so , some people find test negative but still cannot have gluten My endo had a paper in BMJ on this.L is for Lupus, auto immune too, TF normally referred to as TSH, + T4.( thyroid) The lab if U`s and E`s kidney function but very common basic test, tests importantly cover Potassium and sodium ( both electrolytes and calcium is and magnesium) they must always be in range for heart and kidneys.For kidneys most important result is GFR, 60 + fine but lower not too good,( part of U`s and E`s) mine always low as kidney failure. If 25 acute kidney failure, coma etc.LFT is liver function, they usually only do a minimum for this but there are lots, I have liver disease, too , never drunk, Hepatologist best if a problem. Some can be out if diabetic, Mine are. With weight loss you also need A glucose, fasting test if told ( varies) and a Hb1ac test. loss of weight can be the only symptom It is hormonal and autoimmune I hope this helps. You need all the ranges as they do vary at different labs as depends on the assay.Results easy to read then as anything out will have a star or similar. If things a bit out may not matter.
You must persevere and sort out the doctors if needed, I speak from long experience of some useless doctors, some very good, thank goodness!I was first referred to a Hepatologist because of vast weight loss!
Had a letter through today saying t3 and t4 results are within range. I will go to gp's on Monday and get a print out of results but looks they haven't done the free t3 as was requested!
Jackie may be right, but as you are on thyroxine you need to start with the obvious. You sound just like me when my thyroid was OVER-active, not under-active. That could be because you are being over treated.
In addition, the problem with your eyes sounds like thyroid eye disease which I also got when I was over-active. The lump in your throat could be that the thyroid is swollen inwards and causing discomfort. I also used to shake when I was overactive. You need to get an endocrine appointment as soon as possible, to be sure,
I am speaking from personal experience when I say that this sounds very much like thyrotoxicosis, it also caused me to have a heart murmur. I would try reducing my thyroxine to 100 daily quite urgently to see how I felt, if I were in your situation,
I am no doctor but I have been thyrotoxic twice and I felt exactly as you are feeling. Please don't let this go on any longer.
I asked about vit d and b12 the gp said he knew what tests to run first was quite obnoxious to be honest. Thank you for taking the time to answer my questions
Ca is calcium, crp is c-reactive protein and gives an indication of infection, not sure about esr, fbc is a full bloid count, ft3 is free t3, gf not sure, hdl is high density lipoprotein and essentially cholesterol, l not sure, tft thyroid function test, u&e is urea and electrolite which looks at kidney function, and lft is liver function test so your getting a full work up there and i would be surprised if they wont find something with those and your symptoms
If you haven't had a recent thyroid gland blood test - get one as soon as possible. Ask your GP if he will do the full range TSH,T4,T3. Also ask for a B12,VitD, iron, ferritin and folate.
If you have had a recent blood test get a print-out from your surgery complete with the ranges (figures in brackets) and post again for people to comment on them.
You are a young man and I am sorry you have been ill since 11 years. I am not surprised you feel there is something more serious but if your thyroid hormone is 'out' it can contribute to whole range of other symptoms as it affects your whole body - not just one part.
Have you ever been under the care of an Endocrinologist or were you referred back to your GP when your thyroid levels looked o.k.?
Even so, I am surprised your GP hasn't referred you for further investigations. It's not up to us to guess what is making us unwell - we should rely on the medical profession.
Normally, we are apt to take the GP's word until you discover that they don't always know about treating thyroid conditions properly.
Don't worry as once you get properly assessed with the correct medication you should begin to feel better.
I am glad you have come onto our forum as you will get the support to enable you to get better.
I asked about vit d and b12 the gp said he knew what tests to run first was quite obnoxious to be honest. Thank you for taking the time to answer my questions
I have to agree with others that your levothyroxine dose could well be too high.
There are several published formulas which try to estimate how much a person would need if they had a total thyroidectomy. I have created a spreadsheet which works these out. (Link below if you have Excel or OpenOffice or some other spreadsheet programs.) This comes up with a range of possibilities from 122 to 197 mcg a day. But this is based on you having absolutely NO thyroid function left. So is very likely a significant over-estimate.
Further, these formulas use weight as a major factor. As you have lost weight, your dose almost certainly should have been reduced. But that would be based on testing rather than a blind formula.
Also, if you have changed make of levothyroxine, that could have make a big difference to your dose. The Teva brand 50 and 100 mcg tablets were withdrawn from the market last year because they were not delivering the right amount. If you had been on them, and switched to Mercury Pharma (Goldshield) or Actavis, then you could have had a very significant effective dose increase.
I would start by getting hold of blood test results going back a few years (if possible) - and including the reference ranges. That is, assuming you have had annual tests? This link explains your rights:
If you are going to reduce dose, it is best to do so with support from GP and slowly. We see all too many people have their doses reduced by far too much and swing from being slightly over-dosed to seriously under-dosed. Which is NOT good.
The above really applies if the issue is to do with thyroid. Which seems possible, even likely, but you must not ignore the alternatives. It is quite possible that you have two issues going on.
I would really like to see you being tested for a range of things - starting with an ordinary Full Blood Count and a new set of thyroid tests. Ideally having vitamin B12 and folates.
Frequent diarrhoea is not good. Your gut needs to be investigated - especially if you reduce levothyroxine and yet continue to have it. It could be all sorts of things such as Coeliac disease. Trouble is, you might be failing to absorb things properly from your gut and therefore suffering low levels of all sorts of things.
Do come back - hopefully with some results.
Oh yes, if you decide to reduce dose, if you take a 100 and a 50 every day, you *could* either cut the 50 in half (get a pill splitter) or take 150 one day, 100 the next and keep on alternating like that.
I think you are giving good advice Rod, I should have said 'start reducing'.
Just as a matter of interest, my doctor cut me from 150 to 100 'just like that'! But when I finally wore him down to restore the dosage he said it would have to be done gradually! Double standards or what?
With rare exceptions, adjustments to thyroid hormone doses should be done slowly. The medics do not have the faintest idea about things. They do not understand that you simply cannot look at TSH and FT4 and a current dose and predict the effect of changing the dose. You can predict the direction- but not either the time it will take nor the final point it will settle to.
I asked about vit d and b12 the gp said he knew what tests to run first was quite obnoxious to be honest. Thank you for taking the time to answer my questions
Most people here never get an FT3 test however much they ask for one. Some have GPs they have persuaded to put in a request for one, but the lab simply does not do it.
Most of us suspect it is simply a matter of cost - and if the lab can reduce costs by not doing tests, then they do. And many doctors and labs seem dismissive of the meaning of an FT3 test.
I am very pleased to see it and hope it does get done.
I generally have ft3 because that is how I was diagnosed when I was eleven. My range comes back as good with normal tft tests. Only shows with ft3 I have no idea why problem like you said is over the years i have bloods done and labs don't do the ft3 test when I get results even though gp has requested for it to be done.
Thank you for taking the time to answer my questions I have an appointment tomorrow with my gp where hopefully I can start to get to the bottom of this. I was started to feel like I was going crazy. I shall keep you informed of any progress.
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