Hi all, I have ended up on this forum out of despair like many others here, its a long story but after reading I would appreciate some advice, as I am at a loss as to what to do or where to go from here.
Here goes:
2 years ago I started to feel unwell, had severe pain in my feet, accompanied by burning, felt very low, and started to put on weight, I also had little sex drive and could sleep forever and a day, eyesight was also getting worse, despite eye test which showed no change.
I went to the dr on various occasions and eventually it was found that I had a vitamin d level of 12, had to fight to get a course of vitamin d as dr said they didn't prescribe as it was a "designer drug" same dr said my thyroid test had come back as borderline abnormal, and said re test in 6 months.
In the meantime I took the vitamin d and was referred by a different dr to a rheumatologist who said that x rays show minor arthritis in my feet and that he thought the burning in my feet was due to a nerve issue (no tests, he just thought) he wanted me to take amitriptyline the anti depressant to supress what he thought was a nerve problem.
I told him I didn't think this was the issue and that I would not be taking a drug which had a side effect of drowsiness when I felt bad already, told I need to see a podiatrist, and have physio on my feet and knees (awaiting these appointments and currently on waiting lists) he suggested a new blood test for vitamin d and said I should go on a high dose for a while, as this would help with the arthritis, said he would write to dr and advise this.
I got the level back and dr said at 62 it is perfect (although previous low reading dr said it should be 72?)
In the meantime I had started to read that burning feet could be an issue with the thyroid and alongside my other issues such as tiredness, no sex drive, 2 stone weight gain in a year and low vitamin d decided to ask for another thyroid test.
I rang for the results yesterday and receptionist said tests within acceptable range all except my cholesterol test which is high, I asked for the actual results and she refused to give them to me.
I have since read that high cholesterol can also happen if you have a thyroid issue.
Where do I go from here? receptionist wont give me my levels, so I could be what they call borderline abnormal still (which previous dr said was just under level before)
I cant continue feeling like this, my marriage is now in trouble as apart from the fact I don't want sex I have no interest in life at all, I am not depressed, just low because I feel like I have changed so much in the last 2 years, I feel frustrated because I have gone from a woman who is 44 to feeling as if I am 80 years old, the weight issue is also getting me down, as is the memory loss which I seem to have.
Should I be allowed to see my levels of the tests? can they refuse to give me the actual ranges I have.
Does anyone have any experience of this burning foot issue? or eyesight getting worse, or raised cholestorol
I think my issue is down to being hypo, but I am having a hard time with the dr's and with my marriage on the rocks now I am at a loss as to what to do, why don't the dr's help people instead of making them feel that they are making a fuss over nothing.
Also what does anyone advise about my vitamin d level?
A lot of questions I know but I cannot go on like this anymore.x
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little8571
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You have every right to receive your test results. The receptionist would need the GP's approval but if the GP has seen the results you cannot be denied them. Unfortunately the practice may charge you for a print out.
You need the results and the ranges.Talk to the practice manager and demand them.
Post them here and the good folk will respond.
As Justina has said the other tests are also important and if not tested you should see your GP and ask for the tests.
B12 deficiency can cause the sensation of burning feet. Do you know if that's ever been tested? Don't be tempted to start supplementing before the test though - it'll skew the results.
But in any event, you're right to believe that your "borderline" thyroid results are worthy of further investigations/treatment.
As Treepie said, you do indeed have the right to see your results, and if they want to charge you for a printout, you may be able to get around it by asking to see the screen and writing them down on your own piece of paper - get the results and the reference ranges, as the ref ranges vary quite a bit.
Don't lose hope - it can take a while to get somewhere with all this, but it really is worth persevering xx
Thank you all for your reply's, I do not think that I got a b12 test done, but I could be wrong as my Dr does not keep me informed, I am at a point where I am the one begging for tests to be done and like many am being treated badly, the Dr even said to me that the arthritis in my feet would just cause minor pain......this made me cry because how do they know how much pain I am in? My burning feet get so bad they feel like they are on fire especially at night and then walking becomes an issue, many of my joints are hurting which is why they originally thought I may have rheumatoid arthritis.
I think I will pop into DR's today and ask for my actual ranges, if I am entitled to them, that way I can then post up on here the results and someone may be able to tell me what they mean and what they think.
I had burning feet - just the soles in bed at night - for a couple of years. I had to lie with my feet against a cold wall to cool them down so I could get off to sleep. This stopped when I began thyroxine. I also had high cholesterol but don't know if that has improved with treatment.
I am older than my age - I have been mistaken for my mothers friend and my husband's mother!
As others have said, first get your results, post them here and you will get some excellent help from members of this forum.
Yes that's what my feet feel like and have done for 2 years, they feel internally like they are very very hot and it keeps me awake alongside the pain.
I will be ringing the surgery shortly to see about how I get the results.x
You can write formal letter to your doctor, stating that under the 1998 data protection act you are entitled to see the results of any tests you have had, in say, the past 5 years. Ask for the results of thyroid function, b12, d3 ferritin,iron ad folate tests. Enclose a stamped addressed envelope. Send one letter to the doc and copy it to the practise manager.
In the meantime you can get a comprehensive set of private tests from blue horizon for £99. healthunlocked.com/thyroidu....
You should suppliment your low vitamin d with some d3. And whatever you do, don't take statins if you have a thyroid problem. You are correct in thinking low thyroid equals high cholesterol.
Ha ha this video could be my Dr, seriously it could, and this seems to be the norm from what I read on here, thanks it cheered me up a little.
Are my vitamin D levels low at 62?, I was previously at level 12 that was 6 months ago, was at that time told they should have been 75.....after a fight (not literally) Dr gave me high dose vit D 50,000 once a week for 6 weeks, as they agreed it would help with the bone pain I have been experiencing, they did no re test, just stating that I should then use over the counter vit D, so I then bought some over the counter vitamin D, which I take 1 a day.
The recent vitamin D test I asked for a few weeks ago was at level 62, I was told this was perfect. x
I am trying to get the "courage" to ring the surgery now, stupid that I feel scared to ask for something that I am entitled to know.
My husband has tried to understand for 2 years, and I do understand that its hard for him too because my "illness" has, does and still is having an affect on our entire family.
I saw the Dr last week and told her that my health, total lack of libido etc is causing my marriage to fail, she didn't bat an eyelid.
I am at the point now where I feel desperate and alone, with the only physical symptom obvious to people is the fact I have become fatter, oh and I now have to wear my reading glasses all the time.
Other than that people cant see the burning feet, or feel the tiredness, or the despair.
As soon as I get any results I will post them here, it is comforting to hear that people here do take things seriously.x
Hi Little, I was in your situation not so long ago. It makes me so sad and angry that people are suffering like this. I was 'in range' for years but suffering. I decided to sort myself out as I had lost faith in doctors. The first thing I did was ask for a print off of my bloods since 2008 and highlighted any anomalies or low range results. I then researched each one. Listen to Radio 4 'Inside health' on vitamin d (notes is the best one) I realised that although just in range ( for this country) I was suffering just like the lady who was sharing her experience.
I then realised that my tsh was not always in range but I was not informed. Then they changes the normal levels! 2015 I was tested and my tsh was 4.9 (0.4 - 4.5) I was told I would need to be 10 before treatment. I then read on here that I should go for test pre breakfast and early morning - tsh 8.5. This was still not enough.
I then decided I needed to go private as I was desperate and they were trying to tell me I was depressed, yes by then I was! My doc eventually decided to ring an endo for advice. He told her to treat me, but on 25 mg of Levo - that wS like lighting a match to heat a room! I eventually got to see my private endo who took my family history and symptoms into account and sAid I needed to be on 50 mg for two weeks then 75mg. He predicted I would get to 125. He also said he thought I had Hashimotos even though the blood test said I was 'normal'. He Lso told me I had the beginning of a goitre - that was the first time anyone had even felt my neck! I need to add here that by this time I could not walk far, couldn't think straight Nd had been on the sick for 6 weeks.
I am now on 75 mg and feeling human again! I still have a way to go but there is light at the end of the tunnel. I am afraid that the doctors are not really up to speed on thyroid issues. I cost me £200 for my appointment but was worth it. I got a recommendation from this site for my endo in Newcastle. I wish you luck and hope you will get yourself a file and keep you results and other info in it. It is your health don't let them fob you off. Pretend to be strong even when you aren't and one day you will be! Take care.x
Right I plucked up the courage and rang, the receptionist said that she would print the results out for me to pick up, much easier than yesterday, she didn't seem very happy about it but didn't even question me, will post up for advice when I get them.
Thanks everyone without the prompting from here I wouldn't have even bothered trying.x
Hello Little, your post will be oh so familiar with so many on the forum, me included.
I've been in your position and now luckily am regaining my health back.
I to was told for a couple of years that no way was my thyroid causing all my symptoms.
Eventually i paid private to see my Endocrinologist as the wait on NHS was to long.
I was lucky as my TSH was only just out of range but due to the thorough physical examination, which i doubt i would of had on the NHS. I was diagnosed with subclinical hypothyroidism and started on thyroxine.
My advice is not to give up but keep on battling the buggers.
Go private if all else fails but choose wisely and ask for recommendations off people.
Read, read and read more. Become as knowledgeable as you can but do not give up.
Post your results with the ranges (the figures in brackets) in a new question and members will comment.
VitD 62 is adequate. Optimal is 75-200 and most people are comfortable around 100. Tell us how much vitD3 you are supplementing and we'll let you know whether it is enough.
The GP who told you vitD is a designer drug is a complete pillock.
Right here goes not really sure what they all mean or what is relevant but will post up what i have.
Serum TSH level 1.79 (0.35-4.50)
all other results are to do with bloods and bones a huge list which varies but are within limits even if some are on the upper or lower edge, if that makes sense.
only other ones which were highlighted up was the mean corpusc haemoglobin 32.8 (27-32.0)
and HbA1c level 34 (48-59) these said within acceptable limits
Ferritin is miles too low... So you may be losing hair? The hba1c shows you don't have diabetes. Tsh a bit on the high side but fairly useless without free t4 or free t3,
So the doc is half heartedly testing... A bit....
I would get a set of tests done for £99. A least then you will get a decent overview.
Dont think my Dr will allow me the privalidge of a t3 or t4 test, had to sob to get this test done.
will have to save some money i suppose, which will be hard as money bit tight (as it is with everyone!)
The only issue i then have is do Dr's take any notice of these private tests? because if i pay out and then the Dr says so what it seems fruitless....and yes my Dr would say so what, when i told her i was exhausted all the time she told me well i am tired too.....and then went on to say if i had a pound for everytime someone told me they were tired i would be a millionaire.x
My doc took no notice of my tests, but once I knew what I was short of, I sorted it out myself. I sent several hundred pounds on tests, put them all my credit card and paid them back once I got a life back.
You can start to get yourself better by buying some iron and working on increasing the ferritin levels. I used the one made by blue bonnet, and my mum uses spa tone sachets. No doubt others on here will have better suggestions about which iron supp to take.
Hi am in a similar position, I am new on here and my GP said my burning feet (current worse symptom) is down to menopause and stress! My bloods are "normal" but he is refusing to do further tests. I am going back this morning and asking for further bloods and a referral.
You have every right to get a copy of your blood tests, I am going to ask my GP today for them. I am a nurse so I have some knowledge and will refuse to be fobbed off.
I would go back and ask for a referral to an endocrinologist (hormone specialist). That is my intention today. The burning in my feet is awful and I have been fobbed off with amitriptyline too - no good as I have to function and I am already tired enough.
I went back to my DR yesterday to speak to her and tell her I was not coping with either the pain or the exhaustion, I was also a little worried as I have been having pain in my calf (new pain) and am flying long haul in a few weeks and I also wanted to sort out my pain medication so that I would have enough for the time I was away.
The DR's response was "well its great that nothing was found by the rheumatologist aye"
"why do you need painkillers?"
and the classic "I would only be worried about a pain in your calf if it was a DVT" yes I replied that's why I am reporting it!
I walked out crying, totally forgot to say that the rheumatologist told me I have arthritis in my feet, that he thinks I have a nerve issue in my feet (hence the amitriptyline) and that he thinks that the exhaustion is due to chronic fatigue syndrome, I am at a loss as to where to go for help or how to explain to anyone that the DR'S are basically ignoring my plea's for help, she looked at me yesterday as if I was mad and obviously doesn't read her patients notes.
I have been crying all night over this, because all I want is to feel human again, who can I talk to about what I am going through if not the DR, and what do I do if the DR fobs me off, to be honest I am feeling suicidal not because I am suffering but because I am being treated so badly by the DR.
I hope you manage to get a little further than I have and I wish you the best of luck with the fight you are about to begin, for me I fear the fight is over, I have neither the energy or the right mind to continue to make myself so upset, I will now just continue to struggle with my life.xx
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