Not sure where to start

Was diagnosed with underactive thyroid 3 years ago had a lovely doctor lived in a lovely place went on Levo and it seemed to do the trick was going to the gym felt good.Then my husband got posted we moved to a not very nice place,my doctors are sick more than the patients so you never see the same one.My son could not get into the school nearest to us and then my husband went to Afghanistan and that's when the problems started.Anxiety which has become a vicious circle no matter how hard I try to relax I have a constant knot in my stomach.

Doctor checked my Tsh it was 4.73 so agreed to a higher dose my ft4 was 14.6 so increased my dose my Tsh came down to 0.012 my Ft4 was still only 14.7.

I have been taking b12 as it was 298 now apparently it's too high doctors wouldn't say what it was but I have a retest tomorrow along with liver function.

I have no idea where to start with trying to heal myself it's one step forward 2 back.

People say about cortisol levels,Vit D,Vit B,supplements etc my doctors are worse than useless I can't even change doctors as the doctors work on a boundary basis so I can only attend the one I'm at or one other who I've heard is equally rubbish.

I know I'm becoming health anxious as well as I'm currently looking things up convincing myself I've got god knows what.

Where do you all start on this long road to recovery should I start with vitamin tests?

Thank you Vanessa x

9 Replies

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  • I am relatively new to living with these problems but there are those on here with lots of experience. I know that they will ask you to give your blood results and also the ranges (as different labs and regions may vary). That will help people help you with the best advice.

    I guess somehow you have to get your doctor to order a complete set of tests including all the vitamin levels. Maybe when you get these you can post them.

    Anxiety is dreadful and I take separate medication for that - I started being treated for anxiety long before the thyroid became an issue and I barely dare suggest that I now stop the medication as living with anxiety is torture. I am no so 'un-anxious' (particularly about the state of the house) - but refuse to go back to the old me and that dreadful feeling.

    One way or another you are going to get through this and I would start with a good long list of questions for the doctor and don't leave until you have them all ticked.

    Please try to look towards what WILL BE a brighter future and remember with this site you are not alone with any of it.

    xx

  • Thank you for your reply you say you feel better on the medication for anxiety I am thinking his might be the route I have to go down.I'm a wreck I keep forgetting things,biting people's heads off because I feel so weird all the time I know it's anxiety as I only have to read or watch something and he feelings art to creep in.Wish I'd had more sympathy for my mum now I've always thought it was people of a nervous disposition suffered with.I never considered myself to be he type then you realise it can happen to anyone.I'm glad you have yours under control.I hope you are feeling well at the moment xx

  • Hello Vanessa

    At least you have now made a start in trying to get your health back by coming onto this site and I hope we can be of help.

    There are many symptoms to hypothyroidism and anxiety is one of them.

    If you have been taking B12 supplements that's good (is it methylcobalamin) and usually you cannot overdose on this as surplus is excreted. It is far better to have a higher B12 than a low one.

    After your blood test results, get a print-out from your surgery complete with the ranges (figures in brackets as labs differ) and someone will comment. As well as the usual TSH, T4,T3 ask for a free T3 test (lab may not do it), Vit D (many are deficient), iron, ferritin, folate.

  • Shaws you have been a great help over the past few months and I just hope eventually I can learn enough to be able to help others.

    My doc tested my t3 I was in the lower end of the range.

    What is the difference between ferritin and iron I thought they were he same thing :-0

    Doctor won't test vit D so I'll have to get them done privately x

  • Is the GP trying to save money re Vit D? I just wonder if you are not converting T4 to enough T3. Some people are poor converters. Would your GP not give you some T3 for a reduced T4? My Endo gave me some T3 and it did make an enormous difference. This is an excerpt of Dr Toft's (ex President of the BTA)

    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.

    This is re ferritin and iron

    labtestsonline.org/understa...

  • Re your supposed too-high B12 level:

    "There is absolutely no evidence that a person can have too much B12 in his/her blood. Any excess is simply exgreted in the patient's urine. This is because B12 is water soluble and so is completely harmless. Vitamin B12 can only do good"

    So said Martyn Hooper, Chairman of the Pernicious Anaemia Society, in his book "Pernicious Anaemia: the forgotten illness" Page 142

    Are your doctors unable to connect your (good) levels of B12 with the fact that as an informed patient you have been supplementing B12, therefore your formerly low level has risen and as shaws says, you will be excreting any surplus?

  • Hi I think the most important thing to do is have a Free T3 test, it sounds as if you need T3 on a script. It lowers your TSH + weight, if needed and often makes all the difference to how you feel.I need my FT3 near the top of the range. If the GP will not or cannot test, Labs here cannot ,then can you pay for one? I pay £61 through the site and use Blue Horizon quote TUK 10 for a discount thyroid.uk.org.uk/tuk/te . They are very good, results to you so you can show a doc. if you choose to. Vit D is essential as hormonal, GP should test for it or you can get the NHS test for £25 through the site. at City hospital ( Blue Horizon better but dearer) Get the doctor to do Ferritin too, they should do that OK although may only do it in a FBC not the specific test. ,or just take Spaton from Amazon, huge range so should be safe. if D low you need calcium before taking any vit D ( GP). Then try and have the other useful tests, B12 Folic acid and diabetes, Glucose and Hb1Ac.

    I hope then things will improve all round for you. I am sorry to hear you are having such a bad time and I am sure when you feel better everything will look different..

    Best wishes,

    Jackie

    Not sure if you know b but to reply to someone you need to click "reply to this"

  • I am new to this site too and learning more daily - thank you. Just wondered what Hb1AC blood test is?

  • Hi There are two diabetes tests, hormonal and auto immune , so you do not have to have the common symptoms as I found! There are 2 separate blood tests there is the Glucose one but very good to have the 2 ie one above also. They give a different picture. If your GP will not test. , they should. A good pharmacy will do a free finger rick test called a BM. as a rough guide .If so make sure only water for at least 2+ hour before. They will advise you but without food normal is 6 or below.

    Jackie

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