Worried mum

I have just joined thyroid Uk as I am extremely worried about my 24 year old daughter.She was diagnosed with Hashimoto's disease approx 18 months ago after 3 years of being told, by various doctors, she had anxiety/depression.She is on 25mg levothyroxin twice a week and 50 the rest of the week and has also been having B12 injections. The problem is she still feels extremely unwell ( brain fog, dizziness, feeling cold, extreme tiredness etc). She is trying to do a college course (she had to leave university before her diagnosis) but although she is doing well she finds it hard to go in when she's feeling unwell.My problem is that no one seems to be treating her symptoms.The blood tests seem to be normal,so the endocrinologist has discharged her back to her GP ,who I doubt is an expert, and has basically been told to get on with her life. Why is no one taking into account that she feels dreadful on a day to day basis? I would be very grateful for some advice on what we should do next as ,as her mother, I feel I should be doing something for her but I just don't know what to do.I feel like her life is on hold until someone can make her feel better!! Please help!!

16 Replies

oldestnewest
  • As a first step you daughter needs to get hold of a copy of her blood test results, since when she was diagnosed would be helpful.  She is legally entitled to these, details here:

    nhs.uk/chq/Pages/2635.aspx?...

    Have a read here:

    thyroiduk.org.uk/tuk/index....

    When the results are to hand include them in a new post.

    Many of us have not had any help whatsoever from the NHS and we've discovered that being told blood test results are 'normal' is meaningless.  What did the endo say?

  • Hi thanks for replying-I have just replied to another post with all her blood test results but think I should have put them in a new post!The endo was most unhelpful to the point of rudeness and just discharged her back to her GP as her blood test results were 'normal'!!

  • You have come to the right place :-)  First of all you need to obtain the latest blood test results with ranges - post them here in a new post if they are not to hand.  People will comment.  In a way it is good to have a diagnosis at a young age - many of us are many years older  -  I was 59 :-(  So there is plenty of time to correct things.

    We read on a daily basis how little Docs seem to understand.  Going gluten free can help reduce the anti-bodies and generally heal the gut.  Gut inflammation can affect so many parts of the body and be involved in many illnesses.

    Do you have results for Ferritin - Folate - Iron - VitD ?  All need to be optimal and not just in range.  How much B12 is your daughter taking and which type ?  She will also need a GOOD B complex to keep all the B's in balance and preferably one with methylfolate rather than Folic Acid.

    There are many good books and websites for Hashimotos - so I won't overwhelm you with too much information.  To the right of this post you can see under the heading Topics - Hashimotos - over 1800 posts !  So lots of reading there ...

    Always obtain copies of all all test results with ranges - your legal entitlement.  Never accept Normal either - that is an opinion and not a result.  Docs mean in range when they say normal - but WHERE the result is in the range is the key to wellness.

    Hope you soon find some answers ......

    Tests need to be for TSH - FT4 and FT3 - as I am suspecting her FT3 will be very low.  Also her dose is too small and should by now be at a more realistic level.  It sounds as if she is still on a starter dose ....

  • Wow-thanks for these,I didn't expect to get replies so quickly.Her last blood tests were at the end of March and they were as follows:

    TSH-2.56mlU/L (0.34-5.6)

    T4-12.10pmol/L (7.5-21.1) these were the only thyroid tests done

    Serum ferritin level-28ug/L (11.0-336.0)

    Serum folate level-7.3ug/L (3.1-19.9)

    Vitamin D level31 nmol

                             25-50 nmol/L which was deemed insufficient but I'm not sure she was advised to take a supplement.

    B12 was 174ng/L (180.0-914.0) which was below range but she did have to push to be treated for this.

    Any advice would be appreciated-as the doctors say they are within range but why does she still feel so ill??

  • When we are being treated the TSH should reduce downwards - to around 1 is best for many people - sometimes less. Your daughters level indicates she needs to be on a higher dose of T4. The FT4 is so low in range and needs to be nearer the TOP of the range. Ferritin needs to be around 80/90 - folate also should be higher and her VitD is on the floor. Poor dear she must be feeling awful. The B12 too is so very low.

    As I mentioned in my earlier post to you - being in range is one thing - but it is WHERE you are in the range that is key. GP's do not have this knowledge in order to refine thyroid treatment.

    Action Plan : :-)

    Increase T4. Treatment for Low Ferritin with a good gentle iron supplement plus VitC to aid absorption. Type Iron into the Search Thyroid UK at the top of the page for advice on Iron - I am not good at that :-(

    5000IU's VitD taken daily with VitK2 to ensure calcium is directed to the bones.

    B12 is seriously LOW and I would be asking for more testing - for PA - Pernicious Anemia.... or needs to know why she is so low. Vegetarian ? Your daughter needs loading injections in my non-medical opinion. Anything under 500 can present with neurological symptoms if left undiagnosed and untreated. What the GP does not know about B12 can harm you. What is she taking ? You need a GOOD B Complex when taking B12 to keep all the B's in balance.

    Being Gluten Free can help to reduce the anti-bodies.

    The T4 will not work well - ie convert into the Active T3 when the Ferritin - B12 - VitD - Folate are so low. So it is going to take time.

    grassrootshealth.net

    b12deficiency.info/signs-an...

    The above link is so informative on B12 and will detail the extra testing needed and all sorts of excellent advice.

    Hope this helps ..... I could go on but do not want to muddy the waters with too much information. I just feel your daughter has been poorly treated. Thank goodness you are there to fight her corner - do not give up :-)

  • Thank you so much for this and sorry I haven't replied earlier I've been so busy just talking to her and trying to sort things out.She went to the doctor again today as she was feeling so bad but only saw a locum who said that her blood tests were normal but at least she has a blood test next week.She hasn't been to college for 3 days as she feels so bad and my husband doesn't understand and seems to think she's making it all up and just shouts at her, but she really isn't that type of person. How can I get the doctor to listen??

  • There is nothing normal about your daughters results. Normal is an opinion and NOT a result. I do not know how you can get your Doc to listen. It seems a regular topic on this forum. The link below will take you to the B12 site and there you will find a Draft letter you can write to the GP. Then also add the other things I have mentioned. Sorting her B12 could help a great deal as it needs to be around 1000.

    b12deficiency.info/b12-writ...

  • TSH too high - 1 or below is best and some need it to be suppressed.

    T4 should be towards the upper level. Not the lowest!! T4 is supposed to convert to T3 as T3 is the active hormone required in all of our receptor cells (billions) and the brain contains the most. We cannot function with low T3 it is the 'energy' for our bodies. T4 is inactive and it's job is to convert but sometimes doesn't efficiently.

    B12 was woefully low and it is now recommended to be about 1,000 to prevent neurological problems etc.

    Others will respond about the other test. No doubt about it, she will have to resort to self-help. Most find the benefit of adding T3 to T4 (She must feel so unwell with a miserly dose of T4. Do the doctors not realise the are opening doors to much more serious conditions.

    Also available is Natural Dessicated Thyroid Hormones which contain all of the hormones our healthy thyroid gland would have produced. I shall also give you some lines for you and daughter to read. We can get well despite the 'guidelines' and doctors who are unknowledgeable, uncaring, unsympathetic and the patient is left out on a limb.

  • Completely agree with all of that.

    Why on earth is her doctor keeping her on such a low dose of levo? Honestly, she's on a tiny dose. Makes no sense at all!

  • Thank you so much for this-I have had so many positive replies. Being on this forum has made me realise just how many other people there are out there who are being fobbed off!!

  • They might find out later on that they have developed other serous illnesses.

  • Oh, I am sorry you are worried and I would be as well if my daughter or son was unwell and seemed to be left 'to get on with it'.  Unfortunately, that seems to be the way of the Endocrinology worldwide. They only take notice of the blood tests and if they are in the 'normal' range the 'job is done'.

    50mcg of levothyroxine is a starting dose. No wonder your daughter is suffering.

    We have to read and learn and I'll give you some links which will be helpful.

    The majority of members on this forum, are on it due to the treatment similar to your daughters or undiagnosed/undermedicated, etc. etc..

    The blood test should be the earliest possible time and don't eat before it. Also leave about 24 hours between your dose of levo and the test and take it afterwards. You can drink water. This allows the TSH to be at its highest level and may prevent the doctor adjusting your dose to keep the TSH 'in range'. Some think below 1 causes problems. 

    This is a good link but arcived now. There are other topics are at the top of the page but links within may not work as Dr Lowe died of an accident. He was an Adviser to Thyroiduk.org.uk and is a great loss to humanity.

  • Thank you, she has a blood test next week so I will take your advice!

  • Missed out the link:-

    web.archive.org/web/2010103...

  • Don't forget thyroxine works for the vast majority of people but if she doesn't improve she may have to explore T3/ T4 or just T3. Good luck. I'm afraid it's a long haul.

  • Hi,

    Dose of Levo definitely too low.

    I would recommend seeing a more understanding endocrinologist. I saw one this week in the SW who was great. Where are you?

    He told me that the brain fog was due to vitamin D deficiency. B12 deficiency can also cause this. I also got a private script for T3 as sadly this is not available on the NHS. You can get private bloods done via bluehorizon. Thyroid plus T is good and very comprehensive. You are then armed with proper results to take to the GP or a new endo.

    The book The Thyroid diet by Mary Shomon is very good too as certain foods can make us much worse.

    You have found the right place, there are lots of clever people on here and it is s great support.

    Kate.

You may also like...