Help! Cannot cope any longer

Hello all. I will be making a trip to my GP next week one final time and insisting they take me seriously. I have had symptoms of hypothyroid/hashimotos for over 20 years and they have escalated since I gave birth 8 years ago. Yet, as my bloods are in the so-called 'normal' range, I am considered to have no thyroid issues.

I have lost 70% of my hair. My periods have all but stopped. My libido is non-existant. Chronic migraines (3 plus a week). One of my eyes bulges from time-to-time - my eyes look 'odd' in general and appear to have shifted position!

I have terrifying heart palpitations - and beats are completely missed at times or slow down (I can actually feel this happening). I sweat absolute buckets and have an abnormal intolerance to even the 'mildest' of temperatures (which won't be felt as 'mild' to me!). I have bad dizzy spells - the room literally spins. I fell badly yesterday. Shocking circulation. Dry, prematurely aged skin. I could claw my eyes out such is the irritation. I spat up blood yesterday for no obvious reason.

I cannot shift my weight for love nor money. I have never been so exhausted in my entire life - yet I cannot sleep (I wake up about 40 times a night). My memory is shocking. I am suicidal. I could go on and on.

It is clear that from my blood tests that the whole gamut of tests are not conducted as a matter of course.

Could someone kindly inform me what tests I need to insist my GP performs please?

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  • Your can't insist your GP performs anything.

    The tests you should be able to get on the NHS are:

    1. Full blood count - standard test to see if there is anything wrong with your red cells, white cells and platelets

    2. TSH and free T4 - thyroid hormone tests

    3. Vitamin D - many hypothyroid signs and symptoms are actually vitamin D deficiency

    4. Ferritin - many hypothyroid signs and symptoms are actually iron deficiency

    5. Folate - many hypothyroid signs and symptoms are actually due to folate

    6.Vitamin B12 - many hypothyroid signs and symptoms are actually vitamin B12 deficiency

    While doctors don't believe this if you are deficient or merely low in nutrients you can have hypothyroid like signs and symptoms.

  • Hi Bluebug. So why do I keep hearing that T3 testing is crucial, as the above tests do not give a complete indication of thyroid issues? I've had the above tests. They come back 'normal'.

    How do I upload photos of my bloods taken 8 months ago? The link appears to have vanished.

  • You need the actual printed test results and ranges to see where they are. Then you should start a new thread and post them all for advice as "Normal" is an opinion.

    For example a haemoglobin level of 117g/l is "normal" in the range 115-150 but if you actually investigate further any result under 120 means the patient has iron deficiency anaemia. Unfortunately that particular NHS area has a range low than what NICE guidelines and the World Health Organisation say is the lower boundary for adequate haemoglobin levels.

  • You are very unlikely to get a free T3 test done on the NHS especially as your TSH and free T4 are within the range. Even if the GP asks the lab will refuse to do it.

  • The NHS will test T3 if GP writes suspected thyrotixicosis on the form

  • If you want comprehensive testing then you are going to have to pay to get it done privately. Then if the private tests show a severe deficiency only then will your GP be likely to take notice.

  • Write the results out.

    First write them in notepad or another text editor. Then copy and paste them into a post

    Write them in the form test name, result and range in brackets.

    e.g.

    TSH 4.5 (0.5-4.3)

    Free T4 15 (7 - 21)

    Vitamin D 30

    < 25 severe deficiency

    25- 50 insufficiency

    50 - 200 adequate

    200 > toxicity

  • Forgot to say in regards to your eyes - when you are having problems try and get an appointment with a high street optician. Some can give you appointments very quickly like on the day - you may have to pretend you want glasses. Other health professionals can refer you on - in the case of opticians to eye hospitals - as well as just write a letter to your GP saying there is something wrong with you.

  • Thanks Bluebug. I've made another post and uploaded my last bloods. However, these were taken 8 months ago and my symptoms have deteriorated considerably since then. Do you have any idea how much a private test would cost (approx.). I live in the North West.

  • thyroiduk.org.uk/tuk/testin...

    Both Blue Horizon and Medichecks have offers that reduce the cost of their tests. Medichecks normally has thyroid offers on a Thursday. Either way sign up on their websites so you can be notified of them by email.

    Depending how many tests you have done you can either do a finger prick test, have to get the blood collected at a local hospital or go to a private hospital. The latter two options cost more.

    In your case the minimum testing you want done is:

    TSH

    Free T4

    Free T3

    thyroid antibodies

    vitamin D

    ferritin

    folate

    vitamin B12

    They are approximately £100

    You want the tests done first thing in the morning after fasting all night with nothing to eat until after you had the test. You can and should drink water.

    Once you have those tests done post the results and ranges in a new thread for advice.

  • Thanks Bluebug, this is hugely helpful. £100 is worth it to get my health back.

  • Sunday 11th June......Medichecks are doing a special 20% off till midnight tonight. In the offer code section type in INSIDEOUT6, then hit on "apply code". I have just ordered my next set and one for my daughter who I am convinced has Hashimotos.....all the usual symptoms plus she has psoriasis and coeliac disease, both AI diseases.

  • You are a poor soul right enough. Suffering all those years and undiagnosed due to the emphasis on the TSH alone (I should think). Tick off the clinical symptoms on the link below.

    thyroiduk.org.uk/tuk/about_...

    Most of us on this forum have been forced to do a 'Do It Ourselves' treatment and have recovered.

    It would seem that doctors are so poorly trained in these 'modern times' and are completely unaware of any clinical symptoms which are disabling but doctors are not empathetic in any way but will prescribe a myriad of prescriptions for the symptoms instead of thyroid hormones.

    First make a new appointment, the very earliest possible, fasting (you can drink water).

    It drives me mad this 'normal' they spout when the patient's life is horrendous with a myriad of symptoms. Period problems are rife plus hypothyroidism/hashimoto's can reek havod in our whole body from head to toe. The patient is anything but normal. Pregnancy can also be problematic.

    Ask GP for TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. Get a print-out of the results with the ranges and post on a new question for comments.

    I shall also give you a link and it is an archived site of a doctor who was an Adviser to Thyroiduk.org.uk before his untimely death. He and many other doctors were horrofied about how patients are now diagnosed and another Dr - Dr Skinner said that the situation was Parlous for patients and pleaded for a meeting with all Endocrinologists (he was a virologist) and one by one they refused. Dr S being a virologist was being sent people who had 'mysterious illnesses' but he found that they all had symptoms of hypo and thus treated them and he saved their lives (the patients' words). He died through a heart attack due no doubt being hauled before the GMC to answer why he treated patients but not the blood tests.

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

    Some of the topics within may not be accessed as it is archived but you will find lots of information.

    If GP wont do the tests requested you can get the through a recommended labs. Your GP should certainly do TSH, T4, T3 and antibodies and the vitamins/minerals.

    Post your results with ranges on a new question for comments.

    The only way is forward when you realise that Doctor doesn't know best with regard to hypothyroidism or hashimotos.

  • Thank you Shaws. I have posted my results on a new thread - "Normal?? Test results page 2 of 2". Please note these bloods were taken 8 months ago and my symptoms have deteriorated tremendously since then.

  • That's good. Make an appointment to get new ones done a.s.a.p. You are definitely entitled to them.

  • Thanks so much. I'm hugely grateful for all advice. I'm only 40 but am ready to meet my maker, such is the devastation these symptoms have caused my life. This is not an option, however, as I have an 8 year old girl. I will insist that my GP takes me seriously.

  • I am not too good with blood tests but others are.

    You feel relieved that you are able to talk to people who knows exactly how it feels not to be taken seriously by doctors.

  • Please also tell your GP that you are bringing up blood. This is really concerning and your GP needs to intervene ASAP. All the best and please keep us informed.

  • Thank you Serendipitious

  • I've just seen about spitting blood. You have to tell your GP or go to A&E to be checked out today.

  • this was me.. similar symptoms.. sounds like you have adrenal fatigue.. the Gp's won't accept it exists.. Private Adrenal hormone test or make an appointment to see Dr.Peatfield in Crawley ..

    In 4 months I'm 90 % better due to integrated health supplements .. GPs been laughing at me for over 10 years...

  • I am interested in you mentioning Dr Peatfield. I saw a Dr Peatfield many years ago and he treated my thyroid problem very successfully. But when the GP heard that I had been seeing him they were very anxious!I am just wondering if it is the same Dr Peatfield. They seem to be threatened by his treating us in a rather different manner to the perceived wisdom. Would be interested in knowing how you are getting on with his treatment, if it is the same man! Ann Simpson

  • ill pm you

  • Dear Jane, feel very much for your description of health feelings. Im familiar w/some ( Hashi girl myself) - I had a thought..despite being young, you could be perimenopausal. Ask for female sex hormones & see where you stand. I went thru early menopause at 44 ( 49 presently) it was PURE HELL. At the same time my thyroid became attacked TPO 886.8! In the meantime of getting lab results , have more vit C preferably in food. Some sweet potato peice or red pepper slices at evening time help give the adrenals a dose of C for nighttime restoring. HUGS💐

  • I think you need your B12 level testing.

  • Have you also asked about whether you are perimenopausal? Some of your symptoms could be hormonal. It's so difficult to get to the bottom of issues and know what is what. I have Hashimotos but the majority of the time my tsh is in 'normal' range, so I don't have medication. I have fibromyalgia, which gives many symptoms like fatigue and brain fog amongst many other things. Worth looking up as surprising! Also had lots of gynae issue. I too seem to sensitive to everything and even with hrt see to struggle with any heat. My advice would be to go to the gp with a clear list of your symptoms. Maybe diarize a week of them..... That may pre empt this. Also ask for an ECG. This can count out any heart issues. I have found that if you present them with clear data they are more likely to be receptive. .... I'm 44 and have had several years of crappy health, so feel your pain. . See how your appointment goes and try and be practical and assertive. Fingers crossed for you.

  • So sorry for you ..please don't give up...!!.....if I was you I would order private blood tests and then after taking advice on here rgds the results self medicate like many of us do....!I am 50 yrs old and had 2 children 30 yr ago but then after I had another child at age 39 I began a living nightmare!.. i became perimenopausel early forties but am now post menopause. .this combination of hypothroidism /hashimotos and menopause was torture!If you have been this ill and not been treated for this long you will for sure have adrenal fatigue and the general idea is to treat these before treating thyroid! Regards coughing up blood...that seems like a separate issue..please you must adress this at once...and please don't give up...the support is here and you will get better for sure once on the right treatment and that includes both physically and mentally .

  • With your symptoms especially the eyes I would be thinking hyper not hypo. But whatever is going on, this is what I would do. Go to your doctors and ask for a private referral to an endocrinologist. It may cost you £120 - 150 approx but you'll be seen quickly and I would imagine any endocrinologist who was presented with bulging eyes would take you seriously. Any subsequent treatment would be on the NHS. At least if you pay that initial charge you'll be seen within a few days and with any luck get the treatment you need.

  • hi,firstly do not give up on life.you are clearly very ill and it was sounds like you have at least 2 serious things going on.The fact that medics haven't yet sorted it is their own deficiency.believe in yourself and what your body is trying to tell you.firstly the coughing up blood IS AN URGENT Problem.go to casualty today please.there could be a life threatening cause.you also need to see an endocrinologist urgently.some of your symptoms sound like they could be due to pituitary problems and that would also give you thyroid problems.your eye symptoms and appearance and headaches and loss of periods could all be due to pituitary problems.So the suggestion to get to a private endocrinologist urgently is very sound.in UK that's usually through a gp.i would see your own gp urgently and write a short letter requesting urgent referral from your gp to sort endocrinology.put on the letter you have copied it for file(photo it on your mobile).if you can copy it to practice manager.its hard for them to ignore if you put it in writing.if you cant see an endo urgently ask for urgent private neurological opinion.headaches and eye signs would be in their remit too.the suggestion above about a high street optician is also very sound.if you cant get answer at local casualty to your coughing up blood then take a 'short holiday',get in a train and try wales or southern Scotland.dont take no for an answer.sadly you have to rattle the cage a lot to get medical care at times.never never never give up.take care and believe in yourself.

  • I meant see the urgently but hand them a letter too.its harder to ignore things a patient puts in writing.good luck.

  • Hello Jane, Feel so bad for you, I've been there, and I promise it will get better. I've noticed most of the posts here are for folks with Hashimoto's, you have all the classic symptoms of Graves disease, especially the eye problems. I also have Graves disease, and have had my thyroid ablated with RAI. You must see an endocranologist, not a GP, Graves is easy to diagnose, they will run an iodine uptake test to confirm. My eyes also bulge, but are better now since the ablation. Please hang in there, and let us know how you are doing.

  • Hi all. I've been really bad over the past week or so and still haven't gone to my GP. To be honest, the thought of yet again being dismissed would tip me over the edge (mentally and emotionally) so its for the best that I haven't enquired (at the moment).

    In the meantime, I have purchased the following: medichecks.com/thyroid-func...

    I presume this is the most comprehensive thyroid test I could purchase and what I need to get my GP to listen (dependant on results). I will arrange a private blood test and am eagerly awaiting its arrival.

    I purchased it at the reduced fee of £135+ so I've been struggling to get by as that is a huge sum of money for a single parent. Regardless, it's a no brainer. It is absolutely imperative that my health gets better as this is destroying every single aspect of my life.

    Is there an optimum time for my bloods to be done? Shall I ask for more than one sample to be taken? Is there anything specific I should do beforehand to ensure I get the most out of the test?

    I'm presuming the test will arrive with full instructions but would still appreciate any advice from others who have also purchased a private test. Thank you.

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