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Struggling with getting a diagnoses for hypothyroidism

Posted , 7 users are following.

katie21569
katie21569

Hi

I have been experiencing the following symptoms

Heavy and prolonged periods

Unable to loose weight

Extreme tiredness

Cold extremities

Loosing hair

Migraines

Brittle nails

I have been going to my Drs for 18 months and hypothyroidism has never been mentioned. However after feeling particular run down last week end I decided to get a private blood test.

My TSH levels came back at 4.22, and I was advised to see my gp to look at starting a low dose treatment. I went to see them yesterday and they said my level wasn't high enough for treatment but they would repeat the blood test. That result has come back today at 3.86, and the go has said they will not treat. Can anyone offer any advice? Thank you

0 likes, 21 replies

21 Replies

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  • yorkrose
    yorkrose katie21569

    Posted

    Hi Katie, the same thing happened to me I was told by my GP that the NHS will not medicate for thyroid unless your levels are at 10.00 mine were much lower like yours are, I asked for a therapeutic dose as I was so tired, I lost lots of my hair and was bald in places.

    The GP I saw gave me a dose of 25mg which I think is the lowest dose available,I fealt better almost straight away, however 4 months later I am back to feeling so so tired again.

    I am seeing GP next week and hoping they will give me a higher dose.

    The thing is the NHS say they wont medicate unless your level is 10 ( dont really understand that bit), but they didnt know and nobody knows what the right level was for your body bfore you got thyroidism. So they use a guideline level instead of listening to us who obviously know our own body and needs.

    Ask for a therapeutic dose next time you see GP.

    Hope this helps xxx

  • wendolph
    wendolph katie21569

    Posted

    Try looking down other avenues, have you had your vitamin levels checked?
  • lynbolton
    lynbolton katie21569

    Posted

    Completely feel your pain on this one, my tests keep coming back as normal so trying to convince the docs otherwise is an ongoing battle, once again  I was sent away with anti depressants a few days ago despite insisting im not depressed im just tired and fed up of feeling tired and fed up!  Good luck Katie 
  • Scazzoh
    Scazzoh katie21569

    Posted

    Hi Katie, your GP is wrong in saying that the NSH will not medicate unless your levels are under 10. Laboratory ranges are usually between .4 and 4. The '10' figure is a NICE guideline which is open to interpretation, although doctors don't seem to realize this. Unfortunately doctors are not savvy in the treatment of thyroid disorders because it is quite complicated. Keep a record of your symptoms and read up on the subject. Ask to see the copies of the results of your blood tests, which will include the ranges and your result. Unfortunately, Levothyroixie is usually prescribed according to lab ranges rather than how you actually feel. If this doctor won't help you, find one who will. 
  • Gizmo1963
    Gizmo1963 katie21569

    Posted

    I'm wondering if you have peri menopause as symptom can also match and is also hormonal. I had peri menopausal symptoms from my early 30's and my hypothyroid did not get diagnosed until 3 months ago until it was over 8.00 but was creeping up slowly over a 6 month period. It's not a good illness to be diagnosed with as you need to be treated for life. Scary!
  • michelle95405
    michelle95405 katie21569

    Posted

    I was diagnosed with chronic fatigue 18 years ago and my levels were borderline then. I became hypo due to lithium and have moved from 25mg to 200 mg as I cant keep the symptoms at bay. The cognitive difficuolties,stiffness,swelling etc ect are a nightmare.My gp has admitted defeat and im seeing a private endo guy on tues. You have to keep badgering im afraid.
    • lynbolton
      lynbolton michelle95405

      Posted

      Hi Michelle, was wondering how you managed to get from your CFS diagnosis to present day,  how did you convince the doc to give you treatment?? Just interested as my docs look at me like I'm a timewaster most of the time.  It's only now afters all these years suffering with the CFS that an incidental finding of a brain Anuerysm has led to people now taking me more seriously... It's so frustrating when your suffering a visually invisible medical problem and no one seemingly believes a word you say!!  Would be great if you could tell me more....ive never met anyone who suffers with CFS and as you will probably know, it wears thin as a conversation with friends and family after a while.  Thanks Lyn
    • michelle95405
      michelle95405 lynbolton

      Posted

      Hi

      I have bipolar too which has only been recently diagnosed and that was a struggle too. With the CFS I have just plowed through really.At time my son was being diagnosed with autism so it felt as though any issue I had was fobbed off as depression. Yes it was a crap time but all the issues I had didnt explain it all. At that time I ran 30 mile a week and then  I started gaining weight and had muscle aches and stiffness so had to give up.At that point they did bloods and said I was borderline Hypo but left it. With me having BP also the symptoms are similar to hypo so a lot of stuff has been muddled up.

    • michelle95405
      michelle95405

      Posted

      private endo consultaion here in Leeds is between £100-£300
  • lynbolton
    lynbolton katie21569

    Posted

    I agree with Michelle, I too was diagnosed (after a long battle with the docs) with chronic fatigue syndrome six years ago, ive been badgering away at them now for years to let me see an Endo but as half of them don't believe in CFS a it's like banging your head on a brick wall. You know your own body.  An endocrinologist is the best person for the job on this stuff, keep pestering the doc till they give in!! It's tragic when you pay your taxes you have to fight with these people to get them to refer you.  I hope you can find a sympathetic doc who will do so and feel better soon 
  • Gizmo1963
    Gizmo1963 katie21569

    Posted

    Katie, Michelle and Lyn wow I really do understand how difficult getting diagnoses are unless you have private medical insurance which I had through my previous job. I was first diagnosed with Degenerative disc disease both neck and lower back, then osteoarthritis. Next came high blood pressure and cholesterol followed by my body crashing after I'd suffere severe campylobacter food poisoning and c diff caught in hospital. Later diagnosed with cfs, fibromyalgia and hypothyroidism. Maybe some of these conditions can be linked because all I ever get told now is that my case is 'complicated'. I hope you all succeed in being correctly diagnosed x
  • shellyC19
    shellyC19 katie21569

    Posted

    Hello Katie:  I am an RN and live in the USA.  I had the same symptoms back when I was younger in my mid 20's.  All of your symptoms are part of having a low thyroid horomone in your blood.  The medical name is Hypthyroidism. 

    It can be treated by replacement horomones. Your doctor should prescribe one for you. It tends to hit women and run in families. You may want to ask your  female relatives if they had any thyroid problems.  It tends to come out after puberty/ or pregnancy, stress to the gland like Epstein-Barr virus (Mono), and aging.

    The thyroid is a very important gland and regulates your periods, metabolism, hair growth, body temp.  If it goes low you can see, weight gain, loss of hair, missed or crazy heavy periods, muscle aches and pain, tired -despite rest.

    Log your symptoms and tell GP all what you said to us here on this website.  you are not alone! We can all help you because we have it also. 

    Your TSH level alone is one indicator, but you do need a T3 & T4 blood level. In Uk I am told you may need a referal to an Endocrinologist.  that is a doctor who just knows glands and is a specialist. Sometimes it will appear normal but the 2 separate tests of T3 & T4 one could be lower and your doctor would not know from just the TSH level alone.  Also in the early stages your body may go from Hypo to Hyper as it tries to make more horomone to meet the demand in your body.

    Vit D levels go low in thyroid patients and some minerals in the body go low. A mineral panel (blood work) is Vit K, Magnesium, potassium, sodium, etc... Vit D is a special blood test but should be drawn. 

    Ask the doctor to refer you, if you can.  It is so important to see an Endocrinologist.  I hope this helps. Let us know how you are doing and if you start on meds.

  • Scazzoh
    Scazzoh katie21569

    Posted

    Without wanting to be overly negative, relying on Endocrinologists for  a diagnosis will not necessarily be the answer. I went to see an NHS endo recently who informed me that T3 converts to T4. When I suggested that it was the other way round, she told me that 'it's very complicated, isn't it?' O dear.  
    • michelle95405
      michelle95405 Scazzoh

      Posted

      Dont know what you d say but NHS treatment can sometimes be amazing but likewise appalling...like sheep being herded. Im hoping by going private which I know has ethical considerations for us brits with an NHS , that il get some answers and have a bit more respect for what im saying and not just brushed off
    • shellyC19
      shellyC19 Scazzoh

      Posted

      Scazzoh,  LOL, T4 goes to T3 - I know I once got  a new Endo and also a lady doctor who tried to put me on Synthroid again after I told her I can't convert T4 to T3.  I live in the USA, and I dumped her and stayed with my GP who knows more than she did. 

      Some GP's are good and know more than an Endo.  I got a laugh out of your comment.  Thanks, Shelly

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