I have the Hashimoto disease since 99.. But my Gp refuses to write me a referral for an endo!!?

Hi everybody!

I've just got back from my GP and I am so mad.

Basically I discovered to be hypothyroid in99 and later to have the Hashimoto disease.

Of course I've seen a lot of endo in Italy where I came from...also wasted a lot of money because there we only have the levothyroxine and nothing more. No T3 or, of course, armor...

Well I have to see an endocrinologist sometime cause I need to decide which dosage it's good for me as I've always been on 100-125 but lately I've been having a quick heart rate and I have to change (all by myself), the dosage.

Well this seems a joke... This morning the answer of my Gp has been:" your values are NORMAL, so I can't write you a referral... Your problem is anxiety but... You can't change your dosage by yourself !"..

Yes because always being ill, not being able of losing a kilo even if I exercise like a maniac everyday and Always being on diet since I remember.. Or simply being depressed and with no sexual desire at all (sorry hubby), or having a low ferritine etc etc Well of course I'm just crazy and it can't be that MAYBE I could try to change medication or dosage? No because OF COURSE I am stupid and I'm not able to recognise the symptom from my body which are telling me" something is not working"?

I'm so mad! And the ironic thing was that I asked my Gp to write me a referral to see this endo privately! Not paid from the NHS! Well I don't understand...

14 Replies

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  • I can understand how upset you are and if you have been diagnosed as Hashimotos you obviously have antibodies.

    We instinctively know all is not well. If you can get a copy of your latest thyroid blood test results and post here someone will comment, you must put the ranges as well (figures in brackets).

    This is what Dr Toft ex of the British Thyroid Association said and if you wish to have the whole article which was in Pulse online you should email Louise.Warville@Thyroiduk.org

    2 I often see patients who have an elevated TSH but normal T4. How should I be managing them?

    The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.2

    But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

    In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

    Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

    If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration.

  • Thanks; I think they are really 'normal', anyway a second opinion from an endocrinologist is something I want and I deserve cause I'm not feeling right, that's all.

    Maybe the low platelets are also a reason, I saw an hematologist yesterday and they made me like 50tests to see if something is wrong.

    Let's see these results cause maybe the fact I'm always tired and weak, might be for the platelets..or the thyroid or the low low ferritine..

    I don't know:(( I only know that, after 15 years on levothyroxine, I'd like to explore other options like armor! And I think that with my disease, I should be fight so much to have a visit with an endo!

    Anyway my values this simmer after a period with a lot of soy and 125 everyday:

    TSH 3.06microU/ml [0.34-5.60]

    FT4 0.70 [0.60-1.12]

    FT3 2.7 pg/ml [2.5-3.9]

    The last blood tests after cutting the soy from my diet:

    TSH 1.90 mu/L [0.3-4.2]

    FT4 14.6 pmol/L [9-23]

    FT3 4.3 pmol/L [2.5-5.7]

    What u think? They are noooormal yes.. Anyway in the last 2 weeks even if in diet and even if I exercise 1hours with the heart rate monitor to be sure the activity is cardio, I've gained 3 kilos, unbelievable... My immune system seems to be in holiday, I'm always depressed and with a big lack of energy.. I honestly dipont know what to think anymore:((

  • Nothing normal about a tsh of almost 2. You need more meds. Have a read of the Anthony toft book, understanding thyroid and show it to your doctor. .

    G

  • I read the mary Shomon's book several Times..i think I know something about the thyroid but then if doctors say you're wrong, they Make you feel like you're an hypochondriac or, like she said to me, "with an anxiety problem".. She gave me a pamphlet about that, can you believe my frustration?

    I brought with me some pages from the book, where some doctor say how sometimes you need to take T3 or switch to desiccated thyroid cause not everybody respond to the T4 in the same way..,she interrupted me and she said that she wouldn't change her mind... I always thought that my TSH should be lower but if doctor consider holy and untouchable every result which is "in the range"... Well it's tough!

  • I agree with Galathea above - read the book suggested and show it to your doctor....maybe a different doctor in the practice. The book is written by a Doctor on behalf of the British Medical Association which means your Doctor will take notice. Mary Shomon is not someone your Doctor will associate with as she is American and he possible will not know of her work.

    When you are feeling unwell it is easy to miss the good advice on this forum. Please read Dr Tofts book - it is under 5 pounds.

    It's a difficult journey getting things right.....

  • Your doc will always want to treat you for anxiety over thyroid problems as they get paid more! I would write to the practice manager if there is one, or failing that the local PCT detailing your symptoms and the refusal of your doc to investigate them. Explain you want a referal to a specialist.

  • I did all this too.

  • Thanks!

    I did everything:

    1) I wrote to the manager a long mail explaining everything

    2) I read the book

    3) according to the book I'm far to be 'normal', as you suggested..infact my tsh is far from 0.2 or even far from being under 1and my ft4 is far from being on the top range..

    See what happens and, in the meantime, thanks!!:))

  • Hey, I finally fired my doc, yes and changed my PCP. I also spoke with Site Director and Medical director to complain of mistreatment. It is hard yet I needed to get what I needed.

    Hope things have changed.

    Trust you body too, if you feel going down or if you feel going up.

    Wellness and Peace

  • You can do anything you want - including change your dosage, ditch the NHS, etc. You can choose to self medicate with ndt like many here including me. YOU have the power

    You do not need an endo for good thyroid health. Many priovate GPs will give you a prescription for ndt. If you are in London i can point you in the right direction - let me know

  • Hi, thanks!

    I started by myself to take NDT and it is better now. The only thing is that I can't seem to lose weight quickly, it is a nightmare!

    But body temperature, energy levels etc are better!

    I have spoken with GPS of my centre asking them to prescribe me Ndt and they said they won't as they are not familiars with the medication!!!

    I had to buy online... And it is strange since I told

    Them I was already under that mess since January!

    I asked them

    To Preston's me that privately, paying for them, I didn't ask with the Nhs!

    Yes give me some tips!;)

  • You know how you feel not your gp or stupid blood tests

    post your blood test results and we can better assess the situation

    its perfectly possible to get armour /ndt even if you have to import itvyourself

    just as its possible to take correct vitamins and minerals to correct deficiencies but without results its hard to know what to suggest is best way fwd

  • Yes but I'd like to at least find a way to have private prescription rather than buying online to be honest!!!!:((

  • If you ask your GP to refer you, they are obliged to. I don't understand why your GP is refusing.

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