Prolactin abnormally high, thyroid up and down, been referred to Encrinologist but no appointments available

Prolactin from pitruity gland abnormally high, estrogen confusing, thyroid up and down. Feel tired, ache, headache, excess weight gain.

Doctor referred me to 2 local hospitals been told no appointments available at nearest the other has 1 appointment at end of Sept, dont know what to do, should I ring doctors to see if can go to another hospital and travel. How much would the cost be private? Really wanting to try T3 as the Thyroxine doesnt seem to be doing anything. Cant imagine not getting this sorted until the end of the year!!

7 Replies

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  • If you put your latest blood test results with the ranges on here other more experienced members will be able to advise what your levels are saying. I looked into going private for an endocrinologist appointment - they said it was £300 for the initial consultation. I didn't have that. If you pay for health care it may be covered so worth asking them. I didn't have a good experience with my endo (she knew nothing) so I am starting to self medicate with the help of the people on this site. I'm sure someone will comment and help of you put your results up. It's difficult to know what's going on without them and the ranges. :-)

  • MissT,

    You haven't been medicating Levothyroxine long. The goal of thyroid hormone replacement is to restore the patient to euthyroid status which usually means a TSH of around 1.0, which can take many months depending on how long you were previously left undiagnosed.

    What dose of levo are you medicating and do you have recent thyroid hormone blood test results to post complete with ranges (numbers in brackets) for members to comment ? ? .

    Elevated oestrogen can stop Levothyroxine from working by creating too much SHBG that carries oestrogen in the blood stream but binds with thyroid hormone (so not allowing it to work) when in excess. Advice on prolactin given in previous post.

    You can choose whichever hospital//endo you would like to consult with through the "choose & book" scheme. Discuss with your GP, or you can email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos//doctors that members have had positive experiences with. Most private endo consultations start from about £200.00 plus. Ensure to have all blood tests (& other) conducted at//through your GP on National Health as private (blood) testing through an endo is very expensive.

    .

    Adrenal, thyroid & Sex Hormones.

    hypothyroidmom.com/a-balanc...

  • Have you had Vit D, b12, folate and ferritin levels checked as recommended on previous posts? If GP won't do agree to do this you can get done privately (like many of us have had to do)

    thyroiduk.org.uk/tuk/testin...

    Blue horizon plus eleven test will check all these. Finger prick test, easy to do at home, post back and they email you results couple of days later. Then you can put results on here and members can advise which vitamins need supplementing and at what level.

    They all need to be at very good levels (not just average) for thyroid hormones to work well.

    You say you have been diagnosed with autoimmune Hashimoto's - do you have antibody results?

    have you tried adopting 100% gluten free diet - many of us find that this can really help reduce symptoms. There are lots of gluten free options available these days - good choice of bread, biscuits, even pasta, beers etc etc Even eating out is pretty easy.

  • Hi if your prolactin levels are up it suggests there is something up with the pituitary. You need a good endo with that sort of experience . I suggest you contact the pituitary foundation pituitary.org.uk. The forum isn't brilliant but they have lots of online info and a very experience nurse helpline who can hopefully guide you in the right direction.

    Rachel

  • Dear MissT21,

    Increased prolactin level is one of the symptoms of hypothyroidism. Hence the most likely explanation for your high level of prolactin is that you are not optimally medicated with regards to your thyroid meds. Stress and lack of sleep can also lead to high prolactin levels. In very rare cases pituary gland tumour can lad to excess production of prolactin BUT this is far less likely scenario given your hypothyroidism. Pituitary gland tumours are usually benign anyway. Endo will probably do prolactin suppression test, just to be on the safe side.

    Unfortunately the lack of thyroid hormones affects the levels of other hormones so it's important to stabilise you on your thyroid meds.

    Take care

  • Thanks for everyones advice and replies. I.m going to make another appointment and ask for the Vit D, b12, folate and ferritin levels C blood tests to be done. And see if medication could be tweeked until I can see the endo in September. I have screen shot all my results but cant work out how to attach them to my post, any ideas?

  • January

    Serum TSH level 6.3 mu/L [0.4 - 5.5]

    Outside reference range

    Serum free T4 level 13.9 pmol/L [11.0 - 26.0]

    Borderline hypothyroid results.

    Suggest repeat in 4-6 weeks and check thyroid Abs.

    March

    Serum TSH level 3.9 mu/L [0.4 - 5.5]

    THYROID PEROXIDASE ANTIBODY 122 iu/mL [< 50.0]

    Outside reference range

    April

    Serum TSH level 4.3 mu/L [0.4 - 5.5]

    THYROID PEROXIDASE ANTIBODY 121 iu/mL [< 50.0]

    Outside reference range

    High titre TPO Abs, consistent with autoimmune

    thyroid disease.

    May

    VITAMIN D 70.5 nmol/L

    VITAMIN D GUIDELINES (Total 25-OH Vitamin D, inc D2+D3)

    <25 nmol/L Deficiency: High dose treatment and long

    term maintenance dose required.

    25-50 nmol/L Insufficiency: long term maintenance dose

    required

    50-75 nmol/L Adequate: lifestyle advice

    >75 nmol/L Optimal levels

    Serum TSH level 3.2 mu/L [0.4 - 5.5]

    Serum vitamin B12 level 371 ng/L [190.0 - 910.0]

    Serum ferritin level 64 ug/L [22.0 - 133.0]

    Serum folate level 11.2 ng/mL [4.6 - 20.0]

    14th June

    Serum TSH level 2.7 mu/L [0.4 - 5.5]

    Serum prolactin level 1040 mu/L [102.0 - 496.0]

    Outside reference range

    Macroprolactin has been excluded as a cause of spurious

    hyperprolactinaemia by PEG precipitation.

    Significantly raised prolactin

    Suggest repeat to confirm.

    Outside reference range

    30th June

    Serum TSH level 2.8 mu/L [0.4 - 5.5]

    Outside reference range

    MENOPAUSAL HORMONE PROFILE

    Serum LH level 4.7 u/L

    Serum follicle stimulating hormone level 9.6 u/L

    Serum oestradiol level < 100 pmol/L

    Female Ref Ranges: FSH(U/l) LH(U/l) OEST(pmol/l)

    Follicular phase 2-10 2-10 130-500

    Mid-cycle phase 14-60 520-1470

    Luteal phase 2-10 2-10 110-620

    Post-menopause >30 >30 <100

    Serum prolactin level 906 mu/L [102.0 - 496.0]

    Outside reference range

    any suggestions from reading this?

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