Advise please

[dpa87]

So just saw my GP today to discuss my TSH results, not sure what to do next as I have told her that I am unhappy with my treatment over the last ten years or so. In 2004 my TSH was 0.94 and has apparently been steadily rising to my last test four weeks ago at 7.8. I have had weight gain and hip pain for years with erratic periods and have always been told it's menopause. My thyroid was removed due to Graves' disease in 2000. My vit d was 55 which she says is fine. I said if she was not prepared to investigate further to get me to optimal health I would like a referral and she says I have to wait for next set of results but will only order TSH as lab would do T3 if required. Does that sound reasonable ? Any advise greatly appreciated

[Treepie]

Different labs have different ranges for all tests which is not helpful.An NHS test I had gave VitD as <30 deficient,30-50 insufficient, > 50 sufficient.

A private test had : 25-75 borderline insufficient , 75-200 optimally replete ,>250 possible toxicity if sustained. In both cases the measure was nmol/L.

Looks like you had a similar lab to my NHS and it looks like you are only just within sufficient.I think you probably need more given this is sunny? summer and it should be higher.

WasB12 tested?

Agree with really fed up you need more thyroid meds.

[dpa87 in reply to Treepie]

GP says B12 was tested 18 months ago so not necessary now? Looks like I have an uphill journey ahead

[Treepie in reply to dpa87]

So what was it and what was the range then? You need to find out.

[dpa87 in reply to Treepie]

Will get all the results printed out went I see her next and post on here.

[Clutter]

Dpa, your dose was recently increased and you should have a blood test 6-8 weeks later to check levels. The goal of Levothyroxine is to restore the patient to euthyroid (normal) status and for most people this will be when TSH is just above, or below, 1.0. It was remiss not to increase your dose when TSH was 4.4 in February.

Your GP may refuse referral to an NHS endocrinologist if she feels she can manage your hypothyroidism now but she will probably agree to referral to a private endocrinologist if you want to use your medical insurance. She has neatly copped out by only ordering TSH and saying the lab will test FT3 if they deem it necessary. Labs mostly decline to test FT3 when it is ordered unless TSH is suppressed <0.03. TSH rises in response to low FT4 and FT3 so it's not worth testing until TSH is around 1.0 if you can persuade your GP to order it then. If not, you can order private thyroid tests.

VitD 55 is in the insufficient range 50-74. NHS rarely prescribes vitD unless it is inadequate <40. The replete range is 75-200 and most people are comfortable with vitD around 100. Supplement 5,000iu D3 softgel capsules, drops or spray for 3 months to boost levels then reduce to 5,000iu alternate days. Take vitD 4 hours away from Levothyroxine.

[dpa87 in reply to Clutter]

Thank you once again for all the advise, so I have placed an order for Naturewise Vit D3 5000iu softgel capsules and will dose as you have advised. I will have bloods again on 11/09/2015 and have already advised my GP I would like a copy of all the results. I said to her that I just feel as if my GP's have failed me as I have been to so many appointments regarding my issues and no one has ever commented on the fact that my thyroid TSH levels over the past ten years has slowly increased from 0.94 to 7.8. I accept that all issues would possibly not be related to thyroid but why was that never investigated? Anyway we will see what new results indicate. Thanks again Clutter

[Barrister]

My son had blood tests last week. Whilst his TSH was okay (1.28 - never diagnosed with hypo) his Vitamin D was 35! When we first went into the doctors room he said "good news, all the results are normal". It was only when I said that I would like a copy of all the results that he said that vitamin D was " a bit low" and to take 800iu for a while. Of course, I know better than that and have ordered a much higher dose. Also his B12 was very low, although in the so called normal range so he will be supplementing that too. Sorry, I didn't mean to hijack your post, DPA87, just pointing out that GPs ( whilst mine is usually pretty good) really don't have a clue! Clemmie

[dpa87 in reply to Barrister]

No problem hijack away. Its great to have the support and info from this site.

[SilverAvocado]

Dpa, this sounds like a clear case of you GP's not doing what they should have done, adjusting your dosage as your body's needs have changed over the years. I don't think there is anything strange or unusual about this. Once we are settled on a thyroxine dose things don't just stay the same forever.

My elderly landlady has no thyroid. I don't know the full story, but a few years ago she suddenly changed to needing 100mcg less Levo almost overnight. She is quite frail and had to be hospitalised before they found out. She has a good few stories, tho. Her thyroid was removed almost 40 years ago and she was sent home with no replacement at all!