Hi I am new and my endo has said he does not understand my symptoms (tiredness, weight gain, heavy periods, dry skin, imbalance) and believes them not to be thyroid related even though I have underdosed results.
The one endo I got on well with has moved to a London hospital (I live in south west) and I want to go back to seeing her since she understood my symptoms.
Would it be too much to ask my GP to refer me to her?
I was diagnosed 2012 with hypothyroidism and I take 150mcg levothyroxine.
Thanks
TSH 6.36 (0.2 - 4.2)
Free T4 13.8 (12 - 22)
Free T3 3.2 (3.1 - 6.8)
Written by
Halsey19
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I'd ask your GP to refer you on the basis that the current 'endo' is not qualified to practise endocrinology. I would check this 'endo' out on the GMC website to make sure they are on the specialist register gmc-uk.org/ . See "Check a doctor's registration status" on RHS.
You are currently undermedicated. Make sure you take your levothyroxine away from coffee and meals.
You need an increase in levo in order to bring your TSH to 1 or lower. Your Free T4 and Free T3 are at the bottom of the range instead of near the top and definitely you should ask GP for 25mcg increase and in six weeks have another blood test and 25mcg increments should be every six weeks till you feel good and have new symptoms. Some doctors make the terrible mistake of thinking if TSH is somewhere in the range that patient is on sufficient dose but not if TSH is above 1. Or they adjust dose in order to keep the TSH in range as they believe a low TSH will give us a heart attack etc. Not true.
It's because 150mcg isn't enough. If your endo doesn't understand that he has no business treating thyroid patients.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher @thyroiduk.org if you would like a copy of the Pulse article to show your GP or endo when you request a dose increase.
You should have a follow up thyroid test 6-8 weeks after dose is increased. Arrange the blood draw early in the morning when TSH is highest and fast (water only) as TSH drops after eating and drinking. Take Levothyroxine after your blood draw.
Herein lies the problem - he is a Diabetes specialist. He knows diddly squat about the thyroid - that is until you remain under medicated over a long period of time and could then end up with yet another endocrine disorder - diabetes.
People here on the forum are more experienced and more able to help you.
Ok. I thought the endocrinology bit meant he knew about thyroid but I guess when he asked me to come back in 12 months I should have guessed something was wrong
If you look in a dictionary, yes, endocrinology should cover thyroid - it should cover the whole of the endocrine system and all the hormones. But, in reality, it doesn't, I'm afraid. They seem to think that all they really need to know about is diabetes and insulin, and that thyroid is - and I quote - 'easy to diagnose and easy to treat'. So, they think it's a doddle and they can just wing it. How wrong can you be!
So, your assumption was understandable. And, in an ideal world it would be correct, but this world is far from ideal, I'm afraid!
I think most specialise in diabetes as few seem to know anything about hypothyroidism and as proven by yours - he knows no clinical symptoms or how to eradicate them.
We go to Endo hoping that they will know more than the GP and instead we are very disappointed that the consultation has not been rewarding are no better off than before your appointment.
You can ask to be referred to your endocrinologist of preference. It might be that the CCG consents to an Out of Area referral (if necessary) or refuses unless she's within their referral area under Choose and Book.
In the meantime, the experience of members here is that there needs to be a watchful eye on the levels of thyroid hormones in conjunction with the vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for effective use of thyroid hormones (whether our own or supplemented/prescribed ones).
If you have the results of your recent vitamin and minerals levels like iron, ferritin, folate, vitamins B12 and D as well as the FBC, please post them, along with their reference ranges, as it will help members to comment.
If you don't have the results, please obtain a copy by contacting your GP's reception, and then post them, with details of your levo. etc. and that might allow members to make helpful observations or suggestions.
Your TSH is above range and FT3 and FT4 right at bottom of range. The endo you saw must be an complete idiot to not have increased your dose
Your GP too. They could and should have increased dose by 25mcg. Retesting after 6-8 weeks
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Highly likely to have very low vitamin levels as result
Vitamin D, Folate, ferritin and B12
Suspect you have raised antibodies too?
This is Hashimoto's or autoimmune thyroid disease
Have you ever had higher dose in the past, or been on T3 and then had it stopped?
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
We have seen 100's have same terrible mismanagement
Endocrinologists don't understand (and seem disinterested in learning) that we have to be strictly gluten free and supplement vitamins like mad to be able to improve on T3 as well
When T3 is withdrawn it all spirals out of control
Gluten and vitamins need sorting first and levo increasing (TSH around one and FT4 towards top of range) before considering adding T3 back.
They are so unknowledgeable and you can say you got the information from the NHS Choices for information and advice - Healthunlocked Thyroiduk.org.uk. of which you are now a member.
If a person is stubborn and doesn't want to improve his knowledge and let patients suffer unnecessarily, we should have an 'excellent' 'good' or 'awful' list.
I've thought about that for a while as well. May well speed up wellness by finding out before we waste months with an idiot. Don't think it should be confined to taking away T3 only though but more general as some are obviously clueless
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Does anyone know of a good endo near Worcester please? 
Symptoms
Not heard from endo
Worried about endo appointment
