Hi,my daughter has a high TSH and been diagnosed hypothyroid.
Started on thyroxine 25 mcg and is now on 300mcg,she seems to respond to to T4 and then TSH goes up again alternately every 6 weeks.
I don't know her exact blood results,she has lost no weight,hair falling out,brain fog and the usual fatigue.
I have asked her to ask the doctor to refer her and doctor keeps saying 'well you do respond to Thyroxine so we will keep going."
Anyone any suggestions.
Hi jeremy,
I really do sympathise. I can only offer you advise based on my own personal experience. I was diagnosed hypoin my mid thirties . I suffered many months with aweful symptoms until I asked my GP to runs some blood tests. It was only then that they discovered my thyroid harmones were very wrong. I started on 25 mch and over 6 months increased to 225mch. Evenutually because I could feel no improvement - gaining weight, hair falling out, tired all the time and feeling a bit down - I pushed my doctor as much as I could to refer me to see an endocrinologist as I did not want to increase my dosage anymore.
Eventually I asked for a second opinion and then my GP decided this was not necessary and referred me . I guess the moral of the tale is to be very persistant and keep pushing your GP - as this is a very specialised area and most GP's do not run all of the necessary blood tests nor (with respect) do they always understand the intricate detail of how to interpret the results. . Thankfully my endo was able to spot some further issues and refer me on himself , which has save a lot of time and more importantly my health - so you must keep pushing as your daughter (in my opinion) is on an extremelpy high dosage already. Hope this helps....
x
PS I would stronly suggest that you ask her GP for copies of all blood test results since her problems began - these will be invaluable in the future, particularly when seeing the endo for the first time or getting a second opinion - will also save much time
Thank you,she has been collecting a print out of her TSH for about 6 months now,she is well informed as has a Bsc hon degree but is struggling to get her GP to refer her on.
I keep insisting that she must insist.
I agree GPs do not know how to treat some Thyroid or other hormonal problems unless it's straight forward.
I had a thyroidectomy many years ago,I am on 150 mcg now but have never had the problems my daughter has.
Thanks for your reply,so many people seem to be having problems getting the correct diagnosis and treatment.
Hi,
If your daughter can get a print-out of her latest blood test results, with the ranges, post on a new question for comments.
If your daughter is on 300mcg of levothyroxine and still has a high TSH, something is not right. Either she cannot convert levothyroxine to liothyronine (T3) and she may have a gene defect D102 which means she cannot convert.
To know whether or not she is converting levothyroxine to T3 (also known as liothyronine) her doctor should do a Free T3 blood test and it should be towards the top of the range. She can get a private FT3 test from a private lab and there's information on Thyroiduk.org.uk and you can get a small discount if youput Thyroiduk.org.
T3 is the active thyroid hormone required in all of our receptor cells and we cannot function properly without it. Also your daughter seems to have lots of clinical symptoms
thyroiduk.org.uk/tuk/testin...
thyroiduk.org.uk/tuk/testin...
It can take months to get to a dose of thyroid hormones that makes you feel well and sometimes the addition of T3 to T4 can be very helpful.
Next time your daughter has a blood test, it should be the earliest possible and fasting (she can drink water) and take levo afterwards. Her last dose of levo should be around 24 hours before the test. This will be more accurate and get a print-out of the results with the ranges to post. If she hasn't had Vitamin B12, Vit D, iron, ferritin and folate checked ask for these to be included in the blood test at the same time.
"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Thank you for your reply and advice.
At the moment the doctor is only testing TSH,my daughter said she was going to ask for FT3 T4 and antibodies at her next consultation.
Her TSH will be done a week to ten days before her doctors appointment.
This has been going on for 18 months now,she was on low dose Levo for a number of years before this and GP says she has been under treated since she was 17 ....she is now 33 and is really struggling with her weight and other symptoms.
I will pass on your reply to her thank you.
It is very important that your daughter is treated to an optimal level. If we are underdosed it can lead to other more serious problems which we definitely don't want. It's a pity our doctors are so poorly trained in the UK in that all they mainly take notice of is the TSH which is from the Pituitary Gland in the first place and is nothing to do with the thyroid gland. It just raises the TSH if thryoid gland is struggling.
Clinical symptoms are not known by the 'modern' doctors neither are they taken note of. You are usually prescribed something else for the symptom when in fact it is thyroid hormones which are required to free us from symptoms. Before the blood tests were introduced all medical students were trained in clinical symptoms and diagnosed and treated the patient with Natural Dessicated Thyroid Hormones until well.
Totally agree,doctors treat blood tests now not people and symptoms.
Jeremy72, Hypothyroidism is usually treated in primary care but when the patient isn't responding to treatment they should be referred to endocrinology. 300mcg is a substantive dose and if your daughter's TSH responds temporarily to a dose increase and then rises afterwards she may have some degree of resistance to thyroid hormone and should be referred. I suggest she makes a formal written request for referral and insists her letter is put on her medical records.
_______________________________________________________________________________
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Is she on any other medicines?
No other medication,except contraceptive pill.
No she has not been tested for B12 folate,ferritin or vit D,I am a retired nurse and really concerned at the time this has gone on.
I am trying to persuade my daughter to get tough with the GP.,.
Believe me she is well up and researched on thyroid,she has a Bsc Hons and is well into research.
My concern is I have been pushing her to push GP for referral as I feel there is more than thyroid going on here.
Yes if it was just straight forward a GP would treat that,but too many symptoms and too many anomalies with tests.
I am hypothyroid myself but not had the problems she is having,I am also a retired SRN so we both know what we are talking about.
No she has not had a scan.
is there a simple guide to explain thyroid disease to a layman?
Blood results and visit to gp today
Trendy to call hypothyroidism trendy disease ( going on in Finland)
Gp sticking to blood test ranges
I am reluctant to start my 11 year old daughter on Thyroxine.
