So I've been back to the doctor's today for my thyroid results. She told me my antibodies were slightly raised but my thyroid is o.k and no need for further investigation. Come back in 1 year.
I asked the receptionist for a print out of my results.
TSH is 4.7 (range 0.27-4.5)
T4 level is 14.1 (range 11-23)
Antibodies 58 IU/ml (range<34)
Blood pressure is slightly raised.
Feel like I'm on my own and they have washed their hands of me. I shouldn't have all these symptoms and nothing be wrong. Considering self medicating but no matter how many posts I read about the thyroid I'm still very uneducated about it and worried about doing more harm. I feel like giving up, are all doctor's this useless?
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Brad07
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You have symptoms - so make another appointment with your GP and ask for a referal to an Endocrinologist.
See all the GPS if you have to. Keep going back to GP.
Ask for the nutrients tests : Vitamin D, B12 , Folate and Ferritin. Also calcium and Phosphorus too.
You could ask for an Ultrasound scan of your Thyroid and Parathyroids.
I believe the raised TPOs indicate that you have Hashimoto's Autoimmune Thyroiditis.
Your T4 is very low in range and your TSH is HIGH above range. Another day they could both be outside of range.
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Make a full list of all your symptoms (in case you 'freeze' when you go in to GP - usually happens to me after the first negative comment/response especially if I'm tired - I'm useless when my mind goes blank.
Do you have a low temperature - check first thing every morning and if low add to list of symptoms.
We have to keep going back to the GPs . You have symptoms, you have a right to a diagnosis and treatment. We have to be prepared to go into battle - ever so politely of course.
So politely, but firmly, insist.
I had TSH and T4 results within "normal" range ( ie Euthyroid ) 18 months after Hypothyroid results. BEFORE started on Levothyroxine which didn't happen for another 18 months. That's Hashimoto's Autoimmune Thyroiditis - regular Thyroid Function Tests can fluctuate.
My experience of doctors has been they don't like being told what to do or that they are wrong. Can they refuse to refer you? I'm going to get my thyroid and vitamin levels checked privately and then go back. Thanks for your advice
I told her my symptoms, feeling cold all the time, hair loss, slow heart beat, i also have melasma (pigmentation marks on my face) which i think is connected, she couldn't have been less bothered. She told me to come back if I start to gain weight (I'm normal weight).
She also told me my raised antibodies were nothing to worry about until they reach 200.
You could also phone the Endocrinologist's secretary at the hospital and ask how long the wait is if you succeed in getting a referal. Tell him/her how you are suffering.
If you have been to hospital appointments in the past I would apply for a copy of all your medical records via the Medical Records Legal Department. Phone and ask for a name, email and postal address. They said I had to fill in a form, but that's not a requirement now. You never know what you may find.
A medical Consultant I'd been sent to with my Phlebitis, swollen ankles , painful feet & legs, thought I had Myxoedema and wrote to my GP to say 'her Thyroid tests have come back ok but I am not happy . . . needs keeping an eye on '. That was in the 1980's. I found out about that letter when I got my records - decades later. Finally got diagnosed and started Levothyroxine (after having Adrenals checked first) in late 2011. Only because I took advice and asked the most approachable & agreeable GP for the Ultrasound scan.
Over the years /decades I put on weight after every illness , had lots of Upper Respiratory Tract & chest infections. (Moved to a cold damp place mid-eighties). Weight increased by 5&half stone in total. I am short & used to be slim. I also have lots of damage to my digestive tract from beginning to end (literally ). Not to mention the Arthritis.
There are 4 GPS. I've never been hospitalised over my thyroid but I have had issues with bladder pain. I'm not sure who is more approachable, I've been to doctors before for symptoms of thyroid and they've always said it's fine. It's only the last 2 times I've asked for a print out of my results and seen they are out of range. So many people on here struggling to get treatment or to be diagnosed. It's depressing how we have to fight at a point when we're all drained and feel like giving up.
Keep making appointments till they refer or treat you.
Don't feel intimidated or take on any negative thoughts when making so many appointments.
If you know your heart rate is low and you feel unwell you could go to A&E - if that's what you want to do.
If you have chest pain - you can go to A&E. If ECG is OK though, you may be waiting hours to see the doctor.
I would keep going to GP. Have you mentioned bladder pain yet? You could go to GP about that alone, if there is a urine infection you need treatment. Take a sample of urine to GP. In our practice, we can get a sample tested without seeing GP. You fill in a form (give symptom).
Whatever you do get this checked out.
If you get a very raised temp (39) with bladder pain. Call a doctor. If temp reaches 40 then go to A&E.
Urine infections in men are'nt as easy to treat and sometimes require Intravenous antibiotics. I think they would try tablets first though if temp. lower than 39. Not sure. I am not an expert or medically qualified - just speaking from personal and family experiences.
You have to take responsibility for your health and keep on at doctors.
No one else can do this for you.
Get copies of your medical records (easier and free now since new laws 25 May 2018).
I would make a short list of the advice you have had on here as thread is getting long.
OMG! When I was hypo I lost a lot of weight and was going from endo to endo with heart beat of 45' and all other hypo symptoms but they all refused to treat me because I was underweight and I should be gaining weight when hypo... finally I found the dr that gave me T4/T3 combo and I gained 5kg and my health back Search for new doctor!
My heart beat worries me, I'm 55bpm and not athletic but it's worrying with a heartbeat of 45 and symptoms you still had to search around for someone to treat you. I doubt they will even refer me to an endo. I would go private but i don't have the money. Icould cry it all seems hopeless.
When I went by that time to cardiologist, he said I have bradycardia due to low thyroid and he could say it without seeing thyroid results! It all resolved with hormones but because I was hypo for so long, it took a while for my body to lift up from this sleeping mode... I am so sorry you also have to fight to be treated... I was lucky that I moved to Germany by that time and doctors there saw me as hypo and started treatment. I also like you had some skin symptoms - yellow hand palms, all gone with hormones.
Hi. If you have pigmentation marks on your face or anywhere you need to request that your cortisol levels are checked. If cortisol is too low with adrenal issues this causes darker pigmentations on your skin. Thyroid and adrenals are closely linked. Please get your bloods checked. They normally want 9am blood samples only.
I have Hashimoto Disease and have trouble stabilising my thyroid with low cortisol. Gluten free diet helps keep antibodies down. My sister has same but had very high antibodies then got thyroid cancer. She has had hers out but still struggles with thyroxine and very low cortisol like myself. You can insist, in the politest way, to have bloods done on NHS. If your Dr is not listening to you or your symptoms I would contact the surgery manager and make a complaint. They will definitely do the test before a complaint is made official.
Indeed you do need to see a different Dr. Many of use have been where you are now and when feeling poorly it is very frustrating when you feel as if your banging your head on a brick wall.
I have come across many such Dr but I am afraid you have to be insistent that you would like to be reviewed by an endocrinologist.
The hair loss was on of the first things I remember noticing.
Never give up as hard as the battle may seem. Good luck
I'm going on holiday soon, somewhere hot 🙂 once I get back I will be ready to do battle with a different doctor. I can't thank you all enough for all the great advice xx
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.
Then there is Dr Toft's article in Pulse magazine (the magazine for doctors). Dr Toft is past president of the British Thyroid Association and leading endocrinologist.
He wrote:
"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."
You can obtain a copy of the article by emailing Dionne at ThyroidUK
tukadmin@thyroiduk.org
print it and show your doctor. The information is in answer to Question 2.
As for the raised antibodies these confirm autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
Your antibodies are raised but not massively high at the moment. Don't let your doctor put you off by saying they're only slightly raised. Antibodies fluctuate so they will be higher than that sometimes, and lower sometimes. But the confirm Hashi's, it isn't going to go away.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Thank you. It suggests a trial of levo when TSH is out of range and showing symptoms. I told her I had symptoms but she just fobbed me off. I wonder if doctors have to keep to these guidelines or do they just make their own rules up. I'll get a private thyroid test with vitamins maybe have extra to argue with.
The information is from NICE Clinical Knowledge Summary, and whilst not guidelines the information is from National Institue of Clinical Excellence and most doctors follow these suggestions.
You have Subclinical Hypothyroidism, it's a diagnosis, albeit a rather silly one because it should be Hypothyroidism as your TSH is over range, but they wont diagnose Primary Hypothyroidism until TSH is over 10, but you can have a diagnosis of Subclinical Hypothyroidism when TSH is between 4 and 10 where symptoms are present, plus you have antibodies which confirm, without a doubt, that you have autoimmune thyroiditis (their name for Hashi's).
Private test results aren't always accepted by doctors, and if you have a TSH between 4 and 10 again you're in the same position. Also, as antibodies fluctuate you may or may not have raised antibodies with that test.
You have the evidence from the NICE CKS, you have Dr Toft's article, you should pursue this, if necessary with a different doctor. Sometimes we have to push.
"there is a widening of the reference range for TSH with increasing age. Mild TSH elevation (4.0–7.0 mU/L) may be a normal physiological adaption to ageing."
That seems crazy!!! It certainly wasn't true for me anyway (I'm 70). I still felt unwell with a TSH down to 2.99 from 4.7, and T4 within range. In fact felt no different than when the TSH was over range! It was a miracle (and a bit of a battle) that they gave me a levo increase from 50 to 75 mcg, which so far (after only a week) does at last seem to have caused an improvement.
I've turned into a cynical old crow. I think they're moving the goal posts all the time so that they don't have to do anything or spend any money referring you or prescribing anything to help. I'm 70 too and over the last 12 months I've had a lot of health problems. I've found that, at least the doctors at my surgery, aren't interested in finding out what's wrong, they're quite happy to leave you as you are and do nothing. The Advanced Nurse Practioner is far more helpful but out of two referrals he has done - one to follow up with a lung consultant and one to cardiology - neither has produced an appointment. One way of reducing the population.
Pity having a rant to one another doesn't usually get results with doctors, but maybe makes us feel better to know that at least someone is listening!!
I've found one of the practice nurses sympathetic. She was the one who went straight to the pharmacist and got me an increase in Levo
I know but the doctor isn't prepared to do anything. I would like a trial of levo ...I wonder if I'm unlucky or if there's lots of people like me where the doctor says nothing is wrong 😕
I saw a private Endocrinologist (list from here, but now removed after I reported him) He refused to treat me with a TSH 6.8, so no medication would help.
Anyway went back to my GP surgery as I was getting worse, the GP said how did I expect her to help when Endocrinologist said there was nothing he could do.
Fast forward the new year and unable to function at all, my hubby took me back to the surgery. I saw my allocated GP, Thyroid bloods taken, a few days later I received a call saying I needed to see the GP, my TSH was now 12.2, I was stated on Levothyroxine straight away.
I have since learnt that until your TSH is 10 or above the NHS will not treat you, unless you find a GP willing to go against the guidelines.
It's so depressing. I'm glad you finally got the help you needed but you should've been treated at TSH 6.8.
Ive had symptoms of feeling cold and slow heart beat for years, it might be years before my TSH reaches 10 and I worry what that is doing to my health/heart.
It seems we have to wait until we're in a really bad way before we receive any help. It's rubbish
Yes ask for a clinical trial. Because it's a trial only, it means they aren't committing themselves, and it will be "At your own risk" so you can't blame them if it makes you worse or something!
If they still refuse, as somebody else said, write to the practice manager, or someone else who has some clout. Make a list of your symptoms and how they are affecting your quality of life. Point out that it is illegal to refuse treatment bearing in mind the fact that you have definite clinical symptoms, whatever the blood tests show.
Unfortunately, for some unfathomable reason to me, doctors in the UK have been advised not to diagnose patients until the TSH is 10. Whereas in other countries diagnosing begins when TSH is above 3. Tick off your symptoms and print a copy for your GP (probably wont take notice) but we have to try to educate them but they have to follow the 'rules' instead of their intuition.
Your antibodies are rising too. Most don't bother (or understand) about antibodies. If you email Dionne at Thyroiduk.org.uk and ask for a copy of Dr Toft's (physician to Queen when in Scotland) Pulse Online article and highlight where he states if antibodies are present we should be prescribed 'to nip things in bud'. Email below:-
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