I am once again at war with my doctors surgery, I just got my latest blood results back and went in to the surgery to ask for them this morning. The receptionist again told me that they were normal so I asked for the numbers and ranges, To be told they are normal, this went on for several minutes until finally she read the numbers out to me. I told her I would like to speak to the doctor if there were no notes on them because I do not feel well on the dosage, to be told my results are normal and there is no need to see the doctor (results below). Could anyone give me the email address to get the Dr Toft article on results for patients already taking Levothyroxine please? I don't care how normal they say my results are I feel like death warmed up and could sleep day and night at the minute. As I was leaving the surgery I heard the receptionist tell her colleague I was a hypochondriac and was really upset by this comment. I'll be going back in on Monday to demand an appointment and will hopefully get a different receptionist.
Results as follows:
Jan 2018 Results (50 mg Levothyroxine)
T4 - 9.6 (12-22)
TSH - 11.5 (0.3-4.2)
TFT Antibodies >600 (0-35)
May 2018 Results (75mg Levothyroxine)
T4 - 11.2 (12-22)
TSH - 5.49 (0.3-4.2)
July 2018 Results (100mg Teva Brand Levothyroxine)
T4 – 12.2 (12-22)
TSH - 3.75 (0.27 – 4.2)
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Your TSH is improving as the dosage is increased but its still too high for the amount of t4 your taking. It should not be over 2.0 is you are already on medication. It is normal for a regular person but unfortunately not for you. Hopefully you have better sucess on Monday.
"results are normal and there is no need to see the doctor"
Response:
"When and where did you obtain your medical degree that qualifies you to comment on my results?"
As far as not giving you a copy of your results, you should inform the unhelpful receptionist that the European General Data Protection Regulation (GDPR) gives you access to your results and medical records free of charge so you would like a print out.
As I was leaving the surgery I heard the receptionist tell her colleague I was a hypochondriac and was really upset by this comment.
I would make a complaint to the Practice Manager about this. It is not a receptionist's place to "diagnose" a patient with anything, and she certainly should not be discussing you with her colleague, let alone in such a derogatory manner.
**
Your results are only "normal" in the sense that they are within their ranges; however, that is not optimal as the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well. Your results are showing that you are improving slowly but it's taken 6 months for your FT4 to raise from 9.6 to 12.2 which is an awful long time for such a small improvement. Protocol is that first retest is 6 weeks after starting Levo, increase dose, retest every 6-8 weeks until your levels are where they need to be for you to feel well.
•The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.
• The initial recommended dose is:
◦For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
◾This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
Although it says dose adjustment every 3-4 weeks, as it takes 6-8 weeks for the full effects of a change of dose, retesting every 6-8 weeks is better. Also, taking Levo on hour before or two hours after food is best as the stomach needs to be empty.
Also scroll down to "Thyroxine Replacement Therapy in Primary Hypothyroidism"
It's possible that your Hashi's is having some effect. I can't see anything in your previous post where information about Hashi's has been given.
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.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
You can obtain a copy of Dr Toft's article in Pulse magazine by emailing Dionne at ThyroidUK
tukadmin@thyroiduk.org
and highlight Question 6 to show your GP, that's the part which says
"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)."
Thanks for your reply SeasideSusie, my doctor gave me no information on Hashi's she didn't even tell me I had Hashi's its only from being on here and having my test results I found out my under-active thyroid was hashis. I've been Gluten free, dairy free, caffeine free and soya free since I got my results in Jan 2018, my doctor refused to do a celiac test on me saying there was no need as I have diverticulitis apparently. I'll look in to the selenium, i'm hoping to be able to afford to get the medichecks Thyroid Check UltraVit rT3 test done privately (waiting for next Thursday to order it) hopefully it will tell me what my vitamin levels etc are and if the diet is reducing my antibodies. Thanks for the email address I've requested a copy of the article so I can talk to the doctor on Monday.
You really don't need the rT3 test, FT4 is generally high with a low FT3 when there is a rT3 problem. It's an expensive test, takes a lot longer than the other tests and I really wouldn't bother. I would get the Thyroid Ultravit and that's on offer with £20 off at the moment
Yes, we’ll said seaside Susie. I actually got hot just reading that post as my blood boiled. How rude that receptionist is. She should be disciplined for that comment and the way she treated a patient. Why do the job? Find another one.
I agree with SeasideSusie , make a formal complaint about that receptionist. She is going beyond her remit, and being rude into the bargain! Not to be tolerated!
I would put in a written complaint about this person's comments to another about you personally and you could overhear. This is irresponsible and she should lose her job as she is not trained and permitted the patient to overhear what she said to another person.
She has no knowledge about hypothyroidism and the awful symptoms we can have. That's why we do not pay for any more prescriptions once diagnosed with a possibly fatal disease if untreated.
You need another increase of 25mcg every six weeks until TSH is 1 or lower. The FT4 and FT3 should be in the upper part of the ranges.
Do you always get the earliest test, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards?
GP should also test B12, Vit D, iron, ferritin and folate.
Thanks for your response, I've drafted a letter of complaint to hand in on Monday. My bloods are all done at 9am and are fasting, I take my levo at 6am but do not take on blood test days. GP has flat out refused to do any testing on me except the TSH and T4 tests. I'm hoping to get the medichecks Thyroid Check UltraVit rT3 test done privately next Thursday.
These results clearly show that your FT3 is much much lower than previous test
It's likely that Teva Levothyroxine does not agree with you
Many, many patients do not get on with Teva at all
Presumably you are not lactose intolerant? If not then swop back to your previous brand
Your January results showed you have Hashimoto's. Low vitamins are extremely common as result
Insist that GP test vitamin D, folate, ferritin and B12 if these not been done recently
Are you on strictly gluten free diet? If not also request coeliac blood test from GP
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Thanks for your reply SlowDragon, I was surprised to hear Teva doesn't seem to agree with most people. I switched to Teva because of horrible stomach cramps and they have actually got better. I've been gradually gluten free, dairy free, caffeine free and soya free (in that order) since being diagnosed in Jan and reading the posts on here but still had major issues with having to go to the toilet every time I ate or drank anything (even water). The doctors refused to investigate further after one decided I had diverticulitis 3 years ago after I had described my symptoms to her, It was never tested and confirmed, is there a test for this? I also had my gallbladder out the year before so a lot of my symptoms get put down to me eating cakes, sweets and sugary biscuits (I wish, i only have to look at chocolate and I put 5lbs on). My stomach and bowel issues do seem to have improved though in the past two months since switching my brand from the generic one, maybe its just coincidence but I can actually leave the house and take my kid out (for more than an hour) without having to eat a packet of imodium and refuse anything to eat or drink when out. My GP refused to test me for celiac and has refused to check any vitamin levels so I'm waiting to get them done privately.
I'm a nurse and can't bear reading this. I spend a lot of time equipping patients on how to approach their GP's.
You are of course completely entitled to request a GP appointment without having to explain yourself to the receptionist, so do this and when you are with the GP explain the attitude that you were met with, a formal complaint may be the right way forward if you are not satisfied it will be dealt with.
GP's employ them, its run as a business.
Stand your ground with the evidence from the research you are obtaining and don't tell him/her their job, just keep pressing home your symptoms. Write them all down with as much detail as possible and if needed keep repeating yourself until it sinks in.
Sometimes the clinical picture doesn't match the figures- in fact this happens a lot, so that's why the GP needs to focus on you and NOT the numbers.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hopefully you have better sucess on Monday.
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