The attached photo is what I got back from my GP after asking for Thyroid Function Test. I had a Private test done with Monitor My Health a while back (results below) which prompted me to contact my GP and ask to be retested and be given an increase up to 100mcg from 75mcg. They didn't even bother to contact me and let me know the results. I had to go up to the surgery and ask for a copy , which they were very reluctant to give me.
Since day one of being diagnosed with Graves right up until I came out of hospital after my Thyroidectomy, they've made mistakes with my meds, including not weaning me off Propranolol after my surgery (which caused loads of problems down the line) not following up my consultants instructions and just generally being rubbish and unhelpful.
I am seriously thinking of firing off a letter of complaint to the practice manager. I've gained massive amounts of weight, I've always been a healthy 10 stone and followed a pretty healthy diet and exercise regime. I dropped to 8 stone 4 when I was hyper last year, now I'm 11 stone 3
I am so frustrated. There is something very wrong but they just will not listen. Any advice Thyroid Guru's?
THYROID STIMULATING HORMONE
10/08/2021
5.98 mu/L
TSH levels high (normal range 0.27 - 4.2 mU/L)
THYROXINE
10/08/2021
16.8 pmol/L
FT4 levels normal (normal range 12 - 22 pmol/L)
TRIODOTHYRONINE
10/08/2021
2.9 pmol/L
FT3 levels low (normal range 3.1 - 6.8 pmol/L)
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Helen161
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So TSH is much too high at 5.98 - and still too high albeit lower on their test. This in itself should get you that dose increase, as you should be getting regular 25 mcg increases until TSH is always less than 2 and probably less than 1.
At the same time, free T4 is 16.8 (12 - 22) so only 46.8% through range, further supporting that dose increase, as you want this at least 67% through range, and free T3 is actually below range at 2.9 (3.1 - 6.8)
Seems like the GP is asleep. Just how much more rubbish do you need these results to be before s/he'll do anything?!
Just to say, you could read my previous post again as I don't understand cut and paste !!
I know, please don't tell me it's so easy as that exacerbates my Graves !!
Hey Ho !!!
Just go one step at a time and start reading up and getting your ducks in a row :
Your T3 is under range, this is not acceptable and a referral to an endo should be the next step :
Maybe check out those medics on the Thyroid UK patient to patient recommended list held at Thyroid uk head office - and be referred to someone who has a brain and treats ill people with the appropriate medication and takes the oath " first do harm " seriously.
I was thinking of changing to a different GP practice but I am going to complain to the practice manager before I do that. I've been wondering how many people are suffering like me due to lazy negligent doctors 😒 . I haven't seen a doctor face to face since January and that was the last appointment I had with my Endo before he discharged me back to the care of my GP
Graves is stress and anxiety driven, so please try and stay calm - I know it's not easy but speaking from experience challenging the system simply exacerbated my symptoms and I became more unwell.
Read up, become your own best advocate and beat the system in your own way.
I am trying honestly🙂 I am curious to know how you manage to self medicate. Its a concept I've never even thought of doing and I'd be interested in any information you can give me on how it works
I think at this point in time you need to try and get your treatment through the legitimate NHS channels :
No one wants or chooses to self medicate and we would all prefer to be in the system.
You need a referral to an endocrinologist - your T3 is below the reference range and the logical solution is to monitor and dose on both your T3 and T4 levels with a view to have these both balanced within the ranges.
There is synthetic T3 - Liothyronine just as there is synthetic T4 - Levothyroxine.
No thyroid hormone replacement works well until your ferritin, folate, B12 and vitamin D are maintained at optimal levels so you might like to get these checked.
If your doctor will not oblige there are private companies who will run these blood tests for you and you'll find them listed on the Thyroid UK website who are the charity who support this forum.
It's also a concept I never dreamt I'd need to consider - it wasn't a choice but a necessity, if I wanted my life back.
Why would anybody self medicate - until they find themselves in a situation, which other people, who have not been there, find very hard to comprehend or understand.
Being dyslexic simply compounded the time it took me to read up and challenge my treatment for primary hypothyroidism after RAI thyroid ablation for Graves.
After over 2 years of various NHS o/p appointments I had no resolve of my debilitating symptoms and was discharged with just a low ferritin flagged and with my doctor referring to me as a conundrum.
Housebound I purchased Elaine Moore's first book thinking maybe that Graves I had around 10 years ago had come back.
I read Graves doesn't go away and there is a slightly higher incidence of patients with left handedness and dyslexia and I felt I had come home. I read about the symptoms that can be experienced after RAI treatment for Graves and saw myself.
I purchased a 2nd copy of Elaine's book for my doctor but she declined to accept it, though she knew of my struggles with dyslexia.
Your Thyroid and How To Keep It Healthy written by a doctor who has hypothyroidism was written for patients to help themselves and Barry Durrant-Peatfield writes in an easy to understand manner and one of my " go to ' books.
I understand you have been discharged but your surgery and treatment was in this current year, surely you are able to get a back to the endocrinologist just for a further follow up and reassurance ??? of your current thyroid levels which are dire.
If you have a telecon you can prepare and have notes in front of you. I have successfully ‘steamrollered’ on three telephone consultations now. The last one I sent in the GP All my results since I was diagnosed, in date order and normalised to percentages within range so different lab results could be compared (NHS vs Private). I also sent in a Red Whale update on Thyroid advice for GPs and also two other references to help them with interpretation of results as well as a covering note explaining need for dose increase (patronising I know, but needs must).
Yes! 🤣 The one who wanted to leave me on 75 µg because I was “normal “I told off and gave her a lecture on free T3 antibodies and vitamin deficiencies as well as all the other stuff after she told me I didn’t know what I was talking about, she Only being able to tell me about free T4 and TSH which is all they test for. So I got my 100 µg of Levothyroxine and she got a flea in her ear. I decided to get an information pack together for the next GP appointment, when I would need to up it again that’s when I rolled out the references and all of my results on a spreadsheet in date order and normalised to percentages within range.
There is one of two things going on here, either there is a note against my name now that I’m an absolute bitch and I’m cool with that if I get what I want or The GP took one look at all the information I had provided and thought blow me I’m not gonna get through this in 10 minutes. Either way I’ve got my increase to 125 µg and have been feeling quite well since.
One thing I keep coming across on this site is that if you let them bugger about with your medication it’s much more difficult to get on a level again and some people appear to have never quite got back to where they were. So I am going to be quite fierce when dealing with these medics as they do not realise the damage they caused through their ignorance.
You are an inspiration! You are correct in saying that it is difficult to regain former health levels when a careless and - let’s face it - poorly-trained GP messes about with your dosage. Won’t reiterate my 2018 experiences, but suffice to say that without this forum, I would not have had the knowledge nor tenacity to argue with a cardiologist in front of a ward of patients and a fleet of medical students...with an already slow pulse, she wanted to put me on beta-blockers because I had had chest pain ( which had cleared up overnight after a massive cocktail of anti-coagulants..). All after a ridiculous and speeded up reduction disaster.Onward, ever onward. To all of us, it is a daunting task at times when we meet this miasma of preconception from medical staff.
But I agree with you that, paradoxically, it may be easier to state our case online than in front of a sometimes impatient and dismissive practitioner. And I think that, finally, the rôle of nutrition may be coming into their vision.
Finally, always worth looking at the NHS’s own guidelines from May to see some light entering the recommendations?
The people on this forum are the inspiration I draw from. We are selling our guesthouse and Hopefully I will be less time pressured and able to dedicate a bit more time to do a desk study of the knowledge base (good and bad) and try to introduce the concept of prioritising the humans over blood tests that the GPs in the main do not understand anyway. I have a long term goal.....
Can you please explain again - for those of us with brain fog / any uncertainty about how to steam roller their GP, as you have done to good effect - exactly what was in your information pack.
And what you said about your preceding thyroid test result levels, to demonstrate your need for a more punchy level of levo?
Let me dig out my dossier and try to produce a crib for anyone who would like to use - I used references given to me by this forum but the combination seems potent. But be warned read yourself first! LOL!
I’ll see if there is some way to share the spreadsheet too, then all people have to do is enter their results- you can use excel, or a shareware programme called Libra - I use Libre as it is not so ‘top heavy’. Microsoft is such a huge programme that it slows my laptop down 😱
I give Libra a donation every year as a thank you- cheaper than Microsoft and they have compatible format - if you ever go back or want to share.
Unless the doctor can PROVE your dose is too high, you are within your rights to refuse a dose change. Just say 'no, I forbid you from changing the dose'. Then theycan't.
Good for u! I do the same with my GP practise.....as a rule they now leave me alone leaving me to self monitor apart for the annual statutory requirement of a blood test. Ive found GPs know nothing about thyroid.....they tell you hogwash so knowledge is power because once you can easily and calmly come back with the facts they are lost. One male GP was so annoyed at my firm but polite stance he told me I was a diabetic cos Id failed the blood sugar test. I hadn't my bloods were totally fine. I avoid him. Some GPS are nice but all are totally ignorant & will tell you all is well if your TSH (all they measure) is in range or slightly over. Mind blowing! The damage they cause has to be immense. So you do have to be firm but pleasent with them & everytme explain things calmly like a broken record. Am sure my file has a label on it saying awkward patient but I don't care either so long as I get my treatment!!!
Just a thought. As you were only discharged back to the GP in January from the Endo's care, are you able to contact the Endo directly? I have to say that I would certainly try that after how badly your GP has treated you. Good Luck.
“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.”
Dr Anthony Toft PRCPE CBE LVO
Dr Toft isn't as wise as some of the wise ones on the forum but this lift, directly from here: thyroiduk.org/if-you-are-hy... is something you can legitimately show your muppetacious GP. I was left to 'rejoice' (Undertone 'now go away and stop bothering me') when my TSH decreased to 4.75, the very top of the range, by my asshat GP 11 years ago. Needless to say, I no longer take his advice regarding thyroid disease. I hope that you find a solution and start to feel well soon.
Thank you. I already have that article from Pulse magazine with Dr Toft, which I do intend on showing my GP, along with some other evidence I've collected over the last week. If I don't get any joy from her after that I will be seeking a new GP !!
And this one if you don't already have it .. advice for GP's written by specialist registrars in cardiology and endocrinology saying get TSH between 0.5 and 2 healthunlocked.com/thyroidu....
It should be relatively easy to push GP for an 'trial' increase in Levo dose using this "to see if it improves how you feel" , as there is no issue with you TSH being anywhere near 'too low' .
So how long have you been on 100mcg dose levothyroxine when GP test was done?
Do you always get same brand levothyroxine at each prescription ?
Many people find different brands are not interchangeable
Was GP test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Obviously just testing TSH is completely inadequate
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
I’d just get a call with a doctor and insist on a referral to an Endo. Remind them the aim of medication is both to get thyroid levels in range and to alleviate symptoms. And that where symptoms are not alleviated a referral to an Endo is indicated.
Your TSH is much too high indicating you are under medicated. TSH should be around 1.00. To achieve this and feel much better you’ll need an increase in Levothyroxine dose. Looks like you need Liothyronine also as your T3 is under range. Are you a poor converter of Levothyroxine? Do you have the DIO2 faulty gene? Why not do the DIO2 gene test through Regenerus Laboratories to check. If positive this could seriously help your case. You are definitely under medicated.
Complain to them and to PALS. Give this and the preceding incidents as detail of your complaint. Explain that what is lacking is any basic continuity of care or attention to the needs of you, the patient.
I had to change GP practice in the end, after 6 years of bad care. I can give examples to make your hair curl. But 2 years in to my old GP practice, I did put in a complaint to PALS and that did make doctors more attentive to questions and requests. But then post-Covid, the lack of joined-up care became even more sublimely awful. In February I had to take my son to A&E and in
March my daughter to A&E. On both of those occasions the A&E doctors I saw told me - when I explained how we had got there, after many days of asking to see a GP for an urgent matter in both cases - that I should file a complaint about the practice. But I thought I should - after 6 years - vote with my feet. The issue with my daughter was with her breathing. The GP practice knew this. I stressed to the receptionist gatekeeper more than once, when she turned me down for an appt, that GPs have a duty to see a child who is having breathing issues as a priority case…. and still got zero attention. She even went to the head of the practice to see what he said. Nada.
So go to PALS first. If you have a small GP practice, I personally think you have more chance of improving your level of care. I have found to my cost that the larger “super practice” is focussed on the bottom line, not on the patient.
Hi try asking or reminding of the NICE guidelines. nice.org.uk/guidance/ng145 Hope you get somewhere as it really does add pressure on top of a life changing disease, no sleep, weight gain, increased cholesterol, extreme fatigue are just a few things we deal with!
As previously posted by others, quite apart from the mismanagement of your condition, your results show unequivocally that you are currently undermedicated. Face-to-face appointments are not necessary to address this situation in the first instance. You can formulate an email containing details of what your levels should be; even NICE guidelines will provide support for you here. Then request the required increase in levo, and a date for a re-test to assess what effect this will have had. Sometimes this is easier to do remotely, as you will have all the information to hand and can communicate it clearly without interruption! Also, there will then be a paper trail for evidence of your request and the response. If the response is negative, then copy the email to the practice manager with a covering note asking them to explain, at the very least, why the GP is not following NICE thyroid treatment guidelines. You have nothing to lose, so go for it! Good luck.
Well I wonder if we have the same gp🤔 in the end I had to take my health in to my own hands with the help of this great site like you I had graves took my doctor over 12 months to diagnose me I eventually lost my thyroid in 2019 due to it being so toxic like you I was at my lowest weight since I was in my 20s bk in to size 10s my normal clothes size was 12/14 never really vered from that good diet ect, my surgery had me in circles with meds for over 8 months trying to force T4 on me the endo eventually found out I was not a good converter, my bloods were awful I was eventually put on T3 and decided to go it alone with help from here, I've put on around 2 stone and are finding it very hard to loose it even now my bloods are in range, but my gp and endo wanted my TSH at 1.55 or 2.50..its in a letter from my endo I should be aiming for a TSH of 2.50 or above🙄 my TSH is now 0.80..and its fine.. I'm no expert but your bloods don't look great and I'm sure the great folk on here will respond to you.. But what I've learned is you have to take your own health into your own hands because our GPS and endos have no clue about our condition 🙄 best of luck on your journey ❤️❤️❤️❤️
I have been thyroid-less for almost 5 years now and I have had one horror story after another when it comes to my health care treatment. You need a new doctor!
Years ago a doctor lowered my thyroid medicine from 112 mcg down to 85mcg. She did this because I had taken too much vitamin D3 and my levels for that had rose way over the limit. This lower dose caused depression, sleep problems, poor appetite and exhaustion. My TSH score however lowered very slowly over the next year and was in the limit until the following year. (Never had my T3 tested )When TSH finally was over the 5 mark I was given a new doctor who put me back on 112. I later went on a hormone estrogen replacement with Pueraria Mirifica and this made me need even more levothyroxine so I was raised to 125 and have been happily on that amount for years. What I learned about my thyroid was that 1. sunshine (vitamin D3) makes you need lessT4 so in the summer my test results will show a bit lower TSH score. Therefore I like to be tested in winter or very early spring. (I do not take D3 anymore but only what is in milk and food additives )
2. T 4 is converted to T3 in the gut flora so good gut flora helps this conversion. The body stores T4 in the cells to maintain an even amount for use.
3. Vitamin C will help assimilate the levothyroxine when taken with it in the form of juice. I wait 30 minutes before I eat when I take my Levothyroxine and 1 tablespoon of ACV right before I eat breakfast.
4. I used Pregnenolone to help with adrenal exhaustion and depression when my dose was too low. Used it very sparingly, like 1 mg for a few days and then a few days off, because it made my heart race. It improved my energy and gave me a sense of well being.
5. I learned that the doctor should not use the numbers but go by but use the patient experience to adjust medicine accordingly. Someone who has no thyroid needs somewhere a dose around their weight. I know people say this is not true but I weigh 125 and that is what I take, 125 mcg.
6. Fluoride, whole grains and minerals will lower your absorption of the Levothyroxine and this is no light matter. That is why a higher dose is necessary and then I have more control over adjusting my foods and supplements to make things feel better.
I hope these things I learned will help you find your best balance. Also I do not take T3 but keep my medicine supplement as simple as possible. This helps me know what I am dealing with. The body makes T4 and does this conversion in the gut flora even if you have a working thyroid so it makes sense to supplement that way.
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Am I undermedicated? What should my next steps be?
Please can I have some advice on these test results? 
Am I overmedicated? Advice sought please
Convinced I have Hypothyroidism, labs say no?
Feeling of dread and despair 
