Asking this beautiful community because I feel fobbed off
I‘ve got an underactive thyroid and my GPs seem reluctant to adjust my dose. A fee years ago my TSH was just under 1 and it‘s been steadily going up. I can feel the fatigue and exhaustion and although it‘s been steadily moving up my GP claim that it is within normal range which is 4 and below. I find this to be false because when the condition is 'managed‘ I was told by my previous doctor in Germany who is fab that it should stay under 2. He also stated that seeing how it is increasingly getting worse my medication should be adjusted. However, my GPs here constantly tell me it‘s fine. I also have PCOS and really struggle with weight and my hormones. All I get told is to eat less and healthier even though they know I had eating disorders in the past and a private nutritionist at the time confirmed that I am in fact eating too little.
Even during my pregnancy my GP never bothered to manage it even though it‘s a known fact that it gets worse during pregnancy. My midwifes even contacted the GP but never responded to them or me so it was never checked throughout apart from when the hospital did a check at 12 weeks.
Any advice?
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Affipop
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Sorry to hear that you're having such a difficult time getting the support you need, the fatigue can be so very debilitating and you are definitely not alone with this issue. There are many more knowledgeable than I on this forum when it comes to interpreting test results but one thing that would be helpful to know is when this test was taken - in particular, what time of day and how long after the last dose of T4/T3 - because it can make quite a difference to the free Ts (although not TSH so much, which definitely looks suboptimal to my eyes too).
Thank you so much for replying! I done the blood test 10/05 and got my results today. I did it in the morning so lets say 8/9am. I hadn‘t taken my medication yet, but I never forget my medication and have been vigorously taking it since I was diagnosed 2012/13 (can‘t remember the exact date).
That sounds about right, the recommendations on here are always to do the test before 9am at the latest. Doing the test a little earlier, say 7-7:30, may capture the increased TSH level even more clearly because the daily TSH cycle is at a higher point earlier in the morning - if you have the option to do that. It's so frustrating when doctors refer rigidly to the entire TSH reference range when making clinical decisions, even where there's a history of stable symptoms and TSH level specific to the individual. Do you think there'd be any value in seeing another GP to get a second opinion?
Do you keep a record of your results. Very important to have a record of test results, our dose of meds at time of test, how we feel on that dose, etc.
So if you have a record and you felt well when TSH was XX and FT4 was YY you can then show this to your GP and say
"ZZ dose of meds gave me these results and I felt well. Now my TSH has gone up to xx , my FT4 has gone down to yy and I am getting hypothyroid symptoms back. Regardless of the fact that these results are within range, they are not optimal results for me and I believe the aim of treating hypothyroidism is to relieve symptoms. I'd like to have an increase in my dose to get my levels back to where they were when I felt well".
You get the gist!
To support this you can use the following information:
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
That is precisely what I told my doctor. I do keep my results. I‘ve been on L-Thyroxin 75 for 8 years now. It stayed stable for 3-4 years but started dropping 2018/19. I kept mentioning this and the fact that I‘m gaining weight, my mood is all over the place, I‘m extremely fatigued and exhausted, struggling to work, but all I heard was:‘ It‘s under 4 which means it‘s fine and nothing we can do‘It had gone from 0.8 to the results that you see now.
I called them sobbing because I feel like I‘m neglecting my child. I fell asleep whilst playing with him. Luckily he was in a playpen but I’d hate to think what could have happened if he wasn’t.
Last time I fell asleep mid doing something was when my endo decided that my thyroid might be going through a 'phase‘ as my thyroid on the ultrasound didn‘t look like how a 'typical’ underactive thyroid would look like. He then took me off my meds just to see what would happen and I had to fight to get my meds again. My thyroid got so bad they had to up the dose from 50 to 75 after his little experiment. After that it was stable for a few years as I said.
I‘m just really worried and unsure as to what I can say or do to get them to help me
How unprofessional. Some Drs see patients as nothing more than specimens to poke about. Had my share of that too. I hope you get sorted. You're not asking for the moon, but a small increase to help your symptoms. He's wrong to say under 4 is OK, only for someone not already on levo. Even the surgery pharmacist told me the guidelines say to get it under 2 so your Dr isn't even following the medical guidance they're given. Stick to your guns, hard I know when you're not well, but you are right to keep at them. See another GP or ask for a second opinion.
Hi Lulu2607❤️This as just recently happened to me but my story is.. No thyroid, struggled with T4 ( fillers 😠) endo put me on T3 my thyroid hormones were going in the right direction, then in 2020 felt unwell, but these were symptoms of wanting to urinate constantly, server thirst, bone pain, bone vibration, anyway got a diagnosis of primary hyperparathiyroidism endo is dragging his feet on this, he has now discharged me on one normal blood test😠 so gp insists my symptoms are due to my t3🤔 so with the endos help decrease my meds.. My range before the decrease were.. T3 6.6..TSH.. 0.05) on 40mg fine I thought but endo had the knee jerk reaction to my TSH at 0.05🙄 I HAVE NO THYROID ENDO!!! So this is OK.. So after the decrease to 30mg my results..TSH..23.47..T3 1.5..T4..2.50..very hypo now😠😠.. What makes me so, so angry is endo and GPS make up stuff as they go along regarding ranges because my TSH was 0.05..out of their range 🙄.. The gp /endo took charge and decreased me.. But when my calcium went out of range at 2.67 ( ranges.. 2.10..2.60)the gp said.. "HO DON'T WORRY ITS ONLY MILDLY ELEVATED" and didn't even bother, so they play with our health when it suits, I just wish more would go with our symptoms and stop thinking just because our labs show just in range doesn't mean we can't have symptoms 🙄.. I hope you continue to fight your corner.. 🥊🥊
I‘m so sorry to hear that! I am still shocked that it is 2022, most people have thyroid issues and we still get fobbed off. They‘re quick to take us off meds, but when we need it they have to contemplate it a million times over in order for them to come up with some lie to not give us the right dose in the end 😩 highly frustrating how they play with our health that can have catastrophic and dire consequences for us!
Yes it's 2022 it may as well be 1622 I don't know why the gps/endos just don't prescribe leeche's,😂 I feel the whole process of blood ranges are out dated, I often wonder when these ranges came to be? Surely we're all different 🤷♀️ to pigeon hole us is not the correct answer, goodness I nearly laughed out loud at my gp when I was trying to get my diagnosis of hyperthyroidism ( graves took over 12 months 🤦♀️) my gp who's grossly over weight and is a male said our thyroid hormones will be the same in that range 🤦♀️.. Believe me I've had so many quacks tell me some utter rubbish concerning thyroid conditions, the only real truth you get is on here.. 👍👍 Take care and fight on.. 🥊🌹🌹
Isn‘t that the truth! Lots seem to be outdated in this country. In Germany we never go by BMI but yet in this country it seems to be the holy grail of medical advice. My doctor in Germany always advised not to check BMI as it is unhealthy and unrealistic. Whereas here they constantly throw it in my face. 🤦🏽♀️
It‘s so sad that a massive community came together like this BECAUSE of the same issue. UK is not great when it comes to helping those with thyroid conditions and the symptoms that follow. In the same breath I am grateful because without this community I wouldn‘t be the wiser as the quacks 😂
It's really sad as the NHS was known as the best health care in the world... Now its like a 3rd world country health care system 😔😔 my surgery are still insisting on telephone consultations 🤦♀️only come to the surgery if you have an appointment, and you have to rely on the doctor to ring you bk to tell you if you warrant an appointment 🤦♀️it's stressful just ringing to try to see a doctor now😤😤😤
Oh I know! Even third world countries are better. I have a friend whose husband had a tumor. NHS said it would take a month minimum for consultation and a scan. They flew to the Philippines that day and went hospital as soon as they landed. Got diagnosed with having Stage 4 tumors and they performed surgery straight away. Luckily he survived but they said if she had waited just a week he would have been dead. When they came back to England the doctors just said oh yay well done you! 😂 Could you imagine?!I also have fatty tumors that aren‘t dangerous but had to go to Germany to get diagnosed. Three nurses checked me who said oh isn‘t that normal?! We all have lumps and bumps 🤦🏽♀️ They‘re right below each breast as well… The hilarious horror stories go on.
When I first came to the UK I loved the NHS. I thought it was brilliant but now we‘re nothing but a number.
Your appointment system sounds absolutely disgusting! How can they determine that without having seen or checked you through. I‘m sorry to hear the bs you have to go through 😩
You have all my sympathy, as someone who was in your position in regards to test results and I also have PCOS. Rubbish combo.
Can you change GP? I was able to talk sense into mine by sending them guidelines and referring them to articles that the fine folks here on the forum sent me.
I finally managed to get a 25mcg increase and it did wonders for my weight and energy levels. Finally felt normal again.
I‘m taking Levo Thyroxine 75 and yes alwaxs the same brand as I need the lactose free one. The generic lactose free brand seems to be Teva.
Test was done before 9am first thing in morning between 8-9am. Yes, last dose was 24h before.
Could you explain the percentage and through range to me? Sorry I‘m autistic and haven‘t heard of that before.
I take womens multivitamins, folic acid and additional b12 and vitamin D. Everything (vitamins and minerals) came back as normal. They have to check as I lost too much blood after birth, was on blood thinners and also needed extra iron because it was extremely low after the amount of blood loss
So you need to get GP to test vitamin D, folate, B12, iron and ferritin
Approx how much do you weigh in kilo
Guidelines on dose levothyroxine by weight can help you argue for dose increase in levothyroxine
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
They have to check as I lost too much blood after birth, was on blood thinners and also needed extra iron because it was extremely low after the amount of blood loss
Please add actual vitamin results and ranges
We need GOOD vitamin levels.
GP will say vitamin level is fine if it’s anywhere within range
I am so sorry to hear of your situation. Your GP sounds ignorant and frankly negligent not to even monitor you through your pregnancy. Is there someone else in the practise you can see or I would look at moving GP surgeries if you can. Seasidesuzie has given you excellant advice......but I fear if he wont listen to other medical proffessionals either you maybe wasting your breath. I would put your requests in writing stating why you need an increase and state you want your letter put on your medical record. Generally doctors dont like things in writing because if they dont act & you become ill they become liable. However I suspect your GP has already had instructions in writing from medical professionals? If so I fear you have little option but to change practises or make a formal complaint.
I, unfortunately, don‘t seem to have much luck with GPs as these are all different ones. I had one really great one years ago but I had to move and couldn‘t go to her anymore. My most recent GP advised me to get pregnant again to fix my pcos symptoms despite all the ongoing health issues… Ever since moving to the UK from Germany I‘ve had to fight for every and every single thing. It‘s so tiresome. Thank you so much for your advice! I actually haven‘t tried emailing them. I got an appointment next week and will give them the benefit of the doubt. If nothing comes of it I will email them and also do a formal complaint. Thanks again xx
I hope your appointment this time goes better. A polite but specific letter has worked for me in the past. It doesnt make you popular but I long ago decided that am not there to be friends but to get the best treatment for me. You are the one who lives with the consequences of no or poor treatment not the doctor. Always be very polite and calm so they cant accuse you of being aggressive giving them an excuse to throw you out of the practise.
I have no quarrel making enemies as I‘m not fussed whether they like me or not. I‘m there to get better and healthy. Had my fair share of GP fights because of this lol I start off the polite way, but sometimes you have to get a little rude to ensure your health and wellbeing. Especially when you know it’s deteriorating it can be such a scary place to be in. Plus (as bad as it sounds) because I‘m autistic I can get away with a lot of things-not that I want to use that as an excuse but sometimes desperate times call for desperate measures (never shouted or insulted anyone just politely threatened to take them to court 😅)
You could also put in a letter to the practice manager outlining your poor health care experiences and how poorly you've been treated. It's not acceptable. I had a lousy experience last year with my new GP. She was patronising and dismissive. My old GP whom I had for 30 years and who was really lovely, sadly retired.
I contacted the surgery and without going into detail as to why I wanted to change, requested my named GP was changed to a different one in the practice. I got an email this week and I've now got the nicest doctor there. I'm delighted.
You could Include a lot of what you've told us here. Point out TSH should be under 2, explain your symptoms and the rubbish care you got from this doctor during pregnancy. Be polite and non accusatory but firm. You need an increase in Levo. And quote the NICE guidelines on dosing. Good luck.
Hi Affipop. I agree with your German GP as will many on here. Your TSH should be under 2. I suppose if you weren't on levo already, or weren't having symptoms your results would be OK, but clearly, for you, this result should be lower and your Dr should agree a small increase to see if your symptoms improve ( they probably will). Thyroid is something of a master gland in the body so your other conditions could also be helped if they get your thyroid levels right. A decent Dr will agree to an increase due to your symptoms but as we all know on here it's a hard job finding an enlightened GP.
Thank you so much! I got an appointment for next werk Friday so best of luck in the hope that I will get it adjusted. Will update everyone then to see the outcome.
I‘ve noticed that my pcos symptoms are getting worse and I know that as you said thyroid is a master gland and when the thyroid is off balanced it is almost like a domino effect and my pcos symptoms seem to be amongst the first to show up. I did read that they can be linked. Will also discuss this with them to see if there is any help I can get towards that other than simply getting pregnant again 🤦🏽♀️
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