I had a phone appointment with my GP today.I asked again about a increase in my levothyroxine, as I'm still having very bad fatigue and brain fog.
My gp said to increase my levothyroxine could put me at risk of heart conditions, is this correct?
She's saying my thyroid could become overactive and put me at risk.
I had overactive thyroid 40 years ago and was on carbimozole for about 4 years.
if FT4 & FT3 are above range for a prolonged time you can develop health issues including heart issues.
Is GP looking at full thyroid function?
I have booked a blood test for next week I have asked for full thyroid function but once again she's saying TSH is enough, I had a private blood test in July so I think I will book another private one.
Your last bloods four months ago from Monitor My Health showed T4 @ 51% and T3 only 29%.Are you still on same dose?
Yes 100mg accord levothyroxine, my GP has been refusing for over 6 months to increase it, they just say it can cause heart issues if it's increased, they say TSH is in range, feel like I'm going crazy
Unfortunately many GP's just look ( and test) TSH, they ignore FT4, FT3 and any symptoms you have. Its the erroneous way they are taught in training. Could you see a different GP?
Tried that my practise have a few doctors everyone is saying no increase.
Your GP needs to go back to school+get some retraining!Grrrr!! Talking twaddle when it comes to your T4/T3 results! Personally I'd get a thyroid UKs list of private Endo's+see if they will help you ! It's what I had to do as my GP said T3 irrelevant! Wrong, wrong, wrong! Don't let their ignorance keep you unwell!
That’s exactly what my dr has told me ,in fact I’ve just had a letter telling me they were putting my thyroxine down by 25 as I’m over medicated,which. I’m not I thought it was an agreement between the dr and you about changing dose
Yes it should in agreement with you, there should at least be a discussion. NICE guidelines are on your side:
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “
Thankyou for that , I know she won’t be satisfied because my tsh has always been low 0.02 and that was just on t4 so now I’m taking t3 it’s going to be lower so what’s she going to do just keep lowering it ,
Madness
How much are you taking?
You can refuse their dictats! GP lowered my levo by 25mchg+I was so unwell. It's yr body they're messing with but you know your body +how you feel better than anyone. Don't be bullied into submission!! Stand yr ground!
Well they provide me with 150 but I added an extra 25 as they wouldn’t they keep saying I’m overactive but I’m not they just go on my tsh I also take t3 but neither t4 or t3 are over , thankyou for your reply
My TSH has been suppressed for years, no tremors, steady pulse, but GPs@health get hysterical about suppressed TSH as they don't understand much about the issues involved! On 150 levo, my TSH didn't rise but it made me so unwell! At my long term GP surgery (before we moved house in new area) my GP there only went by my T4+ignored my TSH!! Wow, a Dr with sense!! 😄
Well what happened I was doing a trial of t3 which was upside down ran out at least 3 times then he said stop them go back to the200 you had been on but the drs never put me back up so what was I supposed to do just go further down that’s when I started to look for my own t3 , I don’t know why they don’t take any notice of t3 i mean why is it there then
You do what is necessary to be well!! And keep a stash!!😁
If reading your previous posts correctly you are taking 100mcg levo daily?Is there another doctor you could see at your surgery?I wouldn’t be leaving the building until a 25mcg increase was agreed.Your conversion is coming in at 4 which is good but your just not getting enough of it.
I have spoken to 3 or 4 different doctors over the last 6 - 8 months, they all say the same, they have put on my nhs records that I increased it myself which I did but ran out of levothyroxine and had to ask for extra ones.I'm saving up to see a private consultation but that might not be until the new year now.
I have asked my GP to refer me but they say no they won't.
Thank you for your replies
Hey there again :
You write 40 odd years ago you were on Carbimazole for 4 years due to having been diagnosed with an overactive thyroid -
what happened next - did you have RAI thyroid ablation, a thyroidectomy or did your thyroid reset itself without the need for any drugs ?
Were you diagnosed with Graves Disease - as this is a Auto Immune disease and the TSH a very unreliable measure of anything and must not be used to dose or monitor patients on -
though fully accept in primary care a TSH is all you are likely to get tested and why many of us on this forum have resorted to doing Private Blood tests and frequently self medicate in order to feel as well as we can to carry on living our lives.
i think I sent you this link previously - though it was a year ago - elaine-moore.com
You had so much going on last year - just hope you find yourself in something of a different place - though trying to get optimal thyroid care is especially challenging and another layer of stress patients do not need.
My thyroid must have reset itself, I was in my 20s, I had a miscarriage and felt so unwell afterwards, two months later I was back at the GP because my balance wasn't right, I was told to get my ears syringed, while having this done I was talking to the nurse and she said its not your ears go back to the doctor, I saw another doctor who said put your hands out and my hands were shaking he said need blood tests, it was about a 3 week wait for results back then, it came back my thyroid was very overactive, I'd lost a lot of weight, I was started ona high does of medication, I would have regular blood tests and my medical as reduced over 4 years until I wasn't on any.Back then, in my 20s, I didn't ask many questions to my doctor.
I often wonder if the miscarriage triggered something to unbalance my thyroid .
Ok then, yes, most likely - apart from the obvious - a lump, swelling, difficulty breathing, or a goitre - there are 2 main reasons for the thyroid to malfunction - both Auto Immune diseases - and only Graves should be managed with Carbimazole - the Anti Thyroid drug.
Either way this traumatic episode likely triggered an immune system response and whether you have Graves or not - you became hypothyroid - and needing thyroid hormone replacement - and once hypothyroid I very much doubt you can, all of a sudden -flip your thyroid into hyperthyroidism.
We generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70^ through its range.
In July your T4 was at around just 51% with your T3 tracking behind at around 30% -
A too low a level of T3 to function on can also cause heart conditions - just as too high a level of T3 can cause health issues - and that is why we need to measure the T3 / T4 and adjust doses to alleviate symptoms -
Your results are well inside both the T3/ T4 ranges and your doctor being alarmist :
With this slowed metabolism your body will be struggling to extract key nutrients through your food and we need a strong core strength of ferritin, folate, B12 and vitamin D in order to convert and utilise any thyroid hormone replacement.
I now aim to maintain ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500 ++ ) and vitamin D ar around 125.
Looking back I see you wrote a post regarding NDT - I doubt you will get this prescribed on the NHS - but you might get T3 prescribed - so if you are hitting your head against that brick wall - maybe asked to be referred to endocrinology as clearly your surgery have no one there who understands how to treat hypothyroidism and alleviate the patients symptoms without causing more health issues.
Getting T3 prescribed on the NHS has become something of a postcode lottery - with various ICB areas choosing to ignore the current guidelines -
If you go into openprescribing.net you have a window into how supportive your surgery is compared to other surgeries in your area - in prescribing T3 - just enter Liothyronine as the drug you want to look at -
and similarly with ICB areas - what we aren't able to establish - is how ' new patients to T3 - are ' seen ' - acknowledged or ignored - all you can do is compare the numbers and we aren't able to see which doctors within a group practice are more 'able ' than others !!
If yr GPs are so ignorant re thyroid issues (and many are), it may be worth contacting Roseway Labs+getting an appt with them (about £50) as they can prescribe. I get my T3 from them privately via private Endo +costs £60 for 200 20mcgs of T3. This way I avoid my GP surgery altogether other than for my Levo which Endo determines+writes to GP surgery. I believe a number of ppl on this forum use Roseway Labs to obtain the thyroid meds they desperately need!
Thank youWill this lab be able to yell.me what thyroid medication I need based on my latest blood tests?
I have a low resting heart rate averages 54 - 56 not sure if this is related to thyroid issues or not.
I understand you can make an appt (Wednesday's I believe they're available) to discuss yr blood tests+yr GPs refusal to refer you to an Endo etc+they can prescribe T3 at least as well as other meds to support your journey to good health. Because theyre able to remove fillers etc for those who suffer from such, they're used by many sufferers. I take 15mcgs of T3 which I split into quarters with pill cutter so 200@£60 is well worth it for me. My private Endo provides my prescription to Roseway Labs. If you choose to go down the private route re a private Endo, your GP cannot refuse you a referral letter to the Endo you choose. My Private only Endo is based in Oxford, I'm in NW England but can have zoom or tel appt following fresh blood tests! I've seen him in person once+the rest by phone. The T3 has been a game changer for me as I don't convert T4 to T3 well at all! My GP said T3 irrelevant so that made my mind up to go private!! Most GPs haven't got a clue!!! Do let me know how you get on! You can't put a price on feeling well as opposed to feeling rubbish!!
Thank youI have found a endocrinologist in Birmingham, that's near me and have just sent a email to them.
I will contact the riseway lab as soon as I get my private blood test results hopefully within the week.
Give GP copy of private test results
Including a note on Ft4 and Ft3 working out the percentage through range of each result
Many people when adequately treated will have Ft4 at least 70% through range and Ft3 at least 60%
How much do you weigh in kilo
Guidelines on dose by weight is approximately 1.6mcg per kilo of your weight per day
For GOOD conversion of Ft4 (levothyroxine) to Ft3 we MUST maintain GOOD vitamin levels
Exactly what vitamin supplements are you now taking
Vitamin D and folate on low side last test
Look at increasing iron rich foods to improve ferritin
I weigh 80 kilo now ( I have gained 10 Kilo in about 9 months)Vitamins I'm taking are:
B complex
Vitamin D+ K2 (oral spray)
Magnesium spray (direct on skin)
Extra folate every other day and when stopping B complex before blood tests.
I'm back on my hrt patches
I have given my GP my private blood test results but not given through range.
I have been diagnosed with gallstones after 2 years of waiting and am being referred to a consultant.
Thyroxine replacement should be at least 1.6 mcg per kg. This is clearly outlined in the NICE guidance:
cks.nice.org.uk/topics/hypo....
So if you weigh 80 kg (and this is the result of your under-treatment, as your metabolism is slowed down), your thyroxine replacement should be 1.6x80 = 128 mcg, rounded to the nearest 25mcg - so your dose should be 125 mcg per day.
I would put this guidance in front of the GP and tell him that you are due an increase, as he is supposed to follow treatment guidelines that have been clearly outlined by NICE. If he still drags his incompetent feet, as a last resort you could put in a complaint, that the GP is clearly not following set out guidance, despite you having severe symptoms.
Thank-you My GP has not weighed me recently so I don't think they are following those guidelines.
I used to be able to control my weight, I'm active do at least 10,000 steps a day and 30 minutes of cardio bit seem fatigued, anxious, my head can't think clear.
Your weight has nothing to do with not getting enough exercise or eating a healthy diet. It is a metabolism problem, e.g., your body has not got enough fuel (hormones) to work efficiently, hence everything is slow and sluggish. How is your cholesterol level? If it is creeping up, this is also a sign that you are under-treated, as lipid (and glucose for that fact) metabolism is very closely linked to the amount of thyroid hormones. And if you have not got enough hormones to 'process' your lipids (or glucose), your cholesterol (or glucose) will rise! And as mentioned, it will only correct itself when on the right dose of thyroid hormones, as it is a metabolism problem and not a dietary one.
In the old days, higher glucose or cholesterol levels were recognised as a sign of hypothyroidism and patients were treated until theses were in the normal ranges again. These days it is treatment by TSH and you are 'good' if anywhere within that range, low T4 or low T3 - who cares?! Well the patient does, as they feel lousy - but that does not seem to be taken into account.
I really hope you can get this turned around, I keep my fingers crossed for you.
I have high cholesterol I'm not taking the stating the doctor gave me
Well statins are just a plaster, your high cholesterol is not caused through diet, it is caused through the lack of thyroid hormones! Someone should point that out as it is a well known fact! But that's what they do, oh lets dish out some statins instead of tackling the root cause 🤦♀️ . Sometimes I really despair with the medical profession...
It seems that your GPs have no clue whatsoever how to treat hypothyroid patients. Have you got the chance to perhaps change practices and see another GP? Might be worth travelling a bit if you can to see someone that is more clued up or at least prepared to listen to patients?
I have given my GP my private blood test results but not given through range.
You need to emphasise how low through range your Ft4 and Ft3 are
Weight at 80kg suggests dose around 125mcg daily
High cholesterol directly linked to low Ft3
Gallstones also far more common in hypothyroid patients
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
My gp said to increase my levothyroxine could put me at risk of heart conditions, is this correct?
You might find this link of interest :
healthunlocked.com/thyroidu...
It tells you how many deaths associated with taking thyroid hormones (Levo, T3, and NDT) there have been since first recorded in 1967 up until this year. (The numbers are tiny!)
Some articles that are worth reading :
ahajournals.org/doi/10.1161...
ahajournals.org/doi/full/10...
And don't worry about risk calculators. They over-estimate risk of cardiovascular disease by 400 - 500%.
a 'low but not supressed' TSH when on levo has no greater risks than TSH 'in range' does ,,, the evidence for this is clearly shown the first study in this post : healthunlocked.com/thyroidu...
the study found no increased risks as long as TSH is over 0.04..... your TSH is currently well above this level and a small increase in levo is highly unlikely to lower your TSH below range let alone below 0.04
your GP's are being alarmist.
if they tried a small dose increase and it proved to be more than you needed, it would result in 'overmedication' which is not the same thing as your thyroid becoming 'overactive' again. Overmedication can be fixed easily and quickly by simply adjusting levo dose (unlike overactive thyroid which can't)
try showing your GP's some of the references from that post... they clearly need to read more.
~~~~~~~~~~~~~~~~~~~~~~~~~~
also try showing them some of these references : (they all recommend GP's keep TSH between about 0.4/0.5 and 2/2.5 ....ok yours is already within that range , but there is clearly not a problem with having TSH as low as 0.4/0.5 if necessary to control symptoms : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range
Thank you I have spoken to a different doctor this morning and was asked I'd I had gone through the menopause, I replied I had but 3 .months ago went back onto HRT patches to see if that would help my symptons , it hasn't so she said its not your thyroid you need stronger HRT patches as the ones im on arnt giving me enough hormone replacement. 🙄
she said its not your thyroid you need stronger HRT patches as the ones im on arnt giving me enough hormone replacement......
is this based on anything scientific ,like testing your estrogen etc ? .... i think i know the answer.... give me strength 
so they are happy to dole out increases in hormone replacement,,,, but not the one you quite reasonably asked for. How do they expect us to take them seriously when they display such absence of logic ?
GP appointment
GP appointment
Update following long-awaited GP appointment for results of Thyroid blood test
