I was diagnosed as under active in Dec 2021 I was put on 25mg of Levothyroxine I am 52
I have been suffering tiredness and aches and pains in my arms and legs and hair coming out in droves.
I asked for an increase in medication each time I talk to a Dr and they all say no, I said about the NICE guidelines on calculating the dosage and they still say no and this time he basically said if anything he would take me off meds as he wouldn’t have jumped into prescribing Levothyroxine even though I have been low since 2014.
I was found to be Vit D deficient and now B12 and folate deficient I am a meat eater by the way serum B12 403ng/L [187.0_883.0] Serum folate 2.9ug/L [3.1-883.0]
TheDr said just get a cheap multi vitamin I asked for my test results turned up and they only gave me my latest results so I will have to ask for my previous ones again.
Serum TSH level 2.7mu/L (0.4-4.9) that’s all on my thyroid that was tested I am not allowed another blood test till January any advise for me would be appreciated
well I have had an update I spent several hours last night watching the seminar from when the NICE guidelines were released its on YouTube as I had an appointment this afternoon to discuss my menopause on the phone again. I took several pieces of advise from many of you firstly I was more determined I decided to go and ask for a trial increase I stated the guidelines with mg versus Kg for the meds and said about treating the person and not the numbers on the screen he agreed with that but was very reluctant he said he could get into trouble for it as it was the head Dr that fobbed me off last time and really it was going against him even though he was an independent GP. He looked up the guidelines whilst we were talking then he said OK we will try it but you will have to book in with me every 4 weeks and then test my bloods in 8 weeks as long as I feel OK so Thanks to everyone who contributed I really hope it does improve my symptoms and it isn’t the menopause 😜
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Holibobble
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Welcome to forum. You are being mistreated and another person who has been put on a starter dose for a child and left on it 2nd post I have seen this week. I too had this mistreatment and was made very ill. This is wrong.
You were right to flag the NHS guidelines on dosing. Your doctor is an incompetent to not even consider they just might have stuffed up. You need a different doctor. This one is not going to have an epiphany any time soon and his manner sounds controlling and abusive. Threatening to remove medication completely if you make a fuss.
I too was started on a child’s dose. Please take the time to read my profile. I wrote it for others who might need to see how to proceed. Being deferential is not one of them. Cool, dispassionate and with all your ducks in a row- embrace the telecon you can have all your notes in front of you and they can’t see you!
Be prepared to test privately to get the complete picture.
There are some very rogue, very ignorant, very incompetent doctors out there. There are some good ones - the ones who accept (if not admit) they don’t know it all and will take your lead and work with you if you get a handle on your own condition, the days of being a passive patient are over I’m afraid 😳.
But you are in the right place with some incredible people on this forum who I credit with saving my life. As a final note I am on 150 µg of levothyroxine and doing well - it can be done!
A great post Charlie. Are you aware that GPs won't even look at privately test results? I showed mine to my new GP last year and he didn't comment as there wasn't time. I showed my latest ones to the nurse practitioner and she told me that the doctors wouldn't consider results from a private testing organisation even if the laboratory was one used by the NHS. When they do ask for NHS tests to be done, they don't even advise us to get them done before 9 am and then only look at TSH.
Why do you not accept them doctor? What is the medical or scientific basis for that?
If it is policy, what is the basis for that? They will often respond with we can’t be sure of their methods and this or that.
You then show them it is an NHS lab. They cannot keep contesting for no reason.
It’s a bit like when you get “the manager will tell you the same thing”, very often the manager does not tell you the same thing.
I changed surgery the moment I was told very boldly by a doctor that she won’t give me a trial of Levo no matter what evidence I will show her or no matter what the NICE guidelines say.
Negligent at best.
She had that boldness despite me being 27 and completely unable to live my life.. at 27!!!!!!!
I fancy a huge amount of policy has much to do with saving money and little to do with wellness, though they pop up snappy posters encouraging us to go to them with any concerns.
I guess you have many years of study as a patient behind you and have gained the support and admiration of your GP. Well deserved. I, on the other hand, have yet to even be diagnosed and if I started to throw my weight around when I'm only a newby, I don't think it would get me very far. When I presented private results to my GP he didn't take much notice, but it was the practice nurse who actually refused to take the copy of my results and said that the doctors wouldn't take any notice. I replied that the tests were done in an NHS hospital laboratory and she was adamant that it would make no difference. She may not be right.
I'm due to do a surgery-requested test in ten days time, requesting B12 + Folates; Bone profile; Free T3 (YAY!); Free T4: HbA1C; LFT'S; FBC; TSH; U+E and Vit D. I am going at 8.30 am, having fasted overnight, with just water. At least I get my results online, often later the same day as the test, and as usual, will post them here and see how it goes but it won't be the same lab as the Monitor My Health, so I don't know how any comparison can be made or whether it would even be worth trying.
I was left grossly inadequately treated 20 plus years…..but at least with sky high antibodies and TSH of 7 …..I was diagnosed 26-7 years ago with Hashimoto’s
only made progress when joined the forum in 2015/6
I' m so sorry to hear the number of years you must have been suffering without having been diagnosed. I would think you have plenty of confidence to tell doctors what's what, since they owe you respect for all you have gone through and how you have taken charge of your own health. At 77, I consider myself symptomless, so will not have the same clout if I am ever correctly diagnosed. You deserve a medal, especially for all the knowledge you share on a daily basis on HU. Thank you.
I had my annual review today. I received a phone call from the surgery pharmacist (this is something new), and as I am undiagnosed, the question of blood tests didn't arise.
I walked my GPS through my results over the phone. They were uncomfortably out of their zone. They don’t know/have not been taught to compare. I have explained my results are from a certified lab, superior to NHS tests and if they want to compare the meagre offerings from a bald NHS test to the plethora of good solid info on a private test, converting results to percentages within range makes them comparable and is a perfectly legitimate way to do so.
They get a written report before we speak so they can prepare - I’m awful I know but this is my health and I take no prisoners! 😂👍
I'm so sorry your GPs are ignorant. If you have tried all the Gps at that practice then I would encourage you to get a recommendation from a friend and move practice. Leaving you on 25mcgs for this length of time is appalling.
Other things that could help in the mean time:
What happened about the b12 deficiency? Your numbers there don't look too bad but I'm not an expert.
Start supplementing the vitamins that you know are low once it's decided you definitely aren't B12 deficient. Many here use Thorne basic B complex.
Where is your ferritin result? Get you GP surgery to print them out and post here.
You really need to take charge here, else you will forever languish on 25mcgs Levo and be in terrible shape. I know it will take everything you've got to do that. Get your partner or a relative to help and support you if possible but it's down to you, and you alone to sort this. People here can advise what your next step is. It really shouldn't be like this but here we are.
I'm sure you are trying your hardest and obviously its very upsetting if they aren't doing what is necessary here. They aren't listening to you. I was at a similar point years ago, although on 125mcgs levo and my GP told me I was taking enough, that was it. Eventually I saw a different GP same practice and they put me up to 150mcgs.
You could try contacting the practice manager with NICE guidelines and make a complaint. Either that or change GP surgery and find a helpful GP, which do actually exist, just they aren't everywhere. You have my sympathy.
I know how difficult it can be when your GP won't listen or try to understand how unwell you feel. It is very upsetting.
I've found writing to my surgery has got better results, keeping the letter brief and polite outlining what the issues are, what you'd like them to do and refer to any supporting NICE guidelines or other research. Also provide a copy of the letter for the practice manager.
Holibobble get a person to go with you who is not deferential. It is essential they will back you in a strong controlled way. A well meaning deferential person will undermine you yet further. Be careful who you pick- my hubby was brilliant, but I have friends I know would have got in there and started doffing their caps and been no use to me. Nice is not the essential quality (though hubby is nice he does a brilliant withering stare).
I have only had phone appointments so far so it’s pretty difficult,I have another one tomorrow but that’s about being menopausal thinking maybe that’s adding to my tiredness
Even with the Telecon, it doesn’t hurt for them to know somebody else is listening in.
I was going through the menopause when I was diagnosed. Thankfully apart from a few hot flushes and being a bit teary it didn’t have a major impact on me the major impact with the hypothyroid symptoms which could quite easily have been passed off as being menopausal.
The fact I never raised menopause as an issue helped keep the focus I think for them. It was never even discussed. To be perfectly honest if I hadn’t had hot flushes, I would have barely realised it had happened I had so much on my plate at the time, my own health was an aside. Paying for that now! Should’ve realised! I can look back over my patient records and I can see symptoms going back 10 years for the hyperthyroidism.
I would say don't let them fob you off with HRT until you have sorted your Levo dose... they did that with me and I spent another 18 months undermedicated, like Charlie-Farley says the symptoms overlap but get your thyroid needs sorted first... if you do then add in HRT (which is great but can be a whole other struggle to get the right stuff) you might well find you need to increase your Levo a little more as Estrogen is a bit of a blocker.
I would work on one thing at a time so you get a real feel for the ups and downs of both
Your ferritin is very high, 73 ng/mL above the normal range. This likely indicates inflammation or even haemochromatosis (a genetic condition that causes iron overload). Please leave your current surgery, find a GP who is competent, and among your thyroid concerns please flag that you have very elevated ferritin levels that warrant further investigation.
But hypothyroidism causes issues with absorption no? Before I added T3, I never saw my ferritin go above 55 even when I took 420mg a day for months! Multivitamins only contain about 14mg of iron, and the fact they're multi affects the bioavailability of the iron making it even harder to absorb. Obviously OP isn't me and maybe it's different in post-menopausal women but I was shocked to see such a high ferritin level!
I only have started multivitamins 2 weeks ago and didn’t take them at the time of this blood test I feel like I do have inflammation in my body as I have lots of aches and pains in my body and joins but the other tests they said did not have anything I thought I might have something I am wondering about Lupus as I have a butterfly rash across my face mainly at night though
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
I printed out the nice guidelines and worked out with my weight I should ne on 125mg but all 3 GPs have refused saying that’s not how it works. My vitamin D levels were not given to me but I was put on a high does for 6 weeks then told to buy an over the counter one to keep it topped up
That looks high. But, just testing ferritin isn't good, you also need tests for inflammation levels, because high levels of inflammation will falsely raise the ferritin level. A test like CRP is needed.
Don't ask your doctor for your results, he would probably rather you didn't know, in case you start arguing or asking questions he can't answer! Ask at reception for a print-out of whatever you want. It is your legal right to have one.
I have got one blood results it is a full one what would CRP come under ? Is it the creative protein level because if it is I have it as above range at 6mg (0.0-5.0)
And, then again, it might not. It's a multi-vit. Holibobble what multi are you taking? What are the ingredients? And, how far apart were the CRP test and the ferritin test that gave these results?
I have got one blood results it is a full one what would CRP come under ? Is it the creative protein level because if it is I have it as above range at 6mg (0.0-5.0)
I asked for my test results turned up and they only gave me my latest results so I will have to ask for my previous ones again.
You are legally entitled to printed copies of ALL of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
This is the second person who has posted having been left on a CHILD’S starter dose for months, in a week that I have seen! Are theses cases in a specific area or spread - appreciate can’t share personal data in the forum but this may warrant further investigation. It is just appalling. It was what happened to me also. Thanks to you guys I’m well.
I think it’s about time there was a petition for all GP Surgeries to have at least a Nurse or GP who is conversant in thyroid disorders. Most surgeries have a diabetic nurse or GP who specialises in diabetes so why not thyroid, after all, there are more patients on thyroid meds than diabetics.
I was started on 25mcg bloods tested after 3 months, told normal and retest in 12 months. It’s absolutely criminal what’s going on out there, life limiting symptoms and treatment withheld. I had a massive (and stressful) battle to get up to 50mcg but I got there with NICE guidelines and advice here and easy phone call to get to 75mcg. Just starting on request to 100mcg. So it continues 🦋💚🦋
Well done for advocating for yourself - there are so many hypos who believe everything their GP/Endo tells them. Unfortunately, I was one of those people. I didn’t question them and only found ThyroidUK and this forum after the damage had been done 🤬
I was started on 25mcg (and GP expected to leave me on it for life, thought I must have cancer if I needed any more). 3 GP's I have seen have all said, 25mcg is The Starting Dose and that those are the guidelines they are working from. (The only guidelines I've seen which say 25mcg are if you are over 50 and known to have heart problems, and nobody checked my heart before starting it!)
you need to print off latest guidelines for them - idiots doesn’t Even begin to describe- terribly arrogant as well. One GP nearly pooped herself when I told her I was a doctor (science not medicine). They think we are all intellectually sub-normal. There are a hell of a lot of very intelligent people out there and some (like me) who might not be but have letters after their names. 😉
Love this - my title is also Dr, it's one of the first questions they always ask, 'are you a medical doctor'? You can see the huge sigh of relief when I say no. It makes them feel safer momentarily but then when you wheel the brain out, oh dear... (have to admit this is tricky with brain fog, but still possible). I had one GP who was so pleased I was informed and knew what I wanted. But she left facing next argument in a few weeks to actually get up to a bodyweight dose... wonder if they know such a thing exists?!
I feel, as others have said in a few places, it's deference that can be an issue. Because I'm not intimidated it doesn't concern me to argue (once I know my facts), & I find the concept of someone else having the power to keep me sick frankly horrifying.
The one thing each GP could no understand was whilst I was ‘in range’ I was still symptomatic and not ‘normal’. They think all they have to do is drop kick you somewhere between the upper and lower range and think it’s good, nay better, if you are safely in the middle. If they but had a clue 🙄.
I have successfully argued that there is room in the range to accommodate another dose increase and be closer to the guide dose the NHS provides in their guidelines. I’ve also given them a couple good references to chew on and one is doctor Toft transcript which can be obtained through admin at thyroid UK. And de-bunk (predictive 🙄) the idea TSH is the most important measure. I overloaded them with info all relevant should they care to digest it.
Yep it’s amazing though to realise how easy it is to get ahead of them and yet still not know much 😂👍
You are so right! I think we were once all considerably cleverer only to be dumbed down by our failing thyroids and left in a foggy under medicated world which is so hard to fight your way out of when under functioning
My brain kicked back in at 50 ug of levo and then I mercilessly harangued the doctors as each dose wore off. I got from 50 to150 in 25 ug increments in 8 months - it was a see-saw of ‘oh no I’m getting symptomatic’ to dose increase kicking in feeling good for a few weeks then dropping back. The last dose increase I just knew would sort me as each previous increase had meant I was not quite as bad as the previous time when the increase effect started to go.
I stayed very tuned to my symptoms and recorded significant symptoms or improvement on a month to view (importantly not daily) this I could compare to dose increases and blood results and look at everything in the round.
There were patterns and being able to include this detail was helpful.
Hi I know how you feel, been on 25mcg for many years- tried writing to Gp, eventually got a face to face with a locum very condescending, just repeated himself ‘you are in range’ Its a battle I am losing, trying to summon courage and strength to try again!! I am with you in this battle!! Take care
When I was in this situation I just increased my dose and told them I had.... they then increased my prescription.... it is such a ridiculous game we have to play 😡
Often the overlap in prescriptions leaves you with a little wiggle room to experiment 😬
Same, problem is in that horrible bit where you need more but have to return the appropriate blood scores...hoping so much for a time I can get to A Functioning Dose and keep away from them all for a year...
I flagged I had been mismanaged and a few salient entries disappeared on my patient access . However unbeknown to them I had already taken screenshots. They play dangerous games. I get print outs all the time now. Untrustworthy.
just for the record Levothyroxine and others are not medications, they are a hormone replacement. Your doctor enjoyed wielding his power rather remembering ‘first do no harm’. Change your doctor 🤔
Changing doctors not an option here where I live, 1 surgery in our town- yes different drs but they stick together! Not allowed to be with another surgery in next town!
well I have had an update I spent several hours last night watching the seminar from when the NICE guidelines were released its on YouTube as I had an appointment this afternoon to discuss my menopause on the phone again. I took several pieces of advise from many of you firstly I was more determined I decided to go and ask for a trial increase I stated the guidelines with mg versus Kg for the meds and said about treating the person and not the numbers on the screen he agreed with that but was very reluctant he said he could get into trouble for it as it was the head Dr that fobbed me off last time and really it was going against him even though he was an independent GP. He looked up the guidelines whilst we were talking then he said OK we will try it but you will have to book in with me every 4 weeks and then test my bloods in 8 weeks as long as I feel OK so Thanks to everyone who contributed I really hope it does improve my symptoms and it isn’t the menopause 😜
Keep the pressure on GP - tell him if he fails you it will be his ass on the line not the bossy one who wouldn’t give you a dose increase. He needs to give his head a wobble. So weak and ineffectual 🙄
I think I get different brands from boots Mecucre pharma but I tend to throw out the boxes but I’m collecting my prescription over the weekend so can post what they are he would only give me 2 extra months of 25 and just said to take 2 each day I think he’s just getting around the increase as if I lost the prescription he definitely didn’t want to give me 50 mg dose separately
my Drs did this too, I’m on 3x25mcg tablets a day. It works quite well so you can increase slowly like every other day for a week and that helps not ease into the next dose.
Suggest you start adding vitamin B complex rather than folic acid or folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) . This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
I was taking vit D 25pg (high strength on bottle Morrisons) was the same as expensive ones but switched to a complete women by boots after the GP said switch to a multi vitamin
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facing next argument in a few weeks to actually get up to a bodyweight dose... wonder if they know such a thing exists?!
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