Since my heart attack on 2022 my levels have been all over the place. I am at my lowest of the lowest now. I can’t sleep hip and joint pain is unbearable and absoloutely knackered all the time. I saw my doctor on September 4th and my levels were at 4.9 and was told they are only just out of range and we wouldn’t increase for that amount. The cardiologist lowered me from 125mg to 100mg as went slightly over when I had the stents. 20 years at 125mg always felt fine.Blood test just come back results are Thyroid function test
Serum TSH level 6.10 mlU/L [0.35 - 4.5]; Patient stated to be on thyroxine.
Comment: TSH result suggests slightly inadequate
treatment or poor compliance. Ideally TSH should
be within the reference range.; Above high reference Serum free T4 level
Serum free T4 level 19.0 pmol/L [11.0 - 24.0]
Once again filed and no further action required. All they are bothered about is my cholesterol any advice please I just don’t know what to do.
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Fourwhitesheps
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Thank you I appreciate your reply I have got to the stage now that I am just so fed up with it all. Doctor mainly does telephone calls I just think she thinks I am an ongoing problem as haven’t been right in two years. 🩷
I can't help with your query but just wanted to let you know you are not on your own - my doctor is obsessed with my cholesterol, but completely ignores my exhaustion and other thyroid issues - unlike you I'm within the range, but not optimal. I've gave up going to them and just am trying to make sure all my vitamins are within range etc. Thinking of you and do hope you find a way out of this soon.XXX
GP's ( or Endo's) monitoring treatment for hypothyroidism with Levothyroxine should aim to adjust dose to keep TSH in the lower part of the range ie. 0.4 /0.5 to 2.0 / 2.5 . This is supported by several references , some of which were written specifically for GP's : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range
( note , one of these references also points out that raised cholesterol is a sign of undertreated hypo)
GP's ignoring an over range TSH is simply not acceptable in 'treated' patients, even the most basic NHS guidelines for treating/ monitoring hypothyroidism say that they should be aiming to keep the TSH within range.
"Tests for follow-up and monitoring of primary hypothyroidism
1.4.1
Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2
Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
Adults
1.4.3
For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.
1.4.4
Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine. nice.org.uk/guidance/ng145/...
A further thought , Fourwhitesheps.... GP may be reluctant to increase dose back to 125mcg because previous results were 'over' on that dose . (was it high fT4? , or low TSH ? )
... anyway, if their concern is that 125 would become 'too much' again, they could consider increasing initially to 112.5mcg (by using 100mcg / 125mcg alternate days , or half a 25mcg tablet daily)
for 2/3months then retest & make further decision based on how you feel then & blood levels.
(i find 12.5mcg is enough to have an impact on how feel, and it's good idea to adjust in small increments anyway , 112.5mcg may turn out to be enough )
also in case they are of use , this post and it's replies list a few papers relating to heart/ thyroid hormones :
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
Outrageous that you’ve been fobbed off like that. Seems to me there’s little proper medicine going on at the moment - just targets for this that and the other to be met. Anyway a tactic that I’ve found useful in the past is to email the surgery in advance of an appointment setting out exactly what my concerns are and what action I would like to be taken. If for any reason you are unable to email then consider hand delivering a letter. This will then go on your record and also provide a basis for discussion at your appointment.
Absolutely agree with what's been said by others. It's simply outrageous! I would do the following if it was me.
1. Book double app.....try for face to face but if not telephone.
2. Make sure you have someone with you or by the phone. Put the phone on speaker phone and tell the GP that you have x person there. It may help the GP to be more focused rather than fobbing you off.
3. After booking your appointment. Write an email for the attention of the practise manager and the doctor if known who you're booked in and write down your concerns in bullet points that you would like addressing.
Before sending the email get someone else to read it with you. Keep it factual and to the point. At the end of your email ask for it to be put on your medical record.
This should encourage them to take you more seriously.
You need information and to gen yourself up over hypothyroidism. Please try to read Living with your Thyroid by Barry Durrant Peatfield. Knowledge is power.
For example under treating you is also not a good idea as it will put stress on your body and your heart. Something many GPs don't think about. Under treatment is linked to a rising cholesterol and rising bp. Infact this is one of the ways they used to managed thyroid treatment before blood tests. Do point this all out to them!!
To be optimal you really need your TSH around the 1 mark and you need your Ft4 to be in in the top quarter of the range.
I can almost guarantee that you will become more knowledgeable than your GP as their training is not great on managing hypothyroidism. And the fact they're willing to ignore a TSH result like yours is evidence of this. I suspect they're using the guidance of not treating until over 10. But you are ON treatment and that is not correct. They need to get your TSH much lower.
TSH is a poor guide really but the nhs is emphatic it's what GPs should do......so go with it for the moment. Yours is so widely wrong!
Apologies for the length of reply but I hope this helps. You can do this. Fight for your health. Fight for an increase.
This is classic, normal, abysmal, ignorant, negligent, criminal behaviour by your GP. I know because I am treated the same. This behaviour absolutely infuriates me.
Every contact with medics seems to knock me back. I am under some delusion that their job is to help, be on my side and yet I continue (stupidly) to be disillusioned. In fact I would say my contacts now amount to PTSD. The run up to a long awaited appointment adds to my stress and then recovering from said useless appointment, also adds to my stress. I now understand why so many elderly people avoid any contact (if they can) with medics in any form. However there are others who love it/live on it. They seem oblivious to be seen as ‘heartsink’ patients. Unfortunately many hypo patients are ultra aware of this phenomenon and are desperately hurt and inconvenienced by the behaviour of medics.
You probably should be seen by an endocrinologist but honestly, in my experience that is not helpful either. None of them seem to understand the extra problems associated with hypothyroidism. It’s all too vague. It’s easy to treat hypothyroidism - isn’t it? You have heart problems - well we will hand you over to a cardiologist (woe betide if you ask for a referral). OK, cardiologist looks at their ‘to do’ list, (tick box) nothing individual in their recipe book either. Straightforward, everyone treated the same.
Oh I could go on. Some baby steps improvement for me. I managed to get them NOT to do stents on me because the outlook for my heart condition with stents is less than poor. However if I had not done the research myself the stents would have already be in place! Etc etc.
Just contact with them makes me terribly ill.
Whilst many patients do ‘apparently’ well on Levothyroxine alone and you may think yourself one of those and you could be correct. My record shows ‘Low T3 syndrome’. However my heart is apparently in such a bad state now, T3 cannot be prescribed. You just could not make it up. My heart is in this state because my condition went undiagnosed for years and then followed by poor thyroid treatment and no T3.
I am ‘training my cardiologist’ at the moment. She admits she leaves “endocrinology to the endocrinologists”. Pretty shocking, as research shows the connections to heart issues pretty starkly and have been known for generations. Unfortunately, like GPs and other specialists they seem unable to recognise the connections. It’s a shocking way to run a ‘so called’ health service.
You have got good advice everywhere in your replies. Step back just a bit. Look at what you might be able to do/introduce and go about it as methodically as you can. Give yourself a break. AND be aware of other hypos also feeling the way you do about the whole nonsense. Unfortunately you are not alone!
I would definitely follow up on recomendatiions as above including full thyroid panel & others as suggested. To add, I had low serum B12 blood level but in range. I had private Active B12 tests showing below range. It wasn’t until I pushed for further tests that GP did a homocysteine & mma test that were both very out of range, which showed B12 deficient.…I was heading for a stroke/heart attack. My grandfather died early sixties due to massive stroke. I also note stroke patients are given B12 during their recovery (sorry don’t have ref for that, but was on this site). Not sure about heart attack patients, but thought worth paying attention.
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Hi all. My recent blood results? Can I get some advice on these please 😊👉🏻
can someone please advise as what i should do now?
Another decrease in Levothyroxine 
Please advise
