Advice on new results please in preparation for completing e-consult

[Catch57]

Thank you for all the advice I have received previously. Unfortunately GP seems intent on ignoring my symptoms. Every time I complete an e-consult form requesting a medication review I am sent for another blood test and then hear nothing until I request results only to be told they are ‘normal’ and NFA required - and the symptoms I detailed are summarily dismissed. To say I am frustrated and annoyed is putting it mildly. I am on 25 mg of Levothyroxine and have been since diagnosis in December 2021. My symptoms persist and really do impact on my quality of life. I do not wish to spend what is left of my life sleeping on the sofa or being so tired, cold and foggy headed that I cannot function properly in social situations. Minor in comparison to many other conditions I know, but impact on my life and how I want to live it, is major on a daily basis. It’s quite depressing too, but am reluctant to say that to GP in case it distracts him/her toward a pharmaceutical route on that rather than dealing with thyroid. Sorry, that was a bit of a rant.

So I thought I would change tack and have private blood test before submitting e-consult and include results to head them off at the pass so to speak. The results are as follows. BT was 8.30 am, no meds for 24 hrs and fasting. Results as follows TSH 2.6 (0.27-4.2) Free T3 3.85 (3.1-6.8) Free Thyroxin 16.3 (12-22) Folate serum 8.84 (more than 3.89) Ferritin 29.9 (13-150) Vit B12 active 144 (37.5-150) Vit D 72 (50-200) thyroglobulin antibodies 12 (less than 115) Thyroid Peroxidase antibodies less than 9 (less than 34) .

While some have changed (my TSH was 4 in October and I was not offered dose increase) My Vit D has improved slightly - I am taking supplement drops daily - it was only 55 in August. Free T3 was 3.53 in August and Free thyroxine 14.7 so both have seen marginal improvement . The advisory from medichecks was about my ferritin level, they said it is below the NICE recommendation so seems I now need iron supplement too, but will take advice from GP, if I ever get to speak to or see one, before getting anything over the counter.

I have spent most of the day re reading advice from this forum and reading articles on links along with NICE guidelines and info from Thyroid UK, in order to marshal my thoughts and prep the e-consult form, which can only be completed and submitted when the surgery is open - so not until tomorrow at the earliest. My aim is to request an urgent medication review, include my recent BT results, summarise my research, especially that which states T4 should be at the upper limit of normal and that low TSH does not increase risk of coronary disease or fractures and quote NICE guidance 1.1.2 & 1.5.4.

Any other advice you very knowledgeable folk can offer will be greatly appreciated. Thank you in advance.

[Jaydee1507 Administrator]

Honestly half the battle with this condition is to learn how to use your GP surgery and it really shouldn't be like that.

Wasn't e consult introduced during the pandemic? I know it's still in use as my GP practice has it but I would only use it for administrative type things or if I was truly desperate and couldn't get hold of a GP. I would recommend making an actual appointment to discuss your dose increase where you can take along printed evidence of requiring a dose increase. Pick the most open minded GP that is at your surgery. Stand firm!

Indeed your ferritin falls below the NICE limit of 30 to qualify for deficiency. GP may want to run their own blood tests before hopefully prescribing.

B12 is good BUT folate better at 20. Suggest starting a good B complex that will keep all the B vitamins in balance. Look for methyl or active in the name. This one is good and has 90 days supply. amazon.co.uk/Liposomal-Soft...

Well done on starting work on your vit D. K2 should be taken along with vit D to help it go to the bones. Some D3+K2 comes in oil which helps it absorb better, or take it with an oily meal. This calculator will help you work out how much you need to take to get it to 100. grassrootshealth.net/projec...

[Catch57 in reply to Jaydee1507]

Jaydee - thanks . You are right that e-consult was introduced during lockdown, however, from experience I am more likely to get a response within 5 days from a GP using this route and would have to wait weeks for a face to face appointment. I would be happy with a telephone consult in the first instance . Ideally face to face so I can share my spreadsheet of results since October 2021. Vit D drop I take also contain Vit K - have some from nature provides - although I prefer the alternative which is 2 weeks in Barbados - not been back long and wish I had stayed there 😜 Thanks for the heads up about additional blood test re ferritin.

[Jaydee1507 Administrator in reply to Catch57]

Seeing as e consult hasn't done the trick for you in the past 18 months and your GP has left you languishing on a starter dose for that long, I thought a face to face appointment might well bring you more to their attention and get you heard. A few weeks wait for an appintment may well be worth it.

[Catch57 in reply to Jaydee1507]

You may well be right, but either way if they send me for another blood test after seeing a GP I know I will be ignored because the routine so far has been to send for blood test and ignore symptoms when test returns as 'normal' and all of this would take weeks. I thought by sending in recent blood results and requesting - or demanding- a medication review via e-consult I may get a quicker response rather than wait weeks for an appointment. I ordered the blood test when I was very low on energy and finding it hard to stay awake although this had improved slightly by the time I had the blood test. . My fallback it seek a second opinion privately with a complaint to the surgery for ignoring my symptoms and denying me appropriate treatment. Thanks

[Charlie-Farley]

Hi Catch57

You are on a starter dose for a child. My doctor did this to me and made me very ill. There is no rationale to keep you on such a low dose for such a long time. There is a guide in NICE about dosing by weight. Thing is if your TSH falls in range they think they don't have to do anything else. THEY ARE SO POORLY TRAINED.

TSH doesn't always correlate with Thyroid hormone status and if the doctor doesn't know what they are doing they will simply treat the lab work and leave you ill. There is a pinned post on useful bits in NICE and NHS guidelines I produced a few weeks ago and if you read my bio (I wrote it as a case study) you will see the misconceptions doctors have (hopefully) explained. You can get to all of it by clicking on my face - hope it helps.

[Catch57 in reply to Charlie-Farley]

Thanks Charlie-Farley - I have saved several of your previous posts and have used the links but the BNF info is also really helpful, thanks. Having read your bio so much of it chimes with me - not least that I have never received any information from the GP re my condition it was a patronising "here take these" and their box was ticked as job done!! infuriating . All the information and research docs I have read have come through this forum or Thyroid uk, so I am extremely grateful to you and others for sharing your experience and knowledge. thanks again.

[Charlie-Farley in reply to Catch57]

Welcome - My joy to give back to the forum, without which I might not be here today 🤗

[SlowDragon Administrator]

Request/insist on 25mcg dose increase in Levothyroxine

TSH is too high, FT3 rock bottom and Ft4 has plenty of room for dose increase

Having been left woefully under medicated you may initially need to increase slowly……25mcg and 50mcg alternate days

Before increasing to 50mcg daily

Retest again in 2-3 months after being on 50mcg daily

Which brand of Levothyroxine are you currently taking

Do you always get same brand Levothyroxine at each prescription

Meanwhile request full iron panel test for anaemia

Low vitamin levels, especially iron/ferritin directly linked to being hypothyroid

[Catch57 in reply to SlowDragon]

SlowDragon, thank you for your support and advice. I have been on Teva since December 21 however when I picked up my prescription recently it was MercuryPharma. To be honest I haven't found a great deal of difference between them - if anything I have been a little better this last week, although the previous 4 weeks had been hell - even when on holiday - was still on Teva then. I will add request for full iron panel to me e-consult, thanks, that's a good shout and hopefully ensures that point is not overlooked by GP. The clinical pharmacist has previously wanted to put me on statins for cholesterol but I refused on the basis that I would not consider anything until my thyroid dose was sorted and my symptoms were at the very least manageable and I could address my weight gain which is a factor in the cholesterol issue.

I also wondered if alternating dose would be a way forward but like your suggestion that this should be a way to increase until I find the optimum level. Thanks again for your advice.

[SlowDragon Administrator in reply to Catch57]

High cholesterol directly linked to being under medicated for thyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[SlowDragon Administrator in reply to Catch57]

my weight gain which is a factor

Levothyroxine doesn’t “top up” failing thyroid…….it replaces it

Most people eventually end up on roughly 1.6mcg Levo per kilo of their weight per day

Possibly slight reduction for age .,..but not necessarily

Approx how much do you weigh in kilo

Dose Levothyroxine should be increased as fast as tolerated in first year

Standard starter dose is 50mcg

But 25mcg is stater dose of over 65 years old

But dose still increases in 25mcg steps - retesting bloods 6-8 weeks after each increase

[Catch57 in reply to SlowDragon]

Thanks for reminder that Levothyroxine is replacement not top up. Afraid I don’t know my weight - stay off the scales - it’s too depressing - I know how tight my clothes are, that is enough for me. Thanks again.

[SlowDragon Administrator in reply to Catch57]

if you weigh around 9st 9lb that’s equal to 63 kilo

63kilo would likely be approximately 100mcg Levothyroxine per day

[Catch57 in reply to SlowDragon]

Thanks SlowDragon, that’s helpful. As much as I wish I were only 9st 9lb I know I’m considerably more than that but, that gives me a helpful marker in regard to dose.

[Charlie-Farley in reply to Catch57]

I know someone who's husband (a vet) has been permanently damaged by statins and she is in the process of trying to find out if he has an underactive thyroid. His situation could have been so much worse but for the fortunate visitation to the vet practice of another doctor they knew with his dog. He saw the vet dragging his legs finding it hard to walk said what on earth is going on and then he just said 'are you on statins? to which the vet vet 'yes' and the doc said 'Stop!' One leg recovered, the other he still drags.

This is very much a personal choice, but personally I would not take them especially when the guidelines flag the issue and as SlowDragon says cholesterol will lower if adequately medicated. This issue is widely mentioned in the literature so why are these medical professionals not reading this information. Words fail me......

[Catch57 in reply to Charlie-Farley]

That is truly scary and another good reason to void statins. Thanks

[Charlie-Farley in reply to Catch57]

see TeaFree below 😊👍. I think he makes a good point

[Catch57 in reply to Charlie-Farley]

yes I agree, very good point . 👍

[TeaFree in reply to Charlie-Farley]

I couldn't agree more re scepticism about knee-jerk doctor scrips for statins, and elevated cholesterol in the presence of an inadequately treated hypothyroid condition.

Time was that elevated cholesterol alone was enough to give rise to suspicion of hypothyroidism. That was before measuring the wrong things, and then just treating the tests became the norm.

At the very least statins will deplete coenzyme Q10, which is essential to maintenance of heart health, and whose deficiency is also implicated in broader myopathies. Some sources advocate CoQ10 supplementation for this reason, but the jury is still out.

Whereas, the medical focus is solely on achieving some sort of overall cost-death minimisation clearing solution, in which the patient in front of them is almost irrelevant.

So, those of us (like me) who have chosen, for now, to eschew the Whac-A-Mole statin scrip, should be aware that, in aggregate, the balance of clinical evidence favours statins over any known adverse consequences.

And that the onus on us is to be vigilant about our individual balance of risks (e.g. I have Gilbert's syndrome - in common with some 10% of the population - which not only tends to elevate cholesterol but also reduces susceptibility to CAD significantly).

As an aside, I suspect part of the quandary may lie, again, in the prevalent, flawed testing mania. Which just fits a patient-blind and back-protecting prescribing regime.

The problem may often be that we are simply not measuring what is going on in our cells at all. Particularly our vital mitochondria. We mostly just measure serum/plasma.

Yet, outside the ICU, our bodies will move heaven and earth to maintain such values 'within range'. And blood cells have no mitochondria. Otherwise they would gobble up e.g. all the oxygen they are transporting! Which does leave direct knowledge of the state of our mitochondria - where we get all our energy - somewhat open to question.

As a case in point, I think I'm right in saying that the full extent of any DIO1 and 2 snps, which may inhibit conversion of T4 to T3 in cells, would not necessarily be betrayed by measuring serum levels alone. Inhibition of the deiodinase conversion may be happening in mitochondria whatever the blood levels of T4/T3 may be.

Consequently, I am coming to the conclusion, with results similar to the OP's, that it is important to check these snps, as well as getting other vitamin values well up the range, if there is sustained fatigue etc., out of apparent proportion to testing norms.

[Charlie-Farley in reply to TeaFree]

Hi TeaFree

Indeed, the ‘not tested’ has as much (if not more) to tell us as ‘the tested’ - and symptoms which are there, plain as the nose on my face, are seemingly no longer needed. Doctors now have a plethora of tests, devised to completely rid them of the need to even look at a patient. 🙄

By the way love your Whac-A-Mole analogy 🤗

[Catch57 in reply to TeaFree]

👍

[Fruitandnutcase]

‘until I request results only to be told they are ‘normal’ and NFA required’

Do you know that if you live in the U.K. you are entitled to have your blood test results? Ask for them along with the lab ranges. Some surgeries used to charge - don’t know if they still do but they can’t just say they are ‘normal’.

What do they mean by normal anyway? Normal for the doctor? His receptionist? The receptionist’s dog? I suspect that what they mean is that your results fall somewhere within the lab ranges but not at a po8nt where you feel well. You need them to be optimal.

[Charlie-Farley in reply to Fruitandnutcase]

Yep on point! 🤗

[Catch57 in reply to Fruitandnutcase]

Exactly - normal for medicated or non medicated - I despair sometimes. I want optimal for me not 'normal' according to some algorithm. Yes, I know I am entitled to the records and results but for some reason I cannot access them on line and it really depends on which receptionist is on as to the 'reception' my requests receive. There appears to be a lack of consistent information. Some are most pleasant and helpful while others seem irritated that you have dared to interrupt them and therefore proceed to present barriers rather than solutions .

[Fruitandnutcase in reply to Catch57]

I think when I got mine years ago when I had Graves I must have phoned or possibly I mentioned when I was in that I wanted a print off of all of my records, I was told I could have them any time I wanted but was asked if I could come in in the afternoon when the surgery was quieter.

I went down and they printed them off while I waited. No charge either. Nowadays the surgeries around here file share with our local hospital and I can see my results on MyChart which is amazing. Last bloods I had done at our surgery started appearing on MyChart by late afternoon the same day.

[SlowDragon Administrator in reply to Catch57]

Request in writing to practice manager that your online access to your medical record is altered to allow you to see blood test results

[Wua13262348 in reply to Catch57]

I have to fill in a patient access request for results at my surgery. The first request took 5-6 weeks for them to be able to be picked up.

The second request I made was for a cortisol and a prolactin result which a new receptionist had told me, verbally, were both high and significantly over range. When I filled out the request form and handed it in , the receptionist commented that I wouldn't have a long wait for them, it should just be a matter of days. I waited 7 weeks for these 2 results which were on one piece of paper. There was no "significantly high " comment, which the receptionist would have read from the results. They had been" doctored. " They also blocked off supplying results for the year 2014, when I am absolutely positive they missed something significant which my optician had flagged up. I don't think the hold -up with releasing the results will lie with the receptionists. It will be the G.P.s deciding what can be released and what can't, and what needs "doctored. This is a possible reason for the receptionists' varied reactions. They may be being blamed for the delay, when they have done their bit, and the doctor takes a couple of months to release them!

Before your copies of results requested are released to you, a G.P. has to okay it. In my case it took them that long to release them as they had to decide what had to be "doctored", and what had to be with-held. Charley- Farley has had "doctored" results for years, and "missing" results. They are trying to cover up when they have been negligent, and really don't like that we feel they may miss something, which they do on a regular basis, and feel we are checking up on them.

From what I can gather, anything they with-hold, which they are technically not allowed to do, is allowed if "they feel it may affect your mental health, adversely",for instance, AKA you will be incandescent with rage because they have been negligent.

My surgery will give you results over the phone once a doctor has looked at them.

If your surgery does this, for future results , I would suggest you ask for them verbally first from the receptionist, and make a note of them. Only after you have done this , request a paper copy. You may find out something this way that you otherwise won't.

You could ask them for a Patient Access Request form to fill out, and that way they will either give you one to fill out ,or tell you that that is not required. If you fill one out you could ask them to copy the filled-in request for you. That way you are building a record that you asked for something and if you do not receive it, you can prove you asked for it, if they"lose" it.

When they realise you are keeping tabs on them, they won't like it. They may, however, be a bit more careful in how they deal with you, in case you do have cause for complaint e.g. not treating an iron deficiency per NICE guidelines.

It seems that G.P.s are only allowed to test vitamins and minerals, I think, if they suspect a deficiency, but not "to see if you have a deficiency."

Good luck!

[thegingerone]

have an overactive and have had for years. My GP is a little bit like yours. All I can say to you is do NOT be put off by your gp and DO keep pestering and pestering to get treated. Mine kept ignoring my symptoms and my blood tests results saying it was "The Meanapause". Well I have now got heart faulre and I am 100%sure it is down to the thyroid NOT being treated. Fingers crossed for you getting sorted mega soon

[Catch57 in reply to thegingerone]

ThNk you and so sorry to hear of your heart failure. Luckily I am well past menopause so GO cannot use that to explain my symptoms. Take care .

[HandS]

Hi Catch57

Don’t dismiss your symptoms as “minor compared to other conditions “ - they are not, and you are falling into a trap of low expectations set by the inadequate treatment you are getting.

Most of us on here have experienced the same. Do not down play your symptoms: thyroid disease is debilitating in the extreme and we all have the same right to better treatment and quality of life.

My own NHS Endo agrees that thyroid disease is the Cinderella of the NHS with little or no funding for research.

Like so many members of this group, you have to challenge your treatment provider : if you get nowhere with your GP practice, request a referral to a consultant. When I insisted on this - during a phone call - the GP said “I’ll do a referral as you are insisting, but I don’t see what good it will do,”!

But the GP was wrong - and the Endo changed my prescribing completely and I am much better than I was .

Expect better, demand better - you’d probably do it for the people you care about - 🙂. Find your way to protest the poor treatment you are getting, your symptoms are real. Take the message back to your treatment providers.

Wishing you good luck and better health p

[Catch57 in reply to HandS]

thank you. Your words are very encouraging.

[Insomania]

You’ve got 25mg further than me but I too am sick of my GP surgery. GP said there’s nothing wrong with my thyroid and I need to “move on.” Not quite the moving on he meant but I’m going for a second opinion from a private endocrinologist because while blood tests are below NHS criteria there’s something going on between HPT axis. I read Barry Durrant-Peatfield’s book Your Thyroid and How to Keep it Healthy. Ultimately give it another try and find someone else. Dr’s who don’t want to listen are no good to us.