As I’m still very symptomatic (hypothyroidism with history of results in bio) I went back to the GP to explain this, share my Blue Horizon test results and ask for a trial increase to 125mg of levothyroxine.
Not a great appointment- apparently I shouldn’t lay everything at the door of my thyroid! GP mentioned CFS but there isn’t a test and looking at the psychological side of things first. He’s referred me to talking therapy and changed my HRT. Also going to retest my cortisol and oestrogen in mid July.
Feeling frustrated and wondering if it’s time to consider a private endo appointment? Or do I wait until after the blood tests?
This is a bit of a rant and shared here because I know there are people who will understand.
Thanks for reading!
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Slowrunner1208
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So sorry to hear this. For you doctors information Hypothyroidism is meant to be an exclusion factor for the diagnosis of CFS.....Can you see a different GP?
I meant to add I got referred to talking therapy a long time ago. The psychologists opinion was my mental health is good and he said he felt there was physical cause not a psychological problem . Made me smile!!
But your right re the private. I had to see someone private before I could get my dose optimised. Sadly that person passed away and the NHS one I saw after that retired!! But they both wrote a plenty and my GPs allowed increases and were supportive when I finally moved to a NDT. I've been stable for many years so was discharged.
Sorry to read this - it's not a solution and leaves you questioning your own logic :
When I started researching for myself everywhere suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work well.
And in the meantime get the patient to patient list of recommended specialists, both NHS and private from admin at Thyroid uk - thyroiduk.org
Actually looking back at your previous post SeasideSusie has explained in full all the necessary readings on your low vitamins and minerals so hopefully once well supplemented your conversion of T4 into T3 will improve.
Hi SlowDragon, following advice here I've been supplementing: Liposomal Vitamin B complex , Vegavero folate, Core Nutrition Vit D3+K2, magnesium (oxide) & zinc and omega 3 fish oil. This is alongside my levo, HRT and an antidepressant
You MUST get full iron panel test BEFORE considering adding any iron supplements
Timings of levothyroxine and supplements is important too
Levothyroxine must be 4 hours away from vitamin D tablets and magnesium
And 2 hours away from B vitamins, zinc and omega 3, and antidepressants
B vitamins, zinc best taken after breakfast
Vitamin D mouth spray can be after breakfast
Vitamin D tablets or gels with food ….usually dinner
Magnesium best late afternoon or bedtime ….depending on if you take levothyroxine at bedtime
Personally I would suggest you take levothyroxine at bedtime
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
When you start iron supplement that should be at least 2 hours away from all other supplements and antidepressants and 4 hours away from levothyroxine
HRT 4 hours away from levothyroxine too if pills not patches
Thanks SlowDragon I take my levo in the night time varies but generally between 1.00 - 3.00am. I take B supplements after breakfast, anti depressants and HRT mid morning, Vit D spray after lunch, omega 3 just before tea and magnesium late evening.
My magnesium is with zinc so I will look at getting separate ones. And will look to rejig things to take levo at bedtime.
GP was reluctant about testing iron so I may need to go down the private route. My red blood cell count in Feb was 4.27 [3.8 - 4.8]. I have been eating liver pate once a week to help.
The gluten free hasn't made any noticeable difference yet but I will persist. Dairy free will be tough I use milk for making kefir to aid with digestion / gut biome. I didn't drink much anyway but have stopped completely.
Really do appreciate all the advice here, everyone is very kind and generous with their time 😊
It defies reason but medics seem to come up with a raft of unverifiable reasons as to why we feel unwell instead of considering the glaringly obvious....which can be verified!
How they might change their entrenched ideas beats me so we have to work with what we ourselves know to be facts.
Starting with the labs you posted a month ago
Your FT3 is too low
Your vit D is abysmally low
Likewise your folate and ferritin
Your TPO antibodies are very high
What you can do....
Re nutrients look back at SeasideSusies excellent advice in your previous post.
Your T4 to T3 conversion is poor... so FT3 is low
Optimising essential nutrients will support thyroid function / conversion
Increasing levo may help but you don't have much space in ref range for a large increase....you've been on 100mcg since March so no reason why you can't trial 125mcg.
Maintain 125mcg for 6 weeks and test again
Unless your FT3 is over range you are unlikly to be overmedicated...whatever medics say about TSH.
You are perfectly entitled to refuse any treatment your GP suggests and you are also entitled to have your views/ concerns considered by said GP....it's called Patient Autonomy
For good health almost every cell in the body needs to be flooded with T3 which must be available in a constant and adequate supply.....your T3 is far from adequate
I need high dose T3-only to function so I've done the hard yards regarding it's importance!
I think you first need to have a serious discussion with your GP or another in the practice and/or a discussion with the practice manager pointing out you feel your concerns are not being addressed
We have given you evidence to back up a levo increase and for nutrient tests.
You need a loading dose of vit D for a start
My younger son is going through a similar experience and raising his miserably low vit D is showing signs of improvement now.
You're welcometo rant....as you see I rant all the time such is my disgust at current thyroid care
Not a great appointment- apparently I shouldn’t lay everything at the door of my thyroid!
Rediculous... first your thyroid disease needs to be correctly medicated and that is the job of your ill informed GP!!
Politely and firmly insist that they increase your dose....they might even learn something from you!!
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
Test early morning, only drink water between waking and test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Does Biotin affect all blood tests? I thought it was just thyroid blood tests. Am interested because I had pre op blood tests done a while ago when I wasn't made aware they'd be doing them. Skewed the thyroid tests well and truly. So they reran the thyroid tests 10days later but not any others....
Interesting..... They just reran the thyroid. Hey ho.... That was mainly cos I kicked a storm up and GP wanted to cut my Armour dose by over a third..... Scary. Sent that directive by text! So much for consultation! I did look it up in online to check.
In some tests, with some test machines, the machine itself uses biotin as part of the testing procedure. So if the sample being tested contains higher than normal levels of biotin because of supplementation it can corrupt the results from the blood sample being tested.
Some test results might be higher than they should be and some might be lower. And there is no way to tell which way the corruption has gone or by how much.
Yes indeed! My thyroid hormones came back allegedly sky high. They weren't of course. But it doesn't seem to affect many blood tests from what I read : thyroid, vit D, & one other that I've forgotten...
Biotin interference gives falsely high or low results in competitive or immunometric immunoassay respectively (4). It may cause falsely raised thyrotropin receptor antibodies (TRAb) as seen in one of our patients. This could lead to a misdiagnosis of Graves' disease. Biotin also interferes with the measurement of testosterone, oestradiol, dehydroepiandrosterone-sulfate (DHEAS), parathyroid hormone, ferritin and thyroglobulin, testosterone, thyroglobulin, leutinizing hormone (LH), follicle stimulating hormone (FSH), sex hormone binding globulin (SHBG), vitamin B12 and folate (4).
The above quote came from a source which, unfortunately, no longer exists.
Apparently biotin can interfere with some troponin testing - by reducing the result - which is a test often used to see if a patient has had a heart attack.
It is possible that since this biotin problem has been discovered that some manufacturers of testing machines have updated their testing methods, but I haven't looked for more up-to-date information.
Don’t underestimate talking therapy. I found it incredibly useful at a time when I felt totally isolated from ‘help’. In fact like waveylines the psychologists opinion was my mental health was good and the cause physical. She helped me adapt to the shocking ‘unhelpfulness’ of our NHS. Neither ‘bedside manner’ nor scientific information is available from medics. It’s really a shocking service - totally damaging in itself! It seems to me medics lack maturity and are therefore incredibly naive and arrogant. It’s a heady damaging mixture for the patient.
I find when I am changing doses I can return to that state of complete abandonment and I have to keep strong. I could not do it without that help I got from that psychologist and from the forum - the only place there is guidance to be found.
Like arTistapple i accepted referral to psychologist….and similarly the psychologists opinion was my mental health was good and that the cause physical …….this assessment got me my (previously refused) referral to thyroid specialist endocrinologist of my choice
Oh that is interesting SlowDragon. It never occurred to me to use it for any sort of leverage. However I live where an ‘important’ endo rules so I would not choose to go and see anyone in his domain anyway. My GP, or at least my last GP (never see the same one twice now and they never seem to check the notes) is trying to get me to take anti-depressants even now. I must remember to use my psychologists assessment.
Two people have told me in the last few days that unfortunately their ‘referral’ took them to see said important person and he has taken all their meds off them “to see where we are”. Both have been on meds for many years. Both had the option of not agreeing but to me it seemed under duress. You are speaking to a ‘VIP’ in endocrinology terms. What choice do you have?? I have advised both to post on the forum; although I think their confidence may be too shaky at the moment. It’s totally scandalous. I can’t rid myself of thoughts of ‘wrong doing’. I think it’s downright creepy. This guy (in my opinion) is carrying out medical experimentation on patients with what amounts to improperly informed consent agreed under duress. Like jimh111 describes in the London Clinic.
Recently a VIP in neurology has been found out for experimenting on patients. Everyone thought he was the business - except the patients and the whistleblower. It’s not until there is a lot of evidence accrued, it seems, before anything can be done, such is their power.
However, according to the recent rewriting of the guidance on prescribing, they may have covered their own backs yet again.
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Successfully negotiated Levo increase but GP has scared me 😱
Results back, GP says 'normal' and no increased Levo needed, gutted... 
GP visit. Assistance please. She has agreed to raise my levo, but in a round about way.
Visiting gp for first time since being put on Levo
How to convince GP to increase Levo when blood tests \"normal\" range?
