Hi everyone I hope you can see the results ok , I couldn't get the PDF into the box without the info corrupting, so had to take a photo.
The test was taken before 9am and my mum had fasted for 12 hours and hadn't taken levothyroxine for 24 hours.
Her symptoms are as follows , poor balance co ordination, headaches, itchy skin, skin around eyes red, acid reflux , wind (burping), coughing up white frothy liquid,choking (neck), hair loss , fatigue, pain stiffness in joints , candida (yeast in mouth), geographic tongue , constipation , brain fog , trouble remembering (mostly words), anxiety / depression, poor vision (blurred), easily stressed , feeling cold, feeling hot at night, waking up in the early hours of the morning , night sweats, catching colds all the time.
current meds - illnesses
levothyroxine 50 mg (was 75 mg until the GP changed it a couple of months ago
b12 every three months for pernicious anemia
amolodopine - high blood pressure
gaviscon - all the time
omeprazole - acid blocker
hiatus hernia
Thank you in advance to anyone who replies
Joe
Written by
JosephMaxwell
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She is clearly undermedicated. She needs to have her levothyroxine increased. Find out why the GP reduced her dose, the exact reason. It might be due to complex thyroid issues or stupidity. You need to find out which. She needs her levothyroxine dose restored.
thanks for your prompt reply , I attended a meeting with the GP and my mum about three weeks ago, I was asking why they reduced her thyroxine, but my mum was so stressed she bombarded the GP with her ailments, and I got distracted, the GP put all theses symptoms down to old age, when I suggested it might be Mums thyroid and asked if she could be tested for inflammation ( re choking ) the GP said we only do TSH and T4 and they are normal. I tried to challenge this, but my mum doesn't like me to cause conflict with health professionals, unfortunately shes of the generation that thinks her GP right about everything. The only reason I can think that they dropped her down to 50mg was due to a slightly abnormal kidney result her blood test. But I think you're right thyroxine needs to to increase.
Unfortunately, PDFs cannot be inserted, only images 😊
'levothyroxine 50 mg (was 75 mg until the GP changed it a couple of months ago '
As the TSH is now 16.5, FT4 at rock bottom of range and FT3 below range, I cannot imagine why the GP previously reduced the levothyroxine dose. No wonder this poor lady has so many debilitating symptoms. There should be an immediate increase back up to 75mcg, with follow up testing in 6 weeks.
Many thanks for replying, as I've just posted in another reply, I tried to find out why they had dropped her thyroxine, at a GP meeting with my mum ,but I got distracted , cos mum was so stressed , she over loaded the GP with her symptoms. I think you're right more thyroxine.
I think it would not be surprising that some GPs make False Statements. I myself was not diagnosed and even though TSH (thyroid stimulating hormones) was 100 when we're supposed to be diagnosed when TSH is above 10. (p.s. to read my background you can press on my name that will take you to my personal page).
Thanks to Thyroiduk.org.uk I found my way to good health and I was fortunate to consult two of the remaining 'old school' re hypothyroidism as they were most knowledgeable. Unfortunately many 'old school' GPs have retired but they could diagnose a patient with hypothyoidism without any blood tests. Many doctors seem to have no knowledge these days and I'm sure it is due to insufficient information give to them.
With information from this forum, I'm sure your Mum will feel much better quite soon. Members are very helpful and many are also knowledgeable.
You will also receive other information from members.
I read your bio ...so sorry about what happened to your mum ..that must have been horrendous.
At times I feel like we are in the dark ages with our health care ..it's become too symptoms based ( take this pill) with no work on finding the root cause of the problem.
After reading your experience,and the poor women who took her own life ..and watching how my own mother has been over the last three years..it's a wonder many more people haven't lost their battle, I'm very grateful to the people who took the time to respond to my post , it's got me through a very tough weekend ..and saved me a ton of time researching to find out what the next best move is ..and also it's made me feel less isolated, so I can take a deep breath and start over with a degree of hope in making mums life liveable again
Your Mum's dose of T4 needs reinstating and possibly even increasing again :
We generally feel best with a TSH under 2 likely under 1 and low in the range - Mum's is currently 4 times over the maximum top end of the range detailed.
Her T4 is just in range at 10% and we generally feel better when at around 80% through the range :
Her T3 - the active hormone that runs all bodily functions, including her mental capacity, and her psychological, emotional, physical and spiritual wellbeing is below the accepted range.
T4 is basically inert and needs to be converted in the liver, into T3 the active hormone that is the body's fuel and kick starts metabolism.
A diagnosis of hypothyroidism results in a slowed metabolism, which in turns needs to low stomach acid and the inability to naturally break down and extract key nutrients through food, no matter how clean and fresh one eats.
T4 - Levothyroxine needs to be taken with a glass of water well away from any other medication and on an empty stomach for maximum absorption.
T4 - Levothyroxine also needs optimal levels of ferritin, folate, B12 and vitamin D to work well in the body and convert to T3 - the active hormone.
I now aim to maintain my ferritin at around 100 : folate around 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100:
I found when I reached 65 my dose of T4 was automatically reduced without discussion and over the next 2 years I was in an ever decreasing circle of wellness.
So grateful I found this forum around 6/7 years ago now and am much improved, back to my normal - though self medicating as refused any treatment options on the NHS - I haven't a thyroid and with Graves Disease, post RAI thyroid ablation back in 2005.
many thanks for your detailed reply, I can so understand your decreased wellness , its a real rollercoaster ride of ignorance and just an unwillingness by the medical profession to accept what is clear to people who are experiencing thyroid issues. Its a relief to get somewhere at last, and see some light at the end of a very dark tunnel, this forum has been so amazing.
Poor mum, as the others have said, she needs her Levo increasing immediately. First aim is to get her TSH within range, once that's been achieved you can work on getting her the correct dose where she feels well. Generally most hypo patients on Levo only tend to feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges, but it's very individual so mum will need to let you know where her sweet spot is, hopefully she will have no problem getting her increases.
Her raised TPO antibodies confirm the cause of her hypothyroidism is autoimmune (the most common cause) and is known to patients as Hashimoto's. Did you already know this?
She is on quite a bit of medication, remember that Levo should be taken on it's own on an empty stomach with water only, 2 hours away from other meds and supplements and 4 hours away from some which includes Omeprazole or other PPIs.
HbA1C
Good result!
Iron panel
CRP is nice and low, no inflammation.
Serum iron is 34.49% through range which could be better, 50-70% is deemed optimal with higher end for males.
Ferritin is not bad at 72.9 (13-150). Some experts say the optimal level for thyroid function is 90-110ug/L
Saturation at 27.6% (20-50) - optimal is said to be 35-45% with higher end for males.
See if mum will eat some liver regularly - no more than 200g due to high Vit A content - to give iron levels boost, or maybe liver pate, black pudding, and other iron rich foods:
Cortisol is over range and the fact that she's stressed is no surprise. GP should look into this.
Vit D is pretty good, it's recommended to be 100-150nmol/L by the Vit D Council, Vit D Society and Grassroots Health. Does she supplement?
B12 is being taken care of by injections, does she think she's having enough? Some people need them more often than quarterly so if she's getting symptomatic between injections maybe ask GP to reduce time between them.
Folate: 9.40 (8.83-60.8)
As she is on B12 injections for PA, does she also take a B Complex to help keep all B vitamins in balance? Her folate is very low in range suggesting that she doesn't. She should consider taking one as folate is recommended to be at least half way through range and B12 and folate work together. It might be worth considering a methylfolate supplement at the moment to give folate level an immediate boost. When taking B Complex we need to leave it off for 3-7 days before any blood test as it causes false results due to the biotin it contains.
Thank you for the detailed response, as I've posted to a few other replies, youre right levothyroxine needs increasing. I think I many have a battle on my hands with the GP as our last meeting didnt go well, mum was crying because the GP said it was all just old age. I asked about auto immune , and even said hashimotos ( only because I'd read about it on the forum,a and I asked if she could be tested for it . the GP was not happy and stated that they only offered TSH and T4 and that mums last results were all normal. I was not impressed.
my next move is to book a private end0 ( who also does NHS ) to review the results , write to her GP and get the GP to refer her to the same Endo . so we might hopefully get a scan on her thyroid and some proper monitoring.
Your Mum's GP should be pleased with him self making a dear old lady cry. I wonder if they learn that at med school somehow I don't think so, but nothing would surprise me. Good job that she has you, wonderful son I hope she soon gets well.
thanks for your reply, her GP is actually a woman , your kind words are much appreciated , into battle we go I think , at least now I have the knowledge and personal experiences that the forum provides.
"I think I may have a battle on my hands with the GP" .
You have nothing to worry about on that score, because your mums TSH is now 16 .
Any GP would recognise that TSH of 16 is far too high and should put the dose back up a bit to try to lower the TSH and get it back into range .
(They are told in NHS guidelines and training to start treatment if TSH is over 10 even if in people who have no symptoms .. and once on treatment they are told to keep patients TSH 'within lab range' (which is usually under 4/5 ish depending on lab) nice.org.uk/guidance/ng145/...
"1.4.1Aim 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."
presumably the GP didn't know her TSH was 16 when you had your last encounter with them .. so all you need to do is make them aware of this private TSH test result .. (they will need to do their own TSH test to confirm this)
What they SHOULD have done already is organise their own TSH test between (6 weeks -3 months) after the dose reduction to check her TSH on the lower dose for themselves .. was this done ?
On the last GP visit (20/4/2023, she said mums TSH and T4 were normal , I agree that they should have monitored her, after reducing her to 50mg, but she has been ill for quite some time, and I get the feeling from how her GP spoke (' look at all these tests we've done) they see her as a problem.
2)ask if they tested TSH following the dose reduction. (or were they basing the 'TSh' is normal' comment on results prior to the reduction)
3) and if they had not retested since dose reduction , why did they not organise a TSH test at your last appointment when she was clearly struggling.
4) find out why the dose was reduced.. eg TSH too low /fT4 too high / somebody twiddling the knobs based on a hunch about her symptoms / or just the general idea that older people's dose needs reducing simply because they're old .
Yes Mum hasnt been well for some time, and unfortunately we have a GP who just either doesnt understand, or isnt interested, I tried to get her tested for hashis, but was told they only offer, TSH and T4 , and that her last results were normal, this is all just old age according to her GP , its hard to believe it really is.
Don't worry too much about Hashi's right now....the treatment is the same. The only help, if it exists, is often a gluten free diet and correct thyroid hormone replacement.
Have you considered speaking/ complaining to the practice manager, explaining how this GP upset your Mum and that you are not satisfied with the heartless treatment meted out to her. Explain that the solution appears straightforward ( cite info from here ) but that the GP will not engage....a sure sign of ignorance in my book!!
Doctors are supposed to listen to patients and take account of their concerns....not brush them aside
He is in no position to ignore his duties as listed here
I'm almost 78 now and it took until my 60s to begin to realise that medics were not diagnosing or treating me properly....I could barely function! Like many here I have to self source and to self medicate with T3....I possibly owe my life to this forum!
I'm ranting again but experiences like those of your Mum make me angry.
Don't stand for it....she's lucky to have you batting on her side!
I do think the GP ( a lady by the way ) was completely heartless, and I was furious, but my mum doesnt want me to challenge the GP, in case they take her off the books ( it would be a blessing in my view) . But for my mums wishes , I would have made a complaint , I think youre right about putting hashis on the back plate ,and finding out why she was reduced to 50mg ( it could be abnormal kidney result from the bloods), but I do need to find out, Ill give the articles you listed a good read, I want to be well prepared for any guff they might give me.
JosephMaxwell, I don't know whether this is relevant to your mum's case. Reading through the conversation so far, I feel everything has been said. However, you keep mentioning that maybe the dose was lowered due to kidney issues. My GFR used to be below reference interval until I was put on T3, which increased my kidneys' filtration rate to normal. In other words, my kidney function improved with the addition of T3. As mentioned by others here, your mum's thyroid values are way too low and the TSH way too high. Bringing her hormone levels to where they belong might also solve the kidney problem.
You find yourself in a difficult situation with your mum putting far more trust into doctors than they deserve. My generation was brought up to bestow near sainthood to doctors, but, if nothing else, there has to be the realization that doctors are human beings (albeit with an inflated ego still based on their previous high status as DOCTORS). They do make mistakes and they bring their own issues into practice. I hope your mum realizes that you are not being disrespectful to the saintly doctor but are protecting her interests and her health. She is lucky to have you to speak up for her and shielding her from medical error and ignorance. Wishing you and your mum much success and all the very best.
Thanks for replying ..my opinion traditional medicine had drastically altered over the last few years ..too much emphasis on giving a pill for symptoms and not enough diagnostic to find the root cause.
With my father in particular I think he was left on various drugs over the years that did little to avert Alzheimer's and depending on what you read could have contributed to its cause.
I don't think I'll ever be able to shake my mother's utter belief in the ability of doctors to solve her problems ( she also is an ex nurse and they did believe doctors were infallible)
Interesting re your kidney experience and T3 ..can I ask were you one of the lucky ones to get T3 on the NHS ..or do you purchase privately?
I'm actually in Canada and, thanks to this forum, was contacted by a fellow Canuck, who lives in the same area as I do. She gave me the name of a nurse practioner who specializes in hormones. Our "health"care system here is as terrible, if not worse, as it seems to be in the UK. We do not have a "private" option for medical care, but this nurse practioner works out of a naturopathic practice and therefore bypasses the "governmental" medical system. I have to pay for her care, but it is well worth it. The only other option Canadians have is to cross into the States and hope to find a good doctor there. And, although doctors from Canada are accredited in the States as well, the diagnosis of a doctor practicing in the States is not necessarily accepted as valid in Canada. So a patient has to continue to take their money to the States to get appropriate treatment (if they found a good doctor there). Oh, and all our good Canadian doctors seem to leave Canada to practice in the US of A.
Joseph, I think that is the idea in Canada as well. The healthcare system is systematically broken to "evidence" that it is not working and needs to be replaced by a "better" system as seen in the US (where the rich can get all the very best care and the poor are left to die). Increasingly the conservative political groups are drifting towards this direction. I share your worries.
I certainly think our system needs reform ..but I don't want that to become an excuse to do away with universal free care ..there are quite a few private organisations already part of the NHS ..it's a real catch 22 ..all my life Ive been vehemently opposed to private health care ..but over the last 3 years with mums issues ..I've had no choice
Most are improved when TSH is under 2, many need 1 or under.
More importantly FT4 & FT3 should be in higher part of range. Unfortunately many GPs think TSH & FT4 should be in range. They go by numbers rather than making patient well.
Did GP previous reduce dose due to low TSH? As not testing / taking into account the FT4 & FT3 and altering dose on TSH is a poor strategy. TSH can be unreliable.
Your mother has positive TPO antibodies which confirms the thyroid issue is autoimmune. Levels can fluctuate but this tend to occur early on.
Have her thyroid issues been diagnosed many years ago or more recently?
It’s fairly common for doctors to ignore the autoimmune aspect. Hashimoto’s or autoimmune thyroiditis is referred to as under active thyroid as it’s low levels that are treated.
If antibodies are tested it’s usually early on to confirm diagnosis & it is rarely repeated.
Magnesium in blood is usually well controlled. Doctor should investigate high results further. It may be caused by the use of PPI sometimes if kidneys are not functioning well.
Has there been any changes in the timing of medications, are the taken at the right time. Is the PPI & blood pressure medicine taken away from when levo is taken?
many thanks for your response, I don't know why they reduced her to 50 mg , I can only think its because she had an abnormal kidney result on her last bloods. ( I did try to find out why they had lowered the thyroxine to 50mg when I last met with her GP, but mum was so stressed she bombarded the GP and my question got lost in the replies. I suspect she has had a thyroid issue for many years as she has pernicious anemia and has been getting b12 injections for a number of years, and was told she had it due to not having stomach acid. I think shes been on thyroxine for a number of years , no mention of autoimmune thyroiditus. I tried to talk with the GP about autoimmune thtyroid and she got very annoyed and said they can only test TSH and T4 and that her levels were normal. I also asked about mum being on PPIs as I had been told she already had low stomach acid , I also asked how would she be able to digest food properly if there was even less acid, the GP checked the dosage of PPI and said , shes on a very low dose, lots of people are on much higher and have no issues. The GP told mum all her issues were age related and there was nothing she could do.
Upshot is , mum has been to the hospital three times this week , and shes come away with .......more PPIs ..which I know wont help at all.
Mum does have an issue taking her thyroxine, I asked her to start taking it at night , because she was taking her blood pressure, PPIs and thyroxine together,and eating. To be honest shes at her wits end and doesnt know what to do, this morning she took her thyroxine with all her other meds and had something to eat, its hard to explain that she wont get better if she does this , but in her view no matter what she does nothing gets better.
I think its book a private endo next. to write to her GP, to then get a referral to NHS endo ( who is the same person as the private endo). It all takes time and mum just feels awful.
Levo needs to be taken with water away from food, (&teas, coffee) and other medications & supplements. Leave at least 1 hour, - some like omeprazole need 4 hours (I believe)
Omeprazole will lower stomach acid. Doctors always assume high stomach acid is cause of problems but low stomach acid causes same symptoms eg reflux.
Low stomach acid fairly common with low thyroid & will affect absorption of any medication & ultimately nutrients.
To confirm if stomach acid low you can do a DIY test to check. Called “the burp test”
First thing in the morning, before eating or drinking anything (& taking medication) Mix ¼ tsp baking soda in 4 to 6 ounces of cold water.
Drink the baking soda (US) bicarbonate of soda (UK) solution.
Time how long it takes for a burp to occur.
Time it for up to 5 minutes:
If you have not burped within five minutes, it may be a sign of insufficient stomach acid.
Early and repeated burping may be due to too much stomach acid (do not to confuse this with small burps from swallowing air when drinking the solution).
Any burping after 3 minutes is an indication of low stomach acid levels.
Some use digestive enzymes and or apple cider with the mother vinegar. eg watered down in glass water or in gummy.
Thanks for the test info . Ill try that once things calm down, Ive tried the apple cider vinegar, it didnt seem to work, and at one point in the past I tried Betaine HCL that didnt work either. The acid blockers have been a real thorn in my side over the last three years. Im very much of the opinion she has low stomach acid (hence she has pernicious anemia )
I think I should have tried apple cider vinegar and maybe a digestive enzyme (with ox bile) together. I watched a vid on u tube by Dr Childs who suggested that omeprazole stays in the body for 24 hours so its pointless taking levo at any time, the acid blocker will always interfere with it, I battled hard to stop her taking omeprazole, but when she cant see any improvement its back to the default, even tho a gastro specialist we went to see told me she shouldn't take them.
You want to avoid conflict but if the doctor should get agressive again you could say that due to your mother's age you want to avoid any further errors. This should put her on the back foot and stop any more unjustified assertiveness.
I feel much better informed after all the posts I've received today ..and as they say .. knowledge is power ...if I can get the GP to up her thyroxine and monitor it ..that would be a result
I only found out about the kidney issue because I asked the GP during a face to face, what tends to happen with mums surgery is , you have a blood test and if you dont hear from them , theres nothing to be concerned about ( I know this isn't deal) , if you phone them for info , you get a receptionist who tells you there aren't any issues.
Hi slowdragonI missed one of your questions ..u asked whether mum had been higher than 75mg ..in the depths of my mind ( but I am going to get all bloods and data etc) I think she might have been on 100mg ..but I seem to recall she looked very thin.
I was looking at the NICE guidance re weight etc . She's about 60kgs and I worked her out to be 97 ..which would mean 100 mg . Have I got the NICE guidance right ?
Yes. Increase slowly in 25mcg increments. Personally as her levels are so low, I'd ask for a blood test to check levels after 6 weeks. Though, you have to leave about 12 weeks if you are decreasing levothyroxine dose as its long half life means it takes a long while to leave the body.
That's an interesting point re the decrease of levo and taking 12 weeks to leave the body ..I'm thinking that timing would match when they reduced from 75mg to 50 mg and why she got so poorly over a 3 month period ..some real pearls of wisdom BB001 ..enlightening ..thank you
She might not need 100mcg ….might need something in between 75mcg and 100mcg
Many people have to fine tune levothyroxine dose
Small dose adjustment after getting to 75mcg
Perhaps 75mcg 4 days a week and 87.5mcg 3 days
Always the same brand levothyroxine at each prescription
(making sure she takes levothyroxine EVERYDAY and on empty stomach and no other medications within 2 hours…..and PPI at least 4 hours away……recommend a weekly pill dispenser….especially if she ends up needing to fine tuning dose)
But …..Wait at least 8-10 weeks on 75mcg then retest
Test early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
If she normally takes 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
once she gets nearer correct dose should be able to reduce then eventually stop PPI
Ok ...I guess my query is .. how does one know if the dose of 75mcg is right ...what clues are there to suggest that an increment up to 87.5mcg would be required ?
And how would I get a dosage of 87.5mcg .. do I cut a tablet ..? ..is there a way to be precise ?
Fine dose adjustments of 12.5mcg can be prescribed by either, 'alternate day dosing' , eg .
62.5mcg ~ 50mcg one day/ 75mcg the next etc
or if you prefer , cut a 25mcg in half , and take '50 mcg = half a 25mcg' each day.
(use same principle for getting eg. 87.5mcg /day ... '75mcg one day/ 100mcg the next', or '75mcg +12.5mcg daily' )
if the halves are not quite equal it doesn't matter, it will even itself out in the body , T4 had a long half life in the blood (about 7 days)
(12.5mcg tablets are available , but not often prescribed as they are stupidly expensive compared to the other sizes, and they are only made by Teva which doesn't agree with some people)
even finer adjustments can be done by eg:
6 days 50 mcg / 1 day 75mcg = 53mcg /day
5 days 50mcg / 2 days 75mcg = 57mcg /day
4 days 50mcg / 3 days 75mcg = 60mcg/ day
See how your mum feels after 6-8 weeks on 75mcg , get retested at that point before deciding if any further adjustment is needed ~ 25mcg adjustment are often bigger than is needed , and symptoms can take at least 6 weeks to settle down on new dose .
Joseph the body likes stability so the aim is to find the best dose and stick with it. 2 years on from me settling on a dose and things are still improving.Also once on a dose for a long time, don't change the dose based on the result of 1 set of blood tests. Always wait 6 weeks and redo just to check otherwise you can end up on a roller coaster.
Your mum is legally entitled to copies of all her test results and ranges done via NHS
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.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Brand levothyroxine
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or any PPI or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If 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
Many thanks for your reply . I think I've probably taken my eye off the ball were my mums meds are concerned, shes very independent, but with all her symptoms think she has been overwhelmed. I look after my dad who is nearly 94 with late stage Alzheimer, we dont have carers coming in as we were concerned about covid.
Mums surgery I feel dont offer a great service, I attempted to get patient access about a year ago (mainly because I could never get an appointment ringing at 8am) but the surgery kept giving me details that wouldnt work . so I put it on the back burner. I did advise mum to start taking her levothyroxine at night, because I was concerned that she wasnt taking it away from other meds, I think now I have to consider whether she has been taking it intermittently at night. I need to start monitoring the meds myself, its just always been a care/control issue with mum, but as shes been so poorly she now hopefully will accept my intervention.
I did a quick calculation of her T4 to T3 conversion rate which was 0.21. Calculation is fT3 ÷ fT4. This is classed as poor in this research by Midgley et al 'variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency.' ncbi.nlm.nih.gov/pmc/articl...
A raised TSH should improve conversion rate of T4 to T3, so her usual conversion rate of T4 to T3 might be lower than this.
Her high TSH and low fT4 indicates that she has room to increase her levothyroxine dose, doing so should raise T3 as well.
Using the tool provided by this site you can calculate the % through range of each of her thyroid results. thyroid.dopiaza.org/
Patients on levothyroxine are advised to have a TSH of 0.5-1.0. I think this is also in the research I quoted above. Her TSH is much too high.
Low FT3 is associated with kidney problems. Your mums fT3 is low. I notice my creatinine rises when my fT3 decreases. There is also research that supports this. Google 'ncbi thyroid creatinine'.
Her fT3 is much too low and in my view is likely to be causing most of her symptoms. It would be good to get her fT3 at 75% of range and see what symptoms remain. Given your mum's low conversion rate you probably won't be able to get fT3 up to this level by levothyroxine (T4) meds alone, but a dose increase, possibly even upto 100mcg daily would help. If an increased dose is allowed, I suggest you increase slowly by chopping tablets up. Say increase by 6.25mcg every 2-3 days. This means you'd increase by 25mcg in a week.
Her B12 is way too low considering she is getting injections for Pernicious Anaemia. She needs them more frequently than 3 monthly. The UK guidelines do allow for this.
Im going to book a private endo who also works for the NHS, from thyroid UK list of people, hes been known to write to GP advising T3, I've read getting T3 on the NHS is quite difficult do you think Is should source a T3 ?
Yes I think you should try and get an endo to prescribe T3. In the meantime a T4 dose increase is essential. Ask for another blood test. The justification is checking the effects of the change in dose. I found that Medichecks blood tests were in line with my NHS GPs. I took medichecks tubes to my NHS phlebotomist when I was having an NHS blood test, and the phlebotomist filled my tubes at the same time.
My GP is very good and will test whenever I ask. This relationship has been built up over many years and is helped by the endo I saw validating what I'd been saying. As I'm on T3 only the endo has requested that my GP test fT4 and fT3. To get these done, my GP puts 'T3 + T4 as per endocrinologist request' on the bottom of the form.
Would it help to give your GP a copy of Midgley's research that shows how important T3 is? With a brief covering letter saying why you think it's important. Whether this will work well depend on the GP. Even GPs at the same surgery can have widely differing views. Young ones seem more amenable.
I did an experiment. I had an NHS GP blood test, the phlebotomist filled the tubes from medichecks at the same time. The results from both corresponded. I also did the same experiment between GP and blue horizon blood tests. Blue horizon results were a lot different to my GP's. So now I use medichecks if I ever need a blood test and can't get an appointment quickly with the GP's phlebotomist.
I don't think my mum's GP or surgery are progressive in any way ..I think it'll take an endo to point her GP in the T3 direction ..how varied is the difference between the blue horizon and the NHS ? ..are we talking vast ? .. and in your experience if someone has hypothyroid ..what are the NHS willing to test on a regular basis? and do you use the medi checks to test what the NHS don't cover ?
That's kinda disappointing ..I knew there was variance with different labs ..but when I was looking at which company to use for the tests ..something I read on the forum steered me away from medi checks ..can't remember what it was ..
The doctor's comments with medichecks weren't very good. But then I'm a bit unique as I'm on liothyronine (T3).Your main task with the GP is
1) to get a NHS thyroid blood test to check levels on the reduced dose. The doctor might not take kindly to the blue horizon blood test results saying they don't value them. In which case respond i understand you can't accept private blood test results, however would you please do a NHS blood test to check my mum's levels on the reduced dose. (Hint: guidelines say levels should be tested after a dose change).
2) get dose increase to 75mcg.
After 6 weeks
3) get blood test to check levels (8-9am, no levothyroxine until after the blood test.
4) get levo dose increase to 100mcg if warranted by blood test results.
That was my concern re the blue horizon tests ..however as you say ..if the guidance states tests after dose changes then the GP can't really object ..just on the timing of blood tests ..I got the blue horizon bloods drawn before 9am ..is this an anecdotal idea from this forum or is there evidence.. I ask because she's never been advised to have bloods taken at that time when testing thyroid function ..also the levothyroxine..I got mum to stop taking for 24 hour prior to the test..is this anecdotal ? and also had her fast prior to the test
You did right to get tested at 9am and to leave off levo for 24 hours and to fast. You want to know what her levels are, not what's in the pill she's just taken!
good morning, so sorry to read of your mothers care. All her symptoms you have listed also apply to PA. As she is receiving injections, she clearly needs to increase the amount. Perhaps a set of loading doses again. Please have a re check at the symptoms list on PA site. Good luck with the GP.
I agree. The first thing as everyone has said is to start treating her hypothyroidism correctly. Given she is on b12 shots her b12 serum level is pretty low. How long before the blood work was her last b12 shot? It may help her to have the shots at least monthly. I doubt the GP in her ignorance will agree to that. The alternative is to have them privately.
B12 deficiency is a very common co morbidity of hypothyroidism- they are both usually autoimmune diseases. Curiously they have very similar and diverse symptoms and both need to be effectively treated to achieve well being when they present together.
Thanks for your reply ..I think the blood test was mid way between her b12 shot ..I know in the past when mum was due for her b12 she would get irritable and tired ...I think as a number of forum members have said ..I need to get access to her results to give me an overview of what she's had done and when. she's had pernicious anemia for many years and she was told it was because she had no or low stomach acid ..I think the hypothyroid diagnosis came a few years after that .
The symptoms might well overlap with Pernicious Anaemia, however with such dire thyroid blood test results, the first priority is to sort out thyroid. If thyroid is wrong, everything else is wrong.
Goodness your mother must be feeling grim bless her. Clearly an increase in levothyroxine is called for.
I note you spoke to the GP about PPI and low stomach acid. Like your mother (although only 72) I have low stomach acid, hiatus hernia and Barrett’s oesophagus, I have been taking Omeprazole for over a decade. I can’t cope without it. What does confuse me is why Gaviscon especially all the time as you say. Hopefully you can persuade her to use a dossett box or two and split meds accordingly. Say levo in one by bedside and other in another kept in the kitchen.
Ask the GP about her kidney results and if perhaps another high blood pressure tablet might help. Additionally Losartan is helpful for those with early CKD . I was prescribed when close to stage 3 and no noticeable deteriorating since I started these some years ago.
It seems your mother is obviously keen to talk to the GP about all issues during a visit and so your questions are not being properly addressed. Could you maybe email the GP before next visit with the issues that need looked at , hopefully the GP will then focus more on that.
thanks for your reply, she is feeling very poorly still , we were at the hospital three times this week , and I've just spoken to an out of hours doctor this morning, interestingly his advice is 10mls gaviscon 20 minutes after each meal, then 20mls before bed , then 20 mls during the night is she starts choking. Gaviscon is the go to for anyone with a hiatus hernia that they cant do any surgery.
Omeprazole. I've read so much about the drug that I didnt like, I guess as my mum was to,d she has little stomach acid which led to pernicious anemia , I dont see the logic in reducing it further, as I feel food needs acid to break it down etc.
Im probably more of an advocate of natural ways to solve issues rather than prescribed drugs, I managed to get my father down from 8 prescribed drugs to 2 and ive seen a lot of improvement. But I acknowledge we are all different biologically , and thats very much evident in the posts I read on this forum.
I agree wholeheartedly that I need to consider a better way for mum to communicate her range of symptoms to the GP. I am going to delve further into the kidney issue, and see what comes from that. Thank you once again for your input its very much appreciated.
Don’t we all get to hear a huge variety of explanations from the NHS these days? I have never heard of Gaviscon as the ‘go to’for HH. I have now seen two different consultants and at least 10 doctors and not one has ever mentioned Gaviscon. My last endoscopy was less than a year ago and suggested no new problems. Everyone thinks I need to stick with Omeprazole which the first consultant’s prescribed as a result of HH and Barrett’s, no one ever suggested changing it. I decided myself once to come of it, angainst GP wishes never again . Maybe it’s because your mother has chocking issues ?
Glad you’ve managed to improve your father’s health. I hope things pick up for your mother.
I think we do get different advice from the NHS ..it's very frustrating ..when she went to the hospital last week ..and they did test after test and the result was ......more acid blockers ..which incidentally she was advised by the same hospitals gastro specialist not to take acid blockers some 8 months ago ..perhaps there is a difference in NHS areas
So sorry to hear about your Mum. On the hiatus hernia/omeprazole/gaviscon side of things a good book which helped me a lot is The Acid Watcher Diet by Dr Jonathan Aviv. I've got a hiatus hernia as well. I'm told it's small but nevertheless can cause problems. By managing what kind of foods I eat I've avoided omeprazole etc and now only occasionally need a dose of gaviscon.
Thank you for your reply ..I will definitely get the book. .I really don't want her on acid blockers..but for the NHS they are the go coupled with gaviscon for any one with acid reflux / hernia ..she's tried this combo for the last three years ..and she still isn't right ..
Not sure about the status of her blood pressure, if its okay look into DGL(deglycyrrhizinated licorice) for reflux . Nature's Way DGL has a lot of reviews on reflux on Amazon. Also Reflux Gourmet (vanilla version)
If shes been on ppi for a long time there is a chance she has SIBO or gut dysbiosis. That could be causing the burbing etc. There is antibiotics and antimicrobials that can help with that. I prefer the antimicrobials
Personally with her levels, I would think she would benefit from ndt or synthetic t4 and t3. I had similar free t3 levels and came back to life after switching to ndt(erfa). Like her i was originally on 75mcg of T4 and ended up needing 150mg of NDT split into 5 doses a day. Mind you, it took about 11 months because of cortisol issues.
Poor thing must be feeling really unwell with those cortisol levels. I had a really similar blood cortisol levels a few yrs back and found adaptogens to be helpful
Hi ImaaanShe takes amolodopine for high blood pressure ..I tried to persuade her a few months back to try something more natural ( ubiquinol/ Beet root juice powder )she lasted a day .she checked her blood pressure ..it was slightly above normal ..she panicked went back to the amolodopine...
I've had a bottle of Dr bergs adrenal cortisol formula sitting around for the last three weeks ..but I'm scared to use it ..and yet I can see the distress the cortisol is having in her ..I read some older posts on here about adaptogens (DGL/ aswhaganda) and it seems down to individual biology ..I've not heard of reflux gourmet..( I'll look it up)..she's been on PPIs for three years ..but not consistently..SIBO is a concern ..but I'm kinda fire fighting at the minute ..getting her to calm down is a priority ..
I'd like to know how you got on with adaptogens ..what you used ..etc ? ..
Poor thing. My heart goes put to her. It's really difficult to stay on things when you're dealing with symptoms and scared of trying things in case they create more symptoms. I literally have a tear in my eye because I remember feeling like that.
For my adrenals, I took AOR Ortho Adapt (vegan version ) for many yrs. I took one pill and it helped lessen my adrenal fatigue symptoms somewhat. I was dealing with low free t3 and sleep apnea and it was a Godsend.
Since she has high blood pressure I wouldn't give her this unfortunately. I'll link a pic of the ingredients and maybe you can get one that has a similar ingredient profile without the licorice.
I have a post dedicated to SIBO that has a lot if useful info so have a look. Another thing I would I highly recommend is Ancestral Beef Organs for your mom. Pls look up Amazon reviews. It's been a game changer for me and many others. Also absolutely looooove their Beef Thyroid which contains t4 and t3.
Glad you mentioned Dr Berg because I just remembered his B1. Taking Thorne B complex plus Dr berg Allithiamine has been really helpful for my digestion and energy. Pls look at my recent b1 post as well. It might be helpful for your mom.
Thanks Imaaan ..I will look up what you suggest ..on the B1 front ..I occasionally give her the non fortified nutritional yeast ..do you think a specific supplement might be better ?
Also I'm petite and found taking anything above 250 of ashwagandha was too much. I've tried different brands and my body prefers the brand Purica ashwagandha. After yrs of taking ortho adapt I switched to taking dgl from nature's way and purica ashwagandha.
Another thing is to pls consider getting her magnesium glycinate. 330mg is my limit or it reduces my blood pressure. I take 200mg in the morning and 130mg at night
Mum is pretty small ..Dr bergs adrenal cortisol has 200 mg of ashwa.. it's just with her having so much involvement with traditional health professionals at the minute it's difficult because you get asked what she's taking ..apparently when she went the hospital this week my brother told me they told her that I shouldn't have been giving her apple cider vinegar ..they never gave any reason why I shouldn't be doing this ...
I have her a fraction of magnesium glycinate before bed earlier in the week ..but I guess it was too little ..I'm so wary to try what I feel would be beneficial ..in case she gets worse ..
Its understandable that you're weary. Nobody knows how they will react to something until they try . For her, everything needs to be done slow and steady with small increases. I was and still am like that. My body is on the sensitive side.
First order of business is she needs to get back on her 75mcg of T4 to get her TSH to drop down. I was absolutely sick with a TSH of 11 .Secondly, her adrenals are struggling and she needs support with adrenal cocktails and adaptogens. Everything else can come later.
The health professionals were probably concerned that the apple cider vinegar with the mother was making things too acidic and causing damage. What they fail to understand is that reflux can be caused by too high or too low acid production. Or dysbiosis like h plyori or sibo . If she isnt experiencing any burning or irritation of the throat and stomach then I wouldn't be too concerned. If she is then I would stop it. B1 helps create acid production so taking it might be more gentler in her case.
Also my doc suggested probiotics and digestive enzymes to help take the load off my digestive system.
I've been dealing with docs for over 20 yrs and if I just listened to them I would be in worse shape. They ignored my low free t3 for 20 yrs . Most know diddly squat about nutrition and supplements .
Personally things started improving after I had begun taking ndt. My body was crying out for t3. So throwing supplement and other meds may help but her body needs t3.
I agree with you ..it's trying these things and monitoring..prior to the ACV ..I'd tried the betaine HCl ( berg had a protocol ) I think my next step would have been to try a digestive enzyme with added ox bile ..but events have really taken over ... And yes the consensus from the community is restore the 75mg above all else ...
Took ox bile at the recommendation of my doc. She said it's good for digestion and t4 to t3 conversion. I made sure to take the lowest dose at 125mg from Allergy research group and it was helpful for some time but had to stop after it aggravated my gastritis. Same thing with betaine hcl. Took 50cmcg or mg cant recall and it was helpful until it made my gastritis flare up.
Forgot to mention that I have a hiatal hernia as well. Mine is small. I refuse to take ppi. I take an h2 blocker which is better than a ppi when I have a massive horrific gastritis flare up. I mostly rely on dgl, zinc carnosine and slippery elm gruel when I have flare ups and reflux. Also propping up the head of my bed helps with reflux.
I've given her zinc carnosine before ..and she uses a wedged pillow to prop herself up at night ..it seems to be the choking that's really causing her distress at the moment ..she starts to get that choking sensation ..then gets stressed which seems to make the choking worse...have u experienced choking ? ..and if you have ..did anything work ?
Its frightening and not fun to deal with so I feel for her. I have sleep apnea so I'm familiar with a choking sensation on a daily basis..lol. Also my very first hypothyroid symptom was a lump/choking sensation
Reflux can cause that choking sensation as well. Honestly the best thing that's helped me is dgl but even that doesn't take it away completely. Also I've noticed taking thymus beef , thymus kidney and blackseed oil help when I get reflux caused by histamine from foods.
As her microbiome and thyroid is balanced hopefully the choking sensation caused by reflux and hypothyroidism will hopefully improve
The video below may give other clues as to what can be causing her symptoms youtu.be/ifU0qQlFRAA
I have never heard of thymus beef or thymus kidney ..I just had to look it up ..do you take a supplement ( which one ) or as a food ?I tried black seed for one night ( again I got scared using it. )after watching Weston Child's on you tube say it was great for thyroid inflammation..and histamine in foods??? ..blimey that's another new one ..I've just started her on gluten free and dairy free ...
Can I ask ..did you ever get your thyroid scanned ( nodules ) ..or is this choking the thyroid expanding due to inflammation?
I'm awaiting her blue horizon microbiome test results ..so I'm hoping that may give me some insight into what she should eat
My fave combination is nutricology thymus, allergy research group kidney and Amazing Herbs blackseed oil. I found those 3 to be the most effective for lowering histamine
I've had ultrasound done and it showed thyroiditis and some atrophy
The choking sensation could be due to inflammation from antibodies or be due to the acid from reflux or a combination
I only got the tests via email on sat afternoon ..so I havent had the opportunity to speak to her GP ..I think you're right about getting a new GP ..but mums 90 ..she's set in her ways..this surgery is the one her family have used for decades ..my doctor is a whole lot better ..but I was only able to get into my doctor's practice because I worked in the area.
The plan is to digest all the helpful info people on the forum have provided ..get onto the GP asap to get the levothyroxine back to 75mg...book a private rain oendo ( who is also NHS) get them to write to her GP ..and ask them to refer her to the NHS endo ( the same person) and hopefully start to get a better service and access to a thyroid scan.
I understand about parents being set in their ways as far as doctors are concerned my mother is the same way and I really dislike her doctor and feel he chalks her issues just to being old (which is true) until its not … frustrating.
From a peer-reviewed medical journal called The Mayo Clinic Proceedings, an article titled "The Many Faces of Cobalamin (Vitamin B12) Deficiency":
"In case of neurologic symptoms or abnormalities, it is suggested to administer hydroxocobalamin, 1000 mg once or twice weekly for a period of up to 2 years, and the package insert for hydroxocobalamin has included these particular instructions for several decades. However, it is ill defined which neurologic symptoms or abnormalities require such intensive treatment. Clinical practice has shown that in a substantial number of patients seen in a tertiary care setting, injection frequency cannot be reduced after the initial loading regimen."
Thank you for your response ..I'll have a read of the full mayo paper ..I did a little reading a while back on b12 ..in particular what the NHS use for injection ..from what I recall the NHS use is very much inferior to what is given the USA ..I also remember reading that what is considered a normal range for b12 in this country was considered low on a number of countries
My only experience with comparison of hydroxocobalamin, used in Europe, and cyanocobalamin, used in the US, comes from people here on this forum. In the comments I have seen by people here who have used both, the most common comment seems to be that symptoms respond about the same to both.
I don't know anything about lab values in different countries, though my impression, perhaps erroneous, is that lab values are approximately equivalent internationally. The differences, as far as I can tell, tends to be between "official" dose frequency of agencies, etc., and dose noted as necessary by clinicians interested in controlling symptoms, with the latter indicating a need for more frequent injections.
It's interesting that the brochure packed with hydroxocobalamin indicates a more frequent injection schedule for patients with neurological symptoms. I use cyanocobalamin, and the enclosed brochure doesn't mention B12 deficiency with neurological symptoms.
I wish you rapid success in obtaining the needed treatment for your mother. It's especially distressing with B12, which is widely known to be nontoxic at any level, so that the greatest risk associated with B12 treatment is under-treatment, yet physicians routinely under treat B12 deficiency patients.
It seemed like a good user name at the time. I am from Wisconsin, in the US, and at one time, when the states had 4-letter shortened names, the shortened name for Wisconsin was Wisc. In retrospect, WiscGuy looks a LOT like wiseguy, which, not surprisingly, it is often mistaken for. It's a small matter to me, a nothing-burger, easy to laugh off.
If your mum has a thyroid blood test, make it as early in the morning as possible, around 8-9am as this is when the TSH is at its highest and fT4 and fT3 are at their lowest.
With impaired kidney function the clearance of thyroid hormones slows down, hence the reason doctors reduce the dose of thyroid hormone. The conundrum is that low thyroid hormones cause reduced kidney function.
Thanks so much for the time you've spent replying ..I will update on how we get along .I'm also waiting for a blue horizon microbiome test result ..which Im hoping will give some further insight,in the meantime..I'll be looking up all the links I've been sent and putting all the messages I've had from the forum into one doc so I can really get to grips with the infoTake care BB001
I agree it would be a good idea to do the burp test to check if she's got low stomach acid. But it might be difficult to get your mum to come off the high stomach acid medication whilst she feeling so rough. Sort out thyroid first, that's the priority.
You need to build up a track record of successful actions to give your mum confidence in what you're doing.
If your mum is anything like my mum, she'll only start to realise you know what you're doing when the endo suggests what you've been saying 🤣
Lol ..You hit the nail on the head ..if I tell my mum this is happening because of this ..she will literally agree with me ..but I know in her head she will be looking over my shoulder thinking that window could do with a clean ...it's not so bad at the moment because she's been so ill all over the weekend ..so she's all ears ...
This is useful ...making the link between hypo and swallowing ..I think another forum user could well be right that histamine in foods is causing an inflamed thyroid leading to choking .. I've started mum on gluten free and dairy free ..I didn't even know about food histamines
I have a histamine intolerance and for me it's not the same a difficulty in swallowing. Look at allergy UK website.
The difficulty swallowing could be an allergy. Drinking before and during eating can help. NHS GP can check via a blood test if she's allergic to wheat, milk, and eggs. She has to have eaten them as normal for the 6 weeks before the test.
Have you heard of molecular mimicry between gluten and thyroid? This is why going gluten free helps.
Im hoping the blue horizon microbiome test will give me an indicator re foods ...I did read something about the gluten mimicry ..and other people saying it helped them going gluten free ..I'm very much clearing the decks with her diet ..and see if it helps
You might find this an easy read to put it all into context. On thyroid medication and still feeling unwell? This blog post will help. From my own experience, I too found these things helped.
You've had a lot of really useful information. Can I just add one more thought.
Most doctors have minimal training in nutrition. They would not recognise a deficiency if it hit them in the face. Several years ago I consulted a nutritional doctor - long before anyone mentioned thyroid to me. Following his advice my health improved greatly. One of the things I remember him saying is that if you correct your nutrition then any medical problems will present more clearly.
That doctor is no longer available, but I went to another nutritionist more recently to check that my supplements are up to date. The professional body that I know about is BANT which is the British Association for Nutrition and Lifestyle Medicine.
and you can find a practitioner from this page practitioner-search.bant.or... which lets you find someone near you and your mother. You can then ring round and see who might be able to work with your mother.
I certainly have had a great deal of exceptional practical info from the forum.
I couldn't agree with you more about most traditional Doctors not being able to spot nutritional deficiencies in patients.
I'm not an advocate of the current health care model that it seems most GPs are locked into , pills for symptoms ..more pills for the side effects caused by the original pills and no attempt to investigate the root cause.
I'd considered a number of alternatives ( including nutritionist, ) to the traditional approach offered by the NHS ,simply because I didn't seem to be getting anywhere and it's difficult to break the belief system that the older generation have in their doctors,it's a considerable strangle hold.
I'm sure lots of people wouldn't consider a nutritionist alternative , but I would imagine that an NHS nutritionist might offer standard guidance compared to someone from the private sector.
When you say you get your supplements checked on a regular basis, how does that work ? , Are u arranging bloods / saliva tests yourself and getting interpretation from the nutritionist ?.
I was thinking how I was going to do this with mum and what vitamin/mineral tests are available to thyroid patients in the NHS. It would be great if there was one place to do all this at reasonable cost. As far as I've seen so far , coverage is patchy, but I've yet to truly delve into it.
Its always good to hear a recommendation from someone who has used a particular approach, and I will have a look at the site/list.
You take the list of symptoms and the nutritionist will decide what tests are needed.
I last had my nutrition checked about 5 years ago, but that was before I moved house and before Covid so I think it's time for me to check it again. So not very regular.
If you ring some of the nutritionists you can ask what they charge and approximate costs for appointment and tests. You can also get a feeling of how sympathetic they would be to the elderly.
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