Hi endo is referring me to mental health services as he doesn't know why I'm still not feeling well. Advice welcome on vitamin and minerals please. Nothing been given.
Symptoms - aches in joints, dry skin/dry eyes/dry mouth/dry nose, constipation, periods absent, pins and needles, dark circles under eyes, low concentration, tiredness, weight gain becoming uncontrollable, goitre, bruising, depression, feeling cold and having cold feeling to skin.
Ferritin *4 (15 - 150)
Folate *2.3 (2.5 - 19.5)
Vitamin B12 *162 (190 - 900)
Vitamin D total 20.5 (<25 severe)
If anyone could advise I would be grateful, thank you.
Written by
Ally29
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You are so deficient in all of your vitamins/minerals he has a cheek to refer you to the Mental Health. You also need a Full Thyroid Function Test and, if I was a betting woman, I would bet thousands of £s that you are on an insufficient amount of thyroid hormones.
The aim is a TSH of 1 or lower, with Free T3 and Free T4 in the upper part of the ranges.
If your GP wont do all of these, you can get those not tested privately. We have recommended labs.
I will add SeasideSusie to your post as she will also be horrified at your vits/minerals.
Are you aware that your blood tests for thyroid hormones has to be at the very earliest, Fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards?
Levothyroxine should be taken on an empty stomach with one full glass of water and wait an hour before eating.
I haven't had my Levo dose changed since 11 October 2017, to 25mcg based on below range TSH *0.03 (0.27 - 4.20) FT4 20.5 (12 - 22) FT3 4.0 (3.1 - 6.8) I had no overactive symptoms at the time.
Endo isn't competent to diagnose mental illness and would get short shrift from any psychiatrist after reducing your Levothyroxine dose by 125mcg and failing to diagnose severe vitamin and mineral deficiencies. I would write to the head of endocrinology dept. making a formal complaint against the endo,
In the meantime show your GP the results above.
Severely deficient ferritin may indicate iron deficiency anaemia. Your GP should do a full blood count and iron panel to check. Treatment is usually 3 x 210mg Ferrous Fumarate. Take each tablet with 1,000mg vitamin C to aid absorption and minimise con-stipation. Iron should be taken 4 hours away from Levothyroxine.
B12 and folate are severely deficient. GP should initiate B12 injections 48 hours prior to you being prescribed 5mg folic acid daily. Investigation should be done as to whether you have pernicious anaemia causing deficiencies. Symptoms are listed in b12deficiency.info/signs-an...healthunlocked.com/pasoc are the experts on PA, B12 and folate deficiencies if you need more advice.
Vitamin D is severely deficient. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a maintenance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vit-amin D should be taken 4 hours away from Levothyroxine.
Clutter how can doctors fail to detect severe deficiencies in vits/minerals? I also know from past posts many have been given a diagnosis of mental health issues.
It makes me so angry that doctors tell patients they have a mental health problem when they so clearly have a physical health vitamin deficiency that has not been addressed and most likely not enough thyroid hormone either. It's outrageous that the Endo has reduced your thyroid hormone from 125mcg to 25 mcg. What is wrong with these Endos? They're simply dangerous messing about with people's health.
Your FT3 and FT4 were in range and you had no symptoms of hypothyroidism so why did the Endo reduce your dose? Not only that but levothyroxine should only be altered in increments of 25mcg at a time, testing after 6 weeks to check levels. Sudden big increases and decreases make us feel really unwell.
I hope you do make a complaint about your care as it's irresponsible to reduce your dose and leave you with untreated vitamin deficiencies. Your iron is below range and no doubt your reduced thyroid hormone dose has contributed to reduced vitamin levels.
Tell him you've taken advice from the NHS Choices for help/advice on thyroid hormones.
They are so poorly trained that most on this forum could set up help/lines which this forum is - a 'help' because of the parlous situation which has occurred due to Endocrinologists/Doctors, in the main uneducated in the purpose of thyroid hormones.
The 'Parlous Situation' is a statement made by a doctor who said that the patients are put in this situation due to the guidelines and adherence to the TSH alone.
Well shaws horrified doesn't describe it, there were two Fs and an S in my first thought.
Ally29
I thought I'd probably seen and read it all on here, but whoever ordered these tests, be it your endo or your GP, if they can't see a problem and think you need referring to mental health services, then they really do need their license taken away and are in need of mental health services themselves.. A blind man can see you have dire results, for goodness sake they're all below range!
Make an urgent appointment with the best GP in your practice, take these results and mention the following.
Ferritin *4 (15 - 150)
Ferritin is so far below range it's almost non-existent. Low ferritin can suggest iron deficiency anaemia and you need a full blood count and an iron panel doing immediately. If iron deficiency anaemia is confirmed then the treatment is 2 or 3 x ferrous fumarate daily and if prescribed take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.
Your doctor wont know but for thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You need an iron supplement and as your level is so low you should ask for an iron infusion which will raise your level within 24-48 hours, tablets will take many months, in fact I would insist on an iron infusion.
You can also help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
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Folate *2.3 (2.5 - 19.5)
Vitamin B12 *162 (190 - 900)
You are folate and B12 deficient. Check here for signs of B12 deficiency b12deficiency.info/signs-an... then please go and post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc quoting folate/B12/ferritin result (iron deficiency anaemia information if you already have it) and mention any signs of B12 deficiency you may be experiencing.
You will most likely need intrinsic factor antibodies testing, you could very well have Pernicious Anaemia and may need B12 injections, you certainly need folic acid prescribing for the folate deficiency, but that must not be started before further investigation has been carried out and B12 started.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
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Vitamin D total 20.5 (<25 severe)
As you can see, you have severe Vit D deficiency and you need loading doses of D3, see NICE treatment summary for Vit D deficiency:
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses, do not accept a prescription for 800iu, it must be the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Ally - as doctors know virtually nothing about nutrition, they will think anything in range is fine, they don't know about optimal levels being needed for us Hypos so you are going to have to keep an eye on your levels and if any prescribed supplements stop because you come back into range then you will need to buy your own to continue to get them to their optimal level and maintain it.
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If you have a supportive partner or relative/friend who can accompany you to your appointment, that would be a good idea as doctors are less likely to fob us off when there is a witness, and of course they can speak on our behalf if we aren't assertive enough.
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Once the GP puts the wheels in motion for addressing these dire results, I strongly suggest that you make a formal complaint for negligence against whoever has ignored them and said you need referring to mental health services.
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I see from your other thread that you have Hashi's and if your endo doesn't know that then my best advice is to run away as quickly as possible from this one, you really don't need him/her. It's the Hashi's that has trashed your vitamins and minerals as Hashi's and gut/absorption problems tend to go hand in hand and you wont be able to absorb any nutrients. You need to address the gut problems so check out SlowDragon 's reply to this thread for information and links that will help healthunlocked.com/thyroidu...
You also need to address the Hashi's. As Clutter has suggested, you can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
I think it is about time we collated and published the dire consultations that people have to put up with inexpert Doctors and Endocrinologists which makes me believe they couldn't possibly be qualified to treat any body or any person otherwise the patients lives are in danger. No doubt about that.
I was on the verge of retraining to be a doctor because of the poor service I’ve seen during my own journey and those of my patients!
Then I realised I could only do so much as a single doctor. What we need is to lobby and protest and highlight and campaign and spread awareness!
How can this still be going on?? Government campaigns to get people healthy eating- and doctors not having a clue when they see malnourishment!
Surely there must be lobby groups?
Thyroid Uk and others are so amazing in their forums- why haven’t they been able to make headway in the NHS? Surely targeting GPS and endow would be a start?
Please if you know of any lobby groups /campaign panels let me know x
The 'Institutions' want to be Masters of the Universe I think. Therefore any person who makes a derogatory statement about them are thought of as mischief makers. In fact it is the patients themselves who wonder why they cannot make headway in their illness but are prevented from doing so by too low a dose to keep 'results' in a range or ignorance or what is the purpose of thyroid gland hormones. They don't know anything I'm sure except measure the TSH and T4 and keep in range.
Before the introduction of levothyroxine and the blood tests our doctors were trained in diagnosing by clinical symptoms and prescribing NDT.
This is the attitude of the Professionals who have slowly been able to remove the original thyroid hormone replacement Natural Dessicated Thyroid Hormones which contained all of the hormones a healthy gland would have produced in favour of a synthetic levothyroxine (T4). I think Big Pharma had a lot to do with this thinking and the following was sent to the BTA by one of our Advisers and despite three yearly reminders before his death for a response - they never did.
Quite a few of our doctors who carried on making patients well and following what they were taught as students, were then pursued by the Organisations for not following the new 'rules' and were brought before the GMC or resigned their licences due to stress it caused.
One doctor in particular (deceased) and whose staff have been working hard over the past three years to collate all of his studies/research (I'll give you a link) appeared before the GMC several times and had 10,000 testimonials from grateful patients whose 'lives he saved'. Most of his patients believe it was the strain that caused his stroke which caused his death - one of his Admirers did a calculation of the odds of appearing so much before the GMC - and it was 4 million to 1.
You can also become a member of Thyroiduk.org.uk who are slowly, slowly working to change attitudes amongst professionals. They work behind the scenes and you can look at their site. Lyn Mynott who began TUK herself went through an awful time and couldn't get well on levothyroxine.
The Staff have been working very hard over the past few months about the withdrawal of T3 as well. Leaving only levothyroxine to be prescribed.
It would be great if you re-trained as a doctor. At least you'd be dealing with patients who had hypo as you've gone through it yourself - there's nothing like personal experience.
Thanks shaws! And sorry Ally, didn’t mean to go off on a tangent on this thread.
Lol@suffragettes. It may come to that at some point! But for now I think positive action and inclusion may still work if we can get to the right people.
I will look at all your links shaws and start a new thread/message you on this topic in future if that’s ok.
Forgot to say, you can say you have taken advice from NHS Choices recommended source for information about thyroid disorders (which is ThyroidUK, best not to mention internet forums, they don't like that).
Really?! Reallllyyyyyy?! I am so shocked at what I have seen recently on this forum that I can’t believe how inept some of these doctors are?!
Is this for real??
Unless these users are trolls or have some serious munchausens syndrome and faking their test results (and therefore do need a mental health refgerral ) what are these doctors on??!
Fantastic advice by the above users!
But aside from all the obvious - one of your symptoms is absent periods. Absent periods ?! (Are u old enough to be menopausal ?)
Does the endo not think this is a physical health problem? Does he think your mental health has stopped your periods ?
Because if you have then I’d sure like to know how to do that! 🤣
The troll reference...I don't think that's what was meant. Just that the behavior of endos and GPs is so unbelievable that it would be as easy to believe that everyone is making everything up. Which is obviously not the case as that is the basis for this forum. Chill a little Ally
We have seen a considerable number of posts recently from people reporting almost unbelievably bad treatment/management.
Despite years of experience here, some of these stories have plumbed new depths of "bad treatment". I think we hoped that we had actually reached the dregs and yet we are seeing more and more that are worse and worse. Most especially over the past few months.
Some are so bad we actually wish that someone was acting as a troll rather than suffering this much. I have had to wait a while, go back, re-read in order for the appallingness of the treatment to sink in. We either have to believe the posts as written - or accept that some of those providing treatment are utterly incapable of doing so. We ALWAYS end up believing the poster. If we really thought someone was trolling, we would in the end be able to delete their posts. We have never done so.
Your endo is an aswhole like mine. All they look at is TSH and no one bother to check the cause ! We are millions of people suffering from the same symptoms despite taking the hormone. Are we all crazy ???? Statically proven that if all of us still have these symptoms it means that the hormone does not eliminate them!!!! At least not for everyone! All they have to day is you are depressed or this has nothing to do with your hypothyroidism... what a coincidence then to meet all theses people with same struggle!!
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Vitamin and mineral results
Vitamin and mineral results
