Saying goodbye to you lovely people - no thyroi... - Thyroid UK

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Saying goodbye to you lovely people - no thyroid issues

meggiemog profile image
67 Replies

So I got my results today - I did my test after fasting for 10 hours and my results show absolutely no thyroid issues whatsoever! Weirdly my highest TSH values have always been after food in the afternoon (when it should be at its lowest) - just wondering if anyone has had results like this - I have issues with vitamin D and my ferritin is a very high normal - so armed with this I am going back to my GP.

ferritin 148 13-150

folate serum 8.14 >3.89

Vitamin B12 - active 47.4 37.5 - 188

Vitamin D 28.9 50-175

TSH 2.23 0.27-4.2

Free T3 3.91 3.1- 6.8

Free Thyroxine 15.1 12-22

Thyroglobin antibodies <10 <115

Thyroid peroxidase antibodies <9 <34

Glad I took the test though - my vitamin D level has never been checked.

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meggiemog profile image
meggiemog

Forgot to add the CRP HS 4.78 <5

Nanaedake profile image
Nanaedake

Your active B12 is very low, it may indicate you need to rule out pernicious anaemia. As all vitamins are low except for ferritin it could indicate toward further investigations. As you say, the tests have ruled out a thyroid condition.

meggiemog profile image
meggiemog in reply toNanaedake

Thank you for that. I have given the results to my GP and booked an appointment to discuss anyway - I feel a lot more positive now though as I feel like I am getting closer to knowing what is going on!

Nanaedake profile image
Nanaedake in reply tomeggiemog

You can get more advice on low B12 from the Healthunlocked Pernicious anaemia forum.

meggiemog profile image
meggiemog in reply toNanaedake

Thanks for that - just got myself some vitamin D tablets - been advised to re-test blood in 8-12 weeks - will look at B12 too

Nanaedake profile image
Nanaedake in reply tomeggiemog

Don't take any B12 until the doctor tests antibodies for pernicious anaemia and rules it out. If you have pernicious anaemia you will need the correct treatment for it. As your vitamin D is so low you will need loading doses and then a maintenance dose of D3. If in the UK, Your GP should provide loading doses of vitamin D3 depending on local CCG guidelines.

You also need to take the cofactors for vitamin D3. Visit the Vitamin D Council website to read about the co-factors.

MaisieGray profile image
MaisieGray in reply toNanaedake

With a Vit D level of 28.9 it falls within the NICE 'insufficiency' category of 25 - 50 for which treatment is maintenance doses only. Loading doses are given only for 'deficiency' levels of below 25.

LynneG profile image
LynneG in reply tomeggiemog

Vit D, drops are more effective. 2000iu per drop (nature's answer - judging by your serum level, you need many thousand iu per day.) If you have symptoms of any possible health issue you need to get your level up to a min of 150mmol/L. Look up the Vitamin D research Council /grass roots. They have published a chart correlation of levels and disease conditions protection. See Dr Hollis you tube presentation re doseage of vit D ( for immune system and organ requirements - a dose is reqd daily) If you have been prescribed vit D from your GP A) check it is

vit D3 not artificial D2. and B) it is a daily dose not a weekly tablet of 45,000iu. GP's prescribe a weekly dose usually (for cheapness) need daily dose. Listen to Dr Hollis presentation. You also need to take a good vit K2. Everyone should, as most are deficient in but if taking vit D you need good levels of K2. Kate Rheaumes book: The Calcium Paradox : a little known vitamin that could save your life. in addition Vit A&E from food.

As far as I am aware Thyroid stimulating hormone is produced when your brain detects that your thyroid needs a prod because it detects too little thyroid hormone. If your TSH is higher than 1 or maybe 2 (on no meds) then there is a problem with thyroid function. Check Functional medical doctors/clinicians Isabella Wentz who suffered from Thyroid issues, Chris Kresser, Dr Amy Myers MD (a doctor who ended up losing her thyroid because of poor diagnosis and medical practice and seeks to inform patients)

Also as Shaz says. Get rid of any fluoride toothpaste. Check the area where you live to see if it is a fluoridated area (maps online) or check with your Water Board. No bottled water in plastic bottles or food / baking in non stick , inc Teflon or any food stored in plastic - all hormone disruptors. Clean up your toiletries - no perfumes , deodorants again disruptors (use essential oils)

Don't panic, one step at a time, but you can do it x

greenmedinfo.com/substance/...

meggiemog profile image
meggiemog

Aww you are all so lovely here!

DippyDame profile image
DippyDame

Hello meggiemog ...

Who told you that "you have absolutely no thyroid issues whatsoever"

Your FT3 is very low and personally I would want to investigate this further although I suspect you will be told the result is in range, so "normal". Medics have a very poor understanding/knowledge of thyroid issues as is frequently evidenced here.

Your FT4 would benefit from being higher in range and may indicate that you are under medicated....or not as appears to be your case. Again, being somewhere in the range isn't necessarily good enough/normal, We are all individuals with different requirements

Your Vit D is abysmally low. Improving your nutrient levels may better support your T4 to T3 conversion and consequently raise your FT3.

If your levels improve but your FT3 remains low then you may need to look at the possibility of a genetic variant which impairs conversion....but that possibility is for later.

However, having said all that, the bottom line is, "How do you feel?". You make no mention of this. If you feel in good health then great, otherwise I'm not sure I would be ready to accept that all thyroid issues have been resolved.

Any further concerns...post again and someone knowledgeable will offer help

Best...

DD

PS Just checked your profile and saw this " Have been really suffering with dog tiredness, absent mindedness and general malaise for at least 2 years"

These are symptoms of hypothyroidism...I suggest you need to first trial levothyroxine.

Your GP is not being helpful....stay with us!

meggiemog profile image
meggiemog in reply toDippyDame

Awww I just don't know - it has been one thing after another. Some days I don't feel so bad - other days I can barely function! If you wanted me to say what was the worst symptom - I would say the hearing loss that has upset me the most. Everything else I can pretty much deal with.

DippyDame profile image
DippyDame in reply tomeggiemog

OK...so you don't feel great. Sorry to hear that but don't feel you have to put up with symptoms which reduce you to being barely able to function.

Your hearing problem isn't causing that....something else is i.e. poor thyroid function

Many of us have been there and know how tough that can be.

Retest after you have addressed the nutrient issues, hopefully your FT4 and FT3 will improve. If not I think you need to find a medic who understands thyroid issues because this one is struggling if he /she insists that you "have absolutely no thyroid issues whatsoever".... thay are not joining up the dots!

Without proper treatment your symptoms are likely to get worse .been there!

Your gut issues are likely to impair nutrient absorption....and low nutrients impair thyroid function.

Good luck for your appointment.

meggiemog profile image
meggiemog in reply toDippyDame

It was actually medichecks doctor who said I had no thyroid issues whatsoever - not my GP. He has been extremely helpful. I have got to get vitamins sorted and see where I go from there. I find it very interesting that my thyroid levels are always out of whack after eating and not fasting - which makes me think of allergies and malabsorption pushing the TSH level up - but I can't find anything on that!

Treepie profile image
Treepie in reply tomeggiemog

Medicheck doctors are GPs and have as little or as much knowledge as other GPs on the thyroid ,mostly the former.

in reply toTreepie

Exactly! I just had a Medichecks' thyroid test and the comment focussed on the TSH being slightly below range. Even though I still have obvious hypo symptoms. But most of us here have learned to interpret our own results so know that TSH is not a reliable guide to the success or otherwise of treatment.

Not always the doctor's fault, as they are often badly taught, and/or influenced by the prevailing (false) dogma about TSH etc.

DippyDame profile image
DippyDame in reply tomeggiemog

Medichecks doctors are GPs and can be as clueless as any other medics re thyroid issues.....same training!

They generally focus on TSH which is not helpful.

This paper (link follows) is written by a team of eminent researchers in the thyroid field....amongst them one of TUK's advisors, Dr John Midgely aka Diogenes. I gave a copy to an endo who insisted my TSH was unsatisfactory...he didn't mention TSH again!

bmcendocrdisord.biomedcentr...

I hope your GP's guidance proves helpful. I had a lovely GP who was otherwise an excellent practitioner but by her own admission did not have the training to treat my thyroid problem. I shared my route to self medication while we both learned more.

Not all medics are as honest, open minded and ready to acknowledge that they do not have a panacea for all ills!

As a result I arrived here in desperation, barely able to function, and getting increasingly worse. I am now recovering thanks to this forum and much personal research.... and that endo has now conceded that I'm doing what is best for me.

We are all different with different needs but most medics insist on a tick-box regime.

I'm not suggesting that you are seriously ill/ that your situation mirrors mine but without correct intervention that is a possibility. Have your symptoms increased over the two years you mention?

I would suggest that you have many symptoms of hypothyroidism and addressing your nutrient deficiencies alone is likely to help but not alleviate those symptoms.

thyroiduk.org.uk/tuk/about_...

Here we are all patients who have been -or are -travelling a very bumpy road to recovery along which we have made many important discoveries. Medics so often fail to join up the dots, in truth many do not even recognise those dots.

I offer this rant only because, given your background, I fear the latter!

Having read all the replies to your post are you still sure that "you have absolutely no thyroid issues whatsoever"?

You will get no better thyroid advice than here at TUK....I can vouch for that

Wishing you better health

DD

mountainice profile image
mountainice in reply toDippyDame

Hello, I am trying to get a hypo diagnosis. Have many signs and symptoms - no-one is joining up the dots but sending me for every test and person imaginable, including a psychiatrist (!) . I clicked on your link. I read a lot of it but it is long, so I scanned a lot and it just makes my head fuzzy. In your text you said:

'I gave a copy to an endo who insisted my TSH was unsatisfactory...he didn't mention TSH again!'

Did you mean 'satisfactory' not 'unsatisfactory'. I was sent to an endo who said no problem with my thyroid, but he didn't actually Iisten to any symptoms at all and is arranging a gastro for stomach probs and a psychiatrist at a 'Tired all the Time Clinic' as he said I have 'health anxiety'. I am seeing a private endo next and am writing a letter ahead this time.

DippyDame profile image
DippyDame in reply tomountainice

As I saw it the endo took on board what is written in that paper and saw no point in pursuing the TSH issue....he learned something I hope!

Many of us can empathise with your situation which is why we have come here for effective help.

If medics were up to speed on thyroid issues this amazing forum would not exist!

Sorry if you found my post too long....I'm afraid there are no quick/instant solutions.

We all understand brain fog.here . At one stage I couldn't read one page in a book...by the time I reached the bottom I had forgotten what was at the top!

Many of us have been shunted from one consultant to another....

I suggest you start a new post and include any resent results you have, including lab ranges. If members have that info they can offer advice

As far as I am concerned health anxiety is a cop out, it is the consequence of poor diagnosis, poor treatment and inappropriate medication. It means nothing and tells you nothing.... but passes the buck back to the patient.

I told one doctor that I would not give up until I found out what was causing my ill health and totally rejected her implication that I was neurotic. Her response....best to do what doctors advise. We all know how that can end!

Like many here I researched, learned, gained confidence and took control and I'm now recovering well but it takes time, determination and patience....not easy when you can barely function!

Sorry....getting wordy again!

With the right support you will improve.

I hope your new endo will offer that....

If not there are many experienced and well informed people who can....my trust in medics' knowledge of thyroid disease is almost nil!

Good luck

DD

PS ...just looked at your profile/recent results.

You are hypo and should be medicated.

Greygoose has already offered help...her advice should be taken

mountainice profile image
mountainice in reply toDippyDame

Hi, your posts are fine, it was the link I found long though I did get the gist of it. Thank you. I am just no good face-to-face with anyone - this is not a new thing, I have always, my whole life, had trouble with listening and verbal skills, but writing no problem. I hated story time in the infants ! I still don't know how to convince the doctors though. I went back to the GP but no result at all. She said we must try and joint up the dots - go to the psychiatrist 'Tired all the Time' clinic, see the gastro, go to the private endo, follow-up appointment with the geriatrician. In my opinion, from everything I know about myself, I have already 'joined up the dots' - it's just that the doctors haven't !! What a waste of NHS money too.

DippyDame profile image
DippyDame in reply tomountainice

When I was brain fogged (like you I much prefer to write!) I wrote down every thing I wanted to convey and handed it to my then GP. I started my notes (keep them concise) by explaining that it would give her a clearer idea of my situation than if I spluttered my way through an garbled explanation forgetting a lot of what I wanted to say....and saving us both time

I sat while she read it carefully we discussed the content and then she scanned it into my notes.

I continued to give her written updates once I started to self medicate. Sadly family circumstances meant she moved away by which time I had taken full control of my thyroid care which involves large doses of T3-only....a long story.

Not easy but personally I would insist/plead if necessary that she offers you at least a 3 month trial of Levothyroxine.

Her duty is "first do no harm"....is she convinced that by keeping you undermedicated when so much points to hypo that she is achieving this.

Your TSH is too high though she will probably deny that.....so use the paper I suggested to meggiemog above, it explains this, and underline the salient points.

Take a copy of the list of hypo symptoms I posted,, underline your symptoms and give it to her.

Her idea of joining up the dots is more akin to throwing a handful of seeds and hoping they land on a patch where they might germinate!!

Do you have someone you can discuss this with and who can accompany you to appointments. They don't need to say anything but their presence makes a difference. My husband came to my endo appointments...only had 2!

I agree....so much money and time is wasted as a result of poor clinical evaluation.

Incidentally I've just had a CT colonoscopy (No results yet) and I suspect my gut issues are the result of decades of non diagnosis followed by the undermedication of complex thyroid problems.

These problems started nearly 50 years ago and only now am I discovering why!

I'm not sure if this is any help but I discovered that I had to force myself to take my courage in both hands, listen to my body and quietly and politely stick with what I had learned and come to understand/believe.

You have made a good start....you have joined up the dots.

We are all here to help.....post as many questions as you need to.

mountainice profile image
mountainice in reply toDippyDame

Thank you so much, you are so reassuring, I feel quite emotional. I have so many on that list, plus Dupuytrens contracture (diagnosed) and De Quervais Tenosynvitis (diagnosed) and Raynauds (diagnosed) - all in my records and which I have read can be linked to underactive thyroid. When I saw the first endo, we only seemed to concentrate on my stomach issues though I did mention dizziness and his reply - 'Oh, everyone gets dizzy'. Once I get a reply like that I just can't fight my corner. I always take my husband in with me now but it doesn't seem to help much. He does occasionally say things, though I tell him not to pipe up too much! Perhaps he should! Re the 'paper' link - it is very long, did you print it off and hand it over, or just the first page that had the conclusion on it. Thanks so much.

DippyDame profile image
DippyDame in reply tomountainice

You are making progress!

I printed off the whole paper...the endo won't read it there and then but if you underline anything you feel makes a point concerning you, point that out, it shows you are doing your homework and won't be readily robbed off.

The authors are highly respected researches so he can't dismiss their work as "rubbish off the internet"!

In a post 28 days ago you added this -

TSH 5.4 mIU/l [range 0.27-4.2]

Free T3 4.3 pmol/L [range 3.1-6.8]

Free T4 14.6 pmol/L [range 12-22]

TGAb 69 kIU/l [range <115]

TPO <9 kIU/L [range <34]

Your TSH is too high

Your FT4 is low

Tour FT3 is low

All indicative of hypo

Medics often fail to understand TSH It is suggested here that over 3mlU/l is hypo....the paper expands on poor understanding of TSH values.

I've had the dismissive comments too, mine was "oh, everyone gets tired". I've learned enough now to deal with that rubbish.

The duty of medics is not too dictate to you but to work with you. They advise. Many forget both this, and that they are as fallible as the next person. Some forget that we may not have a medical degree but that doesn't mean we don't have a brain!

I'm just a grumpy, cynical old woman as far as most (thyroid) medics are concerned....they live with the illusion that they have a super power. On this subject an old GP friend once said.....Oh, we're just like mechanics....for the body rather than for cars. He was a car enthusiast!

Just imagine that endo as a friendly car mechanic in greasy overalls and he will be more approachable!!

It's amazing how brave you can be when push comes to shove....

You can do it....it's your health.

mountainice profile image
mountainice in reply toDippyDame

that is so kind. Hopefully, it will give me strength too.

mountainice profile image
mountainice in reply toDippyDame

And so sorry, I hijacked this post I think.

DippyDame profile image
DippyDame in reply tomountainice

Me too I think! It tends to happen sometimes.

meggiemog profile image
meggiemog in reply toDippyDame

No matter 😁

DippyDame profile image
DippyDame in reply tomeggiemog

Ah good, thank you I was about to send you an apology.

So glad you're still here.

Take care

in reply tomountainice

I have a similar problem in handling confrontation, especially when feeling unwell and unable to think clearly. But I also have a good friend who is a retired nurse and won't stand any nonsense - even from doctors.

One final thought (this thread has become so huge it's difficult to navigate, lol). Ask for a trial increase of Levo (or whatever you need (The thread is so long I can't go back to check what you are actually on, or I lose my place completely!)

A clinical trial means that they can't blame you if it makes you worse, so they are more likely to risk it! You could even point that out if necessary.

mountainice profile image
mountainice in reply to

No, not on any medication. Trying to gey sorted.

in reply toDippyDame

"I wrote down every thing I wanted to convey and handed it to my ... GP"

Me too. It can take hours, though my concentration is better than it was. The main problem is cutting it down to brief bullet points that still convey what I want to say!

mountainice profile image
mountainice in reply to

I've tried bullet points, no joy. This time written a narrative letter when dates of symptoms began. Hope she reads it b4 appt Tuesday.

Shaz26 profile image
Shaz26 in reply toDippyDame

If a person is taking Biotin, that interferes with the results and can give the false results. Lots of multivitamins as well as hair supplements have it. Also, Floride in the water we consume also has an issue with the results. Google it for more details please. People living in the northern countries where we don’t get enough sun majority of the people are deficient in Vitamin D. We must take at least 2000 iu daily.

Nikkilps profile image
Nikkilps in reply tomeggiemog

Speaking from experience get that Vitamin D level up as a priority! I went from being a foggy headed sloth with complete lethargy sleeplessness memory issues and exhaustion to the original miss Zoomy so full of inner energy and a sparkling clear head- once my Vit D levels were brought up from 22 to just over 80 the difference was huge- sort that then review the rest of your bloods once that’s normalised ☺️

SlowDragon profile image
SlowDragonAdministrator

Vitamin D is far too low.

GP should prescribe 1600iu daily for 6 months

Local CCG guidelines

clinox.info/clinical-suppor...

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs.

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

healthunlocked.com/thyroidu...

Your Active B12 is very low. Anything under 70 is low and needs investigation

Suggest you retest thyroid 2-3 months time after working on improving vitamins

You may see TSH risen and FT4 and FT3 low......or improving vitamins may help Thyroid work much better

meggiemog profile image
meggiemog

I am actually asking my GP if my previous stomach surgery may be affecting absorbing vitamin D - I have big issues with my stomach - and they are way long running! I am going away for a week - so I have booked a chat with him on my return. In the mean time I am going to start taking a vitamin D supplement to see if it makes me feel any better.

Marymary7 profile image
Marymary7 in reply tomeggiemog

If after your stomach issues you have to take antacid like proton pump inhibitors this effects or depletes B12.

If you were taking any B complex supplements before your blood tests this skews results for thyroid tests because of Biotin and also gives false figures for B12.

Any supplements with these B vitamins in now will spoil chances of recognition of Pernicious Anemia or absorption problems.

Good luck.

meggiemog profile image
meggiemog in reply toMarymary7

I was on PPI years ago - but not for long as they made me feel really ill- I had really bad reflux and hiatus hernia - which was repaired about 5 years ago now. I still have digestive issues- I get constipated for days and then end up spending a day on the loo - but if I eat something that doesn't agree - it goes straight through me. They keep saying they can't find anything - but I think they might start taking some notice with these vitamin levels. A lot tied in with thyroid issues and that's how I ended up here. I have not taken biotin since I thought I'd screwed up a blood test a couple of years ago.

Shaz26 profile image
Shaz26 in reply tomeggiemog

I would also suggest to go to a good and experienced homeopathic or alternative/naturopathic doctor near you for your stomach and other issues. These medical doctors don’t know much in certain things.

Eyes-wide-shut profile image
Eyes-wide-shut in reply tomeggiemog

Meggiemog I’ve just been reading through your posts I’m struck by your hearing loss and tinnitus. I have Graves with raging antibodies. My thyroid function tests all come back much like yours - in range etc. Since Graves emerged, 10 years ago now - I flip between being well and being really really poorly. At these times tinnitus, hearing loss, vertigo and generally dizziness are so awful. I’ve just started a second treatment to damp down the autoantibodies and reduce inflammation. IV steroids for 12 weeks and this time they are adding an immunosuppressant in mid September. The treatment started in mid August, I’m about to have 5th injection. Alongside everything improving my tinnitus, balance and hearing have resolved. The doctors (ENT and Endo) don’t really know why but suggest that the autoantibodies that affect my eyes, would cause thyroid issues if I still had one, are attacking cells in my inner ear system causing the hearing problems. They’ve checked other more obvious causes and ruled them out. So it may be worth exploring an autoimmune cause for your hearing difficulties. I don’t have any links so add for you to read up about it. Not sure the doctors know that much.

I wish you all the best in getting relief. My recent episode lasted a year and completely incapacitated me. I’m now on the mend, there’s alway hope 🙏

Nanaedake profile image
Nanaedake in reply toEyes-wide-shut

I hope they checked that your B12 was high in range and your folate levels are optimal because tinnitus is one of the symptoms of B12 deficiency.

Eyes-wide-shut profile image
Eyes-wide-shut in reply toNanaedake

That is very interesting. The Endo I’m seeing (new one) is monitoring me very closely while I have IV steroids. They have found parietal cell antibodies in addition to very high Graves antibodies. I’ve been asked to stop all the supplements I was taking but keep with Selenium. My vitamin and mineral levels will then be measured again in October. Thank you for drawing my attention to B12 and folate

Marz profile image
Marz in reply toEyes-wide-shut

If you have Parietal Cell anti-bodies then it would suggest you have Pernicious Anaemia and will need B12 injections for life. There is an excellent forum here on HU for PAS - Pernicious Anaemia Society. I am shocked this has been missed. Have you had a Full Blood Count and Iron Profile ?

Ruthi profile image
Ruthi

When my numbers were similar to yours I was already showing symptoms of thyroid disease, and my antibodies were always normal! It all depends what your own normal levels are.

But given your stomach issues it wouldn't be my highest priority right now. Your B12 is way too low, range or no range. Your D is awful!

To raise vitamin D reasonably quickly you need to take 5000iu D3 daily in an oil capsule. And to ensure that doesn't upset calcium levels you also need to take co factors, magnesium ( loads of it, 500mg elemental), Vitamin K2, 500mg, and boron wouldn't hurt since it is such an important element for bones.

The best Vitamin D information is in the Vitamin D and Co factors UK group on facebook. The best B12 information is the PA group on HU.

If you get your D, B12, and folate up to optimal levels thyroid may well improve, and you'll feel heaps better.

High ferritin is often a sign of inflammation.

jgelliss profile image
jgelliss in reply toRuthi

Well Put Ruthi . Many are so frustrated on thyroid medication . Feeling up and down and wishful thinking that they are now totally healed . Not So . There are so many components that entails our thyroid meds to work *Optimally* . Many Dr's are not even aware or up to snuff about of all the aspects with our thyroid/thyroid meds and how to make it work well for our well-being .

I suggest for those who feel they are well and healed . Stay tuned and InTouch there is a lot more to learn .

waveylines profile image
waveylines

I think in your shoes Id focus on your low B12 and vitamin D first as both cause Fatigue and exhaustion amongst other symptoms. Then see how you feel. Am surprised that at a level of 28 your doctor wouldnt treat your low vit D level!! What have you bought to treat? Make sure it has K2 as well. You need to get it above 80 preferably towards the 100 mark.

Portia1974 profile image
Portia1974

I think pretty much everything else has been covered but I wanted to mention your ferritin which is actually almost over the top of the range ie a bit on the high end. It's unusual for ferritin to be that high through diet or even oral supplementation ESPECIALLY as you say you have gut issues. This could be a clue to something in your puzzle. Essentially, when the body believes it is under attack from an infection, inflammation, disease...it "starves" that threat of the iron it needs (bacteria needs our iron too) by locking all the iron in your body away (in ferritin) so the bacteria can't get to it. Thus ferritin gets elevated. Bacteria starves to death. Threat resolved. Body releases iron. But in this scenario the body is also temporarily starving itself (you) of iron while its locked away in its ferritin cupboards (ferritin is the storage protein of iron. Not iron itself). So you get all the symptoms of iron deficiency but because your doctor is only measuring whats in your cupboards (rather than whats in circulation and how well its being circulated to where it's needed) you'll be declared "fine" despite being iron deficient in real and functional terms. "Dog tiredness" is the hallmark of iron deficiency (as well as your poor vit d and sub optimal b12 and slightly struggling thyroid). Sooooo, that ferritin level is a bit too close to the top end not to warrant a closer look. Personally I would want a full iron panel and complete blood count and be looking in particular at Transferrin Saturation and TIBC (iron transport and circulation), CRP, ESR and WBC (Infection and inflammation) and Haemaglobin level (are you actually anaemic).

Just a thought . May give you some clues to what's going on....and they're all standard blood tests you can get with your GP (you may have even these results already. Although the transferrin saturation maybe not. But medichecks is of course another option)

Saying goodbye? Why????

Take a break if you want to, of course, but don't disappear altogether! :-D

"No thyroid issues" is obviously wrong, whatever the doctor says. Maybe it would help if you make a bullet list of your symptoms and how they affect your life and give it to the doctor. Ask for a trial increase in thyroxine. But it's probably best to get the vitamins and minerals sorted first.

I still felt ill when my TSH was just under 3. And when it got down to 0.01, with fairly high T3 and T4 I still felt hypo, with no definite symptoms of overmedication.

As someone said, we are all individuals.

meggiemog profile image
meggiemog in reply to

I have to get my vitamins sorted first then see what happens with my other levels. Just to have something to work with has given me heart. I was sick of shuttling backwards and forwards to health professionals and being told levels were normal and I should not be feeling the way I do. Would say to anyone who is worried about thyroid or thyroid type issues to get this blood check done - I don't know if I would ever guessed to do a vitamin D check - I am always going away for sunshine holidays as well as eating loads of D vitamin rich foods! I have actually sent a note to my GP with a copy of my blood checks asking him to look into why my body might not be absorbing this.

Apparently it is quite difficult to get enough vitamin D from food, or sometimes even sunshine, so most people in cooler climates need to supplement, at least in the winter. And of course absorption problems (common with hypothyroidism, as you know only too well!) don't help

If you do get a supplement from the doctor, (which you should) don't accept one with Calcium in it. First because you won't be able to take enough that way. Second, recent research suggests that a combined D3/Calcium tablet can increase the risk of cardiovascular problems such as stroke or heart attack.

My level was 36 nmol/L in November last year, not much above yours (had to get private test) and was prescribed a total of 800iu (25mcg) a day Vitamin D. That isn't nearly enough, and it had calcium in it, so I had to buy my own. With advice from here and a friend (who is mostly vegetarian, has lactose intolerance and takes 10,000 units a day) I took 4-8,000iu for several months, (4,000 wasn't enough) with K2 and magnesium to get the D3 into the bones and make it available. You have to take those with higher amounts of D3 - over 1,000 I think. The level came up to 66 by March, and finally well within range (93.9nmol/L) on a recent test. The top of range is 200, so that's OK. Now need to find out the best maintenance dose (2000 maybe?)

your crp level suggests inflammation, ideally it should be closer to zero. Have you had gut testing? And what is your diet like? X

meggiemog profile image
meggiemog in reply to

My diet is wide and varied. I love cooking and mostly make things from scratch. I can't eat highly processed food - makes me feel really ill. Pot noodles kill me literally! I am trying to discover what preservative I can't tolerate as I have eaten out a couple of times and ended up in the loo a few minutes after eating as it goes straight through. I would say due to my surgery I can no longer be sick - so that creates its own issues.

in reply tomeggiemog

the aip diet was the thing that helped me the most, maybe take a look into that 😊 have you also had food intolerance testing? And do you eat gluten/dairy and soy free? Those things can all be problematic for thyroid issues

MiniMum97 profile image
MiniMum97

An active b12 under 50 requires further testing. Do not take b12 until tests have been done. See link...

biolab.co.uk/docs/vitaminB1...

What amount of vitamin d are you taking?

meggiemog profile image
meggiemog in reply toMiniMum97

I am taking 25s for vitamin D was told to take between 20 and 50 by Medichecks. Not touching B12 until I talk with my GP in a weeks time ( as I am on holiday). I have read it's not wise to supplement this without getting advice.

MiniMum97 profile image
MiniMum97 in reply tomeggiemog

25iu? That’s really low and you are only just over the “deficient” level of under 25. Nice guidelines are 300,000iu over 6-10 weeks as a loading dose if deficient and 800iu as a maintenance dose daily or if insufficient.

However I take 5000iu every other day as a maintenance dose and that seems to keep my levels up to around 100 which is about optimal I understand. I took 5000iu everyday for 8 weeks to get my levels to optimal and then every other day since then.

cks.nice.org.uk/vitamin-d-d...

meggiemog profile image
meggiemog in reply toMiniMum97

I am cautious - that's all - its twice what it says I should be taking . Again I will be speaking to GP next week. I am also making sure I get outside - been in the garden today and eating things vitamin d rich (I love mushrooms!)

MiniMum97 profile image
MiniMum97 in reply tomeggiemog

You don’t need to be cautious. It will take weeks even with the doses I suggested. Personally the quicker I can feel better, the better (if that makes sense!!). You should retest in 8 weeks anyway to see how well you’ve been absorbing and to see if you need to adjust big you’ve overdone it (unlikely) you just adjust your dose.

MiniMum97 profile image
MiniMum97 in reply toMiniMum97

And how is 25iu double what you should be taking? Who has told you to take 12.5iu? Have you read the Nice guideline I linked to, even if you were being cautious these say you should take a maintenance dose of 800iu a day.

in reply toMiniMum97

Unless it's 25mcg? Which is I think 800iu (these different measurements do my head in!) Which was what I was prescribed but can't take because it's with calcium. 800iu is still very low anyway!

birkie profile image
birkie

Hi meggiemog

Just to let you know I was ill for over 4 years with my thiyroid I was attacking mine on and off all my blood work kept coming back as normal..eventho I felt awful I had what I can only discribe as flare ups. Towards my last year when my symptoms were very noticeable my gp took bloods again at the end of Aug 2028..came back as normal he as much as told me to get on and stop bothering him as their was nothing wrong.. 18 days later I went back saw another gp who took one look at me and diagnosed me their and then she done full thiyroid bloods it came back as hyperthyroidism overactive thiyroid... How could that be I thought... So I have no faith in bloods so much as symptoms how come the first gp never saw them but the second one did HELL I knew I had it too over 4 years of sheer hell to get diagnose.. So keep on if your not well something is wrong.. I had to have my thiyroid removed I had earing problems to and now my right ear drum is suckered in and I'm deaf in that ear seeing ENT surgeon in Nov..

Good luck and stay with us as their is great advice on here.. 👍👍👍❤️

birkie profile image
birkie in reply tobirkie

Sorry 2018....😅😅😅

Marymary7 profile image
Marymary7 in reply tobirkie

You can edit your own post, just click on 'more ' at the bottom of your post 😀

Well, very few healthy people have a TSH as high as yours, so I'd keep an eye on it (and free T4 and free t3 are lower than ideal in range). That might be because of your terrible B12 and Vit D results. You really need to be tested for pernicious anaemia with that B12 result B12 (folate also isn't great)

meggiemog profile image
meggiemog in reply toAngel_of_the_North

Will ask to be tested for that - I gave my results with a covering letter - saying more or less - here's the issues- where do I go from here!

Tnhundley profile image
Tnhundley

please look into Pernicious Anemia. That's what I have, and I almost died from it. b12deficiency.info/signs-an... these are the signs and symptoms, your B12 is low. It mimics many other issues.

bookish profile image
bookish

I agree, please look into Pernicious Anaemia, esp. with chronic constipation and after stomach surgery.

vocalEK profile image
vocalEK

Furthermore, adequate serum levels of Vitamin D can also help to prevent cancer. My goal is to get mine above 60 ng/DL. cancernetwork.com/article/d...

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