HELP FOR DAUGHTER STILL NEEDED PLEASE !!

[janey1234]

I posted on behalf of my daughter 2 months ago with her Thyroid & Vitamin results and received a lot of great advice & information. She has been suffering for almost 2 years now with extreme fatigue, no energy, almost daily headaches, heavy periods, brain fogginess, not remembering events that friends have talked about, inability to walk far without getting painful legs. She had been going backwards and forwards to her uni’ GP but got nowhere (although we have since found out that CFS was added to her notes, yet nothing done about it). She has now finished uni’, moved home and is having to start again at a new practice. Here is a reminder of results…

May 2017 (NHS)

TSH 1.96 (0.27 - 4.2)

FT4 18.9 (12 - 22)

FT3 5.6 (3.2 - 6.8)

July 2018 (Medichecks)

TSH 1.59 (0.27 - 4.2)

FT4 16.6 (12 - 22)

FT3 5.35 (3.1 - 6.8)

TG ab 280 (0 - 115)

TPO ab 16.4 (0 - 34)

ACTIVE B12 53.1 (25.1 - 165)

FOLATE 3.84 (2.91 - 50)

FERRITIN 46.5 (13 - 150)

VIT D 70.1

Following on from the guidance from that post regarding her vitamins and the information about high Thyroglobulin antibodies, we went together to see her new GP who agreed to test her for Type 1 Diabeties & Pernicious Anemia. The GP also did a full blood count, thyroid again (pointless as just TSH & FT4) and said they would refer her to an Endo’ as they didn’t know much about high antibodies and ‘normal’ looking thyroid results or thyroid cancer. A few days after the GP appointment my daughter received a letter saying she had been referred to a Mental Health team too!!!!! (You can probably see where this is going…GRRRRR!!!)

I won’t bother posting her latest TSH & FT4 results as they don’t include any of the relevant bits we got tested 4 weeks earlier, plus they were done in the afternoon. They look idyllic but I know they don’t show the whole picture.

Intrinsic Factor & HA1c test came back as negative (I understand the unreliability of this test). Nothing was highlighted in her FBC, although I did note her Ferritin was 22.2 (10 – 291). Her Ferritin has been low but in range in the past with a good looking iron panel and it was only when it dropped just below the bottom of the range that her GP back then prescribed Ferrous Fumerate. An iron panel hasn’t been done this time.

We haven’t gone down the supplementing B12 or Folate route yet as we know this can skew results. I have posted on the Pernicious Anaemia forum regarding her Active & more recent Serum B12, Folate & Intrinsic Factor results and am awaiting their guidance. Meanwhile, she has started again on the Vit D 3000 spray again with K2 Mk7, etc to bring her levels nearer to 100 again.

My questions are.

1. Assuming the B12, Folate bits get addressed but all of her symptoms remain,…when she eventually sees an Endo’…can they prescribe Levothyroxine to help her based on her high TG antibodies alone or does she have to suffer further while waiting until it affects her TSH, FT4, FT3 levels?

2. Does she need a full iron panel done again based on her low Ferritin level?

It’s very distressing watching your 21 year old with the world at their feet unable to function. She should be having the time of her life.

As always…thank you

[HughH]

T3 is the active thyroid hormone which regulates almost every cell in the body and Free T3 is the best measure of it.

Your daughters symptoms indicate hypothyroidism but her Free T3 is above the midpoint of the normal range which means more than 50% of the population have lower Free T3. She is therefore not hypothyroid. You and your daughter possibly have a genetic thyroid condition - thyroid hormone resistance, also known as impaired sensitivity to thyroid hormone. This condition requires very high Free T3 levels to overcome the resistance and the recommended treatment is a single daily dose of T3. You are however unlikely to find a doctor who will help with this.

[janey1234 in reply to HughH]

Well if it's T3 she needs then we're doomed 🙁

[HughH in reply to janey1234]

You are not alone in feeling doomed. Many people on this forum have spent years, seeing various doctors and alternative practitioners with no improvement. It was only when they took control of their own health, making use of resources such as the Thyroid UK website and this forum that they were able to recover their health.

I know how daunting it can feel but for the sake of your daughter and yourself you have to keep going.

[janey1234 in reply to HughH]

oh I know...I have the T-shirt 😂 TUK have been my life support for the past 2.5 years. Thanks to the advice and guidance I have received I am in a much better place than I have been for years, in fact even better than before my diagnosis. I have also learnt so much and have taken back control over my health & wellbeing. I think my daughter will probably end up going down the same route of self help. Because her TSH, FT4 & FT3 look excellent but high TGab bodies (I had high TPOabs instead & dire other results) I have been thrown a little by what to do ... but now we are armed, ready to fight and if we fail with the GP we will succeed thanks to TUK. 😊

[Jazzw]

Well, she has Hashimoto’s, so it’s going to need keeping an eye on. But at the moment her thyroid results are looking pretty good. So I’d say it’s going to be about getting her Vit b12 and iron levels sorted first of all.

So hard, isn’t it? xx

[janey1234 in reply to Jazzw]

It's a nightmare. If she had the high TSH, low FT4, FT3 AND the thyroid antibodies like I did at the beginning of my thyroid journey, then I would have known where to start and could have helped her. Our family is riddled with Hypothyroidies, although not one family member ever told me they were Hypo' until I was diagnosed. I have no idea if we all started with high antibodies and normal thryoid levels in the first place. I do think though, looking back, that a lot of my dismissed earlier 'ailments' over the years before my diagnosis were actually my thyroid failing. I don't want her to suffer needlessly.

I am hoping that we can just get on with supplementing with a high dose B12 sublingual and a good B Complex to raise her B12 & Folate and hopefully her GP will do an iron panel too to check on that Ferritin again.

🙂

[humanbean]

When did she have her last iron panel done? And have you posted the results anywhere?

This test is worth doing and doesn't cost huge amounts. It is sometimes reduced in price on Thursdays.

medichecks.com/iron-tests/i...

[janey1234 in reply to humanbean]

She was tested in May 2017. I know it's a long time ago but at the time her GP insisted her Ferritin was fine & didn't need Ferrous Fumerate. Her results back then were...

FERRITIN 18 (15 - 300)

SERUM IRON 16 (7 - 26)

TRANSFERRIN 3.23 (2 - 3.6)

TRANSFERRIN SATURATION 20% (15 - 50)

In Feb 2018, she was tested again and this time prescibed Ferrous Fumerate as her Ferritin had dropped below range.

FERRITIN 13 (15 - 300)

SERUM IRON 17 (7 - 26)

TRANSFERRIN 3.07 (2 - 3.6)

TRANSFERRIN SATURATION 22% (15 - 50)

I also have copies of her Full Blood counts if they are helpful. I'm sure I've read MCV & MCH being relevant to the iron panel. I have this info if needed. Thank you humanbean

[humanbean in reply to janey1234]

Any doctor who can claim that a ferritin level of 18 with a reference range of 15 - 300 is fine is utterly deluded as well as being a sadist. It is only 1% of the way through the reference range.

The Ferrous Fumarate (was it Ferrous Fumarate 210mg or some other strength?) that your daughter was prescribed - what dose was she put on i.e. how many times a day did your daughter take it? And how long did she take it for? Does she take a maintenance dose?

Anecdote : My iron was very, very low. I was prescribed Ferrous Fumarate 210mg (FF210), one tablet three times a day. I knew that my doctor would only prescribe enough for two months. I found out by accident when picking up my prescription of FF210 that I could buy it without a prescription. I also found out about private testing around the same time. I decided to pay to test my own iron-related levels and buy my own FF210. I've never regretted it.

It took me 22 months to get my ferritin up to slightly over mid-range. And even then my serum iron and transferrin saturation were well under mid-range. Before I started taking iron I suffered with repeated bouts of severe chest pain, so bad sometimes that I thought I was having a heart attack and called an ambulance. Once I had treated my iron for about 6 - 9 months the chest pain stopped completely and hasn't returned unless I allow my iron to drop a lot. But my doctor dismissed my low iron as a minor issue that was of no consequence to anyone. Chest pain is a known effect of severely low iron.

[janey1234 in reply to humanbean]

she was given 56 days worth of Ferrous Fumerate 210mg (1 a day). Am going to get her to book an urgent GP appt. Thank you @humanbean

[humanbean in reply to janey1234]

One a day is a prophylactic dose i.e. it is intended to prevent someone from getting worse. It is not going to actually treat someone's low iron. The maximum (therapeutic / treatment) dose of FF210 is one tablet, three times a day.

For evidence, see this link from the British National Formulary (BNF), which your doctor should have a copy of :

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drug/ferrou...

These are the ones I was taking :

multipharmacy.com/images/P/...

I also took some others that were the same product but a different brand. Be aware that you can buy FF210 and loads of other types of iron supplement online. The important thing with every iron supplement is the iron content. Each tablet of FF210 contains 69mg of pure iron, so taking three a day gives you 207mg of pure iron per day. You should consider this the maximum.

The doctor who prescribed only 56 tablets (less than one box!) of FF210 had no intention of properly treating your daughter's iron deficiency, did he?

[humanbean in reply to humanbean]

I should have pointed out...

Anyone supplementing iron MUST test their iron levels regularly. The cheapest test I know of is :

medichecks.com/iron-tests/i...

Occasionally, Medichecks will have a one-day special offer on this test on a Thursday and reduce the price, but it is full price today. Still good value though.

I found after a while that my iron and ferritin rose so slowly that I could reduce the frequency of testing. But when I gave up gluten my absorption of iron improved quite a bit. So don't get too complacent even if absorption is slow. Diet changes could change the absorption rate of iron and you would need to be aware of this.

You might find reading this thread useful :

healthunlocked.com/thyroidu...

[janey1234 in reply to humanbean]

Thank you. Unfortunately because my daughter was at uni' I couldn't be with her at each appointment to be her back up when things were either ignored or prescribed. Now she is home I have with her (only 1 appointment do far with new GP) but already I can see a familiar pattern arising that you, I and lots of people here experience

If there's not a tick in the column on a bloodtest page when it's out of range then nothing is done. Those levels scrapping along the bottom of a range are ignored.

Alas our timing isnt great now for getting GP help as my daughter is starting her first job in London on Monday so taking time out for appointments is going to be tricky. Keeping my fingers crossed she can be seen tomorrow to get things started. I am making a clear list to take with us...lots to sort in a 10 min appointment.

If we get nowhere we will do it all ourseleves using all the help Ive got here today.

A mahoosive THANK YOU 😊

[Josiesmum]

My daughter also had CFS and same symptoms (without high antibodies) following a severe bout of glandular fever. Following advice from here, I asked GP to test her cortisol and it was indeed very low (around 175, ref range over 400). This explained her symptoms but unfortunately no treatment was available. I put her on a Paleo Autoimmune (and gluten free) diet as she seemed to be reacting to everything, and various vitamins and minerals, and her health gradually improved over the course of around 12 months. She also had lots of rest and relaxation, but also tried to stay engaged with life, eg seeing friends regularly to keep her spirits up, as well as doing small amounts of gentle exercise/ yoga (anything more taxing would cause her to crash). It was a very difficult time for her emotionally being so unwell so if your daughter could access counselling that may be a benefit of a mental health referral.

I have no idea whether my daughter's experience is relevant to yours but it is something to explore. If you ask your GP for cortisol test it is important that blood test is done fasting and at 9am as the NHS reference range it based on this value.

Good luck x

[janey1234 in reply to Josiesmum]

Thank you for that. I will definitely look into that test. Interestingly enough someone recently posted on here a really good video that explained brilliantly how the thyroid, B12, Vit D, etc all worked towards the ulitmate goal of good thyroid health and I'm sure cortisol was mentioned as one of the final elements in the thyroid puzzle.

youtu.be/npl-3AEwjGM(Not working as expected?)

Maybe that's the bit that's missing. Bearing in mind she has just graduated from uni' and the stress that the last few years has put on her plus she's about to start her first job next week. You could be on to something Josiesmum .

Thank you so much for taking the time to reply... x

[SlowDragon Administrator in reply to Josiesmum]

Josiesmum

You can have Hashimoto's without ever having high antibodies

Has she had her vitamin D, folate, ferritin and B12 levels tested

EBV

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

[Cooper27]

I'm sorry to say this, but I went to my GP with test results that showed high antibodies but normal thyroid results, and she also referred me to an endo because she didn't know how to treat that. The endo refused the referral, as they said there was nothing to be done. It might not in your daughter's case, but it might.

I have benefitted quite a bit from working through Izabella Wentz's Hashimotos Protocol - it's a book with a 12 week plan to help those with Hashimotos feel better. It could be worth a try?

[janey1234 in reply to Cooper27]

I have a feeling too that the Endo appointment will either be pointless or cancelled beforehand. We are going to try and get an urgent GP appt to address her B12, Folate & Ferritin. If we get nowhere we will do it ourselves. 🙂

[shaws in reply to janey1234]

These are two informative links and I wish all doctors or endos were trained properly.

No wonder he cannot take new patients:-

hormonerestoration.com/

hormonerestoration.com/Thyr...

ormonerestoration.com/Fatigue.html

[janey1234 in reply to shaws]

Thank you

[shaws in reply to Cooper27]

Dr Toft - has written an article in the Pulse online magazine and statees that if antibodies are e present we should be prescribed, regardless of TSH. If you want a copy of this to give to your doctor (Dr T is physician to the Queen when she's in Scotland) highlight the part where he states that if antibodies are present we can be given levothyroxine. Email dionne below. Highlight the sentence.

[e-mail]

[janey1234 in reply to shaws]

thank you shaws

[SlowDragon Administrator]

Eating liver or liver pate once a week should also help improve terrible ferritin levels. Ideally she would be offered iron infusion. Iron supplements (ferrous fumerate) will take several months to slowly improve levels

Once she starts vitamin B complex remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D is too low. Dose needs increasing. Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you increase supplement for 2-3 months and retest. It's trial and error what dose each person needs.

Once you Improve level, very likely she will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk




Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...


betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Low magnesium can be problem when gluten intolerant

[janey1234]

Already tested for coeliac...came back negative but went GF anyway and has had huge improvements in digestive area. Slip ups have shown obvious reactions so we know, like me she is NCGS person.

She has started taking Vit D spray again , Better You 3000 plus K2 Mk7, etc...

as recommended in my last post and will retest againin 3 months

[Cooper27 in reply to janey1234]

My vitamin D was very close to your daughter's (67 last week), the dose I was recommended is 3000 IU spray twice per week. Every day would be too much.

[janey1234 in reply to Cooper27]

ok...thank you.

[SlowDragon Administrator in reply to Cooper27]

How much we need is extremely individual.

3000iu just twice a week is only 850iu per day. That's a conservative maintenance dose.

To improve levels you may need higher dose than that

With gluten intolerance she is likely to need reasonable dose. 2000-3000iu daily is not uncommon

Better You vitamin D mouth spray is good as avoids poor gut function

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

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

Retesting essential, ideally twice yearly via vitamindtest.org.uk




Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

[janeb15]

Hello, I know exactly how you feel. Your daughter's situation sounds very similar to my daughter's. We were in a similar situation with her when she was 21and it took us another 12 years to find the real cause of her problems, and it wasn't until we stepped off the thyroid train that we did so. It turns out that her ill health was caused by chronic infections which had dogged her and multiplied since she was 12 when she was diagnosed with ME/CFS. These infections affected EVERY area of her body including her thyroid function (dysfunction!!) and caused countless symptoms for which she was referred to countless "specialists". There are no thyroid bodies in this country who are the least interested in finding the causes of thyroid symptoms which it turns out can be merely symptoms of a much bigger problem. We had to travel to America to see a specialist in integrated medicine and in particular who specialises in complex chronic illnesses. In 2013 he discovered (through correct testing) that my daughter had Lyme Disease, a chronic HHV6 infection, Mycotoxin illness and various other associated problems due to not having been treated for most of her life. This was not the news we wanted to hear, but it was the start of her recovery. The Mycotoxin problem has now been eradicated and many of her symptoms have gone. She is now being treated for Lyme Disease (it is dangerous to treat them all at once) and this treatment is extremely unpleasant (pain, sickness etc.). However, she is now on the raod to recovery, and this would have happened much sooner if doctors in the UK were awake to these chronic infections. Unfortunately there is STILL no Lyme specialist in the UK, but there is lots of information out there now. How I wish that the thyroid community would also at least suggest these chronic infections as a possible cause of thryoid problems, instead of just suggesting that all that's needed is to ramp up vitamins/minerals/adrenals. That solution no doubt works for some, but there are many, many people for whom this does not happen and they merely feed the Lyme bacteria! We have found the help that my daughter needed, and I hope that you will too. If you want to contact me for more information I'll gladly help - just send me a P.M. Jane x

[janey1234 in reply to janeb15]

Thank you for your reply and what a long sad story for you daughter . My daughter was tested for Lyme disease earlier this month which came back negative. This wasn't following a recent bite, just my plea to her GP to help us find a cause for her symptoms. I should have mentioned this in my post.

I wish your daughter well x

[janeb15 in reply to janey1234]

Thank you for your good wishes. Are you aware that Lyme tests in the UK are extremely unreliable especially if you are not tested immediately after a bite? The Lyme Bacteria can hide in the body in different forms and not be detected in the blood. The correct tests are not used in the UK and consequently many, many cases of Lyme Disease are being missed and diagnosed as ME/CFS, depression and sometimes even MS. Unfortunately it is very important to have a private blood test done either from the USA or Germany and have a full medical history taken by a Lyme literate doctor of whom there are none in the UK. Jane x

[janey1234 in reply to janeb15]

No I didn't know...Grrrr. I knew it could be done too early. What a nightmare 😯

[janeb15 in reply to janey1234]

Yes it sure is a nightmare. The best source of information about Lyme Disease in the UK is Lyme Disease UK who have an excellent website giving details of diagnosis lymediseaseuk.com/diagnosis/ and symptoms lymediseaseuk.com/symptoms/ and they also have a a patient forum and newsletters as well as lobbying parliament for better action. NICE guidelines were produced this year to which LDUK were invited to submit their comments, but the guidelines turned out to be a huge disappointment. I hope you find what you're looking for. Jane x x

[janey1234 in reply to janeb15]

Thank you Jane. X

[riversc13]

Regarding the B12 and folate (I have Hashi and high Tg Ab), I find that Integrative Therapeutics has an excellent B-complex in active format. I imagine that fatigue is getting her? I highly recommend that supplement, as B vitamins are best absorbed taken together, and in the more readily available form. In regards to her ferritin, I used to consider a level such as hers as low (I am a nurse), but the following video changed my way of thinking for the whole ferritin issue. Definitely not something that mainstream is recognizing though...youtube.com/watch?v=in-mLxe...(Not working as expected?)

Also, with a level of vitamin D in the 70s, I imagine you are megadosing her. Please ensure that she takes a goodly amount of magnesium to activate the D hormone. I take about 200mg of magnesium in citrate, glycinate or threonate format (not oxide...it's garbage) 4x/day. Vitamin D utilizes a LOT of magnesium (necessary for 300+ processes in the body. I had arrhythmias from megadosing D, that's why I converted to cod liver oil instead) to convert to an active format of D that is bioavailable. I learned this through Dr. Carolyn Dean, the the renown magnesium doc. You can find out more here...drcarolyndean.com/2018/03/o...

Many kudos to you for taking such an active interest in your adult daughter.

[janey1234 in reply to riversc13]

Thank you for your reply. I will watch that video later ( in a rubbish internet zone at the moment). My daughter & I were both Vit D deficient last December and following the good advice here using the Better You spray with a seperate K2 Mk7 supplement, we managed to get our levels up to about 150 by March, so we then stopped completely rather than a maintenance dose. Her levels have dropped back to 70 so she has resumed the 3000 spray for now. I will make sure she includes the magnesium too...we have the big tub of Natural Vitality Calm powder. Thank you again x

[janey1234 in reply to riversc13]

I use Thorne Basic B Complex myself which is good too. We may have to down the route of fixing her if her GP wont x

[B12jab]

Hi I’ve just come across your post,your daughter sounds just like me bless her! Apart from me being 41! I’ve to paid for thyroid tests with medichecks all normal but high Tgb antibodies, it’s eorried me so much I’ve hardly slept the last two days,I too have chronic fatigue that is ruining my life,I could sleep my life away! The past year it’s fits a lot worse,I’ve had dizziness feeling weak and just so unwell,in August my ferritin come back low At 10,and I too have had awful heavy periods I guess maybe this caused the low ferritin I’m not in ferrous fumerate 210mg twice daily my ferritin rose to 39 but had since dropped to 31, so all My thyroid results with doctor come back normal,but I paid for the full thyroid panel with medichecks and it come back with just the Tgb antibodies high not Tpo I’m pulling my hair out with worry and have a thyroid scan next Saturday,from what I hear Hashimotos is generally Tpo high not Tgb alone? Isn’t it such a worry and bless you being your daughter I’d be the same if it were my daughter! What was the out come of the Tgb antibodies? Thing is we would not even know about these being high if we didn’t have them tested privately I wish I hadn’t had them antibodies checked! I do hope you have had some insight and all is well with her, my b12 was also low but in range at 266 I learnt that that is not an optimal level of b12 and that it should be around 1000 for well being! I e now started having the injections in a private clinic and by gosh they really help my brain fog low energy, I’d love to hear how your daughter is

Best wishes

Claire x

[janey1234 in reply to B12jab]

Hello Claire. We are still fighting with her doctors and quite frankly banging our heads against a brick wall.

1st GP didn't have a clue about the antibodies but agreed to refer us to an Endo. After 5 months, appointment came through only to be cancelled the week before saying her results were fine. They only looked at her TSH & FT4.

I begged GP to ask Endo to reconsider & at least scan her bearing in mind her TGab (which I have since got retested & they've gone up even more) & gave them the NHS links re antibodies.

She then got another appointment which we then had to cancel as daughter was out of the country and now here we are, waiting again for an appointment.

In summary GP have washed their hands of any symptoms we go in with. They have labelled her with CFS & Mental Health issues. We are praying an Endo will give in and see her soon. If not we will have to find out if we can go privately.

Meanwhile, with no help from the GPs, we have raised her active B12 levels with supplements, fixed her Vit D deficiency and are continuing to try and improve her Folate with the recommended B Complex supplements and (touch wood) we have turned a HUGE corner with her chronic fatigue.

I wish you luck with your scan. I shall 'follow you' to see any updates. I only hope we get a scan soon so we can all move on instead of living with all this worry.

xxx