Thyroid UK
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What would you do? Please help, so fed up :( also advice re: GP

I would really really appreciate some of your opinions on this.

I have been getting slowly more and more exhausted. I used to be a heavy exerciser (10+ hrs per week) until I gradually found exercise would leave me lying in bed for 2-3 days. I’m self employed and now unable to work due to exhaustion. I found out I had quite low ferritin and felt LOADS better taking iron but then my iron went high with ferritin OK but not great, so had to stop supplementing. I have been assuming it was low adrenal function as I had a cortisol test and all the symptoms but then looked into thyroid.

These are my thyroid results from a private Thriva blood test (July 2018).

B12 (active) 300.00 pmol/L (25.1-165.0 pmol/L)

Ferritin 59.1 ug/L (13.0-150.00 ug/L)

Folate 34.4 nmol/L (8.83-60.8 nmol/L)

TSH 2.02 mIU/L (0.27-4.3 mIU/L)

FT4 17.8 pmol/L (12.0-23.0 pmol/L)

FT3 4.82 pmol/L (3.1-6.8 pmol/L)

Anti TPO 92.5 kIU/L (0.0-34.0 kIU/L)

Thyroxine 92.0 nmol/L (66.0-181.0 nmol/L)

Anti thyroglobulin antibodies (TGAB) 18.4 kU/L (0.0-115.0 kU/L)

Vitamin D 84.7 nmol/L (50.0-200.0 nmol/L)

When I was still able to work and exercise but discovered my ferritin was low (Feb 2017) my TSH was 1.33.

I’ve started reading up a lot about treating Hashimoto’s but wondering whether I should approach the GP for a trial of levothyroxine or just try to get it under control with diet and supplements (as I am at the moment).

Any opinions would be GREATLY appreciated. My life is severely limited all I can really do is go for a 30 min walk most days. Can barely even do shopping and haven’t seen friends in over a year!

So fed up :(

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Your high TPO antibodies confirm you have Hashimoto's

But TSH is not high enough for most medics to recognise as an issue

FT4 is pretty good

FT3 is on low side

Are you supplementing B12?

How high did iron go and how long since you stopped iron supplements?

Are you on strictly gluten free diet or have you considered trying it?

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Thanks for your input SlowDragon! Yes I did wonder that about the TSH as it’s not technically high but since I felt better at 1.33, and was already sitting to feel bad at 1.33, perhaps I could need to be even lower?!

I am supplementing B12, 250mcg methylcobalamin in a capsule of B complex and 600mcg as BetterYou methylcobalamin sublingual spray.

I am relatively strict about my gluten free as it makes me feel tired and bloated for 2-3 days if I have it (it came up as a food sensitivity on a test I had). The only things I occasionally cheat on are a few breadcrumbs on things.

Let me check my iron results and reply again :)

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You could cut back on B12 supplements. It's now very over range. Perhaps just try the B complex on its own, or add one spray B12 per week

Gluten free does need to be absolutely strictly gluten free

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Ok cool, thanks. I can do that. Just out of interest though, do you know if it matters to be so far over range on B12? Like, will it actually make me feel bad or have a deterimental effect on anything?

Or is it just wasting good vitamins down the toilet?

I can be more strict on the gluten thing too. It’s only been a few small things that have slipped the net as I’ve been quite strictly doing low-FODMAP to ease symptoms of what I can only assume is SIBO (untested though).

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Having a high level of B12 is not harmful if you've been supplementing. High B12 only needs investigating if it turns up in testing and you've never supplemented.

Whether you benefit from having such a high level of B12 or are just wasting your money, I couldn't say. But you might find this link about high B12 helpful :

stichtingb12tekort.nl/weten...

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Thanks I read it and that’s very reassuring. Interestingly enough my DNA profile shows that I could do better with hydroxocobalamin than methylcobalamin as it can help with certain aspects of detox. I was thinking of making the swap. I’ll have a think about it but cut down the methylcobalamin for the moment and see how I fare.

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Iron results end of June 2018

T.I.B.C.

View more details

45.59 umol/L (41 - 77)

Transferrin Saturation

60.08 % (20 - 55)

Ferritin

53.1 ug/L (13-150)

Iron

27.39 umol/L (5.8-34.5)

Unsaturated iron binding capacity (UIBC)

18.2 umol/L (24.2-70.1)

In Feb 2018 my ferritin had been 24.

I felt way better while supplementing. I took Garden of Life’s Raw iron and then Healthy Blood after that.

They’re really gentle and also have added an probiotic and digestive mix in all their supplements. Don’t know whether those helped me too.

I only now have 3.5mg iron in my daily multivitamin.

Should I worry about those iron results?

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You might find this thread of interest :

healthunlocked.com/thyroidu...

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Thanks! Yes funnily enough it was VERY interesting and I found it earlier when browsing the forums for help. I get a bit scared about iron now with my level above normal especially since you can’t choose whether it goes to ferritin or iron. :( I find it frustrating actually as I felt so much better all of a sudden in March/April when I supplemented Garden of Life’s Healthy Blood. I felt like I had come back to life again.

I lose a lot of hair, always have, but I have a lot of it so it’s not noticeable. I understand this is a sign of less than optimal ferritin. I’m hoping that by stabilising everything else that iron and ferritin will eventually be in range?

I could eat liver once a week though, i don’t mind it as long as it’s not dangerous.

I’m just so fed up with the peaks and troughs. Just when I start to feel better I get worse again :(

I had really heavy and irregular (frequent) periods too so that hasn’t helped the iron situation. This month has been miraculously better though!! So fingers crossed that’s going to continue.

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It has been suggested that this imbalance problem of iron being high while ferritin is not is caused by a problem associated with the methylation cycle and a gene problem called MTHFR. Some links on the subject, which I've probably already posted on that other thread :

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/m...

drmyhill.co.uk/wiki/CFS_-_T...

And if you search for info on MTHFR you'll find more links than you'll know what to do with.

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I have been tested and have homozygous MTHFR

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Thanks for the links too, I had heard of Dr Sarah Myhill and Rich Von K but never seen that page on her website. It’s in an easier format than I’ve seen elsewhere so may be helpful for me :)

The thyroid madness page definitely made sense that (paraphrasing) perhaps I’ve got high serum iron but that it’s unavailable so I’m feeling low iron symptoms. I hope it’ll rectify itself gradually as I continue.

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I was in a similar boat to you, with high antibodies, but results not yet hypo. I've improved a lot after working my way through the Hashimotos Protocol, which is a book by Izabella Wentz. You might find it helpful for you too.

It won't fix the damage that's already been done, but it might help some of your symptoms.

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Thanks so much for replying. That’s so good to hear! Especially since I got the book about 3 weeks ago and have been gradually implementing stuff.

Since I was already supplementing I’ve had to mix it up a bit, but I’ve just started looking at the liver stuff and begun taking free form amino acids to support Phase II detox. I think I may have been supporting Phase I with supplements but not much of Phase II. She did say detoxing liver stuff could make you more tired so I’m hoping this could be a step towards longer term improvement.

What bits have you done and how long would you say it took you to feel better? Also how did you feel originally and what symptoms improved? Thank you :)

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I think I felt best during the adrenals phase, way more productive. It didn't have a huge amount of supplements, which was nice!

I started the protocol in January but near the end, I discovered I have candida in my gut. The diet for that is very similar, so I stuck with the AIP diet for an extra 3 months, and I'm reintroducing a few foods now.

My symptoms last year were: memory issues (I worried I was getting dementia they were that bad), brain fog, fatigue, brittle hair and nails, struggling to lose weight, IBS, tingling in hands/feet, stiff joints. Most symptoms went away, although I'm starting to get fatigue and poor memory again (but new test results I got today showed my B12 and vitamin D are a bit low again, which could explain this). My antibodies were within normal range again too :) although antibodies fluctuate, so that could be a fluke.

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I’m sorry to hear that you’ve had a return of some symptoms. I hope that can be easily resolved with supplements. I find B12 works very quickly to make you feel better! I can’t remember how long it took to feel better after low vitamin D but at least it has no side effects (for me anyway :) I find with any gut issues it’s best to have sublingual where possible. Can highly recommend BetterYou. Don’t forget your K2 alongside D3 :)

I know antibodies can fluctuate a bit but that is surely good news that you’ve come up clear for now! Well done.

The brain fog is damn scary. Luckily it’s mostly lifted for me now but I know what you mean, i would struggle to locate even the simplest of words in my head I was concerned it was going to be permanent, and also felt so self conscious talking to people as I kept having to stop to think of stuff.

Do you remember how you felt during the liver / cleanse part? I’m more tired than usual but hoping it’s a temporary clearing out stage leading towards bigger improvements.

How is your food reintroduction going?

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Yeah, the brain fog was the worst bit - I definitely relate with you! I felt so stupid at work, having to constantly stop to think of simple words. You'll have a moment where you feel on the ball again, it's a great feeling :)

I was tired on the liver protocol, but it was January, so just presumed it was time of year. The adrenals phase made up for it, although she wanted you to get 12 hours of sleep! 9-10 hours was plenty for me.

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Ha! I would LOVE to get 12 hours of sleep but I’m generally fine after 8. I used to get 8.5-9 hours when I was feeling 100%

I actually have turned the brain fog corner thankfully. Sometimes I even feel like my normal self but it’s just the energy that doesn’t last throughout the day. Some days I can wake well rested and feel chirpy like I’ll last all day but then by 2pm I’m rough again.

It really helps to know other people have got much better! And also good to know you felt tired during the liver bit, maybe it’s just necessary while all the bad stuff is leaving my body (I hope!!)

I wish I had discovered this thyroid issue earlier but hey, I was on the road to believing I had CFS (or depression if the doctor had her way!) so better late than never eh?!

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Is there any way that you can see a Nutritionist? This is what I would do if I had my time again, or was in your situation. I thought it was about trying to find the right doctor to give the right dose of the right medication, how wrong I was. Doctors and Endocrinologists just don't understand how the body works.

In the 12 years since I first had hypo symptoms I have learnt so much - take a look at Dr Mercola, Dr Josh Axe, Dr John Bergman on youtube or their websites.

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Thanks Chippysue. I could potentially see a nutritionist, but I have had food intolerance testing and cut out most of the things that I was reacting to, so was hoping that might be enough diet-wise in the short term.

I have certainly learnt a lot from the websites you mentioned! My doctor has never even enquired about my diet or nutritional status (vitamins / minerals etc.!)

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Doctors don’t learn about nutrition. A nutritionist would guide you with supplements too and further testing for parasites etc etc if necessary. Also homeopathy is amazing

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I second this - my nutritionist is the one who suspected thyroid issues in the first place, and she then recommended working through Wentz's protocol. The protocol is thorough enough that you can manage without a nutritionist, but it does help.

If you do decide to see someone, look for someone BANT registered:

bant.org.uk/bant/jsp/practi...

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Just out of interest sue, what did the nutritionist help you with that you didn’t already know?

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Mine does bioresonance too so we work at clearing metals and virus’s I didn’t even know I had.

As diet is crucial a nutritionist can guide what to eat and drink and which supplements to take. Ideally a well recommended one. Then they can arrange for stool tests, maybe liver flushes, parasite cleanses and more.

Functional medical doctors and homeopaths find root cause and treat the whole person.

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Thanks all! Yes I am definitely one for dealing with the root cause rather than patching up all the symptoms.

When I last visited my doctor I took a long list of all my symptoms hoping she would be able to tie up all the loose ends. There were about 10 things eg. Feeling tired, stressed, anxious, unusual skin breakouts, random period cycles every 14 days etc. etc.

Do you know what she said? “I can’t deal with so many things in one go, and you’d have to wait a few months until we would blood test for hormonal issues as it’ll likely resolve itself. Why don’t we start with your skin? I can give you a contraceptive pill as that should help”

THANKS! :/ That was literally the least of my worries.

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All just sound like Hashimotos - if she had twigged that, then she would just be dealing with one thing.

My monthly cycle has evened out since I started with the nutritionist, but it wasn't something we were trying to fix, it's just been a by-product of dealing with gut health and thyroid.

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I know! It’s not as if it’s some bizarre rare disease it seems so common a doctor should be able to recognise those symptoms.

When I mention thyroid issues to people they say “oh yeah my friend / partner / Mum has that” (I eventually noticed it myself as my boyfriend has it).

It should be one of the first things investigated when people feel unusually tired, and with a thorough panel of tests, not just TSH and T4.

I’m glad to hear your cycle has regulated. I just had a 41 day cycle (!) which I thought was due to starting on Vitamin B6 (as the P-5-P form) but now think it was likely due to eating flax seed every day.

On the plus side when it arrived it was a completely normal 5 day cycle rather than the ridiculously heavy 7-8 days of suffering I’ve experienced in the last 2-3 months.

Now I’ve quit the flax seed I’m hoping next time will be 28 days and normal! Fingers crossed.

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Criminal!!!!!!

The contraceptive pill causes most of our problems in later life!

So all that time and money at medical school and she doesn’t know that our body is all connected!

Unbelievable!

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I know, it would almost be laughable if it wasn’t so sad :( how would all these things be separate?!

I’ve only ever been offered the pill or anti depressants.

Luckily I’m 35 now and after all my poor experiences with doctors since the age of 18 I knew better than to take either. I’ve been off the pill for nearly 8 years and I’m so glad! I’d hate to have another thing in the mix to deal with.

I never really could find one that didn’t make me feel horrible in any number of ways after a few months on it. I do wonder now whether some of those symptoms were nutritional deficiencies since I now know the pill depletes several of them.

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Hi Foxtrot89 , I have had fatigue problems since I was in my early 20's , I will be 54 this coming September, I was diagnosed with Familial Adenomatous Polyposis Coli back in 2008 ( causes hundreds to thousands of polyps in the bowel and can turn cancerous , I had my large bowel removed in 2013 as the polyps had started to change , then nov 2017 I had my thyroids removed ,was told the thyroids were slightly enlarged and had nodules on them , again linked to the F.A.P , my TSH was 61 , then further tests the TSH was 11.7 , 7.5 and then the last one done 2 weeks ago was between 0.1 - 0.4 , the Levothyroxin I am on was started at 150mcg then went to 200mcg and finally this time reduced to 175mcg, I will have another blood test done in 8 weeks time. Unfortunately for me, I was due to have surgery for prolapsed discs lower back , but because the thyroid levels were abnormal the operation was cancelled , so now I have to go through the whole process again , referral back to consultant, then pre - op assessment, blood tests before I even have the operation .I still suffer with constant fatigue but I don't put it down to the thyroid issues , I think it has something to do with my Obstructive sleep apnoea , narcolepsy and cataplexy , I have had iron level problems quite a few times now and put on iron tablets ( always for 3 months ) , the lowest my iron levels went to was 7 , the last time my levels were low was after surgery to remove a tumour from below my right shoulder blade, was aborted due to complications , I ended up with a haematoma , so spent 10 days in hospital till the haematoma cleared up , unfortunately I lost a lot of blood which caused my iron levels to drop , so put on iron tablets for 3 months. Because I was constantly falling asleep I had to stop working ( was a live in carer for over 20 years ), I took it upon myself to stop working , I realised it was too dangerous to carry on as I was responsible for giving clients their medication at the right times, and the correct dosage . It was a sad day for me , but I knew it was for the best .

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