First time poster here. I have not been diagnosed with any kind of thyroid disease or dysfunction. In fact I am repeatedly told it's all normal. It may well be. But having recently discovered a GP's "normal" can be utter tosh (because normal and optimal are two different things and you can be in range but showing clear decline or be highly symptomatic despite normal serum etc) I wanted to get your views if possible; and any advice for further reading if you think
As background, I began reporting persistent fatigue in 2008.
Subsequently diagnosed in 2014 with B12 Deficiency (109 at it's lowest. Range 180-914 pg/ml) and now on lifelong quarterly injections but still symptomatic. Currently >1500.
Shortly afterwards diagnosed with Vitamin D deficiency (21 at it's lowest. Range 40-250 nmol/L) Currently at 73.
Persistently low in Folate going back to 2014 (Don't know before that as no record of testing). Folate over the past 4 years has been 6, 10, 9, 12, 11,6, 18, 7 (Range 4-20 ng/ml) and last week via Medichecks 6.56 (Range 2.91-50 ug/L)
Persistently low or deficient in Iron (Ferritin) going back to 2014 (Don't know before that as no record of testing). Ferritin over the past 4 years has been 5, 12, 8, 6, 8, 13, 11, 6 (Range 11-307 ug/L) and last week via Medichecks 15.5 (Range 13-150 ug/L)
Also from Medichecks last week:
IRON 7.38 (Range 6.60 -26.00 umol/L) and TRANSFERRIN SATURATION 12.28 % (Range 20.00 -55.00)
In terms of my thyroid function, tbh, my focus has been on my Iron, Vit D and B12/Folate issues. It is through researching these (somewhat obsessively to be honest but what are you supposed to do when what your Dr is telling you simply doesn't add up?!) that I have come to understand that there can often be a strong link/overlap between B12, Folate & Iron deficiencies and Thyroid issues. Specifically hypothyroidism and/or Hashimotos?? This has prompted me to look more closely at my thyroid bloods over the years. Every time I have been told my thyroid function is fine. I've come to realise that what the NHS refer to as "within range" is often scandalously sub optimal. So I thought I'd ask if any of you had any thoughts on the following thyroid result from the last few years and does this rule out thyroid issues completely:
May 2007 - TSH 1.31 - (Range 0.3-5.6 mu/L)
Jun 2010 - TSH 0.67 - (Range 0.3-5.6 mu/L)
Free T4 9 (Range 6.3-14pmol/L)
Jul 2014 - TSH 1.21 - (Range 0.3-5.6 mu/L)
Free T4 9.5 (Range 6.3-14pmol/L)
Apr 2015 - TSH 1.21 - (Range 0.3-5.6 mu/L)
Apr 2016 - TSH 1.48 - (Range 0.3-5.6 mu/L)
Feb 2018 - TSH 4.43 - (Range 0.3-5.6 mu/L)
Jun 2018 - TSH 2.56 - (Range 0.27-4.20 mIU/L)
Free T4 13.5 - (Range 12-22 pmol/L)
Free T3 3.34 - (Range 3.10-6.80 pmol/L)
My symptoms, which have been going on for years but got dramatically worse in the last 2 years are profound fatigue, musculoskeletal pain, nerve pain, cognitive impairment, massive weight gain in the past 18 months, significant hair loss in the past year, dry hair, nails & skin, ridged/brittle/peeling nails, racing heart, heart flutters, swelling of the arms, legs hands and feet, (basically "puffy" all over) sensitivity to light and sound. Pretty much always cold. I also wake up in the night at times choking and gasping for breath. And that's not to mention the depression and emotional "bleurgh" that comes as part of the package.
I have finally managed to get an appointment with a consultant haematologist so if there is ANYTHING you guys think I should be pushing to get tested for that digs a little deeper....I'd be so grateful for the advice. I want to TRY and make the most of this appointment because if I draw a blank again...I'm not really sure where to go from there. I feel at complete loss after 10 years of worsening symptoms and the last two in particular have left me in a place where I feel I can't cope with life like this anymore.
Sorry it's long.
And thank you in advance if anyone feels able to respond.
Px
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Portia1974
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Medichecks Thyroid or Blue Horizon Thyroid are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.
Food intolerances are very common too, especially gluten. So it's very important to get TPO and TG thyroid antibodies tested at least once .
Ask for ultrasound scan of thyroid too, not everyone with Hashimoto's has raised antibodies
Thanks for your reply. Yep they've ruled out coeliac and h pylori. (Cameras up and down both...well..you know🙈)
I am asking the haematologist about gastric acid levels as don't think that's been ruled out. Based on what you see there though...do you think the haematologist will even consider looking into thyroid? Have I got another battle on my hands ? Or am I barking up the wrong tree?
To be able to compare test results accurate, we need conditions to be the same each time. We always suggest booking tests for the first appointment of the morning and to fast overnight (water allowed, delay breakfast until after the test). Were your tests done under the same conditions each time?
Have you had thyroid antibodies tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)?
What are you taking for the nutrient deficiencies?
Only vitamin currently being addressed is B12. Not even convince the injections are working due to dire folate and iron.
GP has withdrawn vit D treatment as my levels are merely insufficient rather than severely deficient now.
I feel I'm in a bit of limbo at the moment. Crazy as it sounds I don't want to take anything ahead my appointment (mid August). To me the deficiencies are symptoms of something. I know I can potentially self treat/supplement the vit d and folate. The iron I have never been able to get into a good range through supplements or diet. Problem is, if I do that, I'm worried it will skew the results (like b12 supplementing for instance. Testing that is pointless now). Then I get sent on my way and we never get to the root cause...again. Kind of seeing this appt as my last chance saloon.
I have NEVER been asked to fast or have my tests early morning etc. But if they ever test me again I know to insist on it now. So one thing learnt already.
Not been tested for antibodies no. But do I have grounds to argue it based on my results? (There's always an argument. It's so exhausting).
As you are having B12 injections, you need daily good quality vitamin B complex. One with folate in not folic acid. That will improve folate levels and keep B12 higher between injections. Recommended brands are Igennus Super B or Jarrow B right.
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Vitamin D needs improving to around 100nmol. Vitamin D mouth spray is good as avoids poor gut function. Trial and error what each person needs to raise levels. Perhaps try 3000iu spray once day for 6-8 weeks and then retest via vitamindtest.org.uk
Look at importance of magnesium and vitamin K2 Mk7 supplements too when on vitamin D
Only add one supplement at a time or make one change at a time, waiting at least a fortnight to assess
Correcting low vitamins and trying strictly gluten diet and looking at improving low stomach acid, will either just help your own thyroid hormones work, or may push TSH higher so that thyroid problem is revealed and you can start on Levothyroxine
Have you been tested for thyroid autoimmune antibodies ( thyroglobulin and peroxidase antibodies) to see if you have Hashimoto's disease? The NHS tends to do TPO ( peroxidase) only, but possible to have Hashimoto's from the other one only - you might have to be tested privately for this therefore if negative on TPO. Hashimoto's antibodies mistakenly believe your thyroid is 'alien', attack it, causing the dead cells (complete with their thyroid hormones), to enter the blood stream. This results in peaks and troughs of thyroid hormones, that can be seen in blood test results. There are no drugs to limit this fluctuation, but many try a gluten free, even dairy free diet. Hashimoto's is also characterised by poor gut absorption, and nutrients from food, drink and supplements are compromised....possibly like yours. So Vit D, B12, folate and ferritin tests are recommended( again your Gp may be reluctant to do these, so members often use private tests)... results should be in upper end of ranges ( see SeasideSusie's excellent post replies on Vit/ mins).
Unfortunately in this country Gps tend to diagnose hypothyroidism with TSH results of 10 or more, so your highest reading at 4.43 this Feb. may not be considered. But in some countries it would be diagnosed with that; you can certainly have the various hypothyroid symptoms at this figure despite being 'normal/in range'. Your FT4 and FT3 are also low in range. I would suggest your Gp give you a trial dose of 50 mcg levothyroxin to start, then get more full thyroid tests in 6 weeks to see what progress you have made; 25 mcg added every 6 weeks till feeling better, and TSH ideally 1 or under ( low TSH is also said to help calm antibodies).
Thank you Judith! It was that particular result I was wondering about. And also how it appears to have spiked then dipped again. Is that a clue one way or another? Is that fluctuation a feature of hypothyroidism or Hashimotos in particular do you know?
Actually scratch my last response. I have received read it this morning and can see you've answered that. Thank you so much. Really appreciate it.
Px
Did you have the loading doses before being assigned quarterly B12 injections ? If you tested positive for Pernicious Amaemia it might be three monthly jabs are insufficient and as you know, their effectiveness is limited without good folate levels. They'd also have minimum effect if you didn't get the loading doses first.
I found cutting out all gluten helped and also taking a really good probiotic daily. But I can understand you wanting to get to the bottom of why your levels are so low. Hope you get your answers soon so they can be treated effectively.
Yes I had the loading doses. Felt some improvements initially but after that no improvement. I came back negative for Intrinsic Factor antibodies so they ruled out PA on that basis it seems. I have since discovered that is incorrect and one of a slew of cock ups I am trying to go back and address. Initially they stopped injections after loading as b12 levels had recovered. (Also wrong) My levels then declined again despite oral supplementation and jabs restarted. So there's defo an absorption issue of some description. (Not celiac or chrohns apparently. Or h pylori) Yes I've been reading about probiotics. Thank you Something that makes sense to me as I suspect a phase in my life when I had ALOT of antibiotics including high dose IV, may be where some of my systems got thrown out of balance. I think this all started with my gut and the rest is a cascade of consequences if that makes sense? Like jenga! Why do they not advise probiotics when prescribing anti biotics. Seems crazy!
From personal experience I would say you have Hashi's and that you need to be gluten free. The coeliac test is not reliable and many Hashi's patients are very sensitive to gluten. I believe this is why we are so poor at absorbing Iron and Vits B and D. Once I went GF things improved a lot.
I then learned that TSH test is not enough. if you can pay for Medichecks finger prick tests, they have offers on a Thursday and you get results within the week. Do test first thing, fasting and not on Thurs-Sun, so they go straight off in the post!
I always do my own test now and only go for NHS test when they insist as mostly they don't check T3 which is what every cell in your body needs.
I think after this haematology appt I'll be the same. I think I have a clear picture of what I need to do now and it's clear as day it won't happen on the NHS . But if I can get them to resolve/test a few things first so I know what I'm dealing with it will be useful ! But ultimately I will end up self treating and self monitoring I suspect. What a shambles though 😩
You can test your stomach acid yourself at home. Get some betaine hcl with pepsin. Take a tablet before eating protein. Does it burn? If no try 2 with next meal, etc... until it burns. If your stomach acid is too high betaine hcl with pepsin will hurt straight away. 1/2teaspoon baking soda with water will neutralize the acid if you have burning. Low stomach can easily explain most everything you're going through, which is commonly caused by hashimoto's. It's not that much fun to have a doctor test for it unless saliva VEGF is an option.
I kinda did the reverse of this by taking lemon juice to settle my stomach and it worked. I strongly suspect low stomach acid. It fits. (Even have a bottle of the hcl pepsin supplements ready) There are two blood tests you can have that are on my list of asks for this haematology appt.
Funny story: I am a foreigner who lives in Germany. After much research it seems the gold standard for testing stomach acid is the Heidelberg test, developed in, you guessed it, Heidelberg Germany. I went to a GI doc at Frankfurt University (1 hour away from Heidelberg) and asked him if he could test my stomach acid. He told me there isn't such a test. His stupidity caught me so off guard, I was left speechless. I wish I had called him out. LOL
Good luck with you blood test. But if they doesn't pan out you can always go it alone. I have no choice (clearly). But betaine hcl with pepsin helps a lot.
Oh my gosh! It's laughable...but not...lol! And I totally relate to leaving a docs office stunned and dumbfounded into silence. Only to later wish I had called them out too! Honestly, it's a skill they must teach in medical school.
So the blood tests are an indicator rather than definitive (but an indication will be enough for me):
So appatently, low levels of pepsinogen A (PgA) (< 17 µg/L) in blood serum and/or high serum gastrin levels (> 500–1000 pg/mL) can help support a diagnosis of achlorhydria/hypochlorhydria (absent/low stomach acid)
Most of the symptoms you have could be directly down to your low Iron levels. Iron can take months of daily consistent supplementation to correct and unless your actively taking an iron supplement first thing in the morning before food you will probably stay with a low level. Some people just have very low Iron uptake from food like myself and if your diet is restricted such as a vegatarian/vegan or you do not eat alot of red meat I would say that could be the cause.
Try get those levels in range first as hair loss, fatigue, breathlessness and dry/ pale skin are all symptoms of this and can mimic a Thyroid problem.
I thoroughly agree. It was the reason I got the haematology appt thrust at me in the first place. Basically I was begging the doctor to help needed get my Iron levels up even if it meant infusion or injections. But I simply cannot take the prescription tablets and have had no success with any oral supplementation. Liquid or tablet. I felt my b12 injections weren't working due to the lack of iron. I now discover thyroid needs iron too and judging by what I've now read; while I may not ultimately be hypo or hashimotos; my thyroid certainly isn't behaving optimally and would likely thank me for some extra iron!
Absolutely Portia1974 Low iron can have a knock on affect on so many systems of the body I feel your pain I am chronically low on iron and the strong tablets give me awful stomach cramps so I can only really take the spatone liquid with a glass of orange juice in the morning.
Yes spatone is the only one I've been able to tolerate for more than few days. Unfortunately its not enough to get the levels up in the first place...but am hoping ito may be enough to keep it there. So freaking expensive though when you add it all up!
Hi Portia1974, I have had extremely similar symptoms to you over a good number of years (in fact your experiences are almost exactly the same as mine) and came on here as I was desperate to get to the bottom of what was making me feel so rubbish. I tried gluten free, additional multi-vits and minerals, looked into all sorts of possibilities but still feeling awful. I am not in any way saying this is what is happening with you, but on Friday I got diagnosed as having fibromyalgia. I think having a thyroid disorder and assuming it was that was leading me up the wrong track. I'm just throwing in my experience as many of the symptoms you have cover both. We are all on our own individual 'journey' and it's such a minefield working it what will help us. Good luck and I hope you find some answers soon.
Hi Nelly18, please try checking out posts by Marz (Hashi's /Fibro / PA).
If you've not yet tried Magnesium Malate for Fibro symptoms - it's worth a try. Magnesium is particularly beneficial if you're also taking lots of B vitamins and vitamin D. (The B vitamins don't work that well without magnesium.)
Hi Nelly18, so sorry to hear you've had similar experiences. It totally sucks not havinv answers or anyone willing to help you look for them. Yes they have tried to diagnose me with CFS/ME and Fibro. Even going so far as to to put CFS on my record which I am writing to have corrected/removed. I am strongly resisting them on both those diagnoses because, in my case, I believe they jumped at them far too quickly. And that there is a tendency to use them as a "catch all" diagnosis whereby, because there are no clear tests or treatment for either; they can then quite happily stop looking and offer no treatment. Whereas both are diagnoses of exclusion and should only be made once other possible causes for symptoms are ruled out. In my case they haven't ruled alot out AND there are clear existing causes for my symptoms they are choosing to ignore or brush off. I also believe that once a medical "professional" sees that on my patient screen they switch off. If I tell them my fatigue is getting dramatically worse for instance, or that my joints ache...they won't look for a cause. They'll just put it down to "expected" symptoms of CFS/ME or Fibro.
And I am not in any way saying this is happening to you either. I very much hope your docs have gone the correct route to arriving at that diagnosis and you are getting good support. Sending you many good wishes 😊
Totally get where you're coming from. For me this is the first time Fibro has been mentioned as a possible in at least 10 years of looking for answers and I do believe it all finally adds up. What's frustrating is that peoples experiences of care are so different - although there does seem to be a general reluctance to refer on for further investigations. That's why we're all here! Really hope this time you get somewhere.
Well you do look Hashi's to me. Gluten free is worth trying to reduce antibodies and taking selenium too. I agree with all the advice above re: stomach acid probably being low in your case.
May be worth going down a genetic testing route. You could have a defect that makes it very hard for you to absorb folate and/or iron.
w.r.t. Folate a MTHFR defect can make it difficult to absorb b12 and folate. You need to identify a good form of b12 that works for you - it may well be that your injections are cyanocobalamin (not the easiest sort to absorb) and your body cannot absorb them that well?? Check with your GP about the injections and research this defect yourself.
There are also some people who really need haem iron (from animal sources) as they lack certain enzymes that convert non-haem into haem iron. This is a dilemma for anyone who is vegan / veggie. Similarly, there are some people who over-absorb iron, so must avoid meat altogether! I'm afraid when it comes to iron one-size does not fit all! Interestingly, hypothyroidism can exist in both cases as iron-absorption issues are linked to autoimmune illnesses.
Also check dairy as a possible culprit. (My family are all lactose intolerant).
Take any iron away from tannins (tea) and have it with vit C.
Magnesium hugely enhances the effectiveness of b vitamins and can help with many of your symptoms - especially inflammation and associated pain / anxiety / low mood. Just take away from iron and meds (ideally in the afternoon / evening).
Magnesium was 0.92 (Range 0.6 - 1 nmol/L). Sufficient do you think? I know it's upper end of range but am starting to trust ranges less and less.
I've felt for a while that Iron is one big key to this. I know B12 needs iron (for methylation) and I now discover that Thyroid does too. So that deficiency on its own could be the culprit of so much.
I don't drink tea but probably too much coffee and; only recently found out about taking vit c with iron. And that spinach is a pointless torture as the iron in it is poorly absorbed??? Is that right??
I hadn't thought about getting tested for the MTHFR gene and looking at the type of cobalamin I'm recieving being potentially the problem. Even though I've seen it on the PA forum. But you're right! I should ask them to rule that out too.
All of the things here In terms of diet and supplements (some of which I was already taking) are now on hold until this haematology appt though.
I am SO sick of Docs saying "well your bloods look in range so everything is fine" that when I had this haematology appt come up at long last; I resolved not to take anything that might skew the result. I want haem to have a clear picture of what my system is doing in an umitigated state. Or else I fear we'll just keep repeating the same cycle that's been occurring for 10 years.
If this involves letting my body tank even further for the next few weeks so be it. That's kinda how angry and desperate I've got with it all.
Thank you for all your thoughts on it. Thoroughly appreciated and will digest them all (with my low stomach acid 😭🙈😊)
Hi Karen, I agree on the Vit D. In fact I was taking additional supplements until a few weeks back (4000iu day. Safe upper limit according to BMJ & Endocrine Soc). I found out a couple of years back, my epilepsy Meds are known to screw with vitamin D, (I have reduced bone density as a result) and patients taking them are recommended to be treated (as in, by the GP) with 2-3 times the standard maintenance dose. (Which I only found out very recently). Add in potential absorption issues and now a BMI >30 and essentially 4 years of being prescribed 800iu day was ridiculously ineffective undertreatment and saw my hard won level of 143 (where i saw a tangible improvement in how I felt) fall back down to 63. I need to sustain it higher than that . Now gp has withdrawn treatment as a cost cutting exercise ignoring my Mx completely. (Or not even looking at it).
Problem is, I am SO sick of Docs saying "well your bloods look in range so everything is fine" that when I had this haematology appt come up at long last; I resolved not to take anything that might skew the result. I want haem to have a clear picture of what my system is doing in an umitigated state. Or else I fear we'll just keep repeating the same cycle that's been occurring for 10 years.
If this involves letting my body tank even further for the next few weeks so be it. That's kinda how angry and desperate I've got with it all.
Same applies with Thyroxine. While I suspect you may be right about benefitting from it...I want him to test for the antibodies...if he will. It could be that I'm hypo as a result of the chronic deficiencies. But I feel better knowing I'm not the only one who can see a potential thyroid link in there. So thank you!
Your results don’t say hypo to me. I am monitoring a relative’s tsh for borderline hypo. Tsh does move up and down. Thyroxine is not beneficial to all and can be very difficult to manage. Key for gut issues/any health issue is to go grain free for a few days. Positive effects can be that quick.
Defo intend to look at GF. Thank you. If there is a hypo element I am beginning to suspect it's linked to the long term/chronic iron deficiency but will certainly be asking to have the antibody test to rule it out. There's so much crossover it's hard to know which symptoms to attribute to what. But you guys have been super helpful. Thank you so much!
Portia, I was diagnosed intolerant to wheat and eggs over 20 years ago. I was always borderline low iron, but things improved a lot after avoiding wheat. I think it affects your gut in a similar way to coeliac disease in that the villi are destroyed and therefore you have poor absorption. After Hashi's diagnosis I went fully GF and then lacto free for 3 months. I now can tolerate LF milk and cream and eat normal organic butter and hard cheese. (Arla have full range of Lactofree products) I do hope you get some answers. Your TSH is too high and t4 and T3 too low in the range. I have conversion issues, low TSH and have decided to trial small amount of T3 which has made a difference to my remaining symptoms.
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Something that makes sense to me as I suspect a phase in my life when I had ALOT of antibiotics including high dose IV, may be where some of my systems got thrown out of balance. I think this all started with my gut and the rest is a cascade of consequences if that makes sense? Like jenga! Why do they not advise probiotics when prescribing anti biotics. Seems crazy!
I feel your pain I am chronically low on iron and the strong tablets give me awful stomach cramps so I can only really take the spatone liquid with a glass of orange juice in the morning. 
Latest blood test results for untreated hypothyroidism condition, any comments appreciated?
Help with recent blood results
undiagnosed hashi - "normal" results but awful symptoms 
