I'm new here, so first up, big thanks for this forum, which I've been reading on and off for some time now.
I hope someone here can help, I'm at my wit's end after 3 years of hypo-like symptoms but no diagnosis. A friend who is a member here suggested I should post some of my test results for feedback.
I wanted to post some backstory and more about my symptoms, but as I'm currently beyond exhausted and bordering on a crash (I think folks call them flare ups?) I will trim down to the bare essentials for now.
Suffice to say I can tick numerous boxes on the Thyroid UK hypo checklist, predominantly I suffer ongoing fatigue with brain fog, weakness, bowel issues, palpitations and insomnia. And so much more.
This all started 3 years ago, after surviving massive pulmonary embolism. It means I've been able to get a lot of blood tests, but the docs can't find any reason for the ongoing problems. They are about ready to say it's CFS/ME... but I'm hoping to have something treatable.
Several women on my mum's side of the family are hypo but oddly all took years of symptoms to get diagnosed.
So, blood results (and lab ranges) from Jan/Feb 2016, wow, it's been a while!
TSH 1.54 (0.2-4.5)
Free T4 13.1 (9-24)
Free T3 3.8 (2.5-5.7)
Thyroid Peroxidase Antibodies 11 (under 70)
B12 464 (supplemented, sorry I don't have any from before)
Folate 20 (also supplemented, I had high homocysteine prior)
Vit D (July '16) 16 (now supplemented, got to 105 now 85)
If there are any others that would be helpful let me know, I've likely had them!
Current meds:
Dabigatran 150mg twice daily (lifer on anticoagulants due to severity of PE)
Vitamin D 800ui daily (was 3000ui first 3 months)
di-Magnesium Malate 180mcg daily
B vit complex daily (includes 1200mcg methyl folate and 500mcg methylcobalamin - full dose is actually double, but this stuff is costly and more doesn't seem to make a difference)
I just want to get better. My life is nothing like it used to be. Work, rest, work, rest, pay the price for trying to do anything more. I'm so fed up. Could I be hypothyroid based on those figures?
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shiningmoogie
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Sorry, I'm not sure how to edit my post but I wanted to add my Ferritin which has been 24-27 (range 15-200) for a couple of years, also CRP from 4.7-8.6 over the same period. Thanks
It astonishes me that the designers of a Health website which is likely to attract ill, brainfogged, non-computer literate and elderly people should assume any of them will understand these funny little icons. When I first started using computers I was terrified to click on things in case they blew my PC up
I guess the problem is when sites are designed and built by people who aren't in the key demographic!
I'm a web developer by trade, you'd think I might have spotted the icon there. I shall remember this as a lesson to me in my work, to make more effort to think (or fail to think, haha gotta love that brainfog!) like the end user.
To edit you click on the little arrow under the text and then click on 'edit'.
Your ferritin is dreadful and needs fixing. It could be causing your fatigue. If your d continues to fall you may need to reconsider your dose. The current thinking is that 800 really is not sufficient for most people. But if you got it over 100 on 3000 daily alone you may be ok, or you can always just add an extra 800 a few times a week to keep your levels robust.
These are not ideal thyroid results - your t3 and t4 are a little on the low side - but with these results and without antibodies you won't get a trial of levo. I would continue to supplement and monitor and address the ferritin issue, then see where you are.
Thanks very much. I have a Vit D test in a few weeks and then a followup with my GP to adjust dosage if needed. I will defo raise the ferritin issue with him then too.
Looks like a case of more try-it-and-hope then. It all takes so long, find a problem, fix it, realise I'm still ill so lather rinse repeat, lol. Guess ferritin is my last best hope before being sent to the CFS clinic.
Thanks for the edit tip too, my brain is pretty shot today!
No worries, it can be hard to figure out the edit thing, you're not the first.
If it's any consolation there is no way to 'rule out' thyroid disease, it is progressive and can take many years to become official via bloods. A lot of folk feel wobbly for many years (depression, fatigue, hair loss etc) and have normal test results before the day their bloods look abnormal. If you sort out what you know is wrong right now (ferritin etc) you can keep an eye on the thyroid thing and if something does appear you'll be on top of it.
The good news is that your doc sounds ace! Have never heard of one paying so much attention to vit d. Sounds like a keeper.
I've been quite fortunate to have a wonderfully accommodating and thourough haematologist following my PEs, who has referred back to my GP when needed.
I was a bit concerned that my GP told me there's a lot 'rubbish' on the internet about thyroid and that he is certain my results are fine, but for the most part he's been great. The fact that folks here agree that the results look fine is reassuring. And yes perhaps I am one of those people who will go on to develop bloodwork years later to corroborate my years of symptoms.
I found some previous results from December 2013 showing my TSH as 1.1 and Free T4 at 16.1, as well as results from July 2012 where TSH was 1 and free T4 was 13.7. Looks like my TSH has been gradually on the rise...
Well, although some fluctuation (up as well as down) is normal I do not believe it's 'normal' as such for tsh to increase over time - unless someone else can correct me? It indicates that your thyroid is beginning to need more stimulation to produce adequate hormone. In time it is likely that one day your tsh will be over the top of the range and/or t3/t4 under the range.
Those are small fluctuations in TSH and can be accounted for if you tested at different times of the day. TSH fluctuates throughout the day being higher early in the morning and lower later in the afternoon. So there's no point in comparing results taken early a.m. with those taken late afternoon.
Thank you Clutter, I didn't know that. However, my GP surgery only does bloods in the morning and my Haemo appointments are always around 10-11am so the blood draws were all between 9-11am, more likely all 10-11am as I seldom agree to appointments any earlier!
Still, if the upward trend is more likely just small fluctuations, nevermind
Will check out the graph in a mo, must get my oomph on and make dinner!
TSH, FT4 and FT3 were euthyroid (normal) a year ago and thyroid peroxidase antibodies were negative for autoimmune thyroiditis (Hashimoto's). You didn't have any thyroid dysfunction a year ago but things change so it is worth having another test now as you are so symptomatic.
B12 486 is adequate but I wouldn't let it drop lower. Ditto folate.
VitD is dropping on 800iu. You might want to maintain levels with 2 x 800iu or 2,000iu daily to keep VitD level around 100.
Ferritin 24-27 is very low. Ferritin is optimal halfway through range so you might want to supplement iron and take each tablet with 1,000mcg vitamin C to aid absorption and minimise constipation.
CRP is an inflammation marker. Ideally it will be <5.0.
Thanks very much Clutter My B12 is actually in the 900s these days which I think is much better?
I have a vit D test in a few weeks and a followup with my GP about that, so will ask about increasing my script.
So, I take it the figures a year ago definitely don't indicate thyroid disfunction? I'm much the same now as I was then in terms of symptoms, but I'll see if I can get some more tests. I have some previous TSH and free T4 results if they might help in terms of indicating a decline in function?
Thank you for the feedback on the ferritin, I thought it looked low and am surprised none of my docs (esp haemo) picked up on it, though apparently my haematocrit and haemoglobin are fine. Since I spotted the ferritin figures a month or so ago, I've been trying to increase my dietary intake (+ foods with vit c). How much iron do you think might be necessary? I actually wouldn't mind some constipation as I have the opposite problem!
You've been really helpful, thank you. Guess my doc is right, it's not hypo. Looks like the CFS clinic for me then!
You can buy vitD over the counter if your GP discontinues your prescription or won't increase it.
Definitely no indication of hypothyroidism a year ago but things can change so ask for another thyroid function test.
2 x 210mg Ferrous Fumarate for 3-4 months and then 1 x 210mg for a couple of months should raise it. Have a retest in 6 months because you don't want it too high either.
I'd work on raising ferritin before accepting a CFS diagnosis.
You can get prescription-strength iron supplements without a prescription either at pharmacies (it is up to the pharmacist's discretion - shop around if refused) or online. Do a search on the forum for ferrous fumarate, ferrous sulfate, ferrous gluconate, and ferrous bisglycinate. Also, non-vegetarians can eat liver and get good results in raising iron from that.
Thanks, I'll have a search & read. I should probably consult a doc before I add iron tablets as I'm on anticoagulants and need to beware of interactions.
I'm not a fan of liver, but remembered enjoying liver sausage as a child so have been having 3-4 slices of that daily for the last month. I also swapped my porridge breakfast for weetabix (fortified) and have an orange with it to help absorption.
It's best to take iron away from milk and calcium as they can reduce absorption.
Also, it may be worth asking your GP to test for celiac disease as this can cause nutrient deficiencies and fatigue. Regardless of the result, it may then be worth trying a few weeks on a gluten free (and low sugar) diet to see if your symptoms improve, as it could still be non-celiac gluten sensitivity which can cause hypo-like symptoms in some people.
Thank you Sadly my docs have already tested for everything they can think of, including coeliac, which is why I'm now clutching at straws for something other than a CFS diagnosis I've not tried gluten free, but am very aware of the dangers of sugar (I used to work for a company who helped people with nutrition and eating plans) so have very little of the white stuff in my diet now!
I'll add gluten free to the list of things to try, thank you
Yes, definitely worth a try. My daughter's joint pain and fatigue improved greatly when she went gluten free and prior to this I had no idea she was sensitive to it.
As Pulmonary Embolisms appear to be linked with autoimmune diseases, I would ask your GP to check for a full range of autoantibodies and possibly also investigate inflammatory bowel disease if you have digestive issues.
I've had so many blood tests in the last few years you wouldn't believe it, including an extensive thrombophilia screen. If there are any specific autoimmune conditions that are seldom tested for I'd certainly like to check if I've had them done or can get them!
Oddly he's never suggested IBD or IBS, they've just put that side of things down to my meds, as digestive issues are a common side effect. Another thing to mention at my next appointment!
I worry he's going to start thinking I'm a hypochondriac, lol. Just want to know what's wrong and how to fix it. At times I question whether I'm imagining it, but when a random good day comes along I'm briefly reminded of what life used to be like and then I know again for sure that I am not well.
It sounds like you have a very good GP. Another thing you could check is cortisol which in the NHS requires a 9am blood test. Low cortisol symptoms are very similar to hypo:
Thanks for this, I'll read up on it tomorrow as I'm off to bed now Dread the thought of having to get to the GP by 9am, I'm barely out of bed by then! (and still never feel rested). I work from home so thankfully can drag myself out of bed, pull on some slobby clothes and get to my desk. But whatever it takes to get a diagnosis and aay forward, eh?
II am not a fan of liver either, one thread I read a while ago suggested mincing up small portions and 'hiding' it in other meals like spagbol or curry
Just an observation* reading your story after a serious Pulmory embolism,(this is based on my experiences) is your body has got stressed( cortisol)the stress hormone can wreak havoc in the body ,it can supressed tsh the petuitry and create hypo symptom by stopping t4 convert to t3 in the tissues allowing the dreaded rt3 from docking creating hypo on a cellular level ?your t4 is quite high is it possible that this could be happening ,?
Just a possible suggestion based on my own experiences and symptoms.
Thank you Are you a fellow PE survivor? Sounds like it, hope you are doing better now.
I intend to mention cortisol to my GP at my next appointment as I don't think it's ever been tested. I didn't thijk my T4 looked high though, more like low to mid range? Or are the lab ranges unrealistic?
Sorry read t4 wrong,what happens as in my case is you keep getting normal readings but you present hypo at the drs ,which is maddening when you feel so pants ! My problem at the moment revolves round my menstrual cycle,I had a collapsed lung when I was a younger girl ,I swear it was stress that caused it
That's exactly it, it's so frustrating and I can barely remember what normal feels like. I miss having a life outside of work.
I hope you can get to the bottom of your cycle issues. I just had my implant out in December, wondering if that was causing my problems. No change yet, but I guess if it's hormones it could take a while. Have you looked into estrogen dominance at all?
Sorry to hear about the pneumothorax. My ex suffered one years ago and it took him wo long to fully recover after all the surgeries.
I think any major medical event which affetcs the major organs can cause ongoing issues, no matter if the docs and tests say all is fine now! My heart and lungs have had so many tests these few years and are medically fine ... but they don't feel fine!!
Yes it takes years to recover from any major event in the body thanks for the encouragement I will definitely put estrogen on my "to do list "I was reading up about it last night in fact x
Thank you, I've been tested for coeliac and they all came back negative, though I should defo comsider trying gluten free. My main issue with this is that I have so little energy for cooking and I know my husband won't want to do GF, so I'm going to have to do different dinners for him (he's quite fussy, very into beige food!). I'll have to do some planning!!
lol, he'd live on pasta with grated cheese if I'd let him!! I try to get some nutrition into him to counter the beige, but he's very stubborn about it. Shouldn't moan tho, there are worse vices he could have, to be sure!
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I've not tried gluten free, but am very aware of the dangers of sugar (I used to work for a company who helped people with nutrition and eating plans) so have very little of the white stuff in my diet now! 
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