As the title suggests I've got quite a few different areas I want to cover and need to see that I'm actually heading in the right direction, and not going crazy as the NHS are still disregarding everything I say.
I first posted here 1 year ago, I'd had NHS and private bloods taken. My TSH had been steadily on the increase over several years and was sat at 4.17. My vitamin D was 29 nmol, and my antibodies were high - TPO 255.3 (0-34) Thyroglubine 177.2 (0-115). I was feeling awful all the time, my skin was dry, feet dry and cracked sore heels, tired, brain fog, ringing in ears, aching wrists and fingers and my HEds was constantly being triggered.
After a lot of blood work on the NHS I was told to take a 1000 IU VitD supplement and they wouldn't look any further into the private test results as my TSH didn't meet their criteria. Told me if I lost weight it would likely fix all my problems - problem being I had next to no energy, I was in pain all the time and no matter how much I dieted/exercised, the weight was so slow in coming off I felt defeated.
I started taking 5000 IU VitD after speaking with people here and doing some research.
Over the last year I've seen some improvement in my energy and my aches have lessened but are still there. I also started developing really loud stomach grumbles, particularly on an evening. At first I didn't think much to it but it got to the point where it was so loud it was keeping my husband awake and I was constantly uncomfortable. That would come and go and I found it improved if I stopped eating/drinking after 6pm.
Jump to jan/feb and I got a really bad UTI that took 5 weeks to clear with 4 different antibiotics. I was exhausted and the stomach pains/gurgling were out of hand. I started vomitting and could only eat small amounts of super plain food and drank only water. I was told the meds had given me gastritis and to take more meds to clear it up. It's now May and I'm still suffering, no more vomiting and I've expanded how much/what I can eat but I've noticed that there's certain foods that are still major triggers for me. Dairy and soy. Even the smallest drop of milk in a coffee or literally one lick of an ice cream and my stomach is in knots and cramping for hours and i bloat. I cantbhave cheese or even soy sauce, I find I'm OK eating it but then 2-4hours later the cramps and gurgling start and then I'm bloated for days.
I've just had another private blood test done as GP just isn't interested. They ran blood tests for above and all came back in range but wouldn't test my VitD.
TSH was 4.17 now 2.87 (0.27-4.2)
Free T3 was 4.7 now 4.6 (3.1-6.8)
Free Thyroxine was 13 now 14 (12-22)
Thyroglubine antibodies was 177.2 now 152 (0-115)
TPO was 255.3 now 351 (0-34)
VitD was 29nmol now 88.6 (50-250)
My GP has previously dismissed the idea of hashimotos because my TSH didn't meet their threshold for thyroid issues. (0.38-5.55)
Could my results still point towards it? My VitD has increased, still not ideal but definitely better than a year ago. I've read that VitD can reduce TSH and this seems to be true for me. Slightly concerned that my TPO has increased.
Tinitus has flared back up for last 5 weeks, feel like im going insane.
I've also read that dairy/soy cause gut health issues for people with hashimoto's which is another thing pointing towards this.
Sorry it's been so long! Any advice, hints or tips pointing me in the right direction is greatly appreciated 😊
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Lunablue23
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My GP has previously dismissed the idea of hashimotos because my TSH didn't meet their threshold for thyroid issues. (0.38-5.55)
Could my results still point towards it?
You most definitely do have Hashi's with those antibody levels. There's no doubt about that. I think he may be a little confused, and what he means is that you're not hypo yet - or so he thinks. But, of course, you are, technically, with a TSH over four. It's just that the NHS likes it to go over-range - no matter what the range is - and ranges vary from lab to lab, so over-range in one lab with be in-range in another lab! Total madness! But, doctors know nothing about thyroid.
And, with Hashi's, levels are going to jump around quite a bit, due to the nature of the disease.
Slightly concerned that my TPO has increased.
Don't be. It doesn't mean anything. With TPO antibodies the important thing is whether they are 'negative' (within range) or 'positive' (over-range). Yourse are positive so you have Hashi's. The actual level doesn't matter. And they fluctuate all the time, so not even worth retesting.
I'm afraid there's not a lot you can do about any of this, except wait and see, and keep testing. And, work on your vit D, of course. Are you also taking vit K2-MK7 and magnesium? Essential when taking vit D.
And, how about your other nutrient levels? Vit B12, folate and ferritin?
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks for the replies. It's good to see that I'm not just imaging this and I can help myself instead of being gaslighted by GPs - last year I was even been told its my age and it could be menopause related - I was 34 at the time!
They suspect I have raynauds as my hands and feet are always cold. My fingers are a different colour to my hands and when I've been sat still for a period of time my hands go really pale and nails purple, my feet turn blue. Again been told to keep an eye on it - it's daily!
Other than VitD I've also been taking a women's multivitamin as I was worried I wasn't getting enough vitamins or calcium since my illness at the start of the year. It contains 100mg magnesium, and 24.5ug of VitmainK.
I've had B12 and folate tested both came back normal but I'm wondering if they need improving as I don't trust these "normal ranges".
Ferritin has come back high. All tests were done in the recommended conditions/times.
NHS serum B12 test in March 353 ng/L (180.0 - 914.0)
Private Active B12 in May 64.7 pmol (37.5-188)
NHS Serum folate level 9.6 ug/L (3.1 - 19.9)
Private ferritin 188 ug/L (30 - 169)
Sounds like I really need to get the vitamins and diet fine tuned and that should start helping more. Crazy how ive almost fully cut out dairy and soy and I've actually managed to lose 1.5stone - as soon as I have any though the bloat comes back. Will have a try of gluten free too and see if I see any more improvements.
They suspect I have raynauds as my hands and feet are always cold. My fingers are a different colour to my hands and when I've been sat still for a period of time my hands go really pale and nails purple, my feet turn blue. Again been told to keep an eye on it - it's daily!
This should disappear completely once you start on levothyroxine
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
I've also been taking a women's multivitamin as I was worried I wasn't getting enough vitamins or calcium since my illness at the start of the year. It contains 100mg magnesium, and 24.5ug of VitmainK.
multivitamins never recommended on here. Most contain iodine never recommended for anyone with Hashimoto’s. Poorly absorbed cheap ingredients, at best a waste of money, but could be making you worse. Your iron is already high. You need to stop multivitamins now
Honestly I've not been the best at actually taking the multivitamin, in last 4 weeks I've maybe had it 10 times - but yes the tests were done after multivitamin usage but not on that day.
Will stop taking them now and get everything recommended individually like I do my VitD.
I assumed my B12 was on the low side but as always I'm told everything's fine no further action.
I don't even know if it's worth going back to GP and telling them what's going on - guessing they've assumed my stomach issue has sorted itself. Clearly I'm lactose intolerant but I'll no doubt just be shrugged off again.
NHS serum B12 test in March 353 ng/L (180.0 - 914.0)
Private Active B12 in May 64.7 pmol (37.5-188)
NHS Serum folate level 9.6 ug/L (3.1 - 19.9)
These are too low ……especially if tested after being on a multivitamin
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Total medical incompetence (willful or ignorant, I’m never quite sure…)
I relate to m/understand every word of the symptoms you describe and I’m pretty textbook Hashis.
You. Are. Not. Crazy!
I thought I had Reynauds before I was diagnosed. My hands would get this weird numb cold even though it was disproportionate to the actual temperature. Yours seems more intense than mine was, but for me, doesn’t happen now that I’m on Levo.
My tinnitus… b12, yes, and also just another very common typical hashi-related symptom you will read about often here. Super annoying but harmless (as far as I know!)
Aching wrists and fingers - I hate that feeling! For me it’s usually accompanied by aching feet and ankles, and back, and general stiffness/frozen feeling in my muscles.
I was told the meds had given me gastritis and to take more meds to clear it up: not sure what meds you are on BUT my husband and daughter are lactose/dairy intolerant and experience exactly what you describe re the cramping and bloating. No mystery there as it looks like basic lactose intolerance for you (based on this one post)
My GP has previously dismissed the idea of hashimotos because my TSH didn't meet their threshold for thyroid issues. (0.38-5.55) Seriously, speechless!…. Your antibodies confirm hashis. Period. Slowdragon gave all the details there, but … ugh!
Vit D and K. Nice job getting your D up! Keep going! We aim for 100. Also - you should have about 100 mk-7 a day. We do get some from food, not sure how much, but consider the general consensus is 100 mcgs a day.
Ferritin - we typically recommend getting a measure of inflammation concurrent with ferritin, since inflammation increases ferritin. CRP-hs is what we include in our iron panels for that. At some point an iron panel might be helpful to see your total iron picture, as one measure doesn’t tell the whole story.
Serum B12 we target a minimum of 500, Active B12 I think 100 (someone may correct me here), folate we want to see around 20. So you could do with a well chosen B12 and B complex.
I've not been on any meds for stomach since mid March- I was taking lansoprazole daily to reduce stomach acid/cramps/gurgling, but found only thing that worked was cutting out dairy and high fatty foods. Was told I had to try to reintroduce them back into my diet to see how I get on - still the same problems as then - but because my bloods and stool sample all come back OK I'm being cast aside yet again.
Ditching the multivitamin altogether and will get each one individually luke I do the VitD.
Can't see me getting levo anytime soon so will just have to continue being a human icicle. Although it makes zero sense how my actual body is like a radiator - can actually feel the heat coming off me but hands and feet are near on numb.
I get a lot of aches in my lower back, shoulders and feet but have been told this is mainly linked to my HEds. Ankles and wrists always feel stiff so have to rotate them till they click.
Yeah one of the GPs basically said that they won't look at a private test or take the results into consideration. Told me NHS are only interested in TSH not antibodies! Doesn't matter that I'm suffering in the meantime.
Can't see me getting levo anytime soon so will just have to continue being a human icicle. Although it makes zero sense how my actual body is like a radiator - can actually feel the heat coming off me but hands and feet are near on numb.
Essential to test and maintain OPTIMAL vitamin levels
This will either
A) improve thyroid levels as thyroid needs optimal vitamin levels to produce thyroid hormones
Or
B) optimal vitamin levels will help TSH rise over 5 and you can get prescribed levothyroxine
Thank you so much, I am taking all of your advice on board and I'm doing more research. Hopefully once I'm up and running with more diet alterations and correct vitamins I'll start seeing some more improvements.
I turned dairy intolerant along with everything else starting but didn't put the pieces together for a few months.
My digestive system also would make extremely loud horrible noises, wind, diarrhea.i finally reaouzed it only happened after eating dairy. Was hard the first month I cut it out.... But around the one month mark I woke up one day and my pain levels decreased really dramatically.... From soreness doing everything to only sometimes and less when it does happen. Well worth it to me to never have dairy again.
My levothyroxine does have lactose in it but I am unaware of any effects of that. Have enough of a battle just getting a dose increase that I am not up to getting lactose free yet.
What milk alternatives have you tried/do you use? Soy gives me the same results as cows milk.I hate oat and coconut milk, leaves a weird after taste and coating in my mouth.
Not tried almond yet.
I did see lactose free semi skimmed in the supermarket and wondered if this would be a good option. Suppose I can only try and see what happens.
Regarding your ferritin: Private ferritin 188 ug/L (30 - 169); And no inflammation marker
Read to the bottom of this SlowDragon post for reference on ferritin ranges . Yours is over for the lab you’ve gone to, but possibly not as bad as it appears given new upper limit data.
That being said, you should get a full iron panel for a complete picture of just how much excessive iron you have in your body. Over time, excess iron is toxic and causes irreversible organ damage.
I refer you to SD’s post as I have ridiculously low ferritin so am not the best help there!
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