First of all, sorry for the long post. I just got diagnosed with Hashimoto. I'm having most of hypothyroid symptoms but doctor will not give me medication as my recent blood test showed everything is still in the normal ranges.
It's frustrating cause I don't know how to cope with my symptoms. Every minute, hour, and day can be different and I just can't function well throughout the day. I turned down many appointments and am so afraid to travel. My life has changed. 😩 Daily dizziness, unbalance feeling like I'm on a boat, can't stand too long, fatigue, no motivation, etc. The past 3 months I've been having stomach issues. Not pain, but super discomfort indigestion, bloating, gas, constipation. And to make all my symptoms worse, I've been having breathing issue as well for the past 3 weeks. It scares me cause it makes me feel like something blocks the airway. I've done a plain chest and abdominal scan, everything is normal. Doctor wants to do endoscopy, lung function test, and cardiac stress test, but with all the things (symptoms, doctor appointments, bunches of tests, waiting for results, etc.) that come at once, I feel so overwhelmed so I haven't done all yet. Also my endo doctor wants to do the Synacthen test. I'm not sure if every test is necessary.
If you had been through the same as me, could you please share and enlighten me what I need to do now after just got diagnosed? Diet wise (typical meals you eat daily, certain food/fruit/ingredients you avoid)? And how to cope with the symptoms?
Thank you so much for all the inputs and thoughts. I'm so grateful there's this forum where I can learn more about my issues. 🙏
PS: currently I'm not living in UK
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The very recent result:
(Nonfasting, the doctor told me I didn't need to. I only had a avocado egg toast for breakfast) taken before 9am:
TSH - 1.22 (0.35-4.55)
FT4 - 15.8 (11.5-22.7)
FT3 - 5.4 (3.5-6.0)
Adrenocorticotropic hormone - 14ng/L (<46)
Cortisol - 537
25-hydroxy - 71 (range 75-250)
Previous results to compare (different labs):
(Fasting) end May 2023 before 9am:
TSH - 2.12 (0.35-4.94)
FT3 - 4.26 (2.43-6.01)
FT4 - 12.88 (9.01-19.05)
Cortisol single - 579.6
(Non-fasting) end Aug 2023 after 12pm:
Iron - 18.10 umol/L (9.00-30.40)
% Saturation - 24% (15-45)
Ferritin - 86 ng/mL (5-204)
Transferrin - 3.05 (1.80-3.82)
Magnesium - 0.91 mmol/L (0.66-1.07)
Vitamin B12 - 416 pmol/L (138-652)
Folate Serum - 18.9 (7.00-46.4)
1,25-dihydroxy - 47 pg/mL (18-78)
(Fasting) Oct 2023 before 9am:
TSH - 2.21 mIU/L (0.27-4.20)
Anti-TPO - >1000 (<34)
25-hydroxy - 50.8 nmol/L (50-125)
Vit B12 - 421 (138-652)
Written by
Littlemitten
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Let's get started hopefully others will come along but lets start to build the picture.
So TPO antibodies over 1,000 (<34) very active Hashimoto's at present.
How old are you Littlemitten?
Do you have any other health issues that may affect your results?
It is good that you have FT3, FT4 and TSH along with the other measures - the NHS test is pretty rubbish you don't get FT3 so you are ahead of the game.
So you were diagnosed as having Hashimoto's, but your doctor won't treat? Did they make the initial diagnosis???
Where in the world are you at present and were you there for all the tests? I note that while your later tests have thyroid hormones tested your first ones didn't. TSH is made in the pituitary (not in the thyroid) is unreliable and depends on your pituitary being healthy and in perfect sync with the hypothalamus and the thyroid. There is a feedback loop that controls thyroid hormone production (have a Google for that bit).
So despite being an indirect measure and subject to interference the medical profession still doggedly hold on to the TSH test as the 'gold standard'. on first scientific principles (absurd). Your symptoms are the most important diagnostic, and the levels of thyroid hormones in your blood and TSH are merely a guide. Hashimoto's is autoimmune and the effects can fluctuate and confound the blood test results. Not all might be what it seems.
Your antibodies have confirmed you have Hashimoto's.
Littlemitten This is my opinion based on reading lived experience and reading round the subject. I am here because I was mismanaged by the medical profession and realised I would need to get genned up and self advocate. Most on this forum have had far worse experiences - I consider myself one of the lucky ones. There is an abundance of knowledge here but also opinion.
I would urge you to 'gen up' too and critically evaluate everything you are told and come to your own conclusions and I include the medical profession in that sweeping statement.
I have Hashimoto's by the way - but our experiences of this differ from person to person from a little to a lot.
Hashimoto's can be 'sneaky'. You can appear to have normal thyroid levels even when you are experiencing overt under active thyroid symptoms. So 20% of people who get a diagnosis of Hashimoto's never sample positive for antibodies.
One could ask why this is so? The disease is not constant, so the snapshot of a blood test could miss this and/or perhaps the late diagnosis could capture the disease at the end-point. Those who have not got active thyroid peroxidase antibodies at work within the blood stream get diagnosed by a scan. The antibodies are not the culprits by the way, they just come out to clean up the mess made by our immune system.
There is also something we discuss on here, but I can't at present find a reference for, if there even is one( helvella do you know of one 🙏) and that is the thyroid hormones associated with the tissues damaged by our immune system being released into the bloodstream. This source of thyroid hormone could (edit) bypass the feedback mechanism having been released without the instruction of TSH and could muddy the waters further.
Looking at your
tests that did test TSH, FT4 and FT3
You can compare by using percentages within range this gets rid of the number bias we can have when looking at a result and also the normalisation by percentage makes them comparable.
May 23 fasting before 9am
FT4 38% within range and FT3 51% within range.
Recent fasting before 9am
FT4 38% within range and FT3 76% within range.
How would you say your symptoms have evolved. Can you recall if they have been worse at either test or have you been feeling consistently poorly?
There is also something we discuss on here, but I can't at present find a reference for, if there even is one( helvella do you know of one 🙏) and that is the thyroid hormones associated with the tissues damaged by our immune system being released into the bloodstream. This source of thyroid hormone would bypass the feedback mechanism having been released without the instruction of TSH and could muddy the waters further.
First time I've ever heard anything like that, and never seen it mentioned on here. Who suggested that might be the case? I cannot see why, nor what the TSH has got to do with it. The pituitary senses what is in the blood and reacts too it, and if the blood was full of thyroid hormone having been dumped there by the dying thyroid cells, it would simply reduce production of TSH. We see that all the time when we read people's blood test results. Why is that 'muddying the waters'? In what way? Hope helvella can tell us more, because I find this very curious.
It’s one of those things I have read and simply not saved - and now kicking myself. But to be experiencing these overt symptoms with fairly tame results suggests the blood test might not be telling the whole story.
Blood tests never do tell the whole story. They only tell you what's in the blood, where everything is inactive, and are only a rough guide. But, together with symptoms, they're the only guides we have. Because there's no way we can tell what's getting into the cells. Although, I've heard that urine tests do show that, but as nobody seems to know how to interpret urine tests, I've never been able to put it to the test. And, even then, the body is such a contrary thing, I'm sure that wouldn't be much help, either.
To be honest, I've given up saving stuff, because even if I do save it, I can never find it again! 🤣🤣🤣
We-ell, I really can't see how. It's only like taking exogenous hormone, it wouldn't mess up the feed-back loop any more than that. But, of course, we should not be so reliant on the feed-back loop - or, rather, doctor's shouldn't!
It has been claimed/suggested that "Hashi's flares" are due to release of thyroid hormone as thyroid tissue is damaged/destroyed.
Because the structure of the thyroid consists of numerous follicles, the claim is that as each follicle breaks open, its contents cause thyroid hormone levels in the blood to rise.
I am NOT convinced. In my head, I can't make the quantities look right.
And - as greygoose questions - why would that override TSH, etc.? Sure, we can imagine a transient excess of thyroid hormone, but that should see the pituitary and hypothalamus react and adjust. At least, in time.
It has been claimed/suggested that "Hashi's flares" are due to release of thyroid hormone as thyroid tissue is damaged/destroyed.
By 'flares', I take it you mean Hashi's 'hyper' swings? Well, I thought that was what happened. That's what I've always believed, anyway. How else would the blood levels become so elevated so quickly?
Sure, we can imagine a transient excess of thyroid hormone, but that should see the pituitary and hypothalamus react and adjust.
I thought they did react, and that's why the TSH drops.
So, I'm even more confused now than I was before! 🤣
Trouble is that hyper swings or flares are assumed to be caused by this. I am personally not entirely convinced. Largely because there is too much assumption rather than knowing it to be something else.
Well, makes sense to me. But, maybe we should define exactly what we mean by a Hashi's 'hyper' swing/flare. Maybe it means different things to different people?
I just got diagnosed with Hashimoto. I'm having most of hypothyroid symptoms but doctor will not give me medication as my recent blood test showed everything is still in the normal ranges.
OK, so your Hashi’s was diagnosed by high antibody levels. But, just because you have the antibodies doesn’t mean you’re hypo at this moment – despite the symptoms. Symptoms often appear before you notice abnormal levels in your blood tests.
TSH - 1.22 (0.35-4.55)
FT4 - 15.8 (11.5-22.7)
FT3 - 5.4 (3.5-6.0)
So, Your TSH is euthyroid (normal) but your FT4 is low. Your FT3 is is above mid-range, and higher in range than the FT4. This is suggests that your thyroid is failing, but it hasn’t failed yet.
The only treatment for Hashi’s is thyroid hormone replacement, replacing the hormone your thyroid will not be able to make enough of to keep you well. But, with levels like those, there’s no guarantee that starting THR now will help you. You do not appear to need more hormone. But, even if you did, with that TSH, no doctor would treat you – and that’s all they tend to look at! It would have to be at least over-range, with high antibodies.
Daily dizziness, unbalance feeling like I'm on a boat, can't stand too long, fatigue, no motivation, etc.
Now, that could be due to your B12, because it is lower than optimal. So, the first thing you could do to help yourself is to get yourself a good B complex and take it daily. A ‘good’ one is one that contains methylcobalamin and methylfolate, rather than cyanocobalamin and folic acid.
can't stand too long, fatigue, no motivation
These symptoms could be due to your low ferritin. Your iron is not too bad so you don’t really want to take iron supplements. Best to try and raise your ferritin through diet, eating things like liver (once a week only) or liver paté, plus some sort of vit C source, like potatoes or some sort of veggie rich in vit C.
The past 3 months I've been having stomach issues. Not pain, but super discomfort indigestion, bloating, gas, constipation.
Now, that sounds like low stomach acid, which hypos often suffer from, and would explain your low nutrient levels. Doctors always imagine that symptoms like that are due to high stomach acid, because the symptoms are the same, and prescribe PPIs, but they are the last things you want to take. You could try raising your stomach acid by drinking Apple Cider Vinegar in fruit juice (through a straw) before meals.
Doctor wants to do endoscopy, lung function test, and cardiac stress test
Not sure the endoscopy is that important, but lung function test and cardiac stress test might be a good idea just to be on the safe-side.
Also my endo doctor wants to do the Synacthen test.
I can’t imagine why. Your Adrenocorticotropic hormone (ACTH) at 14ng/L (<46) looks good. And your cortisol - Cortisol – 537 – isn’t low. So, I don’t know what he thinks the test will prove. It certainly doesn’t seem urgent.
what I need to do now after just got diagnosed? Diet wise (typical meals you eat daily, certain food/fruit/ingredients you avoid)?
There is no special diet for Hashi’s/hypo. You need plenty of good protein and fats, lots of fresh veggies and fruit. Some carbs. Basically, just eat what agrees with you. You could experiment with a gluten-free diet, because Hashi’s people are often gluten-sensitive, but get tested for Coeliac Disease first. You could also try a dairy-free diet, in case dairy is causing some of your symptoms. But if neither of them make you feel better, go back to eating as you were before.
What you need to avoid are unfermented soy – soy flour, soy protein, soy oil, etc. – artificial sweeteners and processed seed oils. Which means avoiding processed foods which contain all three.
Have a gander at Littlemitten 's first post in the Anxiety forum. Could point to the start???
Littlemitten can you recall when your symptoms started? Had you even thought there may be a connection? It took me a while to work it all out but I reckon I was sub clinical for years. It creeps up on us go gradually.
Oh my! Not much in the way of helpful replies there!
Littlemitten high B12 is only a problem in someone who is not supplementing. You were supplementing, so any excess will just be excreted. Expensive urine, that's all!
But, not much point just taking B12. All the Bs work together so need to be kept balanced. Therefore, when taking B12 you should also be taking a B complex, one that contains methylcobalamin and methylfolate, rather than cyanocobalamin and folic acid.
You only get B12 from animal products. There is none in fruit or veg. So, as you said you don't eat much red meat, maybe your diet was deficient in B12, or maybe the thyroid problesm were making themselves felt by reducing stomach acid so that you had problems digesting your food and absorbing nutrients. Or, maybe a bit of both.
Glad the admins provided their responses as usual!
I just have a question - I’m curious if you were just now diagnosed Hashi, what was happening three years ago in Dec ‘20 when you joined this board/forum in the first place?
You can belong to more than one forum on HealthUnlocked - the overarching platform. The post 3 years ago was for a forum on anxiety - But points to a possible starting point. So many of us get diagnosed with anxiety and or depression long before an under active thyroid (I was).
Just to add my experience. I was diagnosed hashi about 10 years before I started having any symptoms. In those ten years, I was subclinical and then back to euthyroid for a couple of years. Then a few years after that the symptoms started and my TSH nudged over into overt (but only just). At this point treatment started. As far as breathing goes, having an underactive thyroid actually benefits asthma and asthma can become a bit harder to manage once you become euthyroid. So it is good that you are having lung function testing, as that will show up if there are any issues with asthma, COPD, or gas transfer etc. the article below is where i got the information about hypothyroid and asthma, it also looks at other disorders and medications with regards to underactive thyroid, so might be a useful read?
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