I’m just wondering how much worse do I need to get before I can get treatment? Do I even need treatment at all? Should I already be on it?
I’m still trying to make sense of what my latest blood results mean. I have hypothyroid symptoms and have had them for about 2 years now with new ones developing, so to me this means that I could benefit from some kind of treatment but my GP thinks otherwise. I’m trying to adapt diet and lifestyle to help myself but I wonder if I’m just fighting a losing battle. I don’t know what to do as my GP keeps saying there is nothing wrong with me as everything is “within range”. Should I just try to find an endocrinologist instead of relying on my GP?
TSH: 1.59 (0.27-4.2)
T4: 15.4 (12-22)
T3: 3.74 (3.1-6.8)
TPO: 129 (0-34)
Thyroglobulin: 31.1 (0-115)
Vitamin D: 97 (50-150)
Active Vitamin B12: 86 (38<)
Ferritin: 36 (13-150)
Folate: 6.9 (2.9<)
I know my ferritin is on the low side so I’m working on getting that up but my T4 and T3 have dropped since my last tests 6 months prior (17 and 4.3 respectively) and my TPO is increasing too.
I would appreciate any advice as I feel so lost and frustrated and miserable and the thought of just having to wait to get worse before I can get treated is not a happy one.
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TiggyWi
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Oh TiggyWi I'm sorry I can't give you any answers (I'm not that experienced) but, I just wanted to give you a reassuring hug and let you know you're not alone x
Also, it would really help if you can put all your results on your Bio, with ranges in brackets just like you have here, and with dates if you can, so that admin and more experienced members can look in one place and see if there's a pattern that's developed.
In the meantime, please try not to stress over it (I know that's easier said than done) and please try to relax (have a bath/listen to some soothing message or whatever works for you).
Well, there is something wrong with you, because you have raised antibodies, meaning you have Hashi's - aka Autoimmune Thyroiditis. But, it would appear to be in the early stages because your TSH is is quite low - euthyroid - and that's what doctors go by - they don't know enough about thyroid to appreciate that your Frees, especially your FT3, are much, much too low for good health. They don't even know what T3 is!
Of course, it does depend to a large extent on the doctor, but to get treatment your TSH would have to be at least over-range on two consecutive blood tests, coupled with high antibodies.
In the meantime, your B12 is on the low-side, as is your folate. So, increasing those might help a bit. I would say that taking a B complex with methylcobalamin (B12) and at least 400 mcg methylfolate should bring them up nicely.
Get your ferritin and vitamin D up, then your thyroid might improve naturally for a while, but you have the makings of an autoimmune thyroid condition so, if not, I recommend that you tell your GP that you are not 'optimum' and would like to be referred to an endo.
The biggest problem is that most Endos, like GPs, aren't thyroid experts either, they tend to be diabetes specialists so being referred is often just another crushing blow to your hope of feeling well because if you're in range that's all with which they concern themselves. Of course you might be lucky and get one that knows a bit more. I've had symptoms since 2015 and have had both private and NHS blood tests which all show my T4 bumping along the bottom and my TSH slowly rising, my B12 has dropped and on private tests is noted as insufficient but not to the NHS. I've seen hospital Endos, they all sing from the same hymn sheet, you're in range, all is well 🙄 This time my T4 has finally become out of range and the response is "retest in 8 weeks" because presumably I might get better and they will sigh with relief that they don't have to do anything. I don't actually know what this poster can do except complain and complain, perhaps search the forum for links to Hashimoto's, print it out and take it to an appointment. Maybe just maybe the GP will read and learn, the consultant to whom I gave my info still refused to agree. What can you do?
Meanwhile Look at increasing iron rich foods in your diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Unfortunately the endo can refuse the referral from your GP. I have asked to be referred several times and the reply has been we won't refer because you're in range and the referral will just be rejected.
My advice is find a private endo from the TUK list if you can afford it. You email TUK and ask for the list of private endos.
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 or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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
Thank you for your advice. I will definitely look into this. The thing is that I have already spoken to an endocrinologist in the past and he just dismissed me saying I needed to eat less and move more to lose weight and failing that I should try weight loss drugs or gastric bypass surgery so I’m a little sceptical of receiving the same comments again! My concern is my T3 being so low and my T4 isn’t great either although my TSH seems relatively fine for now. I don’t know if I can get treatment for T3/T4 alone.
second opinion is definitely well worth getting I think. It’s a small community though, so don’t mention that you’ve seen anyone before..I’m sure they most probably all play golf together and wouldn’t disagree with a colleague’s opinion! Good luck
did you mean you found an endo who was prepared to START treatment with thyroid hormone with these sort of results, or were you on levo already with your GP and endo is improving treatment.
most endo's (including most private ones) would not be prepared to start prescribing thyroid hormone based on the TSH / fT4 / fT3 results that TiggyWi has at the moment even though TPO antibodies are over range.
So unless it was with an endo who was prepared to prescribe thyroid hormone to someone with very Euthyrid results i would worry a private appt would be a pointless expense just now.. at least until she has collected more evidence showing an ongoing trend of T4 lowering / TSH rising .
my gp put me on 50mg Levothyroxine 2 years ago. My TSH results were very high within the range. My Endo took bloods and upped my Levo to 75mg. He said this should help with gut motility. Got another blood test in two weeks. Not much difference yet with gut symptoms
you were already on levo and clearly undermedicated if your TSH was near top of range.. so it's an easy job for endo to increase dose to correct it . and doing this is within their guidelines (mind you, your GP should have increased your dose without needing an endo to do it for them)
The problem for Tiggy is getting an Endo to agree to starting levo while her bloods are still showing euthyroid levels. because doing that s going against their guidelines .
stick with your dose increase, it can take at least 5/6 weeks to improve how you feel ,it's possible you may need another increase if TSH is still over 1 ... 2 ish when you get bloods done in a couple of weeks time.
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