Sorry if this is a bit long. I have been struggling with symptoms of hypothyroidism for about 5 - 6 years. I also have a long family history of hypothyroidism and all of my female relatives battled their way to a diagnosis, and I seem to be following suit.
Just before covid struck, my then GP was convinced blood tests would show this. He did a wider range of tests, and we were both surprised they came back “normal”. Nothing happened until now for a host of reasons. The pandemic, me getting covid which became long covid, then me getting a few injuries and generally finding GP visits, the few I had, challenging.
So, recently I got to a point where I felt I had to peruse this again as I am finding it very uncomfortable to swallow (not pain, but a lump is obviously present) so sent off for private thyroid blood tests. Last week I got the results which show high TPO antibodies, TSH and T3 relatively low and T4 relatively high. It also shows my ferritin and B12 are low, and folate towards the low end of normal range (results attached in case they’re helpful). A private GP said she would treat symptomatically if I were registered to her surgery, but won’t as part of that service and suggested I go back to my GP. My GP rarely can offer up appointments and I’m concerned they won’t actually trial levothyroxine which I am certain is what’s needed.
Has anyone got advice for me from their own experience? Should a private GP be willing to prescribe, even if only short term (I’m happy to accept I need to seek alternative diagnosis if the levothyroxine doesn’t help).
if you made it this far, thank you so much for any help you can offer.
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TheMudRunner
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Well, you have autoimmune thyroiditis - aka Hashi's - where your immune system slowly destroys your thyroid. With Hashi's levels of everything can jump around so just because those are your levels today, next month they could be totally different. Unfortunately, doctors don't know that.
What time of day was the blood draw for this test? Because the TSH - which is all doctors tend to look at - is highest early morning, and drops towards midday, then rises again in the afternoon. So, as you want th highest TSH possible, to get your doctor's attention, it's best to test before 9 am, and fasting.
Your TSH here is in-range, but too high, suggesting you are actually hypo. However, it should be at least over-range - if not higher - to interest your GP.
Your FT4 and FT3 are both too low: FT4 is only 16.00% through the range! To be 'normal' it should be around 50%.
Your FT3 is a little higher at 32.43% but that's still too low. It should also be about 50% through the range, but slightly lower than the FT4. And the fact that it is higher in-range than the FT4 is also a sign that your thyroid is failing - so not surprising that you've had symptoms for some time. But, doctors don't know that.
Your vit D is deficient, and for that alone you should see your GP and get onto loading doses. Even though a GP is not the right person to give nutritional advice, they should recognise that deficiency. But what they won't tell you - because they don't know - is that if you're taking vit D, you should also take its cofactors: magnesium and vit K2-MK7.
Your magnesium result looks good but there's really no point in doing the test, because the results are unreliable. Just take it.
Your ferritin would be better up around 100. And your folate is good but your B12 is too low. Are you vegetarian?
Your cortisol is on the low side but that's to be expected with your low FT3.
My GP rarely can offer up appointments and I’m concerned they won’t actually trial levothyroxine which I am certain is what’s needed.
I doubt if he would offer levo with that TSH because it's in-range. But, you're right, you do need thyroid hormone replacement. But I doubt he knows enough about thyroid to understand that. Pity you can't see that private GP because she sounds a bit more intelligent.
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
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
was this test done early morning, ideally before 9am only drinking water between waking and test
This will give highest TSH
Retest thyroid 2-3 months after working on improving low vitamin levels
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
To everyone who has replied, thank you so very much. I’m feeling rather emotional as it’s been a really challenging journey, as I have felt dismissed for a very long time.
To answer some question asked. Test was done at 9:10am, and I had not eaten. I had had one cup of tea, which hopefully isn’t too impactful?
I’m definitely not vegetarian or vegan. I eat a high protein diet (I’ve been desperately trying to control weight gain / lose weight over the last 18 months), with low fat and keep an eye on carbohydrates. Gluten free is interesting… and slightly terrifying.
When I took the test I had stopped my supplements for over a week prior as I didn’t want them to influence the results. I usually take vitabiotic multivitamin for women, their iron supplement and selenium. I have started taking vitamin B12 and D since the test which I can see contradicts the advice to add one at a time - should I stop or continue at this point SlowDragon ? I think swapping to the spray recommended is a great idea.
So, the biggest issue is how to approach my GP, as and when I’m granted an appointment… Any advice on how to approach them without being accused of being emotional / angry / depressed/ anxious and being dismissed again (as a female this is sadly also not uncommon…).
Thanks again, it means an awful lot to finally find listening ears and helping hands 🙂
SlowDragon - thank you. I’ll check my multivitamin for iodine, as I’d not thought of that as a potential issue. I’ll stop taking it if that is present.
I will have a read through all the links in the morning as I’ve lots to learn before facing a GP again. greygoose thank you for your help too 😀
It's not just the iodine in multis that is the problem. If it contains iron it will block the absorption of the vitamins. And most of them contain calcium - highly unlikely that you need that, and too much is not good. All multis are best avoided.
Low-fat diets are a very bad idea. The body needs good fats. And eating fat does not make you put on fat, so how would not eating it make you lose it? Besides, when you are hypo, weight-gain is more likely to be water-retention that fat, and no sort of diet is going to help with that.
Do you have a husband/brother/boyfriend you can take with you? It's a terrible thing to have to say, but women are more likely to be taken seriously if they have a man in tow! Failing that, take a female friend because witnesses make doctors nervous and more likely to be co-operative.
Thanks greygoose . So, as well as the multivitamin (which does contain iron, but not calcium. I’m guessing it’s no use because of the iron in it (12mg)), I’ve also been taking Feroglobin capsules. They contain B6, folic acid, B12, iron as numerate, zinc and copper. In addition I’ve taken a selenium supplement that has vit C & E and açai berry in addition to the selenium.
So, sounds like I get rid of the multivitamin. Do I keep the feroglobin and / or the selenium or stop taking these too? The reason I have been taking the feroglobin is because historically I have had bouts of anaemia- I was surprised to say the least when my ferritin levels were normal in my blood test, especially given where I was in my cycle.
Re. Fat, I don’t avoid it particularly but as it’s calorie dense I don’t prioritise it when trying to be in calorie deficit. Cheese is too nice (the idea of a dairy intolerance is one that makes me sad..!), and I agree with your comments.
I was thinking of asking my husband to come along with me. It really shouldn’t be necessary but I’m well aware of the realities of our world and sometimes you just have to roll with it.
I would advise against the feroglobin. I was taking it for a while, it has slow release iron and in my experinace seemed to block the absorbtion of my thyroid hormones. I realise you are not on replacement hormones yet but when you are you dont want to be taking that stuff. I have a weight problem but have lost about 7 stone now I have the correct dose of thyroid hormones and am doing some gentle fasting twice a week.
I was taking it four hours apart from my thyroid hormones but it seemed to still block absorbtion due to being slow release I think. I was really ill for a while after taking it for a month or so.
Ah right! Slow release. So, yes that is possible. I really don't like these slow-release things because they're unpredictable. You never really know how much you're getting. Have you tried taking one that isn't SR to see if that's better?
Yes, stop the multi - or at least, don't buy anymore because it's just a waste of money. You're not getting all the nutrients you think you're getting.
I’ve also been taking Feroglobin capsules. They contain B6, folic acid, B12, iron as numerate, zinc and copper.
Oh dear, why do they do this? If you need iron you should take it on its own apart from vit C - which is essential for absorption - at least two hours away from everything else.
Zinc and copper shouldn't be taken with iron, either. And hypos shouldn't take them without testing first. Zinc and copper need to be kept balanced, but hypos are usually high in one and low in the other - most often low in zinc. And taking the one you're high in is not a good idea, so you shouldn't take both.
In addition I’ve taken a selenium supplement that has vit C & E and açai berry in addition to the selenium.
Well, I suppose that's harmless, but the question is: why? Why do they bundle these seemingly random nutrients together in one pill? It makes chosing your supplements so complicated for one thing.
Is the selenium l-selenomethionine, not more than 200mcg? If not, stop taking that one, too. And give yourself a break from it every couple of months.
Re. Fat, I don’t avoid it particularly but as it’s calorie dense I don’t prioritise it when trying to be in calorie deficit.
You should be trying to be in calorie deficit when you're hypo. You need calories to convert T4 to T3. And forget this old codswallop about calories in vs calories out, it just doesn't work that way - especially not when you're hypo, and especially not as the weight-gain is more likely to be water than fat. In other words: stop dieting!
Thank you for a really thorough reply. I’ve just got back from my GP surgery who have essentially said they won’t proactively find an appointment for me, so that’s a bit frustrating, but a separate issue to navigate.
Right - the selenium tablets just say selenium at 165ug so I won’t bother with them either. Minefield..! Less tablets is good - I was starting to rattle 🤣
I may be back to ask for information of how to order levothyroxine privately without a prescription yet… That feels a bit rebellious though 🫣
No, less tablets bad! It may be a hard fact to swallow, but when you're hypo you're going to need to take lots of pills - not just the one little pills and everything's sorted, as doctors like to tell you. You're going to need all sorts of supplements to combat nutritional deficiencies, and the best way to take them is one by one. Exceptions being:
- vit D with vit k2-MK7
- B complex with all the Bs
- iron with vit C.
But yes, it is a minefield. And manufacturers count on your ignorance to be able to impress you with out-landish cominations like the ones you've mentioned above, to make their money.
That feels a bit rebellious though
Good lord, woman! How old are you? Did you go all through your teens without rebelling? We all need to rebel from time to time. Rebelling is good. Stand up for what you believe in. We should be believing in better treatment for hypos so it's very good to rebel against the medical status quo. Be a rebel!
43. And I am not beyond rebellion 😆 I am feeling a bit overwhelmed and emotional though. How can you know you have an autoimmune disease through testing and have a GP surgery refuse to make you an appointment and leave you to the appointment lottery (apparently very easily, but the system is just so broken).
So, lots of tablets, and I need to work out when to take them relative to the thyroid treatment tablets (when I get any) and to each other. Doable if not 100% straightforward.
If I were to rebel, where would anyone recommend sourcing levothyroxine from (I believe I’d need to be told via private messages)?
The system is completely kaput. And it's not run to help people anymore, it's a business to make money. It's disgusting! But they do not see antibodies as a priority because they have so little understanding of the thyroid and how it all works.
No, it's not straightforward working out a pill timetable, but we can help you with that. You're not alone.
Yes, you would need people to PM you with links to their trusted on-line sources for buying levo. But first it would be a good idea to write a new post asking just that. The admin will close the post to replies so that people have to contact you by PM.
I honestly am so grateful to you for your help and guidance through all of this. I will do as you suggest, and agree that the NHS, brilliant though it is when it does work, is teetering on the point of collapse. It’s a very sorry state of affairs indeed 😞
there is a problem with starting treatment before qualifying for an NHS diagnosis , which is that you can't then get NHS prescriptions for levo... unless you come off Levo again for long enough to prove you need it ..which could take several months / years for TSh to rise enough.
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