Desperate and not taken seriously: Since the age... - Thyroid UK

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Desperate and not taken seriously

martivane profile image
12 Replies

Since the age of 16 I've had hypothyroid symptoms but it wasn't until I was 41 that my thyroid function was tested. The results were borderline and as such dismissed as having no impact on my health, which was very poor to say the least. In the last four years it has deteriorated to such an extent that some days I can barely get out of bed. It truly is a miserable existence, both for myself and my family. I've seen five different GPs, two endocrinologists, gastroenterologist, had numerous abdominal scans and more blood tests than I can remember. In these there were some consistencies, most notably anemia, low levels of vitamin D, B12, folate, high cholesterol but low triglycerides and lymphocytes. A few weeks ago I collapsed in the morning and had yet another blood test. I wonder if any of you could shed some light on them as my endocrinologist and my GP think they are quite normal. Am I barking up the wrong tree in thinking that perhaps I suffer from hypothyroidism?

Vitamin D (25-hydroxy) 77 (51-163) Up from 33 after several injections and daily doses of 4000 IU

Vitamin B2 501 (197-771) Up from 143 after supplements

Ferritin 272 (13-150) Far too high, previously 6.0

Folate 3.3 (3.9-20)

Lymphocytes 1.3 (1.5-4.0)

Choresterol 5.9

TSH 1.01 (0.27-4.20) 2.6 in Oct

T4 12.84 (12.0-22.0) 9.0 in Oct

T3 tested only in Oct: 4.1

Thyroid peroxidase abs 12.27 (0-34)

Any comments would be hugely appreciated as I'm at my wits' end and cannot face being advised to start taking anti-depressant for the sixth time by my GP. I do not suffer from depression but I do get low when feeling particularly unwell.


12 Replies
SeasideSusie profile image

Oh dear martivane , your story is so familiar. One good thing though, at least you've had lots of tests and found some deficiencies and these are being addressed. I was just told (very many years ago) that I was a young mum with a toddler and a baby and I should expect to get tired. That went on for two years.

So - Vit D - continue supplementing, you want to get that up to 100+ and then go on a maintenance dose of, say, 2000iu daily.

B12 (You've put B2 but I expect that's a typo) - continue supplementing, you want that to be about 1000 (optimal level according to the Pernicious Anaemia Society).

Folate - oh my, that is under range. As you're taking B12 you should also be taking a B Complex to balance all the B vits. I'd recommend Thorne Basic B which has good bioavailability and contains 400mcg folate. It got my folate up from bottom of range to top of range in less than 3 months by taking one a day.

Lymphocytes, sorry I don't know and can't comment.

You have very low antibodies and they would need to be above 34 to confirm autoimmune thyroiditis (aka Hashimoto's disease).

Your TSH is actually in a nice place but your FT4 is only just in range and your FT3 would seem to be very low but without a range it's impossible to say.

As your TSH has decreased and your FT4 increased from below range to just in range since October, I personally would be doing a private test (unless your GP would agree to testing again) to see where your FT3 and your antibody levels are now. You have had TPO antibodies tested but not TG antibodies. You can get a private test done easily at home using a fingerprick test from Blue Horizon. A Thyroid Plus Ten, Plus Eleven or even a Plus Twelve (requires blood draw as it includes reverse T3) will give you everything you need regarding your thyroid status plus your vitamin and mineral levels too.

and go to the first option "postal kits sent nationwide".

martivane profile image

Many thanks for taking your time replying to my post, SeasideSusie, your comments are very helpful. FT3range is 4 - 8.3. My FT4 readings have been anything between 7.1 to 12.81 but TSH always within the range. Very confusing. I'll keep taking the supplements as you suggested.

SeasideSusie profile image
SeasideSusieAdministrator in reply to martivane

martivane So your FT3 is very low, barely in range. As your FT4 has fluctuated quite a bit, I'd be inclined to do one of the Blue Horizon tests and see if there are any TG antibodies. There is a reason for your very low/under range FT4 and very low FT3 and I don't think your doctors are taking this into account.

martivane profile image
martivane in reply to SeasideSusie

SeasideSusie, I've never been tested for TG antibodies, only TPO which fluctuate too. I'll definitely look into it. Thank you.

SeasideSusie profile image
SeasideSusieAdministrator in reply to martivane

martivane Ah, so your TPO antibodies fluctuate then? If they've ever been over 34 then you have Hashimoto's disease (autoimmune thyroiditis). Has anyone mentioned that to you? Have you got any test results when your antibodies were over range?

So, if I've understood correctly and you have had high TPO antibodies, here are a couple of links that might help

and if you look to the right of this page and further up, under Topics, you'll see Hashimoto's which, if you click on it, will take you to lots of posts on the forum about it.

Hashi's isn't treated, it's the resulting hypothyroidism that is treated. Your antibodies will fluctuate, causing your symptoms and test results to fluctuate, and eventually your thyroid will be destroyed and you'll have full blown hypothyroidism. What you can do to help is go completely and scrupulously gluten free (not a bit or nearly, that won't work) and that helps reduce the antibody attacks. Also, supplementing with selenium helps reduce the attacks.

If you have had high TPO antibodies and have Hashi's then you don't really need a private test, you've got your thyroid results and your vits and mins have been tested and you know what you need to supplement.

martivane profile image
martivane in reply to SeasideSusie

First of all, what an exceptional pool of knowledge on this site!

SeasideSusie, I've first come across Hashimoto's on this site, which was recommended by a friend with thyroid problems. Like many of you, us, she had to do a lot of legwork herself before her GP agreed to test her T3. It was her who, knowing me very well, advised me years ago to pressure my GP into testing me for antibodies and T3. At the time the first were pretty high and the latter low but my endo refused to do any further tests because my TSH was not terribly high. At the time I still used to have good phases, where for a few days or even a week or so I could function quite well, followed by a huge slump. These are now a thing of the past, with my body permanently in the first gear. In the second on a good day. I think there might be something in what you're saying about the connection between Hashi's and gluten. True, I've been on a gluten free diet before but not scrupulously so. By that I mean occasional lapses in social situations (a mouthful of cake, wheat flour in sauces etc.). I have noticed that after eating a bowl of pasta, which I love but now instinctively avoid, I feel particularly unwell. At the beginning of this year I was referred to a gastroenterologist whose first reaction after reading my notes was: 'Surely the thyroid!' However, she asked for stool samples and despite my negative blood test results for coeliac wants to do a biopsy of my gut. Could it be that she is making a connection between the two?! Saying that, my next appointment with her is in October. Four months of daily struggle with my barely functioning body, hence my plea for your opinion on this site. Iodine is another thing that caught my eye in one of the links you sent me. I've noticed that only seaside holidays do for me what holidays are meant to do. Ours tend to be pretty hectic but even so after about four days of daily swimming something shifts in my body, there comes a sort of phoenix moment when I'm reminded of what a healthy body feels like. As if things are flowing freely through it again. Last year this lasted well into September when things got so bad my husband wanted to take me to A&E on several occasions.

Thanks again to you and everyone else for their comments!

SeasideSusie profile image
SeasideSusieAdministrator in reply to martivane

martivane As far as Hashi's and gluten is concerned, gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't have to be coeliac for gluten free to help where Hashi's is concerned.

As for the occasional lapses, and your reaction to a bowl of pasta, apparently (and I am not Hashi's myself but I have read of other people's experiences) even a tiny bit of gluten can cause symptoms to return and they may be troublesome for months. It doesn't seem worth a nibble on a biscuit or sandwhich if it causes that much grief.

As for iodine and your feeling better on seaside holidays, apparently the reason sea air is meant to be healthy is that it contains minute droplets of sea water which would contain iodine and other trace elements. I live at the seaside, walk on the beach most days with my dog, however, I don't feel like you do when on a seaside holiday :( , gosh I wish I did! Just goes to show how we're all individual and react differently to things.

If you think the iodine in sea air may be helping, and maybe thinking along the lines of supplementing, do takea test first to see what your natural levels are. I did one with Genova, an easy basic urine iodine test (not a loading test which is apparently unreliable as virtually all results come back showing deficiencies). Both myself and someone I know (who doesn't live where I do) did this test. Mine came back nicely in the middle of the range so no deficiencies, hers came back quite a bit below range so she s supplementing.

linlow profile image

Being low and being depressed are worlds apart. I wish to goodness that GPs would learn to tell the difference! Foisting antidepressants off as a cure all just because they haven't a clue what the real problem is, nor inclination to learn, is so annoying. Don't give in!

Apart from vitamin D & B12, are you supplementing anything else? With vitamin D you also need K2, magnesium, calcium and A. How balanced is your diet, are you getting enough of these? How high is your intake of omega6 compared to your omega 3 consumption? Ideally the ratio should be 1:1 but no higher than 4:1 at worst. How much sugar do you consume? How much carbohydrate all together? What caused the rise in Ferritin? High levels can be the cause of extreme fatigue - even if it doesn't account for all the other issues you have been suffering over the years. All of these can lead to the symptoms you describe.

If all this has been going on so long, have you ever tried an elimination diet to see if any of your issues are caused by food allergies? Gluten is not the only culprit. Dietary guidelines, modern farming methods and food industry practises are at the root of an insidious health dilemma that has gone global as western practises spread. Yet our medical practitioners know little or nothing about nutrition at all.

How balanced is your gut microbiome. Very many health problems have their root in the gut. Often called the body's second brain, an imbalance within it can easy lead to the low feelings that you have and, possible, some of your other symptoms.

I hope that at least some of this is useful to you :)

martivane profile image
martivane in reply to linlow

linlow, thank you very much for your comments. I've been tested for a number of gut related problems including Crohn's and coeliac but they all came back negative. As did adrenal function and liver tests. I have a very good and a very varied diet, I am a bit of a (mainstream and alternative) nutritionist's dream and have been on different supplements for years, tried every possible elimination diet, alas no improvement. Despite my abysmally low energy levels I still try to exercise regularly, even if I am now sadly reduced to very gentle forms of yoga, 15 min swimming sessions or cycling and short walks. If on a good day I get occasionally carried away and exert myself ever so slightly over the limit, it can take me two to three days to recover. When I say recover, I mean being able to get out of bed in the morning without aching all over and do most basic household chores. What makes me wonder if my thyroid is the culprit is also the family history of hypothyroidism. The majority of my female relatives, both paternal and maternal, suffer from it and have been receiving treatment with more or less success. When not well, my sister's symptoms are identical to mine, down to the last detail. However, her case is much more straightforward with low T4 and high TSH. I simply don't know what else to do.

shaws profile image

This is from

Ansteynomad profile image

Have a look at the attached from the BMJ, and then start asking about secondary hypothyroidism.

martivane profile image
martivane in reply to Ansteynomad

Thank you, Ansteynomad!

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