Thyroid UK

Help pls

I have been having possible symptoms of hypothyroidism/hashi and not even realised they could all be connected until last night, putting most of it down to other things and ignoring it. Ie feeling cold, hair loss, low libido, irregular periods, gained weight which seems impossible to lose despite being active (15-20k steps a day) and counting cals/macros religiously with a 1500 cal deficit.

Had blood tests in March and again this week. All in range but TSH has increased, and T3 and t4 tested for the first time are both in range but lower end so dr not interested but I really feel I'm onto something. Any advice please?

Results

tsh now 2.62 March 1.69 range 0.47-4.68

Free T3 now 4.90 pmol range 4.0- 8.30

Free T4 now 11.60 pmol range 10.0-28.2

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Well, you need an increase in dose. When taking thyroid hormone replacement, the TSH should be one or under. Yours is too high. And, your FT3 is far too low for you to be healthy.

You're also not eating enough calories to support conversion. Especially with your physical activity, which uses up your T3. And, it's low T3 that causes weight gain.

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I'm not/have never been on any thyroid hormone replacement as dr says I'm within normal range -to be clear pls, so you think I should push for meds? Is there any "evidence" to back up my case and take her pls?

Thanks so much for your reply I really appreciate it, I'm just learning. I have upped my cals from 1500 to 1800 this week (and have gained lbs! 😱) burning (estimated by Fitbit) an average of 3000 cals. My weight is really getting me down, I've been dedicated all year and yet I still weigh more now than I did in January and sadly I can't say it's particularly down to increased muscle mass. All advice greatfully received.

I live in France I don't even know of the meds are prescription only here or if I'd manage to get it here or online without if the gp won't help me.

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Levo and T3 are prescription only in France, and NDT is illegal. So, what has your doctor said about these results?

Normally, your TSH isn't high enough to get a diagnosis from a GP - they do at least like it to be over-range. However, your FT4 and FT3 are very low, so I'm wondering if maybe you have Central hypo.

Central hypo is when the fault lies with the pituitary (Secondary hypo) or the hypothalamus (Tertiary hypo), rather than the thyroid itself. The problem is that not enough TSH is being secreted to stimulate the thyroid to make more hormone.

The majority of GPs have never heard of Central hypo, so never diagnose it. You would need to see an endo. Do you know that, in France, you don't need a GP referral to see an endo, as you do in the UK? You just ring the endo of your choice and make an appointment. They might ask you if you have a letter from your GP, but it's not essential.

Did you get your antibodies tested?

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Wow you know a lot about this! I didn't know to get thyroid antibodies tested until today-wish I had, My gp only asked for TSH to be tested despite me requesting T3 and t4 but I managed to request t3 and t4 from the phlebotomist myself and pay privately (only €16 so worth it) so I will go and try the same for the antibodies! I guess this would help clarify the secondary hypo? I haven't rad about tertiary hypo yet. Curiously my m has always told me that she had a tumour on her pituitary gland, I don't suppose it can be hereditary?

Doctor hasn't said anything after either test. Here you can collect blood test results yourself, a copy is sent to your doctor and they basically only call you if they have concerns. When I asked for the second tests she looked back on the first results and said "they were normal but I'll do them again if you want" and that was it. She is an older lady and I've been considering changing anyway so if I don't get anywhere with her I will but you've given me confidence to go and push her harder, thanks. I know she'll say even the T3 and t4 are in range but I can try. Also noticed my chlorine tested as absolute max of acceptable range at 05 in both tests

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I've been at this a long time! lol

No, antibodies has nothing to do with Central hypo, it's another research track to go down. High antibodies mean you have Hashimoto's Thyroiditis, which can play havoc with your results.

Usually, it's good to have an older-type doc because the younger they are the less they know about thyroid! But, as I said, you can't expect a GP to know about Central hypo, you need to see an endo. And, as I said, you don't need your GP's permission to see and endo, you just make your own appointment. That might be better than 'pushing' your poor GP! lol

I don't think tumours on pituitaries are hereditary, no. But, have you had a serious bang to the head, fallen off a horse, or anything like that? That could cause pituitary problems.

Don't know anything about chlorine, sorry.

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Thanks so much for your time, I'll definitely get my antibodies checked and book in with an endo. Means a lot that you've answered all my questions, thanks again

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You're welcome. :)

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Just got results back from having my antibodies tested.

Vitamin D2 & D3 26.9ng/ml

Range 10-30ng/ml =insufficient

30-70ng/ml =recommended

Oestrogen 290pg/ml (normal to high)

Progesterone 0.99ng/ml (v low)

Progesterone Range:

Men 0.3-1.2

Girls under 12 0.21-1-74

Post menopausal under 0.7

Phases of cycle 1.4-28

Thyroid antibodies

Anti-thyroglobuline 35

range less than 60

Anti TPO 15

range less than 60

I take it from this I haven’t got hashimotos but hypothyroidism, I don’t know what part the sex hormones or vitamins play only that all sights I looked on advised to get tested so I did. Progesterone being v low wasn’t a surprise I needed fertility meds to help me get pregnant.

Nobody here is interested in helping me with symptoms of hypothyroidism until it gets significantly worse and I’m not prepared to sit around getting fatter with less and less hair to wait.

So I’ve started taking nitro advanced thyro complex now and bought all the recommended supplements and plan to trial NDT independently in a few weeks. I’d appreciate your thoughts and advice please.

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The only vitamin you've had tested is vit D, which is too low, and needs supplementing, but I don't know what you mean by 'all the recommended supplements'. You should not start taking iron, B12 or folate without getting them tested first.

Therefore, if you haven't had them tested, I would not advise you taking the thyroid complex - I presume you mean Nutri, not nitro - because that contains B vitamins and will skew the results.

Also Nutri thyroid complex contains iodine, which you really do not want to take without getting tested, first, because it could make you ten times worse. So, whilst I would suggest you get your vitamins and minerals optimal before starting NDT, I would not suggest taking that.

Did you see an endo? And, did you suggest Central Hypo to him/her?

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Woah maybe I didn’t explain myself very well there so apologies but you’ve jumped the gun a bit. Yes other vitamins and minerals were tested in my previous test I just hadn’t listed every single item separately here, only the ones I was advised at the time to be most relevant T3 etc. But in fact I do know for example that I was only just in range (low) for folate, creatine, sodium, potassium, B12, ferretine, D3 despite having a decent diet high in fruits and veggies (knowingly low in calcium admittedly since I’m dairy, egg and wheat free due to allergies and can’t have all nuts either)

You are right I haven’t had every single vitamin and mineral tested individually and nor is it likely I can afford to, but I would hope the last three blood tests have given enough info to make some improvements.

Yes I mean nutri not nitro, simple typo.

Both gp and endo are telling me here they wait until absolutely necessary to medicate. And I am now aware of one friend with Hashimotos and one online friend with hypothyroidism who have been met with the same answer, quite frustrating.

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OK, sorry, so your B12 and folate are low. In which case, you need to supplement with sublingual methylcobamin, and a B complex containing methylfolate. If your ferritin is low, then you need to supplement iron.

But, I still maintain you should not take the thyroid complex, it will do more harm than good.

You didn't answer my question : did you mention Central hypo to your doctors? If that is your problem, your TSH is never going to go over-range, and they need to test your pituitary to find out what's going on.

I don't see in what way I've 'jumped the gun'. You asked for my thoughts, I gave them to you. :)

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Only in the assumption I hadn’t had other vitamins etc tested. I didn’t get anywhere, was avoiding saying this in an open Forum as I don’t like to make judgemental comments really but I just got the typical French shrug. Total disinterest. Didn’t get anywhere at all. Also exactly what my two friends have been met with and another seems to be going through currently. Sadly the response I get re my children’s autism and associated conditions is similarly unhelpful, yet with physical health issues you can see, injuries etc the French are so often way ahead.

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So I’m at stalemate.

Thanks for your time though. :)

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That isn't a French thing, it's pretty much universal. I don't know any country that has good thyroid treatment. Most health services are good if you break your leg, but have an invisible illness, and you're usually screwed before you start! That's why forums like these exist.

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