I'm new to Hypothyroidism any advice please - Thyroid UK

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I'm new to Hypothyroidism any advice please

Hypogirl60 profile image
15 Replies

Sub clinical hypo 5yrs ago but weight gain 3 stone, tiredness, brain fog, migraine, general aches pains and continuing health problems over the last few years sent me off to a well known retired Naturopath last October who works one wk a month. Here are my first test results Active B12 189, Ferritin 87, TSH 5.25, Free Thyroxine 12.8, Free T3 4.2. I was advised to use B12 patches once a week and B12 tablets with intrinsic, an adrenal, thyro complex and desicated thyroid tablet from Nutri Advance. 2 months later my tests results were TSH 0.07, Free Thyroxine 15.9, Free T3 7.1. I didn't feel any different other than the tablets made me feel sick I was on 6 tablets of desicated thyroid (2 tabs 3x a day). Advised to continue with the dosage but Naturopath failed to tell me Nutri Advanced were out of stock of Adrenal and desiccated thyroid tablets and they still are since last December. I am not consulting this Naturopath now the thyroid complex didn't seem to do much although I was only on them for a couple of months. I have ordered desicated thyroid tablets from the states without a praticianer I can't buy them in the UK but it's expensive and takes over a month to get here via customs. I am also taking D A K drops and going it alone as I tried to postpone the next appointment with the Naturopath in April because I had not had the Adrenal and desicated tabs and was also going into hospital for herniated disc and sciatic nerve decompression but he wouldn't have it haven't heard from him since. I don't want to go the Thyroxine route have a list of London Dr's from Thyroid U.K. but couldn't find someone i thought was good. Appreciate some views can a thyroid ever start working properly without support? How long does it take once your on medication to start to feel better and loose weight I don't diet any more I think that makes your thyroid worse I have organic meat and diary only coconut oil for cooking. If going alone I think I should be on standard dose. Thank you in advance for any advice views.

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Hypogirl60 profile image
Hypogirl60
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15 Replies

Can you share your dosage of Dessicated thyroid? And did you not start out at a low dose and gradually build up over time as blood levels tested? Curious... I take my NDT early am (once) at least 1 hour prior to eating. The multiple dosage(s) you take during the day are not at all familiar to me (?). As for "standard" dose there is no such thing.. everybody is unique and must dose according to their own individual levels.

Lozzer66 profile image
Lozzer66 in reply to

Rusty64. .how much ndt do you take.?..do you not split your dose and take half in morning and half afternoon?...I'm wondering wether to take mine all at once but the general consensus is to split?

in reply toLozzer66

Lozz.. I take 90 mg (equal to 1.5 grains I believe). With NDT I've read to take it early AM (some suggest nighttime which I may experiment with). Honestly I couldn't fathom spreading out dosage during the day - with the need to fast prior to dose and not eat till 1 hour after. Way too much heavy lifting!

Lozzer66 profile image
Lozzer66 in reply to

Yeah Rusty64 that's how I feel ..currently splitting. .early morning and mid afternoon. ..I graze with food all day long and do find it difficult! ....do you not 'crash' in afternoon like you may need more of it or do you feel the morning dose literally sorts you for the day?

greygoose profile image
greygoose

I'm afraid we need the ranges for those results, or they are meaningless.

NDT does not 'support' your thyroid. If your thyroid is failing enough for you to need 6 grains of NDT, then it is never going to work again. The NDT just replaces the hormone your thyroid can no-longer make.

Hypogirl60 profile image
Hypogirl60

Hi, sorry TSH range is mIU/L 0.27- 4.2, Free Thyroxine pmoI/l 12.0-22.00, Free T3 pmoI/L 3.1-6.8 for both tests as same lab. The desiccated thyroid was 140mg per tablet and I just started at the 6 tabs a day I took 2 at breakfast, lunch and dinner. I was not advised to take them x amount of time prior to eating but I have wondered from reading some of the posts. Goodness I am even more confused what I don't want to do is make myself worse. I did become a bit concerned about the dose when I saw my results after 2 months and was asked to continue at the same dose he said not to worry about the Free T3 that would level itself out.

greygoose profile image
greygoose in reply toHypogirl60

Well, even with taking them with food, you are grossly over-medicated. Your FT3 should not be allowed to go that much over-range. And, being over-medicated can make you feel as bad as being under-medicated. So, maybe that's the problem. I think you increased too fast.

Hypogirl60 profile image
Hypogirl60

Oh I forgot the active b12 range which was pmoI/L 25.1-165.0 @ 189 I looked like I had to much but he calculated I was in the grey zone and deficient. Ferritin range ug/L 13-150.

helvella profile image
helvellaAdministrator

You did, I hope, read that it was an Active B12 test? which has very different ranges to standard serum B12.

Hypogirl60 profile image
Hypogirl60 in reply tohelvella

Yes I was told privately that is the only test labs will do and the naturopath did some kind of calculation to get a reading he used to say I was in the grey area/deficient.

Hypogirl60 profile image
Hypogirl60

Thank you. Haven't seen my GP only naturopath who said I didn't have hashimoto's or prenious anemia although he didn't do any tests for these. I am also a bit concerned he started me on 6 tabs a day of NDT when I should have built up from a low dose, then of course the company I bought the tabs from were and still are out of stock so I came off quite sharply. This site is educating me though.

Hypogirl60 profile image
Hypogirl60

Yes I am beginning to wonder what this well known naturopath was thinking of!!!! Overall I was not impressed.

Hypogirl60 profile image
Hypogirl60

I have 2 cousins from my mothers side of the family with fibromyalgia and 1 cousin from my dads side of the family just diagnosed with hypothyroidism. I think I need retesting with a few extra tests to see if I have antibodies but from what I read conventional endocrinologists and GP's are only interested in TSH.

Hypogirl60 profile image
Hypogirl60

Interesting..... I have endometriosis my mum had cycsitis but I always wondered if it was endo as it stopped after the menopause, no dyslexia. Most of my problems started when I was 39 I am now 57 early on it was migraine and endometriosis. Now it's migraine, fatigue, brain fog and weight gain I also quite often have a sore throat. You are probably right I do need to see the GP for an official diagnosis. I agree about the fibro and have told my cousin I think her condition is hypothyroidism but very extreme.

Hypogirl60 profile image
Hypogirl60

Thank you, had all thes tests last year except Thyroid antibodies. But before that just TSH 5 years ago when a nutritionist had a feeling it was my Thyroid. When I first become ill at 39 no one had a clue I now realise it was my thyroid starting to fail. If only I had known. I need to find a good dr and get on a proper regime and get myself tested again inclusive of thyroid antibodies. I don't know what central or tertiary hypothyroid is will look it up.

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