Thyroid UK
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Hello everybody

Hi, I am new to the site. 49 yo female in East Sussex. Have had hypothyroidism for 20+ years (diagnosed) though I believe I had this for many years before it was finally recognised as such. I had the years of struggle, being told nothing was wrong, its kids, its stress, your thyroid results are fine. Well they were not and eventually with antibodies in thousands and a sky high TSH I was prescribed Thyroxine which did absolutely nothing for the following few years. Turned to the internet and found groups like this and went to see Dr Durrant-Peatfield. After many years of feeling awful (you all know the score on that one) I was recommend to take Armour and a cocktail of supplements and slowly I got my life back. For many years everything was fine until I could no longer get the Armour (there was some kind of shortage) and they then quadrupled the price and I went for a lower cost option. I went on Naturethroid and have spent the past 3 years deteriorating, gained nearly four stone, have a pulse rate in low 50's and feel exhausted all the time. My whole skeleton aches sometimes so bad it wakes me up at night. I have been to my GP who referred me to an Endo (first time ever) and guess what, he has insisted I am hyperthyroid and must stop taking this unregulated medication immediately as I am making myself ill. He made me stop all medication for a few weeks then ordered blood test (I am waiting on the results as they are going back to him at the hospital) I feel like I am in the land of the living dead! He has prescribed 100mcg of levothyroxine, I previously was taking 3 grain (195mg) of Naturethroid. I do not get any heart palpations or sweats but the report the endo sent to my doctor said implied i was a liar!

Blood results from June as follows:-

Free T4 17

T3 14.1

TSH 0.01

This is all that is on the report with no reference ranges etc.

I am feeling really low and dont know what to do, after all these years I finally see an Endo and he did exactly what I thought they would do, make me stop the medication. I do not understand why the Naturethroid was not working as well as Armour? I thought they were the same thing.,Why is my pulse rate so low, when I was "well" it was between 75-85 on average. I just want to feel better and get back to normal. Any feedback or advice gratefully received.

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Impossible to understand blood test results without ranges, but that T3 does look very high. Normally range is about ( 3.2 - 6)

But it also depends how long you took your thyroid hormones before blood test. Any that contain T3 should be 12 hours before. With blood test as early as possible in morning and fasting, take meds immediately after blood draw.

If antibodies were ever tested and found high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working. Have these been tested, if not ask that they are.

Always get actual results and ranges on all blood tests

The reason you need to know if it's Hashimoto's is that very likely hidden food intolerances can be causing issues, most common by far is gluten.

Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

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DAB68 Just throwing out some questions that jump to mind.

Is there a reason you didn't consult with Dr P again?

Whilst you were on NDT, were you monitoring you levels at all by having thyroid tests from time to time, this would have alerted you to your rising FT3.

There are other brands of NDT, why didn't you try a different one when you knew NatureThroid wasn't helping.

Your June results don't show Hyperthyroidism, you can't become hyperthyroid if you have an underactive thyroid. What they do show, through your FT3 result, that you are overmedicated. NDT often suppresses TSH, and FT4 will generally be lower in it's range, but FT3 should stay within range, and that's likely to be near the upper end.

Did you try lowering your dose of NatureThroid?

Maybe you would be better on a combination of levo and T3 so that you can tweak the doses rather than having the fixed doses in NDT.

Have you had vitamins and minerals tested - Vit D, B12, Folate, Ferritin?

Have adrenals been tested?

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This doesn't look like a Hashi's flare result, so either you took your NDT too close to the blood draw, or you're over-medicated.

I have to say, one doesn't always get 'hyper' symptoms when over-medicated. Been there, done that. But, it can make you feel just generally unwell.

Obviously, the answer is not to put you back on 100 mcg levo - that is just stupid and typical of endos (why does any hypo every bother to see them?!?). What would be a good idea is to slowly reduce your NDT - about 1/4 grain every two weeks, until you get to two grains, then hold for six weeks and test. If you are buying your own NDT, there's no reason you have to do what the endo says.

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Good evening everyone, firstly thank you for taking the time to respond. I know I should have been monitored and had blood tests over the years but the reason I didnt is because I did not want my medication to be stopped, i.e. the position I am in now, having experienced the view of the medical profession in UK to NDT I decided to keep it to myself. As stupid as it appears I just didnt think to try another type of NDT, I spoke to the chemist where I purchase and he told me the Naturethroid was same as Armour and i just accepted this. I confirm I do have Hashimoto thyroid, my father had it, my sister has it and I am sure one of my sons has it to. I am partly to blame for the mess I am in, I have had so much going on in my life these past few years, all really stressful stuff that I have forgotten about myself. I was religious taking my supplements etc but have just fallen off the wagon, I never ate gluten but even that had crept back in. Things have become so bad that I am struggling to do my job any more, I am fortunate that I have a very rewarding, but demanding career with a huge amount of responsibility and now I can barely string together a sentence at times. I have been doing some reading up this week and wonder if all the stress in past 3 years has taken its toll on my health and my system, worn out adrenals? I had unbelievably bad stress, parent dying of cancer, housing issues,problem with kids, partner had emergency reconstructive surgery on his spine or faced paralysis, stress at work, the list goes on. I had to be the breadwinner for two years and i reached a point earlier this year where I had a melt down. I just trooper on normally but I think my body had enough and was telling me so. On a positive note I am taking control of this situation, that Endo can go to hell, I am not stopping the NDT, this week I have had symptoms that havent had for years and during parts of the day can barely walk from one end of house to the other, numb hands and feet and totally exhausted. My partner has been so worried about me he is calling all the time to make sure I am still alive! My pulse is dropping to early forties in the morning when I wake up and maximum during day has been 54 but my GP and hospital do not seem in the least bit concerned. One thing I did forget to mention was that at the beginning of the year my doctor did find that my Vitamin D levels were really low and i started taking a supplement I bought from Holland and Barrett but I havent been good at taking it. So now I am sorting my life out, I have all the supplement and have put them out so I remember to take them each day and am considering taking others and something for the adrenals. I have cut all the crap, sugar and flour from my diet and will stop all alcohol. I would join a gym but at the moment I wouldnt be able to do much! I today took the levothyroxine 100mcg and half a Naturethroid which is around 90mcg and this evening my hands are semi warm, bliss. Once again thank you to you all and I may well be calling upon you for specific advice about sourcing products, tests etc.

Regards

Denise

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