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Thyroid UK
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NDT feeling worse please help

only a week on WP half a grain I feel incredibly ill my legs are throbbing and aching swollen, feel nauseous heart palpitations and I have zero energy I’ve been sleeping all day. I’m my own carer so have no one to help me make a meal or anything else. Shall I go down to a quarter grain? Or persevere? Does everyone feel ill when they start NDT? I’m crying because this I had such high hopes and scared I’ve just waisted so much money on these pills and feel like my body is rejecting them. Please help x

36 Replies
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Are you sure they are legitimate NDT ? Because the reaction sounds extreme for just 1/2grain

What meds were you on before ?

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I wasn’t on anything before I’m sure they are legit as I got the prescription for them from a private endo and got the WP sent from a U.K. pharmacy. I don’t know wether to stop or cut down I’m feeling so ill x

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Give your body a rest for a few days and then start on 1/4 tablet. Sometimes some tablets do not agree with us but I wouldn't have thought WP thyroid wouldn't have had such an affect unless your dose is larger than you imagine. It could be that 1/2 gr (50mcg approx to levo) is a little too much inititally.

Hopefully you will be able to cope with 1/4 grain. After two weeks, if you are able to keep on it, your body might be o.k. You take it on an empty stomach, usually first thing, with one full glass of water and wait an hour before eating.

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Thank you so much. My WP is 1 grain and I’ve been cutting them in half. I will do what you say and give my body a rest then take quarter like you said. Thank you again for this advice

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It seems like a trial at times when the hormone replacements we are taking doesn't give us the effect we want.

I've just noticed your comment below that you have CFS/Fibro and I have read that this could be due to thyroid hormone resistance and that T3 alone - sometimes in a higher dose than is usual works for those people. This is a link from a doctor who was an Adviser to Thyroiduk before his death through an accident.

web.archive.org/web/2010103...

There are also other topics at the top of the page.

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I will read it now that’s very sad that he has died. I really appreciate your help x

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Hi I have Cfs/ fbro too and would be interesting in reading the link but I can't find where he talks about T3 as I to felt completely different as in well on T3 only so but interesting to read can you let me know where about's it is in the link. thanks

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The 'topics' and links are within the very first link above i.e. "There are also other topics at the top of the page". All of them give us information of some sort. :)

web.archive.org/web/2010103...

Even if we don't have 'a resistance' many feel much better with T3 added to T4 or T3 alone, as a number of Research Teams (worldwide) have found a T4/T3 works better for many hypothyroid people. :) As well as one of the Adviser's to TUK who is a researcher/scientist.

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It sounds like your adrenals are struggling to cope with the influx of thyroid hormones. Have you had an adrenal saliva test?

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No, but had a cortisone test at the hospital last year which came back normal. I feel you maybe right, I’ve cfs/ fibro so I think that’s effecting my adrenals

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Thank you for your reply, Seeing the private endo and paying for the WP has left me almost broke so I can’t afford any tests at the moment I just want to feel well or even a bit better. I will just have to be patient I guess x

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Sounds like your adrenals are very stressed and you are severely Hypothyroid with resulting vitamin deficiencies .....my husband went right into Scurvy and Beri Beri despite a perfect diet ....massively increase your intake of fresh oranges, satsumas, kiwi fruit, eat liver once a week , take compound vitamin B ...its disgusting that you were forced to beggar yourself with private Endo fees and private prescriptions

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Yes cfs seems to be an adrenal related illness. Cortisol ranges in the NHS are so wide and ignore partial adrenal insuffiency.

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Timetraveler,

You have not wasted your money on WP Thyroid. It Is excellent and has bought me well being.

Elevated thyroid antibodies can make people more susceptible to allergies/intolerances as puts the body in a high state of immune response and because you have Hashimotos, you need to raise WP Thyroid at a rate that keeps thyroid activity at a minimum. Except, it sounds as if your bodies rate of WP Thyroid acceptance (probably the T3) is slower than the rate required to keep TSH suppressed.

Nutrient deficiencies, especially iron and cortisol hormone appear to have a profound effect on many members when introducing NDT. If you ensure your iron levels are optimal, cortisol levels are adequate and try reducing thyroid antibody levels, you may be able to raise NDT further and bring about some sort of well being.

ps: I also take protein powder which has had an excellent effect.

.

Importance of Iron & Cortisol when medicating NDT.

stopthethyroidmadness.com/i...

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Thank you, my antibodies were over a 1,000 I’m trying to get them down. What protein powder do you take as can’t seem to find one without soy in. Thanks again for helping me I just want to be well x

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Timetraveler66,

I have iron overload (ironic on a thyroid forum ! 😳 ... ) so have to be careful but supplement with Pulsin' Rice or Pea Protein in small amounts. The T3 in NDT works beautifully with protein as long as you have enough cortisol to ensure enough glucose to take the T3 into the cells.

If you can't tolerate NDT you need to be looking at possible iron and/or cortisol deficiencies that will hinder your progress in raising NDT.

Thyroid antibodies may reduce with a gluten free diet (but you need to be committed) and supplementing selenium. I got mine down with this protocol.

.

Hashi & Gluten connection

chriskresser.com/the-gluten...

.

Selenium Reduces Thyroid antibodies

thyroidpharmacist.com/artic...

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Thank you for the information please can you tell me if my 3 month supply of WP will stay fresh if I keep them in th cupboard or do you strore in the fridge? Thank you

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Timetraveler,

There will be a lot number and expiry date. My last lot had 23 months on them.

I just keep mine in a cupboard out of direct heat & sun light.

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Hi yes so much good advice as me too, I couldn't tolerate even 50 levo a whike ago and literally had to crawl upstairs, yes it was adrenals for me, the urine tests were fine by NHS but saliva test showed up pretty wonky but hanging on in there, saw Dr Peatfield who diagnosed adrenal insufficiency straight away by older fashioned metabolic tests, - taken adrenal support (mine Adrenavive 11) maybe talk to the consultant at Nutri as she has so much knowledge, or s,some like this, they also sell adrenal support, just saying energy came back, I can hardly believe it myself re energy, still not quite there, I expect I could have been diagnosed as Cfs if this is what it is, Yes the vitamins important, it all comes together more trust me on this one. important gut healing, otherwise vitamins leak out of porous lining, and yes, GF works for me, not a saint do slip up, Doesn't take long to improve gut

I'm sure once these have recovered, and body got the right vitamin levels, the thyroid hormone will be absolutely ok, for me. I got up to 75/100 levo, just my t3 still low so onto next step. Xx

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Reverse t3?

I had a horrible reverse t3 when I first started taking levothyroxine... Even though the desiccated thyroid has some t3 your body might be turning too much to t4 into reverse t3 which makes it inert and competes for t3 receptor sites.

I'm so sorry you're feeling this way and I can just feel the disappointment... I'm so sorry

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When we take levothyroxine i.e. T4, or a product which contains T4 - it first converts to RT3 and then into T3. This is an excerpt from the following link:-

"Some patients do have impaired conversion of T4 to T3. However, the available scientific evidence suggests that at the longest, impaired conversion lasts only a few weeks. I know of no scientific evidence supporting Dr. Dennis Wilson’s speculation that some patients have chronically impaired conversion of T4 to T3. When patients have impaired T4 to T3 conversion, they also have a predictable pattern of lab test results. However, despite extensive testing, one other researcher and I have never found this predictable lab test pattern in fibromyalgia outpatients.

web.archive.org/web/2010103...

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The available evidence is faulty.

From 8 months experience, I can explain that the impaired conversion goes on as long as conversion occurs in the body, and the rT3 levels climb as more LT4 is administered.

Because of the circadian rhythm of the body’s processes, the suffering abates briefly every 24 hours.

I find it cruelly immoral, as Dr Lowe points out, that clinicians deny things that they simply are incapable of recognizing.

Dr Lowe’s book can be borrowed from libraries around the world. It’s quite extensive and very educational.

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When I was on NDT as it has T3 in it. I felt much better splitting my dose. As the T3 only has a short life When I first started taking it I took one tablet 60mg/ 1 grainin the morning. I always felt bad by mid afternoon. When I had a lightbulb moment about the T3 element and split my dose I felt much better. When I was on it my T4 levels were always too low and that didn’t help me either on a small dose of 1 grain a day. I’ve now switched to liquid Levothyroxine in the advise of my private Endocrinologist. That’s ok if you’re T4 to T3 conversion is ok. The one great thing for me with the liquid is that you can dose accurately each day as you draw it from the bottle in a syringe and can measure properly to you needs.

B12, D, iron and blood pressure are important when looking at the whole picture. I too suffer from drops in cortisol. I’ve had many results under the range, even at 9am. I I had a synacthen test and passed. Have you had a synacthen test.

P

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ND Thyroid would not be my first choice for Fibromyalgia. ... Fibromyalgia usually responds well to T3. ... As far as the other symptoms you mention: Is it possible that you may be allergic to Pork?

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I only eat fish and chicken once a week- pork probably doesn’t agree with me I’m sure now you’ve said. I’ve stopped the WP I had to ask myself how long was I going to take something that was making me feel incredibly 100 times worse.

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Most of the symptoms you’re describing are of hyperthyroidism, or too much hormone hitting your body. When I stated on HRT I had some symptoms like yours, but not so extreme. But I started on 1/2 grain equivalent. You’ve been given a lot to start and your body has acclimated to your fibromyalgia.

Stopping for one day should bring relief.

Check back in tomorrow.

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I have never taken ndt but when I have changed my brand or dosage I have felt ill for months and then slowly start to feel better so maybe its just your body getting used to it. Dont know what the science is behind that though, would be interesting if anyone knew?

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Thank you for your reply I remember my nhs endo telling me a year ago that everyone feels worse before they get better- he didn’t say why but I thought I was going to die I was on levo I hurt in places I didn’t know exsisted my body swelled up like a balloon but he just said it’s normal for some people. I’m sorry to hear you felt ill for ages, I’m so glad your feeling okay now thanks for helping I’m desperate for any advice I get is much appreciated.

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how are you doing on WP tyroid? I'm not feeling so great on it :(

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Sorry to hear your Not good on them, I’ve stopped taking them as was getting worse I’m going down the t3 route now but that’s another rabbit hole I feel at a loss with it all to be honest x

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can you please let me know what were your symptoms? i feel bone pain, tires, losing a lot of hair, dry eyes, mouth and skin :(

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Same, the effect on my brain was the most scary as I felt detached from my body, I don’t care if I lose my hair myself I’ll just buy a wig, I just want to feel alive. I have long hair and would miss it but if that’s the price for being well I’ll take it. Apparently hair loss stops after 3-4 months. Antidepressants cause hair loss too isn’t it so sad we have to go through this x

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horrible, the thyroid issues are horrendous it triggered so many other issues for be, gallbladder, reflux, gastritis from the meds :(

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I hope things improve for you I really do.please update me. and if you want to pm me to offload you can x

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Thank you, it's been hard :(

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I had to start at 1/4 grain... originally my Dr. prescribed 1 grain, and it made me so ill that I quit taking it for a long time. Started back at 1/4, 10 days, 1/2, 10 days, 3/4, 10 days, 1 grain. Stayed there for 6 weeks. Then started dosing up again by 1/4 every 2 weeks until I felt well.

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