HI, I'm hoping you lovely people can shed some light on my situation.
I was diagnosed with Hypothyroidism (TSH 10) earlier this year after many, many years of being sub-clinical. I'd had symptoms for years.
I naively thought this was going to be the start of a new me, but after being on Levo, 50 mg for several weeks I felt incredibly ill and after persevering for a couple of months, stopped taking them.
My GP sought the help of an endocrinologist who advised further blood tests after a month off the medication and also to test for prolactin to rule out a pituitary tumour.
Latest results (sorry I don't have the paperwork yet) show FT3 and prolactin to be normal (phew!) and TSH at 6.5. It had reduced from to 1.2 on Levo, yet I felt absolutely dreadful on it.
Apparently my TSH has been high for about 17 years, but thyroid hormones normal. GP has offered me an appointment with endocrinologist which I have accepted but it may take a while and would really appreciate your take on this. I have no complaints about GP practice, btw - just grateful I am being referred.
Tia you lovely people.
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Buntikins
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Feeling worse on treatment can sometimes be down to the brand of tablets you are taking. Some contain things like mannitol or lactose which doesn;t suit some people. Which brand were you on?
lso, while you were hypo a long time your vitamin levels have likely dropped as hypo causes this. Can you get your GP to test your levels of ferritin, folate, B12 and D3? Low levels of these can make issues with thyroid hormone worse.
HI Jaydee. I was on Mercury pharma Levo. The fatigue and brain fog were completely debilitating and I had pain in the kidney area. I feel like I lost a whole summer. My GP is unsure why my TSH has been high for so long when my thyroid hormones have remained in range and therefore doesn't feel prescribing Levo is a good idea (esp as my TSH is now under 10 - the threshold for prescribing meds). I'm grateful I am getting a referral and awaiting the paperwork. I had no idea the meds varied so much. Thank you for that.
Try not to pay too much attention to what your GP says about not needing Levo. Unfortunately GP's have fixed ideas about thyroid treatment that are most times incorrect and not helpful.
Mercury Pharma tablets contain lactose and acacia which some people find makes them ill. Teva is a lactose free brand although again some people have issues with the mannitol in it but worth a try in case it is one that works for you.
Long term hypo, as you have been causes vitamin deficiencies or at least our levels to be low in range. Getting vitamin levels optimal can help enormously tolerate Levo.
Would your GP test your levels of ferritin, folate, B12 and D3? If not then you can do this yourself with a private finger prick blood test available from Medichecks or Blue horizons. See T UK website for discounts.
Thank you so much for that info Jaydee. All vits tested on and normal. Really interesting what you said about the additives in Levo. I felt awful on them. My body instinctively felt I shouldn't be taking them. I was so much more ill than before they were prescribed. I have requested copies of blood tests so I can study them. Thanks again for your insight
Normal vitamin levels are not the same as optimal. Your level could be 5% of the range, but if it wont be good for you and you may have symptoms until it is 50%+ of the range. Get the results printed out by GPs receptionist and post them here. It really will help you.
When people take Levo (aka T4) it doesn't top up a failing thyroid it replaces its output. For a short time many beginners feel great. But after a few days or weeks the body recognises that it is getting extra T4 so the thyroid cuts its own output and you may end up with less than you had before you started the Levo and so you feel even worse than before. The solution is to increase the Levo dose.
50mg is a starting dose, and you should have been tested after 6 - 8 weeks and then given an increase in dose of 25mcg. Then test again after 6 - 8 weeks and repeat the process. A common final dose of Levo for most people is somewhere between 100mcg and 200mcg Levo per day. But since TSH (the value that doctors look at) moves slowly it can take quite a few months to find your ideal dose. It also takes the body quite a bit of time to adjust to having more thyroid hormones.
A healthy person with a healthy thyroid will, usually, have a TSH of somewhere between 1 and 2. Hypothyroid people might do okay with a TSH of just over 1, but many of us need a level below 1. The higher the dose of Levo the lower the TSH will be.
Note - TSH is not produced by the thyroid, it is produced by the pituitary in the brain. I'm simplifying like mad, but the job of TSH is to control the output of the thyroid.
The thyroid itself produces all the body's T4 and about 20% of the body's T3. T4 is a storage hormone, T3 is the active hormone. When the body needs more T3 it converts T4 into T3, and this conversion is done in various organs throughout the body e.g. the gut, the liver, the kidneys.
Doctors think (wrongly) that the TSH is all they need to know about a person's thyroid status. They also think that any test results in range are absolutely fine wherever they are in range. This is why forums like this one exist. So often we get left on inadequate doses of thyroid hormones, often with TSH at the top of the range or under 10 and doctors think we complain we feel terrible because we are drug seekers, hypochondriacs and attention-seekers.
Thank you so much Humanbean. I have suffered fatigue for years,, often getting worse in episodes - but whilst on Levo it was something else - I was totally incapable of normal functioning and had kidney ache/pressure. I really felt my body was being poisoned.
My TSH reduced from 10 to 1.2 after 6 weeks on Levo and at the time I felt OK - not great, just OK. Then I started to feel worse and worse. It felt cumulative and resolved a few days after stopping Levo.
My TSH has increased to 6.5 since stopping Levo but T3 and T4 are normal and apparently have been since my TSH first went out of range in 2003. I have been subclinical for 19 years which is why my GP wondered whether I have a pituitary and not a thyroid one, esp.as Levo made me feel.worse.
Latest tests show Prolactin and a whole range of vits and minerals normal too, which is why I'm being referred to a specialist, for which I am grateful.
Your knowledge has helped me understand so much more, thank you. I feel better equipped to see the endocrinologist now. Thanks so much.
Just to give you an example of why the word "normal" from a doctor should make you a bit wary.
Suppose a ferritin (iron stores) test is given to three patients A, B, and C. The reference range is given as 13 - 150.
Patient A has a result of 18.
Patient B has a result of 82. (i.e. mid range)
Patient C has a result of 145.
Many doctors will say these are all absolutely normal because they are all in range.
But the patient who is likely to feel best is patient B (with the mid-range result) and the patient who is likely to feel worst is Patient A with a very low in range result.
This is why we always suggest that patients find out what their actual results and ranges are, rather than relying on someone telling you the result is "normal".
By optimising nutrient levels we can make huge improvements to how well we feel.
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Regarding you not feeling well on Levo, as well as benefiting from optimising nutrients, doing this can improve your conversion from T4 to T3. And since T3 is the active thyroid hormone, for anyone who had low levels, getting it higher in range is likely to make them feel better.
Another issue is that different makes of Levo suit different people. Levo isn't all the same, and nor does everyone love or hate the same ones.
It is well worth keeping records of the doses you were prescribed and which makes you were taking. If you are prescribed 75mcg of Levo and the pharmacist dispensed a 50mcg tablet and a 25mcg tablet this is usually a bad idea if the tablets aren't by the same maker. If you have side effects you will have no idea which tablet is causing them.
So, keeping records of maker, dose, and symptoms, particularly in the early days, is well worth doing.
Were all your tests done at the same time of day? If so, what time was that? And, once you were on levo, did you leave a gap of 24 hours between your last dose of levo and the blood draw?
If you could give us the exact numbers - results AND ranges - for all three test - TSH, FT4, FT3 - we would be better able to help you. Just ask at reception for a print-out. It is your legal right to have one. They can't refuse. And it's crucial to always get a copy for every blood test to know exactly what has been tested, and what exactly the results are. If you don't understand them, someone here will always be able to help you.
FT4 and FT3 just being 'in-range' doesn't make them 'normal', or optimal for you. The ranges are usually too wide, and so it's where within the range that the result falls that is important, not just being anywhere 'in-range'. Doctors just don't understand that. They don't understand what ranges are, or how they're set, nor how to correctly interpret blood test results, which means that a lot of hypo patients end up being severly under-medicated and feeling ill.
Doctors pretend that the TSH tells them 'everything they need to know', but they doen't even know what TSH is, nor what it does - nor, more importantly, what it doesn't do. Once a TSH gets below 1, it is a very poor indicator of thyroid status, for several reasons. And, going the other way, you are technically hypo when it reaches 3, never mind 10! A euthyroid TSH (with not thyroid problems) is around 1, and never over 2. But doctors don't even know that. And, in some countries, the range only goes up to 3, and you would be treated - i.e. prescribed thyroid hormone replacement - when the TSH goes over that. But, many people start having symptoms when their TSH is around 2. So, in actual fact, the TSH tells us very, very little.
The most important number is the FT3, but that is very rarely tested. And even if it were, most doctors wouldn't understand the results. And, I'm not just saying this to belittle doctors, it's something that several doctors have told me: we don't test the FT3 because we 'can't interpret' it. And, talking about T3 to most doctors is like talking about metaphysics to a three year-old: they have no idea what you're on about. Their education in all things thyroid is sadly lacking.
Hi Greygoose. Thank you so much for that advice. Tests were all done first thing with no meds that morning. I have requested a copy of all results so I can understand more. Thank you so much.
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