Thyroid UK
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Where do I go from here?

A few weeks ago I had a thyroid uptake scan, as a result of an appointment with an endocrinologist at my local hospital. During the meeting I stressed I could not be given Iodine as part of this investigation, due to how extremely unwell it makes me. He agreed I could have the test using an alternative injection solution. (I'm really sorry but I can't remember the name of what it was that was used). I had the test, and I am awaiting a follow up appointment with the Endo department next month regarding the results of this.

In the meantime I saw an immunologist over something else, and during this meeting he said he could see my results from the scan. He said " my thyroid is working fine", but then said I have a "beefy thyroid". We both agreed I would take this up with my endocrinologist during my next appointment as this wasn't really his forte/speciality.

I may be getting ahead of myself here but I know my thyroid isn't working "normally", due to the symptoms I experience. Weight issues, hand tremors, extreme sweating, premature oesteoporosis, hair loss, extreme fatigue, insomnia, ravenous appetite, thin skin, numerous vitamin deficiencies, hypotension, low body temperature etc (they are just a few).

I know I should wait until my consultation but I can't help but wonder/worry is his ever going to be resolved? Ive suffered with this since I was 14, I am now 32. My symptoms became progressively worse over the years. I suffered horrific "attacks" of some description before my periods in my 20's, they were so horrific I had a hysterectomy to put an end to my monthly symptoms. I was able to identify progesterone was a culprit in this, it somehow caused my symptoms (I trialled his via hrt for a few years prior to my op, and it would kick off my "attack" symptoms). I never understood it at the time but I have researched it thoroughly and I've come to the conclusion that I could have been suffering from thyroid storms prior to my menses, but the weird thing was I physically looked like I was suffering with myxodema (hypothyroid symptoms). I have established that progesterone stimulates the thyroid gland, as does Iodine, we'll certainly in my case those two were/are like poison to me. Certainly if they don't stimulate the gland, then they are doing something to have caused/cause me problems.

My thyroid gland swells in two sites. When the upper is swollen I get hand tremors, sweats, insomnia, vision problems, hunger, extreme thirst etc. When the lower part swells I become extremely constipated, I feel cold, get loss of appetite etc.

My bloods always seem to be in range, I don't have antibodies, but I know from my last attack (or whatever they are) last year my TSH was much lower than what it normally is, again still in range.

I used to suffer with a lot of severe anxiety and agitation prior to my menses, not so much now, but it's still a symptom. Unfortunately the health professionals thought I was/am suffering from Anxiety Disorder but I have always been adamant that ALL my symptoms are as a result of a physical problem. Because they are.

I know I shouldn't but I have been worrying about this, worrying that the endo at my next appointment will he just send me away stating there is nothing wrong/nothing can be done? , but I simple cannot carry on being in this state of health.

Does anybody know of anything I can do? Where do I stand in a situation like this? Has anyone else experienced a situation similar to mine? I apologise if maybe these questions are premature considering I haven't had my follow up appointment yet but as it stands my worry is getting the better of me. I just want this resolved now more than anything.

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I'm sorry you have had such a tough time. It took me years too to get anyone to listen. In the end I just did private testing and then showed GP the results. I also have had to self medicate to get well. Are you currently on xny meds?

Do you have a copy of your last bloods? Can you post on here?

The GP's ranges are very large so what they say is normal actually might not be.

Have you had B12 tested? A lot of your symptoms could be related to B12 deficiency.

You say you have multiple vitamin Deficiencies, what are they and what supplements do you take?

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Hi, thank you for your reply. Ive had a full thyroid panel bloods done last year. They're on a previous post, but I will upload them again, but basically everything was within range. (I will repost these previous results).

I was diagnosed with a B12 deficienct a few years back. Once it was established I had severe Oesteopenia my GP tested my B22 and it was 187. Since then I have received injections to treat this but I have also self injected and take supplements. My B12 levels are no really high, but if I stop supplementing they drop abruptly.

I had low folate levels a few years later, again I was prescribed folic acid 5mg for two months, but now I take a B100 complex daily, plus throw in extra folic acid and B12, to ensure levels don't drop.

My iron levels were low previously. My ferritin was fine but my Iron Serum and transferrin saturation were low, again I supplemented. My vitamin D has always been okay.

I have a deficiency in Vitamin E (my gamma tocopherol levels were below range, my alpha tocopherol levels were only just above range so I now take a full spectrum vitamin E supplement.

I am also deficient in Alpha Carotone, so I supplement with a mixed carotenoids complex.

I previously did a 24 hour iodine urine test and it revealed I have a dficiency there also but I cannot supplement with Iodine due to its antagonising effect.

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The "antagonizing effect" no longer exists when iodine is taken properly. Yes. Even for Hashimoto's patients!

We need iodine!

The answer is: Selenium.

Iodine is ideal for those with thyroid antibodies (Hashimoto's) as long as plenty of Selenium is taken prior to the introduction of iodine supplementation and keeping levels optimal throughout. It is a protocol that makes perfect sense to protect the thyroid:

"The cells of the thyroid generate hydrogen peroxide and use it to make thyroid hormone. Selenium protects the thyroid gland from the oxidative damage caused by these reactions. Without adequate selenium, high iodine levels lead to destruction of the thyroid gland cells."

lifeextension.com/protocols...

And thus selenium naturally works to negate the negative effects of high iodine on the thyroid. Most hypothyroid people are selenium deficient due to gastric issues (Leaky Gut, gluten intolerance, etc.) that rob the body of absorption of nutrients.

"Among healthy people in the U.S., a selenium deficiency is believed to be uncommon. However people with certain health conditions such as... Crohn’s disease, and other disorders that impair nutrient absorption are associated with having low selenium levels that can lead to a selenium deficiency."

jeffreydachmd.com/2014/01/s...

We need selenium for many reasons along with many other vital nutrients for restoring thyroid function and regaining full health.

Please read all about the history of how iodine was thought to be the bad guy when it comes to Hashimoto's patients. Of course there was some truth to it, but ultimately this was remedied with the discovery that the addition of selenium to nutritional supplementation when taking iodine by those with thyroid antibodies is a perfect match for helping restore thyroid hormone functioning.

The entire article is in three parts. Part III is the link below and is the conclusion. You can click on links and read it in its entirety.

jeffreydachmd.com/2014/02/i...

Healing Hugs!

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Your symptoms sound similar to my own. Are you on any meds for your thyroid? I'm not being funny here but I've learned over the years not to believe the medical profession in all things to do with my health. I believe you do know your own body much better therefore you are the one that can change things for yourself not them ? After many years of being told all sorts by gps and hospitals I started to look into my symptoms. I've had thyroid issues for over 34 yrs in fact I believe even longer, back then I had no internet etc so couldn't get help from forums and other sufferers. But I looked up Medichecks ( they do a special Thursday discount for thyroid checks ) and had my own bloods done and it came back I have Hashimotos, which explained so much to how I'd been feeling for so long? I changed from levothyroxine to natural desiccated thyroid tablets that I have to source myself as the UK don't support us getting on prescription, which I find totally unacceptable as so many of us have had symptoms relieved so much for coming off a synthetic tablet ( levothyroxine ) that I don't understand why we don't get more support from our NHS. But yes I'd get your bloods done incl B12, D3, ferritin levels and all thyroid TSH T3 T4 etc ( Medichecks do all these for one price ). Then when you get your results you can make the changes that will hopefully help you feel better.

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Hi thank you so much for your reply. No I don't take any medication because I haven't been diagnosed as having either an underactive or overactive thyroid despite my symptoms. Ive had all the main vitamins and minerals tested for in the past and still have them checked periodically. (I've just posted something about those on the above response) I suppose the only thing I can do it maybe get a full thyroid panel test done again. I don't have any antibodies from tests I've had up to now.

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I'm so sorry to hear of your suffering. My daughter who is now 37 had multiple and increasing symptoms from the age of 12 which indicated thyroid and other endocrine problems. Her thyroid tests were always normal and her GP would tell her that that her problem was depression and chronic fatigue syndrome. She rejected this as she knew this was not the case and that beneath it all there was some physical/chemical underlying cause. However, we did not know where to turn for help so she saw a series of recommended private thyroid specialists. These gave her expensive tests private thyroid/endocrine tests none of which gave a clearer picture. None the less she was given a cocktail of thyroid/adrenal/vitamin and mineral supplements which made no difference to her, but which in the case of adrenal meds we now know were dangerous for her actual condition. The late Dr. Lowe in Colorado recommended T3 to her and this was the only thing that helped her as it lifted her metabolism. It raised her pulse rate from 38 to the mid fifties and increased her very low blood pressure.

Four years ago we found a doctor in the USA who carried out numerous health status tests as well as tests for chronic infections. We discovered that for many years she had had chronic Mycotoxin illness, Lyme Disease, HHV6, candida and that she was EXTREMELY ill. Her thyroid dysfunction was merely a symptom of a HUGE underlying problem. Functional medicine is widespread in the USA but it still doesn't seem to have any recognition here in the UK. Thankfully as my daughter and thousands of other UK patients whom we have now met and heard about have discovered, there are doctors outside this country who look at their patients holistically. In the UK doctors are too rigidly confined in their own narrow area of expertise and too many support groups are offended if it is suggested that they need to be much more open minded and consider things that are outside their particular box.

My daughter's US doctor saved her life and she is now recovering. It is a long slow journey because of the complexity of her multiple chronic illnesses which went undetected for so long. Sadly she is not alone. There are countless patients like her in the UK whom we know of, and I dread to think how many more there are who have no idea what is wrong with them because their doctors don't carry out the correct tests and support groups won't help them.

I can PM you some more information if you wish. There is way too much to post it here. Just let me know. Jane x

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Hi thank you so much for your reply. I'm really sorry to hear your daughter suffered for so long with her health issues, though I am really pleased she is now in recovery 😊. I also have had a lot of various testing via the nhs and privately. The doctors seem to be disregarding my bones issues and nutritional deficiencies yet I beleive these are part of the underlying problem. I would be so grateful if you could pm me some information if you wouldn't mind? I appreciate this so much. I just feel like I'm running out of options at this stage and I don't know what to do.

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christina has the possibility of coeliac been looked at given the osteoporosis that would be my first thought

i suspect you have thyroid nodules both over and underactive ones but others are more knowlegable on them

certainly sounds like pernicous aneamia is mixed in with all as well

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Hi thank you for your reply. 😊. I have had an endoscopy a few years ago re; coeliac investigation and also the standard blood test prior to this. Both negative. Also I had the blood test done for pernicious Anemia shortly after I was diagnosed with a B12 deficiency and it was negative (this was approx 5 years ago).

I recently had a thyroid uptake scan and a thyroid ultrasound. I was told from the ultrasound I don't have nodules (from what they could see anyway). I'm not sure whether an uptake scan can identify these but if so there was no mention I had them from this test either. The only thing I've been told is I have a "beefy thyroid".

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You say your TSH has on occasions been a bit low. Is your TSH the only thyroid test you have ever had done? You should have had FT4, and ideally FT3 done too. Would it be possible for you to get your results, at least the most recent ones, and post them on here for comment? Have you ever had your thyroid antibodies checked? It does sound as though you have an autoimmune thyroid condition. It is possible to have hashimotos (which can make you hyper occasionally but mostly hypo) and graves (which makes you hyper) at the same time, but without antibody test results you wouldn't know.

It sounds as though you are ready to take your health into your own hands. You will need a recent blood test, and if your doctor won't do it then you can go to Blue Horizons - search on this forum - and do your own finger-prick blood test. You are entitled to the NHS blood test results if they are recent.

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Hi, thank you for your reply. I have previously had a full thyroid panel done (blood test) including anyibodies. My results are on a previous post, but I will obtain the details and put them on this thread a bit later on. I periodically have my TSH tested, aswell as T4 and have also had my T3 levels tested in the past via the nhs aswell as some antibodies. All come back okay, nothing looks suspicious except I noticed my TSH level seemed somewhat lower than normal, and my TSH always hovered around 14, and that jumped up to 17, even tho that in itself is not ideally at the top of the range. The finger prick blood test you mentioned may be more convenient and ideal in terms of testing my levels, I am going to look at the link info you have posted a bit later on look into that. Thank you 😊

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If we have been suffering with a myriad of symptoms over the years and have had not answers from the medical profession, yes we worry. It is only natural.

One of your comments jumped right out i.e. heavy periods which is one of the many clinical symptoms. Unfortunately, doctors are so poorly trained these days they do not know any at all. At one time all doctors were knowledgeable and treated upon clinical symptoms alone (there were no blood tests then.

I think you've been on a merry-go-round and been given different diagnosis for a symptom rather than a 'whole body treatment' i.e. thyroid hormone replacements.

thyroiduk.org.uk/tuk/about_...

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

Blood tests have to be done at the very earliest possible, fasting (you can drink water) . (TSH is highest early a.m. and drops throughout the day). If you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards. The never test the Frees, i.e. FT4 and FT3 which they should on an occasion.

Ask GP to test B12, Vit D, iron, ferritin and folate as we are usually deficient, contributing to symptoms. We need everything to be optimum.

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My vitamins and minerals are tested regularly (the ones you have mentioned) my doctors don't seem to have an issue in keeping on top of those. I do consume fairly high doses on B vitamins, if I stop my levels drop rapidly. Ive taken Iron periodically to increase my seeum iron and transferrin saturation levels, but my ferritin levels have always been okay. My vitamin D levels are good also. I Struggle with fasting blood tests, I normally can't get out of bed early enough in the morning to have this done, so I've always had my blood tests done in the afternoon (usually anyway). With you being admin there is something I would like to ask if you don't mind? I came across a post a few months back someone had posted regarding the effects of taking too much T3. I briefly looked at it but it described my symptoms exactly. It stated the people with the really high T3 levels became extremely constipated followed by the opposite once the levels decreased. That is what happened to me during these "attacks". I'm really sorry I never looked into this link further as I could've used this to explain to others my symptoms, but this article that was posted basically explained the sequence of events which I encountered during my worst attacks. I'm wondering if you and or anyone else would be able to help me in trying to locate this article? If you are able to at all?

This is what made me think my symptoms were maybe hyperthyroid ones afterall. For whatever reason this happened prior to menses each month and also if I ever consumed Iodine in the way of multivitamins. Also fermented soy has the same effect from taking vitamin k supplements (natto). It's all so confusing because it's as though I experience both ends of the spectrum simultaneously 😩

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You have to make an appointment for a blood test and it should be the very earliest possible, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a 24 hour gap between the dose and the test and take afterwards. If you have thyroid antibodies, these wax and wane and attack your thyroid gland until you become hypo so at times you might feel hyper,

Ask your GP to test the suggestion I made above. He or lab may not do them all but he should do TSH and T4 plus antibodies. but do ask for all of them anyway. You don't want to pay if necessary. You say vitamins etc are done regularly but is B12 above 500 and preferably be nearer 1,000 and Vitamin D should be towards the upper part of the range. Both are pro-hormones with essential jobs within our body.

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Okay I will thank you. My B12 levels are over 1000 and my vitamin D was 90-100 last time it was checked (which was a couple of months ago).

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That's excellent for B12 and D. :)

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Indeed, nice and high levels of each just how I like them to be 😆😊

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I strongly suggest you get full private thyroid and vitamin tests ask others have recommended

thyroiduk.org.uk/tuk/testin...

MediChecks thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular bundles that test everything. £99 DIY finger prick test or option to get private blood draw for small extra fee. Both companies often have money off offers

Always do any thyroid blood test as early in day as possible and fasting as this gives highest TSH, which is main/only result many medics look at.

If you happen to be taking any supplements with biotin in (e.g. vitamin B complex) you need to stop this 4-5 days before any thyroid blood test as this can falsely affect the test results

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Hi thank you for your reply. I have had a full thyroid panel blood test done previously including antibodies testing and all came back on. I know I probably should maybe get this done again perhaps. And yeah I've read somewhere about buotin possible affecting results so when I do I will ensure I stop taking my Bcomplex vitamin 4/5 days prior to it. Thank you so much for your reply and the links you have provided. All valuable information , I really appreciate it.

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What do you mean by "bloods always seem to be in range"? Which tests are you referring to? If the doc is doing only a TSH, you are being malpracticed upon. You need to request results of all the tests run, and post them here.

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Hi thank you for your reply. I'm referring to all the thyroid blood tests I have had done, which include a full panel (which I paid for privately) and the ones my doctor test for which include TSH, T4, and sometimes T3. Also antibodies have been checked. I have previously posted my results on an earlier post.

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I looked at the post you did 10 months ago, which has T3 and T4 results. I am assuming those are not free T3 and T4, which is what I wanted to see since the frees take TBG out of the picture. But, looking at the results anyway, I see that your T3 is about 25% up in range and your T4 is about 18% up in range. Generally, what I would like to see is a T3 that is in the upper half of the range, and yours is not; thus those symptoms you noted. If you are not being treated, then you should be! For comparison: my FT3 (range 2.77-5.27 pg/ml) was about 60% up in range at the last test.

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Hi again, thank you for commenting further. Just to clarify my results are as follows from my bloods taken last year

TSH 0.99 (range 0.40 - 4.00)

T4 110 (range 58 - 161)

FT4 17.2 (range 11.5 -22.7)

FT3 5.5 (range 2.8 - 6.5)

Reverse T3 0.47 (range 0.14 - 0.54)

FT4 : FT3 ratio 3.1 (range 2.00 - 4.5)

Also I had a few more TSH tests via my GP and they dropped further 0.99 but again still within range.

My T4 had always hovered around 14/15 until last year when it crept up to 17. In conjunction with my last attack.

I really have no idea where I stand in all of this but it feels like I'm suffering both ends of the spectrum, certainly overactive in terms of some symptoms but then I had additional symptoms which I'd never experienced before (this came about after my last attack) and the new symptoms would "fit" someone who is hypothyroid.

I don't know what to do about it because I feel like I have explored every avenue possible regarding this, via frequent bloodwork etc. I have only recently discovered I have a "beefy thyroid" whatever that even means.

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Wow, this IS confusing. I don't know what

"beefy thyroid" means, but I would assume the doc is saying that your thyroid is larger than normal. Which could be a normal genetic variation.

What form of treatment are you using? NDT, T3+T4, NDT+T4, or something else?

One thing you should consider is that some of the symptoms of hypothyroid and hyperthyroid are similar. What are the "new" symptoms you're talking about?

Another avenue you could consider, is whether you are over-treated. Your FT3 and FT4 are both higher in range (and Esp. FT4) than mine are. My body will not tolerate an FT4 that is more than about 20% up in range; I keep my FT4 about 15% up in range, and my FT3 about 60% up in range. I discussed this business of feeling better with an FT4 low in the range, and my doc told me he has several patients like this, i.e. who do better when FT4 is kept low in range. Have you experimented at all with various dosage combinations? I currently dose daily with T4=75mcg and T3=10mcg; driving T4 up to 88mcg will eventually drive me into an anxious hyperthyroid-feeling state. If I keep T4 at 75mcg, but push T3 up to 15mcg, I feel a little wired, and my FT3 goes over range top.

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Thank you so much for your response 😊 yes it is all so so confusing, but just to confirm I'm not on any thyroid medication as I have never been diagnosed with either an overactive or underactive thyroid. Ive been having symptoms for years and the only thing I know to date is that I have a "beefy thyroid". My new symptoms I had last year include dark coloured armpits, hair loss and weight gain. Aside this I have hand tremors, agitation, anxiety, extreme thirst, extreme hunger, extreme fatigue but also insomnia. Thin skin, eye issues. My eyes look larger than they used to, vision issues, hypotension, low body temperature but also extreme sweating. Hoarse voice, constipation, sometimes the other, neck swelling........

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Have you examined your fasting and non-fasting blood sugar levels? And how are your Albumin and Total Blood Protein levels? Do you have a creatinine test result, which indicates kidney function?

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My albumin levels are literally right at the top of the range, the highest point they can be without going over range, and periodically my creatinine is low. When it is low it seems to be in conjunction with my "attacks" or post attacks. Blood sugar has been low lots of times, once it was high but usually it's the other way when I'm not feeling great.

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BTW, did the doc who said you have a "beefy" thyroid, say anything about what that means? Just wondering if swelling can be an indication of autoimmunity or inflammation. I understand you do not have TPO or TGB antibodies, correct? Did they check you for TSI (Graves)? Have you ever had a whole-body iodine sufficiency test?

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I'm yet to speak to have a follow up appointment with an endo to discuss the "beefy thyroid". I saw an immunologist the other week over something else and he noticed I'd had the scan and said he could see the results. He said it looked fine, but then said I do have a "beefy thyroid". He didn't say much more and said I need to speak to an endo about it. Is TSI antibodies for graves? If so I don't think I have been tested for these. And no I have never had an iodine sufficiency test. I have only ever done a 24 hour urine test to measure my iodine and the results showed I do have a deficiency. My T3 & T4 were measured too (again on a previous post) and seem to show conflicting results to that of the bloods I had done 😕

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A whole-body iodine sufficiency test would probably be worthwhile. I had one some years back from Jorge Flechas MD. The test seems to be more important for women, in whom low iodine can cause fibroids and other non-thyroid issues. The fact that your thyroid is "beefy" makes me wonder if that is a symptom of low iodine. Perhaps "beefy" is just another term for small goiter?

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dark armpits and the hair loss and weight gain could very well be Addisons and that would start to explain a lot of your symptoms

the other possibility is circular Cushings which is a real oddity and a tough one to get diagnosed

any chance you like near Kent or Wales

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Ive had the test done for addisons last year, (it made me feel really unwell) it worsened my symptoms. It did cross my mind it being cushings due to some of my symptoms..... I have had a dexamethsone test done to measure my cortisol levels and also just ordinary blood tests and these came back negative, tho ideally I did want this looking into further. I Live in Liverpool so not far from Wales

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I have heard the standard MD stim test for adrenal problems can be uncomfortable. I would be inclined to recommend a 24-hour urine cortisol test, and/or a 5-sample saliva test. These are non-invasive tests which should be able to reveal if there is a problem.

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That's what I wanted, the 24 hour urine test. I don't think the blood tests investigations are 100% accurate/reliableanyway. Whatever they injected me with (I think it was ACTH?) made my body temp even lower than what is was and my blood pressure low aswell 😕 not a very nice experience

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Hashi's antibodies don't always show up to be clinically diagnosed. The proof of the Hashi's is told by the symptoms you experience. Some wait for years for the validation they have Hashi's. In the meantime, they waste valuable time reversing their decline in health.

Hashi's produces both hypo and hyper symptoms and often different phases of such, sometimes fluctuating rather wildly.

The blog below should help you understand what you're experiencing and how you can heal your body naturally. It's a great start. This young lady took matters into her own hands. A nutritionist by profession, she made quick work of reversing her Hashimoto's. Not unprecedented either... but the vast majority of conventional doctors have no clue of such things.

unboundwellness.com/how-i-r...

Healing Hugs!

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Thank you so much for your response. All very valuable information you have provided, thank you so much. I will look at the links you have shared with me 😊 very much appreciated

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