Is it the adrenals or the thyroid?: Hi all,I... - Thyroid UK

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Is it the adrenals or the thyroid?

irme profile image
irme
38 Replies

Hi all,I would like some help please and apologies in advance for the long post but my condition is a bit confusing.

In 2011 my blood pressure got a sudden up to 16/10 and I started having trouble sleeping at night,in 2012 I was constantly waking up between 1-3 am and falling asleep again at 6 am and started gaining weight. Until 2014 I had gained 25 kgs with no major dietary changes.The more I was working out the more I was gaining.In 2015 I fell sick with the flu which lasted for a month,quite some time for the flu. I couldn't recover no matter the natural remedies or the conventional meds I was being prescribed. During that month(February 2015) I had a cardiac incident where my heart rate fell to 37 bpm and I was feeling as if I was about to pass out? As if I was having a stroke or as if something was clotting in my head?It is still hard to tell.B/P was normal 10/6.5 .I went to my GP who pretty much insinuated that I was entering peri and dismissed me. I visited a cardiologist who said that I was hypertensive and prescribed a light medication for hypertension. In March 2015 my temp fell to 34.6 and it is still there. In May 2015 I passed out in a bus on my way to work. I was diagnosed at the hospital with B12 deficiency of 109. In June 2015 I started suffering from bloating,rapid weight loss(29 minus in 5 months),cognitive issues,memory loss,increased debilitating fatigue,double-blurry vision,PMS,joint pains,back pains,shooting pains,vertigo,hair loss,trembling,increased anxiety and ataxia.

Among all those goodies I had those sudden incidents when I am feeling that I will faint or that something is seriously wrong with me and my heart rate goes up to 125 bpm and my b/p rises to 18/11.When they happen in daytime I can get over them by moving around after the first dizziness goes away. But when they happen at night they are scary. At first I get a generalized feeling of impending death( no,it is not a panic attack although it looks and certainly feels like one). Then I get sweaty and a hot rush all over my body and that's when my heart starts galloping in my chest. My blood pressures goes from 8 /5 to 18/10 and I get the shakes,my teeth chattering,I feel so so freezing cold as if life has been drained out of me. This usually lasts for 30-40 minutes,last time it lasted 5 hours so I had to call help line for advice and they sent an ambulance.

I have been to 28 doctors of all specialties,most of them prescribed me antidepressants . In January 2016 I had extremely low blood sugars. Like 25 or 32mg/dL but no doctor would believe me. After the last incident that was severe- I was with 125 bpm for 5 hours- I was hospitalized for the day and referred to a new cardiologist who didn't think that I was a nutcase as his colleagues did ,but that I have either thyroid or adrenal issues. He ordered a bunch of labs and here's what showed up in my labs:

HbA1c 4.6 (range 4.8-6)

Ca 10.1(8.5-10)

TSH 4.67 (0.27-4.2)

8am Cortisol 22.6 (4.3-22.4)

8pm Cortisol 2(2.3-11.9)

24hr urine Cortisol 137 (20-130)

ACTH 9.6 (7-64)

FT4 1.07 (0.7-2)

Now,I visited an end who said that she couldn't figure out what is going on with me and that I should take an antidepressant. She couldn't even figure out why my HbA1c was so low. At least now I can prove that I had serious hypoglycemic incidents. But still I can't find a decent doctor to get a diagnosis for either thyroid or adrenal issues.

Good thing that adenoma/insulinoma/phaeocytochroma have been ruled out with tests in the hospital . But since then the 2 endos don't seem to be willing to provide a diagnosis. I am with no medication or medical advise what to do next to recover. Only my cardio has provided me some advise how to stop those tachycardias.He suspects my adrenals because how I describe it looks like a panic attack but he said that it isn't . Probably an adrenaline rush.A hormone rush with certainty.

My question is,has anybody had something similar to those incidents that are tormenting me? Any clues if I should examine my adrenals or my thyroid?

Thank you all in advance!

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38 Replies
irme profile image
irme

Thanks for replying. I am outside the UK

irme profile image
irme

FT4 1.07

AntiTPO 8.6

AntiTG 10

HCT 38.4

RBC 4.10

MCV 93.7

PLT 242

That's all the tests that were done.No free T3 no reverse T3,no ferritin,especially the second endo that I went to,she said that she couldn't explain my lab results. None of the two endos I've been to has ordered a decent or a full blood test,the results that I have are from the blood work that my cardio had ordered when I visited after the last cardiac event.Thank you again.

Can I clarify what you mean by BP of 18/11? Do you mean 180/110? What does 125 bpm mean? Do you mean that you diastolic was 125

What hypertensives have you been given?

Your description sounds just like me, I had a hypertensive episode that culminated in encephalopathy, and nearly died. I have Changes to my brain shown on MRI. One year later I have a diagnosis of hypothyroid. Hypothyroid can cause uncontrolled rises in BP, what they call malignant hypertension in UK

I had double vision, dizziness, crushing headaches, mental confusion etc etc. No one could work out why my BP was so high. Mine was ignored for months resulting in the encephalopathic episode.

Luckily I have a good GP and cardiologist and things are slowly getting sorted.

I am not a doctor, but what you are going through sounds v similar to me.

irme profile image
irme in reply to

Thank you so much for replying and apologies for any confusion in my writing,see I had to deal with med stuff all of the sudden. Indeed I meant 180/110 and by bpm I meant 125 beats per minute.Normally I have a blood pressure of 80 to 50 but when I have these events it rises up to 17 or 18. I was prescribed Lobivon 5mg but when my blood pressured got down to extreme lows I was told to cut off.I do have head aches but not crashing ones. The rest of my symptoms seem to be similar to what you describe. Thank you again and I wish you all the best.

galathea profile image
galathea

It rather sounds like you have both adrenal and thyroid issues...... The way to tell, is to take your temperatures regularly and plot the daily average. I wrote a post some time ago about it...... Here's the link.....

healthunlocked.com/thyroidu...

Xx g

irme profile image
irme in reply to galathea

I am suspecting the same,both thyroid and adrenal disorder. Thanks so much for posting the link!

Miki80 profile image
Miki80

Hi

I've been having very similar symptoms for 2 years now. I actually collapse but cannot find a cause, I too have adrenal fatigue and hypothyroidism. I'd love nothing more than an answer to this living nightmare because for a long time I've been merely existing.

Pulse is always high, BP often too seen a Cardio and Neuro and all tests normal! Hope you get answers soon- and let me know lol

irme profile image
irme in reply to Miki80

You spoke the truth: Merely existing. Nothing more than that. Also I have been suffering so much the past two years as well. I don't know if I will ever be able to find a doctor who could or would diagnose this mess of symptoms but if I ever do or if I ever find the cause I will surely let you know. Have you talked to an endocrinologist?

Miki80 profile image
Miki80 in reply to irme

I've seen 3 even paid to see 1- waste of time personally speaking they're obsessed with TSH levels and little else

irme profile image
irme in reply to Miki80

I agree. May I ask you,how do you counter this condition we are dealing with? I had a small improvement by changing my diet excluding grains,caffeine and sugar and cutting back on fruit but still those heart events don't stop. They show out of the blue for no particular reason. I thought it could be MS,Lyme's or PMR,I don't know

Miki80 profile image
Miki80 in reply to irme

Yep at my worst I've thought I had MS, Lyme and even Leaukemia but I soldier on and take T3 and NDT and Holy Basil and Magnolia Bark for adrenals as well as Selenium Magnesium and Vit C

SmallBlueThing profile image
SmallBlueThing

I have some similar signs and symptoms (others are completely different), and have been checked for pheochromocytoma, Conn's and Cushing's, yet the tests came back normal. Nevertheless, my consultant decided to add a small dose of the diuretic Amiloride, and my hypertension is now under control.

irme profile image
irme in reply to SmallBlueThing

Thank you so much,what's so confusing is that most of the tests that I have done come back normal or slightly off range like my TSH or cortisol levels. Just slightly above normal

SmallBlueThing profile image
SmallBlueThing in reply to irme

A potassium-sparing diuretic seems to be the standard treatment in addition to or instead of surgery for endocrine hypertension. I didn't think I had pheochromocytoma (a Prof ordered that test), but Conn's seemed a good fit. Apparently, there are 20 thresholds for the aldosterone:renin ratio that can lead to a diagnosis, but it probably takes Prof Morris Brown's team for the interpretation. Low potassium was a clue, in my case. So, I don't yet have a diagnosis, but I do have a treatment that works, after nearly three years of niggling.

irme profile image
irme in reply to SmallBlueThing

I was familiar only with Cushing's /Addison's diseases. I didn't have a clue about Conn's but after further reading looks like it's not my case. I am not constantly hypotensive with blood pressure lows of 80/50 and 70/40 ,pretty much like a zombie. On the other hand I haven't checked my aldosterone levels,only my electrolytes and they came back normal.Many many thanks for your reply!

Learner1 profile image
Learner1

Well, something's clearly wrong. You need to find the right doctor, and skip the antidepressants, which eil just complicate things.

You didn't say what country you're in, but can you find a doctor who practices "functional medicine"? Look at the 21st Century Medicine white paper on the Institute for Functional Medicine website - it explains the concepts.

I've had a whole host of weird symptoms and it's amazing what has come up on my journey that's all backed by good science but conventional doctors can't figure out.

Some things to look at:

DUTCH test - dried urine test of comprehensive hormones - see their website for details

Pituitary function

Aldosterone/renin

Other autoimmune disease - anti nuclear antibodies, etc.

RBC magnesium

Heavy metal toxicity - arsenic, lead , cadmium, mercury

Infections - Lyme and related, herpes family, chlamydia pneumoniae and mycoplasma, mold, etc.

Intestinal parasites

Other nutrient deficiencies (Genova Diagnostics NutrEval, Spectracell)

Full thyroid panel

Serum ferritin, LDH, hsCRP

Hang in there, be persistent, you are not alone!! There are answers!! Be good to yourself, reduce stress, eat a whole food, nutrient dense, omnivore diet - skip gluten, soy and dairy. Get moderate exercise every day, sunshine if you can, and find laughter and joy.

And keep digging...

irme profile image
irme in reply to Learner1

I was prescribed antidepressants just because I was insisting that something was wrong . Fortunately I didn't take any as I read on the health forums that they do more harm than good. I had my thyroid scanned for Hashi,I don't have any signs other than the elevated TSH. I wasn't scanned or tested for MS and Lyme's (I insisted on Lyme's as my job includes being outdoors for long periods). I paid myself for testing H Pylori antibodies because dr's weren't ordering the test.IgM was 1.1 which is the upper limit. Yes, I am always borderline. I was dismissed again as negative,GP said he can't interpret the results,gastro said I should take antibiotics.I refused to take antibiotics because my immune is low and can't handle anyhow strong medication. I had elevated cholesterol of 280 and triglycerides of 190 and now they dropped to 80 and 47 respectively?Sometimes I do think I am totally going out of my mind. Nothing comes up but I am sick with severe symptoms. I was a fully active person with great dietary habits and now I am just a ghost of who I used to be.I feel that my systems are slowing down dangerously.Thanks for letting me know for the functional medicine,had no idea,will look into it :) Maybe there is some hope after all .There is a chance for heavy metal toxicity but I would be having more neuro symtoms,I think.. I was checked by a neurosurgeon for the ataxia I had and he said that he didn;t find something wrong and I was dismissed again.

Thank you again!

Learner1 profile image
Learner1

You don't need neuro symptoms for heavy metal toxicity - they can wreak havoc on other systems of your body. Sounds like you haven't had someone really good go through a good battery of tests on you to see what's wrong.

There are MDs, NDs, DOs, and DId who all have training in functional medicine. You need someone who looks at your body as a "system of systems" to tease out what's wrong. Please be persistent in finding answers and continue to advocate for yourself. Something us seriously wrong and you need to find out what's going on. The doctors you've been seeing clearly don't know how to help you.

PM me if you have questions.

All the best...

marigold22 profile image
marigold22

I had many of your symptoms but I was not taking my own blood pressure etc as I had a baby at the time and this was 1981. But I certainly had the 'impending death' thing at night, and during the day felt like I was in the middle of a heart attack or stroke. In the end it was definitely longterm low thyroid which had become extremely low by the time it was diagnosed. Also because the thyroid had been low for such a long time, the adrenals had gone low. This is because when the thyroid is low, the adrenals kick in and try to keep the body going without the help of the thyroid. I would recommend getting a variety of blood tests done by Blue Horizon (private blood test company). I'm not medically trained but I would start with the Thyroid 12 test, the antibodies test (if one or both of them are high, it means you have Hashimotos disease), and a cortisol test (to see what your adrenals are doing). If your thyroid test comes back as low I suggest you ask here for best supplier of T3. Although you may be ok with T4 (levothyroxine). I'm only really relaying what happened to me and giving my best advice. Best of luck x

irme profile image
irme in reply to marigold22

Thank you so much for your reply. The truth is that I do have low thyroid symptoms at times but scans came clean and only the weight gain and the elevated TSH point to Hashimoto's. I do have family history with my mom,sister and two sons with Hashimoto's but the two endocrinologists I have been consulting haven't detected something wrong in the scans.But it makes sense. Thanks again!

Kitten1978 profile image
Kitten1978 in reply to irme

I don't think you can rule out Hashi on the basis of the thyroid ultrasound. You TSH is elevated and you have symptoms, which are consistent with hypothyroidism. See thyroiduk.org.uk/tuk/about_...

It might be worth testing for thyroid antibodies BUT, apparently, not all Hasimoto sufferers have detectable thyroid antibodies.

irme profile image
irme in reply to Kitten1978

Is it really possible to have low thyroid and not showing up in the scans? Could it be missed by the endocrinologists? Thanks for replying!

Kitten1978 profile image
Kitten1978 in reply to irme

Hi Irme,

I'm not a medic but my common sense tells me that if an "abnormality" (in this case thyroid lesions) is in its early stage of development it may not show. Medical tests are not 100% accurate. Advanced Hashi will be seen on the ultrasound scan. I had thyroid ultrasound scan and it did show lesions on my right thyroid nodule but not on the left one.

Doctors are only humans and, sadly for us, they are fully capable of missing a diagnosis or providing a wrong one! It did happen to me twice with minor and easily treatable health issues. I ended up being misdiagnosed, I then diagnosed myself and went to see a different doctor, presented them with a list of symptoms which I found through google, literally told them "this is what I've got, and this is what you need to prescribe to treat me". They complied and symptoms disappeared. It would have been funny if it hadn't been so tragic... If they make mistakes misdiagnosing minor health problems, they certainly can make mistakes diagnosis more complex ones. Hypothyroidism is a systemic disease and it causes multiple health problems e.g. adrenal issues, cardiovascular problems, digestive issues, mental health issuesetc. It's too complex for many time-pressured medics.

It may be worth repeating your TSH test (as early in the morning as possible!), and testing for thyroid antibodies to see whether you have Hashimoto. If you have Hashi the sooner you start taking thyroid hormones, the better. Take care x

Hi Irme, read your post with great interest. I'm unable to comment on some things, but others I could have written myself re the heart rate issues.

I had similar heart rate issues which started some years ago. My heart rate would rise totally out of the blue to anything from 100 bpm to 180bpm. I found it very disturbing and was taken by ambulance to hospital on a couple of occasions. On those occasions while they were monitoring (wide eyes looking in disbelief at the monitor) and deciding what to do, heart rate would return to sinus rhythm also out of the blue. My husband used to say he could see my pulse throbbing in my neck when it went up and see my face change when it dropped back as it was such a huge relief. You then feel totally exhausted for some time as its almost as if you've been running a marathon but without actually going anywhere.

On one occasion I was away in Egypt on a lovely holiday in Cairo with some other girls, heart rate rose out of the blue one day to around 150bpm. The holiday organiser asked in the hotel for a doctor, but the hotel said doctor would probably be only good for stomach problems and suggested going to hospital. The thought of this made my heart rate go up further but organiser was looking at getting me a taxi to take me to hospital. All this took time and heart rate was up for over 6 hours. But all of a sudden it dropped back. (Thank goodness, no hospital) Everyone helped with my cases as it was the day we were due to come home and I was totally exhausted.

These 'attacks' were deemed to be 'Atrial Fibrillation' (AF) by one cardiologist. I was asked to take Beta blockers to regulate my heart. I took them for 2 days and felt like a zombie, so stopped them. Had further episodes occasionally, but some were deemed to be Supra Ventricular Tacchycardia (SVT). The only way to determine which it is, is to catch it on an ECG. Alternatively one lovely cardiologist showed me by tapping on his desk which it could be. He tapped a few times, stopped momentarily, tapped more times very fast etc etc. So fast but irregular, sometimes fast, sometimes very fast. This is most likely to be AF and there are some risks attached to this as blood can pool in arteries, so if it continues its worth considering treatment. By tapping on his desk fast but with a very regular motion, he said this would be SVT. SVT is still not a brilliant thing to have but less of a risk than AF.

But in more recent months since researching my thyroid issue in much more depth (with fab help from this forum and others) I have discovered that this was most likely to be the start of my hypothyroidism but no one looked at that at the time.

I was also perimenopausal when it started, I remember my general health was pretty good, I ran my own business teaching regular weekly dance classes and was 'full of beans' my skin and hair was good and I was slim and vibrant. All came crashing down over the next few years. However once my menstrual cycle finished (age 52) the episodes of heart rate problems appeared to diminish and disappeared altogether. But along came hypo diagnosis and after much research and finding I don't tolerate Levothyroxine well, I'm in the process of moving to NDT (it comes with issue which I believe are adrenal related, so trying to address those just now)

The other thing I found with the heart rate issue was those awful feelings you mentioned and also the absolute exhaustion when it finally goes back to normal. The other thing is when your heart rate spikes like that, it speeds up all other bodily functions, so you may find you're going to the toilet a lot!

I was also given some little tricks to try and help heart rate back to normal. Mild shock tactic sometimes help like putting your face into a bowl of cool water or drinking a glass of cold water. Sometimes breathing exercise, breathing through the diaphragm slowly and deliberately will help correct heart rhythm. I used to find I had to just go and sit somewhere quiet for a while and try and focus on something else, read a book, look at a website anything to focus my mind on something else.

It may be worth having an adrenal stress test (saliva) perhaps to determine whether your adrenals are 'tired' and one thing I was told which may be helpful is when your heart rate is out of wack (very high) its optional but you could take an aspirin. It may help to keep blood flowing and prevent clotting while blood is running unevenly. Some cardiologists recommend taking one every day, but aspirin can be quite aggressive to your stomach.

Apologies for the long reply, but the heart issues were so familiar for me.

Georgina

Bedfordshire UK :-)

irme profile image
irme in reply to

Thank you Georgina for such a wonderful reply! An SVT or AF diagnosis would explain the incidents I get. I had 3 heart ultrasounds since last December and numerous EKGs but they don't seem to show a thing that's related to SVT or AF. To be honest I am quite new to all that and I am lost in med terms and initials. I must admit that I am lost in the woods here. Anyway,my cardiologist told me that an ultrasound would detect AF( I asked only for that) and that it was out of the question. With so many symptoms still I come to wonder,was it out of the question?I have been complaining for similar issues but in lighter version since I gave birth to my older son in 2004 and suffered post partum eclampsia. It's been since 2014 that I am going down so fast and so dramatically and I still don't have an answer. After 2 years of research I came to the conclusion that it must have been my adrenals that crashed under the extreme stress of raising two boys in the spectrum. Now I am doubtful and thinking that crashed adrenals maybe have caused issues with my heart & my thyroid. I don't know. But thank you so much for taking the time to answer!I wish you all the best!

in reply to irme

Poor you! Bless you. Whenever I hear other stories such as yours I feel rather humbled and think really my issues aren't nearly as bad, but I'd just really like to feel 'well' one day instead of 'well I'm OK but/ except for....'

There is a definitive way to check whats going on with your heart (apart from counting beats yourself and keeping a record. I had a heart monitor fitted for a week, its an external one, don't panic :-) and its a bit of a pain as you have to detach it when you shower and record that on the sheet they give you (so they know you haven't passed out!). But it will pick up anything odd that happens and markers will appear when they print out the results from the little control box which sticks to the middle of your chest. I did begin to wonder whether I was perhaps having more minor episodes when I was asleep perhaps and the cardiologist said this would be the best way to find out. Also there's a little button on the control box which you press whenever you feel an episode yourself.

I had a bit of a giggle with mine because there was a wire sticking out of the top of the control box which showed above my T shirt (no matter what type of top I wore) so if anyone asked what it was, I told them it was recording equipment and I was recording a documentary for the BBC about care homes (I worked in a care home at the time for elderly, but have switched since to a nursing home, very similar environment) You have to go to a hospital appointment to have the monitor fitted, but it only takes about 10 minutes and then when you have finished the week, you can remove the monitor yourself and return it usually to a hospital 'drop box'

So when I had my follow up appointment after the weeks monitoring, had a chat with the consultant and said I'd picked up two short incidences of AF. He said yes there were incidences on the trace, but these were SVT not AF. This is really the only way they can distinguish between the two.

If you want to read a little bit thats not too complicated about each, here's a link to one about SVT which also contains some of the methods you can try to use to stop it yourself (I mentioned before about the glass of cold water etc)

nhs.uk/Conditions/Supravent...

And here's a link to some information about Atrial Fibrillation

bhf.org.uk/heart-health/con...

It does seem as though hormonal fluxes can cause these disturbances such as having a child or going through peri or meno itself. But I also am now beginning to believe that perhaps my thyroid issues actually started quite some time before I had the first blood test which I was called back to the doctor for. That was a routine blood test for something else where they noticed out of range thyroid results.

I don't know how some women take raising children so much in their stride. I had my one and only son when I was 39 (long story as to why I was late starting) and didn't manage very well at all. But my mother passed away when I was 25 and my father was already in the 'elderly' spectrum, both my older sisters were out at work and for some reason my husband couldn't take any time off work. Eventually I walked into the surgery one day with baby in carry seat and burst into tears at the reception desk. Possibly my best move as I got seen straightaway and diagnosed with post natal depression. Such a shame as it spoiled some of that time which should have been very special, but one of my sisters had a daughter. She's 15 years younger than me but already had 2 children, brilliant at motherhood and she kind of took me under her wing and showed me great ways of doing everything, short cuts etc. I struggled to get out of the house with my son at the beginning as it seemed such a marathon with so many essential things to take with you.

I took the anti depressants in the end for about 4 years! But I had weaned down to a very low dose in the later years until the GP asked me to see a psychiatrist for a review. I was reluctant but did go. The psychiatrist was intrigued with my dosage and said it was a totally sub-therapeutic dose I was taking so if I was managing, it was without medication. That was just the stepping point I needed to stop the last 1/4 tablet and from then on started to feel better.

Very proud to say my lovely boy is now 22 years old and during this summer we had results from 3 years at University, he got a 1st Class Honours degree in Electronic Engineering and is staying on for a 4th year to get his Masters Degree. He did go through all that grumpy teenage stuff which was hard to deal with but now he seems a fairly well rounded and sociable person who often calls just for a general chat now as he's 150 miles away.

irme profile image
irme in reply to

I think that raising autistic children is quite a challenge but again that's just me. On the other hand,are we talking about Holter monitoring? I thought of that as it was suggested by my GP but I am afraid that I don't fit the profile to be ordered one. I think that it goes with the medical findings and whenever I visit a doctor,there's hardly a finding especially when it comes to my heart. Kitten1978 above provided a wonderful explanation that it could actually be low thyroid not showing,which I didn't know that could happen. Many thanks for your valuable advice,Georgina!

Kitten1978 profile image
Kitten1978

Hi Irme,

I’ve had many of the symptoms, which you have experienced: insomnia, weight gain in spite of a good diet and regular exercise, low body temperature, bloating, brain fog, extreme fatigue, pains all over, bloating, anxiety for no reason, low mood and “panic attacks”, which lasted for hours (feelings of impending death, high pulse and blood pressure, extreme anxiety etc.). I have hypothyroidism ‘caused by Hashi AND adrenal issues, caused by poorly treated hypothyroidism.

I agree with the other HU members that you don’t need antidepressants. Given your symptoms, your elevated TSH and your family history of thyroid problems the most likely hypothesis is that you have hypothyroidism. Untreated hypo puts a lot of strain on the adrenal glands and they go out of whack.

Your TSH is already elevated. In the UK your GP would ask you to get your TSH retested after a couple of months and, if it’s still elevated, they should prescribe levothyroxine (some GPs ask their patients to wait till their TSH is over 10…,which is an extremely poor practice!). In some other European countries, if your TSH is elevated your doctor would immediately prescribe levothyroxine. Levothyroxine is a first line treatment for hypo in most countries. If your adrenals are struggling it may be worth considering T3 as well.

Good luck. I hope you will figure it out! Take care x

irme profile image
irme in reply to Kitten1978

My sister took medication when her TSH was 9 or so,my mother at 48 when her throat was so swollen that she couldn't swallow. I could swear that sometimes I feel my throat swollen and I have already frozen hands and feet. I tested my TSH 3 times during the past year obviously slowly creeping up,starting from 3,8 then 4,3 and now 4,6 but nobody paid attention because it was just slightly elevated. Thank you so much for replying,I wish you all the best!

Kitten1978 profile image
Kitten1978 in reply to irme

Irme,

Sometimes we have to very forceful when we want to get the right treatment.

Doctors shouldn't "diagnose" just on the basis of the TSH. The following point out towards thyroid problem:

1. elevated TSH,

2. family history of thyroid problems,

3. your symptoms. It may be worth printing the hypo symptoms from the following webpage thyroiduk.org.uk/tuk/TUK_PD...

, ticking the symptoms, which you have and showing it to your GP/endo. I assume they speak English?

The more evidence you have (TSH, family history, symptoms), the better. That's why it may be worth retesting your TSH and thyroid antibodies. Remember to do TSH tests early in the morning. It's the highest between 2am and 4am and the lowest between 2pm and 4pm. Hence, if people have their TSH tested in the afternoon it may come up as "normal", even if they feel very ill.

Unfortunately we often have to make docs listen to us ;(

You are on the right track already ;) Take care x

Kitten1978 profile image
Kitten1978 in reply to irme

Regarding your throat: coughing and hoarse voice can also be caused by hypo...

You poor sister must have been very hypo ;( Some people still feel ok-ish with high TSH, while others feel very unwell with only slightly elevated TSH...

irme profile image
irme in reply to Kitten1978

I do have coarse voice and cough but at times,not always. I didn't pay attention,I thought I had caught a cold or something. At 2-4pm I feel extremely sleepy,I can't keep my eyes open then by 5pm I am ok again. I also have unexplained increased anxiety at times,I seem to be worried for tiny things that normally wouldn't even bother me. I can hardly explain how I feel but I detect slight changes even to my personality like more slow,clumsy or sluggish. Now that you have explained everything to me it makes sense. I must admit i was relying on the scans all these years when I should have been digging deeper since there's family history.I don't have a clue if my doctors speak English,I guess they do,but in case they don't I could translate the chart which I found extremely helpful and the site generally . I can't thank you enough for the time you took to reply to me,Kitten1978!

Kitten1978 profile image
Kitten1978 in reply to irme

Irme,

You are very welcome! I have received a lot of help and support from HU members and admins and I do my best to support others. I'm glad you have found this forum as it's a great source of information and support.

Coughing, hoarse voice, tiredness, anxiety for no reason, sluggishness etc - it all suggests thyroid. I have never been an anxious person but I became a nervous wreck when I became ill with Hashi. I'm better now but still not 100%. That's why I think that the sooner you start your treatment the better. It usually takes time to find what thyroid medication and what dose suits one best.

Take good care of yourself xx

Kitten1978

stoneym profile image
stoneym

Hi Irme

Sorry reply is a bit late and you have had lots to read.

You say last year your B12 was 109 - that was EXTREMELY low!

Have you had treatment for it or taken B12 supplements?

What is it now?

Low B12 can cause many horrendous symptoms and it's best to be nearer 1000.

irme profile image
irme in reply to stoneym

Thank you Stoneym! They treated me with 3 Articlox injections in a week,then 2 injections the next week and after that 1 injection per week for three months. I know it was too low because I couldn't move hands or feet and experienced involuntary movements which vanished after the levels were restored. Last time I had my B12 tested was 1070,quite high but it isn't toxic I was told.

stoneym profile image
stoneym

OK, You can discount that then.

eileencollopy profile image
eileencollopy

I BEG of you PLEASE get LYME testing!! I am writing from NY, and I know UK is even worse, and it rarely shows on test, as it hides in cells, organs etc - but just skimming thru quickly - you have SO many symptoms - pls try to find a Lyme Literate dr - usually $$ but pls get help it affects ALL those things you mentioned and then some!!! And for me, thyroid first, adrenals couldn't handle being worked on till recently - and Lyme and those are being done naturally - try Cowden protocol for MANY things especially Lyme, financial asst available IF they ship to UK - Good luck and God bless!!!

irme profile image
irme in reply to eileencollopy

Thanks Eileen,Lyme's was what I was thinking of when I started researching and dismissed MS as a possibility.Now thyroid came up too,but I will have def to get tested for Lyme's. Thank you again.

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