Hi everyone - can I just first say thanks to anyone who gives me the time to read this. I am feeling so very desperate and alone and knowing someone might be out there just means so much.
Until 18 months ago I was a very sporty, life-loving, adventurous person who had been travelling the world for the last 20 years after selling my house and giving away my business and my possessions.
18 months ago I noticed the sensation of some kind of small lump in my throat every time I swallowed. Severe weight loss followed along with total loss of energy, total intolerance to the heat, insomnia and various other symptoms. I had some tests taken in Nicaragua where I was at the time and thyroid tests were normal. I had a biopsy taken from oesophegus (never did get results) and an attempt at one from trachea but they were unable to get the tube down. At which point I came back to the UK just as COVID hit.
GP here has done thyroid tests (normal). A camera thingy (sorry - can't remember name) was put up nose which apparently found something of concern so I was sent for a Barium swallow (think it was called) which was normal so the doctor at hospital said that was it. He just dismissed me and put it all down to my ME. I asked my GP about the possibility of other thyroid tests because of hidden conditions but he dismissed it.
Now a year later I can barely function and now, for the first time in my life EVER I am putting on a lot of weight even though I am eating little (before I had a huge appetite and never gained weight). Whatever is wrong with me has kicked off my ME again and as I am also obviously menopausal I don't even know which symptom is which any more. The lump in my throat is such that I now have to do a double swallow thing to get food down and I can only sleep in certain positions because otherwise I feel my breathing is restricted or something is pressing into my throat and makes me choke. I also wheeze when I lie down and if I touch (not press) a part of my throat I instantly gag and cough.
I am so so sad, tired and desperate. Everything I have read seems to point to thyroid issues and I seem to have all the symptoms but I am so exhausted I am starting to think I must be making it all up/being a drama-queen/being a wimp/just menopausal/ just getting old etc etc.
If you have read this far....THANK YOU. Just wondering if anyone else has had any kind of similar experience or has any kind of advice to offer. Don't want to feel my life is done at 55.
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PurpleNel
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Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
If you're considering the fingerprick test, I have some tips to help, just ask if you'd like me to post them.
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
I am so so sad, tired and desperate. Everything I have read seems to point to thyroid issues and I seem to have all the symptoms but I am so exhausted I am starting to think I must be making it all up/being a drama-queen/being a wimp/just menopausal/ just getting old etc etc.
No, far from it. Come back with results, include the reference ranges, and members will comment and hopefully help you go forward.
THANK YOU! I am so grateful for all of this. Am typing this in floods of tears (good ones) because I have some way forward and hope again and not so alone. Thank you so so much.
You are very welcome. You're not alone. We all understand because we've all been there to some extent, thyroid disease seems to be one of the most dismissed/misunderstood conditions there is.
Just to reassure you that you are most definitely not alone! I am one of those still battling with my gp to get diagnosed and there are others on the forum too!
The members here are very knowledgeable and will advise you well as most have many years of lived experience of having thyroid issues.
Also have a read of past and current posts as there is so much information and it may help you to feel more reassured to read about other members' experiences and concerns.
Try to obtain copies of the test results you have had done already. Often a full thyroid function is not completed, which is why many resort to private companies.
See if your GP practice offers online access to results, as this is the best to track any & all your results. If not obtain printouts of your results via reception (don’t ask doctor). & don’t accept verbal or hand scribbled notes you need a printed copy, with a sample date & ranges (ranges vary between labs so essential).
I would also contact the hospital and ask for the hospital notes & reports related to your investigations. They haven’t told you much but the records might have more information. In the past I’ve contacted department directly for copies of recent tests results. For older records I contacted the records department, usually a direct contact is listed on the hospital webpage. Completion of an application form and ID is required, which I was able to email & the records were posted to me. (20 years worth). If it’s a small records they can often email that to you too.
I also had a nasal endoscope procedure, the doctors exact words were “it’s not too squashed in there”. I had a known thyroid swelling so it wasn’t unexpected. It’s possible your further investigation might have been a precaution from an minor observation.
You might also find it helpful to start a diary of any new & changing symptom. medication doses and any supplements you take. Once you have test results back is it good to look back & see what was happening at the time.
Your name caught my eye. Hello PurpleNel I’m PurpleNails!
Welcome to the forum!
I can't add much more than what has already been said but once I found this forum I started getting my life back. Drs kept telling me my thyroid was fine and this forum empowered me to start arguing back and get the help I needed.
I am starting to think I must be making it all up/being a drama-queen/being a wimp/just menopausal/ just getting old etc etc.
been there, bought the T shirt, so i can save you some time. .... feeling like this about yourself will do far more damage to your life than any thyroid /other problem ever will. Stop it Trust yourself now the same way you have done for the rest of your life.
I spent years beating myself up because Doctor 's said "it can't be that, your thyroid problem has been treated now. it must be something else.. maybe some counselling would help.. we could try antidepressants if that doesn't help " etc etc.
I assumed they must see so many thyroid patients on a regular basis that they would know what as 'usual' for a thyroid condition , and what was not.
What i now know from reading posts on here for a year or so is that :
A) there is no such thing as 'usual' for thyroid problems, or their treatment.
B) Doctors may see many thyroid patients in their career . but they rarely listen to or believe what any of them actually say is happening to them. They have been conditioned by their training to only believe a very simplistic version of events.
The thyroid hormone, and the body systems for it's fine tuning and adjustment, are some of the most complex in the whole body,, and they have profound (if slow) effects on nearly every cell in the body. When they become out of balance from our own very individual setpoint of 'normal'.. we go wrong in very individual ways.
Some of us can feel thyroid problems affecting us long before we get spectacularly 'wrong' blood results.
So don't trust the Doctors .. trust yourself. Find out your own results . investigate and learn. Ignore the receptionist and the Chemist who will constantly say "but all the other thyroid patients ...blah blah.. it's only you making a fuss"
Never accept 'normal' for results .. get hold of the numbers and see for yourself.
Where thyroid blood results are concerned . "'normal results" is as much use as saying " the normal range of ladies shoe sizes is 4 to 7 , these shoes are a size 5 so they will be fine for you".. ie....no bloody use whatsoever if you're a size 7 and a half.
So ... congratulate yourself on having the good sense to find your way here.. whether or not it turns out there is a thyroid problem that can be dealt with.. it will do wonders for your mental health, just being able to realise it's not just 'you being a wimp' .. it took me 17 yrs to find my way here so you are already ahead of the game
P.s
"Whatever is wrong with me has kicked off my ME again and as I am also obviously menopausal I don't even know which symptom is which any more "
i've had thyroid problems since i was 32, I may, or may not, have had ME since i was 40. who really knows , and i have now been through the menopause and out the other side . I can confidently say that neither ?ME or menopause has cause this effect .... "The lump in my throat is such that I now have to do a double swallow thing to get food down and I can only sleep in certain positions because otherwise I feel my breathing is restricted or something is pressing into my throat and makes me choke."
Or this one ." Severe weight loss followed along with total loss of energy, total intolerance to the heat, insomnia and various other symptoms." ( quite likely to be thyroid related, happened to me too before i later went hypo)
So if it walks like a thyroid problem , and it sqwawks like a thyroid problem.. it's quite probably a thyroid problem.. even if Doctors keep telling you it's not.
Welcome to the forum…. I’ve benefited hugely from advice & support here. You are most certainly not alone; we are here to help & support one another.
If I were you, I’d take advantage of the discounts on thyroid tests at Medichecks which has been posted today. As soon as you have had the test results, post them on the forum for advice.
Thank you thank you thank you. Feeling very very emotional right now - can't believe the time all of you have taken for a total stranger. I woke this morning so desperate and in as low a state as I have ever been and have suddenly been handed these options for something I CAN do. To give someone back hope is a very great gift and all of you lovely ladies have done that. I will be ordering one of the tests asap.Money is quite tight for me as my working capacity has been severely limited because of my health (but as a freelance writer at least I DO have work and have my own schedule for that I am grateful) so am in two minds about whether to go for the Medicheck or the Blue Horizon. One is considerably more expensive but if it is much better than I will go for that and to hell with the cost. I feel like I am thinking through a fog all the time so even making a decision like this feels difficult (good heavens when did I become this person!!)
Thanks in advance for help in making my mind up.
And what a difference a day (and good people) make!
The tests aren't a case of one is better than the other. Blue Horizon is very expensive now. But you need the right one to start with. A full thyroid panel of TSH, FT3, FT4 and both antibodies (people have listed them above, I spell them wrong!). Plus Vitamin D, Vitamin B12, Folate, Ferritin. Pick the cheapest test that includes them all.
For follow up tests I've switched to using Monitor My Health which is a) processed at an NHS lab so GP can't fob it off and b) much cheaper for the basic TSH, FT4 and FT3 which is needed to monitor dose and increases etc. You don't need antibodies tested every time. Once you have a test with high antibodies you know it's autoimmune thyroiditis and don't need to worry about them again.
It can get a bit overwhelming when a lot of people give you advice all at once. I recommend getting an A4 pad and reading through each answer and writing down the important things from it. Then work through it like a check list.
Find a ring binder to keep all your test results in and doctors communications and if you begin medication always write what your dose was on the results you get back each time.
It would be worth considering some HRT to at least help with that part of the problem. Something transdermal, patch, gel, spray and a progesterone product to go with it. I'd avoid tablets as they carry a little extra risk of clot (no risk of that with transdermal) and your liver might be struggling with all that's going on.
Most hypothyroid patients are cold. But I have become very heat intolerant. I am hot all the time and can often be found sitting outside in winter just to cool off because the wood stove has overwhelmed me. If we have a heatwave I'm in a right state.
I used to be totally the opposite. I was a real sun bunny and was just warming up when others were wilting with the heat in the shade. Now it's me in the shade, throwing off the bedlinen and taking cold showers. I think my thermostat is broken!!
You sound just like me, I also used to be able to sit in the sun all day without overheating or sweating, and have a tog 14 quilt on the bed all year, but now only have a sheet on the bed.
I’ve always felt the cold but since menopause/breast cancer & tamoxifen/ low B12 and low D and then becoming hypothyroid all within a few years I go from hot to cold all the time, even within seconds and often have a hot upper body with cold feet. Or cold skin but hot internally.
When persuading a GP to increase my Levo recently he wanted to actually check I needed the stuff at all. He was a bit of a know-all and asked me, “ when you go into a room do you prefer a warm room or a cool room?”
“Well, doctor, my thermostat isn’t working either way, so…”
“But do you prefer the warm room or the cool room?” He was sounding a bit insistent this time, almost aggressive,
This is me too! I can go from shivering to feeling so hot I feel nauseous and ill. And parts of me cold and parts of me boiling. I had started to think I was imagining it so thanks for sharing this. So sorry you have been treated so dismissively.
I’m so sorry you’ve been feeling so crappy. I too spent years thinking I was either hypochondriac or being a drama queen because my doctors didn’t take me seriously, diagnosing me with everything but hypothyroidism despite increasing TSH levels and decreasing FT4.
Thing is, your suffering is real. I’m glad you’ve got some way forward now and hope you get on okay with your tests.
Thank you so much for your words. Just being heard by someone already makes me feel like I can do this. There are so many people on here like yourself who have suffered so much without help for years. I felt so very alone. Now I don't. THANK YOU.
I wish I had invested in private blood tests after being "monitored" but not treated for 2 years. Now I'm just starting levothyroxine now the magic over number 10 TSH has been reached. Good luck with everything x
I can assure you, something in your throat affecting swallowing and breathing lying down is nothing to do with menopause. Have you had a scan of your thyroid? If not, you need to insist that your GP puts you in for one and if he won't, you need to find a different GP. Sometimes we have to be forceful.
Can you ring the department and lay it on thick? Cry? Tell them you daren't go to sleep because you are afraid that you might choke? We have to be creative in this illness. Or, ask to be put on the list for last minute cancellations. As you control your own working hours this could be a good way of getting a chance earlier.
I have an appointment with the doctor to tell him my symptoms have got worse and ask for an acceleration but I have to wait for 4 weeks even for that. Crying seems to be something I do without trying too hard now nd then I worry I am just coming across as a hysterical woman!
Hi there. So sorry you're struggling. I didn't get diagnosed until I was 27(much older now) but it started with a sensation of choking when I moved my head to the side. Suddenly I started gaining a lot of fluid and my face exploded in cystic acne. My voice was hoarse. Over the course of a year a golf ball size growth developed on my thyroid. Looking back over the previous 15 years I definitely had symptoms of hypothyroidism. Bouts of extreme depression and mood problems, at times anxiety, sleep problems, and fatigue.
Thanks so much for sharing that. I haven't encountered anyone else who has had this blockage in the throat sensation. My sensation is definitely made worse on turning head. My weight gain has been very sudden and my face and stomach are bloated. How long did you have the choking thing, how did you find out what it was and what did they do?
Before the symptoms became severe I visited a woman's clinic and when asked how I felt my reply was that I had some fatigue. For the first time in my life a doctor started to feel my thyroid. At the time I had no idea what this woman was doing. I didn't know what a thyroid was. She told me she felt something on my thyroid and told me to see an endocrinologist. Over the course of several months it grew and so did the symptoms. I finally went to the endo and they did a fine needle biopsy but couldn't get any fluid from it. At that point it had to be removed surgically. Two years later I was put on Levothyroxine.
So glad you were listened to and it was sorted. Don't think mine can be the same. I have had this 'thing' in my throat for 18 months now and by the sounds of things for you it would have grown a lot more.
So sorry to hear about your struggles. I can understand how difficult it is for you. Your post gave me tears since I can relate to parts of it.
Like you, I’m undiagnosed, been stuck in limbo land for too many years, despite my symptoms progressing and new ones appearing. A doctor and a neurologist I saw 4-5 years ago made me feel like I was crazy. And a Rheumatologist I just saw, for different symptoms, put in the medical notes that my swelling and redness waa subjective. Yet she saw pictures and saw things in person.
So I get the emotional exhaustion, frustration and feeling desperate when you feel like your body is betraying you and you aren’t getting the help from medical professionals.
Remember it’s not you. You are not exaggerating. You are not a hypochondriac. Your symptoms are not a figment of your imagination. The medical system is broken, and it’s truly bad where I am, in the US, because doctors are too dismissive and say everything is stress. And if you’re a woman, you’re made to feel you’re just stressed and/or crazy.
So it’s good you have a huge support here with people who can advise you of tests you need and what to do. Don’t give up! Keep advocating for yourself. You deserve to be pain free with a functional body. One day things will be better for you! Hang in there!!!
How very sweet of you to offer such kind words of comfort and support when you are obviously struggling so very much yourself. Thank you so much for reaching out to me. I began this day truly wondering what is the point in struggling on and have ended it with that little candle flame of hope burning the brightest it has in the longest time. And just as important is so many people telling me I'm not crazy. There must be so many of us out there being made to feel like we are hysterical and crazy and eventually you come to believe it. Just 2 years ago I would dance all night long and surf all day. Now I can barely walk 10 steps without needing a rest. Then I feel bad for moaning because at least I CAN walk 10 steps.
I so hope you can get the help and relief you so obviously need and thank you again for your words and time.
Thanks! You’re not moaning. You’re just confused on what is happening and looking for treatment. Yes there are soooooo many of us undiagnosed people. I have read hundreds of stories through the years on how doctors dismissed them or told them they were just depressed.
One woman I read was married to a doctor and had other doctors in the family. They missed her cancer symptoms. She didn’t make it and was only 37 or so. I’m not trying to depress you telling the story, just trying to emphasize how common it is to be in limbo land. So you’re definitely not alone!
Hi. Just to add. Do not doubt yourself. You know u better than anyone else. Get the testing done. All the T’s TSH, T4 and T3. Get antibodies tested as well. That way u will have an informed picture of where u r at. Like above tested before 9am and nothing to eat only water to drink. Being emotional is all part of the thyroid disease. Feeling low as well too. U r not alone. Do your testing and place a new post. You will get great advice here to help you move forward as you journey through this phase of life. I’m 48, only just a bit younger than u.
Don’t give up hope. When I came to this site I was very unwell. The good people on this site have helped me immensely. You’re in the right place. Love to u 🥰 PS cry all u want. I have cried rivers. Now I’m better I don’t cry so much. 😊
Thank you! Isn't it daft that I need someone to justify my crying and having a little pity party but it makes more difference than I can say. I came on here with my little flame of hope about to sputter out and now it is burning again - I have my testing kit on the way (didn't even know they existed) and I have all these people who understand COMPLETELY and are ready to hold my hand. Last night when I was struggling to get into a position that didn't make me gag and cough as this thing in my throat pressed into me I suddenly thought of all of you out there and the comfort that it brought me was immense.
Now that you have found this wonderful forum, you have taken the first step in getting yourself well again.You are NOT alone, and we are all here for you.
I think coming onto this site let’s u align yourself with people who are going through or have gone through what you are experiencing and because of that it reassures and let’s you know what u r experiencing is normal. Nothing can buy that knowledge that you r not alone. If u r experiencing gagging and pressure then this is serious as it is compromising your airway. You need a scan. No two ways to say that. I think either hyper or hypo are equally terrible diseases. There is both physical and mental suffering. It’s just not easy. Having this forum to share your story with is where you will find answers. First we need blood results and a scan next. Post anytime. Sending u love and best wishes always 🥰
Welcome to the forum. Just a thought - you were overseas when you became unwell. Is it possible you could have contracted something there that only the hospital for tropical diseases would know about?
I was helping someone fill in a PIP form (requesting government benefit for chronic conditions) who was very ill and happened to mention that he’d been working in China just before he became unwell. Later I read something about a tourist to China becoming very ill in a similar way.
Probably no connection, just worth considering. But you need a diagnosis rather than a cause.
I actually wondered the same thing. In my last 20 years of travelling I have picked up all kinds of things and been in hospital a few times with everything from dengue to amoebic dysentery. When I mentioned this to my doctor though he just dismissed it and said it would have shown up on tests by now.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Trust yourself now the same way you have done for the rest of your life. 
Undiagnosed and so unwell
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Very confused about my next move!
Still undiagnosed thyroid issues!
